Mario Monthly Doc Visit

We had Mario's monthly check in with the transplant team this week. He's gained weight - up to 7.6 kilos/~16 lbs. It appears to still be "real" weight. Mario continues to have more trouble absorbing fat soluable vitamins. We keep adding supplements...he's on 2X/day ADEK plus additional K 2X a day and now adding some D once/day. The worrisome one is VitK which when low can cause problems with blood clotting (slower than normal, causes bleeding issues so really bad). We have to monitor this closely, so he will have blood tests every 2 weeks for now on. They also doubled his Urosodiol (bile acid)...mostly due to the fact that he's bigger.

We discussed our options between a) list for tranplant now or b) continue to manage the vitamin levels and gain more weight. We opted for b. I have two main reasons for this...1) he is HAPPY, and is not experiencing any discomfort (yet) so as long as we can gain weight and manage his vitamins with supplements it seems better to wait 2) it would be a fantastic milestone for Mario to get him to his 1st birthday BEFORE transplant. Main reason for this being that he would get his MMR, Chicken Pox vaccine. If he is transplanted prior, he will never be able to get vaccinated for those diseases.

That's the scoop for now. Of course, everything could change at any time. But for now, we manage the vitamins, continue to gain weight and hope for a birthday party pre-transplant. Send him some good growth vibes and continue to think positive. We'll update in a couple weeks or sooner if anything comes up. Our Love, Phoebe and family.