The nurse came, I learned how to mix the growth hormone and load the syringe, add the needle and set the dose etc. Then came time to give it to Wyatt. He flinched, I flinched and scratched him with the needle. He was screaming, I was tearing up and the nurse was urging me to hurry up and do it again. So I repositioned Wyatt, the nurse held Wyatt down and I gave him the shot. You have to press the needle down for 5 seconds. 5 of the longest freakin seconds in the world while your kid is struggling and screaming. NOT FUN!
Then we had lunch and drove to Denver Children's Hospital (1.5 hours each way). Wyatt didn't want anything to do with the tech that was trying to look at his eyes. We had to get 3 drops in each eye to dialate them. More kicking and screaming and pinning down. Then after 30 mins in the waiting room. More kicking, screaming and pinning down so that the Opthalmologist could look at his eyes.
Good News: His short sightedness has improved - he doesn't need glasses for now.
Bad News: His optic nerves are still underdeveloped and small. The opthalmologist couldn't find the results from the MRI we had done last year to see if all of his brain was in tact. But I am sure I talked to someone that told me his MRI was fine. I have to get a hold of those results. Its a pain because Denver Children's asks Wyatt's pediatriction to order the MRI and then he orders it at a hospital here in the Springs and then the tests get lost. Its happend with a few things now. I AM SURE I got the results over the phone though...maybe Memorial called me and just didn't forward them on?
Anyway, I asked her what that meant. She said that if the optic nerves don't grow it could cause vision loss. I said "so can it be corrected with glasses?". She said "no" and I could tell by her body language and her tone that it was serious.
She said the optic nerve is like a cable bewteen a tv and a dvd. If the cable isn't working, you don't get a picture. Its something we need to monitor. She wants to see him again in 6 months.
So...what am I saying? The Dr told me there was a chance Wyatt could go blind. BUT! The optic nerves are functioning fine right now and since he doesn't have any parts of his brain missing (if he did have a cleft in his brain we'd be in trouble)...we should remain positive.
I'm not getting worked up over it. Its stressful since no one understands why he has Pierre Robin and a cleft palate. No one can say for sure if the SHOX deletion is related to the Pierre Robin and cleft palate and no one really knows much about SHOX in general. Soooo...I think we're in new territory here for the specialists. There's no evidence to say he'll go blind or that he won't. If he ends up like me, he wont. But I didn't have PRS or a cleft...