Busy day, disappointing news.

Today was a busy one. Duh, the title. We had a nice lunch with a mom and daughter we have bonded with from MDA summer camp. We had pool therapy and speech therapy for Garrett, but the first order of business was a neurology checkup for Garrett and Addie. Addie's was pretty much a run through appointment to get her health papers signed to release her to MDA camp at the end of the month. Dr. older chatted with her for a few minutes, checked her reflexes and noted her eyes were pretty droopy. Hhhmm. Then came Garrett's turn. Daddy-O and I have noticed that Garrett is looking really scrawny these days. He has gotten taller, but he looks like a little walking skeleton. Some black shoe polish and a pot belly and he would look like those suffering Ethopian children we see on the Feed the Chuldren fundraisers. SO when Dr. Golden came in, I was sure to have Garrett's shirt off so I would have her look at him. She said she sees changes, and not ones that extra calories can help. She thinks his muscles are showing atrophy, or wasting. His little upper arms look so frail, and his thighs, too. I thought maybe we needed to just fatten him up some, but the way the little dude eats, I have no idea how we can make him pork-up. She wants us to see the GI doc soon as he is having more constipation. She also wants us to meet with his pediatrician to talk about monitoring his blood sugar. Then there is another specialist we need to see...endocrine. She said to try the pediasure type drinks again if he will drink them. She thinks a couple more pounds would most benefit him if he gets sick and needs some fat stored for that. But she is pessimistic that we will see his weight improve and doesn't think that even gaining weight will help the wasting. She is really looking forward to getting the muscle biopsy results back so we know more about him.
To say I am a bit concerned is the understatement of the century. My heart is heavy, my brain feels tired, and I feel scared tonight. The evening at home was great. Daddy-O was home after two nights away and we swam and played outside and then watched Johnny Tremain, a movie about him, and based on a book we read this past year in our homeschool program, Sonlight. www.sonlight.com
It was good to have distractions. It was hard to focus, but it was good not to!!! I took a long bath with my little Ethiopian tonight in the girls' tub. We had fun playing like Garrett's rubber ducks were at the fair. He was hilarious!!!
He is also sleeping more now and complaining of the heat outside. Bummer.
Who really knows what's next for any of us. But I can say that I am horrified I am watching my little boy wither away..............PLEASE GOD let these tests give us direction and methods of helping our