Day 24

Yesterday (day 24) was another AMAZING day! Kylee slept all night and woke up refreshed and ready for another day of AIMS testing and school. I didn't get a single phone call from the nurses office. I did get an email from the nurse, but that was only to inform me that Kylee had lost a tooth and she wanted me to know about it. Haha! Silly girl. She never tells me when she has a loose tooth anymore because she's afraid David will find out and pull it. She's funny!

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So she lasted all day at school and then we went to her first physical therapy appointment at 4pm. It was a good visit and Kylee had fun doing all the stretches and exercises. The physical therapist is great. He worked with pediatric therapy for the first 7 years of his career. The youngest Guillain-Barre patient he had ever worked with was 11, so Kylee is definitely the youngest he has seen. But he also said that Kylee is the "healthiest" GBS patient he has seen, meaning that she is in the best condition he has seen at this stage of GBS. He was also very blunt with me and said that it is still very early in her diagnosis. He has seen patients dramatically digress within the first 30-90 days of the diagnosis. So he warned me that Kylee is definitely not out of the danger zone yet. I understand this but I also know that her neurologist isn't too concerned. That doesn't mean that Kylee won't digress, but we are very hopeful that she won't. We will still keep a very close eye on her and take every little sign and change she makes seriously, but she is doing so well right now and we are rejoicing in her progress and focusing on moving in this direction.

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The physical therapist showed me some stretches I can do on Kylee at home and that if we keep that up, he should only need to see her once a week. I'm glad we will see him at least once a week because he will be able to see the signs and symptoms if she does start to digress. And he can work with her to help her progress and get stronger. I feel comfortable with him and Kylee really likes him and has fun.

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After physical therapy, I took Kylee to her first softball practice in 3 weeks! Her team was so sweet. They all signed a softball and wrote her letters. They all hugged her and had a team cheer for her. It brought tears to my eyes. Kylee is truly surrounded by so many amazing people! It made her feel special. She did great at practice, but her strength is definitely lacking. She couldn't throw the ball nearly as far as she used to and she couldn't swing the bat as fast or hit the ball as hard as she used to. It's going to take time for sure! But I'm just so glad she is getting back to her normal routine and activities and feeling like an active kid again. It makes me so happy and I know it makes her happy too.

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No pain whatsoever yesterday! Not even a little tiny episode of pain. It was an amazing and very productive day. She slept all night without a peep as well and woke up refreshed and went off to school for another day of AIMS testing. We have an appointment with the pediatrician today so they can go over and start to treat her H. Pylori virus and Epstein-Barr. So we'll see how that goes and I'm very interested in hearing what the doctor has to say about those.

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So thankful for another great day and for the progress our strong girl is making! Love her so much!