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!

PS- I promise pictures soon!

Monday, June 8, 2015

Happy 11th Birthday, Alex!

11 years. How my sweet boy did you ever get to be 11 years old? I am so very proud of the brave, strong, caring boy you have become. You always have a way of endearing yourself to everyone you meet. I have loved watching you mature this year. I look at you and still see my baby boy and yet you are growing up and becoming such an incredible young man. You continue to astound us with that curious, smart mind that absorbs so much of the world around you. I have watched you become the most loyal, protective, sweet older brother. Maddy adores you. I love to hear her call you "A-yex" and look up at you with so much love. I love how much you love her and how you always want her with you. I love to see you grow in confidence and independence.  My sweet boy, I hope you always feel the love that surrounds you.


Thursday, May 7, 2015

Exciting Month

I have been trying to find the time and update for weeks. Unfortunately, every time I sit down to write an update something comes up!

At the beginning of April we were contacted by one of the child life specialists at Cook Children's. They wanted us to represent Cook's at a Benefit Gala being held in conjunction with the ACM Awards. The gala was benefitting the Child Life Zone at Cooks. They needed to choose a patient who had been positively affected by the Child Life Zone. Alex has spent countless hours there over the last few years and especially the last few months as he created a Lego Stop Animation Movie with the production staff. I am not sure I can even put into words what that night was like. It was amazing to see my boy confidently meet celebrities and donors and speak eloquently about the hospital and what child life means to the patients and families. Everyone was so kind and genuine. It was so nice to see my boy with such a huge smile on his face. We are so grateful for the opportunity to attend this gala and help raise funds for something that means so much to us.

Garth Brooks and Tricia Yearwood

Nancy O'Dell

Jerry Jones
The magic continued...As we were leaving we were asked to come to the hospital the next afternoon to once again speak with Garth Brooks. While the child life zone was swarming with people anxious to get autographs, we were taken out to meet Garth as he came in. We spent a few minutes talking to him. He presented Alex with an autographed cowboy hat that a generous donor had bid on and wanted Alex to have. Such an amazing memento of our weekend. Monday as we were trying to recoup, I received a message on Facebook that Alex and I were on Entertainment Tonight! What a crazy, magical experience. As I profusely thanked the child life staff for this experience, I let them know what a great teaching tool it is for me to be able to point out that as hard as his life is, as much as mito has taken from him, we also gain...incredible experiences, amazing friends, and unforgettable memories. 
Our crazy life continues in full swing, but I see a light at the end of the tunnel and hopefully some slower days!  Alex is busy finishing up school. We have 2 weeks left in fifth grade! Homeschool co-op finished this past week. We are busy with Wish Night (The Huge Make A Wish Fundraiser that we participate in every year) rehearsals where Alex was given a featured role in the opening number. Alex is also still busy with TKD, boy scouts and has done some other volunteering with Make A Wish. he continues to do well medically. We are so thankful for the incredible team of doctors and nurses who have brought him to this place and found the right mix of interventions to have him the most stable he has ever been.
Miss Maddy Moo also has some exciting news. After months of therapy three times a week, she is starting to walk with the help of orthotics and a walker. She loves her new independence and is so proud of herself. It has been and continues to be such a struggle. Her PT always says that she only walks by sheer determination. She works so hard, but she has come so far from a few months ago when she wouldn't even bear weight on her legs. We are so proud of her.

We continue to work with hematology, GI and neurology to try and sort out this little sweet pea. We saw GI in April and they started her on a special medication to try and increase her absorption and gain some weight. She seemed to be making some strides, but she has been sick this past week and was unable to eat as she had blisters in her throat. Hopefully, now that she is feeling better she will start to gain again.
We did manage to sneak in time with Heather at H. Parker Photography to get some bluebonnet pictures. Our session was right around Maddy's bedtime and she was a bear. I was really worried we wouldn't get any good pictures, but somehow heather worked her magic and got some beautiful photos!

Thank you for sharing this crazy journey with us!