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. :)


  1. That is exciting!! We're in the process of getting Kingsley's first AFO's ordered as well. It sounds like he had a good clinic appointment, that's awesome!

  2. Exciting update! Sounds like a good appointment, got things going! I hate having no PT and feeling so unsure and stuck - glad you got some answers! Have you guys started at Grandview, or are you in limbo there too?

    I finally got to SB group again and missed you! There is another family from Oshawa who was there. I was hoping we might be able to make a little baby group (I heard there is another family in Bowmanville as well). I'm hoping to send an email out sometime this week or next.
    Oh - and while I'm here, I want to pick your brain about if you are doing a SWWR walk in June...