Doing Better!!!

Frankie is doing much better from his surgery!! It took him, and me, about 2 weeks to feel back to normal. He is playing all the time now, happy and going outside. The sun is not bothering him with his sunglasses on! It is nice to have our Frankie back!! And we are done with the eye drops! : )

Genetics

We took Frankie to his geneticist last week. We had been there 2 years ago and he
had one mutation on the OCA 1 gene, so he said he probably had that, but not
100% sure.
Today he told us that he does not have OCA 2, that was ruled out through genetic testing. He are going to test for 3 and 4 and revisit 1. I guess it is odd that only 1 mutation was found.
I just want to rule out HPS, Hermansky Pudlack Syndrome, characterized by bleeding tendencies and lung problems. He said the genetic testing for that was not too
accurate, only 10 % correct. But they can do a blood platelet test, but he
wasn't sure who even did that test.
I have found out from my kind online friends that there is a doctor in MN that will test the blood through electron microscopy. So when I get the results of OCA 3 and 4, I am going to ask for the HPS test, as well.
Frankie will have to have another blood draw, not looking forward to that after all the trauma from surgery! So we will wait a month or so. Poor little guy is so afraid of things now, I think he thinks everything is going to hurt him, like the surgery did! : (

Recovery

Last weekend was a hard recovery for Frankie. He woke up Saturday morning throwing up, but there was nothing in his stomach to throw up except some saliva. He did start eating slowly and drinking, so that seemed to help. He was still in a lot of pain over the weekend. When he finally walked a bit he was very wobbly and off balance. It did go away, I think due to him getting used to his "new" eyes.
We used a lot of Tyenol, and the eye ointment/drops have been hard! We went for his follow up appointment on Wednesday and the doctor said his eyes are healing nicely!!! The appointment was hard, Frankie was very afraid! But it is done, we do not need to go back until May!
It was a hard recovery for Frankie and for me to! To see your child in pain is one of the hardest things! I was shaking from it for days. I still feel sad, off, not quite happy. But we had a nice night out to dinner tonight.
He has been extremely light sensitive from the surgery too! We had blankets on the windows and the lights dimmed for a while. Today he was outside for a few minutes and didn't say his eyes hurt. So we are getting there!

Surgery - March 6th

Frankie had his surgery last Friday, March 6th. I was nervous, but then felt calmer as we were there! It got postponed from 8:30, to 10, 10:30 and finally 12! A long time for a small child to not eat! He did well waiting, we watched some TV, read books.
Then I suited up in the mask, surgical suit, hat. We dressed Curious George up too and then Frankie did! He was excited about it and liked the mask. We told him he was going to go into another room and smell strawberries, and he was excited! We got in there and laid him down and he was upset, crying though the mask, it sounded so odd! He went out pretty quick.
He was in surgery a good hour and a half, he had 6 muscles worked on. 2 to help his strabismus (crossed eyes) 2 to help his nystagmus (wiggly eyes) and the other 2 to help his null point/head tilt.
In recovery I was surprised that there was blood coming out of his eyes, so sad. He woke up and wanted me and I sat with him for a few hours before we went home. At one point he got the IV out and blood was spurting everywhere!
We got home in the later afternoon, my parents and Lizzy were surprised to see how bad his eyes looked. He just laid on me and slept or cried out in pain that his eyes were hurting, so sad!!!! He had a hard time sleeping, I wound up sleeping on his floor on the couch cushions!
He was in enough pain that I do not think I would do it again.

Pre-Surgery

I am finally able to catch up writing about Frankie's surgery, he had it a week ago! We stayed in most of the week before, so he wouldn't get a cold. So that was a long week. My parents came up the day before, that was so great and helpful.
I was sooo nervous leading up to surgery! And poor Frankie didn't even know it was coming!