A little bit of this, a little bit of that

Let's start with the good bit: Emma is getting her very own walker!!  She now slides down off the couch onto her feet, and she loves to stand up like that.  She randomly decides she wants to stand up and thinks it's such a thrill now that her balance is improving.  She still doesn't have enough hip, knee, and ankle stability or balance to be able to walk unassisted, but walking with her very own walker is much more than we ever thought she would be capable of.  She is doing amazing things at therapy, and no one ever expected she would accomplish so much.

Emma is finally getting to know the names of some of the kids in her preschool class.  She is a pretty independent player, so she likes other kids, but it's not totally necessary for other kids to be around for her to be happy.  She gives us canned answers about school now, though, sort of like a middle-schooler.  "Emma, how was school?"  "Good."  "What did you do?"  "Played."  "What did you play with?"  "Toys."  "What kinds of toys?"  "Toys."  So even though we don't get a lot of feedback about school, we know she loves it by how excited she gets on school mornings and by how easily she leaves us in the dust once she gets there.

Emma might turn into that kid who says that her favorite subject in school is recess.  She is on a different playground than she was on last year, and there is apparently a great hill on which she loves to climb.  She pretty much comes home looking like this every day:

 

 

And check out the AFO's.  That black spot on the bottom is a chunk of dried mud.

 



She doesn't really scrape her knees up, just gets good and dirty.

What else is our little darling doing these days...she LOVES to sing.  But really only if she knows the words to a song.  She's not one of those creative kids who makes up her songs...apple doesn't fall far from the tree.

Ok, so on to the bad bit.  Emma's scoliosis was about as bad last year as it is this year.  I don't want to go into how I found that out and why it was overlooked.  Argh.  So our next step NOW is two-fold: first, a back brace.  Emma had a cast done as a mold for the back brace, and this is another story I'd rather not go into because it was so horrifying.  Let's just say there was messy cast goop from her pelvis up to her chin all the way around her body, x-rays in that cast, and a saw that cut it off from her pelvis moving up to her face.  We will get that brace in a few weeks, and we are NOT looking forward to it.

The odds of a brace working to correct/prevent future damage from scoliosis are slim on children this young and this severe because it's so horribly uncomfortable.  You're supposed to wear it all the time, even though it inhibits movement (you know, cause we don't deal with that already) and it's really, really hot.  I expect that I will have to buy tops a size up to fit over the brace.  Emma's scoliosis is higher than most, so that is an even bigger risk of the brace NOT working.  We have a backup plan with a titanium rib that can be done in Columbia if the brace is a complete failure.  But the rib requires surgery every 6 months for adjustments.  However, it's the best thing going to surgically correct scoliosis right now.  We'll just wait and see how this brace does first.  We will have to periodically take off the brace (which is a PAIN) to check for pressure spots, even though she will have a skin tight Under Armour-type shirt underneath.  Here's what the brace will generally look like, but I have a feeling Emma's will be more "invasive" than this little girl's:

Second step: re-evaluate Emma's syrinx in her spinal cord.  The syrinx could cause the scoliosis, or the scoliosis could cause the syrinx.  Emma will have a full spine MRI the day before Thanksgiving so that Dr. Troup can take a look at everything that's going on with her brain and spinal cord to determine if draining the syrinx will be helpful.  He's been waiting on symptoms to appear for 2 years, and he has always been 50/50 about draining the syrinx in the first place.  I'm hoping he will just go ahead and drain it and get it over with.  But I'm no neurosurgeon, so I will follow his lead.

Ok, that's all the bad news I can handle giving you for now.  Let's leave on a positive note.  Emma LOVES to watch Daddy's team of old guys and the high school boys practice basketball at church.  I couldn't tear her away the first week of practice, and she gets really excited about fast breaks.  The second week of practice was a little easier for me to get her to leave, but a meltdown was very narrowly avoided.