(This is Chism... Becca asked me to fill in for her on here)
Well, we just got finished talking to the neurologist about the test results. Fortunately her heart and kidneys were clear of any abnormalities, and the neurologist said if any tubers are present the child is born with them and are not likely to develop new ones(note that these are not tumors, but small growths/abnormalities called tubors). However, the MRI did reveal that she had several spots scattered about on her brain(again...not tumors), some around the size of a quarter. The neurologist recommended starting her on a new drug therapy called Sabril, which was just approved in the U.S.
It is considered the "gold standard" of medicines for this type of illness(Tuberous Sclerosis Complex). It should help suppress the infantile spasms she's been having, but will not affect any of the "tubers" on her brain or anywhere else. There are some side affects to this drug, mainly a 1 in 3 chance that it will damage her vision... affecting her peripheral vision. If any damage does occur, it will be permanent, even if she stops taking the drug. Of course, it's not like we have much of a choice... since our choice is either take that risk or allow the seizures to continue, which could affect her brain development. I'm sure there are more details, but me being a man, I have a knack for leaving them out. Thank you for all of the thoughts, prayers, and well wishes, we really appreciate it. Please continue to pray. We will get to bring Bailey home today.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and maybe make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?", you say. "What do you mean Holland?? I signed up for Italy! All my life I dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people that you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Taken from Children with Visial Impairments Edited by M. Cay Holbrook, Ph.D. Copywrite by Emily Perl Kingsley 1987