Sunday, May 29, 2011

Summer breeze ♥

It's funny how just a little summer breeze can send you into a complete chilly penguin. You would have thought we were at the pool this morning in 65 degree weather. It actually was 85, blue skies and perfect! All except for that cool summer breeze... It wasn't all so bad, especially if you stayed in the water.

I haven't updated in awhile, but trust me when I say I will have more time now that school has ended for the summer. Mylee has started aquatic therapy (is that what you call it) with her occupational therapist since hippotherapy has ended. Applejack (Mylee's horse) is on a summer break from the heat. The pool is great! However, it is a bitter sweet adventure each and every time Mylee gets near water. I think we escaped with only 3 choking instances today. And to our surprise, Mylee is breathing great!!

We will be kept busy this summer with therapies, continued preparation for Mylee to start Kindergarten and Khloe starting preschool. We only have one planned summer trip to Atlanta for a follow up visit to see Dr. Kendall ( And most importantly getting Mylee stabilized with some current progression in her disease and back to baseline. I will try update you with the short version since most of the updates have been made via facebook and her caringbridge site.

A few weeks ago we thought we witnessed what possibly could be a myoclonic seizure. And then again a few days later another possible myoclonic seizure. A few days after the second incident Mylee was admitted by her pediatrician due to unknown neurological status. Mylee had an emergency MRI, EEG and spinal tap done. We really don't have any information other than the progression of her cerebellar atrophy seemed to be significant compared to the previous MRI done last December. She also has a new finding of delayed Mylination in her cerebral hemisphere bilaterally. The easy explanation is this could be due to her progression in her disease. We will hopefully find out more once all the results come back from Mylee's spinal tap.

Approximately 6 months ago, Mylee failed a hearing evaluation at school. We have been working with both an audiologist within her school district as well as another pediatric audiologist who works with Mylee's ENT. Mylee is now diagnosed with mild hearing loss. Mylee's hearing aids will be ready in about 3 weeks. I will update once she gets them, it will interesting to see how well she wears them.

Our little Khloe bug is growing into a interesting little character and she is keeping us very busy. Potting training has been a little challenging but we know we will eventually succeed with this milestone. We will also be kept busy this summer with her gymnastics and her love for swimming at the pool!

Until next time...


1 comment:

~plaid said...

Thank you for your kind post on my blog. I added you to my list of "mito mates" and hope to get to know you and your family better by reading your updates!