Mitochondrial Disease Awareness Week

 Each year for the past 15 years I have met this week with a bit of dread. I don't really want to be a part of Mitochondrial Disease Awareness Week. This isn't really what I thought life would be and it is a diagnosis that has robbed our family and so many we know from so much. So I will give my quick blurb and then I am going to move on to the blessings in our life which I would much rather focus on. 

Mitochondrial Disease (Mito) is a progressive, genetic disorder that effects each individual differently. Mitochondria are found in all of our cells except our red blood cells. The degree to which any person is effected depends on how many cells are defective and the extent to which they aren't working. Our mitochondria are responsible for converting our food and oxygen into energy to allow our bodies to function. 

This is my favorite graphic because I think it is an analogy we can all understand. Most people cannot begin to imagine our day to day...Both kids take dozens of doses of medications, are sustained by nutrition they do not eat (Maddy through feeding tube; Alex through his port) and are stuck with multiple needles a week. Maddy is followed by 13 doctors and Alex 15. Their care is around the clock and disrupts all of our sleep more nights than not. They have missed out on so many activities, holidays and "rights of passage" through childhood. This disease robs children and families of the life they should have...and yet there is so much more!

My greatest joy and blessing is being the mother of Alex and Maddy. I have no idea how or why God chose me to share these kids while they are on this earth, but it is an honor. Maddy and Alex have the most beautiful relationship I have ever seen. It is pure love and trust and friendship. They help each other and encourage each other. They console each other on the hard days and laugh through the good days. My kids show more strength, courage and perseverance each day than many do in a lifetime. They smile through chronic pain and push themselves to truly live life rather than just exist. 

If you had asked me 15 years ago about hope for the future, I'm not sure how I would have answered. But Monday Alex and I spent our whole day at TCU visiting a university he hopes to attend full time in the fall. I did not believe this was a possibility even two years ago. Instead of worrying about life and death we are talking through majors and realistic expectations as he thinks abut careers. 

Maddy is also pushing beyond expectations. Maddy's joints, bones and muscles are greatly effected by her disease. She also has several GI conditions that make gaining weight and with it muscle almost impossible, however she has chosen to ride thousand pound plus animals. She has shown us that she has a huge heart and a warrior spirit that allows her to excel beyond what she should and is an amazing equestrian. 

And so as I think about this week and the path we walk. I am once again reminded that life holds no guarantees for any of us. But I also live knowing that this is not our forever home. We are just passing through. And so I will continue to look around and see the many blessings around us and praise God that he allowed me to borrow these precious angels for however long they walk this earth. 

Ali

Medical and Riding Update

 It has been a bit of a crazy two weeks and I owe some medical updates as well as an update on Maddy and her riding!

We have had a slew of appointments for both kids over the past week or so. First up was pulmonology for Alex. This was a pretty easy appointment. Alex's pulmonary testing has been very consistent for years. The basic testing looks pretty good. His "strength" to inhale and exhale is horrible (looks like he is in failure), but her has figured out a way to compensate for that. We discussed next steps as Alex prepares for college and decided we would be prepared to add interventions if necessary at that point. Next up was GI for both kids. Once again, Dr. O was thrilled with how Alex is doing. He is still experiencing pretty significant colitis that not unexpected after a total colectomy, but is other wise doing great. He is concerned about Maddy's weight as well as her broken foot. He ordered a dexa scan to check bone density and a number of labs and we spent some time with the dietician to adjust her tube feedings in hope of getting some more weight on her. Maddy also had an appointment with her neurologist. We discussed her migraines, dizzy spells and visual episodes. We were both in agreement that the visual issues are likely auras for the migraines. We are going to give the increased feeds a chance to get her in a better spot nutritionally and with fluids before we increase her migraine medication. We have a plan if she is still having these problems in a few weeks. Last up we took a trip down to Houston to see Dr. K (Mito specialist) and crew. She was so happy with how far Alex has come from the many years of instability and severe illness when we were unsure what his future would look like. She told him she was so proud of him for continuing to push himself to have a life when it would have been easy to just give in. She didn't make any changes with Maddy, but acknowledged how much Maddy has going on and many of the same issues that were debilitating or progressed with Alex have been managed so quickly and aggressively by our team that she is having a better outcome. Other than that the only other medical update is Maddy's foot. She is finally doing a little better, but it hasn't been easy. After getting her cast off she continued to have pretty significant pain and limp until just a few days ago. She should be fully healed by the end of September. If she continues to have pain past that point we will revisit with the orthopedic.

As for horse back riding...Some of you may have noticed that there has been a lack of pictures of Maddy Moo on a horse since her show! Tammi, Maddy's beloved coach, made the heartbreaking decision to leave Victory Therapy Center. While we didn't know where or how Maddy would continue to ride with Tammi, we trusted that God would provide a way for these two to continue to work together. After several weeks of uncertainty and lots of prayers, we are about to begin a new adventure together. One that we believe will be grounded in faith and love and allow Maddy to continue to grow in her riding and more importantly in her confidence under Tammi's tutelage. 

Otherwise things are moving along...Alex has begun applying for colleges and we have some more visits planned. He is taking several more Forensics/Criminal Justice classes online and work on being medically independent. Maddy will begin ballet and art again this week and is loving her school and friends. I am doing two bible studies and continuing to volunteer as well as all my jobs caring for the kids. Bruce continues to love his job and is back playing soccer with his longtime team.

Please pray for continued health for Alex as well as over his transition to college. Pray for Maddy to feel better and be able to gain some strength and get ack to doing what she loves most. We would also covet prayers as we begin our new journey. Prayers that our new barn home is filled with love, is grounded in faith, and is the perfect place for Maddy to grow.

Ali