Madison's Story

The Eyes

Yesterday, we traveled to Syracuse for Madi's bi-annual eye specialist appointment. One of the "perks" of her syndrome is that she has REALLY awful vision, severe cataracts, and headaches. She has been seeing the specialist, Dr. Noel, since first grade.
We REALLY like Dr. Noel. One of the things I can tell you is that it is IMPORTANT to find doctors you LIKE. People who are compassionate and willing to take the time to see your child as someone special... we have been lucky to find so many of these doctors along the way, and Dr. Noel is a favorite!
He did not have great news. Madi's vision has reached the 20/40 mark where we need to consider getting the cataract surgery. Madi did not take the news well. Dr. Noel saw her tears and said, "six more months...we will wait six more months". He knows how much she has been through and understands that ANY surgery, no matter "how small" is a huge ordeal for her. I called him a "softie" and he did not deny it!
Madi is struggling with a low grade fever, cough, and general feeling of crappiness. Kept her home from school to see if we can catch it before it becomes bronchitis or pneumonia. For Madi, it is "that time of year" when illness strikes.
Sigh.
Another day in the books, folks!

posted by Rhonda Foote @ 4:42 AM 0 comments

Update

Madi had quite the difficult surgery in August. Dr. came back after x ray and asked her if she had been experiencing more pain than usual...she just shrugged... " a little I guess".
hmmm, I guess.. sometime a few months prior the "hook" in her shoulder had popped out of the bone, and was eating away at muscle tissue, bone and skin.
SO, instead of an adjustment on both sides, we had to do a replacement on the left side.
Recovery was very painful and LONG. She still is not back to "normal Madi activities" like dance, phys ed, etc. This is very difficult for her, as those who know Madi will attest. She is singing, in the school musical, and pounding away on her new drum set (thanks, Dave)...but misses her dance classes and friends ALOT.
She is a teenager now. If you go back into the archives and follow her journey, I think you will be just as amazed at her being a teen as I am! She has gone through so much...too much... and I am so immensely proud of her.
She is all things good in my life... a hard working student, a song bird, a smile that makes my smile grow bigger.
She is my blessing and I only hope that the end of this long medical journey draws nearer. She may never be "big" and she may never stand "tall", but she is has THE biggest heart and tallest aspirations of any child her age I know.
I think I like her a bit....

posted by Rhonda Foote @ 7:55 PM 0 comments