We made it to the pool once while Alex was deaccessed.
We had a family fun day at Main Event. Everyone had a blast!
And a medical update on Maddy moo...
To be honest we are still in the figuring out stages, but this is what we know right now. Maddy's liver ultrasound shows changes that are consistent with fatty liver disease and inflammation. Normally, in children you only see this when a child is obese and/or has type 2 diabetes, which obviously isn't the case for Maddy. We ran some labs which showed that her triglycerides and cholesterol are both elevated. Her diet is not very high in fat, but we still need to make changes in order to prevent more damage to her liver. We are waiting on a special test that will show if she has a genetic disorder that causes high triglycerides and pancreatitis (both of which both kids have/had). Here is the tricky part- Maddy doesn't have two enzymes necessary to breakdown sugars and starches so we already have to majorly limit her carbs. Basically, she needs to be both very low carb and low fat. And she also can't have too much protein or her ammonia levels get high. So we are basically in a pretty rough spot. We have been in communication with multiple doctors and three dietitians who are all trying to figure out some way to keep her eating orally. We are pretty sure we are going to need to change her formula and increase the amount she gets through her tube. Maddy is having a hard time both physically and emotionally. She has had increased stomach pain and nausea and vomiting and is really scared/sad about the upcoming dietary changes.
Please pray for Maddy as she adjusts to these new changes and for me and the doctors to have wisdom to make the best decisions for her.
Ali
Alex is once again raising money for Cook Children's Hospital and Children's Miracle Network. If you would like to support him by donating or sharing his link, please click here.
