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.
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
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!
I really am not sure how the months fly by quite so quickly! I cannot believe it has been 6 weeks since I updated!
Alex continues to experience the best year of his life. I am really unsure of what to say, but so very grateful for the incredible team of doctors and nurses who have gotten him to such a stable place. A few years ago, this "normal" life living without constant hospitalizations just didn't seem possible. To watch Alex thrive and enjoy being a boy is such a joy to me.
By far the greatest joy is watching the love between my two babies. While having another child was something I wanted so desperately. Alex craved a sibling every bit as much. He never takes his sister and his love for her for granted. He frequently tells her that she is his greatest gift. he has even pronounced Halloween his new favorite holiday since that's when he got "his bundle of joy". Anyone who spends any time with my two comments on how special their bond is. It really is more then I ever hoped for.
Maddy continues to keep us on our toes. She was hospitalized shortly after my last update. She had a fever and croup. Her blood counts did not respond as they should so she had to be admitted for 48 hours. After that admission, her hematologist decided we needed to support her little body more. She was started on a treatment to force her bone marrow to produce more neutrophils (a kind of white blood cells). She has responded exceptionally well. The treatment can range from once a week to every day. It is a shot so they try and use the lowest dose possible. She had such a great response that we are treating only twice a week. This medication should keep her from future hospitalizations for "routine" illnesses because her counts are much closer to normal range. We also had an upper endoscopy to figure out her malabsorption. My understanding from the nurse is that the biopsies are normal so I am not sure where that leaves us as the doctor was sure they would be abnormal. We follow up with our GI next week. We also had a spine MRI trying to determine why Maddy's brain and legs don't communicate correctly. That was also normal so we need to move on to other testing. Dr. Koenig has ordered two other tests to look at muscle and nerve function. We are trying to get them scheduled ASAP. We are trying to determine if there is anything else we can do to help her besides continuous PT. We pick up her orthotics on Tuesday so hopefully that will help as well. Despite her challenges she is thriving socially and emotionally. She is so smart and FUNNY! My sassy little diva.
Mimi and PopPop came to join us on our trip to Houston. It was good to see them and have some fun times, but I wish we could have had an enjoyable vacation vs. medical appts. I can't wait for our trip to SC this summer!