Apr 22, 2011

I belong to a group on Facebook called United by Spina Bifida. There are all kinds of people on there whom have some sort of connection with someone born with SB.  I'm not really active on it, but I like to have a look when I log on to see if there is something that pertains to me. Earlier this week there was a posting from another Mom who had struggled with the diagnosis of her child and wondered if it had affected anyone elses faith like it did hers. While the posting made me think of how my faith was affected, that's not what stood out for me...a grandmother posted a reply talking about Jesus healing the blind man.(John 9:1-12) In the story his disciples ask Jesus who had sinned, him or his parents. Jesus answered them by saying neither had sinned, but he was born this way that the work of God might be displayed in his life.

It was like a light bulb went off.
Let me tell you, I never once struggled with my faith in thinking I no longer wanted to have a relationship with Jesus...but I certainly asked why, I certainly wished for another way, I certainly prayed for a full healing, but my faith at the core did not shake.

But for the first time I felt like it wasn't my fault. I didn't even realize I had put that much blame on myself until it was gone. I would love for Zachary to have a healing-the-blind-man moment in his life some day, but as far as I'm concerned the glory of God has never ceased to show in his life. From the very beginning we have had miracle after miracle and I forever want people to know what an Awesome God I serve. 

Apr 20, 2011

Hate is a strong word, one that we encourage our two older boys not too use, but I am going to use a "bad" word and say Zachary HATES his afo's :(

I was all excited in anticipation with this day. I couldn't wait to see the potential the afo's would give Zachary. That he would rock them out and surely take his first steps (well I wasn't that delusional) but I thought he would see a freedom in how they helped him stand.

That was not the case. If you have ever met my sweet boy, he is just that...sweet. compliant, happy and non fussy. Needless to say we did not have any of those characteristics yesterday. He was sad the moment they went on. He seem to be paralyzed with fear at the possibility that he could still move his feet in a forward motion. We walked up and down the hall a couple times, which he did like, but stared at those things on his legs the whole time. His sad little whimper seeming to ask me what I was doing to him, was more than I thought I was going to have to handle that day.
They fit perfectly and are decked out in Maple Leafs, Colts and Blue Jays logos (yes Ryan was given the go ahead to pick whatever he liked, I truly didn't care)

We got home and I put them back on him again and that sad little face just broke my heart.
Now, I know how amazing he his doing. Not all SB families can write about the same story I am. And all the sad faces would not make me change his progress for a second, but it still broke my heart none the less.
He doesn't even want to crawl, he just sits there looking sad.
It made me jaded about the whole thing, and that is my biggest prayer, that I don't ever feel that way. Sure I can have days of this sucks and I wish, but I don't want it to cloud my actual outlook on life. I hurt for him, that he thought I was doing something terrible to him.

I know over time he will get used to them and I'm not in the least bit concerned that he has them in the first place, but yesterday was plain old hard.

Showing off the new gear

The gear
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The ONLY smile I got out of him...pretended I was playing peek-a-boo

Hurry up and wait...

Sad face looking out the window

Apr 8, 2011

I can't believe how long it's been since I've posted something!!! Life has been busy...3 boys (enough said lol), back to work, sickness and life in general.
There is so much I could cover, but I think the biggest right now is Zachary's visit to Spina Bifida clinic last week. This is our second clinic day since he was born, the first time we went he was 2 months old. It was interesting being back there after having a whole year under our belt. We were to see the paediatric nurse, orthopaedic surgeon, urology, and physio therapy, as well as Dr Church (my favourite).
First up was the nurse. I had a couple of questions for her as Zachary had an infection on his toe and seemed to have what I thought was a pressure sore on his bottom. Sadly I have no idea how his toe ended up like this (yes I check over his feet everyday), and he was already on antibiotics. She agreed it the sore on his bum is a pressure sore and would have ortho look at it. His tail bone doesn't curve under, it points directly straight down like a dagger. I was a little irritated as this is something I've brought up before, because I was sure this was going to happen. It only seemed natural that the bone would eventually cause problems.
Anyways, from there we saw physio and they were amazed by Zachary (love hearing that!). He really is doing fabulous. :) Kim asked about next steps and I was hoping we could get the ball rolling on AFO's (ankle foot orthodics). She was happy with that and wanted to see if we could even be casted for the that day.
I just re-read some of my post and I apologize for the choppiness...I have had to keep coming back to finish the post, so of course my thoughts are scrambled each time...lol. But since it's been so long since my last post, I'm going to leave it as is and just roll with it :)...so bare with me.

Ortho brought in some foam for Zachary to sit on to relieve his sore. He has quite the booty now, from having to stuff it in his pants. Although I have seen a difference in the sore, so that's promising. I'm not too sure what other steps they will take going forward. I can't see him having to walk around with foam down his pants the rest of his life. While with ortho, physio came back to let us know we could go up to orthotics when we were through, so Zachary could be casted for the AFO's! I felt like we were getting somewhere.  After only seeing physio twice since November, I felt left in limbo. Not sure if I was doing enough and annoyed that it seemed Zachary was at the bottom of everyone's list.  We go back April 19th to pick them up, I can't wait to see what sort of potential he has with them!
Urology was fine. We saw the same Dr that we see at Sick Kids. Ryan was able to ask all his questions regarding the future and what it all means for Zachary.

We also saw Dr Paige Church. I truly want to be her friend. I loved her last year and she was just a wonderful this year. She just has a way about her and she is so good with the parents. You feel in such good hands and she strives to look at the whole picture of your child.

So this has taken me ALL day to write and really I haven't left you with much.
But I am really looking forward to getting his AFO's (with blue jays, leafs and colts logos on them).
And we are pleased that spring might finally be here. :)