"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!
Tuesday, February 1, 2011
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!
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!
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
Progress!
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.
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.
Wednesday, December 22, 2010
Possible Answers
Sumana saw Dr. Sanders Tuesday and the x-ray showed something earlier ones (apparently) did not. The lamina on the vertebra that the VEPTR is attached to is eroding or damaged. And, the lower right rib appears to have cracked where the other rod attaches. Both these things sound worse than they are. Both are risks of using growing rods. The good news is both areas appear to be healing well and Sumana has been doing better pain-wise.
The other good news is that her upper spine is in good position. Dr. Sanders is VERY pleased with that. My concern about her still 'slumping' to the right is not the big concern I thought it was. The doctor's main goal is to help her straighter her scoliosis curve and that's happening. Since things look good, we're looking at surgery in May. If she has any complications before then, Dr. Sanders will move the date up. However, he feels confident in waiting til May at this point because his objectives are being met.
Overall, good news. Sumana starts PT at my PT office tomorrow. She'll get some special attention for her back and hopefully continue to help her work through her remaining back pain.
The other good news is that her upper spine is in good position. Dr. Sanders is VERY pleased with that. My concern about her still 'slumping' to the right is not the big concern I thought it was. The doctor's main goal is to help her straighter her scoliosis curve and that's happening. Since things look good, we're looking at surgery in May. If she has any complications before then, Dr. Sanders will move the date up. However, he feels confident in waiting til May at this point because his objectives are being met.
Overall, good news. Sumana starts PT at my PT office tomorrow. She'll get some special attention for her back and hopefully continue to help her work through her remaining back pain.
Saturday, December 18, 2010
We owe you pictures!!!
Well, I think we're still lacking December pictures, but at least we're starting to get you caught up!
By the way, Sumana still is having quite a bit of pain, but she is going to start some intensive PT to address the issues with her back. She'll still get PT on Mondays at the Happiness House, but she'll go an additional day or two to a different PT to get treatment on her back. She sees Dr. Sanders again this week, so we'll see what his next plan is for her. We'll update again next week, with more pictures (I hope!!)
Sunday, December 5, 2010
Sincere Apologies . . .
I'm so, SOOOO sorry it's been soooo long. Unfortunately, this time 'no news is NOT good news.' Sumana started out great after surgery, but we've had a rough couple of weeks. First of all, I took her back in on her birthday (November 22), to check on the way her back was 'bulging' or 'sagging' as bad or worse than before surgery. Usually, she comes out straighter and taller, but this time we saw little, if any, improvement. At that visit Dr. Sander's nurse practitioner said things looked good on the x-ray, so the obvious answer was that we didn't get as much benefit from the expansion as usual. This was the last expansion on these rods, but I can't help but wish the doctor had put in new rods THIS time. I'm afraid she'll be having surgery much sooner this time.
Well, pain-wise Sumana did very well: that is until Thursday when she started up with a sharp, stabbing pain on the right lower side of her back. It seems to be at the place where the rods connect on the lower side. So, we were off to see Dr. Sanders on Friday, Dec. 3. Once again, the x-rays showed nothing. The rods look like they are properly secured and there was no sign of infection. However, she's back on the narcotics and she wakes me up EVERY night for meds. If she's not better by Thursday, the doctor wants to see her again.
So, it's been a rough time this time around. Add to that, the fact that Daddy has been in New York City, Philadelphia and Albany for work . . . Sumana really misses her dad (ditto for the rest of us, too!)
We're off to celebrating the Christmas season. Gretchen has a choral concert Thursday, our Williams family get-together is Sunday, the Foster Family party is next Tuesday, and the list goes on. I still have pictures to load, but it takes awhile, so that will have to wait for another time.
Well, pain-wise Sumana did very well: that is until Thursday when she started up with a sharp, stabbing pain on the right lower side of her back. It seems to be at the place where the rods connect on the lower side. So, we were off to see Dr. Sanders on Friday, Dec. 3. Once again, the x-rays showed nothing. The rods look like they are properly secured and there was no sign of infection. However, she's back on the narcotics and she wakes me up EVERY night for meds. If she's not better by Thursday, the doctor wants to see her again.
So, it's been a rough time this time around. Add to that, the fact that Daddy has been in New York City, Philadelphia and Albany for work . . . Sumana really misses her dad (ditto for the rest of us, too!)
We're off to celebrating the Christmas season. Gretchen has a choral concert Thursday, our Williams family get-together is Sunday, the Foster Family party is next Tuesday, and the list goes on. I still have pictures to load, but it takes awhile, so that will have to wait for another time.
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