Many of you have probably noticed that I’ve taken the last month off. I’m sorry about that-It’s something I just had to do. A lot of things have changed but first things first.
Firstly, Satomi is doing well. She had her quarterly brain MRI and MR-Spectroscopy tests done in late May. The original tumor is inactive and the second lesion has shrunken. Cancer-wise, the news is as good as can be expected. We are all happy. Our next set of tests should occur sometime late July or early August.
Satomi has completed Phase-1 of the Vision Therapy “treatment” and is almost done with Phase-2. We can’t really tell if it’s made any difference yet but we remain optimistic.
Satomi’s weened off of the Beta-Blocker completely and only takes 2 doses of pain-killers a day for her back. The infamous kidney stones are completely gone and her weight continues to steadily fall. The oral chemo pills are still a lot to swallow but luckily the side-effects remain minimal.
She’s been pushing herself a lot. Satomi is back to her Vestibular (Physical) Therapy twice a week and her in-office Vision Therapy once a week.
Her household activity now includes the laundry, loading/unloading the dishwasher, and some cooking. It remains limited by her double-vision, dizziness, fatigue, and back-pain but overall things have improved dramatically. She even spends time on the computer playing video games. It seems to be good practice for her eyesight.
We are all so happy that she has the ability to spend more time with the girls. She plays games with them all the time. With a bit of wheeled help, Satomi attends Kandices basketball practice or their swim lessons. Just a few weeks ago, we spent a couple of days at Disneyland and watched our little Kandice graduate Kindergarten.
Our family life is going well.
The baseline tests were completed and the results are in. Take a look at a few of the more telling results…
Here is a photo of a test of her hand-eye spatial coordination. The nine squares are targets. The orange marks are where her eye-aimed pencil located them.
As you can see, her spatial perception is a bit “squashed” but not bad overall.
Here is the sketch that Satomi was composing while looking at a pear with one eye closed. The one on the right is with her right eye and the one on the left is from her left eye.
Now here is a “photoshopped” version of what a normal-seeing person would sketch.
Looks like something is wrong huh?
Here is a photo of the results of a computer test that measures peripheral vision of specific colors. The upper plot is for the left eye and lower plot for the right eye.
Her left eye-her good eye-has only half the peripheral vision of a normal person. But here’s the twist: her right eye only has half of that. Not good.
The Neuro-Optometrist recommended a full regime of vision therapy and a session of “special” therapies. It was good to hear that the Optometrist was optimistic that improvement would be made. Unfortunately, portions of this therapy would be redundant to Satomi’s Vestibular Therapy so there will be a point in the near future that will require us to make a choice. I guess we’ll have to see how it goes.
We’ve already given our approval to start the process. If all goes well, it should start sometime during the week of May 24th.
The Lithotripsy session on her left kidney went well. And now for the right side…
We have a confirmed appointment at the same surgical center on Monday May 10th. The Urologist expects that a stent should not be necessary this time around since there is no sign of any interim stones passing. Unfortunately, she can’t be completely sure until the actual procedure is performed.
Hopefully everything goes as smoothly as before.
Update May 10th:
The procedure went smoothly and Satomi is doing well. The stone in her right side disintegrated as expected and she was back on her feet in less than 2 hours. They didn’t have to use a stent! She will be tired and possibly disoriented for the next couple of days so I’m staying home to watch her. Besides that, her therapy, healing, and recovery should continue.
Update May 11th:
The pain is subsiding but the water consumption is still high. Besides the strainer she has to use on the toilet, things seem back to normal. We have a follow up in a few weeks.
Update May 28th:
The X-Rays show that the stone is completely gone and there is no pain. We’re so happy to have something actually “finished”.
You all may recall that I was quite disappointed that our inner ear doctor couldn’t give us further guidance with Satomi’s dizziness. Going to therapy twice a week and “letting it heal” is just to passive for us.
After this recent disappointment, we decided to pursue other options; Satomi mentioned Vision Therapy. Apparently while still employed back at Healthsouth Tustin Rehab, Satomi had met a Neuro-Optometrist that specialized in Vision therapy. After a bit of research Satomi thought it may help with her nystagmus problem. We met with our Neurologist and discussed the Vision therapy. He agreed with Satomi’s assessment and wrote a referral.
Until this time, I knew nothing about Vision Therapy. I recently did a bit of digging and took the following excerpt from an Optometrists website:
“Vision Therapy is an individualized, supervised, treatment program designed to correct visual-motor and/or perceptual-cognitive deficiencies. Therapy sessions include procedures designed to enhance the brain’s ability to control eye alignment, tracking and teaming, focusing abilities, movements, and visual processing. Visual-motor skills and endurance are developed through the use of specialized computer and optical devices, including therapeutic lenses, prisms, and filters. During the final stages of therapy, the patient’s newly acquired visual skills are reinforced and made automatic through repetition and by integration with motor and cognitive skills.”
Here is the full website address for more information: http://www.optometrists.org/drericikeda/vision_therapy.html
It sounds quite promising. We set our initial appointment for this past Monday May 3rd.
The initial appointment was at the doctors store-front office. It was filled with eyeglass frames and glass display cases-Not what I expected for a Vision therapy specialist. We spoke of Satomi’s fairly lengthy medical history and described her problem in-depth. We started the large battery of tests necessary to accurately define Satomi’s baseline condition. The testing is so extensive that it will take 3 separate office visits to complete all of them.
We returned today May 5th to continue with the testing. Here is a photo of Satomi trying to draw lines on a lighted table while wearing some crazy lenses. I’m sure that there is an impressive name for this test but I just don’t know what that is.
The session took 2 hours and is still not completed. Satomi is getting through them but is doing quite poorly on nearly all tests. That is an unusual change of pace. We are all so used to Satomi exceeding all expectations.
In this case, I think her poor performance is a good thing. It gives us a clear and practical target for improvement. These tests are designed to simulate real world conditions. Any improvements in test scores is a direct indicator of improvements in Satomi’s daily function.
The doctor is optimistic and has already begun discussing with us the therapy techniques that she will be using. We are returning for the final test session next Wednesday May 12th and expect to start vision therapy shortly thereafter.
When I started this blog, I selected the color scheme and layout almost randomnly. I was rushed and had many things on my mind.
The blog was dark with only a spark of color. It was a bit plain but full of useful information. Sort of like me, I guess.
Well, things are looking up (and I was getting bored) so I decided to change the look. This time, I painstakingly previewed almost all 81 of the possible “themes”.
I selected this one mostly because of the right-column of information. It’s awfully convenient and detailed and I like that. The colors are still a bit gray but definitely lighter than before. The typefont remains hideous but overall, it is one of the nicer “themes” available.
In any case, I hope you like it as I do.
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