Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Sunday, April 17, 2005

Reflux, Voice and Hair

After Steven was so upset about being teased about his hair and his voice last fall, I encouraged him always to tell me if something was upsetting him and that I would always try to see if there was anything we could do to help even those problems that seem insurmountable.

To this end, tomorrow morning I'm taking Steven to Children's Hospital in San Diego for an endoscopy and bronchoscopy, the endoscopy to look at his palate and vocal cords, also to look for signs of reflux in his esophagus, and the bronchoscopy to look for signs of reflux in his lungs.

Steven definitely suffered from reflux as an infant, before his palate was repaired he threw up constantly, it was my constant challenge to feed him to keep the pediatrician from following through on his threat to put in a gastrostomy tube.

But as he got older, the obvious signs of reflux disappeared. He's got reactive airway disease, kind of like asthma but not chronic enough to call it asthma, and he's had seven bouts with pneumonia, the most recent this last October.

The current theory is that he's got reflux, and the pneumonia is caused by the reflux. However, they've tested for reflux before and there was no definitive proof that he is refluxing. He's been on prilosec, zantac, and similar sorts of medicines off and on since infancy and we'd like to find out if he really needs to keep taking this stuff.

They're also looking at his palate and vocal cords on my request, despite eight years of speech therapy his voice continues to be high-pitched and hypernasal. To me his sweet voice is adorable, but as he rapidly approaches adolescence I think "cute" is not really what he's striving for.

With regards to Steven's hair, I took him to the Hair Club For Kids last February to be measured for a hairpiece, which was supposed to be ready in a month's time.

I called them after two months had elapsed and I think someone had dropped the ball and somehow it hadn't gotten ordered. They called last week to say the hair is ready, now we're waiting for an appointment to get the hairpiece. He's excited about it, I really hope it works out for him.

He'll be under a general anesthesia tomorrow for his procedure, but I expect all to go well. At Children's Hospital San Diego, they knock the kids out with gas and allow the parents to stay until the kids are asleep. After the gas takes effect they put the IV in, so that trauma won't be part of tomorrow's experience, thank God.

So if you're inclined, say a prayer or hold a positive thought for him tomorrow, that the procedure goes smoothly and that the results are good.

- Kathleen

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