Annie: The Play

I took Mckay and Brooklyn to see Annie: The Play through a Hope kids event. It was nice to get out and enjoy each others compnay. We ended up leaving early due to having to be somewhere and I was not realizing how long the play would last.
Thanks Hope kids for setting this up so we could get out and have fun.

Self Care, Crying, And Goals...

I found a few gray hairs on my head and my eyebrows and decided to go all brown. I know I am getting old and I am supposed to age. I know the process is going to happen whether I like it or not. I do not feel I am ready to have gray hairs on my head, at the age of 36. I am totally going to have loads of fun with my hair as I age, because I am only going to be aging once. P.s. I love my dark hair!

Since September 2018, Levi's medical condition and delays have increased tremendously. We have been so busy with making appointments, attending all the appointments related to doctors, school and our advocate. We are doing all this on top of our normal work load. Stress has been to the MAX and we are getting about 3-5 hours of sleep each night. It is totally and completely exhausting. We do not feel like we can ever catch up. The best words I can describe my feelings is "I feel like I am drowning". As you can see Levi was taking pictures of me sleeping while watching his show. Levi doesn't actually fall asleep when we'd like him to and wakes up really early. We know that's not enough sleep for him or us, however there is nothing we can do to change it.

With Levi's delays, he doesn't understand the time of day and how much sleep he needs. He doesn't nap anymore and won't go back to bed like any of my other kids. When he is up, he is up. Due to his seizures and delays, that means one of us has to be up with him regardless if we want to be up or not. Someone needs to help him as he needs help in eating, getting dressed, seizure safety. Levi doesn't sleep in and he sticks to a schedule everyday. Every Mom knows that you aren't really asleep when you have a child next to you, it's just a quick shut eye.

 (Pretty sure it was around 6am on a Saturday Morning)

Talking about Self care, being a care giver for your own child and not having help from the state means you NEVER get a break. Some days are easier then others, but you hardly have a chance to yourself. You can't nap whenever you want or shower whenever you want, or alone. When you run errands, 95% of the time, you have a buddy to tag along with. This isn't usually easy and takes motivation to getting Levi out the door.

When we have been devoting 100% of our time to Levi and his medical needs, our children and our normal routine and task load, we do not spend time on ourselves. There are lots of days I seem to look like I have myself pulled together. There are lots of days when I do not and I look like a hot mess. On this particular day, I remember it well. I was struggling with being a hands on Mom to everyone! I was struggling to getting our house in order, staying on top of my daily responsibilities and To- Do List.  I was letting my OCD over ride my life. I had to learn to be nice to myself and let things go! This is SO hard for me to do.  I was really frustrated with what life had given me.  I broke free (which just means I left the house by myself) and hit up Soda Rush (a cookie & soda shop by my house) and blasted my favorite music ever and just ran errands and cried. I cried a lot!

But then I pulled myself together again and decided to try again, because the other option is giving up and that is not a choice. I decided to make some goals for myself and be realistic about them. I was in constant turmoil as I was trying to fix things and things weren't going according to MY plan. You see I am stubborn and I am fixer and solver. I am a big believer in not "pushing things under the rug". If there is a problem, let's solve it.

We were getting ready for our BIG IEP meeting at the school for Levi. At these meetings, I have the big dogs in my meetings and there are a lot of people. We have our advocate with us, the CEO of Academics, the SpEd department, Principal, Assistant Principal, Therapists, Nurse, District Nurse, School Psychologist, and you get the idea. During this meeting, we go over goals, services, and an overview of minutes and what to expect for Levi everyday.

A couple days before this meeting, I had a dream,  I remember talking with an old man who was kind and gentle. He was referring back to a scripture and said " It's just like in 1 Nephi 18:21"...then I woke up. I immediately read the scripture. It reads:  "And it came to pass after they had loosed me, behold, I took the compass, and it did work whither I desired it. And it came to pass that I prayed unto the Lord; and after I had prayed the winds did cease, and the storm did cease, and there was a great calm."

It is about being calm and having peace, trusting in the Lord. Knowing that it will work out. I felt like it couldn't have come in a better time. I definitely have not had my full trust in the Lord, being frustrated that things weren't going the way I had expected. Trying to fix everything so it will all work out.  I was calm and slept well that night. I was calm going into the meeting with Aaron and our advocate. We were prepared and we were ready.

My goals for myself is to workout at least 5 days a week. I do this for myself. I am a much happier and relaxed person when I work out. I have gain what I like to call "Stress Weight" and it is not fun! It is so hard to loose and dedicate time for me BUT it is SO so worth it! I also am praying and relying more on the lord. I need more peace in my life and house. I have constant examples who help me redirect and help me to focus on what's more important. I have also decided to not be so strict and be more fun. I get stressed really easy and I miss being adventurous and having lots of energy and fun. I am certainly not perfect, but I have accepted my life and my trials. I am trying to be the best me so I can be the best for my family.

https://i.postimg.cc/nhbmFRSd/20181111-200027.jpg

VNS Surgery & Recovery

(Levi is in recovery room, post surgery. That teddy bear is like "Buddy" in this story. The teddy bear has a pocket inside his shirt so there  device can be in the same place as Levi. Levi is the only person we know that has the VNS device. It was important that he had a friend that was just like him. )

When Levi’s seizures got worse and he started complaining of headaches, we knew we needed to do something more. Levi has failed 4 medications and all the medications did not stop his seizures. The medications did stop his motor skills, cognitive ability and communication skills. We lost our communicative little boy when he was on medication.  The neurologist gave us options because Levi was in pain and his seizures were changing and increasing. We looked into the VNS surgery and did a lot of research for weeks. We prayed, fasted and prayed some more about the device. We were told nothing but good results from the device. We read all the side effects and still felt good about this path. We had a 50% chance that it would work and from talking with everyone, it was either going to help or not harm him. Levi had the surgery on Dec. 17, 2018. Levi did well during surgery and he did well post surgery recovering at home.

