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