Short medical update

So I guess you want to know how Emma's doing, aside from the holiday hoodoo.  I'll try to make it short, because there will be more to follow up with next week.

Emma has had two sleep studies recently.  The first one revealed that Emma's sleep apnea has actually gotten worse.  She's not actually stopping breathing altogther, but her body's ability to regulate her breathing pattern and take deep enough breaths has gotten worse.  The second study allowed us to get a readjustment on her bipap machine settings since she has gotten older.

She has her dreaded annual MRI this Wednesday the 9th.  This one procedure requires 4 appointments: (1) well-check clearance from Dr. Troup because Emma has to be completely sedated and intubated; (2) pre-op since Emma's going under anesthesia; (3) the MRI itself; and (4) MRI follow-up.  The whole ordeal itself is pretty awful - handing Emma over to the doctors crying, holding her down on the table while they shove a gas mask on her for 60 seconds, and then trying to get her to calm down during recovery.  It's heart-wrenching.  The only (and I mean ONLY) comfort I get in leaving her for the procedure is being allowed to leave her beloved Bun (her worn-out stuffed bunny) with her so that she wakes up with him, but Bun can only accomplish so much.

This MRI will tell Dr. Troup if the compression of her brain into her neck has gotten worse, as well as if the very large cyst in her spinal cord has gotten worse/better/same.  Emma's pediatric sleep specialist believes that Emma's sleep apnea is completely caused by the Chiari malformation (or compression of her brain), but the issue is that Dr. Troup is pretty much convinced that decompression of the brain will not resolve the sleep apnea.  In some kids, it's a given that decompression will resolve it - not so with Emma.  But that's for the two of them to discuss.  And Dr. Troup wins, basically.  Who knows - maybe the MRI will tell him something totally different....but I doubt it will because Emma's other symptoms that he's most concerned about have either not changed or improved.

The symptoms of worsening compression are increased problems breathing and increased frequency and severity of choking.  None of these things are happening.  In fact, the choking has continued to get better.  The main symptom of the spinal cord cyst (called a syrinx) is decreased ability to use her fingers, hands, and arms.  Believe me, that's not happening.  She is testing right at normal for her age when it comes to these types of activities.

Emma is on her knees all the time now playing, pulling up on everything.  She crawls on her hands and knees all the time, and she's making great progress with learning to walk with a walker.  She's actually very behind the SB kids who CAN walk, but some kids with SB can't walk at all....so she's in kind of an in-between place in this regard.  However, she loves to walk at therapy and literally NOTHING will inhibit her ability to walk more than an unwillingness to - not a problem here :)

We find out the results of the MRI next Tuesday, so I'll have more info then!