(Levi is in a sling as the device and wires heal, his arm was to be "resting". Later we found out that was not needed and they don't normally use a sling after this type of surgery).

We were instructed to use the magnet when we saw Levi in a seizure. We were already seeing good results with having the device in, in a short period of time. Levi was sleeping better and waking up happy (something he literally never did for years). The device was pulling Levi out of his epilepsy spasms and twitches. Levi refers to the device as “Buddy” and knew he was helping Levi with his seizures. One day, right before Christmas, I was wrapping presents in my room and Levi was having a hard seizure and the magnet was not pulling him out of the seizure, Levi then threw up and was lethargic. Levi started have different seizures and they were scarier. After a couple of days of his seizures increasing and Levi vomiting. He started acting different again. His scary and hard seizures we changing from bearing down to eyes rolling behind his head, lethargic, chewing, limbs going limp and then passing out and sleeping for 2+ hours. Sometimes he would groan through the seizure and sometimes he would vomit. We had to prepare rescue meds a couple of times because his seizure was hard and long. There was a time when he started shaking and his limbs were stiff straight. There was another time when Levi had a seizure and fell off the computer bench and landed on his head on the tile, then passed out. I am telling you, these were SCARY!

Aaron called the VNS company and explained what was happening and their response was it was not normal and not heard of, we needed to call our neurologist. Aaron called the neurologist and then we had a follow up appointment and Levi had one of those hard and scary seizures. We were told it was a myoclonic seizure. We were instructed to not use the magnet anymore and see how that works. We did just that, but then Levi passed out at school and almost passed out on the playground. Thankfully we have the paraprofessional in place so she was there along with his kindergarten teacher to help catch him so he didn't fall off the playground set. Once, he had to get wheeled out to the nurses office because he was so lethargic from having those hard and scary seizures. We then ended up turning off “Buddy” and have still seen those hard and scary seizures, sometimes, just not as often. Levi doesn’t talk about “Buddy” anymore, except when we ask him if "Buddy" hurts. Our neurologist explained that this side effect of the VNS device that Levi has been experiencing has NEVER been heard of. There is no medical documentation of this EVER happening. Levi is literally one in a million. He also has no explanation of why this happened. He suggested that we move onto another option and try to continue to help Levi and try to get the seizures under control so he can stop being in pain, recover and be an active little boy again. 

I was so frustrated and mad that we went down this path, why we felt good about going down this path and what was I supposed to learn from it. I couldn’t understand why we were led down this horrible path. I was talking with a friend about this, who has a daughter with special needs, and she said “You wouldn’t know if this was the best option unless you tried it. You would always be wondering if it would have helped if you never tried it”.  I was expressing my frustration to a close friend about this and she told me of an LDS talk that was a similar situation of mine. The story was the Dad and son were out shooting guns in the desert, once the sun went down they started heading home and couldn’t remember which path to go down as they reached a fork in the road. They both prayed and felt strongly to go down the path on the right. As they drove about 400 feet, the road stopped and they had to turn around and knew the other path was the correct path. The son had asked his Dad why they felt good about going down the wrong path. His Dad replied they wouldn’t have known that this was the correct path if they hadn’t went down the wrong path to begin with.

 After hearing about this story and talking with my friends, I now feel like I finally understand why we felt strongly to get the VNS device. This wasn’t the correct path for Levi, he did not have a good results from it. After going down this horrible path, we were led to trying out new medication and hopefully getting better answers, better results and more help for our Levi. We also MIGHT try the VNS device one more time. The reason why is, there is no one else who has ever had this side effect, if Levi has the same reaction again as he did the first time, he will be put in a medical journal. He will be able to help other children and adults that go down this path too. It will be listed as one of the side effects. He will be able to help others. Right now, Aaron and I are not emotionally ready to try this again. We will have the VNS device removed later this year, if it continues to cause problems and not help Levi.  More on that later, as we progress down that road. 

For now, please pray for us and Levi. Having been down this road gives me a new perspective on judging others. I had no idea how hard it was to have a special needs child and a child with so many medical conditions. I had no idea how difficult it was on the individual and the parents. We never get a break and Levi has to constantly be watched 100% of the time.  I didn't realize that having one child with this complex medical conditions would make such an impact to the rest of the family. Our children currently don't have enough Mom and Dad time. Our time is so consumed with Levi, we don't have enough hours or energy in the day to spend with our other four children. I miss being able to be crafty, creative and working on fun projects. I miss being able to binge watch TV shows and having a clean house most of the time. I miss being able to sleep 6+ hours each night. I miss being able to take a nap when I want and being more relaxed and at one time, I recall I felt bored a few months ago. We just need prayers, love and compassion. This is HARD and we are doing the best we can.

Brooklyn's Winter Performance

Brooklyn is in Social Dance at school, as part of her P.E. credit. She tried out for the winter performance and made it. She had devoted a lot of her time for practice after school, during class and at home. She enjoyed every minute of being on stage and performing. We are so proud of her hard work and desire to try out.

(Brooklyn & her best friend CeCe)