Just a quick Alex update…
He still has his feeding tube, but only for precautionary reasons at this point. He has been eating anything and everything, has been very active with only periodic mild to moderate pain, and his insulin has been reduced yet again this week. He still has an insulin pump with constant insulin being infused, but it has been reduced to a very small amount. Currently we count every carb that he consumes and he gets a bolus of insulin for these carbs, but next week we will be trialing bolusing for only large meals. This is huge and means the islet cells are functioning!!!
He is still on a large amount of meds around the clock, including the chemo therapy, but the meds are all oral now instead of liquid via his feeding tube (which makes it soooooo much easier) and the frequency of bloodwork has been increased to every two weeks, which Alex truly appreciates.
We are still making trips to Cincinnati every two weeks, but this is actually to see the pain specialist/physical therapist to address his deconditioning and orthopedic issues (fractured spine, sternum deformities, kyphosis/lordosis of the spine, flat feet). He will follow-up with the other specialties in September (although we communicate with Endocrinology weekly).
I have not been able to return to work as of yet (many have asked) due to frequent glucose checks around the clock, insulin infusion/tweaking and bolusing, medications around the clock, and repeat trips to Cincinnati, but hopefully this will be a possibility in the near future, especially once Alex is settled in school (his oldest brother is settled at college), and a good routine is in place.
Thank you all again for your continuous support. It has been so greatly appreciated. I really hope you are able to celebrate with us August 25th. It will truly be quite the party!!!