Maddy's Recital

 I continue to be so grateful for the influences in both the kid's lives. They are surrounded by loving, caring adults and friends who make our lives so much better! It was another busy week for my Maddy Moo. She had her class party, horseback riding and her Christmas Ballet performance. This will be a short update full of pictures! 

We bought a new tree and it is BIG!

Horseback riding is exhausting!

Maddy and Brookie

Maddy has the SWEETEST Teacher and friends!

Riding Lexi

Mad and Kasey

Last rehearsal

When tutoring it is best to have a buddy

Tammi is the best coach and Maddy's favorite person!

Riding Te

My beautiful Ballerina

Maddy is so lucky to have Ms. Joli loving her and encouraging her!

There is so much I could say about Maddy and the journey she is on, but this sign is the perfect description. Life isn't easy for Maddy. She is often nervous and yet day after day she works hard and pushes herself to be her best. Little by little we are seeing the fearless warrior buried deep inside come to the surface. I am so excited to see what the next year holds for this girl.

Thank you to everyone who gives so much of their time and energy to show this little girl that she is loved and she is amazing.

Ali 

Busy, always Busy!

 Where, oh where do our weeks go?

Mostly, I spend my weeks getting Maddy to all her activities and fitting in medical treatments and doctor appointments in my "spare" time along with a pretty busy volunteer schedule! We laughed this week that I need to fix up one of the buildings at Victory therapy Center so I can catch some sleep while I am there!

Maddy continues to LOVE school and was awarded Student of the Month for November for being "Involved in Righteousness". Her teacher spoke beautiful words and Scripture over her (which you can read below). Her school has been such a blessing this year. 

She has also spent the past few weeks riding a "new" horse that she is head over heels in love with. He is the biggest (yes bigger than Hunter), fastest horse she has ridden, but she is doing amazing on him and is showing us some of the confidence and assertiveness we have been trying to pull out of her!

One of Maddy's favorite volunteers has named herself the "Moo crew"

Have I mentioned the love at VTC?

Her Ballet recital and art exhibition is this week and while performing is not her favorite she loves her weekly time with Ms. Joli and continues to show beauty and grace as a dancer. (lots of pictures next week)

We have also been busy with Christmas festivities and our first Christmas Party. And my sister and her family came for a short visit. It was so fun to spend time together after not seeing them for the past 3 years!

Maddy's first time riding in a Go-kart

Sonny and Alex have so much love for each other!

Alex continues to take multiple Forensics and Criminal Profiling classes and has really found what he enjoys learning about!

Medically Alex continues to do well. We are making headway with Maddy Moo. We saw our new cardiologist. We came up with a diagnosis that makes a lot more sense and have several steps of a treatment plan. We also saw GI and Maddy will be having an endoscopy and colonoscopy the week of Christmas to try and get a handle on her GI issues. We have also started tutoring for Maddy's dyslexia/Auditory Processing and restarted Physical Therapy.  Bruce is coming up on his 6 month scans. We are hoping that they will be good with no changes or cause for concern. 

In PT you get to ride backwards!!!

We ask that you pray for continued health for all during this holiday season.

Ali

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! 

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. 

Ali