Tuesday, December 22, 2009

Learning to crawl? GI update

This morning was our first GI appointment since the whole Aero digestive saga here began. The airway has trumped it until now. His GI doctor commented on healthy Elias looks in regards to weight. He could notice the weight gain. We discussed the fact that no one had really been managing his feeding regiment. Everyone has been so stand off-ish because of the FA, weight gaining and growth issues coupled with the fact that Elias is 100% via G-Tube. It simply intimidates everyone for some reason. Well his GI doctor today said he had no issue handling that for us, so thank goodness. He did comment that while Elias weight gain has been nice it is easy to get carried away and make him fat. They will closely monitor his weight to curb against that. For now he feels the regiment we are on is just fine and we should continue as we have. He does want to get a GI study done, which will be after the first of the year. Our January calendar is already quickly filling up. The study is no real cause for concern, but we do need to check a few things especially with all the vomiting Elias has been doing lately. He said a phrase today we had not heard in awhile, it is possible the G-tube is too close to the pylorus. It is doubtful and we cringed at even hearing that given our history with this darn tube. It would be a very easy and logical explanation for the vomiting, but again not likely. He has to check and it might yield some additional information that could provide useful. Overall the appointment went well and we feel pretty good about the course of action and potential plan. As someone commented to us, it looks as though 2010 is set to start off positively. That would be refreshing indeed. The last two years have been very rough to say the least, it is about time Elias had some good luck.

Elias has been really loving the life at home despite the busy schedule. He has learned to bear down weight on his clubbed wrist and raise his head up as if to be in a crawling position. He has been working on this for the past few weeks, but the last 48 hours he has really rocked it out! You can tell elias crawl 1 he is trying to figure out the next phase, and that will be to actually crawl! It also appears he is working on figuring a way to get from that position to some fashioning of a technique to sit up. His shortened arms are just not quite long enough, but I think given more time he is going to get it figured out. He did all this on his own because he will NOT allow us to put him on his tummy at all. He just out of the blue began his own version and worked up to what we saw last night. He really is amazing to adapt on his own like he does. He had his first home Occupational Therapy session today. It went well as today was just kind of trying things and learning Elias. He wasn’t pleased with all the activities, but tolerated the therapist games eventually leading it into what HE wanted to do. We all got some good laughs in watching him methodically do that. Unfortunately with the holidays we have a few weeks off before our next session and the others begin as well. None the less Elias is developing pretty well without it so I do not think he will miss it too much. We can only imagine how much he might take off once we are in full swing with the therapies!

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