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!

Monday, April 18, 2011

Under 11 hours!!

It's a new record! It was just over 10 1/2 hours door to door today AND, yes, Sumana did have surgery! She didn't go in til 11:10, was out by 1:30 and on the road home by 4:30!

Her lungs sounded pretty good at 9:30, but they wanted her to have another nebulizer treatment before surgery. Dr. Sanders looked at her x-rays again and he found a way to eek out another 2-3 cm on her current rods, so he changed his plan to a simple expansion, instead of the more involved rod replacement.

Everything went well and aside from the usual pain, Sumana seems to be doing well and is very happy to be home!

Saturday, April 16, 2011


Sumana saw her primary doctor Thursday and received pretty good news. Her lungs sounded clearer than they had a week earlier. We're still a little unsure about surgery on Monday. We are supposed to arrive at the hospital at 8:30. The anesthesiologist will have the final say whether the surgery will happen or not.

In the meantime we have Sumana taking regular albuterol nebulizer treatments and playing Wii Fit or treadmill to try to clear her lungs. Please pray that she is all clear on Monday. I'd love to see her in new rods . . . she's growing so fast!!

I'll keep you posted!!

Friday, April 8, 2011

Pneumonia . . . .:-(

So sad. Sumana went from a cold on Wednesday (we did see the doctor and got her started on a steriod) to bronchitis (took her to the ER for shortness of breath) to bacterial pneumonia today (back to her doctor's office). Her O2 sats were around 93 yesterday and today. If they get below 89 they would admit her to keep her on oxygen. Those numbers are too close for my comfort!! The poor kid! She is acting okay, but the coughing really hurts her chest and ears.

The doctor doesn't think that she'll be able to go ahead with her April 18th surgery. I'm afraid she's right, but I don't even want to consider what that might mean. Dr. Sanders was booking into July a month ago, so unless he can squeeze her in somewhere, we'll be looking at August at the earliest. As much as I'd like to get the new rods in her back, I really don't want to take a chance with her weakened lungs. The whole ventilator experience is a once-in-a-life-time thing as far as I'm concerned. Been there, done that . . .don't wanna do it again!

So, please pray for healing and wisdom for us. I'll contact Dr. Sanders office next week and see what they say.

Here's a quick, funny story: After her doctor appointment we went out for lunch. She sneezed so hard and unexpectedly, that she knocked over her glass of ice water. It dumped across the table and into my lap!!! Where is the video camera when you need it? She was sooooo startled (me, too!). It was sooooooo funny! Wish you could have witnessed it!

Wednesday, April 6, 2011


I must say I'm pretty close to speechless . . . and that doesn't happen very often! Sumana saw the developmental eye doctor yesterday. I looked back at older posts and she has tested as poorly as 20/70 in her right eye. Yesterday she 'almost' made it to 20/50. I think I've mentioned how much she has resisted patching her right eye. She was supposed to be patching her eye 2-3 HOURS a day. In reality she has been doing it about 30 minutes a day. . . if that. When we went to the doctor yesterday I didn't expect to see any improvement, in fact I expected to have to accept the fact that she was nearly blind in one eye.

I can't even begin to express how stunned I was to hear that there had actually been improvement in her right eye. The doctor is not even close to being ready to talk about corrective lenses or visually adapted reading materials. He wants to see her get to 20/30 and THEN he'll have her start vision therapy (more exercises!!) and THEN maybe talk about corrective lenses.

Because Sumana has been so resistant to patching, the doctor explained WHY she needs to do this. He explained that to drive, you need to have a certain level of vision. He told her that it is only for 10 weeks and if she is faithful, he won't have to prescribe eye drops (which she hates). Once her right eye is strong enough, he told her that he can help her train her eyes to work together as a team. (They probably have never done that before). When they are working together correctly, she won't have the blurriness and double vision (that's from the left, dominant eye taking over for the right eye). I think the doctor got through to her. She only has to patch her eye two hours a day and it can be for 20 minute intervals throughout the day.

