Alex and Maddy

Alex and Maddy

Sunday, August 16, 2015

Crazy, Busy Life

2 months...the days, weeks and months are just flying by! So often I sit down thinking I need to update our blog and then life starts happening around me!

We have had a good summer. I'll start with Alex. Alex amazed all of us this summer by participating in his first sleep away camp. He spent a week roughing it with his friends at Boy Scout Camp. It truly took a team effort to keep Alex safe and healthy, but there are no words to express how proud I am of my amazing boy. Boy Scout camp is hard for all the kids, but the amount of strength and fortitude it took for Alex to push himself through the week is remarkable. His efforts did not go unnoticed. The two times I went to camp to take care of some medical needs, I was stopped by several people saying they had watched Alex and how amazing he was. The nurse running the health center even commented that instead of Alex coming for care he would bring others because he knew where it was! I am constantly reminded about the strength God packed into his little body. He is an example everyday of pushing ourselves to be the best we can be. Alex was able to make his first rank advancement in Scouts. He also continues to work hard in TKD. He has done a week of Mission camp with our church group and a week of arts camp at our hospital. Medically he continues to do well. We are getting ready to do growth hormone stimulation testing as he is finally stable enough to try and help his growth. We started school in mid July and have already completed 5 weeks of 6th grade. He continues to thrive academically and especially loves Science.

My little Maddy... If I had to choose three words to describe my Maddy they would be sweet, determined and strong-willed. That little 20 pound peanut has more determination in her then most adults. She is such a hard worker. Nothing physically has come easy to her, but she works SO hard to try and move her little body. She is in therapy 3 days a week and amazes us with her work ethic. She will be exhausted and shaking, but still try and take a few more steps. She is getting so close to walking. Our hope is that she can take some independent steps by her birthday. She is still getting her neupogen shots to boost her blood counts twice a week and they have helped immeasurably. She doesn't gain weight very easily, but she loves to eat! She is the sweetest little girl who loves all animals, music, babies and especially her family. She is talking up a storm and always asking for hugs. She says please and thank you and sorry. Her brother is her favorite playmate besides maybe Mia. Maddy and Mia are inseparable.

We are gearing up for a busy fall. Maddy and  are leaving tomorrow for Houston to do some specialized testing to see if we can determine if her issues are muscle or nerve related. Then we are taking our annual trip to Mimi and PopPop's. Alex and  look forward to our time at the beach all year. We start our homeschool co-op as soon as we return. Then Alex has a special event in September  as he was nominated for a fundraising event called Night of Superstars. We also, have a few Make-a-wish events and two trips to the National Institute of Health for both kids to participate in a study on Mitochondrial Disease and immune function. I have also been asked to serve on the family advisory council at our children's hospital and am working about 25 hours a week for Taste Buds Kitchen as well as dancing in the Dance Ministy at church. I am also siting on the panel of a new Special Needs Ministry at our church!

Whoo! Now you know why I haven't had time to update our blog.
Thank you to all who pray for us on this crazy journey!
Ali

PS- I promise pictures soon!

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