Great News

We are cleared to travel home!  We just have to go to one more visit in May to be sure but we are okay to travel home after almost a year.  Brent will fly out in May and we will fly back with him when the kids are out of school.  We are so excited!

Adelina had an appointment with speech and nutrition on Thursday and after that we saw her cardiologist.  Speech is on board with teaching her hunger before we go straight to the Gtube and has started us on the road to bolus feeds.  In other words we are slowly increasing how much she gets in three hour blocks until she is being fed for one hour, off for two, on for one, etc.  During the night she will still be continuously fed.  So far we have given her bananas, applesauce, a smoothie (which she liked).  She likes to suck on apples.

Dr. Pinto came in and turned off her oxygen!!!  She did just fine and now I have the song from Pinocchio stuck in my head, "I've got no strings to hold me down..."  We can go outside without several minutes of planning.   I can follow the kids out to the garage.  We are no longer a tripping hazard.  So many wonderful freedoms.  We are still on at night but have really enjoyed the freedom of our last couple of days.  

Tough choices

Huge improvement today and another testament to the power of prayer.  Adelina took, from a bottle, 10 cc's of milk.  That is about 2 teaspoons.  Prior to this amazingness we have only managed 2 cc's.  We need to decide if we can get her off the tube quickly or if it would be in her best interest to get a G-tube which is placed directly into her stomach with a "button" above her belly button for feeds.  She has three speech therapists that work on feeds and they are all very different.  One thinks that she will learn to eat around age 4-5, she is in no hurry to get her eating by mouth, pretty discouraging.  One feels that we need to get her hungry and she'll eat (this is what happened today).  The third had a tube fed child until the age of eight and recommends not waiting for a G-tube.