Spinning my wheels a little

Okay, so we had SB clinic today for Emma and I'm fighting the urge to come home and burst into tears!  I've really been looking forward to her appointment for a while, it seems like everything with her walking was riding on it and maybe today we would finally be getting her little feet some support.  She's been doing great and I'll admit sometimes I want more than I should with her.  She was born with Spina Bifida, am I expecting a speedy miracle or what??  Well yeah, I guess so!  Up to this point I've just been waiting thinking okay she'll either walk, or they'll go ahead with braces and it'll help give her strength so she can just do it!  She's been doing so good, really starting to stand for longer periods of time but I see that weakness for her and I just want to help fix it.  Isn't that what we moms do??  I just feel like we're at the same spot we were 4 months ago, but to a degree I understand the point the docs were making today.  Last time we were in clinic, Dr. A said "Okay, the next time I see you she'll definitely be walking"  and I thought wow, that would be so cool.  I'm sure deep down inside it was a promise to me and somehow it felt like a broken promise today.

No...there are no guarantees when it comes to this stuff and Emma is trying with everything she has but what if I'm not doing enough as her mom to help her?  I have to be her voice, I have to make sure they know exactly what's going on and how she's developing.  When it comes to SB, we've lucked out so far and maybe realizing that is part of the battle for me.  She doesn't have a shunt and I always wonder if we made the right decision or will her ventriculomegaly be something that will affect her later.  She's cathed, it's a pain sometimes, but it's helping her kidneys and it's keeps me going.  Her Arnold Chiari is not symptomatic and she definitely has movement in her legs!  The poop issue....hopefully we got a better plan today with starting sorbitol so we'll see.  From the beginning I've taken all this in and tried to make it better, for her, and for all of us. I want to wake up tomorrow and not think about SB...pretend there's no worry about the tiniest little thing out of the ordinary......just another baby thing and grin and enjoy my one year old, running up to me with a rock in her mouth, so eager to show me all the yummy dirt!  If it were only that easy right?        

Well, what we did learn at clinic today was that Emma's little feet like to pull upward and out and that is making it hard for her to walk and maintain that control when she takes steps.  By bracing her feet now, which the muscles are still supple, we would be slowing down her crawling and it's not for sure that it would speed up the process any.  Both the ortho and our physical medicine doc feel like she could benefit from braces but the questions is when...so here we are at the old "wait and see" game again.  Which is mainly why I feel frustrated...but taking a cue from something I saw at Barnes and Nobles tonight......"Keep Calm and Carry On"...sounds like a plan!