May 10, 2011

So I know, I know...I pretty much suck at blogging right now. I was hoping after a couple of weak blogs I would be able to get on track and really have a great and profound blog to come back with a bang...Don`t hold your breath, I have no Bang.
Life has taken over lately with a little bit of sadness and a lot of busyness.
I don`t want to dwell on the sadness part, but I will fill out in. I have felt tired and run down, no energy and defeated by how SB has changed my world. Now before you gasp and think how could I write such a thing, let me see if I can put my thoughts into words. I am not worried about what Zachary can or cannot do, I am not feeling overwhelmed by Dr`s appointments, I am not discouraged about having a perfect baby that now has a scar...but I am hating the fight that waits under my next breath.  I don`t feel sweet anymore. I feel I am researching and trying to advocate for Zachary, that it has taken away from how I want to be. I feel jaded.
All my worst fears when I found out about the adventure we were going on.
I`m just not myself.  It is getting better, which is why I can now blog about it. :)

Zachary had surgery last Wednesday, it was the second stage of a Urology surgery he had in September.  We waited a long time to get in for this surgery, it was originally supposed be done in February (that`s a whole other blog post lol). It was a long day, as is any day that your child is having surgery. We took the older boys too, as our sitter is getting ready to move and we just thought it would be better to bring them along. They were so good and had a chance to play in the siblings play room. Zachary did great as usual, I`m always amazed at how well he does after we`ve had to starve him.
The surgery was successful and hopefully we won`t see the OR for a long time.

He still does not enjoy his AFO`s. And emotionally it`s been hard for me too. I know he will get used to them and never know what it`s like not to have them, but for the time being, it`  I wish the professionals would have had some foresight. I wish he started with the AFO`s when he was 7 or 8 months old. That way he would have learned to do everything he is capable of doing with them already on. Rather than him fighting to be able to do all he can and then stick these things on him, that make him start all over again. It is truly heart breaking.  Right now it`s one of the first things I would tell parents of an SB child...if you know they are going to need them, get them used to them right away.

One of my favourite finds came from a fellow SB mama. I absolutely love these for over his AFO`s, they are called skidders. Essentially they are like socks but with a rubber bottom. They allow his braces to not feel so bulky but provide a good tread. At first I was really sad because I only found them online and the shipping was more than the shoe. After searching around I found them at Walmart for $10...cheaper than online. I love a good find :)

We are starting some physio sessions, and I`m really hoping they get him going somewhere. I don`t have complete faith in out therapist, but I am glad to be seeing someone.
My goal is to get him independent...whatever that means for him, in his own time.

I haven`t even uploaded any pictures recently...but I do have a couple that I haven`t put on here, even if they are outdated.


  1. So glad they are working out for him, and that is a steal!

  2. You have such adorable boys!
    It really sucks when SB gets you down. Let me know if you want to get together, even just coffee or something. But you aren't alone.

    I feel the same way about PT at Grandview. I am so not happy with them right now, and it really sucks when you don't have faith in the people that are supposed to help you!
    Hope you feel more yourself today!

  3. It is really, really hard sometimes to not become jaded, and to have grace, and to be sweet and loving when you feel like you have to fight all the time. But the good thing is that you don't want to be jaded--that's a good step. :) It's hardest when we feel like we deserve to feel that way.

    Anyway, have you looked into other braces? Does he need full AFO's? What about SMO's? Shoe inserts? I don't know what his needs are, but sometimes therapists and doctors jump straight to the AFO. If he's feeling too restricted, maybe it's too much bracing?