Highs and Lows

This week has been a week of amazing highs and awful lows...

Alex had a pretty quiet week which was much needed after last week/weekend.

Maddy had her usual school and ballet and therapy, but had some medical testing and fun events as well.

Victory Therapy Center and Riding Rebel continues to be the highlight of each week.

Maddy grooming Rebel

Obstacles

Riding Backwards

Riding Sideways

Maddy leading Rebel back to the stables

Maddy and her favorite volunteer, Kasey

Thursday was spaghetti dinner at school. Building Blocks has been so amazing for Maddy and our family. I am not sure what we are going to do next year! Mad loved her night playing with her friends. 

Maddy, Aylee and Rosalie

Friday started with some medical testing. I have had quite a few people ask about this. Maddy is diagnosed with Mitochondrial Disease like Alex. Mitochondrial disease can effect any organs in varying degrees from mild to severe. No two people with Mitochondrial Disease present in the same way. I often say that Maddy has reaped the benefits of our experience with Alex. Because we were able to diagnose Maddy so much sooner and start being aggressive in treatment of illnesses she has not progressed to the same level as he has. However, Maddy's looks can be deceiving. She looks completely "normal" by all appearances, but she has quite a bit going on medically. Besides our mitochondrial disease, we have a gene that is known to cause epilepsy.  Alex is diagnosed with epilepsy based on many seizures throughout his life. While Maddy has not had any large seizures, she has had some periods of "zoning out" so it was decided that we should do an EEG to see if there are any abnormalities. She has also had her thyroid testing come back our of range and increasingly abnormal for two years. We repeated labs again to decide if and when we need to treat. Maddy was a trooper for all these tests. 

After getting through the medical tests, we were able to turn our attention to the Fairytale Ball which Maddy looks forward to all year!

We are so grateful for HopeKids for allowing us the opportunity to make amazing memories together.

We have some very specific prayer requests this week! Bruce was laid off very unexpectedly on Monday. His company went through a restructuring and his position was eliminated. We ask that you pray for God to open amazing new doors. We also ask that you pray for our insurance to continue until he finds something new.

Ali

Alex continues to raise money for Cook Children's: Alex's Fundraiser