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)

One on One Date with Mom

I took the kids that wanted to go with me to look at the store of some toys they were interested in. We do no have cable TV, so they do not see any commericals. I took pictures of the items they said they wanted. We talked about the items they wanted and hoped for.  I loved seeing the joy on their faces.  Afterwards, we went to my favorite frozen yogurt shop called Yogurt Kingdom. I enjoyed spending time with them and getting a good idea of what they wanted for Christmas.  When it comes to dessert, my kids tummies are always hungry and they struggle with a good serving size. Thank you Yogurt Kingdom, It was delicious! 💗

Coyotes Game with Hopekids

We attended the Coyotes Game through Hopekids. It was so nice to be in a suite. With Levi having special needs, not understanding his boundaries and not being able to sit still, sitting in a stadium seat is unbearable. We were fortunate enough to be in a suite, plenty of leg room and the choice to be able to move whenever we want is another plus. We came and thought we were prepped and going to have a good time. As the game started, I looked over to check on Levi and this is what he was doing.  I did not know that every time a goal is made, the lights flash and the stadium rings a bell. Flashing lights and loud sounds trigger seizures, so I had to cover his eyes every time. 

My son was overstimulated, cold, and couldn't handle the noise. He was using his brothers' jacket to muffle the noise over his hooded jacket. He was curled up and starting to shut down. When I took him to the bathroom with me, for a movement break, he was sitting in the corner of the bathroom stall in a fetal position, covering his ears and whining. I called Aaron, explained what was happening. I couldn't believe how sad this was to him. I have never been to the coyotes game, so I didn't know what to expect. I wasn't prepared. I felt awful. Aaron went to one of the security guards explaining he needed ear buds to cancel out the noise for our special needs boy. Those foam ear buds did the trick. He was back to himself, eating snacks provided in the suite and watching Jack Frost on the TV. 

Our niece Ashlynn came because Brayden was not feeling good and we needed to fill that ticket spot. We are so lucky she came. She and Brooklyn enjoyed each others company and were fun to watch as they tried to get on the Jumbo-tron.

Thanks Hopekids for giving us this opportunity to go. We appreciate it.

Donated Bikes for Hope Kid and Siblings

Andreas' Closet partnered with The Lost Dutchman Motorcyclist Club who donated hundreds of bikes and toys for the Christmas Angels Trees in Walmart and Hopekids. My kids were able to come, pick out a bike & helmet of their choice,  and walk out without having to pay anything as it was a donation.  Here is the story from 3TV.  If I knew they were going to take pictures and that I would be on Tv, I would have actually got dressed and brushed my hair.  😂

 https://www.azfamily.com/news/lost-dutchman-motorcycle-club-buys-gifts-for-hundreds-of-christmas/article_19eab98c-fc33-11e8-8f68-8b7eb15de474.html

Thank you Grandpa Richins for letting us use your truck so we could transport the bikes home.

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Movie Under the Stars

Through Hopekids we were able to attend a Movie Under the Stars and watch Incredibles 2 outdoors. It was a movie I couldn't bring Levi to, as it has several scenes with flashing lights that will trigger seizures. We were fed cotton candy, popcorn, pizza, fruit snacks, soda & water. Then given glow sticks and light up fidget spinners.

We brought our own chairs and blankets. It was actually really cold and I am so glad I dressed warm. I am glad that my teenagers came and enjoyed the fun movie and food. I am glad that we have the opportunity from Hopekids to enjoy fun events that we can bond and make memories as a family.

Merry Christmas

I cannot believe I didn't take as many pictures as I wanted of visiting family on both sides of the family. We had a great Christmas Break and a great Christmas.  On Christmas Sunday, all my boys wore sweaters and were dressed handsome, I wish I got a picture of that. Our Outfits all matched. Mckay and I wore a Navy Blue Gingham top. Brooklyn and I wore cheetah print. And the boys wore either black or grey sweaters.  

Brooklyn's Christmas Sunday outfit. We were late to church. I wanted to snap a picture for my Mom as her dress was part of her gift.

We went to my parents house for dinner and made Gingerbread houses for dessert. It was fun and even the teenagers got involved in building their houses. Some of the adults were involved helping those that needed help.  I knew that this would be just so fun for the kids to enjoy and eat as they entertained themselves. 

