Alex and Maddy

Alex and Maddy

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!













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