Sure, CF...everyone knows that my son and daughter have it. Well, those that know us anyways. With this disease, it's silent. No one knows unless you tell them.
Hunter was diagnosed at 3 months with CF but then he was diagnosed with something called Duanes Syndrome as well.
Duanes Syndrome affects the eyes. The muscles in the eye do not move the way that they should. This is occurring in his left eye. Noticed this when he was a baby, but was always told that it is normal for his eyes. They said that since he was still so young, his body needed to basically grown into itself. Well, it continued to happen. Hunter was in therapies, so many until the age of 3. Speech therapy, Developmental Therapy, and Sensory Therapy. The therapies seemed to be working, so I thought.
The speech therapy was great for him. He still has a hard time pronouncing certain letters in a word, but what kid doesn't? Or adult for that matter? Homeschooling gives me that extra time with him to work with him.
He still has sensory issues. BIG TIME. I have never seen a child scream and run when he sees a fly. Not just a little scream, SCREAMING, like something terrible has happened. We were in a restaraunt one night, the server sat us at a table by the window. Big mistake. The whole restaraunt turned and looked--he was screaming so bad we had to change tables. Is this normal? Will he ever get passed this? He is starting to affect Ren now. It's hard for because just to get in the van is a chore in itself anymore. God forbid there be a fly or mosquito in there, all hell breaks loose. No one can really understand the extent of this unless they see him going through it.
So, back to the Duanes Syndrome. Most people look at it as if it's lazy eye, but it's much worse than that. He has it in his left eye to where the muscles are so tight that when he looks to the right and up, his eye shoots up. He has to compensate for reading, playing, watching tv and position his body so. He's doing well with it to this point, but if it gets a lot worse, he will need surgery. Having surgery on the eye scares me. What if something goes wrong? What if he's worse than before it? I don't know, all these thoughts run through my mind.
His original eye Dr. last year wanted to do surgery on him that following week. We went to Childrens Hospital where they get their CF care and the Dr. there said it wasn't necessary at this point. It would be more cosmetic than anything. We see his eye getting worse when he goes through a growth spurt. Thank God for second opinions and a mothers gut instinct.
We have this Friday another routine check-up up at Childrens for Hunters Duane Syndrome. I'm praying all goes well and ask for prayers too.