Mason

the next day.....

2011-01-30T23:19:00.000-08:00

Mason improved by the hour all afternoon and evening. Seizures lessening and he became more like himself. Sometimes it drives us crazy when he is chattering non-stop and asking questions. "what dis?" "why?" is what we hear A LOT!!! (anyone who has ever hung out with a toddler knows what I'm talking about!) But it was wonderful to hear him say it again this evening, after he said very little in the last almost 2 days.

This was his worst case of status he's had.

He was still having a fair number of seizures this evening, but nothing like yesterday and he had no signs of status. :)

He settled into bed quite nicely and fell asleep sometime after 10. But he did sleep until noon today!

I plan on putting him on the bus for school tomorrow. Keep to his regular routine as much as possible.

God IS Sovereign and nothing happens without Him allowing it or causing it. He IS in control. He IS the one I trust.

Mason in ER

2011-01-30T17:06:00.000-08:00

After a 4 hour sleep the night before, Mason went into non-convulsive status around 9 am Saturday morning. Hoping it would end on it's own, we waited it out. But when he couldn't fall asleep in the evening (because of the constant state of seizure his brain was in), I called the neurologist-on-call at Children's Hospital. She was quite insistent that we call 911. Rather than traumatize Mason with an ambulance ride, we decided to drive him in around 11pm. So we rallied the troops, Uncle Tony and friend Adriana to meet us at ER. It takes 3 or 4 of us to hold him down to put the IV in. Around 2 or 3 am after several hours on IV fluids the status started to settle a bit and we were home by 4am. Mason fell asleep quickly and we both slept until noon. Although he woke up several time with seizures and to go to the bathroom. We keep an extra mattress under his bed for when we need to keep a close eye on him at night.

While in status, he was very quiet, had a low husky voice, and was in a slow-motion state, sow walking, slow movements, etc. We didn't hear him laugh or say very much at all. His face looked like he was very high on drugs. He was quite He's normally quite a chatter box, and his voice volume does not turn to low very often. As well as being in status, he was having Tonic seizures several times an hour, increasing to having one every few minutes.

So right now, Sunday afternoon, Mason is having a play date with his friend Greg, playing wii. He is getting more and more alert by the hour. :) still having a seizure every few minutes earlier in the afternoon, but the state of status epilepticus is GONE!! :) Now, almost dinner time, he's getting noisier and having even few seizures. I'm not paying close attention because he's having too much fun playing!!! I now hear him talking a lot more, getting noisy, face is looking much more alert, and lots of laughter!! :) And he's getting bossier. :) And a lot more active.

Mason randomly has non-convulsive status epilepticus. Unfortunately for him, the meds that normally stop the status don't work on him. On many meds, he has paradoxical reactions. Example: when they gave him Valium, instead of putting him to sleep, it made him super-beyond-belief hyper. Status in Mason is usually triggered by slightly raised body temperature, or slight fever. The raised temperature induces status, and being in status raises body temperature. Vicious circle. IV fluids help to cool down his body and break that cycle. Advil used to work. Sometimes it's hard to tell when he's in status or just having a lot of seizures. There is a difference though!

Here's a link that explains status simply:

http://en.wikipedia.org/wiki/Status_epilepticus

The staff in ER last night were amazing!!!! Especially compared to last April when they wouldn't listen to me at all!!!

The bloodwork that we had done on Thursday went as well as can be expected :)

So that's my educational input for the day!! Thank you for your prayers. It's been quite a week!

Shirley & Daryl

Make-A-Wish Vacation part 1

2010-08-18T13:16:00.000-07:00

I'm sitting on the back porch of our suite here in Kelowna, thinking over the last few days, weeks, and months. A year and a half ago I applied to Make-A-Wish, on Mason's behalf, for a beach vacation, not thinking that it would actually happen. Within 5 minutes the phone rang! And the process began. Mason LOVES beaches, so originally we thought of going to a hot beach location during winter...until we discovered that Mason would not go on a plane! So after tossing around a bunch of ideas, and decided on Kelowna.

We met our wish granter, Jay about a year ago. He volunteers for Make-A-Wish and has the fun of getting together with the families. He's come out to our place several times, always bringing gifts for Mason, stickers, games, hats, and so much more. He even came to see Mason in the hospital in February, and to our big Purple Day celebration in March! A week before coming to Kelowna, he came over with more gifts for Mason, beach toys and bags, and a big surprise...a Wii ga

me system! Others are too difficult for him for the most part. We have really been spoiled so far!

Sunday, August 15 began with much excitement! The drive in was uneventful for Mason. Yeah! That was one of our concerns, that he would get restless and have a difficult time being in the car that long.

Upon arriving at the Grand Okanagan Resort in Kelowna, the assistant manager escorted us to our large two bedroom suite. She showed us around and explained various things to us. It did not take long for Mason to pat the sofa seat and engaged her in doing crafts! A little later, he had her sitting on the hard floor with him looking at his Eye Spy book! I was quite impressed! Especially as she was wearing a suit with a skirt! There was a lovely gift basket waiting in our suite for Mason as well. Loaded with Sponge Bob items and candy and journals for the girls. soon after our arrival, they brought special drinks for all of us (shirley temples). A little while later, they brought some fruit and

fancy snacks. Meanwhile, we also found out that valet parking was included! What a treat that has been! They brought all our luggage up for us, later on when we returned from getting some groceries, they brought those up for us too! Each time we want to go out, our car is ready at the front doors. Mason gets upset if we get there before our car does... our parking spot is always the same...right in front of the door...Mason doesn't realize that they drive it away! Sometimes the valet guys give us water bottles as we head out. We sure are feeling very very spoiled!

Our suite itself is quite luxurious. High end appliances in the kitchen, granite counters, exquisite ensuite of marble. Beautiful cork floors throughout, designed in an intricate pattern, with inserts of marble tile. One of the balconys has stairs going down to the promenade along the lake. Yes, we are just a few steps away from the marina, with the beach about a 5 minute walk away. Unless w

e go Mason-walking-speed, then it's a bit longer. He has two speeds run -full-blast or walk-like-a-snail. The view from our second story location is amazing. The balcony off the master bedroom is covered and quite long. We've spent many hours lounging and reading on the outdoor couches. Asia and Sydney have made a lot of bracelets out on that balcony!

We have access to the pool by either going through the building, or down our steps and taking the outside route. It's quite crowded there, and it's difficult to get lounge chairs most of the time, but we sure have fun playing around! I love it that my toes can touch the bottom everywhere in the pool! I can't swim and don't like it when I can't touch the bottom.

Make-A-Wish has given us quite a budget for food and activities. We're feeling uncomfortable at times with the amount our restaurant meals are costing! Yet, this is our opportunity to say 'yes' to the kids when they ask for milkshakes with dinner, or hot chocolate at breakfast! Sydney is on a mission to have a milkshake or 'special drink' every day. LOL Our pattern seems to be that we eat out twice a day and eat in our room once. One night we ordered in Boston Pizza and a movie for the kids, while Daryl and I walked up the street for dinner on our own.

There is so much within walking distance from our place! Paddle boat rental right next to us. Many many restaurants and interesting shops. There is also a section where vendors sell their wares. The girls and I had some Henna designs painted on us at one of the booths today. Fun Fun!

well, I shall sign off for now. I want to make sure that I write down as much as possible here, or I know I will forget some of the interesting details!

The hotel gave us gift certificates for boat or paddle boat rental, one free movie, and the activities group is not charging us for any of their daily kids' activities. Mason loved painting a picture frame! Tomorrow is Tie Dye! The girls really want to do that!

Where Are the Rest of the Steak Knives?

2010-07-18T23:27:00.000-07:00

I can tell when I haven't posted in a while when people start asking for another one! Well, after neglecting this blog for a few months, here we go....

Well, as usual, Mason never leaves us wanting for an interesting story. As he continues to progress developmentally, we attempt to give him a little more freedom here and there....not such a good idea!

~ I've taken the knobs off the stove because he wants to help cook.

~ We will eventually be painting a feature wall in our living room. Not sure what color yet, but it won't be blue... to match the sharpie design on the wall! We tried a number of things to take it off. Whatever took the marker off, also took off the paint. Thankfully he did not alter the artwork next to his artwork! Nor did the sofa receive a pattern....

How many balloons do you see?

~ Occasionally I linger in bed after Mason gets up in the mornings. I tend to lightly doze off and on, but I can still hear what he's doing. Watching a video or TV show, play a game on the computer, play with our new kitten (Baby), puzzles, games, pouring a bowl of cereal, etc. It is pretty neat that he can go and do some of this on his own :) Well, this morning, I guess I dozed a little deeper than usual... Sydney came running into our bedroom demanding my attention on the stairs. Mason had thrown about a dozen knives down the stairs!! Dinner knives and steak knives. I hadn't heard a thing! When I asked him why he had done that, he said "Baby". So my best guess is that he was using the knives as toys to grab Baby's attention! But I think I'm missing some steak knives! Not sure what else that boy did!

Seizures: He's having about 3 - 5 clusters a day I think. One or two during the night. Between 5 and 6 seems to be the common time right now. He usually settles pretty quick, but with the sun up so early now he thinks it's time to get up and play! When he says's "sunshine" I know it's going to be really hard to get him back to sleep! Then randomly throughout the day. Each cluster can be between 1 and 20ish seizures (and last up to 20 minutes or more). If it's one, he freezes in that position for up to 45 seconds. Sometimes he's tired after that and goes for a nap. The bigger clusters don't phase him at all. He stays alert through it all and just keeps doing whatever he was doing. Including talking... and boy is he ever a chatterbox!!! :)

Favorite songs we hear him sing a lot, and he knows most of the words!:

"You are My Sunshine" He can sing the Veggie Tales version pretty good!

"Away in a Manger" Even tho it's been quite a while since Christmas, we hear him sing that song quite regularly!

Summer is going well so far :) Mason has been going to StarClub on Mondays. He heads off to camp in a week. He'll be going for 4 nights. :)

Papa and Mama just held their 50th anniversary celebration this weekend. It was a GREAT party! We were not sure how Mason would do, but he sure surprised us all! He even sat through most of the program! And he didn't get upset that he couldn't have Papa all to himself! I had a teen family friend come with and help out with Mason for the day, so that really really helped.

Mason just completed grade 5. Wow, that was our last year at elementary school... ever! So this fall, Mason will be going to middle school for grade 6, Sydney is going to high school and will be in grade 9, Asia will be in grade 11. Yikes, now I feel old!

Mason loves going for rides with Asia driving. Yes, she is 16 and has her "L"! She and I have come to an agreement, tho, that Daddy will be taking her driving. She's taken time off learning to drive, tho. She broke her collar bone, which made it difficult to steer and shoulder check for a month. Now she's at camp in leadership training for nearly a month, so practicing will have to wait again!

Sydney will be going to camp in August. This is the second year, now, that all three kids get to go to camp! Very exciting.

Then later in August, Make-A-Wish Foundation is treating us to a vacation in Kelowna! We can't take Mason on a flight or long drive, so our vacation destination is nearby. Although we go to our trailer on a regular basis (mostly me with the kids), we have never gone on vacation as a family! (other than trips to MB to see family) We are very excited :) We'll be staying in a 2 bedroom 1200sf suite for a week. Everything will be taken care of. Food, gas, activities. The timing is really good, with our kids being the age they are, we don't have much time left before they are off doing their own things in summer or have jobs.

Imagine Ministries is something I've mentioned here before. Without Mason's medical and developmental issues, that is something that would not have been started. We now have 9 children with special needs registered for weekend services receiving care and teaching while parents attend the service.

Imagine Respite is happening once a month, and we have about 27 kids with special needs and their siblings registered. We've had to tweak a few things here and there, but it's been going very well. Parents drop their kids off for a 3 hour evening. We give them dinner (pizza donated by Boston Pizza) chicken strips veggies etc. Games, activities, singing, Bible stories, Jesus crafts. Then near the end Veggie Tales movies and snacks. The kids are deceptively calm when their parents arrive, having had a fun filled evening, while parents have had some time to themselves.

Various groups in the community are getting wind of Imagine Ministries, and we can potentially see it grow by leaps and bounds. Why? Well, first off, God is the One who makes the growth happen. The many volunteers and I are eagerly doing what He has asked of us. And that is to care for these families. Currently there are more than 1000 families on a wait-list for respite services in our area. Those are families that need help but have little or none. I could go on and on here, but if you want to know more, go to www.imagineministries.ca

Well, I shall see if I can find some missing steak knives.....

Back to 'Normal'... or what is normal?

2010-04-14T19:05:00.001-07:00

Well, Mason's back to normal. Although, really, what is normal? Our normal has involved constant changes and off and on crisis for many years now. So, the events of the past few days is more of our 'normal'. Nothing really out of the ordinary.

Just last week I was crying out to God about various difficult things in my life, mostly my health and Mason's. Still waiting for Jesus to come to us and heal. Sometimes I'm just so tired and weary of this journey.

We're in a family Bible Study and have been going through the Book of Mark. It's filled with so many miracles that Jesus did. Yet, what also strikes me, even though it's not mentioned there, is all the people he did not heal.

I was listening to a powerful song earlier by Casting Crowns called, 'Praise You in this Storm'. One that has meant a lot to me for a number of years.

listen here: http://www.youtube.com/watch?v=xGPS8sa-bRQ

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Even though there is a pause right now,

it's still raining.....

....but my help comes from the Lord.....

Day Three

2010-04-13T22:00:00.000-07:00

Today, Tuesday, was a good day :) Mason slept through the night all the way to 6:30. I did notice he had some seizures in his sleep, which is pretty normal.

Around 9 am he suddenly ran into our bedroom yelling `daddy`s bed!` And so he and I took a lovely nap.

My memory is quite unreliable right now, so I can`t remember exactly how many seizures he had today, but it was extremely minimal in the morning.

I took Mason to school around 11. It looked like he was having seizure It sounds like he was having absence seizures at school, blanking out or pausing in the middle of doing stuff. He was away for the evening and it sounds like he was his normal self. :)

During one of his seizures on Sunday, Mason started giggling hysterically and saying 'noise' and pointing to his head. Apparently the seizure was triggering a sound in his head that he was enjoying!

On Monday he again started giggling and said, "seizure...tickle". I asked him where it tickled. He pointed to his tummy.

So in spite of having so many seizures, they never seemed to upset him. Rather, some of them created some rather pleasant sensations for him. Tiny blessings ;)

As I sit here and reflect over the last few days, I am overwhelmed with extreme gratitude to God for taking care of us! I never felt a sense of panic, we had great support with Kim and Tony dropping whatever they were doing to come to the hospital to help, a lot of prayer support and encouraging words from soooo many people. And eventually everything worked out with the medical support.

Please do keep praying for our boy :) And thank you for doing so!

A New Trail in Mason's Journey with Epilepsy

2010-04-12T21:40:00.000-07:00

Wow, what an intense couple of days it's been!!! Normally Mason has about 3 to 8 seizures per day. Yesterday, well over 300. Thank you to sooooo many people for praying for our family!!!!

I've probably forgotten some stuff already, or got things mixed up a bit, but here's the jist of it.

So back to the beginning of the story...

SUNDAY, April 11

Mason, Sydney with her friend Liv, and I were down in the US at our trailer for the weekend, having a great time in the fabulous weather. Mason woke up really early Sunday morning so had a nap later. The drastic increase in seizures started after he woke, around 1pm. I didn't really pay close attention to them because he occasionally has clusters of seizures that settle down after a while. After a couple of hours I realized that they were happening every five to ten minutes. His forehead felt slightly warm.

Increased body temp triggers on-going seizures while on-going seizures increase body temp. And so it's a vicious circle until we break that cycle. The meds that work to stop seizures quickly for most people don't work for Mason. For some reason, Children's liquid Advil has helped in the past. It didn't even occur to me to give him some until 3:30! The seizures slowed down slightly for about half an hour, then started to increase again. At that point Mason started having a seizure every minute or two or three. When I realized that the Advil was not working we started packing up to come home. They kept going about one per minute the whole ride home, an hour drive plus border line up about 20 minutes. We went straight to Abbotsford Hospital. Liv's dad picked her up there, while Daryl and Auntie Kim and Uncle Tony joined me at the hospital to help out. Mason does not care for hospitals, so I needed all the man-power I could get.

The triage nurse got us in right away, so no waiting in the waiting room at all. We had to carry Mason in. In spite of the constant seizures, he remained alert and aware the whole time. And he tried with all of his 95 pounds and booming voice to fight his way out of there!

We did get him settled fairly quickly (great teamwork!!) then waited. Eventually they gave him some Ativan to stop the seizures. Later they gave him some more. It didn't work at all. Valium and Diastat are two other meds commonly used for this, but Mason has bad anxiety/behavior reaction to them.

The ER doctor came in and did the normal asking a ton of questions. It quickly became very clear she thought I didn't know much about seizures. (insert my hysterical chuckle here!) When I realized this, I informed her that Mason had had well over twenty thousand seizures in his lifetime. I don't think she believed me. I also told her that IV fluids have helped control the seizures in the past. Apparently she didn't believe me about that either, because she didn't order IV fluids.

They wanted to do some bloodwork. I tried telling the lab tech that we needed to have Mason on the bed and 'ready': Daryl laying across his legs, Kim across his hips, me across his chest and right arm. He also needed another person to hold Mason's left arm still. So what does the guy do? Totally disregards what I told him and sits down next to Mason with the rubber strap and starts telling Mason what's going to happen and asking him if he was scared, and why etc. So does Mason take all this calmly while understanding the tech's reasoning? Nope. He gets up and starts to bolt! And scream. Then when we try to grab him he turns to jello and ends up puddling his body on the floor over and over. Finally we get him on the bed and assume our positions. Thankfully the wonderful experienced nurse actually poked the needle into Mason's vein, but the tech wasn't quick enough to hand her the next tube and blood went squirting up a few inches and all over the side of the bed/sheet and puddled on the floor. (I have never seen that happen in real life before.) The nurse was pretty close to yelling at the lab tech. I sure hope he'll listen to parents in the future!

His bloodwork came up all clear, no infections. They left an IV plug in his arm. Mason was fine with that.

Earlier when we had arrived in the ER, Mason's former pediatrician was at the counter talking on the phone. We hadn't seen him in years, so when he got off, I went and re-introduced myself (he didn't remember me until I mentioned Mason's name) So he came over and said hi to Mason while carefully and secretly poking and touching Mason in various neurological spots. I've seen Mason poked and touched by doctors enough to recognize what Dr. Traverse was doing. But officially he couldn't see Mason without protocol being followed. The ER doctor would have to refer him. Well that took nearly three hours. (in Mason's past ER visits, the first thing they do is call the pediatrician) I told Dr. T. about the IV fluids working in the past, he didn't seem to think that would work, but went along with it anyway. He left soon after that so didn't get to see that it did work! I am super thankful that he did listen to this parent!

So, with the combination of another dose of Advil along with the IV, the seizures started to slow down. Mason was very cooperative when removing the IV and off we went to go home with a prescription for Topamax, a seizure medication we had tried many years ago.

We got home at 12:30, gave the boy a quick bath and he was in bed and asleep by 1am. He woke up many times at night with seizures and he soaked the bed twice, due to all the fluids. I slept on a mattress on the floor beside him.

Something I learned: I need to plan ahead (during the drive in) to be assertive with the medical staff.

MONDAY, April 12

Well, I woke up at 8am stumbling out of Mason's room, longing for more sleep. Mason, on the other hand, woke up all perky, bouncing out of his room making scary pirate sounds, arghhhh, at the cats, and giggling with delight as they took off as fast as they could. I'm in total shock that he can wake up so happy after such a lousy night!

Mason was still having a significant amount of seizures today. I'm guessing 50 to 80 seizures throughout the day. The Advil seems to be working better with his seizures slowing down for a couple of hours, any way. He did wake up with a mild rash on his face, but have no clue what it's from.

I spoke with Kelly, our nurse at Children's Hospital. Although there is really no way of knowing for sure what is causing this sudden increase in seizures, our best guess is that Mason is probably coming down with something. In spite of his temperature at the hospital being normal, I think it's slightly elevated above whatever his normal is. Even the slightest increase in his body temp can trigger seizures. Which means even a mild cold with a slight fever sends him into this state. Our biggest issue right now is that we have nothing that can stop the seizure/temp cycle any more, since the Advil is no longer effective as it was in the past.

So for now, it appears that we just have to deal with the seizures. Not much we can do about it. More 'Barney' theology: "can't go under it, can't go around it, can't go over it... have to go through it"

And the only way we CAN continue through this is knowing that Someone is there to help us through it! And from past experience, I know that this is part of God's GOOD plan, even when it feels horrible in the middle of the muck.

Psalm 18:6

In my distress I called to the LORD;

I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.

Purple Day

2010-03-26T09:27:00.000-07:00

Pray for Jared

2010-03-17T07:55:00.000-07:00

Currently, my friend's young adult son is in the hospital in Vancouver undergoing the same test as Mason recently did. He's already been in for a week without any seizures. Please, please, please, pray that he will have some! And pray that he will be able to have brain surgery for the seizures.

Thanks!

Mason's Purple Potty Birthday

2010-03-17T07:53:00.000-07:00

You are invited to our Purple Potty Birthday Party!

Several things are happening at once, so we are combining it into ONE open house party.
~ Purple Day for Epilepsy Awareness (March 26)
~ Mason's 11th birthday (March 29)
~ Mason is toilet trained! (March 2010!)
~ God is GOOD! (All the Time!)

- We are officially celebrating something we never thought we would! Mason is a 'big boy' now! The Toilet Training Mission has been a success! We have had the help of many people, especially his teacher and TA's at school who started working on toilet training Mason long before I did.

You have followed our journey by reading (some?) of my emails and maybe even praying for us. So it's time to mark this huge milestone with us!

- We heard about Purple Day last year and helped with epilepsy awareness. So our party will have a purple theme.

here are a couple of facts:
~ Each day in Canada, an average of 42 people learn that they have epilepsy.
~ Each year an average of 15,500 people learn that they have epilepsy; 44% are diagnosed before the age of 5, 55% before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are young children and senior citizens.
more: http://www.epilepsy.ca/eng/content/sheet.html

- Mason is having another birthday! 11 WOW. He does NOT need gifts, (unless you want to buy him a Wii system! LOL he loved the Mario 2010 ski game when he was in the hospital! I was amazed at how well he did!) .... but if you would like to bring him something, bring a birthday candle or any kind of candle. Purple if you can find it :) One of his favorite things is singing happy birthday to himself, with us as his accompanying choir and blowing out the candles.

WHO: Anyone who knows Mason or our family. Anyone who has been following his story, even if they don't know him yet. Those who don't know us, but may have Epilepsy or have a family member with Epilepsy. Or those who want to become more 'Aware' of Epilepsy.

WHEN: Friday, March 26, 6 to 9ish pm drop in any time stay for a bit or stay longer!

WHERE: #2 - 2525 Yale Court, Abbotsford, BC click here for map (we moved last summer)
There is some parking inside our townhouse complex, but you can also park on the street/cul de sac. You cannot park in the strip mall parking lot. You might be able to park in the Great West Fitness parking lot right across the street from our place. but there are not any 'no parking' signs. But that is 'park at your own risk ' - I don't know for sure if it's safe.

If our gate is locked, use the buzzer system under the roof next to the gate. Or call us and we can open it from our place: 604-854-1456 (gate is open until 7:15 or so)

WEAR PURPLE!!!

Shirley
(if you can, let me know if you're coming. Otherwise, just show up ;)

Bucketful of Miracles

2010-02-27T12:31:00.000-08:00

There are so many cool things happening with Mason!

(but I'll first let you know that we have not heard anything else from the neurologist about the final results of the testing in the hospital)

In spite of an increase in seizures over the last few months, we are still seeing amazing progress in Mason. So I'll pull a few things out of the bucket for 'show and tell'.

We walked to auntie Kim and uncle Tony's last night. We didn't use his 'stroller;/wheelchair'. Mason didn't bolt off or anything. We walked along like a regular family!

Toileting...wow. Other than while he was in the hospital recently, I haven't put a diaper on Mason in quite a while! He's had a few solid accidents when he's been out in a different environment. We don't even have to remind him to go to the bathroom at all! Unless we're going out or something. Another huge bonus is that he is staying dry all night! Do you know how much less laundry I'm doing?!?! I did not expect him to be night trained at all, but apparently his night seizures do not affect his bladder control. =]

Mason will get his own bowl of cheerios. Gets his bowl, pours the cheerios, puts on a bit of brown sugar (sometimes an extra spoonful doesn't even make it to his bowl, going straight to his mouth instead), pours his goat milk, sits down and eats it.

