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!
Tuesday, January 12, 2016
Our Pastor has decided to take this year and figure out how we can be more grateful people. I love this topic and this sermon series that he has chosen.
As some of you know we have had a really rough few months in many ways. Just when I was starting to feel really emotionally drained, we received one last blow as we learned that Maddy is not making sucrose and glucoamylase, two of the digestive enzymes necessary for processing sugars and starches. We have had to cut out all sugars (including many fruits) and all starches (including many vegetables). Maddy can't have grains, potatoes, sweet potatoes, pretzels, crackers, waffles, etc. Pretty much all carbs are out. Considering this is pretty much all she was eating it has been rough on all of us. But as we struggle with this new diagnosis. I CHOOSE to focus on all the blessings in my life that I am grateful for.
First and foremost, I am so GRATEFUL every single day that God chose me to be Mom to my two incredible children. I have a shining example everyday of living life with joy, with strength, with courage. Watching the reality of my children's life reminds me that even when life is not fair when can choose to be happy and make a positive impact on others. I could not be more proud of my smart, funny, brave children and am so glad I get to walk through life with this constant reminder of what true strength looks like.
I am so GRATEFUL for our friends and family who have supported us in every way imaginable. Who are there to share every laugh and every tear. Who are willing to let me vent when I need to and encourage me. Family and friends who love my precious babies exactly as they are.
I am GRATEFUL for our church and church family who are a constant source of strength. To our incredible Pastors, Chris and Molly who challenge us weekly to change, to strive to be the people God created us to be. Who are willing to admit their own flaws as they walk this journey with us.
I am GRATEFUL for all the incredible experiences we have been a part of as a result of a life that is not always easy. Alex and I have had some incredible opportunities over the past year(s) simply because despite his challenges his amazing spirit and perseverance touch others. We have been able to use his gifts to help some of our favorite organizations fundraise and help others who are struggling.
I am GRATEFUL for the HOPE of an incredible 2016!
Saturday, October 31, 2015
Two years old...How has it already been two years since my sweet Maddy was born. From the time I was little I dreamed of being a mother and those dreams always included a daughter. When I had Alex I instantly fell in love with my mama's boy, but I always knew I wanted more children. Because of our journey with Alex, I wasn't always sure that we would get the gift of more children. We waited 9 long years to try again and what a gift it was on Halloween of 2013 when our Madelyn came into this world. It is all too perfect that Maddy is a Halloween baby because it fits her personality perfectly. She is both Trick and Treat. She is the sassiest, most strong-willed little girl, but also the sweetest, most loving. One minute she is standing with her arms crossed defiantly and the next she is putting herself in time-out for the 5th time in a row so she can get one more hug after she says she is sorry. She is quick to tell me no, but just as quick to say "I wuv you". She is all girl. She loves to play with her baby dolls and cook in the kitchen. She loves all animals. She loves to read. She loves her music and cooking classes. She LOVES her brother and her dog. She loves life! She is so very funny. She makes us laugh all the time. She has been known to thrown something when she is mad and then oh so sweetly say, "ooops..sorry....what happened?". When I ask what she wants to eat her first response is always "Hmmm...let's see." She has brought so much joy into our house.
My precious Madelyn-
I love every ounce of your being. You have so much personality and so much love in that tiny little body. You are so determined to find your way and explore and learn. You are so eager to show your love with a hug or a cuddle or saying "I wuv you". You are so incredibly smart. You already know your colors and shapes and are always counting to three. Your personality and sweet voice are infectious. We can't help but smile and laugh when you are around. Mia follows you wherever you go. You and Alex are the best of friends. Thank you for making me smile everyday. Thank you for completing our family. Thank you for giving your Buggy the sibling he always wanted. But most of all thank you for being the precious incredible little princess you are. I love you.