Tuesday, November 3, 2015

Quiet Blog, Quiet Life

Honestly, I have been slack on blogging here but have no huge updates.  I'll try to hit the main things:

  1. Mason is in good health generally.  He's happy, growing, learning, and so full of personality.
  2. He still has occasional headaches.  We wonder if they are related to his bifocals.  Neurosurgery checked him over and the shunt and everything else looks fine.
  3. Bowel management (enemas) is going great.  We've moved his enema to afternoons instead of evenings and love having our evenings free for family time and relaxing.  He is generally cleaned out well with the balloon enema and has no accidents.  It takes us about 50 minutes from starting the fluid to getting off the toilet.  He does still require miralax daily for the enemas to be successful (keeping poop soft enough that it will come out). 
  4. Feet/legs and bracing - This is one area things are not working in.  He outgrew the standing braces (HKAFOs) but at the same time his right foot has contracted and so his shorter braces (AFO, begin just under the knee) don't fit either.  And the bracing doc can't fix braces enough for that, we're needing to see his orthopedic surgeon and possibly looking at another surgery to release that foot tendon again.  As I'm having baby #9 this week we've chosen to wait a bit on pursuing the appointments that will lead to that decision, we'll revisit it come January and are working on stretches to see if we can change things in a good direction with the foot instead (which is what his surgeon prefers we try first). 
  5. Mason's osteoporosis has improved!  We had his yearly checkup with the nephrologist and a bone density scan and while his numbers are not yet normal, they are better.  We will continue the IV infusions of Zolodronic Acid, spacing out to every 4 months instead of every 3 for the next year. 
  6. Large Motor Development - Mason is at a pretty stable place right now.  He can climb into and out of his wheelchair, climb a flight of stairs, get into and out of chairs/on and off furniture, and shows large amounts of strength in upper body.  His balance when sitting is decent, and we don't expect it to improve beyond what he can already do.  He generally can do anything he really wants to do, whether using his wheelchair or not, and if he can't figure out a way he is not shy about telling us what he wants to do and insisting we pick him up/carry him/ help him. 
I think that's it!  He currently loves pirates (Jake and the Neverland Pirates, Peter Pan, and pirates in general), is beginning to enjoy building with Legos, still loves playdoh, and talks up a storm.  He sleeps through the night in his toddler bed (we cath him at midnight but he sleeps through it).  He does not like loud noises (very normal for someone with hydrocephalus and a shunt) but he does like music and dancing if the music isn't too loud.  He does not like to sing.  He does like playing instruments (we have piano and guitar) and is asking for drums for Christmas.  We'll see...

No comments:

Post a Comment

Thanks for commenting!

Note: Only a member of this blog may post a comment.