Walks out to the bus all by himself! I watch out the window, but it's a short walk past our neighbours house, around the corner of the hedge and gets on. Learning a bit of independence.

His speech is continually improving and becoming slightly clearer. He loves singing. Current favorites: Walking along singing 'Away in a Manger' and sitting on the couch playing his guitar and singing along with 'Spongebob and Mason'.

Mason can put together 24 piece puzzles without a problem. He can also manage the remote control for TV all by himself.

There are many times that we are caught off guard by something Mason does or says. We are thoroughly enjoying these miracle bites =]

SpOnGeBoB and MaSoN

2010-02-19T00:09:00.000-08:00

cousin-uncle Christian wrote this just for Mason!

Tartar sauce! (Mason's favorite Spongebob expression ;)

Olympic Moment

2010-02-16T08:41:00.000-08:00

Sydney was watching the Olympic highlights last night when Alexandre Bilodeau's race was shown. She told me he was her favourite athlete. "Why?", I asked, expecting the answer to be that he won gold for Canada. " Because he's proud of his brother with special needs."

Way to go Sydney!

~Everlasting God ~ Almighty God~

2010-02-09T23:07:00.000-08:00

First a disclaimer here. I want you to know that I have a few reasons for blogging here. One is to let you know what is going on with Mason for your awareness as well as to know how to pray for us. Another reason is that it is very therapeutic for me. And lastly, this is one way that I can chronicle parts of my life. So this post falls into the last category. I don't want to forget today. So you're not allowed to read this!! JUST KIDDING!

Here goes....

I love our pastorate group!!! We met today and God really used this evening to speak to me very deeply and personally. Most of the time I am easily able to contain my emotion until I'm in a private setting. Not tonight. I couldn't even sing the first song and had to leave the room during the second one. As we sang 'Everlasting God' these words pierced my heart: "strength will rise as we wait upon the Lord" after the song the question was posed: "what does this mean? to 'wait' " Hope was one of the replies. I realized over the last few weeks I had been placing my hope in brain surgery for Mason. And today's news from the doctor, that it is unlikely that Mason can have the brain surgery, was crushing. So God was redirecting my vision to Him in this song. Other words in this same song: " defender of the weak" reminded me not only of Mason's condition, but that I, too, am weak. God alone is "our hope, our strong deliverer".

God continued during the next song, 'Almighty God'. "life itself; your perfect plan--- it's all for Your Glory". Wow. God's perfect plan in Mason's life is to glorify God!! Not my perfect plan! Not what the world thinks his life should be.

Later on, we had a discussion on the life of Joseph and how his life was quite up and down; favored son who was sold into slavery by his brothers. Then had the good life in his masters home only to be sent to prison: not knowing when he would get out or be rescued. Yet through all of this, his faith and obedience and commitment to God was unsurpassed.

The other thing that crushed me today was coming to the realization that Mason is having a lot more seizures than I thought he was. The unlikelihood of him having surgery means the rest of his life will consist of trying various medications that may help here and there, but will never render him seizure free. Today I feel like I'm in that prison of the constant battle against the seizures, not knowing when we will be rescued. Yet the same God of Joseph is my God. My Rescuer, the Ancient of Days who has always been and will always be who knows and sees all. My Comforter, Almighty God.

So this is my prayer, that my life will reflect that my hope is only in God, no matter what my circumstance is, that I will always be faithful and obedient to Him. May the Lord help me. Everything is for His glory.

So, if you read all the way to the bottom here, I have a request of you: if you are going to pray for Mason and our family, put this at the top of the list: that our lives will reflect that our hope is only in God, no matter what our circumstance is, that we will always be faithful and obedient to Him.

Everything is for His glory.

And the doctor said...

2010-02-09T12:39:00.001-08:00

We are home. :-) Mason is so happy!

Right now, Mason and Daddy have gone to McDonalds for lunch and then he's off to school.

The neurologist came by and said she had looked at yesterday's EEG a bit. She will be going over it all in detail over the next week and get back to us. But from what she had already seen, it does not look good for surgery. She saw spikes on the EEG on both frontal lobes. They generally do the surgery if they see seizure activity on one side only. Occasionally they may do it if it's 90% on one side. So please pray that there is still a chance for surgery as she and her colleagues review the data. If the answer is no we will continue a lifetime of trying different meds, none of which will eliminate the seizures.

Next step: After the results are determined, and the answer is no, he will start a new medication that is not available in Canada. It would be ordered from Australia.

Thanks again for your prayers and support! :-)

Nap time!!!

Going Home!!!

2010-02-09T09:39:00.000-08:00

Mason's leads have been unhooked! We can see his fun green hair again! Mason and Asia are playing Wii while waiting for the neurologist to come by and then we're headed home.

He had a quite a few seizures during the night but didn't wake up until the big one at 6 am. Then another big one less than an hour later (different kind, too!). Then one more kind of seizure a while later. So we have all the seizures covered. :) What a great surprise for the EEG tech to come in around 9:15 and say we're going home! Thanks for all your prayers! And visits!

Well, time to pack...... :)

Bedtime day 1

2010-02-08T23:28:00.000-08:00

The end of the first day.

Socially, Mason has had a blast! Lots of visitors! Mason has been very well entertained! :) Thank you, Thank you, Thank you!! He's had lots of fun playing Wii, games, and toys. ( Now he wants a Wii!! wanting something he doesn't have is also developmental progress that is fairly recent :)

Mason has refused to use the bed. We got him in for a few minutes, then I put up one of the sides and that was it! Gone. Back on the floor mat. So that's his bed and play area while we're here. He's been really cooperative for the most part. He's stayed on the mat really well. A few rough moments here and there. I've discovered that if there are plenty of people here, he is quite content.

Seizures: :( Haven't seen much. He's had about 6 or 7 tiny ones. I have even tried traumatizing him to trigger a seizures. Making him really upset and to cry hard usually triggers a strong seizure at home. Didn't work. Wait and pray. Waking at night or early morning (5 or 6 am) is our best chance for a bigger seizure.

The picture of Mason in his ready jammies was taken 15 minutes ago, getting ready to go to sleep. He just konked out. He falls asleep fast. It's bright as day in here, and will be all night.

I'll be here on the blog soon after I know anything more. Right now I have people lined up to come in until Tuesday afternoon. If the doctors decide they need more data, I'll post that here and then I will need people to come in Tuesday mid-afternoon, evening, late evening, someone overnight, Wednesday morning and Wednesday early afternoon.

my turn for a few zzzz's

difficult morning

2010-02-08T16:19:00.000-08:00

The first half of the ride in went well. Asia and a friend came along. Half way in to Children's Mason wanted to go to sleep, which of course, he couldn't. We deprived him of sleep for two nights. A little while later he started the 'throw up cough'. I brought containers along. As soon as we got out of the car in the parking lot, he threw up. Being so over tired and getting upset at us for not letting him sleep caused it. That's happened before.

As soon as that was over, he felt great and went into the hospital quite happily. We went over to the play area and waited. After a while he suddenly decided he wanted to go home. After chasing him around (screaming) in the cafe and foyer of this big hospital, we finally got him settled and he dozed off. When we attempted to carry him in to his appointment(20 minutes late already) he woke up and started screaming again. We ended up strapping him into a wheelchair and racing to the EEG appointment, where he calmed right down. Spongebob helped! He let the technician prepare his head for the leads while in the wheelchair. But when it came time to glue, he freaked out. We got a hold of him and got him onto the table wrapped him in a sheet then a couple of layers of huge velcro straps. LOTS of crying and fighting. It took about an hour for the process.

Coming up to the room was not a problem and for the most part he has been playing well on a floor mat. He refuses to sit in the bed. He also keeps wanting to go home. There have been a few times that he has pulled at his 'pony tail' of wires. The little backpack that the wires are attached to gets him upset as well.

We've had various friends coming to help entertain Mason and bring toys to play with. This has been so wonderful! Mason really likes having visitors! And more are coming! :)

Asia will be staying overnight with me. What a helpful daughter she is!!!!

Mason has had 3 or 4 tiny seizures. So pray for some big ones!

Well, another visitor has arrived for Mason! Much excitement!

a little anxious

2010-02-07T23:16:00.000-08:00

...just a little....

lightheaded, feeling my heart race a bit, very scattered mind ( I'm use to some scattered mind:)

This heaviness has been hanging over me all day. Other than a few bits of distraction, toys, friends, watching the Olympic torch go past our house.

I keep talking to Mason about what is going to happen, and he seems to be sort of ok with it. I ask: where are you going? "hospital', what will the doctor do? he puts his hand on his head, what will Mason do? "cry".

Barney theology song: "can't go over it, can't go under it, can't go around it, have to go through it!" That silly little song ran through my head a lot in the early seizure years. But it really rang true. Sometimes God takes us over, under, or around our difficult situations, but often we have to "go through it".

From Romans 8: "...You are controlled by the Spirit if you have the Spirit of God living in you. (And remember that those who do not have the Spirit of Christ living in them do not belong to him at all.) ... For his Spirit joins with our spirit to affirm that we are God’s children. And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering."

This is reassuring to me. For I do have His Spirit in me and if He will have me sharing his glory and suffering with him, that means He is WITH ME. :)

hmmmm feeling a little lighter.....

2010-02-03T20:38:00.001-08:00

Well, I've been trying to prepare Mason for the hospital visit. Not going so well!! The last time we did the intensive monitoring was a few months before his Corpus Callosotomy a few years ago. At that time his comprehension was so limited that he didn't really know what was going on. This time he is very aware. Plus he's double the size and weight! And a strong fighter!

So I've been trying to describe what will be happening. Maybe if I talk about it enough he'll be ok with it. hahahahahaha

ok, back to reality..... he does understand what will be happening. The last EEG was in June. Although it was a 1 1/2 hour appointment and then went home.

2010-02-03T07:42:00.000-08:00

Hey everyone.

Well, we're only a few days away from Mason going into the hospital. I'm starting to get nervous. He's gonna fight.

the date: Monday, Feb 8 9:30 am until Tuesday morning at the earliest. There is potential to stay up to five days, but he's having enough seizures that I think the dr's will have enough data in the first day/night.

This will probably be our most difficult hospital visit yet.

the needs:

1. PRAY pray that Mason will cooperate and not be too traumatized. Also pray that he will have plenty of seizures on monday and upon waking up on tuesday.

2. people to come out and help to entertain him. He will get bored of me very quickly. He's going to want to pull the leads off his head. He also has to stay in one spot. That will be difficult for such an active boy. I'm getting together his games, puzzles, toys, movies etc. So if you can help with this, I would really appreciate it. Let me know, then I can schedule so that people are dispersed.

time slots: Monday afternoon, evening, late evening, early Tuesday morning (7?) later Tuesday morning, Tuesday afternoon. If we have to stay longer, I will let you know. If the cost of gas is an issue, I'd like to help pay for that.

I will have internet access at the hospital and will keep the blog updated.

Can it be True?!?!

2010-01-20T21:42:00.000-08:00

What would you do if something amazing happened that you never thought could happen? Something you never even dared to hope for? Can you think of something right now? We're in a small Bible study group with a couple of other families, kids and all, going through the book of Mark. Because we've read the stories many times over the years, they've lost some of their shock value. But while we were discussing these stories, adults and kids - and kids come up with some interesting concepts - I thought of the shock and surprise the people hanging around Jesus must have felt. Stories of a wild, crazy man who was so strong that he could break off the chains he was bound with, a woman suffering for years - having gone to every doctor, tried every treatment - and a little girl who died. With only a word, a command, a man instantly becomes sane, well. By only touching Jesus' clothes, a woman is healed of her illness. With a touch and a word, Jesus brings a little girl back to life.

Can you imagine the amazement these people experienced? Have you ever witnessed or heard first-hand of something almost to hard to believe? This is our God! He's unpredictable, does things His way, different each time, and I think he takes pleasure in surprising us. I know I have a blast surprising my kids with something I know they've longed for.

I am in the midst of feeling amazed, surprised and I really find it hard to believe. Mason is toilet trained! We don't have to remind him to go to the bathroom, he goes on his own. He hasn't had an accident in two or three weeks. And he's even dry overnight quite often!

How often I have prayed and thought, 'if only Mason would be potty trained, even for only the daytimes', but after changing his diapers for nearly 11 years, that seemed pretty impossible. You know, it's not that I didn't believe it could happen, rather it's that we don't always get what we want, and we usually don't know what we really need. Don't get me wrong, I have begged and cried for this to happen. How often did the woman who touched Jesus pray that God would heal her? 12 years worth.

Once again, God is, I believe, grinning from ear to ear watching us in our amazement. We're getting excited over poop in the toilet and giving 'poop gifts'! Hearing squeals of delight, "I peed!! WOO HOO!!"

So why does God heal and give us these amazing surprises? Want to know how I understand it? (then keep reading... :)

We live in a broken world. It wasn't always that way. God created the heavens and the earth and designed it for His greatest creation, mankind. The first couple messed it up by doing the one thing God told them not to do, resulting the introduction of sin into His perfect creation. This also broke the relationship God had with the first man and woman. So since that time, He has been in the process of restoration. He gives us opportunity to a restored relationship with Him, the Father, through Jesus. In His death and return to life, Jesus took onto himself the sin of the world, all of it for all time. As we acknowledge this and accept it, the Father removes our sin - our shortfall of being able to attain perfection and holiness, no matter how hard we try - and as a result, accepts us into a relationship with Him. He replaces what He took away - sin - with Himself, the Holy Spirit. Thus we get a taste of what a complete relationship will be when He returns and restores the earth at the end of time.

I believe surprises like healing the sick and toilet training kids with special needs give us a glimpse of what it will be like in that day. We were living in a constant state of changing diapers (not baby ones anymore) and cleaning up horrific messes. Our world is in a constant state of things being as they should not be. I now have a stack of 'good nites' I don't need. The miracles around us reassure us that soon the world will once again be as it was designed. Little reminders that God is at work.

We still see many miracles happening with Mason. God is constantly at work. He's always there with us in the worst of times. There's an awful lot that I just don't understand, but I trust Him. he loves my kids more that I ever could. I trust Him.

Go and read Mark 5. Imagine yourself in the place of the person healed, or in the place of the people watching it. Watch what Jesus is doing in the stories. Look for what He's doing today. He's doing something amazing!

Let your mouth drop in amazement.......

Mason Hospital update

2010-01-18T21:40:00.000-08:00

Here's a little update on the up-coming hospital stay.

I received a phone call from our neurologist's nurse today. They have a little girl that lives up north that is doing very poorly, having drop seizures (like Mason used to have) and they would like to get her in as soon as possible for the Intensive monitoring because they want to do the Corpus Callosotomy on her asap. So Mason's appointment may be moved back by two weeks. We're fine with that, if it means that little girl can get in sooner. :)

There is a chance they can book both Mason and that little girl for Monday. I really have no preference, other than I've lined up a bunch of people to come in and visit Mason. But hopefully that could easily be changed. I should know in the next couple of days. I think I slightly lean to keeping the current date.

I asked a few questions about future dates:

The doctors will most likely be conferencing to discuss Mason at the end of February. If they decide he is a good candidate for the resection surgery (remove a portion of his brain where the seizures are originating), it would be about 6 - 8 weeks later. So that would put us in April for brain surgery.

I'm not sure just how I feel about the possibility of brain surgery again, mostly it doesn't feel real at all. Like looking at the calendar and seeing my girls' upcoming dentist appointment. But thinking of the possibility of no seizures, or even less seizures..... I can't get my head wrapped around that.

So I ask for your prayers for the upcoming appointment, whichever date it happens to be. Pray for the little girl that needs to get in urgently. Pray for peace for our family as we contemplate the surgery. It doesn't feel desperate like last time. Will that affect the decision?

Also pray for the start of Imagine...Respite. A new thing for families in the community that have a child with special needs or chronic health issues. there are many families that do not receive government funded respite services (so the parents get a break), so they will be able to drop off their kids (and siblings) for an evening once a month and get a break. The very first one is this Friday. If you know of any families that could use this, email me at imagine@northview.org for more information. :)

Mason News Flash

2010-01-08T21:36:00.000-08:00

Ok, I've neglected updating the blog, but will do so SOON with all the details, or at least the important ones.....

Mason is very nearly toilet trained!!!!!!! I've been imagining changing diapers on a 17 year old and so on.

I have a request of you. (Jake, you can fly in from Spain, right? Mason would love to have you goofing off with him!)

On January 25, a Monday, Mason will be in at Children's Hospital for Intensive Monitoring. Hopefully only for a day, but could be longer. He will be hooked up to 25 - 30 leads (wires) on his head, plus he must stay in one area, like the bed, so that he remains within view of the video camera. I really really need help this time. he's getting bigger and can be strongwilled.....

I would like to 'invite' you to come in shifts to help entertain him. and give me a few minutes here and there to nap. I expect we'll be in overnight. The lights will remain on and bright all night. He needs to be watched closely the whole time.

So...... if you could come in at any point, say Monday or Tuesday, day or night, please let me know. Once you have emailed me with your availabilites, I will put together a schedule so that Mason is entertained a lot. Mommy gets boring very quickly. If you cannot afford the cost of the gas to go in, I am willing to help with that.

The purpose for this testing is to see if Mason is a candadate for brain surgery again... different kind than he already had. One step at a time......

Thanks!

Oh yeah, and pray for lots of seizures during the hospital stay. :) Once we're home, pray the opposite :)

Shirley

Jesus and Mason

2009-08-16T20:17:00.000-07:00

One of the things that is hard to know is how Mason and God relate to each other. We don't know what Mason understands about Jesus: that he is God, came to earth as a teacher and redeemer of all those who accept him. Difficult to define in one sentence, but even more difficult to help someone like Mason understand. So the purpose of today's blog is to journal a few 'Jesus and Mason' moments that we have been privileged to see.

With Mason being able to attend church in the Imagine classroom, his awareness of God has increased. I really noticed this one time when I was reading a little book called "God Made Me" to him. Partway through, Mason says, "Church". He was making the connection of hearing about God at church and at home. Very exciting!

Last weekend at church, the girls helped out with Mason, but I also took him up to the Imagine classroom for a bit. Asia came up after a while and took Mason back down with her. I went looking for them soon after, expecting to find them on a couch in the foyer. I didn't see them, so I circled the church a few times. I finally found them back in the pew with Sydney. (Daryl was working in the power point booth) Communion had just finished. Later the girls told me that Mason took communion. He ate the cracker right away, but they got him to wait with the grape juice and drank it with everyone else. I pondered what this meant, not really knowing what to think of it. It turned out that before being served the elements, the girls asked Mason if he loved Jesus, "Yes", then they asked him if Jesus loved him, "Yes". Will Mason ever understand more than this? Who knows. Does he have a relationship with Jesus? Only the two of them will ever know what that exactly looks like, but from what I've seen, I'm sure he does.

The very first time that Mason raised his hands in worship was in church. I don't remember the song, but part-way through it his little hand slowly began to lift up. The way Mason watched his hand go up, it was almost as though God was helping him by pulling it up. Ever since then, Mason frequently lifts his hand or hands during songs that worship God, whether in church or driving in the car or wherever. One time as we were driving, the song Lifesong by Casting Crowns came on. (I have the lyrics here below) suddenly I saw this little hand lifted high in my rear-view mirror. It really hit me there that whatever Mason's life may be like or may seem to lack, his lifesong is reflecting God in his life.

Lifesong lyrics

Empty hands held high
Such small sacrifice
If not joined with my life
I sing in vain tonight

May the words I say
And the things I do
Make my lifesong sing
Bring a smile to You

Let my lifesong sing to You
Let my lifesong sing to You
I want to sign Your name to the end of this day
Knowing that my heart was true
Let my lifesong sing to You

Lord I give my life
A living sacrifice
To reach a world in need
To be Your hands and feet

So may the words I say
And the things I do
Make my lifesong sing
Bring a smile to You

Hallelujah
Hallelujah
Let my lifesong sing to You

Camp

2009-07-30T00:55:00.000-07:00

OK, I'm a little slow on updating about Mason's week at camp. Well, I've been away. I'm home for a couple of days, then off again to the trailer. Anyway.....

Mason's Week: Mason did really well at camp. I was expecting him to cry when he saw me. That didn't happen. Want to know the story of what he actually did when we arrived? I took Asia, Sydney and Grandma along with me. Sydney was actually glad Grandpa couldn't make it because she wanted Mason's attention. That girl missed her brother, big-time! If Grandpa would have been there, Mason would have ignored all the rest of us. So I walked into his cabin first, noticed some people sitting on the couches to the right, so I looked that way. The girls and Grandma were right behind me when I heard Mason's voice coming from the other direction. I turned toward his voice, held out my arms - ready for a big hug. He yelled out "MAMA" and ran into Grandma's arms! Right past me!!! Didn't even pause to look at me!! Big squishy hug. So you think that he would run straight into my arms after that, right? Not! He ran over to one of his councilors and was telling her "Mama! Mama!". Next he gave Sydney a big hug. Finally I told him to give me a hug. That's when he noticed me.

I'll get over it......

Everyone there was sort of out-of-it-exhausted from a full week with kids, so I didn't get that much information. Paul filled me in on some stuff. Mason got homesick the last two days, asking for Mommy a lot. (not Mama .... he he he). He would not swim in the lake, but he loved throwing rocks in. Loved to feed the horses, but would not ride one. Slept well at night. They had a big food fight at dinner on the last day. Mason did not like that, so he and Paul went and did something else. Mason loved archery and kept asking for more of that. I don't know how he did, though, if he even got close to the target! Paul helped him hand-over-hand with it, though.

He had a couple of bandages on his knees from falling down. :) I smile because it's nice to see him get owies from regular boy stuff, rather than seizures. :) And he let them put bandages on him! He won't let me!! Even the Sponge Bob ones!

Mason came home with two bracelets he made. Obviously with a LOT of help. He really likes them and shows them to anyone who asks.

Mommy and Daddy's Week: I actually did a lot better with the separation than I thought I would. I decided that I would not try to contact the camp until half-way through the week. I thought about him a lot. Daddy, on the other hand, was a little more anxious..... and He kept wanting me to email the camp and see how Mason was doing. Daryl would also start to get a sad look on his face and say, "I wonder how Mason is doing." and "Do you think he's ok?". I set him straight and told him not to talk that way. I didn't want to loose it. We did get an email part way through the week. It was quite generic, Mason was participating in activities and happy. But, as they told me, no news is good news! And that is the news we received all week! :)

I had big plans to start packing. Didn't pack a single thing. I crashed. Did nothing. Napped. I just had no energy. I started getting some energy on day 4, and a little more on day 5. On day 6, Mason came home. I do feel better now for all that rest... and sleeping through the night for SIX days STRAIGHT! Woo Hoo!!!

Asia and Sydney's Week: Asia has a summer job babysitting Monday to Friday, all day, for most of the summer. So she didn't really miss Mason. She's just busy and tired. A great experience for her! At the end of the second day, Sydney said that the house was so quiet, and she had nothing to do. I asked her if she missed Mason. Yup she did. Sydney mentioned that she missed Mason nearly every day. She, Mason and I went down the the trailer for the same day that Mason came home. Sydney got two straight days of playing with Mason. happy girl:)

I have been very impressed with the the staff and volunteers at Zajac Ranch. They are very familiar with parents like me.... nervous first timers! And even better, they are really in tune with the kids. Working at a camp for kids with disabilities and chronic medical conditions would be a lot more intense than a regular camp.

Mason smiles when we talk about camp. So hopefully he can go again next year!

Pray for Hope

2009-07-29T11:09:00.000-07:00

I've been hearing the word 'hope' a little more often lately. I question some of the ways it's been tossed around. But then, what really is hope? The dictionary explains it as a feeling, a wish or desire. But how does one hope when those feelings cannot be mustered up? How does God grant hope? That, I believe, is a journey unique to each person and circumstance. I also believe that those answers can only be found in God's Word. Not by doing certain things, or trying to feel a certain way, or even some cute little story about it. I am thinking of three women right now that must find God's Hope in new or ongoing difficult journeys. I would like to take this opportunity to ask you to pray for them.

The first is my Mom. As you know her husband recently died. This is the second time for her, and I can't imagine what she's going through.

