Owen has had many appointments each week, usually 3. He is in the process of getting qualified for home occupational and speech therapy. This will be so great for him to have these services in our home. In order to qualify, a baby has to have at least 1/3 deficit in 1 out of 6 developmental areas. The initial assessment summary was that he was delayed in his self care (eating), speech, and gross motor. We will get the full scores next week. None of these were surprises to us, and we also know that he isn't too behind. His social scores I think will be high!!!
Owen had his best ever echo today. I think it was due to Baby einstein being on the entire time, but he was still for 30 minutes. This is a very big feat for any child, let alone with someone pressing on your chest and neck. He never ceases to amaze us. The EKG was also performed in the "movie theater" and it was his best one yet. Didn't even cry until we we were pulling off the last few stickers!
Our cardiologist was pleased with Owen. He decreased his lasix to once daily (down from twice), and said he wouldn't need to see us for another 3 months! He is always accessible to us, but that was so great to hear. He is still hopeful that Owen's right side of his heart will grow normally and could someday function as a 1.5 ventricle kid versus 1 ventricle.
The next step for his feedings...
Our cardiologist is going to work with the GI doctor to get him on board. Via email, the GI doctor basically wrote me that he wasn't comfortable putting a gtube in Owen. This was a big source of frustration for us, knowing how much he has struggled with his feeding. It seems like he will have the nasogastric tube forever... But "the Riv" said he was okay with a ng tube out trial. As groovy as this sounds, I am a little realistic here. It has taken Owen 9months to have a negative association with food, so that doesn't all go away in a day without the tube irritating his throat. But, it is worth a try and we have never been in a situation with his weight to try it. Now that is not an issue! We do need to watch for him getting dry, as that is also hard on his heart. But when sick, "normal" kids don't eat for a day or don't eat much for a day, and we have always been on his regimented schedule for feeds. Wish us luck! Not sure when we are going to do this trial but soon. His tube is due for switching so it will be this week or next. If Owen does need the gtube (very likely) "the Riv" said it will be this summer, probably July or August, and that he would like to be there. So looks like Owen will have his ng tube until he is 1, unless he proves to otherwise be the moose he once was.
Good luck with the feeding!! Just curious, but have you been giving him baby food and formula? I bet that little guy is going to catch up on a lot of his skills without that tube in him! :)
ReplyDeleteHe's been getting rice cereal and other baby foods since 6 months. At about 7 months he stopped accepting the spoon and bottle. He has always had breastmilk with organic formula added to make it higher calorie (just 1scoop for 6 ounces of breast milk). I put purred foods into his bag of breast milk now. He "eat plays" with purred foods, bananas, avocado, mum mums, puffs, sippy cups, but rarely does he put food into his mouth. We are starting aggressive speech therapy next week!
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