We had the most amazing day today! Our neighbors took us out on their new boat. We had so much fun. Alex was all smiles and giggles all day long. He swam in the lake with his life jacket on without us holding him which was a huge accomplishment. he also rode on the tube being pulled by the boat and kept asking to go faster. I was so proud of him. It was just a nice "normal" day for us as a family. And so very much needed this week. Todd and Rosa- Thank you so much!
My only regret is that I didn't have my camera with me, which is so unlike me!
Wednesday after our "bad news phone call", we were lucky enough to meet up with our "old" OT. Liz was Alex's first therapist and holds a special place in our hearts. She was always wonderful with Alex. She knew how to push him, but still make therapy fun. Liz and I always got along more like friends and even took the kids to the pool together one summer. Well right before Alex got diagnosed with mito, Liz left our therapy place and went someplace that didn't take insurance. We used someone else for a while and then we stopped therapy all together because Dr. Koenig didn't want to overtax his body. So I was in target one day and ran into Liz and found out she is now working for an organization that takes insurance AND comes to your house. Well, Alex has been really struggling with hand strength so I finally (after much pleading) convinced Dr. Koenig to allow us to restart Occupational Therapy. So we are so happy and thankful to have Liz back as our therapist.
Lastly, My dear friend Mariah and I have walked this journey together for the past 3 1/2 years. We have shared so much. One of the struggles we have confided in each other, but don't always talk about openly with others is the financial strain of having a child with a chronic illness. It is so much more then the medical bills. It is countless copays, prescriptions that aren't covered, travel to see the right doctors, and numerous other little things that all add up. Mariah's Dad and Brother wanted to do something to help families with this financial struggle. So they have started a non-profit that accepts donations and will help with costs not covered by insurance. You can even donate in honor of someone. You can check out their new website at www.helpmitokids.org.
Thank you for the support and prayers the past week (and always). We feel blessed to be surrounded by so much love.