The second is my sister's best friend, Shawna. I also babysat her many years ago. She is blogging an incredibly difficult journey. Her most recent blog on hope has been on my mind a lot. Click here: the road less travelled

The third one is my friend Kristy in Alabama. I have introduced you to her son, little Jon Andrew in Alabama. He has the same condition as Mason does. Here is a recent email from her:

Hey All,

Wanted to ask that if you have a chance, pray that the Lord would protect Jon Andrew the week of Aug 3rd-7th. We will be at Children's hospital in Birmingham doing a desensitization procedure with a medicine he has been allergic to in the past. He will be in the ICU for about 2 days while beginning the process and then will move to a regular room. We are praying that his body will be able to adapt to this medicine that has helped him in the past with seizures and behaviors. Pray that he will not have any severe responses to trying the med again ie) shock, cardiac arrest, steven-johnson syndrome. This is one of our last options before moving towards a brain surgery in the next year (we will only do this if absolutely necessary because my neuro isn't a big fan of the surgery, but we are running out of options).

Another important part of this puzzle is that my doctors cannot find any allergy studies done in the world (literally) that have ever been done with this medicine (Banzel). Lots of times they have done the desensitization process with penicilin, aspirin, a few other seizure meds, but not this particular med. In other words, this is experimental with JA next week and very risky. Please pray for us.

Day 1

2009-07-14T17:14:00.000-07:00

It's been 30 hours since I last saw my boy. And the camp hasn't phone us yet! That's good news! It means he is having a good time and the staff and volunteers are able to handle any issues that arise.

The drop off went...... well, it eventually went well. Mason slept for part of the ride in. He woke just before we got there. We pulled in to the check-in area, the medical building. We met Paul, a young guy that will be Mason's personal caregiver. He seemed very nice. Kind of a quiet, calming type. We went into the building, checked in his medication, did the head lice check etc. Mason had a bigger seizure during this time, so they could see what they look like, so that was a good thing. It was most likely triggered from waking up. We went out to get his luggage and he went straight into the car and buckled up and said "home". Not what I expected!

So over the next 30 minutes various people tried to talk him into getting out of the car, they took his luggage to his lodge, I drove over to his lodge, people continued talking to him. I went into the lodge and talked to Paul, Mason stayed in the car. One of his counsellors drew his attention to the horses. THAT finally got his attention! He wrenched his body to look, but was stuck in his seatbelt. I told him that he would have to take off the seatbelt to see. He unclicked himself in a flash! He got out of the car for a better look. We were parked just across the driveway from the fence, so Mason, Paul, and I headed over for a closer look. The horse was a distance away, but we walked up to another one, nearer to the fence (about 30 feet away). Mason pulled up some dandelions to feed the horse. It was more interested in the hay. I told Paul more about Mason.

I realized that my car door was still open, so I told Mason I would be right back, and that he was supposed to stay with Paul. He said, "OK". I chatted for a moment with Paul when Mason suddenly said, "go". So I told him goodbye and he replied with the same. It was apparent that he was comfortable with Paul and the environment. So I gave him some hugs and kisses (which he immediately wiped off with hysterical laughter - our own little game). I headed back to my car with many waves from him. As I drove past the pair on my way out, I waved, Mason waved, and that was it.

I had a moment where I almost started crying as I drove along the driveway. Quite a range of emotions going on.

I slept good last night, no anxiety on my part. It's quite different putting a child like Mason than the girls into the hands of strangers. I've never been away from him this long ( six nights - five is the longest), he's never been with strangers over night, when I have been away, it's been with people I know and I can have contact with them and Mason at any time.

This is a good thing! Even though it's difficult. It's good for both Mason and us to have this separation.

Off to Camp

2009-07-13T00:40:00.000-07:00

I am in the middle of typing up an "All About Mason" booklet to go along with Mason to camp tomorrow. I'm on to page 3 already. Hopefully not too much more!

Yup, Mason is off to Zajac Ranch Camp tomorrow afternoon! He knows that he's going to camp for a sleepover. He just doesn't realize it will be 6 sleepovers! I was somewhat nervous until Daryl, Mason and I took a drive out there on Saturday to meet with the camp director, Andrew. Really nice young guy. He toured us around, introduced us to various staff and volunteers, including the nurses and medical staff. They have a different group each week and Mason is going to Epilepsy week. They have extra medical staff on. I think he said two doctors and two nurses. They have a helicopter on standby in case of emergency. 26 kids and 31 staff and volunteers. Mason will have a one-on-one caregiver the whole time. They all go through extensive training. Just being there has eased my mind and heart a lot. Now I have to worry about Daryl! I told him tonight that he can't rely on me to calm any anxieties he has about Mason being away at camp, an hour away, in a strange place, with strangers looking after him. Andrew said they have very few issues with kids being homesick. They are all trained to deal with that. The parents are the ones that tend to have problems, apparently. The kids have no phone calls or emails or contact with anyone outside the camp. If we hear nothing, that's a good thing!

I think Mason will have a blast! He'll be homesick at times, but I think they'll be able to deal with it. :)

I copied this blurb off the Zajac website. Click on it to see more of what it's about. It's quite an amazing place!

The Zajac Ranch for Children is a summer camp set on the shores of Stave Lake in Mission, BC. The ranch serves children with serious and chronic illnesses and disabilities. The Zajac Ranch seeks to normalize and enhance the lives of the children that attend camp by offering innovative and unique programs in a caring and supportive environment.

I'm adding this later.... I'm up to page 4 on my "about Mason" booklet.

AND, as I know that some of you will comment..... I am still up at 2:30 am. Big thunder storm happening a few miles away, but noisy here anyway. ( I'm counting the seconds between the flash of lightening and the thunder) No point in going to bed if one of the kids wakes up scared...... I'll go to bed when it's done. After all, I will get a BIG chance to catch up on sleep this next week!

EEG and the Results

2009-06-25T22:25:00.000-07:00

(click on the picture to zoom in)

So how did it go? Better than anticipated. :) Mason stayed awake the whole drive in, thanks to Judy, who kept him quite entertained in the back seat. She had to pull out the heavy equipment at one point as he started to get dozy. The wet face cloth, the best tool to keep someone awake. It turned into a game with Mason fake sleeping. He went to sleep at 12:30 last night, and I woke him around 6:30ish. The boy was actually quite happy all morning and had fun with Noah who came to play (and help keep him awake).

The EEG went well today, as far as EEG's go. Just before we entered the room, Mason saw the wires and stuff and turned around to 'leave'.... kicking, screaming, and attempting to run. But I'm still stronger than he is! I picked up all 83 pounds of Mason and carried him onto the bed. Renee (yes we got our favorite technician!! She did Mason's first ever EEG) got out the big, full body velcro straps and we wrapped him up, screaming and fighting the whole way. I lay across his chest, and Judy lay across his legs. Renee did a good job of following wherever his head went. First she marked all the spots with a red marker. Then she put something on each spot with a Q-tip - I think it must have been alcohol. Then she put a little blob of paste on each spot to which she attached a lead (26 in all). Those on his face needed to be taped as well. One on his chest to monitor his heart rate. He really did not like the mesh toque she pulled over his head to keep all the wires in place. Mason watched one of his favorite shows the whole time, SpongeBob. I didn't check the time, but it didn't take long for him to fall asleep. He got a 20 or 30 minute nap, I think. (my watch battery died this morning)

Mason did not have any seizures during this time. He was quite cooperative while Renee took the leads off and cleaned his hair. He knew it was almost over. He was, of course his normal, happy, friendly, self as soon as he got off that bed. He even said thank you.

The appointment with the neurologist was at 4. We've known her nurse, Kelly, since Mason's second stay in the hospital, one month after the fist one. So we always have a good chat along with the business at hand.

Two things have resulted from today's appointment.

We're starting a new medication. It's actually an old one that was more commonly used for absence seizures, which Mason does not have any more. It was one I had not heard of before. They are seeing some positive results with it in other forms of Epilepsy. It also has positive behavioral side effects. I did not hesitate to say yes to Dr. Connolly's suggestion!

The EEG was similar to the last one over a year ago. There is still a lot of abnormal electrical activity on the left side, but she seems to think it's more related to behavior than seizure activity. There also seems to be more of a focal point - the origin of the seizures. So she wants to do another session of intensive monitoring. So we may be doing that in Fall or Winter. That is basically a continuous EEG and video for the span of a day or two, or more, depending on how many seizures they capture. It also means that Mason has to stay in the hospital bed for that time because he has to remain on the video all the time. The purpose for this is to see if he could be a candidate for another brain surgery. If they can localize where the seizures are originating, they would remove that portion of his brain in hopes of stopping the seizures all together. The surgery he had 3 1/2 years ago has settled his seizure so much that his brain is not such a mess of nasty electrical activity.

We did all this testing many years ago which revealed abnormalities in too many areas of his brain. They need to be on one side for the surgery to be most effective. Even then, nothing is guaranteed. So we'll see. Brain surgery would be scarier next time because we're not as desperate now. Things are not nearly as bad as they were before the Corpus Callosotomy. Yet if there is the possibility of stopping the seizures...... Anyway, I have learned to not get too excited when we start thinking of another treatment. We'll just wait see what comes of it all.

In the mean time, there is another appointment with the Autism clinic at Sunny Hill in Vancouver on July 16. Then some kind of psychological assessment, probably in August. We are moving in August - we get possession of our townhouse on August 19 and we have to be out of our house August 29. That gives us time to install central air and hardwood throughout the main floor, hopefully cutting down on Mason's allergies and to make for easier leaky diaper clean-up. Daryl and I installed the hardwood in our current family room a couple of years ago, and we did a good job and had lots of fun! Well, I had lots of fun ... don't ask Daryl what he thought...

Well, I shall head off to bed. I'm hoping that Mason will sleep in really well all night and late into the morning! Who knows, though. :) At least it went better than expected today! :)

Thanks for praying!!!!!!!!!!

EEG and Dr Appt

2009-06-24T21:45:00.000-07:00

Mason has an EEG lined up for Thursday, June 25 at 1 pm then an appointment with the neurologist at 4. EEG's are very traumatic for Mason .... and me. I posted what happens in an EEG in Jan 2008. Mason has had a lot of EEG's, not one has been easy.

We are having this done because his seizures have been up in general. We got in quite quickly. Three weeks, rather than 3 months. I'm trying to get out of denial. Although the seizures are up, they are still no where near what they were before surgery. So I justify it that way. Not necessarily what I should be doing!

This is what happens: After sleep-depriving him tonight and keeping him awake for the drive in to Children's Hospital (over an hour away), we strap him down in a full body velcro kind of thing, shoulder to feet, I lay on him, trying to calm him down, as he is screaming the whole time, face beet red (one time he even had peticial hemorrhaging - tiny blood vessels bursting all over his face because he screamed so hard and so long). So for the next 1/2 hour this goes on while the EEG technician marks his head and then glues 25 - 30 leads (wires) onto his head. These leads are all attached to a computer. Then the technician ( I hope it's Renee) records various stuff on the computer while watching everything. They look for changes in the brain waves while he's awake, as he's falling asleep, during sleep, waking, then awake. They flash lights at various speeds to see if that triggers anything. Sleep deprivation can often trigger seizures, and the stress of strapping him down can actually work in our benefit if it triggers more seizures. During this testing time, pray for more seizures!

Mason's vocal tic is also back. Not sure why. It's a Tourette's type of vocal noise he makes randomly.

Home Sweet Home (and the LIST)

2009-06-22T21:55:00.000-07:00

Home Sweet Home. I thought I would get an endless hug and cuddle from my little boy when he first saw me. Nawwww. Quick hug for me and his sisters then he wanted to play with 'Itchy' (that's what he calls Sydney).

I woke up with very sore muscles on Friday. Especially my legs. I could barely get off the couch! My family showed their love to me by laughing when I asked them to help me up! I had trouble walking and even more trouble doing stairs or even stepping up on the curb when we went out for a short slow walk. So I guess I had a bigger workout wrestling Mason than I thought! Advil slightly took the edge off the pain, but thankfully I'm almost back to normal again. (Connie, you're not allowed to comment on that!!)

Sydney and her cousin crashed on the trampoline yesterday. Dani's tooth is a little loose, and Sydney has a cut in her head the same size as Dani's tooth. There was a little bit of blood, and a little bit of panic, but it didn't take long for the five girls to get back to playing board games on the patio! :)

Good thing Sydney reminded me that we wanted to write down the sensory items that we think would bother Mason! I forgot to bring a notebook, so I used a puke bag. A clean one. Not the one Sydney used shortly after take off leaving Abbotsford on Thursday morning!!

So here is

The List:

~ there is a little metal plate on the floor between the airport floor and the ramp/tunnel to the door of the plane. As people pulled their travel bags across it, it made a metallic sort of noise.

~ A/C. The hissing sound of the air circulation system on the plane. ssssssssssssssssssssssss

~ Engines starting and revving.

~ Cabin lights turning off and on.

~ Driving out toward the runway and picking up speed.

~ Various sound changes in the air system.

~ Driving along and feeling the bumpy road.

~ Plane turning the corner (we're still on the ground)

~ Engines getting louder.

~ Getting ready to go - Really LOUD engines.

~ Picking up speed at a rapid pace.

~ Bumpy road.

~ Lift off.

(is your anxiety increasing just reading this?)

~ The steep angle of the plane as we rise up to the sky

~ Ears popping

~ Mild turbulence as we climbed through the clouds. The plane was wobbly and lurching.

~ Staying in the seat and keeping the seatbelt on would have been difficult for Mason.

~ Air pockets - we could feel the plane drop at times.

~ Constant vibrating.

~ Most of the flight was quite smooth.

~ Constant loud humming noise.

~ Occasional sideways and up & down movement.

Descent:

~ Slowing down, strong vibrations.

~ Wheels lowering

~ 'Braking', slowing down

~ Flaps on wings adjusting. We could feel, hear and see it happen.

~ Wheels hitting the ground.

~ LOUD engine sounds during the fast slowing down time.

Yikes! That's a lot of sensory issues!!

Well, I'm off to bed. Hopefully this post made sense, as I can barely keep my eyes open. I don't know why, though. I slept GREAT at my mom's house. Nice and cold in the basement bedroom, quiet, no little boy waking me up! I slept better than I usually do at home!

G'night

What on Earth was I THINKING?!?!?!?!?!

2009-06-19T19:39:00.000-07:00

The girls and I took off from Abbotsford at 6:30 am on Thursday. We were much more in tune with the huge variety of sounds and motions that occur during a flight. We were constantly saying "Mason would not like that!!" There is so much that we just don't notice. Obviously I have never noticed those sounds that way before. I am bringing a note book and pen for the flight back home and write them all down. It's unlikely Mason will ever fly.

I have come to realize that Mason's sensory issues have increased dramatically over the last 6 months or probably longer. Just a part of life that we have to adjust to and always be on the alert for when he is with us.

Our flight landed right on time in Winnipeg, at 12:21. Lisa, my sister-in-law, picked us up and hastened to Steinbach. Asia, Sydney, and I changed in the van enroute. We made it to the church at 1:50. The funeral was scheduled for 2. We started a little late, but not bad.

Thanks for your prayers. Although things did not go as we planned, it is still well. Mason is VERY happy to be at home with Daddy for the nights, and out with various people and school the rest of the time. He and Daddy were talking about it. Mason described it to Daryl "sssssssssssssssssssss".

Plan B

2009-06-17T20:59:00.001-07:00

Yup, plan A failed. We are back home. Think of your worst nightmare times 10. Neither Daryl or I thought it could even resemble being this bad.

It didn't start off that way, though.

Mason had a great time putting the luggage onto the scale and then onto the conveyer belt and watching it disappear! We had something to eat, wandered around a bit then off to check in. He was having a lot of trouble 'waiting' in line. There was a group of young men in front of me and, as I'm trying to keep Mason from taking off on me, I asked them if it was ok if I went ahead. They were ok with it. Asia kept beeping, and even got slightly frisked! Metal buttons and stuff. Mason wouldn't go through, so I did, hoping he would come to me. Finally one of the people working there asked another one if it was ok if I carried him through. So that worked. Mason had no problem with that.

We walked down the hall towards our gate. The view through the huge windows was great! Mason LOVES looking at planes! And the people driving around pulling carts of luggage. "work" is what Mason kept saying quite intrigued by it all.

So we were the first to start boarding. Mason did just fine for the first half of the tunnel ramp. Then he started hearing new sounds and was hesitant. I carried him the rest of the way. He really started getting worked up just before we got to the door. I thought he would calm down once we got to our seats. We got the bulkhead seats and he was screaming before we could even sit down. I wrestled (that word is understated) with my screaming boy until everyone had boarded. I lost all track of time, so I don't know how long this went on for. Soon the pilot came and had a chat with me. They would not be able to take off with Mason in such a state. So I decided to get off before I got kicked off. My legs were shaking so much I could barely walk. I think I started crying the moment we got off the plane. I was so focused on trying to calm Mason down I had no time to feel sorry for myself until it was over. We delayed the flight by half an hour as they had to remove our luggage. We also bumped another flight to a different boarding gate. So we caused quite a commotion! I kept apologizing and the young man told me it happens sometimes, not to worry. I feel really bad.

The girls headed back to the waiting room with Mason while I gathered our stuff and picked up all the broken pieces of me. I was very impressed with the West Jet people who were incredibly helpful! Mason, of course was all happy and saying "hi" to people once he was in the waiting room!

The young man who helped me also rebooked our flights, sans Mason. So the girls and I are heading out from Abbotsford at 6:30 am with one stop in Calgary then arriving in Winnipeg at 12:21 and off to the funeral at 2.

We are coming back on Monday afternoon, now. A week is a long time to be that far away from Mason. Trena, someone who takes Mason for respite and is a TA at his school, took it upon herself to phone around and arrange availabilities with other respite people, so that relieved me of a lot of work tonight!

So the prayer list has changed:

Mason will not have problems with his allergies.

Mason's seizures will remain 'stable'.

Mason will have fun!

I won't be anxious.

Thank you, all!!!

We won't be trying that again! But now we know.

To Our Glorious and Blessed God....

2009-06-16T09:42:00.000-07:00

There has been a prayer, by John Wesley, that has been on my heart a lot lately and influenced me. No matter what the circumstances, there is nothing so wonderful or so powerful to be an instrument of God, in all capacities. Especially in our weaknesses. That is where we see His most incredible work in us. But, we must first go to Him with an attitude of surrender and trust Him no matter what. Embrace the trials and struggles in your life! Don't run from them and try to get out of it! Surrender and wait...

I dare you to make this prayer a part of your life:

I am no longer mine but Yours.

Put me to what You will.

Put me to doing. Put me to suffering.

Let me be employed for You, or laid aside for You,

Exalted for You, or brought low for You.

Let me be full, let me be empty.

Let me have all things, let me have nothing.

I freely and wholeheartedly yield all things to

Your pleasure and disposal.

And now, glorious and blessed God,

Father, Son, and Holy Spirit,

You are mine and I am Yours. So be it.

And this covenant now made on earth,

Let it be satisfied in Heaven. Amen.

Trip to Manitoba

2009-06-15T22:00:00.000-07:00

My step dad died this past weekend. :( On to Phase 2 of his life. :)

The kids and I are flying off to Winnipeg on Wednesday, leaving from Vancouver because we can get a direct flight. I have decided to bring Mason along. leaving him behind in the care of various people or taking him along are equally stressful, so it was a difficult decision. He hasn't flown in over 7 years. Last time was to my dad's funeral and then 3 days after we got home, Mason and I flew to Detroit for tests. He was 2 1/2 then. Quite a bit smaller!

The funeral is on Thursday.

In all of this, we sold our house and are finalizing the details on the next place. And Daryl started his new, part time, job today. Asia's teacher gladly made rearrangements for her Thursday exam. She has one Wednesday afternoon and then we head off to Vancouver.

Here's a detailed prayer request:

Leave: Wednesday evening on June 17: (Return: Wednesday afternoon on June 24)

That Mason will go into the airport (noise). 4pm or so (noonish)

That Mason will go through the tunnel and onto the plane. 6pm or so (2ish)

That Mason will go down the isle to our seats.

That we will receive the bulkhead as I requested.

If we don't get the bulkhead, that the seating will work well for us and Mason won't kick the seat in front of us.

That taking off won't bother him. 6:20 (2:40 pm - 12:40 BC time)

That Mason won't react to the sound sensory issues that will be on the flight.

That Mason will be immersed in watching "Treehouse" on the flight.

That Mason, I, and the girls will enjoy the flight! We are not going to tell him he's on a plane

Landing at 11 pm in Manitoba 9 pm BC time (Landing back in Vancouver at 3:40pm)

While in Manitoba:

That Mason will sleep well.

That Mason will not react to all the busyness that will be going on at my mom's house.

That Mason won't have meltdowns because he can't have Daddy. He's a big daddy's boy right now.

They have Mosquitos. Mason screams like a little girl if something flies past him.

That Mason won't have too many seizures from all the stress and changes.

He won't be going to the funeral, My sister-in-law will look after him.

There's probably more.

And to think that last Monday or Tuesday I told someone that it would be nice if our lives could have a plateau for a few weeks! I guess not..... I wonder what God is up to? Hmmmmmmmm

Look further down to May 11......

It is still "well with my soul".....

Autism Assessment

2009-05-26T23:33:00.000-07:00

Ok, this is going to be another one of those long rambling posts of mine.

Grab a coffee and sit down....

Blogging about Mason has three purposes. 1. inform and update family and friends (and total strangers, too!) 2. It helps me to process what we're going through. 3. Point us all, that's you the reader and me the writer... point us to God. I see so many itty bitty little details (and some big ones) that are evidence of his handiwork. I hope you notice them!

Today was the Autism assessment at Sunny Hill Hospital in Vancouver. It's a part of Children's Hospital, but a different campus. I'll give the quick overview, then the details.

~ Easy drive in and home - good traffic - roughly an hour

~ 4 1/2 hour appointment

~ 2 doctors

~ Lots of toys and playing with one of the doctors (Mason not me!)

~ Almost two hours of questions that I had to answer.

~ Result... There are three areas that they look at for Autism. Communication, Social, and Behavioural. Mason fits into all three for Autism.

~ New BIG learning curve

~ Filled out forms for funding

~ They faxed it off and we will get funding for the full month of May

~ $6,000 per year. We can go on a vacation!! LOL, I wish...... I have to be accountable for where it's spent. They set the rules of what that is. I don't know what that will all entail, but therapy for social and behaviour will be the focus.

~ Next appointment will be in July where I will get all the details. I could have had it sooner, but June is a busy month, and I don't want to think about the Autism stuff yet.

~ I'm still flying on adrenaline

~ It's after midnight.....

Ok, The Details

Are you still with me?

First I'm really thankful that this process has gone REALLY fast. That's not the norm in getting a diagnosis for Autism. Mason's psychiatrist referred us in (I think) February. (I'm too lazy to check my past posts right now.) So that's only 3 months.

Mason really had a fun day. Any time someone gives him full attention he's a happy camper. The doctor looked like he was having a blast, too!

They asked me a ton of questions about everything. What are some examples?.... Fixations: Mason likes doors closed. There are some that stay open that he's ok with, but he made sure doors were being closed while at Sunny Hill! There were a lot of questions of how he interacted/played with other kids. He's quite bossy and has to play his own way. He can't handle playing what someone else wants to. That was something I just thought he would eventually grow out of. Guess not! Gotta pay a trained person to try and teach him that. There were a lot more, but I've gone blank. (that's not unusual)

The result: I was surprised when the doctor said that Mason met the criteria for Autism. We've focused on the seizures for so long, that the behaviours have always been secondary and so I haven't paid super close attention to that. A few minutes in I almost started crying, not because I was upset, because it was an emotional rush. I've been suppressing it all evening. Saving it for tomorrow afternoon.

I don't fully know how I feel about this diagnosis right now. Check back in a week or two, I may or may not know more then. It is a good thing because we will get funding and help for Mason.

Learning Curve

Something else occurred to me just a short time ago. All these years, starting with Infantile Spasms then as it progressed into Lennox Gastaut Syndrome, there has never been any type of predictability. I always thought that if he had something like Down's Syndrome, there is a 'list' of things that are common with it. There is some level of predictability. With LGS the only prognosis is: 'it depends if we get seizure control". There are three things with IS and LGS: Resistant to treatment, severe developmental delay and what the seizures look like. LGS can have up to five seizure types. Mason had them all (before surgery). We've just never had any idea of what to expect for the near or distant future. That is something that we have literally given over to God; to trust him with Mason's future. That involves letting go of our need to know what that could look like. We don't even know to what degree Mason's seizures will return. It could stay mild, or ......