I am so relieved! I have been making plans to buy a Nook and subscribing to a large public library to try to get reading materials for Sumana that have a larger font. I've been concerned about all of her school subjects and the small size of the font that is used as the kids advance. The doctor told me how to make a typoscope for Sumana. This will help isolate one or two lines of reading material, and he says that's all the assistance she needs at this point. He showed me the type size that she can read and it is the size of most of her books or even smaller. Her problem is with crowding and with the typoscope, that will help eliminate that problem. How cool is that??

Anyway, please be in prayer for our girl. Sumana picked up a really bad cold this week and it's gone to her chest. She doesn't have a fever yet, but the albuterol and cough assist aren't helping. We'll be off to the doctor's today or tomorrow. Sigh . . . She's pretty concerned because she is anxiously awaiting her surgery April 18th and doesn't want anything to get in the way of that! (What a trooper!!)

Sunday, April 3, 2011

NC was a GREAT break!!

Sumana, Andrew and I had a FANTASTIC time visiting Papa and Nana in North Carolina. It was a fun, relaxing time and just what the doctor ordered! The weather was fantastic . . . no rain, lots of sun and it even hit 80 at the beach one day. Woo-hoo!

When we got back (after driving through snow . . . ugh!), Sumana had her pre-op appointment. She's all set for surgery April 18th. I still need to verify that Dr. Sanders is swapping out her rods for new ones. He was not at the pre-op appointment. Last time we saw him he planned to give her longer rods. The way she's growing, she needs them!!

Friday, March 11, 2011

NC here we come!

It has been probably one of the most stressful weeks of my life. Without going into detail, we had to ask to have our foster daughter removed from our home. It is always difficult to be forced to choose between your own children and another who needs you. However, in reality there is no choice. We always have to protect our own kids' best interest. Please pray for Jade, because this transition will be very difficult for her. It will be a good chance for her to really see that Jesus is the only true constant in her life. It also is a good chance for me to get out of the way and watch God work.

I really need a break, so we're heading to North Carolina a bit earlier than planned. I'm really thankful my parents are flexible and that I have good friends at the libary willing to cover for me while I escape. Sumana and Andrew will go with me. We're all looking forward to a change of pace. Gretchen will spend the week in Arizona with one of her best friends. Jeffrey and Greig both have to work, but seem to be looking forward to some peace and quiet!

I'll try to get some fun pictures to share when we get back. There are always lots of wonderful photo ops!!

Sunday, March 6, 2011

My Radar

Huh . . . so much has been going on the last few months it hasn't even registered on my radar that Sumana has surgery coming up. April 18th is not that far away. I guess it's a really good thing that I've practically forgotten about it. That shows that Sumana is doing well and I'm not anxiously awaiting a needed surgery. This one is definitely needed, but I guess I don't see the physical signs in Sumana that make me wish a surgery date would hurry up and get here.

Sumana has been very healthy this winter season. I think she's had two colds, but got over both with relative ease. (I was recounting to someone at church today about how she used to catch every little cough that went around and it would immediately turn to pneumonia). She has been busy with AWANA, birthday parties for friends, an AWANA girls' overnight, etc., etc. It is such a relief to be able to let her go to these events and not worry about her catching something.

This next surgery will replace both VEPTR rods. After the last surgery, Dr. Sanders told us that she has outgrown both rods. Sumana has her pre-op March 23 and we're hoping to go on vacation the 24th (to my parents' in NC). Then it'll be just a hop, skip and a jump and she'll be up for surgery. It'll be nice to get this one out of the way before summer.

Tuesday, March 1, 2011

Greig's new van!

So, I think we’re finally done car shopping. “Oh, what a relief . . . it is!” I got the 2007 Sienna about 2 weeks ago and today Greig brought home a 2002 Sienna. Supposedly both models are the ‘base’ models, but Greig has a bunch of goodies that I don’t have. (I’m not bitter, though!) Greig has dual power doors, an automatic hatch opener, daytime running lights and privacy glass. Woo-hoo! La-dee-dah! I have 75K fewer miles . . .so I guess I’ll be very happy with that!

