Overall, today’s appointment went pretty well.

Jaime is down in weight, but a lot of that is because he has lost so much extra fluid since starting Lasix. The good news is that his weight is still up from where he was after his last paracentesis, so we’re hopeful that means there has been a little real weight gain in there too. 🤞

They also checked his MUAC (mid-upper arm circumference), which is one way they keep track of his nutrition and growth. It was 11.1 cm, up slightly from 11.0 last time. It may only be a tiny increase, but right now maintaining and especially gaining even a little is something we’ll celebrate! Because of that, we’re sticking with his current feeding plan for now.

For the next five weeks, our biggest focus is still weight gain and growth. We go back to Riley on October 27, and he’ll have labs done locally next week to check his electrolytes and vitamin levels.

There was some encouraging news on the liver side too. His liver is draining bile well and is generally still doing its job, so depending on those labs, he may eventually be able to come off ursodiol, which helps with bile flow, and possibly his DEKA vitamins if his vitamin levels have improved.

At this point, one of the biggest things his team is managing is portal hypertension. Because of the cirrhosis in his liver, blood has a harder time flowing through it, which creates increased pressure and can lead to things like the fluid buildup we’ve been dealing with.

His team briefly discussed the possibility of a TIPS procedure once Jaime gets a little bigger. Basically, it would create another pathway for some of the blood to bypass the liver, hopefully decreasing the pressure and some of the complications that come with portal hypertension. It would not cure his liver disease or eliminate the need for transplant, but if his doctors decide it’s appropriate, it could potentially help buy him more time before transplant.Nothing has been decided about that yet but it’s simply one of the possibilities his team is considering for the future.So for now, we keep doing what we’ve been doing: feeding, growing, praying and celebrating every tiny bit of progress.

Five weeks to pack some meat on those little bones, Jaime! 💪