Now with an Autism diagnosis, we get that 'list'! I know, I know, .... every child with Autism is very different. But there is an extensive list of patterns that kids with Autism follow. We'll see which of those patterns will be specific to Mason. But at least there's a list to look at! :) That list will be able to explain a lot of things about Mason that we have always thought of as random or caused by the seizures. I'm already connecting the dots on some things, and am going to ask the doctors about others.

Next Steps

The forms for the funding have already been sent off. They wanted that to get in asap so that we would get the funding for May, even though we're at the end of the month. The appointment that we will have in July will be to give us all the details on Autism itself, how to spend the funding, other services and resources we will have access to. And some other stuff that I've probably forgotten. Nope, no vacation.....

It's going to be a lot of work organizing and acquiring people to do the therapies with Mason.

Through this all, Mason is still Mason. Created in God's image. Created by God for a purpose. He is not a mistake. He is special, beautiful and a light wherever he goes. He can have a list of letters attached to his name on his business card of life (Mason Martens IS, LGS, A), but he is still Mason. One unique kid! His sisters can attest to that! By the way, Mason couldn't have any two better sisters! Thank you, Asia and Sydney, for the way you treat Mason and love him. This added diagnosis will affect our whole family.

During those first months and years the book of James in the Bible was my biggest encouragement. It is no accident that this is now the focus of the current sermon series at church. The NL translation was my favorite:

Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

We now have a new round of opportunity for great joy, testing, endurance and growth! You have my permission to email these verses to me when I'm not seeing the joy or the opportunities! But be assured, I know what God has done in the past, and I know He is faithful and I will be telling you more stories about him! Stay tuned!

Thanks for hanging on to the end!

G'night. Hope I can sleep! The boy has been sleeping a little better! I'll blog about that some other time....

Old Patterns Resurfacing

2009-05-11T01:39:00.000-07:00

I've been noticing a few patterns, from the first few seizure years, resurfacing.

~ seizures at meal times ~ I haven't figured out why, but for some reason meals used to trigger a cluster of seizures. We've been seeing that happen again over the last few months.

~ 1 am seizures ~ I used to stay up until Mason had his first cluster of 'night seizures'. Back then, nearly every time I would decide to go to bed at a decent time, he would seizure shortly after I fell asleep. Then I couldn't get back to sleep, so I would just wait for the first round before going back to bed. He would also be awake (and alert and happy) for quite a while before falling back asleep. So this is starting to occur again. (so I may as well be blogging!) He's awake right now reading a book. Well, actually, pressing the noisy buttons on his book. Go back to sleep, boy!!

A pattern that has NOT resurface, is the lack of learning. He's still moving forward! Nothing I can explain, other than the grace of God. :) Today he peeled 4 hard-boiled eggs. And he did a good job. Unusual, but something new!

We truly are thankful for each day that Mason is doing well. Even though what 'well' looks like is constantly changing! I'm reminded of the old hymn, It is Well with my Soul:

When peace, like a river, attendeth my way,

when sorrows like sea billows roll;

whatever my lot, thou hast taught me to say,

It is well, it is well with my soul.

Our 'lot' keeps changing, but we can depend on Jesus, who is our Anchor, because he is Truth.

Well, Mason has fallen back asleep now. G'night!

Naked Cats

2009-05-04T07:28:00.000-07:00

While in the car this morning, Mason and I were talking about our cat sitting on his window sill last night. Conversations with him are quite choppy. "cat", " 'dow", "loud", "meow". Suddenly he's giggling. (I love that sound.) Then he's saying, " 'aaked". He had just realized that the cat is naked! Funniest thing in the world at the moment! He could hardly wait to come home and tell Daddy! And I could hardly wait to blog it!

2009-05-04T00:07:00.001-07:00

It's been a while since I posted. We've been a little busy!!! So I'll write up a few things that I can remember, but I'll start with a medical update.

Overall, since Mason had brain surgery in Sept, 2005, his seizures have been minimal, allowing him to start to learn again. They have had a very gradual increase and the years have gone on, but nothing of concern. Over the last year they have been increasing a little more rapidly, but I think I've been in denial about it because he has continued to learn and grow developmentally. Over the last months they've fluctuated quite a bit, often because of his new anxiety issues. Over the last few weeks they've increased sharply. Especially at night. He actually screams with each one. They really freak him out. They are sharper and much stronger than they have been. He is also fully aware while he's having them. Before surgery, he would lose all awareness and a portion of his memory before, during and after a seizure. So this is why they are scaring him. He's fully feeling and remembering them. He's up once or twice each night, anywhere from a few seizures up to 10 or 20, sometimes lasting 30 - 45 minutes. We started going up on his medication a couple of days ago. The screaming has stopped, but the seizures haven't. I'll probably increase it again in a week. Other than that we don't have options. He's been on everything. The med they may want to try next has bad behavioural side effects, so I don't think I want to go there.

In spite of the increase in his seizures, Mason is still progressing! He is stringing words together on a regular basis! Last week we, as a family, were at Dairy Queen, enjoying our ice-cream. The girls were bickering a bit when suddenly Mason looks at Asia and says in a stern voice, "Asia, be nice!". We all burst out laughing in surprise. He comprehended what was going on, AND he articulated a full sentence!

Purple Day

2009-03-26T23:24:00.001-07:00

The Martens Family on Purple Day

Isn't that a contagious grin on his face? Mason loves having his picture taken.

We all wore purple! (Daryl's shirt looks black, but actually is a dark purple). Although Mason is clueless about Epilepsy, he does know when he's having a seizure and can say it... sort of. So, even he has a sense of awareness about Epilepsy.

He had a rough night Tuesday night. Throwing up. He gives no warning, it just happens. Messy. He stayed home from school on Wednesday and lay on the couch all day. Because I needed to watch him closely, so did I. he was also very clingy and cuddly. The stress of being sick added a bunch of seizures to his day as well. The risk with him being sick is a fever. That kick-starts non-convulsive status. That just means he starts seizing and it doesn't stop. Thankfully Advil liquid (not the pill) works. Pray that it does keep working! Otherwise it means a trip to the hospital in an ambulance, and Mason doesn't really care for those.

He perked up Wednesday at supper time. Ate like a horse, making up for the rest of the day! Thursday back to regular and off to school. :) Happy mommy!

Travis

2009-03-23T21:53:00.000-07:00

Here's an update on Travis in Michigan from his mom:

Travis got out on Friday night. Unbelievable he had minimal seizure activity although on Thursday evening had one of his major seizures - looks like a drop seizure on the video and eeg. Unfortunately they appear bifocal which you probably know means that there is no possibility of a resection [this is the surgery where they remove a portion of the brain]. We talked a little about the corpus callasotomy, but we aren't there yet. Travis is definitely in the throws of puberty which they acknowledge is making the frequency worse. He has grown too he's just about 5 foot and weights about 109 lbs.

The plus of being in the hospital is you have more Docs checking him out and brainstorming. The Doc in charge of the floor last week, likes to tweak VNS pacemakers. He got a little creative with the cycle times, pulse width and amp strength. Based on those new settings, when Travis had his big seizure the swiping of the magnet stopped the seizure within seconds which is a far cry from the minute or two (which you know feels like an eternity) we were used to.

So I have to set up an appointment with his pediatric neurologist - who was kept informed but wasn't able to see Travis at the hospital he was in because he was in charge of the monitoring floor at one of the new hospitals that just opened up.

I'm feeling a little better about Travis' seizures, they adjusted med doses to his new weight so between that and the VNS settings perhaps we can get him seizure free for a little while.

I feel bad because people who don't understand this process seem disappointed that there was no clear cut solution and as you know there is no easy way to explain it except that its just so complex when you are dealing with the brain.

Thanks for all your encouragement and the request for prayer from all of those who know you.

Allergies and Seizures

2009-03-23T02:26:00.000-07:00

Allergies (Hay Fever) and Seizures don't mix. It's 2:30 am and I've just come from Mason's room - he's still awake. His congestion woke him up triggering an episode of seizures. Waking is a common trigger in many people and Mason has seizures every time he wakes up, whether in the morning, middle of the night or dozing in the car. Allergies also have the potential to trigger more seizures as well as increase the intensity. In Mason they do both.

Mason did not have allergies until nearly two years ago. The trickiest thing about it was that he could not have allergy or cold medications because they interact with his seizure medications by changing the dose in his system. (He suffers cold turkey through all his colds. Thankfully he doesn't get sick very often) All the sneezing and itchy watery eyes was stressing his body so much that his seizures shot up. We have a great pharmacist that gives us a lot of great advice. (She used to recognize my voice on the phone before I told her who I was! So many phone calls...) She did a bunch of research for me and gave a recommendation for an allergy med that ended up having little effect on the seizure meds. :]

So he's back on that as of today. I'd noticed his seizures increase in the last couple of days but the sneezing really kicked in yesterday and today. The seizures that he just had were quite strong and he had probably around 20 or so. I don't count anymore. (I counted and marked down every single seizure for the first five years.)

Well, he's been quiet for a few minutes, now. Probably fell back asleep. It will take a few days for the allergy medication to really work. Restricted outside play! : ( Which is too bad now that we finally have some warm weather!

He does think that sneezing is terribly funny and laughs like crazy every time he, or anyone, sneezes!

G'night....

Moments Ago ....

2009-03-19T16:26:00.000-07:00

With eyebrows raised and mouth opening and closing ever so slightly in a rhythmic fashion, Mason sits at the table surrounded by paper, stamps and scissors.

Something has just occurred for the first time in his life.

He cut a strip of paper. Woo Hoo!!! Isn't that exciting? Ok, you may think I'm strange for writing this, but the boy has always cut randomly on paper. Cutting a fairly straight strip indicates improvement in his fine motor skills and the facial contortions show his concentration.

Anyway, thanks for reading my random little stories!

ps Vikki Hopes did an amazing job on writing the story on Mason and us in the local newspaper. abbynews.com (click on the lifestyles tab)

Travis

2009-03-17T12:13:00.000-07:00

A little while back I let you know about my friend in Michigan whose son also has Epilepsy. She sent this today:

fyi for those who don't understand all our lingo:

- intensive monitoring: that's what Travis is undergoing right now. He must stay on camera so they can see the seizures as well. Have you ever tried to keep a kid in a bed for a few days straight? While he's attached to a wack-load of wires?! They also have to be sleep deprived for this, as that often triggers more seizures. Mason has had quite a few of these sessions, and they are not pleasant, to say the least. They stay hooked up until they have received enough data. anywhere from a day or two to a week or more.

- leads: wires that are attached to a computer that records electrical brain activity. The leads are glued on to the scalp, then they put this mesh toque on to keep it all in place. It's very uncomfortable and the kids tend to try to pull it off. Glueing the leads on can take an hour or more, depending on how many there are, what kind of glue they use etc.

-pray for seizures: This is the one time that it is GOOD to pray for more seizures. And some big ones, too! The more info the dr's get, the better.

Yesterday was the first day for Travis at the hospital, prayer is already paying off as the applying of the 28 leads to Travis' head went better than expected he fought it a little, but the EEG techs were so good and worked so fast that I think they did it in record time - Randy and I were able to keep him busy doing his puzzles and such that there wasn't nearly as much resistance as we expected. We of course had to keep him entertained frequently and we can't leave him alone for a second as he will have the netting cap covering the leads and wires off in the matter of a nanosecond - I'm sure you know what that's like LOL!! So now we are hoping for some seizure activity events for them to check out without having to take meds away to do so, they are also interested in the general state of his EEG outside of the seizure activity. Thanks again for the good thoughts and prayers they are appreciated and needed. I'll keep you posted. Suzanne

REMEMBER TO WEAR PURPLE FOR EPILEPSY AWARENESS!!! MARCH 26

Spring Break

2009-03-17T01:18:00.000-07:00

We are now over halfway through our two week Spring Break. Not that it's spring here! We keep getting snow! Mason has been doing quite well so far, for being out of routine. Although, he is having trouble with his bedtime routine and not cooperating. I need to get into using the picture symbols like I'm supposed to. I started to, but I'm not good at that stuff. I have a wonderful friend who will be helping me get that better organized. (check out some recent archives if you want to know what I think of structure!!)

I am using a lot of respite, so Mason is getting lots of fun sleepovers!:) When he's at home, he's been having a lot of fun with Sydney, doing crafts, playing computer games, baking cookies, and playing air hockey, while Asia's been helping me with home improvement projects. (now, that is something I do well and enjoy a lot. Just give me some power tools.....)

Mason even slept through the night twice in a row last week!

I also want to let you know that Mason will be featured in the Abbotsford and Mission newspapers on Thursday March 19 to bring awareness to Epilepsy! You will also be able to see it online on Wednesday at www.abbynews.com. Scary and exciting all at once! :) :0

March is Epilepsy Awareness Month!

2009-03-03T22:18:00.000-08:00

March is Epilepsy Awareness Month.

Here are some Quick Facts (from purpleday.org)

Epilepsy affects approximately 1 in 100 people.

At least 1 in every 10 people will have one seizure in their lifetime.

There are approximately 300,000 Canadians living with epilepsy.

There are approximately 3 million Americans living with epilepsy.

There are approximately 50 million people around the world living with epilepsy.

Epilepsy is NOT contagious. Epilepsy is NOT a disease. Epilepsy is NOT a psychological disorder.

Find many more interesting facts about Epilepsy at

bluesticker.com/mason

Random Stuff About Mason

2009-02-22T00:43:00.000-08:00

Overall, Mason is doing quite well right now. Here are the nitty gritty details:

Potty Training

Ughhhh. Will it ever happen? He tells me "poop" after the fact. I've been loaned a little device that sounds an alarm at the first sign of moisture. (I'll spare the rest of the details) The thing I'm waiting for is my memory. I keep forgetting to use it.

Mason will be turning ten at the end of March. I figure that we've changed about eighteen thousand diapers in the last ten years. Many rather disturbing ones.

Nights

Not too bad. Mason is still waking every night, but he settles quicker most of the time. I have also been not turning on the baby monitor. So I don't get up until he's banging the walls and yelling "Mommy!!!". I go to him right away if he's having a bad dream and screaming from that. I'm not a totally non-responsive mom!

Mason has been falling asleep within five minutes of going to bed. It would take him an hour or two to fall asleep over the previous months. He sleeps through the night 2 - 4 times per month. Last night was one of them!

Then there are sleep positions. He falls out of bed every once in a while for moving around so much in his sleep. Last night I checked him before I went to bed. I so wished my camera battery had been charged! He was sitting cross-legged with his head on the bed in front of him - asleep! Another night Daryl got up to Mason's crying. He found him partially fallen out of bed with both hands on the floor, rest of his body in the bed, stuck.

Behaviour, Anxiety, and Seizures

Huge improvements! :) The doctors said I could play around with the Risperidone in how much to give Mason and when. So in the end, it works best for him in the morning. I can see when it takes effect. Mason often wakes up rather aggressively. He kinda explodes out of his room some mornings. After about 45 minutes I see the change. With each change I made in the

medication, I saw his seizures increase quite a lot. I also know that it takes about a week or two for the side effects to diminish or go away completely. So I decided to wait it out. Sure enough, the seizures reduced again. In fact, we hardly see any now (2 - 4 per day?). And what we do see is so extremely mild. My theory is that the Risperidone has reduced his anxiety which has, in turn, reduced the seizures. Anxiety and excitement are well known triggers for increasing seizures in someone with Epilepsy.

Development

It continues to amaze us that Mason is still learning and progressing at a rapid pace! Speech is the most evident right now. Most of his words are still partial and we don't always know what he's saying. Sometimes, when we don't get it, he tries a different word that has a similar meaning or explains the first one he was trying to say!

He is stringing words together to make partial sentences. He knows he's doing it, and he is trying so hard. There are days that he is an endless chatterbox. When my ears and brain start to hurt from it, I remind myself "this is a very good thing".

All the speech also reveals to us what's inside his head. He has a sharp memory! We can't tell him something and hope he'll forget. He also understands nearly everything we say.

Burp! Fart! Two of his favorite words. Most uncomfortable when he shouts them out in public! But put him in the same room with other boys that find that funny!?!!! Boys are SOOO different than girls!

Interests

Mason has to do EVERYTHING we do. If the girls are baking, Mason's right in there. So we have devised an alternative for him! We give him a bowl of flour, add some pepper or cinnamon, something that contrasts the white of the flour, give him a spoon and he is a happy boy stirring.

Mason loves to paint. "taint" in his language.

Coloring is also a favorite. he even tries drawing certain things like hearts and circles and grass. :) A little while back I watched him draw and name the things he was drawing. I had never seen him do that before!

Hair. He loves getting his hair done up with gel. Loves getting his hair cut and highlighted. You should see him look at himself in the mirror!

Playing with cars, Webkinz on the computer, reading - well having us read to him , bubbles and baths are also lots of fun. :) Occasionally, he plays on his own for a while.

Medical Stuff and Doctors

So we had a few appointments with the psychiatrist. They went very well. We got a partial evaluation and are waiting for an appointment for the big evaluation at Sunny Hill. So far they have seen indicators of anxiety, autism and ADHD.

Blood work has not yet been taken. I have a sort of appointment for someone to come to our house this Tuesday, Feb 24 at 8 am. So if any of you want to use your powerful muscles to help me out that morning, give me a call!

I've gone blank on some of the funny things he does. There are plenty of stories with this boy!

Well, I should go. He has plunked himself down in my computer chair, waiting impatiently to play Webkinz - lots of noise in my ears here..... Did I mention that his volume control is broken?

Prayer Request for Travis

2009-02-21T00:05:00.001-08:00

Occasionally I put up a prayer request for someone I know. I have one today for my dear friend, Suzanne, in Michigan. We met online a number of years ago because of our boys. (there are always good things that happen in the midst of even extreme difficulties!) She has a son with Epilepsy who is a few years older than Mason. She has been an amazing encouragement to me over the years. I always know that she knows what I'm going through when she says thinks like, " Mason reminds me so much of Travis at that age!" That also means that she herself has felt the way I have on many, many occasions. And I understand her current fear. Her faith in God has been a huge inspiration to me. Yes, Suzanne is an amazing mom, friend, and sister in Christ!

Here lies the need for prayer: Travis, who is going through puberty, has been experiencing some frightening break-through seizures. He's been doing better over the last few years, but recently the seizures have been getting out of control again. They, too, have experimented with many medications and treatments. I have read that puberty can cause significant changes to a seizure disorder, and as Suzanne says, there's not much that can be done about puberty. Mason's not there yet, so I haven't looked into it that much.

Coming up:

- adjusting medications for Travis

- Travis will be going into the hospital for a few days for intensive EEG monitoring. Just like Mason, Travis cannot understand what's going on when they wrap him up and physically subdue him while they glue 25 - 30 'leads' onto his head, then keep him hooked up to a computer for those days, as well as constantly videoing him. ( I"ll inform you when they have a date)

- Other stuff. Some forms of Epilepsy are very unpredictable, especially the more severe kinds. So there may be other medical tests coming up, as well as unpredictable changes in Travis.

- Pray for the doctors. That God will give them amazing wisdom, knowledge and discernment in understanding precisely what is going on, and abilities to treat Travis effectively without harmful side effects.

- Suzanne and husband and other son. Such changes in seizures, along with the up-coming tests, are very difficult on a mom and the rest of the family.

from Suzanne: "... nothing stronger than the power of prayer on our behalf. Mostly I'm praying for the seizures to just get under control - I've been praying much bolder lately and asking for a miracle - what a story to tell. Thanks for thinking of me and Travis!!"

We are all placed where we are for a purpose beyond ourselves and our own happiness and fulfillment. We are here to come alongside others, just as God has been there for us. (my paraphrase of 2 Corinthians 1)

Please join me in coming alongside Suzanne and her family.

Thank you, friends.

The Birth of IMAGINE Ministries

2009-02-09T22:07:00.000-08:00

I have some very, very, exciting news!

We are only a few weeks away from launching Imagine Ministries!

This is a program designed for FAMILIES of children with special needs. When you have a child with any type of disability, it is very difficult to attend many community functions. Church is one of those difficult places to attend because there is seldom an appropriate place for the kids to be. We seldom attend church all together as a family. Mason either goes to Grandpa and Grandma's house, or Daryl and I take turns going to church with the girls. When we do take Mason along, we usually end up walking the halls, bugging the person in the library, pulling the public phone off the wall (he actually did that a few years ago) or Daryl often ends up taking Mason to Starbucks.

We have had help at times, which was great! But there still was not an appropriate room for Mason. He doesn't learn anything in the grade 4 classroom because his comprehension level is that of a 2 or 3 year old.

Here's the quickie version:
~ It will be available for the Saturday night service at Northview Community Church in Abbotsford (northview.org)
~ Each child will have a one-on-one caregiver
~ Caregivers will be interviewed and trained
~ Available to EVERYONE - the whole community! :) not just church members
~ A classroom is being renovated for sensory reasons, and will have a trampoline with handle bars, great toys, a private change table area, and more!
~ There will be free play time, KidsTown (Sunday school) worship/singing time, structured classroom time with stories and songs, colouring and crafts.
~ We will be implementing a buddy system with typical kids

Contact myself or Robyn at imagine@northview.org if you have a child with special needs or want information about volunteering.

So how did this begin?

Fall of 2007 was the first time I heard that Willingdon Church in Burnaby had a program for kids with special needs called Imagine. That was when I started bugging our new Children's pastor, Robyn about getting it to Northview. Then I heard she had been the pastor at Willingdon when it started there! She started waiting for someone to take it on. So half a year later, spring of 2008, when nothing had happened I met with Robyn to let her know I would help get things started, while we more actively looked for someone to direct it. I told her, "I have no time for this, and no passion for it." I knew it was needed and would do what I had to in order to get it going. Little things here and there started to happen, but no leader.

A week and a half ago my friend Thaleia shared her story of obeying God when she really didn't want to go where he was sending her. The very day she arrived, he gave her an unexplainable joy! I asked her how this whole experience had changed her life. I can't remember her exact quote, actually she doesn't either... but it was something to this effect: She learned that she needs to obey God no matter what her feelings were. She obeyed, kicking and screaming, but she obeyed. Feeling good about what God wants us to do is not a prerequisite. Feeling good once we do it is also not a guarantee.

Prior to this, there were some Bible verses that kept popping up in different places.
Isaiah 58:10-11 if you pour yourself out for the hungry and satisfy the desire of the afflicted, then shall your light rise in the darkness and your gloom be as the noonday. And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

Satisfy the desires of the afflicted ... satisfy the desires of the afflicted. Even now as I write this my emotions well up. Our community, Abbotsford, has so very many families, with a child with disabilities, that have desires. Desires to be accepted in a public setting. To not feel out of place. To not be on edge, wondering if the person looking at them is going to say something hurtful because of the behavior of their child or because of the way their child looks. Wondering of they will have the energy to go out.

afflicted
adjective
1.	grievously affected especially by disease
2.	mentally or physically unfit

Does that describe kids with special needs or what! ( I would differ with the unfit part, but that word is not used according to God's view of these kids,although that's the way society often sees them)

Anyway... these were the two nudges, Thaleia's experience (interesting note here: she went on her mission's trip last fall and did not have the opportunity to share her experience in our pastorate until recently...hmmmm interesting timing!), and the Word of God. So .... the next day I said yes to God and popped in at Robyn's office to tell her the news that I would fully take on Imagine Ministries, "add me as the contact person".

Was I crazy? Yup. I was exhausted from waking at night all the time with Mason, changes in his behaviour, new doctors to see (it's amazing how energy-draining a new investigation and seeing new doctors is!) etc, etc (just read my posts over these past months!). My brain was totally fried, I would go into the garage, I don't know how many times a day, and just stand there because I had no clue why I was there. I would do that when driving as well. No clue where I was going. So I would just keep heading in that direction until it came back to me. My kids are used to me making lots of U-turns anyway, so they didn't even notice! I had begun a Theology course, but gave it up because my brain could not process anything. (that was brutally difficult for me to do. I love studying) I was taking huge naps every day, laying around on the couch ... That's what I do when I'm depleted...

So this is where faith steps in. Believing in and following God even when and ESPECIALLY when it doesn't feel comfortable! Taking on something new when I couldn't even handle what I already had! People very often quote that God will not give us more than we can handle. Yet, he does give us more than we can handle! I think he gives us beyond what we can handle, so that we will ask him for help. That is when he steps in and does amazing things! If we are handling it, we don't need him. In 2 Peter the author is talking about how God has rescued different people, and even angels. Then he says this: "if this is so, then the Lord knows how to rescue godly men from trials".

