Friday, September 26, 2008

What a week.....

Friday is finally upon more week of Vital Stimulation has come to a close! Today Mylee drank Pink Lemonade, thickened of course. She did pretty good, in fact her therapist mentioned she thought today was probably her best day. Mylee continues to sound congested, but seems to be coughing the junk up with more force!

We are scheduled for a Modified Barrium Swallow test next Friday morning, that means 3 more sessions of Vital Stimulation to continue her improvement before her big test! We need lots of prayers because if Mylee doesn't show any improvements and continues to aspirate during the MBS the Vital Stimulation therapy will be discontinued. We will have had 18 session by the time we have the MBS and if their isn't any improvement their is no need to continue.

We have a neurosurgeon appointment with a new neurosurgeon at Phoenix Children's Hospital on November 5th. At that time we will need to have more MRI's of Mylee's brain, neck and spine to see if her Chiari has caused more compression of her cerebellum. Mylee is currently experiencing symptoms including head pain, lack of balance (still not walking), dysphagia, and maybe even some numbness in her hands and fingers again. We are starting to wonder if her first surgery was a failed decompression. We won't know anything until we see the MRI results.

Dave and I are not convinced that her Chiari Diagnosis is what is causing all of these issues. In April (I think it was April) of this year Mylee had a full spine MRI done. It showed a small fatty tissue at the base of her lumbar spine. This is an indication of what is called Tethered Cord. We were told not to be concerned at that time because she was very young, not walking yet, and not potty trained. However, if not looked into and much further down the road and it becomes a more severe case - this Tethered cord could potentially paralyse her. Due to her still not walking, we will be looking at this more closely. She would need to go through a number of tests and possibly would need to see more specialist (story of our life, right!)....we just won't know until we see Dr. Manwaring. We will keep you updated!

Our Chiari Walk Across America was a huge success in Arizona and around the country. Country wide we raised 120,000 dollars to support Chiari Malformation. The state of Arizona alone raised 17,000 dollars! Way to go Arizona!! And thank you to all of you who supported Mylee and donated! I will post more information about new fundraisers as I hear about them. Mylee has also become a superstar, she is one of the faces for an organization that we have supported in the past. Please visit www. and check out her beautiful face! Click on About us for more details and a colored picture of Mylee!!

If you are also interested, Mylee's speech pathologist sent this to us to read. It is a dissertation on Chiari Malformation by Claire Miller, specifically one of Mylee's condition called Dysphagia. Click on: http://www.ohiolink .edu/etd/ send-pdf. cgi/MILLER% 20CLAIRE% 20KANE.pdf?

And finally to end our week....we received some wonderful news.......Dave, Mylee and I are proud to announce we will be exploding with joy when we welcome to the world in February a brand new baby sister for Mylee! That is right, we are having a GIRL!!!!!!


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