Mckay has a crown of leaves on his head, like Ceasar. He looked so cute.  Brooklyn struggled with her house, she flipped her plate upside down thinking that would help balance her house out.  She ended up requiring help from Uncle Jesse. 

Mckay's Gingerbread House. I cannot believe I didn't get everyone else's. Levi's house was built for a second before he started eating it.  :)

Charlie & Brayden building their two story mansion. It held well and they both spent so much time on it. I am proud they spent so much time on it. 

On Christmas Day, these are the only pictures I actually took. Our Tree and Levi watching his new Paw Patrol Movie he received in his stocking from Santa. He was so happy.

🎄I was in heaven, because I was catching up on some much needed sleep. 

Hopekids Pizza & Cake

We attended a Pizza and Cake event with Hopekids. We never really know what to expect at each event, whether it be school, church or family event with Levi. We are so glad we went. It was a great opportunity for us to bond with Levi and Mckay one on one. Since Levi requires so much attention, my other kids have been receiving less attention and they are struggling.  The pizza was delicious and we each made our own.  The kids also decorated their own cupcakes and ate them. 

Since being on their journey with Levi having Epilepsy and Special Needs, how his Epilepsy isn't going away or getting better we have been struggling. For me, I have been so isolated and not having another person to turn to that has already been down this road. Levi wanted to go outside and run around. Aaron was outside and talking with other Moms' about how Levi is getting ready for the VNS (Vagus Nerve Stimulator) surgery and how we have been so worried. This Mom he was talking to, said she had a niece who had it. She said how she saw a difference in her seizures and her life. We have NEVER had anyone to turn to for something like this. This was a glimmer of hope that I was leading in the right direction. This road has been so hard already, but I am starting to see small glimmer of hopes that I am going down the correct path. 

Aaron and I both felt grateful that we were able to meet someone who had a good experience with the VNS surgery. We had hope that Levi would do okay and this surgery would help him, possibly reduce his seizures and pain that he is constantly in.

Mckay had a smile on his face the whole time. I helped him roll out his pizza dough. I helped him with his toppings. He made friends at our table and made more friends when we were outside running around with other Hopekids. We were accepted and loved, no matter our circumstances.  It was a nice time together and we are super grateful for that bonding moment to make memories together.

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Sibling Love

On Veterans day, we went to the zoo. It was packed with so many veterans and kids and it was fun. I had my whole family there and loved it. At the end of our trip, we were walking out but saw these beautiful pelicans. Mckay and Levi's relationship has grown tremendously and still needs improvement, who doesn't need improvement? Levi now hugs and kisses Mckay when he is happy and wants to share that love and happiness with him. It is so cute to watch and know that they are building their relationship.

Mckay and Levi LOVE to sleep in Brooklyns' room. Our rule is only on weekends, this is allowed because they play and don't get as much sleep as they would sleeping in their own beds. This paticular night, Aaron and I were on a date. Brooklyn called us in a panic that Levi had a seizure in his sleep. He woke up, said he had a seizure and whined. Brooklyn prayed to Heavenly Father to ask Levi to stop having a seizure. Levi did stop and then said he wanted to go back to bed.  I am forever grateful that Brooklyn was there to help when I could not. It was a bonding moment in her life and I have seen Brooklyn change for the better. 

I wanted to share the love my children have towards their brother Levi. Levi is very hard at a lot of times, and even when we struggle and have a rough day, at the end of the day, we still love and appreciate Levi. I know I do not give my children enough credit of how much I appreciate them. I try to improve where I am struggling. Brooklyn, my daughter has told me lately how she wants to work at Hopekids Foundation and wants to have a special needs child, preferrably a Down Syndrome Child. I have never heard of any teenager plan to have or want a special needs child for their life. I KNOW that she is learning to love everyone from all backgrounds and all needs in life. I KNOW that she is paying attention and trying to be close to Heavenly Father. She is an example to me. She teaches me new things every day. 

On this particular day, I took Tanner, Mckay and Levi to a Hopekids event at Sea life Aquarium and LegoLand Discovery Center in Tempe. The boys were counting down the days and was so excited. It was also a stressful day. After a long full day at school, Levi is tired and overwhelmed. He usually has between 5-7 seizures at school, not including what he has at home. Overstimulating him causes more seizures, which makes it challenging at these fun events. With Levi's special needs, he doesn't pick up on social cues and boundaries. This is another challenge that we have to maneuver through, daily. The boys are learning to communicate and bond with Levi. It is so nice to see them work together and get along. 

