What a Week

 This past week has been a whirlwind! What an amazing experience it was for maddy and I to attend the All American Quarter Horse Congress. These last few days reminded me once again how special it is be surrounded by amazing equestrians who are even better people!

This was a week Maddy has been dreaming of for the past 15 months. While there were some hard moments, there were more fun times and big smiles.  It was a week we won't soon forget.

Maddy competed in 5 classes and walked away with 3 top 10 finishes in the deepest competition she has ever faced. I walked away with my heart full as I saw my girl push through the tough times to make her and Quigley the best they can be and be supported by friends and teammates. Watching the Equestrian with Disabilities classes and events is truly special. These riders are incredible athletes and fierce competitors, but even better friends. They encourage one another, they cheer each other on, and offer heartfelt congratulations despite their own disappointment. We could all learn from them. They epitomize what good sportsmanship should look like! Enjoy our week through pictures!

Quigley was so happy to see Maddy

EWD Welcome Dinner

Two Jesus Loving Horse Girls

SSF Team after dinner

Mason and Maddy

Robert giving Maddy a massage after a hard practice

Jackie doing Maddy's makeup

Showmanship Reserve Champion

Best Volunteer and Show Dad

Dinosaur Horsemanship

Trail

Maddy and Amy

The three Musketeers

Maddy and Erin always try and retire to the wall near each other

Happy girl after English

Quigs loading up to head home

A job well done!

Choosing Joy through the Storm

 We are still in a season of not the greatest medical stability, but through it all my kids continue to find moments of joy and light. I am always proud of my kids, but never more so than when they continue to shine despite not feeling 100%.

My sweet Alex, my bug...He is so easy to love and so quick to step up for others even when he isn't feeling great. Our relationship is so very special and comes from walking side by side through incredibly hard circumstances for most of his 21 years. We know each other and can read each other better than anyone else in our lives. And best of all we truly enjoy each other's company. We laugh so much when we are together. It is so special to watch him live a life we never dreamed possible and he never takes one moment for granted. He is having a great semester at school. He loves his classes and professors. He is the co-captain of the JV Esports team and a sub on the varsity team as well as commentating the varsity matches. He has been playing some pickleball with friends. And is double majoring in Psychology and History in the honors program. He was also able to enjoy lunch and hear Nic Vujicic speak at school. To say he lives his life to the fullest is an understatement. We have also found an amazing PCP who specializes in transitioning complex medical kids to the adult side medically. We had our first appointment this week and are both feeling so lucky to find a partner to advocate for Alex and make sure he continues to thrive. He has several tests and infusions this week as we make good use of his time during Fall Break!

Alex and Nic

Alex's jersey

Poor Maddy is still struggling a bit. Unfortunately the special urine test that we had hoped to guide treatment and a path to feeling better did not give clear cut answers. She continues to be extremely fatigued as her Kidneys struggle to work properly. After missing all dance and more than half of her rides for several weeks, she has tried to jump back in this week. My heart is sad for her as she is struggling to participate in her favorite activities, but she is adamant she will continue to push through. I treasure the smiles when she is at the barn and her best boy makes her forget how bad she feels even if she can't last as long as she'd like. And in true fashion both Hart and Quigley must be sensing she isn't feeling her best because they have both been extra snuggly with her! 

We did have one exciting development this week...after communicating for several months with Team Impact (TI matches Children with serious illness with college sports teams) she was signed on to the TCU Cheerleading team. While she had initially hoped to be matched with an equestrian team, she is actually thrilled to be with the cheerleading team. TCU Cheer has 41 cheerleaders, but she has a small group of 6-7 that are her group. We attended their practice on Tuesday and she loved every minute. She didn't participate just got to know them and watch, but is hoping her girls teach her a cheer next time! She even has a group chat going with them! Later this week maddy and i are leaving for the biggest horse show in the country, the All American Quarter Horse Congress. She has been looking forward to it for a year. Please pray she feels good and can enjoy her time!