I am very thankful, though. As awful as it is to lose two vehicles in about 2 weeks, none of us were seriously injured. AND, we got really good settlements for our old, high-mileage cars . . . much better than we ever could have sold them for. The really good news, too, is that we only have one car payment. I really see these circumstances as gifts from God. It’s kind of funny, too. We now have 3 Toyota vehicles out of 4. We just need to convert Gretchen!! I hope this means we'll be visiting our friendly mechanics less frequently!!

I didn't look at my earlier posts, but it's worth mentioning again. The van doors are so light that Sumana can open and close them by herself. Yea!

Monday, February 21, 2011


Well, with minimal sweat and tears, we have a new van. It is not a twin of my beloved Astro, but it is a good van, nonetheless. We found a 2007 Toyota Sienna in Greece (NY!). It only had 27,000 on it when we got it. It is their base model, but is more than adequate to meet our needs. The doors are light enough that Sumana can open and close them herself. It also has 'quad seating' so Sumana has her very own seat. I like the way she fits in the seat MUCH better than in the Astro.
The Astro, by the way, was totalled. The last pictures I posted didn't look too bad, so I asked Greig to take some more pictures. I've posted one that show fairly well how the roof was smooshed down nearly to the back of the driver's seat. I guess that's why my head and neck hurt so much. Probably any more 'smooshing' and my neck would have broken. Yikes! A very sobering thought.

I'm now working a three-month job at the Red Jacket Community Library in Manchester, NY. I had to work on Saturday, so despite the horrible weather I drove to and from work. I wanted to turn around many times, but I kept plugging along. Even though it took nearly 1 hour (normally a 30 minute trip), I made it safe and sound. By the time I reached home, I felt very good about our new van. It is just a standard front wheel drive, nothing fancy . . . but it handled very well in the snow and wind.

Our latest 'drama' is that Greig was rear-ended yesterday. It wasn't his fault, but it makes another headache to deal with. He so graciously handled my mishap, I wish I could help him with this one. However, he knows all the collision people, so he'll be in a good position to work through this problem. Since his van is 14 years old, it will probably be totalled with just the rear hatch damage. He definitely has some whip lash to deal with, too. Please pray that we can work through this as smoothly as we did my incident.
Also, keep Sumana in prayer. She is very stubborn about wearing her eye patch. I know it's because she can't see much . . . but she needs to try to strengthen the weak eye.

Thursday, February 10, 2011

My poor Big Green Van

This post has nothing to do with Sumana, except that 'her' vehicle was involved. I was on my way to get Jade last night from work and hit a huge section of 8 inch deep, packed snow. I was going slower than usual, but still way to fast for what I encountered. Long story short, I did a 180, went over a steep bank, rolled over completely and landed in 4 feet of snow. Gavin was with me and, thankfully, was well restrained in his car seat.
The roof was ripped down the center and Gavin and I were covered in snow, but no broken glass. We were able to get right out of the vehicle. We got checked out at the hospital and were home by midnight. No cuts, scrapes or broken bones. Gavin seems 100%, I'm just very bruised from the seat belt. I'm so thankful for God's protection. The doctor called it a 'near death experience'. Wow. It all happened so fast, I still haven't processed that part of the event. I'll keep you posted on what happens as far as our transportation for Sumana. She doesn't have many appointments for the next couple of months, so except for my work and Jade's work and appointments, we should be ok for a while.

Sunday, February 6, 2011

Thanks for the encouragement!

I just wanted to post quickly to say 'thank you'. I had hoped not to sound too discouraged in my last post, but I guess it came across that way. I know we've done all we could and done what we thought was best for Sumana all along. It is frustrating to find ourselves at this point. However, it is good to remember that we're finding this out now when she's twelve instead of in five or six years.

Also, there is plenty of hope for treatment, even if her eyes do not improve through patching. I guess the good news is that we can still help her progress in reading. I actually am looking into getting an e-reader for Sumana to enlarge the print of books that are the next step 'up' from where she's at now. At any rate, I'll keep you updated as things happen. Thanks, again, for your encouragement!