So, an amazing thing happened the next day. I woke up refreshed and renewed. And it was not because I was excited about the Imagine Ministries. When I talked to Robyn, I was still wondering how on earth I was going to do it, and I still did not feel like doing it! On Thursday my gloomy feelings instantly turned to light, where I felt scorched, God was guiding me, and I felt strong again after feeling so weak for so long. The scripture was coming true in a way I have never experienced before! Ideas started pouring in, everything started to fall into place in amazing ways! I am totally awestruck by what God is doing!

This past weekend we had our first promotion looking for volunteers for Imagine with a video of different parents and their kids with special needs. Robyn and I were available after each service. We had 25 volunteers sign up!!! Incredible! If you were one, thank you! If you're going to be one, thank you! If you're praying for us, thank you! :) This means we can accept more children!

I'll be letting you know about some other WONDERFUL things that are happening, but I can't tell you yet! It's a SURPRISE!

Our God is an awesome God!!!!!!!!!!!!

Company for the ride in

2009-02-01T22:00:00.000-08:00

Hi Everyone. Two items here:

1. I have an appointment with Mason's psychiatrist at Children's Hospital on Tuesday morning at 10 am. He does not have to come along. That means I am going in alone and do not get to use the HOV lane. So, is there anyone out there that would like to spend the day with me? (then I can use the HOV Lane and shave off a lot of driving time) Here are the details:
Leave at 8 am
10 am appointment (lasts about an hour)
IKEA!!!!!
home by 2 or 2:30 at the latest (gotta pick kids up from school - but always have a back-up plan)

2. The blood test has not yet happened. We went in, but SOMEONE forgot to read the fine print. (Mason can't read, so obviously it must have been someone in charge of him) He is supposed to fast for 10 hours first. So that means an early morning blood test (after not eating all night). The complication is that the wait at the clinic is always LONG in the morning, because so many people have to fast for their blood work, and they don't take appointments. I cannot see Mason hanging out in a medical clinic for an hour or more. So I contacted our Health Unit nurse to see if she could do it at home. There is a program where a nurse will come to our house, I first have to get a requisition from our doctor. So when I have that in place, I will be asking for help again.

Volunteer

2009-01-25T16:45:00.000-08:00

I need to take Mason for blood-work this week. It always requires 4 people to do it. Usually there are 2 technicians, me, then I need one more. Daryl's no good. He gets all wimpy and tries to talk me out of doing it. I'll double-check with the clinic when the best time to go is, but I think it's around noon when it's least busy.

So let me know if you'd like to assist me. He fights us off, so you have to be prepared for lots of screaming and kicking etc.

Thanks....

Answers.... sort of.....

2009-01-20T23:20:00.000-08:00

I saw Mason's psychiatrists today. (there are two) They see many things affecting Mason and we will begin implementing some stuff. I will be going back to see them in two weeks. These are some first steps:

- sleep - intensify Mason's bedtime routine with pic symbols. (pictures showing the sequence of the details of the bedtime routine) I don't know how that will help for 5 am.

- anxiety - I need to read and gather more information to understand it.

- emotional development - Mason had NO emotional development for the 5 years of intense seizures before his brain surgery. So now, with three years of reduced seizures, that part of his brain has had a chance to develop. ( the stuff you take for granted when your children are typical!)

- medication - apparently there is some link with omega 3 fatty acids helping with anxiety. I'm supposed to give him 3 grams per day. Risperidone - There is room to play with the dose, but comes with weight gain as a side effect. They are hoping to deal with his problems in such a way that we could perhaps take him off the Risperidone in 6 months or so.

- Autism?? - They are going to refer Mason to Sunny Hill Hospital in Vancouver to asses him for Autism. In the past, the seizures have been so overpowering that they masked anything else he could have. I kinda don't think they'll come back with an Autism diagnosis, but it would be nice to have the label! The label gets us more funding to help him.

- Behavioural Intervention - I have to keep records of his behaviours over the next couple of weeks. So when he has a 'tantrum' or explosion, is defiant or oppositional, I need to write down what happened before, what the behaviour looks like and what happens after (consequence). We will also be looking into Behavioural intervention.

The quick bite is that there will be a number of appointments coming up and significant changes in our routine at home. Yes I have routine, it may not look like a routine, or actually be routine, but it is! What will actually have to be implemented is more STRUCTURE!! UGH!!! Many of you may not understand this, but this will be exhausting for me. Bottom line is: Mason likes structure, I don't. Mason does well with structure, I don't. Maybe it's ME that needs a behavioural interventionist. I'm sure my dear husband would agree. Those of you who know me well, know that this will definitely stretch me. When Mason was on the Ketogenic Diet I had to be extremely structured for those 6 months. It took all my energy. So I'm not looking forward to that much structure again. At least we're starting with small bites like bedtime.

I needed to vent. I'll probably do it some more.......

Today's appointment has confirmed my suspicion that we are entering another "New Normal". This will be round 3. The first was when the seizures started, 8 1/2 years ago. It took me a year and a half to find that new" normal". The second time was after brain surgery. Mason changed drastically and I had to find my feet again, as his mom and in family dynamics, and what that all meant for our family. That time it only took 9 months to a year or so. Hopefully this next phase of life, involving psychiatric issues, will not take too long to adapt to.

ttfn!
ps did I tell you I don't much care for too much structure? There are a lot of things I take in stride. Structure = kicking and screaming.

Life

2009-01-13T11:35:00.000-08:00

One of my favorite albums is "Satisfy" by Kathryn Scott, which I was just listening to. This song is my prayer so often, especially now. I am reminded again that there is nothing and no one that will meet my needs, not even sleep, like Jesus will. He restores my hope and life. He does satisfy.

Breathe on Me Now

When my soul has cried its tears
And my heart begins to faint
Will You draw near
Will You meet with me

When my days are filled with longing
And my spirit groans and waits
Will You draw near
Will You meet with me

I'm calling and waiting
Your presence Lord is life to me

Breathe on me now as I bow down
I'm desperate Lord for more of You
Come satisfy until I
Am even more in need of You

When my dreams have been forgotten
And my hope begins to fade
Will You draw near
Will You meet with me

When my days are filled with searching
And my strength has given way
Will You draw near
Will You meet with me

I'm calling and waiting
Your presence Lord is life to me

Breathe on me now as I bow down
I'm desperate Lord for more of You
Come satisfy until I
Am even more in need of You

Another Sleep!!

2009-01-12T23:08:00.000-08:00

Yes!! Mason slept through the night last night!!! AND woke up dry!!! Two nights in a week! I have been praying (actually begging) that Jesus would help Mason to sleep through the night. So I figure if I'm asking for that, may as well ask for a dry bed! :) He does not always say yes, but often enough (twice!) to give me a break.

Also, I gave him the Risperidol ( the anti-psychotic) only in the morning today. He's been VERY calm and co-operative today. Wow, what a change. But then his seizures are way up, which also have a sedating effect. So I don't know what is calming him, but it was the first relaxing evening with Mason at home in a really long time.

It's just after 11 pm and after laying in bed, quietly, for a LONG time Mason has just fallen asleep. Was it because he, too, is not used to a good night's sleep?!?!

First Appointtment with the Psychiatrist

2009-01-11T22:47:00.000-08:00

We saw the psychiatrist at Children's Hospital last week Wednesday. It was an hour and a half of questions with a follow-up appointment shceduled on January 20.

We have no real answers yet, but I know it will be a lot of trial and error.

So far: When I was asked what I wanted out of this process, I said that I just want to understand what is going on, then go from there.

When I asked her (Dr. Chapman) what she thought so far, she said there definitely was an anxiety component, but with Mason's seizures, other meds, behaviours, etc it is very complex. They will be evaluating everything and hopefully have some answers next time. Most likely Mason will be officially diagnosed with anxiety disorder.

In the mean time, she said I could try different times and doses of the Risperidal. So I've given some during the day instead of bedtime. We have seen less anxiety during the day. We have also seen a big increase in seizures. He had an increase in night seizures when we started this medication, but they seemed to settle a bit after a while. So I'm just going to wait it out and hope the seizures lessen.

As Mason continues to develop cognitively and in speech, he is also much more aware of his seizures. They have been upsetting and frightening him in the last couple of months. I feel so sad for him, especially when he has several seizures within a short period.

So how is this affecting the family? It's not been easy. In fact, it's been more difficult than it has been in several years. For myself, I have become quite accustomed to figuring out what is going on in regards to seizures and seizure medications. I understand that stuff. Anxiety is a whole new ball game. It feels like I've stepped off the bottom step without a floor to step on to. Just waiting for my foot to hit something solid. Dealing with the extreme behaviours, aggression, screaming, and stubborn defiance takes a lot more of my time and energy, which will, of course, take that away from the girls and Daryl making balance in our family difficult to acheive. Thankfully the girls are at an age of being able to reason, so we can talk things through. And Asia made tacos for supper tonight, which was a treat!! Beats what I would have made: crackers and cheese again!!

Good things:
- Mason is going to bed easier again
- For the last two nights he has settled quickly when he wakes at night
- Mason even slept through the night once and woke up without having soaked the bed for the first time in nearly a year!
- Some easier daytime behaviours
- Did I say Asia made supper?!?!

Difficult things:
- Sleep deprivation for me which does a number on my memory and energy, as well as my health.
- Mason waking every night, sometimes multiple times, (except that one night!)
- Mason soaks the bed every night. So I have to change him and his bedding in the middle of the night. I prefer sleep, thank you very much!
- He's not progressing in potty training, although his teacher at school is determined to do it. She's amazing!!!
- I have more frequent days that I "crash". Overwhelmed by it all.

In spite of all this, we are thrilled over and over by what Mason is saying and understanding. He's been putting together a string of words into sentences many times per day. Not all the words are understandable, but often we know what he is saying! Today, as Daryl was getting ready for bed, Mason said, "Papa" as he was removing his shirt. Daryl commented, " did you wear your shirt to Grandpa's?". Mason said, "No, gift". He was wearing the shirt he got for Christmas from Grandpa and Grandma! His memory is sharp. He knows what's coming up next in every episode of Mickey Mouse Clubhouse on TV. They do a lot of counting on that show, yet, that concept has not yet registered with Mason. Along with the toilet training.

Mason desperately wanted to open gifts before Christmas. He would sit down with a gift on his lap, finger positioned in a little gap, face looking up at us eagerly. Heartbreak when we said no. So one day I asked him if his name was on the gift. I pointed at the name and he said the correct name. Although he cannot read (he can't even say his own name), he does recognize his sisters' names and mommy and daddy. He seemed to understand these were not his gifts. The next gift we looked at said to Shirley from Asia (she's 14 and gives us some occasional attitude... LOL). Mason looked at my name and said "Mommy". That was a shock. We are convinced over and over that Mason understands much more than we realize. It appears that there are areas of his brain that are functioning well, and others minimally. I wish the toilet training part of his brain would work!!! Please!!!!! At least all his diapers, bed pads, wipes etc are provided. :)

Well, off I go. Thanks for listening. And I know that God does, too. I've been asking and begging for long dry nights, and He's given me one, plus others that are more manageable. Will you continue to join me in this? Thanks!!

Psychiatrist Appointment and more

2008-12-18T12:58:00.000-08:00

Mason has an appointment to see a psychiatrist at Children's for January 7. So that's good, nice and quick. Maybe we can get some more insight into what's going on with the boy. The Risperidone is helping, so that's good, but hopefully a short term fix as we deal with the long term behaviours. Behavioural issues will be something we will always have to deal with, as Mason does not have the capability to understand and reason as we do. With him getting bigger, they will be harder to manage. He is almost 10 and is taller and heavier than average. He is also very solid and strong.

Mason has slept straight through the night all the way until 7:30 am two days in a row!!!!! I actually woke just before my alarm today!! I don't think Mason has had two full nights in a row since the spring, therefore... I haven't either! Except when he's been away for an overnight respite.

Mason is loving the snow. Anyone want to hire him? He does "random " snow shoveling! Shovels the snow wherever he feels like it. This is at school yesterday.

He also LOVES "art"! btw, doesn't a Santa scarf go great with a Hawaiian shirt?

Day 10

2008-12-13T17:19:00.000-08:00

It's been ten days, now, since we started the new med. It's been very up and down. Over all, the daytime behaviours have settled. Our idea of "settled" is still stressful, but he cooperates more often :). Some days are better than others. We increased the dose on day 8.

On day 7, Mason had an "episode". He had been doing well all day and evening being the sweetest little boy. Suddenly, in a matter of a split second, his alter-ego appeared and he started screaming, freaking out, and thrashing the Christmas tree, stripping one side of it's ornaments. After a minute or two he calmed slightly and spent the next few minutes sobbing like crazy on the couch. It was heartbreaking to see him swing so wildly. I could not figure out a trigger, it was so random. I really don't know what to expect each day, or even each hour.

Mason has had a few good nights this week :) He even slept in until 9:30 today with waking only once at night for his usual seizures! Not that I slept in...I lay there waiting...

Mason had a blast this morning decorating a gingerbread house with his sisters. He even restrained himself from eating the candies until the decorating was finished!

Mason has been referred to a psychiatrist at Children's. We expect to see her soon in the new year.

Meds 101:
If you're not familiar with medications here's a little lesson!

- It usually takes 1 - 2 weeks for side effects to settle down.
- Some side effects go away
- Some side effects do not ever go away
- Some side effects linger, but are minimal

Honeymoon period: Medications are often effective for a period of time then become less effective - ranging from slight changes to not working at all. Sometimes they can even have the opposite effect that was intended. As a result, Mason has been on 12 - 15 different meds, up to 4 at one time. Thankfully Daryl has great prescription coverage at work! Most of the pills have been quite expensive.

Some medical conditions are resistant to any treatment. Lennox Gastaut Syndrome is such a condition. Most forms of Epilepsy respond positively to medication. There are a few types that do not and LGS is one of them.

Currently Mason is on one type of seizure medication. I don't think it is doing anything for him at all. In fact, as we went down on it, Mason had less seizures. This has happened with others as well. (all seizure meds have listed that they could actually increase seizures. If taken by someone without seizures, it could induce them)

With Epilepsy, everything is trial and error. We have always been told that we would try something and hopefully it would work. Even the most specialized specialists in neurology cannot predict what will happen in LGS.

Carrying on, one day at a time..... Shirley

Seizures

2008-12-08T09:03:00.000-08:00

Mason had some unusual seizures at night. They scared him. :( Probably from the new meds. It usually takes at least a week or two for any side effects to subside, so we'll wait it out.

There could be another reason for the increase in seizures. Christmas! All the excitement of the lights and Santa could be doing it. Many kids with seizures have more at this time of year. They have to avoid the malls, lights, Christmas programs, etc. It never used to bother Mason because he was in such a fog all the time that he wasn't even aware. We had to open his gifts for him. he didn't have a clue what was going on. In the last couple of years that has changed! Now he has to open everyone's gifts!!

testing the subscribe stuff

2008-12-07T21:25:00.001-08:00

testing the subscribe stuff

Try subscribing at the left. I don't know if it works yet.

It works!! :) Cool!

Day 4 on New Meds

2008-12-07T19:56:00.000-08:00

Today was the first day that Mason was home all day since starting Risperidone. He was pretty calm. He even watched a whole Rudolph movie in the morning!!! It's been at least half a year since he stayed in one spot that long. Lately he's done 20 minutes on a very good day, and those have been extremely rare.

It's still a little early to tell how well the medication is working. This could be the "honeymoon" period. We've had a lot of honeymoons over the years!! One time it was two whole weeks from a new med. He was seizure free for three weeks after brain surgery.

It was incredible to have a whole day without the screaming and the violence! :) :) :) We even decorated the Christmas tree today! Mason did something I have never seen him do before. He was able to hook the tiny wire hangers onto the plastic ornaments, and had the patience to do it, as well. He has very poor fine motor skills, so this is progress.

He had two of the stronger seizures this morning and had to lie down for about ten minutes after the second one. This is the first time a seizure has made him tired since he had surgery over three years ago. This new medication has the potential side effect of increased seizures. If it increases this much in the long run, that's just fine by me.

Day 2 on New Meds

2008-12-05T19:24:00.000-08:00

So far it's difficult to tell exactly what the new medication, Risperidone, is doing. I think it may be taking the edge off Mason's impulses. They are still happening, but he's also been at school and away for respite tonight. He is still unusually hyper with a short attention span and extreme stubbornness. But we have seen no negative side effects so far!!!! :) :)

I spoke with a friend who is a nurse working with psychiatric patients. She is very familiar with this drug and was able to answer a lot of questions I had. Thanks ML!!!

Surrender

2008-12-03T15:03:00.000-08:00

We have entered another difficult phase with Mason. He's been having an increase in difficult behaviours. Now remember, he is at a 2 - 3 year old age developmentally, but he is a big strong 9 year old boy. So that comes with some typical tantrums and boundary pushing. yet, with Mason, they accelerate to violent explosions instantly. That involves kicking, screaming, punching, biting and throwing furniture, including coffee tables, chairs and lamps. (The lamps actually still work! but we can't get the shades straight anymore.) He is also not sleeping most nights. It really escalated this past weekend and so I had a total meltdown on Monday. I talked to our social workers, a friend who has a child with a severe chronic condition as well, and our nurse at Children's hospital (she said it had been a long time since I cried on her). Mason seems to do much better when he is with other people though! That's something to be thankful for.

I can't say that we have figured out what's going on, but the nurse said they see this kind of thing happen a lot when the seizures come down. The seizures themselves act as a sedative, so now that Mason has less of them, he is more aware and alert, therefore wanting his own way a lot more. We see that in his increased comprehension and attempts at sentences. He is also on the lowest amount of medication he's been on.

So we are going to be trying out a new medication tonight. An anti-psychotic called Risperidone. It's a little bit scary. Although Mason has been on I don't know... fifteen different medications? This is a totally different category. He also has a tendency to paradoxical reactions to medications. One example is when we gave him Valium years ago to stop a seizure. I was told he would be very sleepy. He actually became so hyper that I couldn't even touch him for hours. The Risperidone is supposed to make him sleepy as well. It also has the potential to increase seizures, which I can easily live with right now. What it's supposed to do is settle him down and reduce his impulsiveness, as well as get him to sleep at night.

The other night he was awake a lot of the night. I slept in his bed with my arm across his chest and my leg across his legs to keep him down. I would doze off, and each time I woke, his eyes were open. I don't know if he was having seizures but most likely he was, as he does every night. I recalled how I used to hold Mason night after night in the rocking chair, seizure after seizure, singing "Jesus, All for Jesus" by Robin Mark. "All I am and have and ever hope to be". "All of my ambitions, hopes, and plans, I surrender these into Your hands". Many nights I couldn't even get past the first word of the song - "Jesus".

With that same song I now continue. "Jesus, all for Jesus". Once again we must surrender to Him our ambitions, hopes and plans. Jesus doesn't waste anything. :)

The Amazing Adventures of Mason

2008-12-03T13:15:00.000-08:00

We are noticing that Mason is very observant and attempts to do whatever we do, or whatever he wants to do. Daryl and I were out last night and left Asia, who is 14, in charge of him. She told us this interesting story:
She had gone to the bathroom and when she got back, Mason had pulled up a stool to the kitchen gate and climbed over. He then pushed another stool up to the stove to get at the cupboard above to get the candle lighter. He then went and sat down at the kitchen counter with a cupcake. He put a candle into it and lit it. All this in a matter of a couple of minutes! Those brain synapses are working well!! Time to figure out a decent locking system in the kitchen that doesn't look funny!

Doors, doors, doors. All the doors on our main floor have keyed locks. Plus our deadbolts are keyed on both sides. He learned how to pick a bathroom lock when he was 2 1/2, so that's why the extra precautions. So we have a few tacks high up on the walls, way out of the reach of a 9 year old boy, to hook the keys on. Mason has figured out that if he throws something at it the key will fall off and BINGO, he can go into any room he wants and get into trouble. So it's back to the drawing board to find a new way to have the keys easily accessible, but not to the boy.

Another thing we'll have to be on the look out for is Mason climbing over the gate at the base of the stairs. I'm thinking barbed wire. Anyone have a better idea??

Unique Sleeping Position

2008-11-14T23:10:00.000-08:00

This boy has some unique positions to sleep in!

20,000

2008-11-12T15:58:00.000-08:00

What comes to mind we see the number 20,000? Dollars, a small city, the cost of some kind of new car, ...leagues under the sea, the cost of a house ... a very long time ago. None-the-less, it's a big number.

This week, this number reminds me of God's Faithfulness. I did something I have only ever done once before, many years ago: I estimated the number of seizures Mason has had in the past eight years. You may have guessed it by now... Twenty thousand. Those are only the ones we see. According to his EEG's, there are plenty happening in his brain that we don't see. It overwhelmed me the other day, how amazingly God has been there all along. Yes it's been tough, excruciating at times, but we, as a family, have not only survived, but, we are balanced and enjoy life! (Ok, not everyone thinks I'm balanced)

NO

2008-11-09T18:30:00.000-08:00

What drives every parent to near insanity? : a child that does not stop saying "no". Well, right now Mason says "no" constantly. Only, he is not doing it out of defiance. He has developed an unusual side effect from his medication. Saying "no". It is a Tourette's Sydndrome type of tic, although Mason does not have TS.

So he says "no" every few seconds. The trouble is that most of the time I don't know if he is actually saying "no", or if it's the tic! A lot of confusion...

This also happened nearly two years ago when we went up on this medication. Only it was just a grunt. It took a couple of months to go away then. Hopefully this, too, is short term!

Doctors, Doctors, Doctors.

2008-11-05T22:14:00.000-08:00

Well, the dust is settling after a number of issues arose for Mason. Here are the results of the doctors' appointments Mason had:
~ Family Doctor: to get a referral to the pediatrician.
~ Pediatrician: Saw him for the chronic diarrhea Mason has. We went for a blood test, which had me holding Mason on my lap, plus four technicians. One held his kicking legs, one held his fighting arm, another poked the needle in his blood vein and the last one blew bubbles! Not so fun. But he did leave with a wave and a smile and a bunch of stickers! We have not heard back about the test results, so that means they were negative for: Crohn's Disease, Celiac Disease (runs in my family), and other stuff. Basically we have no idea why it's going on. He is sensitive to certain foods, so it may be that there is something new he is sensitive to, and we just don't know what yet.
~ Neurologist: Mason was on two medications. We decided to go completely off one of them. Keppra was the one that was causing the hallucinations and aggressive and violent behavior. he has been off that med for a week, and the adverse side effects are now gone. :) He has also joined a study of medications with adverse side effects. Keppra with psychosis is one of the medications on their list. They took his DNA and are looking for genetic markers, that would show a predisposition to the drug, in order to create a national data base; something that is lacking in Canada.

Currently, Mason's seizures have increased in frequency and intensity. Once per night, plus 3 - 5 during the day. Most are a matter of seconds in length, others last anywhere from 15 seconds up to a minute. Right now, it's not a bad trade off for the negative side effects that are now gone!! He is a very happy boy again, with the frequent anger and aggression gone. Just the regular tantrums now!!!

Some really great stuff: Mason has been putting together four word sentences quite intentionally! There are short pauses between each word. " 't doing?" has become "what...are...you...doing?" . You can see his wheels turning as he does this. Some days he is a super jibber jabber -- non-stop chatterbox. Asking lots of questions and telling us everything he sees. Much of these are things he has done in the past, but now he says words slightly clearer, although a lot of it is still difficult to understand if you don't know him.

The thing that amazes me is that here we are,, three years after surgery, and Mason is still learning! I truly, am thankful for each day that I can say this!

8 Years Later...

2008-10-12T00:10:00.000-07:00

Today, October 12, marks 8 years since Mason was first admitted into the hospital and diagnosed with Infantile Spasms (later progressing to Lennox Gastaut Syndrome). The first few years I cried on this day because it was a painful memory. Today I cry for a different reason. God has been so faithful. He has been there all along, and even though we still have our struggles, I know He will continue to not let any of it be wasted.

Here a quick update on the boy. The diarrhea stopped for a couple of days, but returned soon after we arrived at the retreat this weekend. He has an appointment with a pediatrician on Tuesday to look into it. There was nothing that triggered it this time, that I know of anyway. It did make the retreat more difficult...

The weekend retreat was for families of kids with special needs. I have never felt so comfortable, as a family, in a group setting as I did this weekend! Acceptance, compassion, caring as well as 'not caring' when your child's behavior becomes not-so-nice. Like throwing a spoon across the dining room, tossing over chairs, screaming, etc. And that was only some of the stuff Mason did! I could just stand there and let him have his tantrum and nobody gave me funny looks.

Asia and Sydney both connected with other girls near their ages, and have formed friends for life, I'm sure. This was the first time Asia has met someone in her age group that has a sibling with special needs. And they go to the same youth group!!! Finally she has someone to identify with!

I was nervous Friday night, but not so bad Saturday morning when I spoke. And not at all on Sunday. I think I did alright in speaking and engaging everyone in sharing on different topics with questions I posed. It's always hard to tell, but some did tell me that there were a few things that they now view differently. :) There were many, many nods of agreement as I spoke. We identified with each other.

The most incredible moment for me was at breakfast on Saturday morning when I was talking to another mom. She had been feeding her 10 year old disabled son, but paused as she and I conversed. Suddenly her daughter, also 10, took the fork from her mom's hand and started feeding her brother, just picking up where her mom left off. I burst into tears. I have never seen another family operate the same way ours does. It's hard to explain, but families that have someone with a disability just operate differently. This weekend was such a bonding event like I have never experienced.

I could go on and on, but I promised a 'quick update'.

THANK YOU for your prayers this weekend and thank you in advance for your prayers this week.

Tuesday: Pediatrician
Wednesday: Neurologist

Off to bed, retreats = sleep that is not as good as at home!!

Complications

2008-10-05T00:09:00.000-07:00

Hey there everyone.

I just sent an email off to Mason's neurologist at Children's. So please ask God to give her His wisdom, His knowledge, His understanding as to what is going on with Mason.

As you know, he started hallucinating this summer. We've been messing around with his medications to see if they are causing this side effect. In doing this, his seizures have lessened (they'd been going up) and he is actually sleeping better at night because his night seizures are shorter and he settles quicker to go back to sleep. We are so happy for that!! :)

Although they have lessened in intensity, the hallucinations are still happening once each week or so. I'm starting to wonder if it's something else. He is also on day 5 of diarrhea, without being sick. (I really don't like doing laundry!!) It started after having some plums and grapes when he was with someone else. He has always been sensitive to grapes, but recovers quick. I didn't even think to tell the person he was with to avoid grapes. He's had food sensitivities ever since he was little. I also wonder what 8 years of heavy medications has done to his system.

Something's going on, but I don't know what. Usually I can kinda figure it out, but not this time.

Coming up:
We have an appointment with the neurologist on October 15.

I'm speaking (3 times) at the Family Support Network Retreat (for families with a member with a disability) next weekend, Oct 10 - 12. (Oct 12 is the 8th anniversary of Mason's diagnosis and first hospitalization) The kids are coming along. They have caregivers for the kids with special needs, and fun activities for the siblings as well!

I'm also taking a course that requires a lot of time.

Can Lying Actually Be A Good Thing???

2008-09-17T00:05:00.000-07:00

Last week for the first time in his life, Mason lied to me. Blatant flat out LIE! So remember he is 9, but developmentally about 2 or 3.

Here's the story:

As you are aware, we are trying to potty train him. So he went to the bathroom to go pee, sat for a bit then got up. I asked him if he went pee, "No.", was his reply and sat down again. A minute or two later I heard him flush. So I asked him the same question, "Did you pee?". Turning his head, avoiding eye contact he replied, "Yes.". I asked him again, with the same reply. Hmmmm, rookie liars.... I don't allow him to flush unless he's added something to the clear toilet water. Flushing is his reward.

So I took him into his bedroom to get on a diaper. I readjusted my strategy. "Did you flush?". "Flush!", was his excited reply. There was a complete change in body language, so I continued with the same question from a few minutes ago. "Did you pee?". He sadly lowered his head and said, "No."

Caught him!!!! But I could hardly contain my laughter! And at the same time I was excited! Mason lied! Yes, I will have to figure out how to deal with a lying child with very limited comprehension. Yet at the same time, lying indicates progress in his development! Woo Hoo!! Lying requires imagination, so this incident clearly indicated that it's working!

Hopefully he doesn't do it again for a while. I'm not sure what to do with it now, he doesn't respond to the same type of discipline as typical kids. As with everything else with Mason, we'll figure it out as we go!

Back to School

2008-09-01T00:04:00.000-07:00

Hello again

Just to give you a QUICK update on the boy.

Tomorrow is back to school! I don't know if I'm ready for it yet. ( I can't believe I wrote that and mean it!) This summer has been great. Usually during the last two weeks of August is when Mason starts loosing it and I need him to go back to school for me to stay sane! But now, with the big increase in respite funding that we got just over a year ago, I am finally catching up on rest. After 6 years of intense sleep deprivation, I have been able to sleep through the night for most of the last two years! Woo Hoo!! And with the respite, I get many breaks from the CONSTANT busyness of Mason as well as all the other issues.

Yet I am also ready to get back into a routine (eeeek! I actually mean that too!) For those of you who don't know me that well, ummmm, can you hear the laughter of those who do know me well? I tend to be a lot more spontaneous and random than structured. But it's something I've learned to deal with.

So I want to keep you up to snuff on the hallucinations and violent episodes I told you about recently. I have not seen any hallucinations in 3 weeks. Although Mason was at Grandpa and Grandma Martens this weekend, and Grandma described something that sounded like a very short version of his hallucinations.

We have also seen less of the violence. There was one episode last week where he threw over the dining chair and a coffee table. I put him into time out (he didn't want to cooperate, so when he's like that, I have to lay on top of him to keep him in time out. I know I have to follow through and make him stay in time out every time in order for that form of discipline to keep working, otherwise I'm hooped.) As soon as that timer went, he calmed down (he fought me the whole time in time out. Sometimes he sits nice but grumpy in time out). I had a little discussion with him regarding his behavior "Are you going to be a good boy now?". He then nods his head with his bottom lip sticking out a mile. He then tips his head towards me for a hug. I then wrap my arms around him for a moment before he gets going with that smile back on his face. I instruct him to pick up the chair and coffee table, and he does just as he is told. After that he is quite well behaved for hours or even the rest of the day. Amazing how consistent discipline works, even though it can be extremely difficult to follow through at times!! We spent 6 years of it not working at all, so using time out with Mason is extremely valuable. This particular day, he'd had a seizure just before the violent tantrum began, so I think that may have played into it as well. (there is a BIG difference between a regular and a violent tantrum)

We have an appointment with Mason's neurologist on Oct 15, sooner than originally planned. I think the plan was to go back next year sometime.

Well, I'm off to bed now. we have to get up EARLY tomorrow. No more sleeping in. All of us are night owls.

Thanks again for your prayers for us!!!

MARTENS FAMILY NEWS BREAK!!

2008-08-23T23:55:00.000-07:00

Hello again

When I sent out the update a couple of days ago, I forgot to mention the Potty. So because this is one thing that some of you are very curious about, here's the story.

WARNING: Reader discretion is advised! Some of the content in the upcoming update may cause some readers to feel uncomfortable or grossed out! Parents who have gone through the process of potty training have already been desensitized and have nothing to worry about.

Well basically the Potty Training has come to a plateau. Mason will go pee on the potty when we ask him to, but won't initiate it. He is usually quite cooperative. Poop, on the other hand, is still happening in the Good Nights diaper. It wouldn't be so bad if it only happened once a day, or stayed solid.

MARTENS FAMILY NEWS BREAK!!

Twice now Mason has self-initiated going pee. :) :) :)

Today was the second time. I heard the bath water running. (He will sometimes have 2 or three a day, then other times will refuse to bath for days on end) Anyway, back to the bath running... I went to look, and there he was, standing buck naked with yellow water in the toilet!!! Isn't that exciting?? I sure was excited! Didn't think of taking a picture. Oh well, I guess you don't mind seeing that one..... SO, he knew he wanted to take a bath, and the routine is to go pee before a bath, and that is what he did! Had a bath. And went pee first.

Shirley

Medication and Psychosis

2008-08-22T23:49:00.000-07:00

Hello dear friends and family!

Now that I look to what I've written, you better grab a cup of coffee while reading this!! It turned out a tad longer than I had planned.

So much has been going on with Mason, it's just incredible! But first I want to begin with a prayer request. I don't want to be too generic, because we really covet your prayers for us and with this you can pray specifically.

After being on the same 2 medications for many years, Mason has started having some rather disturbing side effects from one of them. They include normal tantrums turning into violent episodes. He looses control to where we can't do anything to stop him or calm him down. Throwing things (like furniture and rocks etc), kicking, screaming, hitting, etc. He is about 65 pounds and very strong. This also happens in the car where it feels like he'll kick my seat loose and smash the window out. He was doing this kind of thing up to several times a day. I went down a dose on the one medication when I read about it's possible side effects.

Another thing that started recently is that he is having episodes of hallucinations. Three of them happened about 6 am, lasting about half an hour or so. Among other things, it looked like he thought his bed was attacking him, screaming, look of intense fear in his eyes, etc. He also pushed me away, screaming etc. I must have been part of the hallucination as well. There was some other stuff going on as well, but you get the idea. The most recent episode happened in a fast food restaurant. It was much shorter, thankfully, although he spent the rest of the day VERY grumpy and difficult to manage with several violent outbursts.

The doctor is having him go down on that medication very quickly and up on the other one (which is a 'good mood' drug). So pray that this is the answer, otherwise I suspect it could be a change happening in his seizures, which could be much more difficult to control.
.........

Sooo, in spite of these difficulties, we have had a great summer! Mason continues to surprise us with new words, even putting 3 words together into a sentence!! " you... 'cared.... me" you scared me is a complete sentence!! isn't that great?!?! I believe he actually thinks in sentences like we do! But the abnormalities, seizures and delay from the seizures makes it hard for the whole system to work properly. And yet, we are seeing constant progress!! :) He understands so much!!! He catches on to stuff we had no clue he knew! Even using new words appropriately.

Oh and he likes to do everything himself! And everything he sees us do! Pour his own cereal and milk. A little messy at times! Toast into the toaster, and spreading his own jam. He now has figured out that he can go into the pantry and scrounge for snacks. ( He can't have learned that from me, could he??) He even mows the lawn by himself. Well, some of it. Let's just say it's a rather unique pattern, that I have to go and 'fix up' later!!

Something else that is absolutely fantastic is that he is understanding the concept of time!! "Later", "Tomorrow" , "In the morning", "Wednesday (or any other day of the week), are concepts he now understands. Although he doesn't know when Wednesday (or any other day of the week) is, he knows it's a different day than today. For example, if we would mention the word 'trailer' or 'Grandpa', he would totally flip out if we didn't go right then. Now, we can say, "we are going to the trailer tomorrow, or Thursday, or whatever" and he is satisfied! We don't have to be as cautious in what we say. We can reason with him a little more.

Mason is very much at the 2 - 3 year old age developmentally, although there seem to be things he does that are typical of 9 year olds. The bodily function noises continue to amuse him, as do other 9 year olds apparently! :)

He can maneuver his way around a computer better than some adults! I won't mention names here..... :) He was out at Starbucks with 2 dear friends of mine and his laptop. Apparently they tried figuring that thing out for 15 minutes and finally gave up and Mason just did this and that and had it going in no time. "Not only was I outsmarted by a 9 year old, I was outsmarted by a child with special needs!" was roughly what I was told by one of the women. Once again, I won't mention names here!!! LOL :)

We've been spending a lot of time down at our trailer ( in the US, south of Bellingham). Mason just LOVES it there. There's a 15 year old boy that looks after Mason for me down there, so I get respite breaks there as well. And Mason just loves him and has a great time. Mason has spent a lot of time in the pool there, pouring water from one container to another and lots of jumping in. What's been really neat this year is that I can actually lounge and relax while he plays on his own in the pool (with a life jacket on).

Because Mason wants to do everything we do, we purchased a Trail-a-bike. It's attached to our bike and he rides along with a huge smile on his face!!

In June, our friends, Dave and Wendy got married! Mason had the honor of being Dave's ring bearer! The rehearsal was quite interesting! We were in the little church practicing. As Mason was walking down the isle with the little white satin pillow tucked under his arm, the music started. And so did the boy! The other direction! He ran straight out of the church, out to my car, which was locked, but had a window open. He threw that nice pillow into the car and stood there, refusing to move. After bribing him with ice cream later and telling him Dave needed his help, Mason complied and went back in. As he adjusted to the environment and it's sounds, the real Mason showed up! He would stand on the stage up front with Dave and when he saw the main doors open he began his job as wedding planner! He crooked his finger and told the cute little flower girls, "Girls! Come!" in his usual boisterous voice. He bossed everyone coming down the isle in this manner, including the bride! LOL When everyone was up on stage his directing continued. If someone wasn't facing the pastor, he would make sure they were facing the right way. And so it went. It was a very entertaining evening. As a last minute addition, Wendy decided that Asia and Sydney would also be in the wedding as Mason's attendants. We just didn't know if he would walk down the isle on the day of the wedding, so the girls assisted him.

So on the day of the wedding Mason went all shy on us while walking down the isle! Walked super slow while looking at all the people with a little grin on his face. Good thing the girls were helping him move along! So up at the front he did some of his directing and motioning. When Wendy's daughter, Anna, appeared, Mason shouted out "Anna!!" Everyone broke out in laughter. Most or all of the guests knew or knew about Mason, so they understood.

Later during the message Mason stood up with his 'cell phone'. It's a demo, so it looks and feels real. He held it up as though he was taking pictures and video of the wedding. And seeing as we were in the second row, everyone could see it. Lots of smiles around the room!

Over all, he did remarkably well. You just never know with him, and Dave and Wendy were very well aware of that when they decided to have him in their wedding. It was a fantastic day!

Daryl has designed a new website for these updated. So if you want to check it out, it's www.masonmartens.com Sometimes I add stuff there that I don't send out in an email.

Other family stuff:

Asia is going to high school! Our baby is growing up! Grade 9 is just around the corner and she is very excited! Along with the regular academics, she has also signed up for the school sports package and Spanish! She was tired of French and wanted to try Japanese. We had a little chat with her and she came to see how much more useful Spanish would be for her. Our church sends out short term missions groups to Mexico quite often, and our friends are church planters in Spain. So those opportunities seem more realistic to her now. She is taking this year off electric guitar lessons, soccer, and cheerleading. So that will also mean less driving her around. She is also eagerly anticipating the activities of the high school youth group at church.

Sydney is going to grade 7. She had a big growth spurt this summer. 1 1/2 inches! I guess we have to do some serious back to school shopping for pants! She will also be getting glasses this next week. Her eyes have difficulties focusing and the options are glasses or vision therapy. The therapy is very expensive and kinda in the grey area of medicine. We have not yet found enough information to justify the cost. The glasses will just enlarge what she's reading so that it's easier on her eyes. Sydney is continuing with her piano lessons, but was very heartbroken in June when she could not perform at her recital due to a very large blister on the palm of her hand. :( She is very excited that she can join Vertical Edge, the youth group at church for grades 7 & 8.

Daryl is still at Linwood Homes doing a lot of computer stuff. He tells me all about it, but had a lot of technical words and descriptions that I try really hard to understand! I know he does their web designing and loves that. He does some on the side as well. www.3six3.com And then there is golfing. He shot a 78 this summer! There too, in describing the WHOLE round to me, he uses words like birdie and eagle and boggy. I know they mean one or two over or under par. You'd think I'd get it by now, after 22 years married to him!

I, Shirley, along with being mom and wife, am still very involved in the women's ministries at our church, the main focus being Oasis on Wednesday mornings. We'll be doing a Beth Moore Bible Study this fall as a whole group. I started already and am very excited for this fall! I have also been asked to be the main speaker/facilitator at a weekend retreat this October. I think it may also involve leading workshops, but the details will become clearer in the next while. I'm very excited and will get nervous yet! I'll be speaking four times on the Thanksgiving weekend. The retreat is for families of children with special needs, so of course near to my heart and experiences.

I can't leave out Princess and Bindi, our two cats. They like to eat and sleep and run around like crazy when we are trying to sleep. The girls just adore them, of course. Princess sleeps with Sydney and Bindi sleeps with Asia. It's really funny when Asia comes home from babysitting or has been away. She'll go up the stairs, and when Bindi notices, she zooms up the stairs ready to crawl into bed as well! Mason likes to chase the cats and pull their tails. Typical boy.

Daryl and I are on day 4 out of 5 days straight without any children. We've done lots of relaxing and reading. Much needed. We continue to be extremely thankful that we receive respite funding from the government to be able to get breaks from the constant needs Mason has. Even though he is doing extremely well developmentally, his challenges just change, and we still have to watch him very closely. With no concept of fear, he will still run out onto the road, or lay down in the middle of it, or do other random dangerous things.

I could go on with more stories, but your eyes may have glazed over by now. Daryl says I should perhaps do this in two parts so I don't bore people. So I put a picture in to divide it. LOL

Well by for now!

Open it Up!

2008-04-12T23:24:00.000-07:00

It seems we always have an interesting story about our boy. This evening he was in bed (mommy and daddy's) playing on his laptop. We would check on him occasionally, but he likes being independent these days.

So I had been in there helping him on his computer, well actually, offering my help, but he didn't want it. He had put a DVD in, and normally we get it started for him because it's a bit complicated. Well I guess he's been watching us. He clicked on 'Finder', then 'applications', then opened the DVD player to watch his movie!

Totally amazed, I went into the living room to tell Daryl. Shortly after, we heard screaming. So I ran into the bedroom to find him holding an OPEN bottle of nail polish!! With a puddle of it on the keyboard of the computer!!!! Daryl rescued the laptop, while I attended to Mason, who had rubbed some of it into his eye. I washed him up good and it doesn't look like he got more than fumes into his eye to cause a bit of pain. I guess I'll find out in the morning if his eye is stuck shut or not.

Later I told Daryl what a pain it is sometimes that he knows how to open things up! (Thinking of the nail polish) This is just after I was in wonder and amazement at how he could open a complicated application program on the computer.

I guess certain parts of his brain are developing faster than the 'common sense' area!!!

Laundry Soap

2008-04-09T15:17:00.001-07:00

(Picture @ right is taken by Mason himself. His eyes are two different colors)

Mason just turned 9, but is still at a 2-3 year old stage developmentally. So he loves to help, with just about everything. One of his favorites is helping with laundry.

Yesterday, I asked Asia to check on him. She called from the other room, “MOMMY!”. I ran and looked. And there he was, sitting on the floor, in front of the washer (front loader) and dryer, both doors wide open, trying madly to put the clothes back into the dryer. He also had the almost empty bottle of liquid detergent right there, with the lid off. He was helping Mommy with the laundry!!

Right now the washing machine is going for about the 7th time, trying to rinse out all the bubbles. There were a lot of them!! More work for mommy!

It made me think of a relationship with God. Very often we try to ‘help’ Him, not realizing our limitations. You see, Mason often helps me with loading and unloading the machines, but he is not ready for pouring the detergent. How often do we go ahead and “help” other people for God, yet end up making more work for Him in the end?

Bottom line: Help God where He is asking you to be. Don’t interfere, or try to initiate something on your own. If you wait for Him, He will guide you through whatever you are meant to do, with the best results! And keep quiet until God asks you to say something!

Allergy Testing Appointment

2008-01-15T17:04:00.000-08:00

Hello everyone!

Quick version: the doctor appointment regarding allergy testing went very well today. Long talk with the dr, and did not need to be poked! :) His fevers are not an issue.

Now the interesting version!!! LOL

It all began yesterday when I talked to my supportive, Dear Husband on his way home from work. (we planned for him to come along to the appointment to help me and be supportive) It basically went like this:

Daryl, "Does Mason really have to go? You know I'm going to try talking you out of it during the appointment!!"

Shirley,"Should I call my friend to come along?"

Daryl, "We'll talk about it later."

So we got off the phone, and I immediately called my friend who had offered this help a month ago. Yes, she could come!! Last thing I needed was Daryl trying to derail what needed to be done!! It was GREAT to have her come along and help. Even though I (thankfully) didn't need help to hold him down to get pricked, she kept Mason busy so I could talk to the doctor without distractions. Which is huge.

So, because I know pretty much all the questions they're going to ask me, I had a two page brief history from birth to now written up. So when the doctor started to ask about Mason, I just handed it to him. It always makes the time and topics more efficient, and makes it clearer for the doctor to evaluate everything. I always do that when we see someone new, and have done a lot of documenting before surgery.

So regarding allergies: he does not have any allergies beyond the grass ones we saw in summer. Basically it is the doctor's opinion that the allergy medication is causing the seizure medications to metabolize slower in his liver thus increasing the dose in his blood system, as well as keeping it in his system longer, rather than having the liver eliminate it as efficiently. So I'm going to experiment a bit with giving him a lower dose and see if it will still help control the seizures while using the minimum amount of antihistamine. I will talk further with Dr Connolly at Children's Hospital in March.

Because Mason was not showing any signs of allergies, testing at this time is not necessary. We were in the appointment for 40 minutes with me asking a lot of questions, and I am very satisfied with the explanations.

Regarding the fevers that Mason has been having: Because they increase the seizures, I needed to check them out. This doctor ( a pediatrician/allergist) said that kids this age have an average of 1 or 2 fevers per month. That surprised me, because Mason is typically the kind of kid that gets sick once or twice per year!! But I think because he is now interacting with others a lot more (seizures are not putting him out of commission) he's catching the bugs that are going around! And the reason that he often does not get symptoms is that not all viruses have symptoms of runny nose etc!! So it's just a matter of getting the Advil into him quickly when the fever hits.

We also talked about a couple of other allergies: Mason (and Asia) used to be allergic to peanut butter - but NOT peanuts. The more natural the peanut butter, the bigger likely hood of breaking out into hives. The types with more additives like sugar, oils, etc (like Kraft or Jiff) would not cause a reaction. The doctor had never heard of this before. Both kids grew out of this allergy.

Then we talked about dairy. Mason can tolerate cheese, whipped cream, butter and a trace of icecream. But not milk and yogurt. (Mason used to not be able to tolerate any at all. Even the margarine in a cookie would cause severe runs out the back end) So we are going to try lactaid, to see if he is lactose intolerant as the doctor suspects. That would make life a lot easier. He's been on goat milk for 8 years, and we always have to check ingredients and watch out for everything.

Well there we go. That appointment went soooo much easier than I expected (especially after getting my supportive DH out of the way!!!!) Thank you to my friend M E for coming along on such short notice!! (Then we went for lunch mmmmm) Thank you to all of you who prayed. I got ALL the answers to my questions. I wish I could go for lunch with ALL of you!!

btw, Toilet Training is going EXTREMELY WELL!!!! That timer goes every 30 minutes and Mason jumps up and off he goes to the bathroom ('froom' as he says it). At home he's still in a diaper, but it stays dry nearly all the time!! :) :)

Well, TTFN!!

Shirley

2008-01-12T20:37:00.000-08:00

Well, I have been thinking about sending out a prayer request email, but a major one is already turning into a praise!!!

We are in the midst of toilet training Mason! He will be 9 in March, so it's about time!!!!! Thankfully we've been on a funding program that provides diapers, and now Goodnights, wipes, and bed pads for us. And they get delivered to our door as well!! That's a lot of years of a costly necessity!

Mason's special ed teacher did some in May and June last year, and with the fall being so busy for especially special ed teachers, she started again on the first day back to school after Christmas. And he has been fully cooperating!! I started at home on Tuesday after school. The first four times I literally had to peel him off the floor kicking and screaming and hold him down on the toilet for 5 minutes. (he didn't produce anything either) I was EXHAUSTED!! I have a timer that beeps every half hour. On the fifth time, he heard the beeper, when and got it and went straight to the bathroom without a fuss!! So I knew it would be a BATTLE of the wills!! So those next few times, until bed time, he made a deposit into the toilet!! Of both varieties!!! ( I'm sparing you some of the actual details, but I'm sure you understand...)

So Wednesday he only fought me two times, then became very willing, and actually only made a deposit into his diaper only once all evening!! We were also calling a variety of people to celebrate with Mason over the phone. He really liked that!

Today, Thursday, there has been NO opposition at all!!! In fact, each time he sat down, he produced within the first half minute!!!! WOW AMAZING!!! (this is the most excited mom you will ever encounter regarding toilet training!!! He's a big boy, and eats a lot, and you can imagine the rest...)