Thank you for loving our family!

Ali

Rough few weeks

 I am not going to lie, this past few weeks has been a little rough. But even on the days when things don't go our way or we have more questions than answers, we know we are held and loved. So we can always find the beauty and the joy regardless of our circumstances.

Alex's port is still leaking, but he feels okay so we are just trying to march along until Fall break as he hates to miss any class time. He is loving his classes this semester. His professors are amazing and he enjoys all of them. He has made some new friends and continues to enjoy all of the "extras" that college has to offer. I am so spoiled that my boy loves to share all the things so I get an inside view into all he is learning and doing. Our relationship has always been close and special and even college has not changed it! This week Bruce and Alex enjoyed a soccer game and he went with his Honors classmates to the symphony. I continue to see so much improvement in his organization and maturity and especially his time management as he has learned to balance work and fun and medical demands and get it all done. 

Alex and Bruce taking in a soccer game

Alex and Sam, the Assistant Director of the Honors program and one of Alex's favorite people

This is his second symphony and the Opera House is gorgeous

Oh my poor Maddy...it has been really hard for her this past few weeks. Her kidneys are not working properly (due to her Mitochondrial Disease) and it is taking a toll. She has had all of the symptoms of a UTI, including blood in her urine for most of the past 6 weeks. We have done multiple urine cultures and all but one have come back that it isn't a UTI. So our amazing pediatrician has referred her to nephrology (but can't get in until November) and has continued to order more and more testing. As we are putting the pieces together we know that she hasn't had a "normal" urinalysis since April. During this same timeframe we have watched her endurance decline drastically and fatigue and feeling unwell take over. She is only lasting about 45 minutes for each lesson at the barn (she used to ride 2 hours and would do more if wee let her). She has also had to miss her last two dance classes because she doesn't have the energy to do any more. Dr. Benzick and the nephrologist have been in communication and they believe she has Renal Tubular Acidosis which is somewhat common in Mito. basically, the kidneys are unable to remove acids from the blood into the urine. This makes the blood too acidic and the urine too alkaline which leads to the formation of kidney stones. All testing up to this point supports this diagnosis and an ultrasound yesterday revealed multiple kidney stones. The acidosis is what causes the fatigue and headaches she is experiencing. Unfortunately we need to complete one more test before we can confirm this diagnosis and thus begin treatment. I am so very grateful for Dr. Benzick as he truly has walked beside me and supported my kids from day one. I could not ask for a better doctor to be there for my kids and pick up the ball when we need him to. I am also thankful for Mandy and Joli who love my girl so well and have been extremely flexible as we try to get her feeling better so she can enjoy all her favorite things again! And our best boy, Quigley....he has been one of the few sources of smiles and her time at the barn has been the only time she can distract herself from the pain and fatigue she is dealing with.

In the midst of all this, I have also been undergoing some more testing as some hope of a diagnosis came from the most unexpected of sources...an allergist. I have struggled with awful allergies all my life and finally decided I needed to see an allergist after many years since my last appointment. As I gave him a history of my allergy struggles, but also filled him in on some of my issues over the past few years, he became convinced he  may have an answer. He believes i may have either Systemic mastocytosis or Mast Cell Activation Syndrome both of which can explain the puzzle that hasn't made sense. We are still waiting on the mast cell testing to come back, but in the meantime I had to go off all allergy meds for a week to do allergy testing. My PSA for the week is DO NOT STOP ALLERGY MEDS DURING RAGWEED SEASON!!!! I was a hot mess as my friends at the barn can confirm. I completed testing this week and was allergic to all but 4 of the 56 things they treated me for. So I will be restarting allergy shots soon.

At this time I would ask for prayers for Maddy to feel batter and get back to living her best life and for Alex's port to behave until we can  get it figured out.

Thank you for walking beside us and supporting us during the good and the bad times.

Ali 

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