Tuesday, February 1, 2011


"If I had seen her when she was 4 or 5, I probably could have helped her. I'll still try, but I'm not very optimistic." That's pretty close to a quote from Sumana's new eye doctor. UUGGGGGHHHH!!! Hello . . . .!!! Sumana had her first eye exam within 4 months of coming into our home and we were sent to a pediatric eye doctor. Like I ranted in my last post, I thought that I was doing what was best for her . . . taking her to a specialist. Now, 6 1/2 years later we find out that something more could have been done. I know God has used circumstances and different doctors and friends to lead us on the paths that we have taken for Sumana thus far, but when you hear what we found out today, I think you'll feel my frustration.

Sumana had test done today that she has NEVER had done before. I guess some of the tests are usually only done on adults, but none-the-less, as she completed each one, the doctor was able to get a much clearer view (pun intended), of how Sumana's eyes function. First of all, on a standard 20/20 scale, her right eye tested a bit better than last Friday: 20/70, left eye was a shaky 20/25. Not much new there, BUT the doctor did a depth perception test (you know the ones that have a lot of dots and you have to tell what picture pops out at you??). He quickly found that Sumana has NO depth perception! ZERO! Unbelievable!

Here's a side note so I can beat myself up a bit: Sumana has the classic habit of reaching up onto 'my' counter of junk to reach something that is hers. Usually her stuff is in the middle of the counter behind a bunch of other junk. Inevitably, sh knocks a ton of stuff off the counter; once it was a vase of flowers . . . what a mess! Well, I'd usually 'yell' at her and tell her to be more careful. Guess what? Everything must have looked like it was lined up to her, not in front or behind what she wanted. I'm trying not to feel too guilty, but I do feel bad to find out that it wasn't poor motor planning or impulsiveness that caused the accidents . . . she literally didn't see the depth of the objects.

On to the exam. The doctor also did color testing. He was 'gushing' about how girls are so good at telling colors and boys aren't. Sumana's left eye did great, however her right eye has a hard time distinguishing the color red! Unbelievable!

Now, as far as the 'lazy'eye that started this whole quest in October: He reconfirmed what the ABVI doctor said about double vision being a good thing. It shows that her right eye is still trying to function. It hasn't totally shut down. When he looked at her optic nerve he saw optic nerve pallor (pale color--not much blood flow) and optic nerve atrophy. He explained the the central nervous tissue does not regenerate like normal skin does. It doesn't grow back. That's why he's not real optimistic about getting much improvement in Sumana's right eye. (By the way, that damage probably happened at birth. Further damage could have happened in October. He hopes to retrain the newly damaged nerve to restore some of her focus).

The doctor also did a visual field test. It tested Sumana's peripheral vision. Not surprisingly, the left eye tested quite well. However, the right eye test indicated she was blind in the right eye. We know that's not true, however it does suggest that she has A LOT of blind spots in her right eye's field of vision. UNBELIEVABLE!

His plan of action is to have Sumana wear a patch over her left eye 30 minutes in the morning and 2 hours in the afternoon or evening. He hopes to force the right eye to re-engage and improve her 20/70 vision. As long as he can get improvement, we will continue to patch the eye. Once he feels we've reached her best possible vision, he'll start to work on methods of correction. Despite what other doctors has said about Sumana's vision not being correctable, THIS doctor corrected her vision TODAY to 20/30. So take that! (can't you FEEL my attitude tonight??!!!)

The sad part and potentially telling fact, though, is that when Sumana used the patch tonight she could not see where she was going. She kept asking where things were so that she would not bump into something unexpectedly. It was so hard on her that she only wore the patch for two 10 minute tries and one 5 minute try. I'm hoping she can progressively get used to the patching; however, this initial try has us so overwhelmed that it's hard to believe you can get something back that's not even there. I guess the amazing part is how her left eye has taken over to help her function so normally. God's amazing design. If Sumana never gets any improvement, at least she has what she has now and we know it's worked for her so far. Who would have thought her right eye was so bad?? Why didn't any other doctors ever notice this???? Unbelievable!

