This is Eli. Guess what everybody? There's a thing called the Courage Classic. Have you heard of it? It's where my Daddy rides his bike in the mountains. I am supposed to ask everyone to give money because my Daddy is riding his bike in the Courage Classic. You know what? All the money goes to The Children's Hospital, my hospital, where all my doctors are. It's a really long bike ride, like 3 thousand hundred twenty million miles, and Daddy has been riding his bike all the time. So much that he can't even walk some days. He's gonna ride for three days on twisty, turny roads, up and down mountains and then he will probably hurt a lot and say ouch when he walks.
I love my hospital and all the doctors there that help me feel better. Daddy says he is riding for me because he wants to help other kids who are sick too. Help him give something to the amazing place that has given me so much.
Please help The Children's Hospital by sponsoring him in this year's ride. Check out his page on the Courage Classic website and click the big green button to donate:
Sorry it's been so long since our last update. Everyone is happy and healthy, and the results of Eli's latest MRI were good news.
Eli is having a great summer: he loves his new summer school and his wonderful teachers and we are finally starting to take advantage the pool. We have been up to the mountains a few times and are really enjoying the beautiful Colorado summer. Eli is really getting into music, playing drums, singing and dancing. At the renaissance festival a few weeks ago Eli started chatting with one of the performers (the kid sure loves to talk) who invited him on stage, handed him the microphone and Eli started singing "Puff the Magic Dragon." It was hilariously cute and I am kicking myself for not getting it on video. One of Eli's favorite new things is his Hip-hop dance class. He loves hip-hop and always makes us stop on hip-hop songs on the radio. There are a couple of great youtube videos of some of the first moves he learned.
Eli's health is great (in many ways better than ever) and he seems to have completely recovered from the surgery. They seem to have gotten nearly all of the tumor. There is a little bit of tumor tissue left in the sella as shown in the picture below from his MRI on July 7. We are hopeful that this mass will remain stable for as long as possible to avoid radiation or another surgery until he is older. He'll have another MRI in October and hopefully everything will look exactly the same.
One unfortunate and potentially terrible consequence of the surgery was apparent shortly after the surgery and has been confirmed to us over the last 3 months. Eli appears to have what we are calling hypothalamic insatiety. One of the most common consequences of this surgery is damage to the hypothalamus which controls, among other things, appetite. Without this part of the brain to sense fullness, you are constantly hungry. Many of the people with this type of brain damage are unable to control their appetite and they become morbidly obese. For this reason the condition is usually referred to as hypothalamic obesity. We don't like this term because it implies that everyone with this type of damage becomes obese. We are optimistic that we can avoid this for Eli and so far things are going pretty well. We are being extremely vigilant and have him on a strict calorie restricted diet. Eli hasn't gained much weight so far and is still looking pretty slim. Hopefully the weight he has gained is related to him recovering from surgery and his increased stature (he's 2 1/2 inches taller than he was in november when he started growth hormone). As you might guess, the diet is pretty hard on Eli, I can't imagine how hard it must be to be hungry almost all the time. He is dealing with it remarkably well though, some days are great and some days are pretty hard. We are all getting better and better at dealing with this and maybe because Eli is so young the healthy eating habits we start now will keep him from becoming obese.
