A whirlwind month

 Gosh has this month been busy...4 days after returning from Dixie National we loaded up again to head for Houston and some appointments. We were lucky to plan these appointments around a horse show. So While Maddy wasn't showing, we were able to spend time after our appointments with teammates and friends and help Mandy some too!

We had an appointment with our cardiologist as well as some cardiology and immune testing. The takeaways were that while the three medications Maddy is on for her blood pressure and heart rate are helping, but her vitals still aren't where they need to be. Her heartrate runs very high, but is down from about 110 resting to closer to 100. Her blood pressure is still too low with her "normal" being 90/60. Dr. N has asked us to add a noon dose of one of her medications. He also strongly urged her to continue working on getting more fluids in and wearing a colling vest during the summer.

While none of this is new to me, I have two children with two very different personalities and at times it is a struggle to figure out how to balance what is best. While Alex had some down times, for the most part he was completely compliant and very much willing to follow any medical advice. While he has anxiety, I wasn't overly worried about his mental health because he is very much like me and can always find the positives and just keep marching. It is a little harder with Maddy. She is very opiniated and stubborn and very much does not want to have medical issues. From the time she was two she would say in her baby voice "I don't want to be medical".  Both her personality and also a bit because she is female she desperately wants to be "normal" and fit in. It is not easy to convince her to do what is best medically because at time she is adamantly against it. And I worry about forcing her and how that will effect her mental health. So I am constantly trying to balance physical and mental health as I decide how much to fight and how hard to push with certain treatment plans. Please pray for me to make the best choices and for her to be agreeable as we try and get her as healthy as possible so she can keep living her dream.

After appointments we were able to meet up with our team and be a cheerleader and volunteer. Mandy gave Maddy some real jobs and Maddy was amazing at helping her teammates be their best for the show. When she wasn't helping Mandy, she was in the stands keeping an eye on her teammates and cheering them on. It is important to me that we never lose sight of being kind, showing good sportsmanship and rooting for our friends and fellow competitors. I love that she is learning to be a team player while she improves in her equestrian skills.

Alex is hard at work in school and handling a heavy load as he is just a year away from graduating with a double major in history and psychology. He loves every minute and is already thinking about his next steps. It is truly magical to witness the miracle of his life each day. 

We are glad to have a break from travel for a bit as we get back to a normal schedule. The first two months of this year have been crazy and we are ready for a little down time before our next adventure.

Ali

PS- We could use some prayers for Maddy Moo. She had an awful headache when we got on the road yesterday. When we got home her temp was 101.8. She asked for her infusion (which always tells me she feels bad). She woke up feeling better this morning, but her temp is back up again. I am not sure she is even sick...when your mitochondria don't work they "they spin their gears and heat up" so sometimes a fever is just from overdoing it. Time will tell!