Sunday, August 28, 2011

Finally, some FUN!!

Sumana enjoyed a week at camp in July, but other than that not fun much has happened this summer. I was tired enough and just not myself so staying at home always sounded good to me.

After an MRI, EEG, sleep study and lots of blood work a friend suggested a trip to the chiropractor. That was the ticket. I had a vertebra pressing on my skull and limiting the flow of cerebral-spinal flow. As soon as my neck was adjusted I had a major head rush and immediately my vision was clear and colors looked bright again. Really strange. But, I'm really thankful. I go back to the chiropractor every couple of weeks for awhile to make sure it's fixed for good.

Sumana got good news from her sleep study. She moved oxygen and CO2 better this year which indicates that her lungs are stronger. She also saw the eye doctor again. Her vision has plateau-ed at 20/50 so that means that she'll start formal vision therapy in September. I'll have to keep you posted on what that entails.

So, back to FUN . . . Sumana and I finally made it to the George Eastman house in Rochester. It was just beautiful! Sumana is very interested in the 1890s to early 1900s . . . Edison, Ford, Eastman, etc, etc. We also visited Sonnenberg in Canandaigua. There was a very impressive art show. We spent most of our time in the mansion and the gardens.

Then, this week we took a trip to the Great New York State Fair! Sumana didn't remember going to the Fair 6 or 7 years ago, so it was truly a new experience for her. We watched the crazy high dive show, attended a circus, watched soap being made, and she ate a corn dog! What more could a girl ask for??

We started homeschooling last week and it's been a real pleasure for both of us. I 'gave in' and purchased hands-on activities that I knew she would enjoy. One of the items is a timeline. I can see already that this will help her place her history and hopefully remember it better.

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:

Wednesday, June 15, 2011

What an eye doctor!

I must admit how pleasantly surprised I am with Sumana's new eye doctor, Dr. Paul Harvey. I have to really concentrate and put on my 'SAT' vocabulary ears when I listen to him. Even then, I need to ask for clarification, but who cares??? He's taking time to figure out Sumana's eyes and give us some direction to work with.

Sumana's eyes improved last time from 20/80 to 20/60. Today's exam wasn't very remarkable: she's solidly at 20/50. However, Dr. Harvey was able to diagnose some more issues. He has already learned that Sumana has blind spots in her field of vision and she has NO depth perception. Today he was able to determine that at close range Sumana sees double, then as an object moves away, from 4ft to 8ft, her right eye shuts completely off. Then beyond 8 feet it'll come back and try to work with the other eye. Isn't that amazing?

Our next plan of action is to apply eye drops every night at bedtime. This will relax her good eye and MAKE her weaker eye work. We will still continue to patch periodically throughout the day to give her an even greater workout. She will be re-evaluated in 6 weeks and then he'll do more tests and give us some exercises depending on his findings. Dr. Harvey is hopeful that we can correct some of these visual problems AND (get this . .) possibly DEVELOP some depth perception. But, of course, that's WAYYYY down the road. I'm just sooooo thankful to have a local eye doctor who is willing to stick with Sumana and try out different things. What a huge blessing.

Wednesday, June 1, 2011

Crazy Good News!

Dr. Sanders measured Sumana's x-rays yesterday. Her curve improved from 28 degrees to 18 degrees! (The curve was over 50 degees when we started with the VEPTR surgeries). He also checked her skeletal age by examining an x-ray of her hand. At the most, he thinks she has a year of growth left.

So, because of the improvement in her curve, the fact that she would need brand new rods at the next surgery and her remaining expected growth, he recommended that we leave her alone and let her GROW! Woo-hoo! That means no surgery in 4 to 6 months . . . only a follow up appointment in November. Is that awesome news, or what?? Sumana is so excited!

Also, Dr. Sanders and Dr. Rubery are forming a nationwide study of kids with early onset scoliosis and their treatment. Sumana is 'Number 33' in the study. So some day if you're reading up on the treatment of kids with scoliosis and you come across 'subject 33' you'll know it's Sumana! I'm really pleased to have her participate in the study. It will outline her history and treatment and the resulting effects as she grows. Pretty cool, huh?!!

Monday, May 30, 2011

Recovery Report

Sumana has recovered so well from her latest surgery. Dr. Sanders excised some of the scar tissue and the new scar looks so good! She had the crazy itching for a couple weeks as usual, but no complications. We go for her follow up appointment with Dr. Sanders tomorrow (Tuesday). After her appointment we're going shopping for clothes. This kid is growing like crazy! She's outgrown children's sizes so our goal is to figure out what size she wears in junior/misses clothes.

We're winding down with school as well. In spite of all the ups and downs and interruptions, we should be done in 2-3 weeks. Yea! Sumana is finishing up her standardized testing this week.

I need to cut this short. I'll try and update later. We're off to the Memorial Day parade.

Wednesday, April 27, 2011

The Flood of 2011

Wow. Check out the pics of our flooding. This has happened 5 or 6 times in the last 2 weeks, each time is a little worse because the ground is so saturated and the rivers so swollen. We just noticed a little water in our basement. Others have had it much worse. We've lived here 19 years and I have NEVER, EVER seen anything like it.

I'll have to get pics from up above our house. The pond is overflowing with all the streams coming through. Andrew and I counted 6 new independent streams coming down the hill. Yikes! To top everything off, we had a full-fledge tornado WARNING tonight. We didn't have any trouble here. I guess I'll have to check to see what was reported in the wider area.

Here's Jeffrey checking out the drainage pipe that goes from west to east. You can see the spray of brown dirt toward the bottom of the pic . . .sorry it's so blurry!

This is our neighbor's overworked drainage pipe!