This is something I really didn't think would ever happen. So I think this falls into the 'miracle' category.

Here is a prayer request, though. He has an appointment with the allergy specialist on Tuesday, Jan 15 for allergy testing. Daryl will come along, I will need the help. I don't think Mason will be very cooperative.... His blood test results came back with elevated white blood cell count, but he also had a cold that day, he coughed a few times (that's a bad cold for him...) So far we have no clue why he's getting the fevers, other than I think that's as bad as a cold gets for him...

Christmas holidays went well this year, unlike last year. Our funding increased for respite, so that really came into play. Last year I could hardly wait for school to be back on. Other than the average tantrums, this Christmas went really well.

He has an EEG and Neurologist appointment coming up in March. Regular check ups.

He continues to progress like crazy in speech and comprehension. Love it.

So thank you for your continued prayers and interest!

Shirley

Answers to Prayer

2008-01-12T20:36:00.000-08:00

Thank you, Thank you, Thank you for your prayers!!!!!!!

First off, it turned out to be a 'virtual doctor appointment'. Mason wouldn't get out of the car, so the girls stayed there with him and I had the appointment on Mason's behalf. I really like our doctor, and he gives me a lot of latitude. So he wrote up what I needed etc. :)

So I decided to check out the small blood test clinic, in a strip mall so I could see in the window. There was nobody in there, so I quickly popped in to see how many bodies would be available to help. There were two technicians in there and were ready to do it. Then Mason refused to get out of the car again. We finally bribed him with an ice cream cone. (he says 'ice cream' really well!! and he can have a tiny amount of it : >) So he went in, and right away turned around and ran back to the car. I noticed someone standing nearby, but ignored her as I struggled with Mason, trying to get him back into the clinic. I then let Mason back into the car.

The person started talking to me... it was Nancy, who I've known for several years, but haven't seen in a long time!!! She offered to help!!!! Can you believe the timing?????? So we finally got Mason in and onto the bed. That was no small feat!!! Nancy held his legs down, I lay across his torso and held his left arm down. One technician held his right arm straight while the other drew blood. We could not have done it without Nancy!!! Part way through, Nancy told Mason is was almost done. He instantly stopped screaming and struggling! When they pulled out the needle, Mason said, "Thank you."!! We all laughed!! As we walked out, Mason called back, "Bye bye!" - happy as a lark.

And so off we went to get an ice cream. :) :)

So God provided help in the EXACT moment I needed it, AND I get to re-connect with an old friend! :)

Shirley

2008-01-12T20:35:00.000-08:00

Good evening!! Merry Christmas season!!!

Well first, I'll tell you something exciting. A few weeks ago Mason started calling me "Mommy"!!! One of the most exciting milestones ever!! At least for me. He's been able to say "Mom" for a few years, but there's something about being called Mommy... ahhhhhhh.

A week later he started calling Daryl, "Daddy"!! Two syllable words have been extremely difficult for Mason, so this is quite huge.

Mason loves singing the christmas songs, like Rudolph the Red Nosed Reindeer, and Frosty the Snowman (loves watching that on TV!!) I have no clue what he understands about the real Christmas story of Jesus, but he says 'baby' when he sees the pictures or nativity scenes. He loves playing in the snow ... yes we've had it a few times now. And it's cold enough to have to wear a jacket, not just our cute puffy vests. Well, the girls are still wearing their vests, I can't convince them to dress warmer...

Thanks again for your prayers for my friend in Alababma, whose little boy has what Mason has. She was so grateful, and they've adjusted the medications as a result of the testing. Not sure yet how that has affected the seizures. Time will tell.

So here's a prayer request for Mason:

He has some unusual things going on that are affecting him and increasing his seizures a bit. I will emphasize 'a bit', in the big picture, it's hardly anything, BUT we don't want to start a trend of increases in seizures.

Unusual things:
1. In summer Mason had hayfever for the first time in his life. Because of the seizures and medication interactions, he's never been able to have cold or allergy medications. But the sneezing etc got so bad that it triggered a lot more seizures and I finally asked the pharmacist if there was anything we could do. So we gave him the newest one on the block. It worked on the hayfever, and brought his daily seizures back down to a few mild ones per day. :) The unusual thing here was that after the allergy season was over and I stopped giving him the allergy meds, the seizures went up again! So I have been trying it out this fall, and sure enough, when he is taking it daily, seizures are down.

2. Mason has been having random fevers without getting sick. They are very low temperatures, but what happens is that they trigger seizures, and if not dealt with they go into status, which means he continues to seizure without stopping. Tylenol does nothing, but children's liquid Advil works, thankfully. The next step is IV fluids in the hospital, not pleasant!!! But why does he keep getting these fevers? He had one a couple of weeks ago, without any symptoms of illness, and had another one today, and once again doesn't seem sick at all.

So I talked to our nurse at Childrens Hospital today. One of Mason's meds can lower his white blood cells, so he needs to get a blood test to check that. I'm going to need to take two or three people along with me to help hold him down for that. We also need to find out what's causing them. So far we're only treating the symptoms to keep the seizures at bay.

We are also going to look into allergy testing. We suspect he may have some underlying allergies that are triggering the seizures, even though he doesn't sneeze or sniffle or anything.

Time to pray for: Friday December 14, 3:30 pm for Dr appointment (family doctor) then the blood test some time after that. Then pray for God to give his wisdom, guidance, and knowledge to figure out what's going on, especially as Mason can't communicate any illness, or what he's feeling, with us.

FYI, he has several seizures a day (since a few months after surgery, two years ago), but still next to nothing compared to what it used to be like. He has been waking up at night again with a seizure, but falls back to sleep quickly. (unless he's on the allergy medication, then he sleeps through the night - no seizures to wake him up)

So there we go. It's actually kinda nice to not be asking for prayer nearly as often as I used to. So when you don't hear from me it's because Mason is doing so well, and I get caught up in the 'normal' of life as it is now!!

Well, that was longer than I'd planned to write. Thank you in advance for your thoughts and prayers. And we (the Martens') wish you a wonderful Christmas Season with your friends and families!!! I often think about how amazing it is that Jesus chose to leave his incredible home in Heaven to come to earth, to 'move into our neighborhood', to connect with us and invite us to choose to be His friend. That's what it's all about!!! And all we have to do is say, "yes to Jesus, I want to have a relationship with You!!" If you are reading this and have no clue what I'm talking about, just email me and I'd love to explain more!! He did not come to make another religion.....

Merry Christmas!!!

Shirley

2008-01-12T20:32:00.000-08:00

Hello dear friends

This is not so much an update on Mason as a new connection for me. Recently I met a young mom from Alabama on Facebook who has a little boy with the same seizure disorder that Mason has. Kristy has a little boy, Jon Andrew, who is 2 1/2 with Infantile Spasms which is now progressing into Lennox Gastaut Syndrome. Exactly like Mason, only we are a number of years ahead of them. They are in a very difficult place right now, bleak, dark, seemingly no hope. We have had several opportunities to connect online, and have had a couple of long phone calls as well. I feel extremely privileged to be able to encourage her and give her hope, seeing as we are further down the SAME road. Having said that, this is the first time in 7 years that I have had someone to talk to whose child has the SAME condition. Shows how rare LGS is. I'm sure there are others around, I just haven't met them yet. Maybe I'm too shy.....

Anyway, we talked at length on the phone today and I told her how wonderful it's been to have so many people pray for Mason and us and really encouraged her to let those in her life know when and how to pray for them. I also asked her if I could pass it on to my Mason update people. So here is her email!!!

FYI: Mason has had several of these longer EEG's done and it's torture. This is what happens: we strap him down in a full body velcro kind of thing, shoulder to feet, I lay on him, trying to calm him down, as he is screaming the whole time, face beet red (one time he even had peticial hemorrhaging - tiny blood vessels bursting all over his face because he screamed so hard and so long). So for the next 1/2 hour this goes on while the EEG technician marks his head and then glues 25 - 30 leads (wires) onto his head. This happens with all EEG's. In the 24 hour ones ( or longer) he has to stay in bed for the whole time because they monitor him by video as well, and he can't be running around for that!! Never mind that he's hooked up to a head full of wires.

So knowing how hard this is, I would like to ask you to take a quick moment to pray for Jon Andrew. LGS is one of the most severe seizure disorders there are, so the road is long and hard ahead for them. Pray that God will give each of the doctors, nurses, technicians, and all others involved with this baby, HIS wisdom, HIS knowledge, HIS understanding, HIS direction, HIS peace to the family.

Thanks so much,
Shirley
by the way, Mason is doing great, other than having to go to school in his pajamas this morning, because he refused to get dressed. His routine was thrown off a bit this morning. Not that he cares what he wears to school! There was no way that I could convince him to change, and he's just to big for me to force him. He is exerting his desire to do what he wants to do. He is VERY aware that he has CHOICE!!!!

Dear friends and family and church family,
Just wanted to ask you to pray for Jon Andrew tomorrow (Tues until Wed) as he has a 24 hr EEG done. Pray that Jon Andrew would sleep while they are hooking up the EEG machine to his little head and that the doctor would have divine wisdom in next steps for him. Neurology is more of an artform than a science because of the brain's complexity. Jonathan and I have had lots of anxiety over all the seizures lately. We don't know what God's plan for Jon Andrew's life is, but we ask that you'd pray for our willingness to surrender our will to His.
Thanks
kristy

Looking Back...

2007-10-23T15:55:00.000-07:00

I found a note I wrote on September 19, 2005 (10 days before surgery):

Tonic Clonic (grand mal) seizure at 7 am. I woke up to Mason's face buried in the blankets and teddy bears. I imagine his breathing was limited. When it was over, he fell asleep again.

Another TC at 8, then again, less severe, at 8:30. He slept until 10:30.

It's so hard to see this happen. The verse in my head lately is where the bible says that God will exceed my expectations. The Amplified version says something to the effect thatt He will do wha we even dare not ask.

While Mason slept, I thought this (didn't pray it, just thought it): Dare I ask for the full restoration of his ability to learn and develop?

"COME BOLDLY" were the words I heard in my head.

OK, so I did.

Then in the afternoon I drove past the church on McMillan. The words on the sign said, "I will sing to the Lord for He has head my cry."

Now, two years and one month later we are seeing exactly this happen. Back then it was an extremely scary thing to pray ... with confidence? I don't know how confident that prayer was because we had seen 5 years of no developmental growth at all. God continues to completely exceed our expectations, as we are seeing non-stop progress!! He has restored Mason's ability to learn!! Notice that the thought to ask for Mason's full restoration was not what I asked for (I don't know why!? I guess it wasn't what God wanted me to ask for!).

Two Year Update (since surgery)

2007-10-20T23:37:00.000-07:00

Well, it’s been a VERY long time since I did an update on Mason and our family. I just checked … five months actually! First let me reassure you that the reason for the gap is because Mason is doing so well. But many of you keep asking when the next update is coming, so I’ll do a quickie timeline of the last few months:

May & June ~ Potty training. Well at school anyway. He was very cooperative with everyone at school. They set him in the bathroom every 10 minutes and he was dry most days. My plan of action was to let him get into the pattern of it at school, then carry it over to home. Yeah… the best laid plans… He decided that he would not do it at home. Plain and simple. And forcing him and trying to bribe him just didn’t work. So I really have no idea how it’s going to come about. They are going to start working on it at school again soon. So that is a huge prayer request: get this boy trained! I think once he decides to want to do it, it will be a matter of days. It’s just getting to that point! (we do get our good-nites and wipes supplied – even delivered to our door) (they’re really good at school with it, and I doubt that his friends know, so don’t tell any little kids!) So between all three kids, I’ve done 13+ years of diapers.
~ Respite Funding. It came through! It is so neat seeing how God will exceed our expectations! The funding came through without a glitch. Well, one glitch … we had to wait an extra month for the first payment. We get direct funding, then choose our respite caregivers. It was in the area of caregivers that God really exceeded our expectations. My first thought was am I going to find enough people to use all this money for? Well, YES! I had people that were available for overnights, some for day hours only, and even some teenagers down at the trailer here and there! I never went without help this summer when I needed it!! And Mason of course loved going with all these different people. He now has several extended families! He is also exposed to many new experiences that he otherwise would not have. The reason we need so much more respite right now is because he is going through a phase where he does not want to cooperate with me very often. We are seeing a LOT of 2/3 year old behaviors. And as I’ve put it before, it’s hard peeling an 8 year old off the road! 2 year olds are easy to pick up!

July & August ~ LOTS of time down at the trailer. (Whatcom Meadows ~ whatcommeadows.com) I had many opportunities to be down there with just the girls, with friends along, the girls and Mason, or with Daryl and the girls. Daryl went to a Mariners game in Seattle with the girls, we all went to Deception Pass beach many times, lots of camp fires, girls went biking, sleepovers with our campground neighbors (their kids are the same age as ours and our families get along well), shopping, walks, swimming, building projects (I built a deck onto the sunroom attached to the trailer this summer all by myself!! The kids helped…). ~ Because of the respite, Daryl and I got away for 5 nights in a row this summer!! First time in nearly 14 years! By the fourth day I was driving Daryl nuts. He kept telling me to relax and read a book. Well I’d done that! I am so not used to relaxing that many days in a row! I’ll try again sometime. Now I know what to expect, and I can plan better for it!
~ Camp Squeah ~ as all summers, the girls spend 5 days at bible camp. This year Asia also went to ‘What A Girl Wants’ 5-day camp at church. (not overnight) It was an amazing week focused on purity. They had a lot of fun, discussion groups, a fashion show and much more. They addressed many, many teen issues, purity, peers, health, modesty, etc. All from biblical perspective. She wants to go again next year! They have a younger aged group that Sydney wants to go to next year.
~ Daryl got lots of golfing in this summer, and I had a lot of unstructured time. I didn’t realize how close to being burnt out I was. The timing for the respite was perfect.

September & October ~ Back to school! Asia is in grade 8 and Sydney is in grade 6. Both in the same middle school. We are happy with the teachers they both have. Both girls are doing well in school and are involved in a few activities. Asia is in grade 8 band (drums) and Jazz band (electric guitar) as well as continuing guitar lessons. Sydney is in grade 6 band (drums) and continues taking piano lessons. Both girls do well in music (a talent they do NOT get from me!). Asia is playing house league soccer and started school cheerleading. Sydney’s new love is basketball, so she has joined Friday Night Basketball (Athletes in Action). And yes, they find time for homework, family, friends and relaxing! After many years of having to baby-sit Mason so I could get a break, they haven’t had to do that anymore. Instead, I find that they are starting to want to play with him! And he of course, adores his sisters. The respite had done more for us as a family than I thought it would.
~ Youth groups for the girls. Asia goes to Vertical Edge (grade 7 & 8) and occasionally plays electric guitar in the VE band. Last time she was going to add to that and sing as well, but she hurt her arm, so couldn’t play guitar, and wasn’t comfortable up front without the guitar. Next time. Sydney has started Jump 6, youth for grade sixes, something she’s waited for since Asia was in grade 6.
~ Mason is in grade 3 as well as the Special Ed class. The combination works so well for him and he loves school.
~ I am back at being involved in the women’s ministry at church. I am leading Oasis, the Wednesday morning group and really enjoying it a lot. It’s a lot of work, but the whole team of women is great! I am learning so much, being guided by our women’s pastor, and from so many others! Our theme this year is Pay it Forward – God’s Love, and we make a plan of action each week to reach out. We are definitely pushing past our comfort zones a bit!

Mason Progress Report ~ Seizures ~ In general, they’ve gradually been going up since last winter. Still very slight compared to what they were before surgery. We adjusted meds a bit, which seemed to help, although that brought on some Tourette Syndrome-like vocal tics, which sounded like grunts last spring. That wore off, but we still see some physical tics on occasion. One of his medications has that as a rare side effect. Mason will be having an EEG and Dr. appointment sometime around January, so we’ll ask more questions then if all continues as it is. Mason started sleeping through the night a year ago, but started waking at night with seizures again in the last few months. (I don’t keep close records like I used too, so I lose track of time/days/months) This summer Mason got grass allergies and hay fever. He’s never had that before, but they did a number on his seizures. He had a few more per day, and they were more intense. Because of his medications, we are not able to give him cough meds or allergy meds. But I finally called the pharmacist and begged for something. He was sneezing so hard, and his face was red and swollen. So she gave me something for him. It calmed the allergies as well as the seizures. He started sleeping through the night again! So that’s another area to explore. I think we may be looking into allergy testing and seeing if there is a link there. I’m continuing to give him the allergy meds even though that season is over. When I stop, I see an increase in seizures again and waking at night. So he may have something else going on.

~ Development ~ WOW! Amazing, Incredible!! It’s been just over two years since his surgery, and I think he has gained two years of development in that time!! We see changes every week, nearly every day. So I’ll try to list off some examples.
~ huge increase in vocabulary. ~ Mason is trying hard to say full words. Example: house (instead of hou__), cat (instead of ca_) etc. ~ He is very willing to repeat/practice words nearly all the time.
~ We have begun copying sentences in speech therapy. Example: when he and I were driving home the other day and he said: “dad … hockey”. So I had him repeat after me one word at a time: “dad … is … watching … hockey”. We must have done that at least 20 times! And there was noticeable improvement in his words and the speed in putting them together in that short time. Today, after lots of coaching, he said “I … want … cheese”. All by himself!! Lots of cheering! His speech therapist is loving working with him, kids with special needs that learn this fast are less than rare!
~ He understands what we’re saying even when we “talk around” the subject! ~ He can verbally spell his name sometimes. He’ll pretend to ‘write’ and say the letters of his name. (I remember when the girls were around 2 or 3 and they thought they were actually printing words!!)

~ He really knows what he wants and can often, brokenly, communicate that to us. When he can’t communicate, or wants his own way, or wants something he can’t have, we see his very strong will! Thankfully time-out still works. ~ He wants to do everything we do! Pour milk, cereal, set the table, make toast. One morning he was determined to make his own toast. He put the bread in the toaster, pushed it down. Got a plate while he waited. Toast popped, he took it out and put it on the plate. I got the jam ready, but he scooped it and spread it on the toast. Putting the jam on took him about 5 minutes – he enjoyed doing this himself so much. He poured his own milk, with a bit of help from mommy. He then took his breakfast around the other side of the counter and ate it. Very proud of himself! We are seeing a lot of these kinds of things.

~ He acts out a lot with me, Mommy. Behaviors that I see all the time, he seldom does with other people. I get great reports from everyone who takes him for respite, and even school – although he’s acting out a smidge more at school than he used to. The word ‘no’ is being heard more there, now.
~ He had a Dr. appointment at Childrens Hospital in July. It was more of a ‘show and tell’ session than a doctor visit! From their reactions, I am certain that Mason is not typical of the results they see. I can only attribute this to the work God is doing. Your prayers, past, present, and future, are all a part of His work!
~ He goes to Church with us. That started a year and a half ago, and for the first while I spent the whole time with him in the preschool area with the toys. It felt so wonderful to attend church as a whole family! Even if I missed most of it. We had a young woman volunteer to assist him for a year which was wonderful! Mason loved it and really did well in following the routines in Kidstown and church. We’ve had some others start to help out there as well. And Mason loves going to church! Well, that seems like it was a bit longer than the ‘quickie timeline’, but it really only scratches the surface of the ongoing changes we see.

Left to right:
Asia, Shirley, Mason, Daryl, Sydney

Daily Miracles

2007-05-14T00:37:00.000-07:00

Hello all!

The adventures carry on here. Mason continues to amaze us all the time.

This Mother’s Day weekend, Pastor Bev prayed for the moms in a beautiful long list of detail, including the moms of kids with special needs. She prayed about the ‘daily miracles’. A few of things impacted me as she prayed this. 1. Others have a window into what God is doing in my life as a mom to Mason. 2. Yes, there ARE daily miracles, even when they seem non-existent. 3. How often I overlook the daily miracles in the lives of our daughters in their own struggles, even if they aren’t as drastic as Mason’s.

So here are some of those daily miracles!
· In the last few weeks Mason has started ‘telling’ us about his day! For example: Auntie Kim played with him in the back yard last week. A couple of hours after she left, Mason looks at me and says, “Kim…….. pay……..box.” He was telling me that Kim had played with him in the sand box! WOW!!!
· He also gets it into his head that he wants to go to the trailer. He is starting to think abstract. Normally he says words that have to do with what he can see or touch – right now. Lately he just says “…ler” (trailer) out of the blue, which means he’s thinking about it without us saying anything. Saturday he wouldn’t get out of the car because he had decided he was going to the “….ler”.
· He is modifying his behavior a little more often when given the choice to obey Mommy, or go to his room for time-out. Putting him on the couch for time-out just doesn’t seem to be working any more. He does not like getting locked in his room for that minute or two!
· Words. He keeps getting more of them and is saying them better. After years of “yeah” or “yup”, in the last two days he has started saying “yes”. Sounding a bit like “yesh”. He wants to speak so much. He tries so hard and repeats us a lot. Most of the time if we tell him to say something he will, eagerly. Then when I want to show him off, he just clams up.
· He fights with the girls more. Yeah, fun….. I keep trying to tell the girls that this is what typical brothers do. They still get mad at him!! I changed vehicles in December. 5 year old Acura MDX - 7 SEATS!!!! Not as big as a van, I liked my Honda Accord because I could zip around. The Acura is actually shorter than my car was! So I can still make easy u-turns for all the times I pass the street I’m supposed to turn at! Now the girls sit in the third row most of the time. They arrive home without injuries, and Mommy is just that much more relaxed and in control of her emotions.
· School. Mason still loves it. I pop into his special ed class often, and he gives me a big hug, or just says “mom” half a dozen times. But he doesn’t cry, he knows he’ll see mommy soon again! The elementary school is doing a musical this week and all the kids are involved. Apparently Mason is actually doing quite well at the choreographed dance steps his grade 2 class is doing!!
· Chalk drawing on the sidewalk. He often takes that chalk and makes little strokes as he says, “M….A….O….N”. He practices ‘writing’ his name a lot at school. He tries to draw a ‘face’.
· Mason loves watching all kinds of TV shows and movies. He is repeating so much of what he hears on the TV, songs, actions. Same with games he plays on the computer. www.starfall.com is an amazing website for learning to read. Well the alphabet and numbers for Mason for now, but it has up to Grade 1 or 2 level stuff!!
· A miracle-to-be: potty training. So far not even a glimpse of it, but one day…………. Thankfully the ‘goodnights’ and other supplies are funded and get delivered.
· We’ve just had an increase in respite funding, and our social worker is looking for more funding for us. Recently we went for a little walk up the street. 6 houses or so. Then Mason decided he didn’t want to go back home with me. Once again the ‘crisis management hold’ was put into effect. But he still pulled up his feet, and I could carry him a few steps, then had to rest. Thankfully my neighbor offered to help and grabbed his legs and we carried him home that way…. Screaming …. Mason that is, although I was inside! But exhausting. Hopefully he becomes easier to manage as his weight and height increase.
· Mason LOVES going to church. He jumps, claps, and squeals during the up-beat music. Sometimes he even shouts “more!”. Enthusiasm without reserve! One time during a slower song of worship, I watched him as he slowly lifted his right hand. He was watching it go up. It looked as though his hand was being pulled up and Mason was just watching it. Was God drawing Mason to himself in that moment? Mason doesn’t have the intellect most of us have, but I believe that God does meet him and communicate with Mason in His own unique way. Child-like faith.
Well that should be all for tonight. There are, of course, many more stories, but you’ve had lots to read for today! Thanks, by the way. Your continued support is so appreciated!!

Shirley

New prayer request:
· Crystal – my second cousin, and family friend growing up – my age, single mom of four – just found out a few days ago that she has 6 tumors. 4 in her brain, 2 on her spinal cord, plus one cyst on her spinal cord. Surgery is coming up for the largest one golf ball size at the back of her brain. Here are her personal prayer requests:
· Prayer requests For now:
· The Doctors - well rested and confident
· the surgery - no cancellations or delays
· No complications - bleeding , infections, freak laryngoscope accidents
· Peace and assurance for me and My family
· That, above all, God will be glorified!