I just wanted to remember the growth of my children bonding and building their relationship with Levi. Not everyday is stressful, we have many good days, but they all take a lot of work. We are forever grateful for having Hopekids in our life. It makes us bond and look forward to really cool events. 

Trip to the Childrens' Museum in Phoenix, Az.

We got accepted into The Hopekids Foundation this year. Hopekids Foundation is for children who have life threatening diagnosis. The Foundation treats our Hopekid and family so well. They invite and strongly suggest for siblings and parents to come to the events they put on, even if Hopekid cannot come. They know how isolating it is for families who have to deal with so much medical appointments, therapies, surgeries and stress. They want us to bond as a family. 

We are so blessed to be apart of this foundation!

Everyone came but Brayden. He had a soccer game to go to. We missed him.

With a large family who is all into extra curricular activities, we don't always get to go to events together all the time, but we try.

This place was really fun. It was a first for us. I was able to let my older children explore on their own. I was able to bring in food and eat in the cafeteria. Note to self: bring an actual lunch and keep in portable cooler, not just snacks. This whole museum was very kid friendly and so fun, even for us adults. 

Thank you Hopekids! We had a blast and made so many positive memories with our family.










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How To Manage Stress

Being an advocate and caregiver for my Levi is so much work, at a lot of times it is pure exhaustion! I deeply love being a Mother to each of my children. I am SO very grateful for the opportunity for me to be a Stay at Home Mom. I am busy with my own dreams and goals, as well as running the household. I am slammed when the kids arrive home from school. It is so important to me and Aaron that I have enough time to manage my stress. Raising as many kids as I have AND having a child with Special Needs, adds A LOT of stress to my life. I have created a list that works wonders for me.

This will make you smile.  :)

(Levi is eating his favorite snack- Raw Broccoli)

How To Manage Stress

• Exercise 

Exercise takes energy that is hard to get when you are drained. I add a little pre-workout caffeine to my body daily routine and I am able to get to the gym. I actually enjoy walking on the treadmill and lifting weights. I feel like a warrior once I complete my workout. I am always less stressed and if I had a headache, it is always gone. I am in a better mood and depression subsides when I workout. I strive to workout daily.  

• Deep Breaths

You can do deep breaths anywhere and it works! I have to breathe deep when someone cuts me off the road. I have to take deep breaths when I need to "bite my lip". It helps me process my emotions and thoughts more clearer. You cannot take back when you didn't mean to say, even if you are truly sorry.  Breathing Deeply helps improve digestion, De-stress and feel energized. These factors go on high alert when you are stressed. 

• Hot Baths/Showers

I LOVE taking hot baths and showers, although I prefer baths over showers. I always feel so relaxed and calm after I soak in the bath for at least 20 minutes. In my opinion, you have to set the mood just right so you will enjoy it too. I use Epsom Salt with Lavendar oil and turn the lights off. I fill the bath water as high as I can and have the temperature as hot as I can stand it and be comfortable. I sometimes listen to soothing music or a podcast I enjoy. I sometimes will read through a magazine or a book. You can light a good smelling candle. You can also add essential oils and bubbles.

• Sleep

I cannot stress this enough! Nap whenever you can. If you are like me, you will see me staying up late trying to catch up on my daily assignments I couldn't get through and tidying up the house before bed. I am a night owl, but I do take naps whenever I can.  It's almost like having a newborn...sleep when kids sleep. But for reals!

• Pray

I believe in God. I believe in the power of Prayer. I believe that Heavenly Father listens to me whether I am happy or sad. I believe he answers my prayers. I pray often. I usually am always praying for strength, safety and help. I do also pray in gratitude to my Heavenly Father for appreciation for staying at home with my children, being a mother and for the many blessings I have.

• Journal

I choose to journal my thoughts on this blog. It is very therapeutic to me. I also sometimes journal my inner most feelings that I don't share with anyone in a hardbound book I keep in my nightstand. Mostly, it is just a diary of my day as well as questions I am searching for myself and writing out to Heavenly Father. 

• Read

I am a big book reader, when I get a good book I am into. I love Non-fiction books, Mysteries, Trauma & Survival. I am learning to love the Book of Mormon. I listen to my personal scripture study online through my phone while I am multi-tasking at home. I comprehend the scriptures better. Regardless of you choice of book, it is nice to sit and read, feel calm and relaxed.