Busy as Always

 This has been a crazy few weeks with some not so great news medically, but so many blessings in other areas. I am a little run down as I try to stay on top of everything usually at the detriment of caring for myself. I am trying to do better, but...

Let me start with the quick medical update. Maddy is having headaches almost daily. We are continuing to monitor these and are due to give the neurologist a report in a few weeks to determine next steps. She is also scheduled for her brain MRI on February 24th. 

After two and a half weeks of attempting auditory therapy communication between myself and the audiologist it was determined that Maddy needs Hearing Aids.  The audiologist told me she was pretty sure this was going to be the outcome, but likes to try the therapy first. Maddy is TOTALLY fine with this as the therapy was devastating for her. She has chosen which color she wants and we have an appointment February 9th for her fitting. 

We are still waiting on results from Bruce's Kidney MRI. I have been out of my Camp Gladiator workouts since the beginning of November because my knee started really bothering me. I tried just resting in hopes that I could get back to it. But it became clear that wouldn't work as my knee continued to bother me when walking long distances, walking up and down stairs and driving. I saw my PCP in early December and she started me on an anti inflammatory and started PT.  Unfortunately, one day at PT set me back a week with increased pain and limping. At that point we decided I needed to see an orthopedic. I have seen the orthopedic, had x-rays and an MRI and unfortunately the report was not good. I have severe arthritis and basically no cartilage left in my Right knee. I can never go back to boot camp style workouts or I will need a full knee replacement within two years. I also need a surgery to clean up what cartilage is in there because it has some areas that are snagging every time I bend my knee. I am disappointed because I will miss my community and 5 AM crew. I am also trying to figure out when and how I can manage surgery and take care of the kids. The good news is Alex continues to do GREAT medically. Which is a huge blessing.

On to the fun stuff...more and more I feel like my entire life revolves around horses, but if I'm being honest, its a pretty fun way to spend my days! We had the opportunity to go hear two motivational speakers on the 15th. One was Coach Sherry Winn and the other was Amberley Snyder. They were both amazing and had awesome stories of inspiration to share. Alex made a real connection with Coach Winn and has actually had some communication with her. Maddy knew Amberley's story and loved meeting her in person.  (If you aren't familiar watch Walk, Ride, Rodeo on Netflix). 

Alex with Coach Winn

The kids with Amberley Snyder

Maddy continues to ride multiple times a week and is gaining confidence and skills on a regular basis. She is currently riding two horses, Gabby and Blue. She loves them dearly and they are teaching her so much. No matter how hard the day has been, time with her horses brings out a smile every time. I am so grateful for the Sanctuary that Victory Therapy Center is for her. 

Maddy riding Blue

Maddy with Gabby

Maddy riding Gabby

Maddy riding Blue

On top of riding we had a few other events at VTC this past week. Tammi, Maddy's beloved coach received a promotion. Her coworker wanted to redo her office as a surprise and asked us to help. Maddy had a ball painting and decorating!

We also had an awards ceremony for the Virtual Show we had competed in back in November. Maddy did really well with one first place and two second place ribbons as well as her first high point award as Reserve Champion for her division!

These two always cheer each other on!

Besides Riding, Maddy continues to LOVE school and her ballet and art lessons with Ms. Joli. She was also blessed  this week with a Keyboard as we have been told that playing piano would be good for her auditory issues.

Heading to School

Yoga Warmup is her favorite

One last update...many of you knew that Mia hurt herself and it looked like she was going to need surgery. She has been on medication and surprisingly is no longer limping and is back to her playful self. We are not sure whether we will need the surgery in the future, but for now she is doing well and it is off the table!

Sorry that was so long!! I am so grateful for the amazing people in our lives who pour so much love into my children and have helped shape them into the happy, resilient kids they are.  Please pray for Maddy as she struggles to come to terms with all she is dealing with medically. Pray for Alex's continued good health and stability. pray for rest for me and peace as I struggle to not the stress of medical and financial strain get to me. Thank you for always being there for our family!

Ali

Medical Update

 It is rare that I post more than one update in a week (unless one of the kids is in the hospital), but I owe a medical update!

I'll start with Alex because for the first time ever, I really have nothing to update!!! Alex continues to do amazingly well and for that I am so grateful.

Bruce had his six month scans and labs in late December. His labs, specifically those looking at markers for colon cancer, were normal! The spots on his lungs and pancreas were stable so that was all good news. Unfortunately, the spot we are watching on his kidney has increased in size. He had an MRI today to get a better look and he will see the urology/oncology specialist in a few weeks to determine if any further treatment or intervention is necessary at this time. His oncologist also asked to see him back in 4 months instead of 6 as a precautionary measure.

Ms. Maddy Moo has had a busy month medically. She had an endoscopy and colonoscopy several days before Christmas to try and figure out her increased stomach pain. Visually everything looked great, however, the biopsies came back with some abnormal results. We all have four enzymes our bodies make to break down all sugars and starches. In the past, Maddy's results showed she was deficient in 2 out of the four. This time she was deficient in 3 and the 2 we knew about were even lower in level. Unfortunately, there isn't a whole lot we can do. There is a replacement for one of the enzymes. (Thank you lord for insurance! It costs $7500/month out of pocket). The only other way to "treat" is with a ridiculously strict diet which would be hard for most adults and virtually impossible for a child. Think no carbs including most fruits and vegetables. Brussel sprouts and Cabbage are okay!😛 

On top of that we completed three days of Audiology testing. Maddy was diagnosed with an Auditory processing disorder.  In simple terms, Auditory Processing Disorder is where your ears are fine, but your central nervous system doesn't use the information correctly so you can't "hear" or process the information. It is a lot of information and I am still learning everything, but Maddy will be doing some therapy to try and retrain her brain. Unfortunately, if the APD is caused by medical causes (as opposed to ADHD or Autism ) which is likely in Maddy's case ,the therapy may not help. If the therapy doesn't help or if she starts to struggle in school we will add Hearing Aids to help, but we want to take a non-invasive approach first.

