My nine-year-old son is the center of my universe. This is the story of his childhood as it unfolds. Please read the first post, "Why I started this blog," to know more.

Friday, December 26, 2008

Off to gramps'

Tomorrow we leave for my son's first visit to his grandparents' house. We haven't visited my in-laws in years for a variety of reasons (some history and some serious lack of leave). But tomorrow, we're headed there for a quick, week-long trip. There are two shrines to visit and we'll hopefully spend the rest of our time hanging around the house and not being fed to bursting point by overenthusiastic relatives who believe that a way to demonstrate love is to stuff them full of food they don't like. :-P

We've scheduled Poppet's cryo for the 7th of Jan. And this time, I'm more terrified than ever about the anesthesia (I know, I know, I've mentioned it nearly every post related to my son's condition! I know I have to stop, but...)

Time for some praying - for good health and some calm.

Tuesday, December 23, 2008

Sonny & Me on Sunday shopping

On Sunday, Munchkin and I went shopping. First stop, the toy shop for a remote-controlled car. We got one that had it's own pit-stop 'home' and four extra tyres. The little tyke is thrilled.

Then we stopped at the optician to pick up a pair of nearly wraparound sunglasses for the post-cryo trip next Saturday.

Then the shoe store for a pair of floaters for the growing boy.

And then the stationery store: two notebooks ("Mom, promise you won't cover them - they're for rough notes - and brown is soooo boring!"), a tube of Fevicol, colored paper ("The colors are cool, Mom." - and I'm a sucker for paper, especially when it's colored.)

Oh yes, we managed to have some soda (yea, yea, I know I should be more "responsible" but well...) and popcorn. And then we were home and Munchkin zoomed the car around to his heart's content. All in all, a cool Sunday. :-)

Sunday, December 21, 2008

More treatment needed

The leakage has started again. We found out at the hospital yesterday. Munchkin was really irritated about keeping his eyes closed for them to be dilated. And somehow, ever since we left home, I was expecting bad news. We've had three exams in the past year, all of which indicated that my son's Coats was stable. I had wondered whether our good fortune would sustain.

This time, the exudates (old leakage) had reduced, but other blood vessels had swollen and have begun leaking. Amazing, how quickly things can change in four months. The good news is that these vessels are still a decent distance away from the macula, so by God's grace his vision remains unaffected.

I was in such a tizzy after having the Fundus photos taken that I agreed to leave the hospital without thinking. Poppet's father wanted to delay it until after we come back from his parents place - which would make it another two weeks. By that time, Poppet's school would have started again. I agreed at the time but something didn't seem right....anyway, now I'm hoping to fix procedure for next Wednesday. We leave for his grandparents' place on Saturday.

The whole general anesthesia thing still gives me the jitters. And there's so much in flux at the office. I have a hundred loose ends to tie up before I can go away without worrying about being fired while I'm away. :-P

More after we've organized everything. Hang in there, Munchkin. I have faith this will all work out.

Friday, December 19, 2008

Pre-eye exam jitters

Last Christmas, I was thrilled to post that my son's Coats Disease had stabilized after two rounds of cryo and laser. It was my best Christmas gift ever.
Now it's that time of the year again. And just like last year, the eye exam has been delayed twice for one reason or another. He's actually not past his due date but I usually start early because I work myself up into such a frenzy that I want to know the results as soon as possible. He's had two more eye exams (one in March, the other in August) and the doctor says there's been no fresh leakage. The exudates (existing leakage) are still there, though. The doctor says they'll get absorbed over time, or he can use laser.
The kid also has glasses now - very, very low power and in both eyes. He also hasn't complained of any floaters or other discomfort throughout the year.
This time, we've kept missing the doctor. he was away for an emergency surgery the first time and the next week, I clean forgot. The stress - a long story not involving my son and meant strictly for my other blog - is making me senile. We were all set for tomorrow, but it turns out the doctor's going to be in surgery again.
On Monday, the kid has his school's annual program. Tuesday's supposed to be a "bad day" for kids to be taken to a hospital; Wednesday the doctor's in surgery again; Thursday's Christmas, so the hospital OPD is closed; and Friday's surgery day again. Saturday we're leaving to visit my in-laws for a week. And then school re-opens again. And I am falling apart with the stress. It always builds up in the days running up the test.
A few days ago, a colleague mentioned my son's case to her eye doctor. He doesn't know my son's doctor but recommended someone else in the city. So that's another thing driving me crazy - do we stick by our doctor or get a third opinion (we've already had a second opinion - and it matched our doctor's).
Anyway, I'm sooo hoping the doctor will be able to spare some time to see my son tomorrow. Hopefully his assitant will be able to give me a clearer reply.
I honestly don't think I'll be able to go two weeks without knowing how my son is doing. The thing is, his condition has been stable since the last cryo in Oct 07 - which makes me wonder if all this is too good to be true.
I'm hoping and praying...God bless you little fellow. You're the best thing that ever happened to me.