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Hi all! I know, I know..... it's been two years since I've updated this web site. So let's see what's been going on with our wonderful miracle boy Trevor and his family in that time. Well, to top the list Trevor is walking now! In fact, he insists on walking everywhere even though his legs get tired fast. I actually happened during Christmas break of 2004 (just after my last update). We were sitting in the living room watching tv and all of a sudden Trevor came walking down the hall not holding on to anything. It was awesome! I think having hand rails installed all up and down the hallways in the house helped him get his security in taking those all important first steps to independent walking. Even better, he no longer needs AFO's either, just a well supported ankle hightop shoe (we found lightweight, non-grip sole, hiking boots worked best). And, he's talking like crazy now too! It's still hard to understand him, but on his good days you know exactly what he's saying and what he wants. He also uses his aug com talker to help him when we're out in public or we just can understand what he wants. Last year this time we spent 8 weeks in Johns Hopkins Hospital for a feeding clinic to try and get Trevor off his G-tube. Now, that is the most incredible place and they are awesome! I've attached their website to the information page on this site if you'd like more info about them. Anyway, Trevor has always been 100% tube dependent due to severe gag reflux (talk about vomitting). As he grew out of his asthma and reflux, we decided it was time to work on getting him to eat. We went to Kennedy Krieger Institute in Balitmore, Maryland (part of Johns Hopkins) for a 8 week in-patient feeding program. The first two days they began the actual feeding process, I was in tears watching them (through a two-way mirror). But, by the fourth day Trevor was actually eating pureed foods! He would take them via spoon, swallow it, and not gag! It was incredible!!!! After a few weeks of this, he finally was taking enough at a feed to perform a Barium Swallow to see what was going on inside with the food. Unfortunately, he immediately and silently aspirated (see the info page on this) 100% liquids so drinking was out. He seems to do okay on the pureed foods however, so we decided to keep on the process and re-evaluate him again when his intake level increased. After a month of this, Trevor was on half formula via tube and half puree foods during the day and doing great. We were up to 2 ounces of food at a feeding and ready to do another Barium Swallow test. Unfortunately, it came out bad. He was silently aspirating half of the foods and since that put him at risk of pnemonia, he was forced back to 100% tube feeds and we went home. It was a dissapointment, but now we know. Other than that, Trevor's great and is still an extremely happy, fun loving, determined young boy. He just turned 9 last week and got a battery powered four-wheeler bike to ride when we go on our evening walks. That way he's not stuck in his wheelchair, and he can go on the long walks to the park without getting tired from walking. Thanks again for your support and checkin up on Trevor. I'll put some new photos on the site as well for you to see. Take care everyone! |
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