On Thursday, June 30th we got the surprising news that we were going home the next day. The Plastic Surgeon had decided that his jaw was where it needed to be and that he would distract one last time that evening and then stop. That afternoon was filled with videos we had to watch and other surverys and things that had to be done in order to leave the hospital. The 3 of us, Ricky, Tripp, and myself, finally got back to our house at around 330 Friday afternoon and Bella got here shortly after that. Our first night at home actually went pretty well, Tripp slept the whole night both Friday and Saturday nights. Bella is in love with her new brother but she is still also adjusting to not getting all of the attention, but she is a great big sister! Saturday evening we did have a little excitement when Tripp pulled his gtube out. This ended up with a surprisingly quick trip to the ER to have it placed back, they actually said that this happens quite a bit but hopefully no more for us. But other than that Tripp has just been getting used to being home and we have been trying to get somewhat of a schedule of how a normal day will be. Saturday morning we had a well check up, thanks to our awesome pediatrician with Saturday hours, and it went well. He weighed 12 lbs and 2 oz at his appointment, so he is finally gaining weight without losing it. We will be going to his office pretty often just for weight checks to make sure he is getting all of the food is needs. He will be finding us an audiologist and a gi doctor here (for gtube) for check ups next week and we will continue with ent and plastics at WF. We will be traveling there the 13th, 19th for sure and then a couple of weeks after that to have the distractors removed, and about 2 weeks after that to have another swallow study done. Were hoping these results will be better and at that point we can start working with a bottle again. If there is still any aspiration, they will continue to schedule swallow studies around every 6-8 weeks. After that he will have regular check ups with several doctors in Roanoke and at WF to make sure everything is going the way we want it to. His next planned surgery will be around 8-10 months when they will fix the cleft in his soft palate and they will also undo his tongue-lip adhesion at this time. And then another surgery to reverse the gtube, this will be when he is able to eat everything he needs to without aspirating. For this were hoping before his birthday, but in some cases it can take much longer.
Even though this is no where near the end of this road for Tripp, at least now we are all home as a family together.
God is good, all the time <3
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