Gavin is doing a little better with the gagging issue, but still has problems with it throughout the day. We saw the surgeon who did his G-tube surgery this week. He told us that this may stop and it may not. There isn't much that can be done. He said there is a medicine to help with it, but not here in the U.S. Hopefully it will get better on it's own after time.
Gavin is off oxygen all day long now and seems to be doing well with this. He has it on at night and he sure does complain when it's time to put it back on! Hopefully his echo shows that he can be off it for good soon! His pulmonologist wants to do a sleep study with Gavin off the O2 before we take him off completely. He wants to make sure that he doesn't desat during the night first. I pray that these tests show that Gavin is ready to be off because he thinks he's ready! He yells at me when I put it back on and continues to try to pull it off his face through the night. Half the time I check on him to find it pulled out, so I don't know how good it's doing anyway!
Bootcamp is going OK, but I don't see much progress with him. He is getting better head control and seems stronger, but like everything with Gavin it is taking longer than I would like! I really need to relax because Gavin has 2 strikes against him. He has been hospitalized for so long and he has Down Syndrome. I don't know why I think he should be progressing faster. I guess because I'm used to it happening naturally with our other children. We have to really work for Gavin to develop. Some days this bothers me because I feel like there is such a long road ahead! We don't even know how far Gavin will get developmentally. Other days I feel up to the challenge and work him hard! I just try to take it one day at a time and trust that God will get us through.
I tried feeding Gavin babyfood again today. He did not like it at all! He isn't used to having anything in his mouth and what has been in there, like the vent tube, wasn't pleasant. So, this will be another challenge for him. We will have to keep trying and hope that he changes his mind because we don't want him to have to get nutrition from the tube forever.
Hope you all had a great 4th of July! We were able to take the older boys out to fireworks! Grandma and Grandpa O. offered to watch Gavin. It was great getting out with the boys for some fun again!
Thanks for your continued prayers!
Love, Alicia and Family