Alex and Maddy

Alex and Maddy

Saturday, November 27, 2021


 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! 

Best Buds

Stylish even for Doctor's Appointments

Maddy getting love from Sarah

Riding Blue for the first time!

Maddy loves doing life with Mimi and PopPop!

When you are having a bad day you take your dog and your wheelchair...

And your brother/BFF!

Please pray for answers for Maddy and continued good health for Alex. 


Saturday, November 13, 2021

An Uneventful Week

 The last 10 days since I last updated have been somewhat uneventful, however still crazy busy! Somehow I always think that life will slow down and allow me some moments of rest, but they never seem to come!

Alex continues to do well health wise. He was so excited and grateful to everyone who donated as he met his goal for Extra Life this year. Over the past 6 years Alex has raised $20,000 for Cook Children's just through Extra Life. That is no small feat and we are extremely proud of his desire to give back to the hospital that has improved and saved his life. The hospital nominated Alex for a philanthropy award in Fort Worth. He was not chosen as the overall recipient however, he was honored at a luncheon this past week. He continues to enjoy his Forensics/Criminal Profiling classes and continues to add more classes to his schedule in this area.

Alex and Erin

Gaming hard on Game Day

Being honored for his philanthropy

Maddy keeps me so busy! She is doing amazing at school. Trinity Prep has been such a blessing. She loves her teachers and her classmates and looks forward to her days at school. A few months ago we realized that while she was breezing through all of her other subjects, she was struggling horribly with spelling. We tried some changes, but nothing helped. This week we did some testing and it appears that she has dyslexia and dysgraphia as well as a possible auditory processing disorder. The psychologist said she has been able to do so well because of her intelligence. I am so glad I trusted my gut so we can get her help sooner rather than later. Maddy continues to love her private ballet and art with Ms. Joli and is working hard on several dances for her Christmas Performance. Her passion continues to be her horses and her time at Victory Therapy Center. She has developed strong, trusting relationships with her coach and the volunteers as well as the staff. They all continue to work with her to help her build confidence. She is such a good little rider. We wish she would believe in herself as much as we all do. We are still working on a treatment plan to treat her dizzy spells and low blood pressure. And we are trying to figure out when the best/right time is to do knee surgery. 

Celebrating Halloween a few days late at VTC

Getting ready to film an English Pattern for her Virtual Show

Time for Western

Victory Lap

Mad and Tammi at Wine and Equine

Happy to be dropping off at school

Fun day with a LONG Trail Ride

Sweeping the barn race

Maddy with two of her close friends

Sometimes after an amazing lesson, your coach lets you teach her next class...
to one of your favorite volunteers!

As for Bruce and I....Bruce is doing well. He loves his job. I stay incredibly busy between the kids care, activities and quite a bit of volunteer work. I am good other than being exhausted most days. 

Thank you for continuing to love us well as we journey through this crazy life..


Tuesday, November 2, 2021

An Amazing Weekend

 We had such an amazing weekend! Rather than try and post a ton of pictures on Facebook I decided to post here so I could photo dump all in one place!

Saturday Morning started with a Trunk or Treat hosted by HopeKids. We had so much fun seeing friends and playing games!

Next was training with Hart. This was a week Maddy and Hart have worked hard for. They performed their public access test! I am so proud of how hard Maddy has worked with Hart to prepare.

Sunday was Halloween and Maddy's Birthday. We started with pictures and then had an awesome time at a party with her friends and trick or treating. She decided this was her best birthday ever!

Thank you to everyone who helped make this weekend special for this sweet girl!