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!           

The absent blogger...

Well I don't generally get on here and type too much but I've decided that it's probably the most therapeutic thing I could do these days.  Life gets so hectic sometimes and it's all I can do to take a minute for myself to read, let alone blog.  Things with Emma have been going great, more wonderful than I ever could have imagined they would ever be.  She is such a sweet and funny little person that is so curious about her world and everyone in it.  She giggles all the time and talks in these huge sentences and of course, not a one of us can translate a single thing, but we smile and say "Yep, what you said!"  She just smiles with that adorable grin full of teeth now and it melts me.  How on earth does she have Spina Bifida??  Somedays I ask myself that over and over.  She is just like Aaron and Madison were as babies.  She's silly, she is so full of life, she gets into everything she can and she likes to tell me when I don't do things correctly and she gives the most wonderful hugs and kisses....she's such a perfectly normal baby!  Sometimes the whole SB experience, the scary parts at least, are passing memories to me and I like it that way.  Then there are days when I see something that triggers an emotion and it's just as fresh as it was the day we found out. 
Tonight, actually, I had what we have started calling an "I hate SB" moment.  I had given Emma a bowl of oatmeal because lately she just hasn't been eating good, too interested in what's on the counter and or what everyone else is doing, so I decided she could try to feed herself (or make a huge mess!) and maybe have some fun.  Of course the bowl was dumped and the oatmeal was smeared in a nice layer all over her tray and it was definitely bath time.  I stripped her down and cathed her (our usual before bath routine) and got her in the tub.  She was having so much fun splashing and playing and her sister was making her laugh too so she was having a blast.  She was in there maybe 5 mins and I noticed a little poop in the water.  Her bowels haven't been doing too great lately, very inconsistent even with juice.  Not really a huge deal but it meant it was time to get out and as I lifted her up she looked at me like she was so bummed because mommy was ending the fun!  I don't know why, but I just thought to myself, this is the parts I hate.  The little things that grab you and it's not even a major deal, something I would have never thought of with my first two.  Then I think, it's just poop......s%!t happens right??  Things could be SO much worse and we are so blessed with how things have turned out for her.  Some days the big "Is she walking" questions gets to me, other days I just smile and say "Nope, she's working on it".  I worry about her bowel management, I worry about her hydro, but other days I just enjoy being her mom.
 
Over the past few weeks, I have been watching Drew help Emma with her standing and I've never seen so much joy in his face.  I love watching the two of them!  She giggles when you try to get her to stand and in doing so, she will fall and laughs the entire way down.  It's so hilarious but at the same time we're trying to keep her serious so she can really try (what are we thinking right??).  I know for myself, when it comes to her walking, I've never had any grand expectations.  Everyone else we know is convinced she'll be cruising by next week but I just like to watch her and I know eventually she'll get it.  I thought I'd be so heartbroken when she didn't walk by one but now I just want to make sure I'm doing everything I can on my end to help her get there.  She's very confident when she cruises the furniture and even holds our fingers but the minute you let go, she'll fall.  She's also turning her feet out and lot and dragging them sometimes, things that we'll definitely be talking about at her next SB clinic on Jan 28.  But for now, just listening to giggles while she tries out her legs is enough for me, I love to see her little determined face. 

Sometimes I just have to keep my worries quiet and remember....she's doing great....she's not giving up!  As I'm sure Aaron would remind me of a quote from the penguins of Madagascar right now....."Just smile and wave boys....smile and wave!"