Alex and Maddy

Alex and Maddy

Monday, October 31, 2016

Happy Birthday, Madelyn Paige!

Happy Birthday my sweet Maddy Moo!

My Precious Madelyn-

How appropriate that you were born on Halloween when we talk about Tricks or Treats because you are such a contrast in personality. You are my sweet, loving helper. My nurturer. My little Mommy who wants to take care of everyone and make sure everyone is okay. You are also the most determined, sassy, stubborn strong-willed little girl. Some days you make me crazy fighting me on every little thing because you are so independent and want everything done YOUR way. Oh how much we all love you...You make us laugh. You are so funny. The things you say and do have us shaking our heads and laughing every day. You are SMART...oh so smart. But most of all you are so loving. Nothing makes you happier then crawling up in our laps to read. You love to play with your Bubba, your brudder. And your Mia...Poor Mia gets so much love that she doesn't know what to do with you. You love to read, play with your little people and take care of your baby dolls. You love animals, especially elephants and all things blue.  I cannot believe you are already 3 years old, my baby girl. I am so grateful that I get to spend every day watching you grow and learn and discover this world. I love you my little spitfire!


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!

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 angels who have blessed us over the past few months and shown us that there are good people who will help lift you when you need it. That are a reminder that we do not walk alone.

I am GRATEFUL for the HOPE of an incredible 2016!