Tuesday, January 19, 2010

Pediatric Glaucoma Awareness

Please help us raise awareness about pediatric glaucoma-take a minute to sign this petition:


Monday, January 11, 2010


His stool tests came back negative, so now I am left wondering what is up with these very loose stools (TMI for some I know). I guess we will have to start documenting the juice and milk intake to see if it is just too much juice or a lactose thing. If anyone out there in blogger land has any ideas I would appreciate them!

Friday, January 8, 2010

A good day for an eye exam :-)

*Don't you love the pink dinosaur hospital jammies!

Today our Gabie Xulu had his eye exam in TC. They had to put him under in order to get a good look at his eye and measure his pressure. Gabe was so good with all of it. We went up to TC the night before as he had to be at the hospital between 6:30 and 6:45am and with the snow here I didn't want to leave the house at 4am to get there on time. My friend and Gabe's Ayi, Melissa went up with us and we had dinner at Olive Garden and enjoyed the Marriott's hot tub before bed. It was an early morning and Gabe was a happy and charming man for the first hour or so. He enjoyed going on a couple of tours meeting all the nurses with our head nurse, but after he got the second round of eye drops, which stung and really really dilated his eyes, he got pretty quiet and cuddly. The nurse that pre-admitted us on the phone the other day had said that I could stay with him until he was asleep, but they took him before, and he was a little leery, but he enjoyed the ride on the gurney! The nurse even made race car noises for him :-) In no time the doctor was coming out to see us and he was able to give us this info...
1. His pressure is great! The surgery in China was good, although China's paperwork declared him "cured", he will never be "cured". His pressure may go up in the future, but he has no way of know when or if it will, so it will always have to be checked. If it does go up, we will use drops to lower it.
2. He does have vision loss as a result of 8 months of high pressure/cloudy eyes. We won't know exactly how much until he is older. He really doesn't have much of a nystagmus (wobbley eyes) which is really good.
3. His prescription is right on, so we don't have to get new glasses right now :-) Yay!
4. We will see doctor ever 6 months, and once per year they will do this type of check. They will have to do the under anesthesia check for 3-4 more years. We will meet again with the doctor in June to talk about preschool and the fall as he will probably need an IEP and some support in school for his vision loss.
5. He will always wear glasses - which I already knew :-)

So, we were very happy with this and we love our doctor. We had just gotten home this afternoon when the doctor called to checked to see how he was doing. Everyone at the hospital was so kind and caring and helped make him as comfortable as possible.
Gabe tolerated the anesthesia well, but coming out of it was tough. They brought him around without me there and that was baaaaaaad! I have never seen him so distraught! He couldn't focus on me and was clawing his way out of his clothes, off of(first the nurse when I walked in and then me)-kicking and screaming for about 15 minutes! They got him a warm blanket and when he started to calm down, then I did what every guilty mom does-promised to go buy him a new toy!! And hey it helped, so I was ok with it! After a little bit they gave him his discharge instructions-no alcohol, no major decision making, and not to be left alone and we were good to go!

And yes, we stopped at Toys R Us and he got a new tractor! ;-)

Tuesday, January 5, 2010

Starting eye drops tomorrow...

Tomorrow we begin giving Gabe eye drops in both eyes until his procedure on Friday am. I am sure this will be new territory for him, but as he has taken everything in stride, I pray that he will cooperate enough to make it easy on all of us!
I didn't think I would be this nervous about the whole thing. His eyes are such a non issue for us that it seems strange to be thinking of them this week and getting ready for this procedure. (For those of you who do not know, Gabe will be going under Anesthesia so that his ophthalmologist can get a pressure reading on his eyes and get a better idea of what his vision loss is.) I have never had one of my kids go 'under'-I worry about my sweet boy.
We appreciate everyone's prayers that he is not scared at any point (I should be with him right up until he is asleep and he will awake with me there), that the doctor can get a good look at his eyes and that the anesthesia doesn't give him any problems.

I am looking forward to getting a clearer picture of his vision loss and what this will mean as he begins school next year.