GI appointment and update

Broc saw GI and they are very happy with how he is growing. A gentle giant I have. Well 2 including his brother. Both boys have now hit 5 feet. I will need a step ladder soon. We are still trying tropic feeds at night for 12 hours. So far he is only tolerating 72oz in total but we will take it. It’s really helping his liver. His bilirubin level is coming back down under 2 so we are very happy. Broc continues to suffer with ileus’s. We will do some imaging soon to see how his intestines look after they narrowed in March.

Since Broc has stopped taking his Co-q10 he is napping more often. Some days his naps last 3 hours which is worriesome as we never know if he’s ok or getting ill. But he wakes up fine and ready to go again. Hoping that once he has had his biopsy we can start it again. Since starting his meds for his TS he’s having a lot less tics daily. He is able to focus a little more too.

We thought that because we didn’t hear from Cardiology everything was fine with his MRI results. I got a call last week to say Brocs case is once again being presented to the Cardiology Team to see what they think. We have been told that surgery is still a small possibility. Not knowing is proving to be very difficult for me. I really like to plan and have everything organized and I’m not able to do that. We are also waiting for a date for Brocs muscle and skin biopsy.  He will be having an iron infusion in 2 weeks to give him some much needed iron.

Our Buddy got new glasses today to help him see better.