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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Busy medical week

 The last few weeks have been a bit of a beat down medically, but I always try and remind myself that regardless of circumstance we are held by a loving Father who has a plan and uses all of our trials for his Glory. 

You know I never like to focus on the negative so I am going to start with some good first! Alex just finished the first week of classes. He has thrown himself in full force as he tends to do. He lives each moment to its fullest as he knows our time is not guaranteed better than most! He has 5 classes this semester and thinks he will enjoy them all. He has two professors that were with him on his trip to Boston and understand the extent of his medical stuff more than most. He has been asked to mentor and captain the JV team of his Esports team along with one of his best friends. 

Maddy and I just finished our second week of school and it has been really good. She has worked hard and been extremely well behaved for me. She is also back to her twice a week dance and art classes. And after a little break at the barn while we let Quigley get some new shoes and recover from his hard work at the World Show, we were back to riding yesterday and there were huge smiles all around. Maddy's tutor also reached out to let me know that she feels like Maddy is doing well enough to go back to one day a week tutoring as she no longer needs any intervention in reading and they will just work on spelling and writing. 

Okay here comes all the medical....

After 5 years of no real changes in Bruce's testing, this summer brought a few red flags. There was growth in the lesions on his kidney along with potential corresponding lab changes. His oncologist felt it was imperative to send him back to the urologist. After an appointment and some further labs, the urologist decided to take a watch and see approach and will see Bruce again after his next scans in December. He also had another colonoscopy where they removed two more polyps. We do not have results back yet, but his colorectal surgeon said he is pretty sure they will come back pre-cancerous and that he will never to go longer than 3 years between colonoscopies for the rest of his life. He does not think any further treatment will be necessary, but will reconvene after biopsy results come back.

If you have been reading our blog for a while some of this will be a repeat as I explain central lines. Alex's port (central line) is a necessary life sustaining tool. It is also what will most likely be the cause of his death one day. Central lines are "permanent IV's" that are inserted into large veins and end in the atrium of the heart. Alex has had a central line since he was 3 and it is the source of his nutrition and many meds. We also use it for all blood draws as Alex's vein access is almost non existent (like having to be stuck 12-15 times and often still no blood). While Alex's line is necessary it also carries major risk. Every time you use the line it is a sterile procedure and re-access and dressing changes require completely sterile protocol (similar to what is done in surgery). An infection causes sepsis and sometimes septic shock. Infections can happen either by mistake (not being totally sterile when handling the line) or translocation which has often been the case for Alex. In Alex's case his GI system is so diseased that bacteria can leak into his bloodstream and it likes to attach to a foreign substance AKA his line.  Okay so now here is what is going on... Alex's port is leaking at skin level. It is hard to keep his dressing on (which is necessary to keep it sterile) and also leaves his skin around the port wet which could breed bacteria. The week before school started we reached out to surgery. They did some testing and according to them the port is "working". They think his skin is so weak due to 18 years of port accesses and that is at the root of the problem. However, the leaking continues so we had to do multiple dressing changes this week instead of just one and has Alex and I both concerned. We will re-access his port today and hope it improves. We are trying to figure out the best way forward to keep him safe, but also not have to miss large amounts of class time. 

My Maddy Moo...you would never spend time with her and have any idea about all she has going on. I am not sure how she accomplishes all she does, but I am amazed by her grit, determination, and commitment to doing what she loves despite any challenges. I will start with her joints. We had an appointment with her physical medicine and rehab doctor (who is amazing). Maddy's ankles and knees are in bad shape. her joint instability is significant enough that her muscles are no longer firing like they should. She often has her joints give out on her (especially on stairs) and she has some level of chronic pain in all these joints. We are not quite ready to tackle her first major knee surgery so her doctor is going to have us use a NMES machine to try and force those muscles to contract and not lose any more muscle mass. We should have our appointment soon to get our machine set correctly and learn where we need to place the electrodes so we can do this multiple times a week at home. Maddy also continues to experience lightheadness, dizziness and migraines due to her POTS and neurocardiogenic syncope. She is on 4 medications and while it is a bit better it is still a daily issue that makes everyday tasks difficult. The biggest issue right now is some bladder/kidney stuff. She has struggled with bladder stuff for the past several years, but we have never been able to really get answers on the cause and therefore a treatment. However, some new, more concerning symptoms have been going on since May. The urologist has kind of thrown her hands up so I made the decision to take her to our beloved, amazing pediatrician because I knew he would get to the bottom of it. He ran 4 tests last Monday and we are waiting on all results before we decide next steps, but so far the 3 that have come back are not normal. I am hoping Dr. B can come up with a plan and we can get her feeling better soon.

