Ophthalmologist
It's only a little after noon, and I'm exhausted. I have been fighting a sinus infection for three weeks now, and I suspect the poor quality of my sleep is slowly killing me. I refuse to take antibiotics unless I am seriously ill, as my immune system is strong and they throw off my body chemistry. I just hope I feel better soon.
Brian, Erik, and I went to the ophthalmologist this morning bright and early to have Erik's eyes dilated and checked. Of course, they looked completely perfect on exam, except for the prominent epicanthal folds so common in syndromes like ours. This extra skin sometimes interferes with focusing on something in front of his nose, but other than that, he's golden. The main difficulty we have is simply poor muscle tone, which does affect his ability to focus on objects to a minor degree at this point. We return to the ophthalmologist in six to twelve months. The ophthlamologist found it humorous that I am one of the people who transcribes his reports and correspondence. He said he would dictate our family a letter, and I could take it home and type it for myself. Actually, he found this a lot funnier than I did. We thought he was slightly annoying but seemed generally fairly competent. He seemed to know much less about WS than I had hoped. For instance, he asked why I thought Erik had poor muscle tone and dismissed our concerns about Erik's depth perception, a common problem in WS. Many physicians quickly dismiss our concerns about problems common with WS that Erik seems to clearly demonstrate. We mentioned his difficulty negotiating stairs, and he said it was because Erik wore leg braces. Aggravating!
The next step will be an echocardiogram. This is something I have been dreading but wish to put behind us this year. This will tell us if the slight narrowing in one of his large arteries has worsened or if anything else has shown itself in the last year. These scans are seriously the scariest things I have ever experienced. Ever. I am also not a huge fan of putting my baby under sedation, especially with possible cardiovascular problems. This will likely take place in the next three months. It is my hope that we can avoid cardiovascular surgery completely. So far, so good!
After the eye doctor today, Erik and I headed to the boonies for hippotherapy. He saw his horse through the observation window and yelled, "Go, Foxy!" This made one of the volunteers laugh. He did well, although he was as tired as I am, and he had a very good workout atop Foxy Horse and in the therapy room afterwards. I happened upon a very intriguing salad dressing recipe in an ancient Oprah magazine while I waited for Erik. I'll post it if it's any good.
Brian, Erik, and I went to the ophthalmologist this morning bright and early to have Erik's eyes dilated and checked. Of course, they looked completely perfect on exam, except for the prominent epicanthal folds so common in syndromes like ours. This extra skin sometimes interferes with focusing on something in front of his nose, but other than that, he's golden. The main difficulty we have is simply poor muscle tone, which does affect his ability to focus on objects to a minor degree at this point. We return to the ophthalmologist in six to twelve months. The ophthlamologist found it humorous that I am one of the people who transcribes his reports and correspondence. He said he would dictate our family a letter, and I could take it home and type it for myself. Actually, he found this a lot funnier than I did. We thought he was slightly annoying but seemed generally fairly competent. He seemed to know much less about WS than I had hoped. For instance, he asked why I thought Erik had poor muscle tone and dismissed our concerns about Erik's depth perception, a common problem in WS. Many physicians quickly dismiss our concerns about problems common with WS that Erik seems to clearly demonstrate. We mentioned his difficulty negotiating stairs, and he said it was because Erik wore leg braces. Aggravating!
The next step will be an echocardiogram. This is something I have been dreading but wish to put behind us this year. This will tell us if the slight narrowing in one of his large arteries has worsened or if anything else has shown itself in the last year. These scans are seriously the scariest things I have ever experienced. Ever. I am also not a huge fan of putting my baby under sedation, especially with possible cardiovascular problems. This will likely take place in the next three months. It is my hope that we can avoid cardiovascular surgery completely. So far, so good!
After the eye doctor today, Erik and I headed to the boonies for hippotherapy. He saw his horse through the observation window and yelled, "Go, Foxy!" This made one of the volunteers laugh. He did well, although he was as tired as I am, and he had a very good workout atop Foxy Horse and in the therapy room afterwards. I happened upon a very intriguing salad dressing recipe in an ancient Oprah magazine while I waited for Erik. I'll post it if it's any good.
posted by Nancy at 12:07 PM
2 Comments:
I forgot that when you're sick and you have a little one, everything is 10 times worse until last week when I was run down with a cold. I hope you can just curl up and sleep all weekend...
Prayers with you on the echo... always good thoughts for good results. I can just picture you rolling your eyes at your opthomologist... men always think they're funnier when they're not ;)
Huhhh, you had a good visit, too!!! Congratulations!!!! :)
I hope your sinus infection went away!
About stairs: one of my ws-moms in Hungary said that she asked from a few bigger ws-kid (10-15 yrs old) that why they are not too familiar with the stairs. The answer was so simple: they couldn't see them!!! You know our kids have problem with spatial perception.... and they just can't find out that what they see in front of them is only a line or what is the depth of it.... Szabi goes down the stairs just like a blind man....he is palpating the stairs with his feet :DDDDD
Have a beautiful weekend!!!
Love, Kati
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