Alex's Adventures: Thankful

Oh what a difference a year makes...

Last year was Mimi and PopPop's first Thanksgiving living in Texas. My mom and I had planned and prepped as it was the first time we would be spending Thanksgiving together in about 20 years. We were so excited. And then Alex got sick. And we spent 10 days including Thanksgiving in the hospital. I ate a philly cheesesteak for dinner last Thanksgiving! As we crept closer to Thanksgiving this year, I asked some of my friends to pray for Alex to stay healthy (and we may have threatened Alex a few times) and once again we planned and prepped. This year went off without a hitch. Maddy and Mom and I cooked some on Wednesday and we had a great day Thursday as the six of us watched football, played games, ate delicious foods and had a few drinks. At one point Mom and I looked at each other and said this is exactly how it is supposed to be Mother and Daughter side by side in the kitchen preparing the same recipes we have cooked our whole lives. I am so grateful for the stress free relaxing day we had!

Mimi and PopPop

Our Table Setter

The past six months as Alex has had some of his healthiest times, my little Maddy Moo has been struggling quite a bit. Although most people would never know because she goes through her days with a quiet determination and a quick smile and giggle. This child NEVER complains and continues to have a schedule which would be hard for most all of us and yet in the quiet moments when it is just us she will whisper about how much she hurts or how lightheaded she is. With this we have been to a slew of doctors appointments with more on the horizon. Let me give a quick run down (Sorry if I have already updated on some of this). Her joint pain continues to be what limits her the most. her knees and ankles hurt on a daily basis sometimes to a pain level of 7 out of 10. Recently her left hip has also started to hurt. Her left knee continues to have Subluxations (dislocations that pop back on their own) every time she straightens her knee. We know she needs surgery on that knee, but are trying to determine when is the best time. It is possible her right knee will follow the same path and also need surgery down the line. Mainly we just support her as best we can because there isn't much to do to help the pain caused by hypermobility. Our immunologist has asked one of her partners a rheumatologist to see her on our next trip to Houston because Autoimmune stuff is very common with Mito. As for the lightheadness which comes with a side of nausea and headaches, we are still working on this. The most likely and agreed upon diagnosis is Orthostatic Hypotension. It doesn't totally fit because usually this occurs just when changing position and hers happens at all different times, but we are hopeful the treatment will still help. Unfortunately, our cardiologist retired before we could start treatment. We are seeing a new cardiologist this coming week to hopefully get started on the right path to get her feeling better in that sense. We also have an appointment with a neurologist in January as when you have dizyy/lightheaded spells and headaches you should also rule out scary things! We also had an appointment with our endocrinologist because Maddy's thyroid levels continue to be off, but not really to a level you would treat. We will recheck levels in February. And we have some GI issues going on that seem to be new and/or reoccurring. I have a message in to our GI because we likely need to rescope. Lastly, Maddy has been absolutely thriving in school, but we noticed significant struggles with spelling. After trying several interventions, we proceeded with testing and she has been diagnosed with dyslexia, dysgraphia and a likely auditory processing disorder. We are scheduled for further testing with the audiologist in January but in the meantime she will be starting to work with a tutor two days a week to help her. I say all this partly to ask for prayers, but also so you realize when you see her sweet face and her bright smile you realize how much is masked behind that. It is so easy to take people and their emotions at face value, but so often there is so much more that goes unspoken. Be kind!