Finally, today we saw a new neurologist to address her headaches, lightheadedness and multiple problems on her left side. We were really happy with the doctor and she was extremely thorough. She feels pretty sure that Maddy's headaches are actually migraines and may actually be contributing to her lightheaded episodes along with her dysautonomia. We are going to try a vitamin supplement for a month to see if that helps. If not we will be adding a migraine medication. The final issue we addressed was the fact that we have a number of problems that are worse on her left side. Upon exam there was definitely left sided weakness so she has ordered a brain and spine MRI to ensure that we aren't missing anything.

I ask that you join me in praying for Alex's continued health, Bruce's MRI results and for little Maddy. It is a lot for her to try and handle all of these appointments and therapies and discussions and not have increased anxiety. Not to mention not feeling great at times. 

Ali

Amazing Blessings

Many of you already know that Maddy had a great horse show on Monday, but tonight I feel compelled to try and put into words the emotions of this week. 

When Maddy was born I saw the most beautiful, precious angel and I dared to dream of the future that had been stolen in many ways when Alex diagnosed with Mito and became so unstable. Just a few months later when we were told Maddy also had Mito and was at a very high likelihood of one of the complications that had killed several of our friends and almost Alex, I was devastated. I felt like my world was crumbling. However it simply isn't in my nature to wallow in my pity for long. 

From day one, I have watched this shy quiet girl conquer every obstacle set before her. This little peanut who walked with a walker with the most unsteady of gaits, dances with beauty and grace. This little girl who is scared of almost everything climbs on the biggest of horses and rides with a focus and determination that amazes me.  She works harder than most know and never quits no matter how hard something is for her. She has had obstacle after obstacle in her path and yet she continues to push forward no matter what. And yet she is never alone. I have marveled as I have watched the way in which her inner beauty shines past the shy exterior and touches everyone she encounters. 

This week I saw a coach who spent nights lying awake trying to figure out how to break through the fear and help Maddy regain her love of riding. The coach who Maddy has absolute trust in. The one who loves her and encourages her on the hard days and pushes her relentlessly on the days she can do more than she believes. A coach who has not only loved my girl fiercely, but prayed over her continuously. 

Maddy thinks Tammi is the BEST! No matter how scared she is, she trusts Tammi enough to do whatever she asks! (Although she may hiss first!)

I saw the other coaches and volunteers from Victory who are always there with a hug, a quick joke to make her giggle when she is nervous and never ending encouragement and cheers. They are the ones who put up with her incessant requests to help with "her horses" whether it means tacking, grooming, mucking, feeding. They are there every step of the way helping her be her best and believe she is capable of whatever she sets her mind too.

This week those coaches and volunteers put in more hours than I can begin to count making sure the riders and horses had everything they needed to succeed.

Ginny is Maddy's comfort zone and one of her very favorite volunteers. Not to mention a pretty awesome dancer and cheerleader!

Sarah has the best heart and is Mad's biggest cheerleader

Becky loves her girl and is determined to get her talking!

This week Maddy rode an incredible horse that was so generously donated by a mother and a daughter. They then came to the show to cheer our riders on and when Gabby rolled in her stall and was covered in shavings, they were the first ones to jump in brushing her and getting her ready for Maddy's last event. 

Giving Gabby love pre-show

Western Pleasure

This week as we once again added a new diagnosis to Maddy's ever growing list, I can look around and see and feel God's presence all around us. I see it in a little determined red head who can whisper scripture verses to you. And I can see it in all those she has touched and brought into our life. My prayer for as long as I can remember has always been that my children can shine a light on God's goodness and grace in any circumstances. This week so many prayers have been answered.

You see for me this isn't about blue ribbons. It is about a little girl who works relentlessly to achieve her dreams. A little girl who doesn't let fear and pain and illness stop her. A little girl who loves with her whole heart. A little girl who's perseverance and strength and bravery amaze me daily. I am so proud of the little warrior she is.

Ali

Maddy and Emerson- Sweet teammates who cheer each other on through everything!

Happy New Year!

 2021 was a hard year for so many and for us it certainly had its moments, but as I reflect today on the past year I am overwhelmed with mostly good memories. 

This year Alex had one of the best years of his life from a health perspective

Both kids threw themselves into their passions whole heartedly...Horses for Maddy and Forensics for Alex.

Alex continued to use his story to fundraise for Cook Children's and Children's Miracle Network.

Maddy competed in her first horse show and placed 9th in the world in her class. 

Maddy started in a new school and has absolutely thrived with the small Christian environment and modified schedule.

Bruce continued to work for 7-11 and loves his job. He also remained in remission from his cancer.

I volunteered on multiple committees at the hospital and church as well as led a Bible Study and played doctor, nurse, psychologist, chauffeur and BFF to the kids.

We spent tons of time with Mimi and PopPop just living life together.

Both kids grew in their faith and continue to live life with joy, determination and love.

We went on perhaps the most amazing vacation of our lives and created incredible memories.

As we move into 2022 my prayer is that this next year is full of love, joy and more memories doing what makes us happy. I wish the same for you my friends!

Ali