Tuesday, October 9, 2012

Signs That He's Doing Really Well

Last week, Aaron won a contest
from Neotech.  Here are the goodies
they sent him.
Aaron is doing well, so well.  Two years ago, I wouldn't have believed this was possible.  Some signs that he's doing much better than was expected:
  • I found myself having to think to make sure I was giving out the right kid's birthday when I called about some of his supplies. (And his didn't roll off my tongue when calling about another kid!)
  • I had to go look at a calendar to try to remember when he was last seen, and by which doctor.
  • I don't respond to the first, or even second alarm anymore.  And if there's anyone else around, I often ask them to check on subsequent ones if I'm busy.
  • He's not the one that's woke me up in the night the last few times "mom" has been needed.
  • I haven't updated his medical history since mid-July (right before our trip).
  • When I went to update it today, I had to put in a few communications with doctors, no actual visits, and some feeding changes.  Oh, and a WHOLE LOT of therapy appointments.  It's telling that he hasn't been to the doctor, and he has been around for therapy.  
  • When he's out of his bed (so he can lie flat) he rolls over to his tummy on a regular basis.  He does get stuck because he doesn't have the muscle strength yet to push himself back with his arm and leg.  Kinda funny because it's the opposite of his siblings.  They used to roll from tummy to back and then lie there like turtles, waving arms and legs but not knowing how to go the other way.
  • The biggest change to his regimen has been the up and down and up again of his calories as we try to balance his weight gain with his height.
  • He's up to 2 1/2 hours, three times a day, off the ventilator!  YEA!!!!  This is a HUGE thing.  Most people think it's pretty amazing, and it is.  But the medical professionals, those who understand how 24/7 ventilation actually causes problems for the lungs, they are floored.  Because what he's doing is very rare indeed.  
There's a lot going on here in the next few weeks.  I'm getting everything together because we have our 6-month check-up at Primary's tomorrow with pulmonology, ENT, and special needs.  I'm hoping we see wound care team as well, because his g-tube sore is just not healing.  That sore has been there since May '11.  Yeah, over a year.  It doesn't bother him at all, but it really bothers me, especially when it decides to bleed.  We'll also touch base with the dietician, and may change his calories again, ugh.  

Another exciting development is that he's been approved for his special bed.  The bed will raise and lower at the head, knees, and feet.  It will also raise and lower as a whole component, making taking care of him much easier!  

I've been gearing up to fight for this one.  Many people have told me it takes months of appeals and so on to get this approved. Ours was approved on the first try.  I'm told it may be here before Halloween!  So glad to get what he needs.  This will be much safer for him when sleeping, and will let him move around a lot more when he's awake.  Somehow, he doesn't like trying to roll uphill in his crib.  As he moves more, he'll develop more muscle strength.  This will also translate into better health for him.  It just keeps looking brighter and brighter.

Anyway, I'm also scheduled for surgery on the 24th on my shoulder.  I'm trying to get everything done for him and also manage all the other kids appointments and activities as much as possible before then.   There are a lot of changes in the works for us.  I kinda figure I'll be able to sleep after the surgery when I can't do anything else.  I hope it works out that way...

“I believe that no concern of ours is too small or insignificant.  The Lord is in the details of our lives.”
                                                        President Thomas S. Monson

1 comment:

  1. This is all such good news, Rebekah. Sorry about your shoulder. Hope it goes well. You know, I'm pretty sure that we actually live fairly close by. I would love to do anything I could for you while you're recuperating.