Day 1

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

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

(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.

1. 

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!

2.

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

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)

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?!?!?!?!?!

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

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....

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

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

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

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

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!

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!

Other stories:

Easter weekend - the kids and I spent a couple of nights down at the trailer. Our neighbors, there, were out as well. Their kids are the same ages as ours, so they hang out/play  together. Something very exciting occurred that weekend. As I sat around the fire at Adrienne and Luigi's trailer, Mason and Nick (their 12 year old son) played together. Kicking balls, finding sticks, etc. The really neat thing is that the two of them wandered off to our trailer and back and into the bush and generally were all over. And I just stayed at the fire enjoying the company of my friends!... without worrying about Mason! He's come along enough that we don't have to have him within constant sight! He can go off and play like any typical little boy!

We also had an Easter Egg hunt down there. What a hoot watching six kids looking for plastic eggs all over our campsites and in the bush! Three of those 45 plastic eggs are still waiting to be found! Us moms couldn't remember where we put them all!

Gate-Free!

We have also taken the gates off in our house! First time living without gates! That means Mason can go upstairs any time he wants. Although in reality, he wants to go up less often than when the gate on the stairs was on. 'The grass is greener....." When he does go upstairs, he goes on the computer or off to play air-hockey. He knows he is not to go into the girls' bedrooms, but he will if he's chasing one of the cats! 

Gates off also means he can now go into the kitchen any time he wants. I've put a little flip-lock on the pantry door to keep him from scrounging for food. It only took him two days to figure out how to open it! He got a plastic cup to help him reach the lock and pop it open. He's a smart kid!

Imagine Ministries: (imagineministries.ca)

Mason LOVES going to church now! He loves his Imagine class and his caregivers. We now have 6 kids attending. Two that are integrated into their peer classes. :) More plans are  coming for Imagine!

May 2/3 weekend services at Northview. At the end of each service, there was a group of 25, or so, of us doing 'cardboard testimonies'. Click on weekends at northview.org, then messages to watch it online. I was up there. The first side of my cardboard, in the shape of a puzzle piece, said, "Our son, with medical and special needs"... turned the cardboard.... "IS created in God's Image". I tried to get Mason to go on with me on Saturday night, but we had to go past the drums and that was too loud for him. Daryl brought him Sunday morning to the last service. I watched Mason in the doorway as he clapped and cheered, along with everyone, as each person turned their cardboard. After we were finished and left the stage, I gave Mason the cardboard. (he thought it was his the night before). They were singing one last song and Mason wanted me to go back on stage. I thought he just wanted to go up to the front, as other people were going up with their mini puzzle pieces. We came back, then he decided he wanted to go up the center isle holding this big cardboard. He just stood there, watching. I was amazed, as he usually bolts from the main sanctuary. ( I could have tried to get him back, but he probably would have ended screaming a lot). Then when the service was over and almost everyone was gone, Mason decided to go onto the stage. He stood there with his cardboard watching the worship team pack up. He told me to sit in the front pew and watch. So, once again, I patiently waited. It was nice to see him comfortable in church! :)

Coming up:

May 26 appointment at Sunny Hill Hospital in Vancouver to assess Mason for Autism. His psychiatrist saw some signs of it. If Mason does get the Autism diagnosis, that will mean more funding and help for him. 

Purple Day

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

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

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 ....

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

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

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!

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