Make-A-Wish Vacation part 1

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?

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?

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

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

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

Pray for Jared

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

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

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

cousin-uncle Christian wrote this just for Mason!

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

Olympic Moment

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~

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...

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!!!

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

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

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

...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.....

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.

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?!?!

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

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

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