Thursday, June 8, 2006

A Big Update

Since Sunday a great deal has happened with John. Monday was a day off for all of us and John was doing well in terms of eating in the morning, but as the day went on he started having tummy trouble with too many poopins. We talked to the GI team at St Louis and we switched around the way that we gave him the Metamucil to half the amount of Metamucil in the same amount of water only once a day. This seemed to help through the night and with some extra fluids he slept peacefully.

Tuesday was a big day with school for John, it seems that he is getting more familiar with the trip as he gets excited about school a little bit sooner each time we go. On the way we stopped to pick up breakfast at McDonald's and John ate very well, almost a whole egg from a biscuit. His speech therapy went very well with Amy giving us some homework for him and also giving us some possibilities as to his speech habits that we have heard from him. It is possible, though not clinically diagnosed, that John has a neurological issue known as developmental vocal dyspraxia. This condition fits what we see John doing vocally. This is why he acts like he has so much to say but can't seem to get it out. The way Amy described it there is an obstacle between his brain and his motor controls for speaking, and the more situational stress or sensory input involved the greater the obstacle. This is why when he is relaxed and reading a book with mommy he can repeat a complex work like ladder once on his own but can't when prompted by mommy, daddy, or Amy. It also explains why his little mouth is moving so much when someone is talking to him on the phone but he is completely silent. There are therapy plans that Amy is investigating and we will probably be looking at months if not years of speech therapy ahead for John. The rest of Tuesday was spent getting errands taken care of and the opportunity for John to have more fast food, which he wasn't too thrilled with. When we got home John went down for a good nap, got up to play and be cute, and then went to bed and slept well through the night.

Wednesday was a day of contact and information about John's various issues. The GI team found out from John's latest blood studies that his levels of vitamin E are low and so we will be picking up some supplements for him tomorrow. John's appetite wasn't great through the day, but he did eat some and his poopins were better than Monday's. He took a good nap that afternoon and spent the time afterward in his gait trainer and playing and being especially cute for our friends who had come for a visit. He went to bed a little later than usual and had a good night.

Today hasn't been as good for John, especially this evening. He did eat pretty well to show off for our friends, but hasn't eaten anything since then. His poopins have not been as good, but for the most part today has been excitement and play. He wore himself out playing in his gait trainer and and has been so cute especially with the way that he has been wiggling around in his crib. This afternoon we got some pictures of him playing in his crib before we got him up from his nap.

He was turned sideways on his back with his feet stretched out over the top of the side rail. The little boy was lounging and playing with all his stuffed friends. This afternoon was full of fun for him but he didn't eat anything else and he started acting like he was going to have some trouble through the night. When it was time for bed we laid him down, but he wouldn't go to sleep. We got him up to see what he needed and after some big burps he finally let loose and puked a good bit. After cleaning him up and getting him ready for bed again we put him down again. He acted like he would sleep, but after a little while our friend, who was sitting closest to the baby monitor, swears that he said, 'Mommy, want daddy.' It wouldn't surprise us if he did say that. Well of course daddy went and got the little sentence speaker out of bed. We cuddled for a little bit and finished the card game we'd been playing. Then we tried putting him to bed yet again. After a little bit we heard some strange sounds on his monitor and went in to find that he was starting to puke again. This time he needed a bath to get cleaned up, but obviously felt better for it, because he had to take one of his bath toys with him when mommy took him out of the water. After some tummy rest and getting him back in a clean bed we have set him up for some extra fluids and are praying that the rest of the night will be a quiet one.

Tomorrow is a big day as we are getting his new braces for his feet and ankles and we'll be seeing his PT Shawna for the last time. She has done so much for John, but now he will be seen by another PT.

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