Previous prayer updates:
· 10 year old Cailyn continuing cancer treatments.
· Auntie Darlene. I had the awesome opportunity to fly to Winnipeg for a few days last weekend to see her. (thanks Daryl!!!) I got to spend time with her and Uncle Frank and their daughters. She is nearing the end. She wants to go home now. She is so ready to meet Jesus. Pray that it will come quickly and without any further pain. Thank-you Auntie Darlene for your endless encouragements to me.
…but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

Spring Break

2007-03-23T23:25:00.000-07:00

Hello all!!!!
Well, we’re nearing the end of two weeks of Spring Break. School starts in less than 4 days. Mason needs it badly. We started off with the time change at the start of the break, and he has still not adjusted. I think back to school will help. He’s been quite uncooperative for the most part, much like the Christmas break. I think he’s really out of sync when he’s not in school. He’s had sleepovers and day visits at Grandpa and Grandma Martens, Auntie Kim & Uncle Tony, and some respite, so he’s had LOTS of fun, but he’s ready to get back into routine. So am I.
The girls just returned from nearly two weeks away. They were in Manitoba with Grandpa and Grandma Wiebe, Auntie Connie & Uncle Zac, Auntie Lisa & Uncle Kevin, and all their cousins. I asked them what their favorite part was and they rattled off ALL the names of the people they spent time with. They really got “familied up”!! G & G drove out and picked them up, then the girls flew home all by themselves for the first time ever. This will be a trip they will never forget!
This whole learning thing with Mason is just not ending!! He can put on his own shoes (mostly on the wrong foot!) and his own jacket. He puts it down on the floor, puts his hands into the sleeved up-side-down then flips it over his head and “tada” it’s on! Last week he went to play outside (one of few days that it didn’t rain on the break) and got out his little plastic T-ball set. He put that ball on the T, showed me where he threw the bat over the fence. (I had to go get it –hoping that Julius – the Doberman dog – wasn’t outside). Mason grabbed that bat and swung at the ball and hit it and it went flying 25 feet!! Now I’ll take you back to last summer – the last time he played with it. We kept showing him how to hit it properly, and he would practice swing with us many times. Then when he’d go to hit it, it was a vertical thump on top of the ball!!! Every single time!! So this was a HUGE surprise to me to see him hit it with great accuracy and hard – and properly!! Then he did it over and over! I was running to keep from being hit, that would have hurt!
His “printing” has improved a lot too. He used to scribble big wild scribbles all over the page. Now he takes his pencil and does short strokes like he’s trying to write! All the while he’s naming off various letters of the alphabet at random.
Mason is repeating words we say with great enthusiasm. He is also willing to be taught to repeat after us. It used to be so random, now it’s daily. We have also noticed that he is starting to become aware of his “inside voice”. He’s never had that before. In fact since surgery it’s gotten louder. And he has a “bold” voice to begin with. His little boy cousin in Winnipeg apparently has the same one!!
Here are some ideas to help you pray for us:
Ø Patience for Mommy and Daddy, as Mason tends to behave the worst with us. He gets very strong willed and says “ME” a lot, wanting to have his own way. Very much in that two year old stage, but 65 pounds. I took him to the pet store to get cat food yesterday. Usually he likes it, but this time I ended up having to peel him off the floor, while he’s screaming, grab him in the “crisis management hold”, and drag him out to the car while EVERYBODY is watching. Not that that bothers me too much. Thankfully autism is getting so well known, most people assume that is what he has once they clue in that this boy isn’t as typical as he looks! But I sure am grateful that we can use the handicap parking near the doors! This is all part of the developmental process, and he has to go through it – so we’re thankful for that, but his size and volume add a … let’s say … ‘challenge’?!?!
Ø Mason’s seizures have been increasing a bit over the last month. Normally they seem to happen mostly at night or upon waking. Lately we’ve been seeing more at supper time. They are all still VERY mild compared to before surgery, but we need to keep them at bay. We haven’t increased med in about 2 years, and he’s grown and gained weight in that time, so the concentration is getting lower in his body. So I hope it’s just a matter of having the meds catch up to his weight. We started a small increase this week, and may go up a bit more next week. The neurologist, via the nurse, said he is not on high doses now, so we have plenty of room to increase meds if needed.
PRAYER UPDATE
Daryl’s Aunt ~ I mentioned her in my last e-mail. She has had an immune disorder for many years, which had been in remission for quite some time, although it left her unable to hear. Well that returned a while back, her Cochlear hearing implant stopped functioning, then she got Bells Palsy (partial paralysis on one side of her face??), shingles in one eye (is now blind in that eye), then got an infection in the other eye (nearly unable to see). Last week the doctors informed them that she now has Leukemia. And there is no treatment for the type she has. She will be turning 60 this weekend. As I mentioned last time, she has been an amazing encourager to me over these years of what we’ve gone through with Mason. PLEASE, please take a moment to pray for her and her family. Husband, two daughters and their families. (grandchild #5 on the way)
My former neighbor’s daughter ~ from where I grew up ~ I mentioned her as well in my last e-mail ~ Little 10 year old Cailyn was diagnosed with cancer a few weeks ago. They have now determined that it’s stage 3 (out of 4). The doctors feel it’s still treatable, but very aggressive treatment and will go on for many months. They had to insert some kind of “line” to give her the chemo. Normally it’s not a difficult procedure, but they had trouble with her and it took 3 ½ hours. And Cailyn screamed that whole time. Because she had post-surgery trouble the week before, they couldn’t sedate her. She seems to have fallen into deep depression as well. Her Grandpa died of cancer last year. So she is a very scared little girl. This really hits me as Sydney is 10, and I can’t imagine her going through something like this.
So thank you for taking a minute or two to pray. I know there are so many people with big trials in their lives and much to deal with. I would also be honored to hear your prayer requests as you “send for help.” Psalm 121:1-3 says: “I look up to the mountains—does my help come from there? My help comes from the Lord, who made heaven and earth! He will not let you stumble; the one who watches over you will not slumber.” (NLT)
Shirley

2007-03-04T23:35:00.000-08:00

Hello Everyone!

Well it's been nearly six months since I filled you in out the latest with Mason. He just continues to amaze us all the time. Comprehension levels keep going up and he's been putting two word phrases more frequently. So much of it is baby steps, but we notice every detail of progress. We just take for granted that the girls continue to progress that we don't notice the details as closely.

Christmas was a blast! NOT! The neat thing was that Mason understood what the gifts were about! In the past we would let him play with his gift beforehand so that he could get excited when he recognized it when he opened it. All the excitement though, increased his seizures a bit, and made him VERY incorrigible!!! Cranky, uncooperative - stressful. All of it was progress, but difficult. That first Monday back to school was Christmas Vacation to me!!! Since then he's been doing a lot better in the behavior department.

I wanted to tell you a bunch of 'Mason stories' today, but I'm kinda thick with a head cold. Got it from Mason! He's a kid that next-to-never gets sick. But last week he did catch a cold and on Tuesday afternoon the fever came on. Then it triggered a status (seizure that doesn't stop) seizure . The seizure ended up lasting 3 hours that night. In him it was mostly staring off with watery eyes and a bit of eye rolling. Status increases body temp, so they feed off each other and that's when we need extra intervention. (The last time he had a fever, nearly 2 years ago, we needed IV fluids to get the temp down when the Tylenol didn't help at all.) It was a hard decision to make, because Mason didn't look like he was having a seizure. I knew the signs, so I had to explain over and over to the ambulance guys, nurses and doctor. I felt so sad for him because he was scared of the ambulance, then of the hospital. Because of his greatly increased level of awareness since surgery, he now gets scared, knows he's scared, and was saying "cared" all the way in. :-( Yet it was really neat to see him able to express his emotions! Bittersweet.

This time Advil worked at the hospital - they give a higher dose than we normally do at home. 15-20 minutes later I saw the "seizure look" on his face just go away. I touched his forehead and it was cool. No IV was needed!!!! That's a whole event that takes 4 people to get done. I called the ambulance around 7:30 and I called Daryl to pick us up at 8:40. Fast!!! There were a couple of people who knew and prayed. :-) I kept sane!!! And Mason was pretty good after a while at the hospital.

What I didn't expect was tears near the surface (me). It was a big flashback to what life used to be like on a daily basis. Not the hospital part, but the ongoing crisis or near-crisis. Always being on edge, watching. Emotions having to be set aside regularly to be able to function to help my baby. How amazing the last year and a half has been to not be dealing with that all the time!!!!

We also now have the Special Needs Bus come to our door!!!! It picks up Mason and Sydney every morning, and drops them off!! I'd been trying to get that for over two years! It's very exciting for Mason and much less stressful for me!

Well, I should try to get to bed earlier than usual today. Get over this cold........

www.masonm.blogspot.com

I also want to say thanks for praying for the people in trouble that I e-mailed about recently.
- Malcolm, my cousin's husband is at home and on the mend. (serious flesh-eating disease) He is able to walk, and they are doing skin grafts to fix that leg which was eaten away. He has been quite overwhelmed that you ( and a couple of other prayer groups) would pray for him!
- Daryl's aunt had surgery for shingles in her eye, but is still at risk to get that in her other eye as well as several other medical conditions flaring up, keeping her in the hospital.

New prayer request:
- I just have to ask this because my heart breaks for this family. The mom was a very close friend to my sister, as well as being our neighbors, growing up - small community - they still keep in touch:

Cailyn just turned 10 years old on Feb. 24.
Friday, Feb 23 Cailyn had a severe stomach ache so they took her to the Hospital. It was discovered that there was a large mass in her abdomen. Surgery was done on Wednesday when the larger than a grapefruit tumor was removed as well as one ovary. The one ovary was completely infected and the tumor was sucked on to a number of different organs but had apparently not infected them. It was also discovered that the tumor had ruptured as well, spilling tumor cells all over the inside of her abdomen. This happened probably at the time of the severe stomach pain the previous Friday or possibly even at the onset of surgery. Not all of the pathology reports are back but yes, this is cancer. It is a relatively rare one called germ cell cancer. Generally this is a very treatable type of cancer although the size of the tumor, the rupturing of the tumor, and even what the final lab tests determine may make it a bigger challenge. Starting tomorrow (Monday) they will be doing tests to determine if the cancer is anywhere else particularly the lungs and bones as that is what this cancer sometimes goes. They meet with the doctors again on Friday and the plan is to start chemo on the following Monday. She will be staying in the hospital for the first 3 weeks of treatment to keep an eye on her as well as help manage pain and nausea.

As for how she is doing now, she did great following the surgery and there was talk of letting her out of the hospital for a few days. That changed on Saturday when she ended up with a high fever and vomiting. Saturday was a rough day for her.

The family will be getting a family picture taken this week. After that, sometime on the weekend, they plan on buzz cutting her hair. They were told that is a lot less traumatic than having big chunks of it fall off and that will probably happen within the first 2-3 days of the start of the chemo.

Shirley

2 Corinthians 1:3,4 Message: All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.

One year after Surgery!

2006-09-24T21:29:00.000-07:00

September 15, 2006

Well, dear friends and family, and prayer partners, I think it’s about time to send out another update on Mason! It is now September and we are nearing a year since he had brain surgery. It has been the most amazing, miraculous year in our lives! A year ago at this time, Mason was wearing a helmet with a face guard day and night for the volume of seizures he was having as well as the severity of each one. He had also plateaued at a 12 - 18 month level developmentally for exactly 5 years.

Last year around this time I wrote:
“Ephesians 3:20, 21 has been popping into my head a lot lately: NIV20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! AmenAmplified Version:20 Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]--21 To Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it).

I’m crying right now as I read these words. Holy words, a gift from God. Did I really expect more than we could hope for? Yes I did. Did I expect as much as we have received? No, there is no possible way that we could have even begun to comprehend what we have seen and experienced this past year. infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams I need no other words than these, because I really cannot begin to explain this past year in a letter like this.

This summer we have seen Mason learn new things on a daily basis. New words, new concepts, comprehension, behaviors, emotions. He is developing in all areas of his life! He’s gone from “burping the alphabet” at the beginning of summer to being able to sing along to the alphabet song and actually singing some of the letters randomly throughout the song!!! (click on www.dropshots.com/shirleyann to watch the former ABC song!)

Mason answers questions knowingly much more often and so clearly. There are more and more words that he is able to say, even putting together the occasional 2 or 3 word sentence. He has also learned to count to 3 in the last two weeks! He recognizes a couple of letters, but seems to like R, and will point at it and say it at random.

Mason wants to do everything himself lately. “Me” is a word he is saying more often all the time. For example, he insists on poking the straw into his juice box himself. It’s a messy struggle, but he does it! Then he tries to wipe the spilled juice off his arm, while simultaneously spilling more. But he did it himself!! Pray for patience for me! One morning he wanted to help me make pancakes. I decided to let him stir, fully expecting to clean up a big mess later. Well, he did such a good job, stirring so gently, that no clean up was necessary! (click on www.dropshots.com/shirleyann to watch him)

We spent a lot of time at the trailer we own with my parents. It really was a lifesaver. Hotels, holidays, other people’s homes are just too difficult with him. He has further developed many 2-year-old behaviors and skills. Checking everything out, going where he wants, climbing, etc. These are all things he has always done, but we could always distract him - the good thing about a very short attention span. Well, now that he has a much longer attention span, he can also maintain his desire to attend to what he wants to do! And, he’s a big boy, get the drift? Well he loved going to the trailer and make “were” (his word for ‘fire’), tear and crumple up paper for the fire. He did so well there, lots of swimming and playing in the new sandbox grandpa built. He also watched an entire 33 minute kids video for the first time in his life two weeks ago! He’s never watched more than 30 seconds of TV unless we held him down on our laps for part of a “family movie”!

There is so much more to tell, and I will in upcoming updates. But for right now we would like to invite you to give glory with us to Him who did immeasurably more than all we asked or imagined, according to His power that is at work within us.

We want invite you to glorify God in our home with us as we have an Open House of Thankfulness and Celebration on Friday, September 29 from 6 to 9 pm. (One year and two days after surgery) Join us for the whole time, or drop in to say “hello” (one of Mason’s favorite words while on a walk!). We’ll have some snackies.

This invitaion is open to those of you receiving this e-mail as well as those you share it with. I know that there are so many of you that share Mason’s story with others, which is fabulous. (this is a really good excuse to meet Mason in person then!)

Hoping to see you at the open house!!

End of June

2006-06-18T23:30:00.000-07:00

Hello

A few weeks ago, I let you know about our new adventures with “Jello Boy”. It’s been a very challenging time, but look! We’re surviving!!! The tough part has been remaining consistent in our follow through in what we say to Mason and expect of him. Gradually he is cooperating a little more again . . . some of the time. Here are a few big highlights in the last week or two:

Tonight is the fourth evening in a row that Mason has gone to sleep on his own. Due to the anxiety he’s had since surgery, he would get quite hysterical if he was left alone in his room. We’ve been tucking him in and leaving the room with his door open. He can hear us, and we say something to him occasionally to reassure him we’re still here. Before surgery, I always felt that even if it had been a seizure/behavior day from ____, at least he went to bed so easy. I have now been reminded how that changes the whole dynamics of the rest of the evening!! It’s much more relaxing again.
A few nights ago he slept through the WHOLE NIGHT!
Last week Mason said his first 3 word sentence! Ma ree boon. (there were distinct thoughtful pauses between each word) Mommy read Goodnight Moon. His favorite book. He loves books!!!
He has started speech therapy, and he is doing soooo well. His second time there, he would not get out of the car. Finally, I hauled him out, and when we got closer to the door, I told him to ring the doorbell, knowing that it would get him to the door. He pressed that button, yelled, ”Awdone! (all done)” and he zipped around and RAN to the car.”
Sydney played “The Sound of Music” at her piano recital without a single mistake. She started taking lessons in February this year. She had to learn 10 different cords – including minors, and flats. She also won an award from her teacher for “Most Promising Student” That, together with a few other good things happening in school has been amazing in boosting her self esteem in recent months. It had been declining prior to that, due in part to a false perception of herself!
Asia wrote and recorded a song and has a CD! Although getting her to practice her electric guitar is difficult at times, she too, has musical talent. Next year she also wants to take drum lessons. I think we may need to double up the door to the bonus room upstairs!!

Only two weeks of school left. I am not as nervous about this summer as last year. Mason is much easier behavior-wise, and the worries over the seizures and all that entailed are gone. (helmet, injuries, seizures that would go on for hours, etc) It’s good for me to check back on the blog to last year to be reminded how good it is now. Having some mild seizures at night, occasionally extra mild ones during the day is a picnic.

We co-own a trailer with my parents (Marge and Dick) an hour across the border since mid-last summer. It has become a favorite vacation hotspot for us. It’s an oldie, with a sunroom add-on, sitting on a large gravel lot, backing onto green-belt, in a complex with a great swimming pool. It’s easy to bring Mason there, he loves digging in the gravel, campfires, swimming (at least he did last year), and going for walks to the play ground. I find he gets bored in on place too long, so we’ll be sending a few days there, a few days home and go back and forth like that all summer. The girls love biking through the (security gated) campground, have made friends with a really nice Christian family two spots over, and we have the friends that “introduced” us to Whatcom Meadows last year, very nearby. Hotels are extremely difficult for Mason, so this is the best option for our family as a whole. The kids all love roasting hotdogs and marshmallows nearly every night we’re down here. I let Mason roast one (with my help sort of) last time. Flambé. When I wouldn’t let him do more, he went over to the table, took a couple of mm’s out of the bag and tossed them straight into the fire! Skip the stick!

Well, it’s the end of Father’s Day. Daryl had a nice relaxing day today, well deserved!

G’night

Still Moving Forward!

2006-05-31T23:14:00.000-07:00

Well, things are continuing on the upswing in Mason’s life, in spite of a slight increase in seizures and I emphasize slight! They are still less intense than they have ever been even at their weakest.

Every week we see new things. In the last few weeks we have seen a dramatic increase in speech, in fact, non stop. Mason is trying to say everything we say, lots of repitition, and communication. Nearly all the words he says are partial most often saying the first part of the word. He has had one session with a speech therapist, and we’ll start up weekly once the paperwork for funding comes through.

Mason still wakes 1 – 3 times each night because of a seizure, althought very occasionally he will sleep until 4 or 6 am. Daryl and I take turns sleeping with him for the remainder of the night after he wakes up, so those are not restful nights sleeping with Mason. Before the surgery he never had a problem going to sleep on his own. But after surgery he became so much more aware that fear and anxiety set in. His imagination must also be increasing, because he seems to have a bad dream occasionally. He wakes up crying differently.

This week we have been catapulted into the “terrible twos”. We’ve been there a few times over the years, but Mason was always easy to distract. Now his general attention span is much longer, and so is his will to do as he pleases. Have you ever tried to BBQ jello? Yeah, doesn’t work, but that’s easier to do than to get Mason to cooperate with us now. A few months ago I mentioned that “time out” is the best thing that has happened here. This week that went out the window. At least two year olds are easy to pick up and handle. Not so with a seven year old weighing fifty-five pounds. Developmentally this is fantastic!! In the past it would last for a little while, then he’d regress again. This time I believe it will continue. . . . for a longgggggg time. We’ll make it through, knowing that good will come of it! J (God, You promised!!)

Mason is off nitrazepam!!!! Yep, he was irritable and moody coming off, but nothing we couldn’t handle. Thanks so very much for your prayers!!

E-mail is such a neat thing! I know we are covered by so many of you in prayer. And in reverse, we get the opportunity to pray for you. Many thanks go to God for you, and we feel privileged to pray for you when you send an e-mail, whether it’s a quick hello, or you too are in need of prayer.

Galatians 6:2 (NLT) Says:
Share each other's troubles and problems, and in this way obey the law of Christ.

So thank you for obeying the law of Christ

and giving us the opportunity to do so as well.

First EEG Post-Surgery

2006-04-21T00:47:00.000-07:00

Well, after torturing the boy by keeping him up until nearly midnight and waking him at 5 am, Mason had his first post-surgery EEG. Sleep deprivation is necessary to make sure he falls asleep during the test. It can also trigger more seizures. The test involves wrapping Mason up tight in a sheet, then wrapping two large Velcro straps around him to keep him from getting away. The technician was (thankfully!) very quick in applying the 20+ leads (wires from the computer with little circles at the end stuck on with a special easy to remove glue) to his head. He cried most of the time, mostly from the restraint and not knowing what was going on. Otherwise it’s not painful or even very uncomfortable. Within 5 minutes of putting on the leads, he fell asleep. I didn’t notice any seizures. After 20 minutes he was woken followed by extremely bright flashing lights in his eyes . . . . poor little grumpy bear.

A few hours later we met with the doctor. She said that there was a lot of improvement on his EEG. On both sides of Mason’s brain. She also said that when they had suggested this surgery to us, they had hoped to stop only one type of seizure, the Tonic Drops. He was definitely exceeding their expectations. Because the seizures start on his left side, I had been hoping that there would be some improvement on the right side of his brain. So the improvement on both sides is really exciting! The doctor did say that she saw several seizures too small to be noticible aside from an EEG.

We have also started reducing one of his medications, Nitrazepam (same family as Valium). The last time he went off, he went into severe withdrawal, so you can really pray for this little boy over the next few weeks. None of the other meds have done this. His symptoms included being very cranky, screaming a lot for no reason, biting everything, including his toys, clothes, me and himself. I’m sure there were some others that I’ve forgotten, since it was nearly two years ago. I put him back on it at that time and have tried coming off more slowly a few times since then, but it’s been tough.

Update on Caden (I mentioned him last update). He is recovering at home getting over some side effects of the surgery – loss of speech for a few days and short-term paralysis on one side of his body. He is still having pain and unsteady walking. I’ll let you know more in the future. Thanks for your prayers for him! Please think of him as well when you pray for Mason. I just find that since we’ve gone through all this with Mason, my heart goes out to other families that have a child with such an uncontrollable seizure disorder. It’s so easy to take Asia and Sydney’s health and development for granted. Although I do that much less than I used to!

We have always kept within a couple of steps of Mason, but with his great increase in development and behavior, we are letting him wander and play farther from our reach. That seems to be resulting in more injuries. It’s actually a good thing, because it’s the normal development process. Active little boys get into stuff and get hurt. I’ve had a couple of boys from Mason’s grade one class over to play. Although I’ve been told how active they can be, I’m still not used to it when there is more than one extra boy here. Aside from minor bruises, Mason has had a couple of biggies. Last week he did something to his thumb and pulled his nail off ¾ of the way. We spent a couple of hours in emergency. It went quick, probably helped along by his nearly non-stop screaming, although the moment I told him we were going home, he stopped. The doctor had to remove the whole thing. I have no clue what he did – I don’t watch him as closely as I used to, there was no blood trail, and he can't tell me. ( I used to never take my eyes or ears off him) He spent a week with a huge bandage on his thumb holding it high, being extremely careful, but never cried after we left the hospital.

The other day we went to the playground near our house where Mason now enjoys playing on the equipment. Although we watch him, we can sit on the bench now without fear of him running away onto the road. Well, a couple pushing their cat in a cat-stroller distracted Daryl and me. Sydney wanted me to talk to them and ask about it and get a closer look. We were within 10 feet of Mason when he went head first off a 4 ½ foot high section, then smashed his chin against a metal part. He has a lot of bruising under his chin, bit a huge piece of the inside of his cheek and has a big blue bruise on the inside of his lip. There was a lot of blood, but thankfully mouth injuries stop bleeding pretty quickly. By the time we walked home (Mason in the stroller) he had stopped crying, and later that evening he ate an apple and some little hard candies!! Hasn’t cried since. Along with a high pain tolerance, he doesn’t seem to have the ongoing emotional response (self pity) to injuries like most of us. After all that, he had to be sleep deprived for the EEG the following day!

It’s tough seeing him go through these injuries, but there’s also a very positive side to it as he is becoming a little more like other boys! Hopefully he’s learning to be careful as well!

I am so very thankful that you all let me tell you about what is going on with Mason. (especially when I get long-winded like this) Although he still takes up much of our time, I am able to focus on Asia and Sydney a bit more these days. I am on a committee that is planning an eight-week session of a sibling support workshop here in Abbotsford. Personally I have no clue what to do, but am willing to learn! It’s with MCC supportive care services, the Fraser Valley Child Development Center, a couple of social workers, and parents. Our current focus is on fundraising to be able to start up in September ’06 and again in January ‘07. Professional counselors will be involved, which is where most of the costs are. This is something vitally important to families of children with Special Needs and/or Chronic conditions. The siblings are the ones most easily left out and will suffer for it (and grow from it) in the long term. Please pray that God will bless this endeavor greatly. That the finances will be poured in with ease, and the details will work out without a glitch. We have seen Him do mighty things already in the life of Mason and our family! He’s not finished yet!

Shirley