Bucketful of Miracles

There are so many cool things happening with Mason!

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

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

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

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

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

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

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

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

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

SpOnGeBoB and MaSoN

cousin-uncle Christian wrote this just for Mason!

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

Olympic Moment

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

Way to go Sydney!

~Everlasting God ~ Almighty God~

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

Here goes....

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

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

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

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

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

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

Everything is for His glory.

And the doctor said...

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

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

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

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

Thanks again for your prayers and support! :-)

Nap time!!!

Going Home!!!

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

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

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

Bedtime day 1

The end of the first day.

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

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

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

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

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

my turn for a few zzzz's

difficult morning

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

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

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

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

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

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

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

a little anxious

...just a little....

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

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

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

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

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

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

hmmmm feeling a little lighter.....

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

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

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

Hey everyone.

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

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

This will probably be our most difficult hospital visit yet.

the needs:

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

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

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

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