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Thank you for coming to visit Shaylee's site.Welcome! I admit we don't update as often as we used to!

Shaylee has a tumor called an optic nerve glioma. This is a tumor that surrounds her optic nerves and across the chiasm (where the nerves enter the brain). This tumor is caused by"Neurofibromatosis" or NF. The NF is something that Shaylee will have for the rest of her life. It could cause further tumors or other health problems at any time.

Through this site, we have shared information about Shaylee, her journey through chemo (60weeks) and beyond.
December of 2007 will mark THREE YEARS since Shaylee finished chemo!
Again, welcome! please take a moment to look around, and sign the guestbook!

Journal

Friday, August 14, 2015 2:29 AM CDT

Good early morning,

Since I can not sleep (we're going to get rain in the next 24-48 hours I'm guessing based on the knees), I figure it's past time for an update... So, I'll attempt a 6 month recap for the few, the faithful!

Last posting was after Shaylee's "vision disturbance" - She had the EEG and the MRI. Both showed no noticeable change in the existing tumors, and no new tumors growing along the visual pathways. This was a big answer to prayers!! However, there was one spot that showed up in another part of the brain itself. Forgive me, I can't think which part at the moment. It may be nothing other than a "UBO" or Unidentified Bright Object, which are fairly common in NF. Or, it might be a new tumor. Neither the neurologist or oncologist are sure. The oncologist wanted to present her case to the tumor board to see what their thoughts were. We agreed it would most likely be a shrug and "check it again later" - - and that was pretty much what the results were. Ha! We did see her ophthalmologist, who confirmed there was loss in her peripheral vision. She did get new glasses to help with the change in vision for distance reading; and yes, again it was within that 4-6month window!

March, April and May were fairly routine stuff. Some migraines, she twisted an ankle, but nothing too major. In May and June we did start to notice she was having some trouble with distance reading again. By July she had to return three library books unread, because she wasn't able to read the small print. We contacted our ophthalmologist with our concerns about that and that Shaylee had commented on not seeing her plate whens sitting at the table. She ordered a "Goldmann" field of vision test, which she said would be an official test for helping determine legal blindness etc. We saw a different ophthalmologist due to scheduling and REALLY liked her. Because of our concerns, we attempted to begin conversation with the school regarding visual services. They really did not want to provide any services, because Shaylee does not meet their minimum requirements - which are best corrected visual acuity of 20/70 (she's 20/50) and a field of vision 20 degrees or less, and she isn't behind her peers. She worked HARD for those A's and B's! After some email communication, we think we've convinced them to begin braille training and possibly orientation and mobility (for dealing w/ crowds, public transportation etc) but they seem unwilling to help with adaptive technology like tablet, digital text books etc.

The field of vision test, revealed that Shaylee does have significant field of vision loss. Her horizontal field is 83 degrees. The normal horizontal field of vision is approximately 160 degrees. The normal vertical field of vision is approximately 135 degrees. Shaylee's measures 55 degrees. Her prescription had also changed again (note - five months!), but they now wanted her to try bifocals.

Shaylee has now been referred for a low vision exam, but that won't happen until September 15th. We have begun trying to get the school to work with us on switching from 504 to IEP and get those services she's going to need. They're still dragging their feet, but seem slightly more willing now that we have numbers. We've requested the doctors report be sent to the school so they'll have it in print. Praying they begin to work with us willingly!

I know I'm forgetting things, but I'm very tired at this point! :) I am so very thankful for the doctors God has placed on Shaylee's team. I have been told by a couple different sources, that hte low vision specialist she'll be seeing is one of THE absolute bests. We look forward to hearing what she has to suggests.

I'll try and remember to review and add anything I've forgotten..... TRY being key word! Please continue your prayers! We meet with the oncologist on the 27th for results of the MRI she did last Sunday (I dont' think I mentioned that!) as a follow up to the one from Feb. Please pray that the low vision exam is helpful and enlightening. I have initiated contact with the National Organization for Parents of Blind and Visually Impaired Children, and I hope and pray they can help us figure out what we're doing!

Thank you for your continued support!


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E-mail Author: mommamonsters@gmail.com

 
 

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