So, we're trying the patch 'thing' for 2 months, then getting a re-check with this doctor. Then, he expects another follow up 4 months later. At least we're trying to address this issue now and not much later. She is reading at a 3rd grade level and has reached a standstill because of double vision, blind spots and general blurriness. I'm going to look into reading materials that have large fonts and lots of white space. I know of several possibilities. Maybe if she can read increasingly more difficult passages in this format, she can progress with her reading even while we're trying to figure out this eye puzzle of hers.

Well, I've rambled enough and didn't even touch on the horrendous roads this morning or Sumana's appointment with her pulmonary doctor. Suffice it to say, she's doing well. She needs to restart her cough assist exercises and needs to resume using her inhaler spacer to ensure she gets all the aerosol into her lungs for the most benefit. Her lungs are about 50% the size of a comparably sized and aged child. Her doctor wants to increase the muscle tone around the lungs and force expansion of the lung cavity to increase her potential to knock out viral infections and to give her the stamina she will need to continue walking (and other activities) as her body grows. I think it is lung capacity numbers that started around 30 percent and now she's up to 52%. Definitely better, but it needs to get much better. She still is diagnosed with restrictive lung disease. That's it in a nutshell! Good night!

Saturday, January 29, 2011

The Problem with Assumptions

I think I must be the Queen of Assumptions. It is not a crown I wear proudly. This time I think it was a truly innocent/ignorant kind of assumption, but I think it's caused some delays in helping Sumana, none-the-less.

I ASSUMED way back when Sumana came home that a pediatric opthalmologist would address any issues that came up with her vision. I thought (assumed) that instead of taking her to Canandaigua, (like the rest of the family), going to Rochester to a 'specialist' would meet her needs. I guess I was wrong.

Sumana and I went to the Association for the Blind and Visually Impaired (ABVI) to get their doctor's opinion about some visually problems she seems to be having. Within 10 minutes I knew the pediatric ophthalmologist had not done her any favors. (As a disclaimer, she's seen TWO different pediatric eye doctors; it's not that I have a problem with either of them, I just found out that they had us 'barking up the wrong tree').

Within a short time we found out that Sumana's left eye is much stronger than her right eye. The strabismus that showed up in October was, in fact, likely due to increased pressure on the fibers running through the optic nerve. The pressure probably interrupted the innervation between the eye and the brain and 'helped' to 'shut down' her right eye (thus, the wandering began). The good news is that Sumana's double vision is a sign that the right eye hasn't TOTALLY shut down yet. With therapy, it can probably be trained to work properly again.

VISION THERAPY?? Until about a week ago I had never heard of it. Sure, there's physical therapy, speech therapy, mental therapy . . . why not vision therapy? I read an article about a week ago in our state homeschool magazine that addressed many questions I had about Sumana's academic progress. I was convinced that her academic problems are largely due to visually problems. AND, I also started looking into vision therapy computer programs. In addition, a friend of mine mentioned she had heard of another child who had just completed vision therapy. Huh . . .??!!! I guess it is out there, just another option I hadn't heard about.

So, back to the pediatric eye doctors: I have been told Sumana's optic nerve atrophy makes her vision uncorrectable. At the most, she was given a simple eye exercise to try to refocus her eyes when the right one strays. In just a short time, ABVI's doctor recommended a developmental opthalmologist. What? That's another thing I've never heard of! And, get this, he's in CANANDAIGUA!! UGH!!! I've been traipsing to Rochester all these years and the doctor Sumana needed was right near us!! UGH!!!

I know this is all in God's timing, but it is rather frustrating to find this out six years after beginning visual tests. I also know, that the incident in October probably made us more aware of her issues and some possible causes.

Back to the ABVI appointment: We also found out that Sumana has multiple blind spots. These are areas that she literally can't see. She called out letters off an eye chart and skipped the same one over and over. This happened in three different areas with one eye and two times with the other eye. I almost feel guilty for getting frustrated with Sumana when she would skip words in a story she was reading. Huh . . . she couldn't even see them! No wonder I had to completely isolate the word for her to find it.

