Thursday, June 25, 2009

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!!!!!!!!!!

Wednesday, June 24, 2009

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.

Monday, June 22, 2009

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



Friday, June 19, 2009

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".

Wednesday, June 17, 2009

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.

Tuesday, June 16, 2009

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.

Monday, June 15, 2009

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".....