Alex and Maddy

Alex and Maddy

Wednesday, June 8, 2016

Happy Birthday, Alex!

Happy Birthday, my sweet boy. 12 years old...That doesn't even seem possible. As I spend today looking back over the past 12 years, I am amazed at you. Amazed at your strength. Amazed at your determination. Amazed at your kindness. Amazed at the joy you find in life. Amazed at your vibrant personality. You my son are AMAZING. I pray that you always remember the strength inside you and know that God has incredible things in store for you. I love you more then you will ever know.


Friday, May 13, 2016

A New Addition

Since Alex was little and we realized he was going to have medical challenges, it has been our goal to give him the most "normal" life possible. As he has gotten older it has become more difficult as he has not been able to be as independent as he would like because of his health. Many years ago we started the process of trying to get him a service dog. The organization we were working with provides dogs free of charge to families, but they have a REALLY long wait list. It has been five years with no progress. Last fall I met a trainer who trains service dogs for children with complex medical issues who cannot receive a dog through other organizations. He trains each dog specifically for the child. On Christmas we surprised Alex with the news that we were going to start the process to get him a dog. We are happy to introduce you to Alex's new service dog, Zoey...

She is a 5 month old Giant Schnauzer. She is the sweetest little girl and already so well behaved. She is home with us for a few weeks before she heads back for more training. We are so incredibly grateful to Hilton Butler and The Butler Family Foundation for this bundle of hope. Zoey will have many jobs from alerting Alex and waking him up when his pumps are alarming, carrying his emergency medications, retrieving his bag, being a companion, calming him when he is suffering from anxiety and most importantly alerting us when Alex is becoming ill so we can intervene more quickly. We will begin fundraising in the next few weeks, but wanted to introduce Zoey so you could share in our joy and excitement for Alex.


Saturday, April 9, 2016

Long Over Due Update and Pictures

We have just returned from a long week in Houston following up with our specialists down there.

I'll start with Alex...My sweet Buggy had a great set of appointments. Multiple times this week we had doctors stare at him in amazement, shocked at how very far he has come. Five years ago Alex was so unstable and critically ill on a regular basis. The Doctors did not think he would live to see his tenth birthday. Thanks to a team of incredible and caring doctors little by little we added interventions that have turned our lives around. For the first time this week, none of his doctors wanted to make any changes. While Alex still has the potential to become critically ill on a moments notice as he showed us in October, he is so much more stable. We have given Alex a quality of life we never thought he could have. He is a purple belt in TKD, he is one requirement from becoming a First Class Scout, and he has recently started Golf Lessons through The First Tee of Fort Worth and LOVES it. He continues to live life with a joy and perseverance that inspires those he meets. His greatest joy is being a big brother to his Maddy Moo.

Oh our Maddy...She is such a mess (in a good way). She is so smart and so sweet and so very funny, but she has the most strong-willed, determined, stubborn streak in her. She definitely keeps this mama on her toes! My little strawberry blond is fiery for sure. Overall the doctors were happy with how she is doing, but there are still concerns and the need for more testing. Her gross motor skills are still not where they should be. That coupled with some of her "tendencies" in gait and body positions lead Dr. Koenig to think we may be missing something neurologically. We are going to repeat her brain and Spine MRI in hopes of finding a treatable cause for her gross motor delay. Also, Maddy's immune blood work is almost identical to Alex's. That along with the fact that she continues to get sick fairly regularly has Dr. Pacheco considering putting her on the immune replacement that was instrumental in Alex's turn around.

I have always been someone who loves to have pictures, but years ago when Alex was so sick that "need" became much more important as I realized that someday those pictures might be all I had. I wanted to capture every moment, every memory. I have been so fortunate to work with several incredible photographers over the past few years he have helped me to accomplish this goal. I always say I don't want the "perfect" picture I want our photographers to capture my kids personalities. My good friend, Tina at Tina W Photography outdid herself this time! Not only did she perfectly capture the kids, but also how much they love each other. I hope you enjoy these as much as I have!