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.
Thursday, September 20, 2012
DIAGNOSIS - Faith is Home
Two of the T18 families that we sent to U of M were there so it was like a T18 convention at Mott Children's Hospital. Mylah is still there recovering well from heart surgery, and Ameir was life-flighted there last night with rsv/pneumonia. On a very positive note, he seems to be a little better and slowly on his way to recovery. Please keep both of these very little ones in your prayers.
Faith after her bath
Faith is having a colonoscopy this morning. Depending on what they find, we may have exploratory surgery as well. We are praying for them to find the source of the bleeding. We do have a concern about anesthesia because her hemoglobin level is only 8.5 and usually runs over 11. Not having the full blood level is troubling when facing surgery.
Tuesday, September 18, 2012
UPDATE...Lost Lots of Blood just before ER
Headed to ER and likely PICU
Faith's stool was different than the previous times we had blood in her stool. Last time was way back in February - it is sad when 6-7 months seems like a long time to stay out of the PICU. So her stool was bloody, but also had some mucus in it which was also bloody. I changed her diaper right before she left and it looked to be almost pure blood with some mucus in it.
Other than being sick a couple of times Faith has been doing well since our last February blood issue which resolved and had not come back until now. The only thing we did differently was to give her some pasteurized cider. Who knows? We will try to keep you updated and appreciate any and all prayers.