Today was Eli's appt at the Ophthalmologist. It was alot of info and most not good, which at this point I feel as though is the norm. I seem to go into each appt hoping for good news, but expecting to not get it. The good news is we loved the doc. He was really good with Eli. He listened to Eli's FULL history and looked at pieces of the big picture. He then did a very full check, then dialated and then did another full check. The retina and optic nerve look good, BUT the left eye is severely farsighted and the right eye is severely near sighted. He has strabismus, which is where his eyes can't track well together, aren't aligned well together, and have a lack of coordination. Also his eyes twitch which is a neuro issue. If the issues aren't resolved he could either completely lose his sight or the weaker right eye could simply stop functioning and the left eye would take over. Focusing and depth perception and such will be hard for him. So the 1st thing we will try is glasses. The 2nd option is patches, the 3rd option is surgery. They fitted him for glasses today and they will be in before the week is over. Also at the 1st sign of retina or optic nerve degeneration he will be sending us to a specialist at the university of iowa in iowa city. We can't lose Eli's eyes as well. He said he wants to see Eli in office every 2 months unless we notice any problems. He will be followed very closely.
Now we figure out what system to do a full workup on next. I am going to be spending the rest of the week pulling every single piece of paper of Eli's file. I will get everything into a chronological order and I will be sending it out to every major children's hospital in the country. We've got to find help. We've got to find out what's going on.
Eli will be getting started with speech and OT tomorrow. The push is on for signing. We will also be meeting with a dear friend of mine who is an ASL interpreter. She is bringing a deaf friend and parent from the community to talk. She's a big advocate. We are so blessed to have so many amazing people in our life.
Eli is in a pretty good mood this morning. He's gotten to leave the house 2 days in a row and he's fascinated by being in public and looking around. He loves the christmas tree and all the pretty lights at home although he's not interested in touching any of it. He's most content on his carpet with his same few toys, his books, and his bag, tubes, and drain. His nurse, Paula, is on for most of the rest of the month so things will stay pretty consistent and stable in his little world.
I'm numb, I think. I can't quite tell if I'm just trying to convince myself that I'm numb because it seems safer and easier, or if I really am. I don't know what to do. I don't know where to turn for help. Heck our doctors don't know what to do next. They all call him the Eli puzzle. New doctors are told you aren't ready for Eli he's to complicated. Eli's specialists demand that nobody else touches him or sees him, they bend rules to be able to be the only one providing care for him. These are the situations you want to find yourself in. I never thought this would be how life would be. Every day I'm scared. Every doctors appt I'm scared. I hate being scared. I try sooo hard to be strong for Eli and my family but it's so hard.
More updates soon.