Laiyla Update

Hey, everyone! I hope all is well with all of you today! I realized this morning that it has been a while since I’ve given an update on our sweet Laiyla with her AFM and the progress on her arm. I will do just that today.

For those of you who are new to the blog, this past fall my daughter was diagnosed with Acute Flaccid Myelitis (AFM). This is a very rare disease that the doctors really have no idea or knowledge about. They don’t know what causes it and they have no known cures, treatments, or preventions. So far, everything they have tried on people with AFM has basically been an experiment. We are kind of taking it one day at a time for her recovery. That’s about all we can do!

Anyway, back to Laiyla. She has been doing amazingly well! When we were down at the Children’s Hospital in the Twin Cities, the doctors didn’t give us much hope at all. I’m sure they do that so as not to get people’s hopes up and then end up crushing them later. I don’t know. But either way, they didn’t sound very optimistic. When Laiyla was first diagnosed, she couldn’t even lift her arm off the bed. She had next to nothing for grip in her right hand. She couldn’t hold a spoon in that hand to feed herself. She couldn’t even write. That was probably our main issue at the beginning. She’s right handed and didn’t want to get behind in school. She had some pretty ugly penmanship papers for a while! At the beginning, the doctors told us that we shouldn’t expect much, if any, of her movement and strength to come back. They pretty much told us that she was going to be without her right arm for the rest of her life.

Laiyla heard what the doctors were saying. We wanted to make sure that they told us everything in front of her so she could ask questions if she wanted to. As soon as they said she wouldn’t get use of that arm back, I saw something in her eyes.

At first, it was a quick flash of horror and sadness. Tears started brimming in her eyes. That didn’t last long though. We immediately asked about physical therapy and what it would do for her, if anything. The doctors didn’t seem to think that it would do much good, but we could try it if we wanted. As soon as she heard that, I could see the look of sadness go away and a look of curiosity and determination take its place. At that moment, I knew she was ready and willing to fight this horrid disease. She is, and always has been, a fighter. She was determined to beat this.

Ever since that diagnosis back in September, she has been working very hard to regain her mobility and strength. And it has been paying off. She has been doing physical therapy two days per week since diagnosis. And I can’t get over how well she has done and how far she has come! I’m so proud of her! The beginning was a little rough and super slow, but then she hit a massive improvement! It’s like something just all of a sudden clicked with her nerves. The inflammation had gone away in part of her spinal cord and she made a huge improvement in her range of motion. I can’t tell you how excited and surprised we all were!

Her main concern, at the beginning, was that she wasn’t going to be able to play violin again. That was what saddened her the most. I would say it wasn’t just “saddened” it was “heartbroken.” She absolutely loves to play the violin and make music. A few weeks after she was in the hospital, she had gotten some movement back in her arm. She decided she wanted to try to play again. Even if she couldn’t lift her arm to play like she wanted, she wanted to try to at least hold her bow in that hand and pull it across the strings. And pull it she did! We decided to call her violin teacher and ask him to look at her to see if we could adjust anything to allow her to play.

The next week, we brought Laiyla to our normal lessons to see what we could do for her. Our teacher watched what she could do and gave her some things to try. He adjusted how she held the violin. He placed it farther down on her left bicep so she could reach the strings easier with her bow in her right hand. He also had her slouch a little bit to bring the violin more to her bow. Yes, bad habits, I know. But it worked! He was so excited to hear her play again!! It was still quite raspy and screechy, but she played. She cried with joy when she finished her first song. She was exhausted after one song, but SHE DID IT!!!

I think that was the first big hurdle for her to get over and the first big milestone to improvement. That one little thing helped her so much mentally. After that, she knew she could get her normal life back. God knew she needed that “little” step to help her along in her journey.

It seems like each month has brought some new improvements. These improvements have also brought some challenges, but nothing that she wasn’t up to working on. She has been such a fighter through all this.

Her next big improvement came right after Thanksgiving. On Thanksgiving, we always go to my Aunt’s farm for dinner. All the kids (and whichever adults) go to the barn to ride horses. We always have so much fun. The kids rode for hours. I had to almost literally pry them off those horses to go home. We had physical therapy the Monday after Thanksgiving. I thought her physical therapist was going to fall off his chair when he saw what she could do that day. He told us to keep her on those horses! No problems from me on that!

Shortly before Christmas, she made another huge improvement. By this time, she had almost all of her range of motion back. It was good enough that we put her back into her jiu-jitsu classes the first week of January. All the kids were so happy to see her back in a uniform. They all gave her hugs or huge smiles or some way of showing their excitement and enthusiasm. And, I must say, every single one of those kids in her classes have been so wonderful about helping with her recovery. Not one of them has been doing anything to make her feel bad about her arm and it not working properly. They have been model citizens, and I’m forever thankful for that.

Once she started jiu-jitsu again, things took off from there. Her motion has been amazing. Her strength isn’t quite all back yet, but good grief! She has gained so much strength since she got back! She can put plates into the cupboard (one at a time) without even quivering. She hasn’t done that in almost five months!

About a week ago, we had our typical physical therapy appointment. Laiyla and the physical therapist were having planking challenges to see who could hold it the longest. They were doing side planks so Laiyla could work on her weak arm. Laiyla actually held it longer than the physical therapist did! Her therapist was so pleased with how much progress she had made, that she moved Laiyla from twice weekly appointments to once per month!! I can’t even explain to you the joy that Laiyla had on her face when she heard that! It made this mama’s heart happy!

The only thing Laiyla had to promise to do was keep up with her exercises and try to do her cartwheels again. She said she would do that. So, this past Saturday, I brought the kids to their jiu-jitsu classes. I told Laiyla she should try her cartwheels. She said she didn’t want to try. I told her she needed to try. We went back and forth about it for a little while. I finally talked her into trying it by telling her that she had a foam floor underneath her if she fell. She did her cartwheel on the first attempt. She never even waivered. And came up with a massive grin on her face! My heart jumped with joy!! I can’t imagine how good that must have felt for her! I still can’t get over it. She kept turning cartwheels until class started. She was super excited to show her coach and professor. And they were super excited to see her do them again!

Saturday was also the day that she was able to start live fighting again. She was so nervous. She was a little beside herself when she realized that the drilling portion of class was over and it was time to do the actual training. Thankfully, it was a small class that day and she was able to work with some of the other girls. The coach put everyone in groups of three that day and had them rotate through the order. I think that was the perfect way for Laiyla to get back into rolling. She was able to take it a little bit easy and was able to sit one round after rolling two rounds. She couldn’t stop smiling after she rolled her first round. It just so happened that she rolled her first round with her little sister and was able to kick her butt a little bit. I’m sure that didn’t help boost her morale at all… LOL! Those two have a serious rivalry on the jiu-jitsu mats!

I can’t tell you how everyone felt after that class. There are no words to describe it. It seems like every little thing is such a huge milestone for her and for all of us as a family. We love watching her re-learn all her skills, and to watch her reaction to being able to do something again. It’s been like a continual Christmas around here ever since September! And we all love it!

The one thing that I want everyone to take from this post is that nothing is ever final. The doctors told us she would never get her motion and strength back. And it was with good reason that they told us that, but it was far from what God had in store for her. God is bigger than any doctor. God has way better plans for our lives than anyone else can even think of for us. I’m so thankful God is bigger than everything. He’s bigger than AFM. He is healing my daughter, and I can’t be anything but thankful, grateful, and blessed. God is good ALL the time.

I’ve attached a video of Laiyla doing her first cartwheel since onset. Look at the massive grin on her face when she gets done!