The last time I posted was February of 2020. Boy has a lot happened and there is no way I have enough time to list everything that has happened in 4 years. So long story short!
2020 - We stayed home mostly. We were trying to get Hailey's seizures under control and help her regain and maintain her abilities. We still drove to Salt Lake for all her appointments and Hailey got a new wheelchair. It's pink of course!
2021 - Hailey went back to school in person but was spending more time in her wheelchair and not being able to ambulate. Hailey was getting ready to move onto high school and we received our placement. Hailey's school would be about a 20 minute drive away from our home and that wasn't sitting well with me. I decided to use my college education and become more involved in the school district. Hailey's health was declining.
2022 - Hailey would be starting High School and I would be starting my new position as a para professional for the special education department at a near by High School. Hailey's school did not approve of me being too close by. They saw me as a parent first and when I voiced concern for where I saw that there was a lack they slowly started to restrict me from being at the school.
I loved the school I worked at and I became familiar with the administration and the teachers. They saw how hard I worked but also saw that Hailey was my priority so I wasn't able to always be at work. When Hailey's not at school I can not work. They asked me over and over how I could get Hailey over to be at this school and I guess the Universe heard and went to work.
2023 - Again a huge decline in Hailey's health. She was full time in diapers, and completely non ambulatory. She was a floppy bunny that provided no assistance when moving her. We had a 2 story house that was no use for us. Hailey was 14 almost 15 and we had to carry her up the stairs. We're no spring chickens so it was taking a toll on us. We also do not have a wheelchair accessible vehicle and taking her places is quite the feat.
We knew we had to move to a one story house and we had to move quickly. Interest rates were crazy and school would be starting again soon and Hailey would be starting her sophomore year. After searching for Houses that would provide Hailey's needs we finally found one. So we had to move. That was an adventure! The house we found needed WORK and the work had to be done before we moved in. I wanted ZERO carpet in the house for Hailey's wheelchair so her dad and I laid the flooring board by board! Another very long story short after being taken advantage of and being bamboozled and being stolen from we were finally able to move in. The house is great for Hailey! We even redesigned her bathroom to be wheelchair accessible. Which even though we weren't planning on that because we weren't in a great financial situation we knew it was something that HAD to be done.
Hailey started experiencing hemiplegic migraines which were very similar to seizures and she would lose function or be "temporarily paralyzed" We were thankful that our team of doctors helped us put together a protocol so we could handle these at home. We had had numerous hospital stays along with our SECOND flight for life to Salt Lake. (spoiler alert the experience was just as terrifying as the first time IYKYK)
I decided to continue to work hard toward moving up with the school district. Hailey would finally be going to the same school I was working at and she has her own 1:1 aide that helps her daily. The teacher was amazing, but everyone was overwhelmed to know that there was a medically fragile terminally ill student at the school. The nurse and I met regularly and I was able to be near by to help when needed. Towards the end of the year we discovered that Hailey was in critical heart failure. She has pacemaker induced cardiomyopathy. She would need surgery for a new pacemaker. This would be her second one. We would be spending Christmas in the Hospital in Salt Lake City.
2024 - Hailey had her surgery and spent a few months recovering at home. During her 8 week post op check up we caught the dreaded virus for the second time and that took us even longer to recover but Hailey had regressed a lot. She also had her second Grand Mal seizure. It had been 4 years since her first one and again regressed. Her current wheelchair is not what she needs so we are in the process of getting an anti gravity or tilt in space. I have increased all her therapies which prohibits us from attending school 5 days a week. I had tried to get Hailey all the things insurance has denied so everyday is a fight.
I've upgraded my credentials so that I can substitute teach while Hailey is at school. Hailey will be entering her Junior year, we will still have appointments in Salt Lake and we will still fight for everything that she needs.
So that's just the short condensed version of four years. I've neglected this blog and my thoughts but I found new outlets. I sew, Hailey and I craft. I have co-workers that are friends that I am able to talk with and spend time with who also care about Hailey. So for now we are still around we just don't post as much.
