Medical update and Pictures

 I need to provide an update on Maddy and her labs that I received earlier this week. But as we have some new friends in our life I want to back up and give a little history. By the time Maddy was born we knew it was possible that she would also have Mitochondrial Disease like Alex (there was a mistake made in our genetic testing, so we got pregnant and then found out Bruce and I both carry a mutation for Mito). At 2 months old, Maddy had a high fever and a bacterial infection. At 6 months, she had an abscess and a second bacterial infection. At that point our pediatrician told us it is extremely rare for an infant to have two different bacterial infections in their first six months, and he was pretty sure her immune system was not functioning correctly. That coupled with her already apparent developmental delays made us aware that it was likely she also would be diagnosed with Mito. At 9 months old, she became extremely ill and was hospitalized. That hospitalization and a follow-up with our pediatrician quickly became scary when we realized that Maddy's body was not making Neutrophils. Your neutrophils are one of your white blood cells that help fight infection. They should be over 1500 and Maddy's were 20. For the next several years Maddy was very closely followed by Hematology and had to go to the hospital for any fever over 100.4 as she was at a very high risk for sepsis. Her body just couldn't keep up and we started her on an injection three times a week to "force her body to make neutrophils". We were eventually able to wean off those shots, but other parts of her immune system were also not functioning, and she was started on a weekly infusion which involves two needles in her legs that runs for 2-3 hours every week. A number of years ago our immunologist checked some more specific immune labs and called me very concerned as Maddy was still not making many of the cells necessary to fight illness. Those labs were repeated earlier in January and her immune system continues to show severe deficits. We are still waiting on a few more labs, but so far out of 16 tests, 13 were significantly out of range and two of the "normal" ones don't have a reference range for her age but based on Alex's reference ranges those would also not be great. In the grand scheme it doesn't change much as we have known she has an immune deficiency. But sometimes it is a hard pill to see the stark reality in black and white. We will continue to do all we can to help her live her best life and be incredibly grateful for our time doing what we love and do we all we can to support her body. I am constantly reminded what an incredible fighter this little girl is. She lives her life with a perseverance, a determination, and a strength that most could only aspire to. She is the hardest worker in all areas and continues to accomplish more than she should be able to. 

Now to the fun...her accomplishments as an equestrian are one of the greatest examples of what can be achieved even when all odds are stacked against you. These amazing photos are from the professional photographers who are so generous to take their time to capture these moments for us at the Chisholm Challenge 2 weeks ago!

Showmanship

Hunter Under Saddle

Hunt Seat Equitation

Halter

I would ask for your continued prayers for Maddy and Alex. They are both loving this stage of life and want desperately to stay as healthy as possible so they can keep living life and chasing dreams. I would also ask that you pray for Bruce and I and the kids doctors as we continue to make decisions in treatment and care that supports their struggling bodies' while also providing them the best quality of life.

Ali

New Year, Same Busy Life

 2025 has begun and we are back in full swing as we get used to our crazy schedule once again! We love the life we are blessed with, and this has been a time of really putting our energy into our family and the things we love. Maddy and Alex took the last 2 weeks to enjoy each other before Alex starts back to school. Maddy is spending time getting used to having to do schoolwork again and working with Quigley to prepare for several upcoming shows. And we all decided to enjoy the rare snow and play together.

Alex is excited to get back to classes and is looking forward to this next semester. His load is much lighter, and he is taking all classes he expects to enjoy. He has made such amazing connections with peers and professors at DBU. I love to hear how excited he is to share all he is learning and doing. He spent his break resting and hanging out with all of us watching shows and movies and playing games and reading books and just relaxing and renewing his energy for this semester. He loves his family and especially his sister and this long break was exactly what he needed!

Alex with one of his favorite professors!

Alex loves Maddy well and is such a sweet, loving brother.

Maddy continues to thrive at the barn. I am watching a joy she lost be restored and a confidence and fearless attitude replace an anxious and fearful demeanor. We love our new barn family and the fun times we enjoy at the barn and shows. There is so much camaraderie, joking, laughter and fun that even the long days are so much more enjoyable. We have made really amazing connections with other riders, families, volunteers and coaches and feel completely part of the family despite our short time at Stable Strides. I am so grateful for where we landed and the way Maddy and I have been embraced and loved. It is really beautiful to watch Maddy thrive in this environment. In the past she would often cry at lessons and shows as she was overcome with fear and almost exclusively did private lessons as being in the arena with other riders was especially scary for her. Now she smiles through each lesson and has not cried at a show since our very first show with Stable Strides. She is often in group lessons with 5 or 6 others, and it doesn't faze her in the least. While she loves all of her time riding, she lights up when it is time for English or jumping with her big boy. She has developed such a trusting relationship with Mandy, her coach. She feels empowered to be honest and use her voice to speak up for herself which is something I did not expect especially this quickly. As a mom I love every moment of watching her grow and flourish doing what she loves...but I will be very happy when it is a little warmer at the barn!

Quigley is the biggest Goofball

Mandy calls Q a skittle loving dinosaur and I'm not sure there is a better description.

Maddy always finds time to love on her Lila Bean.

Watching these two shine in Hunter Under Saddle was so fun. She rode BEAUTIFULLY!

Thank you for continuing to love our family and walk with us through the highs and lows as we continue on the path God chose for us. It is certainly not a "normal" life, but it is a beautiful life, and I am forever grateful God chose me to be the mom to these two special children!

Ali

A New Year!

 Happy New Year!!!

As I spent some time reflecting on 2024, it was truly a mixed bag. The first half of the year was one of the hardest I have ever endured physically and emotionally. I experienced pain, loss, betrayal, sadness and self doubt, but I was reminded that God works all things for good and to fulfill a purpose. By the end of the year we had new friends, I had started a path to healing old hurts, we have been on adventures and have so much joy and peace that are once again the focus of our days.

My children never fail to amaze me, but they have grown so much this past year, and I have loved watching them be confident in trying new things and living their best lives. From the time I was a little girl my dream was always to be a mother and while motherhood has often not looked like I expected, I love being a mom and having an inside view to all the things my incredible kids conquer and the perseverance and joy they bring to every challenge. Their relationship is truly special. They love each other so well and through all of life's ups and downs they support and encourage each other so beautifully. And oh my gosh is there a lot of noise and laughter in my house when the two of them get going!

We loved having Mimi here for two weeks and spending Christmas remembering all the fun times we have had through the years. It is always hard to say goodbye, but the distance also helps us appreciate the time together so much more.

The kids and I have had a slew of appointments over the past month and are ready to have a break from doctor's appointments for a bit. We have tried to really enjoy these weeks that are a bit slower without school and some of our other regular activities. 

Alex is getting ready to start classes again at the end of this month. I cannot believe he is already in the second half of his second year! He continues to excel in school and has great relationships with his professors and friends. 

Maddy is gearing up for 4 horse shows between now and mid-March! She is loving riding sweet Quigly and finds time each day to give her Lila some snuggles!

Lila will always have a piece of Moo's heart!

Quigly is sweet and goofy and we love him so much!

Lila Snuggles

All in all, 2024 was a year of growth for all of us and the reminder that difficult roads often lead to beautiful destinations. We are so happy for the journey and where we are now surrounded by love and laughter!

Ali