As for me, I haven't had a minute to focus on my issues. There is no treatment (that doesn't cause more issues) for my biliary reflux and bile induced gastritis, but the medications I am on have made it manageable. I am EXHAUSTED despite sleeping 7-8 hours a night. I am unsure if it is my chronic anemia or my thyroid levels or something else, but I am hoping to get some labs soon to see if I can find a way to be less fatigued day in and day out.

If you made it this far, thank you for reading all of that. We would covet all prayers for our family and especially the kids as they try to continue to Choose joy and live life fully while managing a disease that is relentless and forces their bodies to betray them at every turn.

Ali

The link to support Maddy's barn for North Texas Giving Day!

Stable Strides Farm NTGD

NSBA World Show 2025

 As I sit down to write my blog, I am often at a loss for words or feel like a broken record, but when I started this blog 18 years ago, I knew I wanted to be authentic and share the highs and lows of our lives and give myself the space to put my thoughts and feelings on paper. It has become a record of our lives and a place I hope I can encourage others when they are going through hard times. My prayer is always that God will use me and my words to help someone not feel so alone when times are tough or show that it is possible to praise God through the good and the bad days.

This past week has been full of some of those really good days.  There is something so special about watching your children set lofty goals and then work hard and see the reward of their hard work pay off. And also to be in a space where they feel loved and valued by so many. I have always said the best part of our journey are all the people who have come into our lives and blessed us through their friendship and love. 

The NSBA World Show has always been the show with the highest level of competition and and as such carries extra weight when you do well and also more nerves as you know how difficult it is to even place at such an elite show. Maddy stepped up to the challenge this week and conquered so many fears and had the best show she has ever had at NSBAs! 

On our way

Giving Q love upon arrival

Maddy and Amy hanging the signs on the horses stalls

We arrived on August 5th and helped get the horses settled and enjoy some down time. On Wednesday maddy had her first practice and unfortunately Quigley spooked in the practice area where Mandy takes her riders. She pushed through and did manage to complete their showmanship pattern, but it was a bit of a rough start. One of Mandy's greatest strengths is truly knowing each of her individual riders and making accommodations so each horse and rider team can be their best. She is also amazing about knowing how to push through fears in an encouraging kind way while also being sure that her riders "hearts and tummies" are okay. Maddy trusts Mandy and is willing to go along with her plans, because she knows Mandy will never put her in a situation that she doesn't think she can handle. For Thursday's practice, Mandy made the decision that Maddy would go back to the same area for showmanship practice, but would not ride Quigley there.

Lila Love

Practice on the racetrack

Walking to thank Mid South Equine Sports medicine for taking such good care of our horses!

Traditional practice arenas are crazy chaos with dozens of riders all going different directions and practicing different things. It is a navigational nightmare and makes even the most seasoned riders nervous at time. Mandy spoke with Maddy on Thursday and let her know that she trusted her to handle the practice arena and use her smart brain and riding skills to get some time riding Quigley without the fear of him spooking. That practice was one of my favorite, most proud moments of the entire show. Maddy has some body language "tells" that always alert me when she is very nervous. I watched her ride her giant dinosaur in the practice arena with a calm confidence that surprised me. I truly feel like Mandy's belief in her to handle that environment boosted her own belief and helped her show so well.

Bath time for Lila

Maddy's favorite girl

Q's turn!

Hanging with Emerson

Dinner with Erin and the kids!

Friday was Showmanship day. I wasn't exactly sure what to expect. Quigley is just learning showmanship and it is a class that normally takes years to master. We have watched at the barn as he picks it up so quickly, but doing well in your home arena and performing a difficult pattern in a show are entirely different. Maddy was so proud of her boy as they walked away with a 9th place finish out of 28 entries. 

