We finally have fallen into a schedule with Grant. He is adjusting really well and recently has started sleeping through the night again. We are doing 3 tube feedings a day, and still giving him one bottle at night while he sleeps. So far we haven't had any problems. He does puke/spit up occasionally, but I wouldn't say that it is frequent. He is doing really well taking water by mouth, but he isn't that thrilled with very many foods or other liquids. He used to eat puffs really well, and would eat them one after another, but now puffs don't seem to interest him at all. A dietician suggested trying more bold flavors and trying to give him some watered down juice. I plan on trying that in the coming days.
I do notice that Grant is more engaged, interested, and alert. He is reaching much farther and in more directions than he used to before the tube. He is also throwing toys off his high chair tray. His therapists have said that they are impressed with his progress. He still isn't very motivated to move on his own and I really think that is the main thing that is limiting his mobility right now.
A few other things: I have said before that Grant had a genetic
duplication show up on his microarray test, and that we were waiting to
get his genome sequenced to see if it is significant to his medical
issues... well, we were denied for the test. We are going through the
appeals process, so hopefully we can win. Also, Grant has medicaid as
secondary insurance now, so hopefully that will help things. We are also so looking at getting Grant baptized and we took our first class today. He should be getting baptized within a month or so!
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