We had the much anticipated Geneticist follow up appointment yesterday to go over all of Yuri's labs and MRI. We were so hoping for answers. Everything came back normal except that his pituitary gland is underdeveloped and so are his optic nerves. He has all but one of the symptoms of Septo-optic dysplaysia. However SOD wouldn't account for all of his symptoms and most importantly his mental delay.
So now we see more specialist. Because of the anomalies of his eyes he does have poor vision we just don't now how poor. We are going to the Ophthalmologist tomorrow a fact I excitedly told the Doc but he said there is nothing that can help this type of vision loss.
We also ran two more labs, one is an expensive long shot and the other won't tell us anything really. Josh and I are just grasping at anything for answers, for a little peace.
Yuri was his normal self for the entire visit yesterday and he had everyone's attention because he was so loud and unhappy. When we were trying to talk to the doctor we could barely hear him over Yuri's noise. The nurse made a comment about it and Josh said this is normal from, 7:30am to about 11:30pm he is constant motion and noise, if he isn't making the noise himself he is making someone or something else make the noise. I was almost in tears at the 'no' news and the nurse understood.
It felt so good to have someone really understand how hard Yuri is. She walked us down to the lab and she told me that she has been doing 'this' a long time and something has to be going on with Yuri that can be fixed or helped.
Yuri bangs his head on this in order to push the button to make it light up and play music.
This was the first toy he ever played with and didn't immediately throw.
He is cute!
This was before he took all the letters off the fridge.
Remember how hard the orphanage visits were for us. How exhausting? We thought it was because the boys didn't see us as their primary care givers and we were still in the orphanage. I now realize it was just Yuri. I would never try to just sit and play with Yuri for 2 hours right now, it would be miserable for both of us. But yet that is what we were doing everyday sometimes twice a day. Anyway that was just a revelation for me. I'm off to make more phone calls.