After much harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.
Showing posts with label glasses. Show all posts
Showing posts with label glasses. Show all posts
February 11, 2011
Research Study: 2nd Visit
We begin tomorrow morning!
We spent the day at Kennedy Krieger in Baltimore; Hannah taking cognitive and memory tests, while I filled out paperwork and parent surveys. One would think that a few hours of that would put Hannah to sleep. But she came out bouncy and cheerful.
We had a late lunch and then met with Dr. Capone and his research assistant. There was one more questionnaire, and a little review of the study requirements (keeping track of dosing and any side effects or illnesses). I thought they were going to administer the first dose while we were there. The original study paperwork said that Hannah would get the first dose and then she'd be monitored for 4 hours. I was expecting to spend another night in Baltimore! Apparently, some subjects get a bit nauseous as they adjust to the medication (or placebo...). But they lowered the initial dosing level, which has reduced the nausea. So we start tomorrow morning.
The first 2 weeks are a very small dose-- 0.38 ml twice a day--then it's doubled for the following 18 weeks. We should be done with the study on July 1st.
Today's visit was a little dull. I think I was expecting a little more fanfare or excitement, but they just handed over the bottle and medicine syringes and that was that.
The only really interesting part was when Hannah surprised Dr. Capone with her new facial hair.
(I think she looks like Rich Uncle Pennybags from Monopoly)
I think this picture is also the debut of her new "teen-like" glasses! She's been updating--hair styles, glasses, shoes/boots. I can usually influence her choices in clothing if I offer things like, "Would you like to wear this gray t-shirt, or the stylish green one?" She always goes for the "stylish" choice. Of course, it would be helpful if I could actually be sure I was leading her in the right direction...
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To read more about the research study, go here
April 10, 2009
Glasses/CPAP
Hannah has really been stringing out her bed time. Of course, if I wasn't so lame, she'd be in bed at a reasonable hour. My approach to bed time pretty much has been: If you're in your bed and you're not bothering me, then I'm fine with it. But Hannah has stretched that into: If I don't bug mom, she won't notice that I haven't gone to bed yet. And she's right.
So, tonight when I went in to say goodnight at 10:30 (time flies when you play on Facebook), hoping she had put herself to bed, she was happily reading. In bed. Yay!
I let her finish her page (who am I to stop a kid from reading??), and then gently took off her glasses.
I asked her if she could read without her glasses. "No. I can't."
I had her look at the book. "What does this say?"
"Flumm blek dee bon shushun beh." giggle giggle.
It's true, she cannot see much without her glasses. I guess I need give her some new vocabulary words like Focus and Blurry.
Soon she'll be asleep, then I can go in and rouse her to put on her CPAP. We're using the original mask. She's only gotten up once each night for the past three nights! I'm almost believing that she's going to get the hang of it! She wakes up when the sun comes up, turns off the machine and takes off her mask. She hangs it up nicely on the bedpost, and then goes back to sleep again for another hour or two. She's technically following the rules: Mask may be removed if the sun is up.
Thanks for all your encouragement. It's helping me, so I can help her.
So, tonight when I went in to say goodnight at 10:30 (time flies when you play on Facebook), hoping she had put herself to bed, she was happily reading. In bed. Yay!
I let her finish her page (who am I to stop a kid from reading??), and then gently took off her glasses.
I asked her if she could read without her glasses. "No. I can't."
I had her look at the book. "What does this say?"
"Flumm blek dee bon shushun beh." giggle giggle.
It's true, she cannot see much without her glasses. I guess I need give her some new vocabulary words like Focus and Blurry.
Soon she'll be asleep, then I can go in and rouse her to put on her CPAP. We're using the original mask. She's only gotten up once each night for the past three nights! I'm almost believing that she's going to get the hang of it! She wakes up when the sun comes up, turns off the machine and takes off her mask. She hangs it up nicely on the bedpost, and then goes back to sleep again for another hour or two. She's technically following the rules: Mask may be removed if the sun is up.
Thanks for all your encouragement. It's helping me, so I can help her.
January 31, 2009
New Specs4Us
They arrived on Thursday but it took me until tonight to snap a picture. Forgive the cookie crumb face, please. Yes, Nutter Butters. No, they were not tainted.
She is gradually adjusting to the bifocals. She noticed right away that she could read better, but she doesn't always use the upper lens as much as she should. She also was sneaky and switched back to her old glasses twice today. I think we need to go back and get the ears adjusted, they may be too tight.
You can see that the bridge of the frame is much lower than on a regular frame. The temples have also been lowered. This keeps the lens up higher on the face, rather than dropping down. Individuals with Down syndrome have low set ears. Regular frames have the temples at the top of the lens. With low ears, regular glasses automatically are lower than they should be for optimal viewing. Add in the typically flatter bridge of the nose and you can get an idea of how difficult it is to get glasses to fit. They just droop.
If glasses droop down, then the first thing a kid with low muscle tone does is tilt their head back so they can see through their glasses. Well, I think the first thing anyone does would be to tilt back their head. But if you had low tone, when you tilt your head back, your jaw will jut out and drop open. If your jaw is open, your tongue is relaxed (try it and feel what your tongue does). A tongue that is relaxed cannot produce clear speech. Articulation is virtually impossible. Try talking with a relaxed tongue and a weak jaw. It doesn't work.
I can see that I'm getting off on a tangent--one of my pet peeves is the notion that everyone with Down syndrome has an enlarged tongue. I'll have to save it for a post of its own! Let me just say that individuals with Down syndrome are not born with a large floppy tongue. It's not caused by glasses frames either...but ill fitting frames can contribute.
And now you know more about glasses and tongues than you did before. Aren't you much happier and enlightened with your new knowledge? (I wish there was a font that was called "Sarcasm". Then everyone could automatically tell that I'm joking around. At least those of you who don't personally know me, who can't read the inflection of my typing.)
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