Start of Showmanship

Practice Arena

Saturday was Western Day and Mandy had made the decision to have Maddy only show in one of the two classes. Once again this is an area where Quigley is just learning and we knew one of the classes that focuses on the horses quality of movement was not a good option for anyone as Quigley's movement is that of an English horse. The second class horsemanship they still want a "western style" of movement but the scores are based much more on the rider's ability to complete the pattern and control the horse. Maddy and Quigley were far from perfect, but going out there was an accomplishment in itself. The pattern was pretty decent, but things fell apart a bit when it came time for the rail work and Q reverted back to his English trot. They finished 15th out of 21. 

Sunday was a day off for practice and a much needed break for the horses! Bruce and Alex arrived this day as well.

Early morning practice for Aidan and Maddy

Monday was trail. Once again we had no expectations as Quigley is also still learning trail. To say I was impressed with their trail pattern would be an understatement of epic proportions! They did the best trail pattern I have ever seen them do. Maddy did an amazing job communicating with Quigley and he was such a good boy and was so careful with those ginormous feet. This was one of my proudest moments of the show. They placed 9th out of 22. 

Mr. Wade is one of Maddy's show dads and Q loves him!

Lila love before Trail

Tuesday was the day she had long been awaiting! English is what Quigley knows and what Maddy loves! She was a bit disappointed in her ride during Hunter Under Saddle as she knows her and Quigley are capable of being better than they were, but she still placed 6th and she knows what they need to work on. She finished the show with a bang as she did a near perfect Hunt Seat Equitation pattern and walked away the Reserve World Champion (2nd place)! The smile on her face when we got to her was priceless. She was so proud of herself and the ride she put down at the perfect time. There was another truly special moment on this day. We have known Jenna since our first NSBA when she was a board member and volunteer at Victory. For several years we had lost touch, but we reconnected when we joined Stable Strides last year. She is a volunteer and an instructor when Mandy is out of town. Jenna has loved watching Maddy thrive under Mandy and gain so much confidence in the process. Jenna was also attending NSBA to show her horse. When we finished on Tuesday Maddy told me that she wanted to find Jenna so she could tell her in person how well she had done. It melted my heart. Jenna so clearly remembers the days when it was pulling teeth to even get Maddy to say hi to her so to want to find her and share her excitement was such a symbol of how far she has come over the past year. 

So all in all she fished the show with 4 top 10 finishes, which is by far the best she has ever done at this show! More importantly she felt good about how she competed and the way her and Quigley were able to communicate throughout. And she did it all while battling an infection and feeling far from 100%. Maddy's drive and determination are amazing and it was so nice to see all of her hard work come together!

The best parts of the week were all the moments in between. The time with teammates, volunteers and coaches. We spent the week camping in the RV park with some dear friends and had so much fun in the evenings not to mention the amazing food they grilled for us! We got to watch old friends show. We spent a lot of time watching jumping classes and English classes. We were able to visit with Erin, our beloved home health nurse who moved away several years ago and Julie, one of my best friends from middle and high school. And for the 4th year in a row one of my good friends from the medical world came to watch Maddy! We also were introduced to two amazing English riders who encouraged Maddy and took the time to visit with her. We are so lucky to have so many amazing friends and equestrians in our life who make this journey so fun! 

Maddy and Cassandra

Cassandra, Maddy, and Kristi

Waiting to walk a pattern

Emerson and Maddy

Erin and Maddy

Maddy and Amy

Maddy and Mia

Maddy and Ellie, Mandy's two redheads!

Team pic before the ice cream social

Selfie watching the show

Amy and Maddy

Maddy and Paul

Maddy with Elise!

Maddy and Allison

Her best boys!

Aidan and Maddy

Team pic before Showmanship

Alex is gearing up to start his third year at DBU! Where do the years go? He is excited to see friends and get back to learning! He truly loves his classes and professors and every part of being a college student. 

Maddy and I will start our school year at the Beckwith Academy of Excellence on Monday. 

As for Bruce, he has had a change in one of the areas we have been watching on his kidney. At this point we are awaiting follow up to know what our next steps are and how concerned we need to be.

I would appreciate prayers for the kids health as well as a good start to the school year. And also prayers for the next steps with Bruce on his cancer journey. Thank you for continuing to walk beside us as we live this crazy, beautiful life of ours!

Ali