It has been a while since we have shared a detailed medical update with all of you and that is because life has been so incredibly normal for us here and there hasn’t been much to report. We have been enjoying our longest period of time with not hospital stays or surgeries and Zeke has been keeping us on our toes with his increased mobility and personality. I did want to share the results of a great GI appointment yesterday that has us on such a high. Zeke has been gaining weight at a great pace, so much so that we have been able to reduce his lipids in volume and length. This is important because the lipids are the thing that is so hard on his liver and if he can gain weight without needing as many lipids it will greatly improve his long term outlook. His labs came back normal with a total bilirubin of less than 0.2!! Our GI doctor also is comfortable with exploring the possibility of reducing the time Zeke is hooked up to his TPN from 20 hours currently to 16-18 hours depending on how his blood sugar handles it. This would be a huge improvement on Zeke’s quality of life since that just means more freedom for him. Zeke has also been increasingly showing an interest in food and we have a referral to a feeding clinic to work on developing his ability to eat and swallow and try to get him to tolerate more oral feeding. Also this week we had an appointment with his physical therapist and we started talking about the thing we need to work on prior to a preschool evaluation for next year. I know that is a long way out but it’s so crazy since we were dealt such a grim outlook early on in his life that it was emotional just starting to talk about it. Zeke is just developing and growing by leaps and bounds and I just want to scream it from the rooftops! This has been a challenging journey for all of us and to have these kinds of results just reassures us that we are doing something right. I know there will be other challenges down the road with other potential surgeries and always the possibility of infections or other things that come up but right now we are enjoying this time and positive outlook. Thank you all for your prayers and thoughts, it really is helping and Brittany and I love hearing from all of you!
Posted on: Thu, 22 Jan 2015 22:08:55 +0000
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