Two Thumbs up for Ty

Tylor waiting for his last appointment

Tylor recently had his six month check up at Mayo Clinic.  We went up the night before so Ty could get a good night sleep and not have to get up real early in the morning.

We saw Lisa Epp, the dietitian, first. She was very happy with his weight!  He is maintaining a healthy weight but oral eating is becoming harder so she suggested we just feed him what he likes to eat. It doesn't have to a well balanced meal all the time since he gets all his nutrients through he G-tube. I told Ty hey how many people get the permission to be a junk food junking from their dietitian? Our main goal is to keep him eating orally as long as possible so the food we feed him needs to be something easy for him to eat...like Mac N Cheese, PBnJ, soups, spaghetti o's.

Next we saw Dr. Patterson. He again was please with how is doing. His progression is very slow...he is actually pretty sable right now. I think this is great considering the onset of symptoms started eight years ago.  We talked about starting Ty on Cyclodextrin.  Dr. Patterson explained that it would be given on an uncontrolled basis and that we don't know if it will help or hurt him. He also told us to look at the big picture...Ty's quality of life! Tylor is very happy, he loves to go to school and has tons of friends. Giving him the Cyclodextirn could possibly change this. After some more conversation we decided not to pursue getting Tylor on Cyclodextrin at this time. Dr. Patterson told us to keep doing what we are doing....Loving him and keeping him health. We can do that!!! 

Lastly Tylor got his G-tube changed. Penny said that the sight looked good just a little redness from the old tube being a little tight. She gave us some pointers on how to replace the tube with little to no pressure on Ty's belly. Then we were on our way!