[tri-med] Keren's home from the hospital!

Hello all!

We're home!!!  Actually, we got home Wednesday afternoon and let me 
tell you it was the most wonderful homecoming I've ever experienced.  
It was just so nice to have Keren back with us, to not be at the beck 
and call of doctors and nurses, and to not have Keren connected by 
wires and IVs to monitors and machines!!!  We're settling back into the 
home routine very happily.

All aspects of the jaw distraction went well.  Overall the hospital 
stay was a good experience, despite the discomfort of room 
accommodations for parents....   We had wonderful nurses to work with, 
and Keren was able to get the pin arms (the ones in her mouth that 
stuck out so we could turn them and move her jaw out) removed before we 
came home.  The rest of the hardware will stay in about two months 
until her jaw is completely set, but that will require only an 
overnight for removal.  None of it shows--it's all internal.

It's been so strange looking at our little girl with her new jaw!!!  In 
some ways she looks so different.  We're getting used to it really 
quickly, though, and it's so great to see her breathing easily and 
keeping her oxygen saturation up even when sleeping.

Keren came home with the ng tube (nasal feeding tube) and so we're able 
to give the majority of her feedings through that.  She's still getting 
the hang of her new jaw structure, so to say the least she isn't 
getting very far on the bottle.   We'll be getting some instruction 
from occupational therapy as to how to strengthen her mouth muscles so 
she can get better at that.  Hopefully she won't get so used to using 
the tube that she won't try the bottle at all, 'cause we know she can 
do it and it will help her developmentally.  We're still going to go 
with a stomach g-tube which we can hopefully get at the same time the 
rest of her mouth stuff is removed.  We think we'll go ahead with a 
fundo, too, 'cause she's still spitting up a good bit due to 
reflux--and I'm so tired of always being careful that she's upright, 
upright, upright!!!!  She's getting to the point where she likes to lie 
on the floor and squirm and kick, but we have such small windows of 
"safe time" where she can do that....

Well, I think that's the scoop!  Keren's been doing well since she's 
been home (she seems much happier than she did at the hospital).  We're 
noticing more little developmental steps--more smiling, more batting at 
  toys and interaction.  It's fun to watch and exciting, and a neat 
answer to prayer since we were a little afraid surgery would put her 
behind.  God is good!

Praying for those who are still stuck in the hospital--I have much more 
empathy for you now! :)

Loren (wife to Kraig, mom to Keren, T18, 5 mo. and counting! :) )
http://webpages.eng.wayne.edu/~ad6075


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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