Sad News

K's mom is in very grave condition. She's on life support and is not expected to recover. We already had to go to Nashville for an appt. at Vandy for A on Monday, so K's going to drop us off there today and head on up to Knoxville this afternoon. Please pray for him.

Secondly, A is struggling with a serious chest infection, which the anesthesiologists are very concerned about for surgery on Tuesday. If it has to be postponed it won't happen until after then new year.

A's jaw distraction is scheduled for September 11th. She'll be in the hospital for about 2-3 days and then she'll be in the distractor appliance for about three months - three weeks of which we'll be turning screws to pull her jaw forward. The reason that this surgery is necessary is because her airway is blocked by her tongue due to the fact that her jaw is recessed so severely. This is the reason why she has a trach and a feeding tube.

This surgery is has an extremely high rate of success, and we're really excited that she is going to be able to go ahead and have it done. The sooner she gets this done, the sooner her trach will come and and the sooner the g-tube can come out. It is extremely important that we get that tube out as soon as possible because of the risks to her development (particularly nutritionally) that having it in so long causes.

A doing SO great at school and in her therapies. She's learning new signs all the time and is really making huge progress in physical and occupational therapy. She's gained weight AND height, and her pediatrician is really pleased with where she is on the growth chart (even though she's in the 5th percentile, she is height/weight proportionate). She's also drinking A LOT of water with a regular cup these days, so much so that we have to watch out to make sure to close the toilet lid and tip over any water receptacles in the yard, or else she'll be chugging that down.

We're working on helping her learn her colors and to point at pictures in books. We read tons and tons of books. We also like to make music with our drums and the new rhythm wall that K and I have built for her in the backyard. So far we've got a "chime" made from recycled formula cans, a beer cap chain that jingles, and a bamboo mobile that makes very pretty sounds. Lexi likes to carry around utensils from the kitchen to bang on her new wall. We LOVE it!

Anyway, please continue to keep her in your prayers, and us too. It's been such a joy learning from and with her, and we are so grateful to have her in our lives.

Typical?

A. has Pierre Robin and, therefore has an atypical cleft palate (is there actually such thing as a typical c.p.?). Anyhow, yesterday we went to see her craniofacial surgeon to discuss her upcoming jaw distraction in September. We also asked about the time-line for getting her palate repaired and were told that the tissue on her palate is in bad condition due to poor previous attempts to repair. He said that the only option at this point (beyond an obturator) is to sew her tongue to the roof of her mouth for (I think) 3 months and then slice off the part that has adhered to the palate to create a new palate.

Has anyone had this done, or even heard of it?????? Doc says it's pretty awful. And when a doc says it's bad, I worry. Would it be better to just leave the obturator in forever??? Anyone have experience with obturators?? With jaw distraction??