I realize I haven’t updated since March, things have been a little crazy! We have made some progress in figuring out my health, and in some areas I have actually improved! As you can imagine there is quite a bit to update on so here we go.
Last month I got my custom wheelchair and it is amazing! It’s lightweight, easy to get in and out of the car, and I can actually push it myself! In my old chair I had to be pushed so let me tell you, the feeling of just a little independence is incredible. It even has a SmartDrive attached, so it propels itself and all I have to do is steer. This means less work on my shoulders.
My PICC line has been in for 6 months, and is still working beautifully. I am still receiving home IV infusions twice a week and those have helped me be able to go outside for short periods of time this summer. I have been spending that time going for short walks trying to get some strength back, and it’s working! My joints are in no way perfect, I still dislocate about 20+ joints everyday, but my injuries have decreased! I have even been allowed to reduce my Physical Therapy to once a week rather than twice. After over a year of doing both, it feels nice to gain an extra day of the week with no appointments.
This past weekend was the annual MAGIC Foundations convention in Chicago. We have been going almost every year since I was around five years old. Every year I meet up with a MAGIC friend of mine and it is always great to see her. We all agree this was the most helpful convention we’ve been to. Every year doctors fly from all over the world to speak on different medical related topics. We are slowly going through the process of getting me back on growth hormone shots. These will hopefully regulate my blood sugar as it is constantly too low, and help me build more muscle. We were able to talk to a lot of people and learn more about my condition. When we got home we shared this information with my team of doctors and we all agreed that something had to be done. Due to my gastroparesis I haven’t been able to get adequate nutrition since last year, and my blood sugars are dropping too low too often and it is getting to a dangerous point. We agreed the best course of action is a feeding tube. I am being admitted to Children’s Hospital tomorrow morning to have a Nasojejunal tube or NJ tube placed. This will feed me slowly 24 hours of the day so my blood sugar won’t drop. The tube will bypass my stomach and sit in my small intestine which hopefully means no pain or nausea. I will still be able to eat what I can by mouth but it will make up for the calories and nutrients that I cannot get myself. The plan is to be admitted for a few days and hopefully come home on Friday. Unfortunately camp starts on Sunday so depending on how I’m feeling I may have to stay home. I would appreciate prayers for this hospital stay to go well and for it to be short but helpful. I am going to take it one day at a time and let God deal with the details, I’m just along for the ride 😉
Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord “plans to prosper you and not to harm you, plans to give you hope and a future.”