It has been a great start to the week with more progress being made each day! Yesterday, Charlie got the ok to attempt decreasing his feeding tube from running 24 hours a day to 12 hours at night only. He is thrilled not to have to carry around a backpack of formula all day long!! This is a huge step forward but one that requires Charlie to really increase his oral intake. He, of course, wants to eat but it also causes him more pain/nausea. We have to push to get his calories in before 4 pm because his stomach now empties mainly by gravity. If he eats in the evening, the food will sit in his stomach making him miserable all night. This morning Charlie did a great job of taking small bites over a few hours and drinking plenty of fluids. Hoping he can continue to keep this up. This afternoon, he got his PICC line removed so no more IV fluids or lipids!!! He can now take a bath without being wrapped in saran wrap :) and got the ok to swim in a few days!! Another huge victory for him!! While at the clinic this week we got the chance to meet up with two other families that we met this summer at the hospital with similar journeys. Lily is a 10 year old that has been in the hospital each time we were there this summer (so a lot!) and is tentatively scheduled for a TPIAT next month. As hard as some days are, seeing Lily was a good reminder of how far we have come! It breaks my heart to see other kids go through the misery Charlie went through. We also got the chance to catch up with Austin. He is 16 and had the transplant back in July during the time we came for our evaluation. He is in town for his 3 month follow up and is doing great. He and his family have been such an inspiration to us through all of this. And for the best news yet..............Dr. C said today that if things go smoothly this week we may get to leave town as early as next week sometime!! As awesome as this is to hear, I will be honest in saying it scares me a lot. We are beyond thrilled at the thought of not having to be away from the other boys but going home will be a little overwhelming. Here Charlie is my only job 24/7 and going home I know that wont be the case. Day by day has been what we have said all year long and we will continue to live by that. It will undoubtedly feel wonderful being home!! Thank you to everyone for all your prayers and support in getting us to this point! It is surreal to think of how far we have come and how close home is to being a reality! #homeisinsight #2moredaysuntiltheboysareback #GodisGoodandWeareBlessed
Posted on: Tue, 07 Oct 2014 22:04:32 +0000
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