gradys all stars

Christmas seemed to sneak up on me this year! I have been meaning to post an update on the kids but we have been so busy with holiday parties and events.

Since Drew had his feeding tube placed he has gained 8 pounds which is great! We have obtained better control over his muscle spasms too. He is still eating by mouth but we have started to give him some tube feeds on the days he does not feel like eating by mouth. We had a home equipment evaluation the week before Christmas for a medical bed and some bath equipment. We have been warned that insurance will most likely deny this request so I am hoping that we hear back quickly so we can just purchase the bed and bath equipment. Drew’s skills are still regressing and his sight has deteriorated. He still laughs at Trent and his friends. His smiles and laughs can brighten the world.

Trent is completely obsessed with hockey lately! He carries his stick everywhere he goes and now he carries little hockey figures too. He is a great little brother to Drew always sitting with him and placing toys on Drew’s lap. Trent has been working with a speech therapist and he is talking more. He has not shown any other signs of Batten Disease to this point.

We are still considering going to China but are waiting for the Cornell study to start before we make our final decision. At the moment, the study is in the final stage of regulatory review so hopefully we will hear something soon. If we go to China for treatment it could prevent them from participating in the Cornell study.

Also I wanted to let everyone know that we are so thankful for all the thoughts, prayers and donations we have received.