This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
Monday, March 21, 2011
Faith is taking a beating...
Faith's temperature was up yesterday, but came down today. She is taking regulars beatings from the nursing crew as they pound away on her to get the junk loosened up and suctioned out. They have been turning her onto her stomach and beating on her back which is quite a feat to accomplish with the jaw distractors on her face. It is something to keep her up high enough off the bed so the framework doesn't hit the bed as she bounces up and down from having her back pounded. Overall it was an uneventful day as her CO2 levels dropped quite a bit today. The hardest part right now is keeping Jesi entertained all day. She is getting quite skilled with the basketball hoop and ball that she set up. In fact, she was beating the pants off of me so I quit. In the end, it's another day closer to getting out of the belly of the beast (Ann Arbor - for those who don't know, I'm a Buckeye fan).
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It can be so tough getting regular mucous out of these girls - poor Faith! I pray that her extra dosage of the gunk will loosen up and come out asap! Wish we lived close enough for me to visit Jesi. It can really make the day pass faster when you have a visitor from the outside come in!
ReplyDeletePoor precious little girl. More torture than most of us have in a life time. fight Faith. Show them what you are made of.
ReplyDeleteLove Lilly's aunt shisshy
Wait...for those who don't know you're a Buckeye fan????? As if there is anyone who doesn't know that; lol! Go Blue! (again... cheering on the nurses :))))). Praying for Faith and for all of you. Ttys super-family!
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