**Trigger warning for this post, there is talk of miscarriage.
In June 2016 Sydney was not quite two years old yet, and Mason had just turned 4. Sydney had chronic ear infections, and she would not sleep. She had night terrors, and she would be awake all night long. It was brutal. She finally had tubes put in her ears, and things calmed down. Shortly thereafter, Mason started limping.
Now he had done this many times and it always went away. He would limp for a few hours, say his foot would hurt a little, or his hip would hurt. We discussed it with his doctors, but they said he was just always spraining his ankles, or twisting his hips funny. Mason’s feet turned very far in, and so we always took what they said, and believed it. We did question it, but we were not the doctors. Then, the limping didn’t go away, and one morning he wouldn’t even get out of his bed. We finally decided to go have x-rays done. That’s when we ended up at Akron Childrens orthopedics. He was casted because they thought he possibly fractured his growth plate.
By July, One week into this new cast, and I called and requested it come off. He looked as if he was going to break his leg above the cast because his legs were so weak, and his joints so flexible. They had us come in and evaluated him. They decided to take off the cast, and put him in a walking boot. Also having us schedule him with Dr. Kerwyn Jones. He would help us figure out what was going on. His feet turning in was a big concern for them. The day came with Dr. Jones, and I had myself hyped up that he would say there was no need for concern, because there just couldn’t be anything going on. He was perfectly fine.
He watched Mason walk up and down the halls, checked his feet, his knees and every other major joint. He asked a bunch of questions, double checked Mason did not have any type of muscular dystrophy. I knew at this point, it wasn’t nothing. Then he said, he truly felt that Mason needed surgery. We could go the route of 6 weeks of physical therapy, but while he felt therapy was a wonderful tool to use, that it wasn’t going to change Masons feet enough. He explained that the surgery would be on both feet, and they would go in at his ankles, cut his bones, and turn his feet. Then they would use plates and screws to hold them all together. He would need to be in the hospital overnight at least 1-2 nights. No walking for four weeks, and then walking boots for 4.
He gave us time to go home and discuss what we wanted to do. We talked and cried and debated whether or not we thought he could handle it. We didn’t know what to expect, but we knew that this was the right choice. We knew he needed this. We planned, got as many things as we could to occupy him while he was bed, couch and wheelchair bound for four weeks. Lots of ipad time, legos, coloring and paw patrol toys. Then surgery day came in August. It was a long couple hours, the longest of our lives. He came out of it great, he was smiling, and happy to see us. He had a nerve block, and quite a bit of pain medicine. The first night in the hospital was ok, he did good. He watched a lot of movies, played a lot of Ipad games, and didn’t sleep. Then he started screaming, his feet hurt, they were swelling up in his casts, and they had to come and cut the sides of them more, to relieve the swelling. It was horrific. We knew it needed done, but we all cried, even his nurse. After that, he slept, for a while, and he had the shakes, and he couldn’t stop twitching. Watching your tiny little four year old like this is just heart wrenching.
After three days, we were able to go home. He was thrilled to get to go, but being at home, was way more challenging than we had anticipated. Figuring out how to get him to the bathroom, or teaching him to go in a portable urinal, all things that were difficult to say the least. We also had our two year old Sydney, who wanted to play with Mason, and would forget that she had to be careful. Mason was on pain medicine, he was in pain and so tired. Therefore he was incredibly cranky haha. He did really enjoy all the extra screen time he got though, and the gifts people dropped off!
We were able to get Mason into his preschool in September, and they were amazing. They helped with his wheelchair, they helped him be able to go to school and have fun. I’m truly thankful his preschool helped us so much.
Shortly after we got home from the hospital, I found out I was pregnant. Major surprise. Then we found out we were having twins.. and we were shocked, but it didn’t appear that the babies were growing like they should. We knew that a miscarriage was probably going to happen. We waited, I was 10 weeks along, and it happened in the middle of the night in october. We were obviously devastated. I struggled with what was happening in our lives. Between Mason, and the loss.. I wasn’t sure I could handle much more.
Two days later, Mason had a school field trip, and thankfully Bryan was going to take him. I had a lot of pains that morning, and I wasn’t sure what was happening. I assured him I was ok, and to leave Sydney with me. Take Mason and focus on helping him have fun and the wheelchair! About 45 minutes after he left, I knew I needed to go to the hospital. I had a friend come pick Sydney and I up, drop me at the door of the hospital, and take Sydney. I assured Bryan I was ok, focus on the field trip, Mason did not need any worries. I ended up needing a procedure to clear out the rest of the miscarriage, because not everything passed. Bryan met me up there when he was done, and we cried more. I got to go home, and rest. A few days later, I needed another procedure because I had precancerous cells on my cervix that needed removed. I felt like my body, and my heart had been through hell.
During all of this, Mason had appointments for follow ups from surgery, he still didn’t want to walk, couldn’t walk, or struggled a lot to walk. He would have days he was in so much pain, he would cry, and have a low grade fever. He had physical and occupational therapy two times a week, where they were helping him learn to walk again. How to better manage his hyermobility. His doctors, and therapists all knew something else was going on. No one knew what it was though. It wasn’t clear cut, nothing stood out as to what could be causing what was going on.
During this time also, Sydney needed her tonsils and adenoids out. She was just barely two and at this point we knew we had no choice. Her tonsils were covering her throat. The night we came home from her surgery, Mason had a high fever, with redness and swelling in his legs where his incisions were. I packed up and had to take him right back to where we just left with Sydney. He was admitted and they did lots of tests. He had an infection, thankfully not in his bones. High doses of antibiotics, and then we got to go home the next day. Sydney handled her surgery like the strong willed little girl that she is. She is spirited, and she would only eat popsicles! lol
At this point it’s now november, we felt like we had been through so much, our heads were spinning and we couldn’t make sense of any of it. We got into genetics at this point. Mason had testing done, we also had to have the testing done. It was going to be a long process. We had the testing done, and we waited. Mason was starting to walk better, and was playing more, and doing more things that he had done prior to surgery. We were hopeful, genetics would come back and it would be nothing. It was just that surgery took a lot out of him.
By december, we had not heard much from genetics. Sydney was struggling to gain back weight, she woke up one morning, and couldn’t stay awake. She would cry her stomach hurt. After half of the day being this way, I took her to the ER. They admitted her. No real answers came from that, other than she had some damage from being on so many antibiotics for so long. Even her teeth were showing signs of decay. After 24 hours of being observed, Sydney felt better. We got home just in time to settle in because it was almost Christmas.
We felt like we had no idea how we made it through those six months still partially sane. We enjoyed Christmas with our families, and hoped 2017 was better!
I found out right before valentines day I was pregnant with Maddox, and we were so thrilled, but so scared. Then shortly into March, we found out Mason had Ehlers Danlos Syndrome. We had no idea what that was, nor did we know how to say it! We dove in headfirst into anything we could find about EDS. It made us more scared. There is no real literature that says what to expect, it says what CAN happen, what MAY happen, but not what WILL happen. So we waited, unsure of what would be next for him.
Now, its 2020, and We still don’t know what to expect. We are ready, and we are better prepared for what may happen. We have an amazing doctor for him, and his team at school is better than we could have ever imagined.
We have held onto what this year was for us, and we don’t talk about it much, not even between the two of us. We try to forget how rough, and devastating that whole 6 months was. Maybe that is why I wrote about it today. We have opened up, and shared with so many people, and answered a lot of questions about how we found out. This time has been so far into the front of my mind, that I needed to get it out. Document it, something.
As always, until next time