Sunday, January 30, 2011

the next day.....

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

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:

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

Wednesday, August 18, 2010

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!

Sunday, July 18, 2010

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

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

Wednesday, April 14, 2010

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.

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.....

Tuesday, April 13, 2010

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!

Monday, April 12, 2010

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.

Friday, March 26, 2010