Mark told me that I really need to update this. I'm trying. I will admit that my brain is frozen up and I'm having a hard time processing all the info right now. So let me just start with thank you's again, the prayers and encouragement are amazing and oh so needed. Secondly let me tell you that John is capturing the hearts of everyone who deals with him and yesterday when the GI doc was talking to him he told him that 'he is now thinking about what to do to help him so hard that his brain hurts!'
The Psychiatrist is impressed with how happy and well adjusted John is. Child Life had presents for him and ways to help us explain all about transplant when the time comes for those explanations. His blood pressure was beautiful today, labs are looking great and all in all if it wasn't for pesky gut issues even the doctors have to admit they wouldn't know that anything was wrong with the kid.
The Brain Freeze for the mommy has come with the information that one of the surgeons tends to remove enough stomach that the child no longer is able to have a g-tube and has to have an NG tube until eating/drinking enough to not need any tubes. Two of the surgeons do this some of the time and one of the surgeons does this only when absolutely necessary. The surgeon on duty at time of transplant is not a choice of ours but of scheduling and therefore I have to remind myself also completely in the hands of God's timing.
Tomorrow John has an upper GI to go through, mom and dad have appointments with pharmacy and social work and dad is graciously taking the appointment with the surgeon because he's a great dad and husband and knows that there is just no way that I can go have this discussion or get the details of surgery and John surely doesn't need this information right now either.
Hopefully the roads will be clear enough that we will get to leave for home tomorrow. They were bad enough that we didn't get to go to Epiphany services but at least we are inside, safe, warm, together and got a much needed nap :)
The Food Adventure Continues
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I started this blog when we started changing the way we eat. Finding out we
needed to be gluten free, actually for me wheat free, was a huge big deal.
Late...
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