The ABVI doctor didn't give Sumana a full exam with recommendations, because she felt the developmental eye doctor should be our next step. However, Sumana did experiment with magnifiers and prisms and both helped her see nearly 20/20. (That's amazing, considering her right eye tested at 20/80!) So much for not being correctable! She may not wear a traditional pair of lenses, but there are specialized lenses that will definitely help her. Yea!

So, Tuesday morning we go to meet with the developmental opthalmologist. It will be interesting to see what he recommends. It probably will be some type of vision therapy. We'll just have to wait and 'see'. (ha, ha!)

Also, on Tuesday, Sumana will have her annual (or is it semi-annual?) appointment with her pulmonologist and respiratory therapist. We have not used the cough assist machine in six months. I hope we don't regret it, but I guess it'll be a good test to see if she really still needs it. She is so fed up with PT exercises, eye exercises, OT exercises, etc., etc., that I've let the cough assist slip. (She really is developing a very strong opinion and sees great injustice that no one else has to do all the exercises that she does. Forget the fact that it makes her stronger and healthier . . .I guess that doesn't matter to a tween!)

So, I've learned that I need to ask more questions and if I don't like the answers I get . . . look harder to find someone who might be able to find the best answer for Sumana. There are so many new options available today that Sumana's future is going to be very bright. We just need to get her the correct type of help and encourage her to do her best!

Friday, January 21, 2011

Busy Time

As always, we've been on the run. Just to give you an update, Dr. Silberstein (neurosurgeon), is pleased with Sumana's recovery since he placed the new shunt in October. Unless she starts to get unexplained headaches, he doesn't need to see her again for another year!!! Yea!

Sumana does continue to have a lazy eye (strabismus). I thought it might still be related to her shunt because the symptoms began just 2 weeks before her surgery. However, Dr. Silberstein said he does not think it is related. I have seen Sumana's reading progress plateau over the last year. Moving to chapter books has been very difficult for her. Her eye doctor said she has permanent optic nerve damage from birth and her vision is not correctable. Since her vision seemed to test ok, we've just 'gone with it.' Now, though, I'm not so satisfied.

Next week Sumana will have a low vision exam at the Association for the blind and Visually Impaired. I don't know if she'll qualify as visually impaired, but I guess it makes a logical next step. The association has lots of resources available. I've actually had their phone number for THREE years! And I never called! UGH!! Anyway, if they determine her vision is ok, then I'll start looking into developmental disabilities. However, she does much better with books in large (giant, actually!) print, so I have a feeling she has some kind of visual problem. I guess we'll know more next week.

Gretchen goes back to college next week and Jade starts back up with work at the college. I've inquired about part time work at two area libraries, so I may be back working soon, too. Jeffrey LOVES his new 'permanent' bank home and starts additional training in February. Andrew is looking forward to turning 15 in February so he can apply at Wegmans! Gavin is 14 months and is starting to get the hang of walking. Greig still likes his work with Olan Mills, but he's only working 2-3 days a week, so that's a bit rough on the pay check, but it's the season, I guess. I'll try to update when we have more Sumana news. Take care y'all!

Monday, January 10, 2011


Sumana's back pain is virtually gone. She is back to doing her PT exercises and stretches. She has a final electro-stimulation on Thursday. I think the combination of exercise/stretching, e-stim and more movement in general have helped her get past the pain.

She saw her neurosurgeon on Friday and he is pleased with her recovery. She will only see him once a year now! The doctor did not think her 'wandering eye' was related to her shunt, so now we're on to other causes. It's just strange that her eye began to wander 2 weeks before the shunt issues . . . it was better immediately after surgery, but it has been really bad the last month. She sees Dr. Gearinger (eye doc) in February. I've also asked for help from the Association for the Blind and Visually Impaired. She has plateau-ed in her reading ability and I want to find out if it's related to her optic nerve damage, wandering eye, or what?

Her next surgery is April 18th and it will be a VEPTR revision. That means that Dr. Sanders will remove the outgrown rods and replace them with new ones. Sumana is pleased that we were able to schedule surgery on a 'non-AWANA' night so she won't miss out on the fun.