I apologize that I have not had a post in a couple days, but there is good reason. Things have been going so well here that I have just been taking the time to relax and catch up. Jack has been progressing with everything that we are working on at home. His development is really improving. He is starting to ‘enjoy’ tummy time a little more ad is showing it by putting up with this awkward position for 10 minute increments. I try to get about 2 tummy time sessions in on each work day. There are plenty more during the weekends. He’s getting really good about assisted sitting on the couch or on your lap. We are now working on his strength to hold himself up so he can play in his exer-saucer.
He is also sleeping throughout the night again which is a real win-win for all in the house. Granted, he does fight sleep, tooth and nail, but once he gets there he is out until morning. This has given Matt and I a wonderful chance to get some sleep ourselves. With no more narcotics to be administered and us taking turns to fill his feeds at night, we are a lot more patient and pleasant to be around during the day. I would say our gripes, bitches and bickering has decreased by a solid 50%!
Jack is also working on increasing his intake of pureed foods. Namely, fruit. It only took him two days to finish a stage-one container of Gerber peaches and we are now working on bananas. This may not be all too impressive, but keep in mind that he is also being fed continuously via his gastric tube, 24 hours a day. This is like eating dessert after the Le Tour de Thanksgiving. You know you don’t have the room, but it looks so good…You’ll just have a little.
Peaches, Dominated.
Just to up the ante, I informed Jack that if he works real hard on eating solids, we can get rid of the gastric tube, get rid of the IV tree and feast on some premium steak. I think he’s gunning for beef (not puree, yuck).
The best news of all…Jack is official off oxygen! He has been keeping his oxygen saturations well above 95% (his allowable minimum) and is starting to fight the cannula, so his High Risk physician has put in the order to only use oxygen as needed if he desaturates below 92%. Jack is a clean faced happy boy with no cannula tail following him through the house. And we have no oxygen concentrator humming loudly next to the couch. Life is GREAT!
In a couple hours, we will be making the visit to Cincinnati Children’s Hospital to meet with a plastic surgeon. Jack is going to get fitted for a helmet to help correct his flat head (plagiocephaly). His legs and cheeks are already round, now I want the whole fat-baby package. One round, happy baby!
We Know Jack 