Wednesday, July 27, 2011

Long overdue!!

As always, things have been busy in our household and time seems to whiz by. Sumana had her sleep study earlier last week. Let me just say that the novelty of the 'thing' has long worn off. I had to DRAGGGG myself there, knowing that I wasn't going to get much sleep. Unfortunately, neither one of us got much sleep. Miss Amy got Sumana all hooked up to the sensors and was ready to turn out the lights right around 10:00, however, nature called and she had to unhook Sumana, let her 'do her thing' and then hook her up again, re-checking everything to make sure the wires were all working. It was almost 10:30 by the time we turned out the lights (about an hour later than her bedtime). Then at 1:30 a.m. we were up again, this time diarrhea was the culprit and then again at 5:45, (wake up call was at 6:15!!) UGH!!! She slept most of the way home, and I slept 4 hours once I got home. We'll know next week if they were able to get any profitable information from the study.

The later part of the week was Kids Kamp at LeTourneau. Sumana had a FANTASTIC time. Miss Emily was back again (she's been a counselor in training for 2 years, now she was promoted to THE counselor for Sumana's cabin). The heat was terrible and the wind was kicking up such big waves, the waterfront had to be closed. However, Sumana and Emily took to the slip and slide and had a blast. We borrowed an adult stroller for Sumana this year. She was rather mortified at using a 'stroller' so even though it was hot and there were a lot of hills, she hoofed it by herself all over the camp. She rarely used the stroller. (Maybe a little self-consciousness is good for her . . . it meant exercise in this case!!!)

This week we visited Great Grandma Williams at her beautiful new apartment and went to see Dr. Voter afterwards. Sumana's lungs continue to get stronger, in spite of her stinky attitude. I told the doctor that she 'grudgingly, but faithfully uses her cough assist machine.' Dr. Voter got Sumana to admit that the cough assist is helping her to feel better. Dr. Voter is awesome at use child psychology to its best advantage with Sumana. It's wonderful to see her help Sumana take responsibility for her overall health.

This week brings tests and doctors' appointments for ME, for once. Not that I'm proud of that, but it is strange to schedule MY appointments around the KIDS' schedules! I saw a neurologist Tuesday, my PA today, I have an EEG tomorrow, then an MRI and blood work on Friday. Woo-hoo! That's the way to get 'er done! They're trying to find an explanation for my speech issues and short term memory loss. They think it might be a delayed reaction from my rollover accident in February. The timing seems to fit, but that was over 5 months ago! Anyway, I follow up with the neurologist in a couple months. Hopefully things will resolve themselves as time goes on.

Saturday, July 2, 2011

You need an update!

I can't believe how the time flies. I apologize for not posting sooner. Sumana is doing really well, but is trying all kinds of new things. Once I find the cord to download pictures from my camera, I'll share a visual of her latest exploits.

First of all, she is getting nightly eyedrops to keep her left eye dilated and basically useless. This is to force her weaker, right eye to engage and hopefully improve its vision. The bummer I've encountered, though, is that she can't read AT ALL with this current regime. I called Dr. Harvey and he commented that he and I have differing and conflicting goals for Sumana. I need her to continue to work on her reading, he needs her to improve her distance vision from 6-10 feet. He suggested reading glasses to help us both reach our goals for Sumana.

Sumana now uses 2.0+ reading glasses for reading in both books and on the computer. I never have to ask her to put them on. They must make enough difference that she knows to wear them when doing close-up work. How cool is that? To work on her distance vision, each day I write spelling words and math problems on the white board and place it at one end of our kitchen. She sits at the far end of the kitchen and copies the things I've written for her. She knows this is for the benefit of her vision, but mom is happy that she's also reviewing spelling, reading and math while working on her vision! (I'm so sneaky!!)

For those of you who have kids with vision issues, check out this website: I met a family at the homeschool convention in Harrisburg, PA, who recommended Dr. Bowen and his website. He also has videos on He is a neurological optometrist and deals with alot of crazy vision problems. Quite often, he uses prism glasses to help his patients. Dr. Harvey has mentioned this treatment for Sumana once her vision improvement plateaus.

July promises to be a busy one with appointments. Mr. Ray will check out her orthotic braces soon and let us know if Sumana needs new ones. She has her yearly sleep study and then goes right to 4 days of Kids' Camp at LeTourneau. She sees Dr. Harvey again after that.

Another new addition for the summer is Aqua-therapy with Mr. Darryl from the Happiness House. (He works on Occupational Therapy with Sumana). Since I work Monday afternoons, Daddy takes Sumana to therapy. On Thursdays, she has her regular PT with Miss Becca. She's growing like crazy. I'll upload new pictures as soon as I can.

P.S. If that website didn't link up right, here it is again: