#LifeWithJayen

I know I've used the hashtag before, but it couldn't fit any better. Life with Jayen is ALWAYS an adventure. It's always a roller coaster ride. Last night I put Jayen and Brilyn down for bed at my mom's house like I usually do. I tried laying Brilyn down first so she had a chance to fall asleep before Jayen came in. Usually if she is sleeping he does a better job leaving her alone. But last night he had a different idea. Jayen and Brilyn both kept getting out of bed multiple times. After my mom went down to tell them they couldn't get out for the 100th time, Brilyn came upstairs and confessed she ate some of Jayen's medicine. I ran down the steps as fast as I could to find Jayen's mouth covered in white powder an pills half chewed and capsules opened all over the bed. I picked up everything I could and tried to figure out when exactly they ate. After realizing I was missing over 30 pills I called the pharmacy to see if they had any suggestions. They were no help! I had to call poison control. Poison control was not happy and told me I needed to take them to the emergency room immediately. Grandma was in the shower but quickly finished so she could go with us. When I went back downstairs to get the kids Brilyn was sleeping but Jayen was still awake. I told him to go upstairs and get grandma. This is when it hit me, and him apparently, because he couldn't even walk up the steps. I was so worried at this point. Grandma asked how fast she should drive since it is normally a 30 minute drive to the closest emergency room. We swiftly made our way to Yankton, South Dakota and were taken into a room right away. No one seemed to worried about Brilyn, she must not have had as much as the drunken sailor next to her. He was a little worse for the wear. I was so surprised that they didn't give him IV fluids, didn't pump his stomach, and didn't give him charcoal. They simply monitored him! Brilyn was monitored for 4 hours then discharged at 130AM. Jayen was admitted for observation for the night.

 

 

After Brilyn was discharged we were taken upstairs to the pediatric floor. Jayen was still hyper and bouncing off the walls, but mommy was Black Friday shopping the night before and was running on only three hours of sleep in over 48 hours. I tried staying awake and keeping Jayen in bed for the night, but was struggling. At one point in time Jayen was out of bed and somehow knocked over an IV pole. I startled and quickly got him back in bed. We were the only patients on the floor but still no nurse came in to see what happened. I think he finally went to sleep, but so did I so I'm not sure. In the morning we called Jenny Kapla to tell her where we were and that we wouldn't be able to make it to see her today. She asked what we needed and was ready to come by and say hi. Jenny brought over the most amazing care package; A phone charger, toothbrush, toothpaste, make-up, a snack, shirt and even a brand new pair of underwear. She honestly thought of everything that only someone who has been there would think of. (She's going to kill me for this picture, but it was the only one I got!) I am so glad she is part of our lives. We are forever family and here for each other no matter what.

 

Tanya, Morgan and Brooklyn stopped as well. They brought more gifts. I don't like the idea of Jayen getting anything after what he just did. It was so nice to have them there. After a 15 hours of observation, the doctor finally agreed to let us go. I also asked that we got a morning dose of medicine before we left since we now had no pills until we got home. We left the hospital around 2PM. We picked up Brilyn and Dalan from grandma's house then headed home. What a long crazy weekend that just needed to end. The roller coaster ride had to come to a stop or I was going to puke. #LifeWithJayen is crazy, messy, chaotic, laughable, worth every second!

 

Happy Thanksgiving!

Happy Thanksgiving from my turkeys to yours! We are in Wynot at grandma and grandpa's house for the weekend. Our last Thanksgiving before moving to Arizona. Hope to make the best of it!

Jayen proved the vacation was over

First morning back with the kids and of course, Jayen had to smack mommy back to reality. We woke up this morning to have another seizure. So glad he didn't have any while I was gone, but really do we have to do it the second I return? AHHHHH. Back to life, back to reality!

Florida Vacation without the kids

Daddy has been gone for two months now and mommy needed a break. What originally started as a fun idea, turned into a five day vacation in Florida. Aunt Tanya was able to come up and watch the kids and be mommy for me. She took on every role; from school drop off and pick up to therapy sessions. There aren't a lot of people I could trust with Jayen for an extended period of time. I loved the chance to get away. I also loved hearing the "Jayen" screams as Tanya is franticly trying to take care of four kids running in different directions. Jayen is a handful and I can't just ask anyone to take care of him. I love the time they got together and I loved the time Matt and I got together.

 

I wanted to show the kids the picture of me flying over top of the clouds. They couldn't understand how I got there.

The stingray were so beautiful! I loved waking up in the mornings and watching them from the balcony.

And the sunsets made the evenings perfect!

The time with Matt was amazing and I was so sad to leave, but I knew Tanya had about as much as she could handle.

Christmas morning for Jayen?

What a change from yesterday. Jayen woke up this morning and screamed with excitement like it was Christmas morning. I laughed and then immediately started crying. This isn't something we will get to see or experience in Arizona. Jayen ran to his room, got his coat, gloves, hat, and boots and begged me to put them on him. Knowing we had to start getting ready for school, I let him go out for a few minutes. I haven't seen him smile like that in a long time. We love the snow and are not sure what we are going to do without it!

 

Support

I don't even know where to begin with this post. We are so blessed to have such amazing family and friends. The journey started as very isolating. Infantile Spasms is a rare, CATASTROPHIC diagnosis. I felt completely alone in a world surrounded by people. I read everything I could about my son's diagnosis. Mostly scary shit. I needed to know every possibility and every outcome. I needed to prepare for everything. We eventually made friends with others who have gone through this diagnosis and started teaching family and friends. We now have so much support and understanding of what it takes to raise Jayen. We recently handed out some Epilepsy Awareness gifts to those that work with Jayen. We printed these fact sheets and wrapped them around a bottle of purple fingernail polish.

I wasn't prepared for the response I received from Jayen's teacher. She talked to Mr. Ingram, the principal, and they are asking the whole school to show their support and wear purple next Wednesday, November 19. She is even planning on bringing in a small treat for Jayen's class and invited me to come eat lunch with them. I've ALWAYS wanted to have the school's support. I've wanted to ask the PTA to support Epilepsy Awareness but was most worried about rejection and the response that they couldn't because then they would have to do all awareness months. I'm OK with that! I think everyone needs awareness. I'm so thankful for Ms. Potter and her initiative. I know how much she loves and supports Jayen. 

The support we are receiving is amazing and leads me to sadness again. A friend of mine, Erin Seretta, recently received a devastating diagnosis for her 7 month old. Her son, Henry, was diagnosed with Leukemia. I fear for them and the isolation they might feel. I don't know exactly what they are feeling, but I remember the feeling when we were given our diagnosis. I remember the feeling of isolation while sitting in the hospital room. I remember crying every time I looked at my baby and saw all the monitors, wires, and machines. I remember wanting nothing more than to pick up my baby and run out of that hospital room and wake up from this nightmare. I pray from them and this journey they are on. I pray for this baby! This is going to be a struggle for all of them. This will forever be burned into their hearts and minds. I am here for you however I can be. I support you!

With permission to share: You can follow their story and show your support at 

Hope for Henry on Facebook. 

Always a Roller Coaster!

Life with intractable epilepsy is always a roller coaster. Just three days ago we were celebrating begin 4 weeks seizure free, then today we had a monster of a seizure. Jayen had a 12+ minute seizure and required two doses of rescue medication. After the second dose I have to call 911 to make sure he doesn't go into respiratory distress. I made the mistake of calling from my cell phone so it took a little longer to get the ambulance there. LESSON LEARNED! Usually after giving the first Diastat, Jayen responds and the seizure only lasts about 7 to 8 minutes. This time he was still seizing into the 10 minute mark. I was forced to give the second Diastat and call emergency services. Brilyn was so excited to see the "whoo whoo"! Dalan was already at a friend's house, so I called our neighbor Felicia and she was able to take Brilyn. When we got to the hospital the ER doctor was amazing. We stayed for a couple hours to make sure Jayen was breathing and everything was ok. As soon as we were discharged we ran home to get Brilyn then ran to get Dalan. Mommy is just ready for this day to be over. Ready for this roller coaster ride to be over.

 

Huge Progress!

I have been working with Brilyn on her ABC's and sing to her and Jayen in the car daily. Sometimes I hear a couple letters out of each of them, but I wanted to take inventory. I guess the teacher in me is trying to prepare for our upcoming move. I want to be able to hand over my son in a folder. So I asked Brilyn to sing for me, then asked Jayen. I was amazed!

 

Jayen made an attempt for each letter and was actually understandable on many of them. Proud mommy moment! I think daddy was pretty proud too. When talking to daddy on Skype tonight, Jayen sang his ABC's again and daddy teared up! This is amazing progress. We don't have a crystal ball and will never know what the future holds for Jayen, but this gives me so much hope. This makes me think that some day I will get the greatest gift ever ... "I love you mommy!"

Can't remember the last time

Not sure how we got here, but something is working right! Love all the support for Jayen and Epilepsy Awareness!

 

 

Our friend Renee (Nene) used her jean day at school to show her support for Jayen and Epilepsy Awareness!

 

Our friend Rikki and friends from Portal Elementary, a school I used to substitute at, all wore their purple for Jayen and others with epilepsy.

Daddy and our friend Kelly wore their Jayen shirts and ribbons for all our friends needing support for the Pensacola half marathon.

 

Happy Birthday to the Strongest 5 Year Old I know!

Happy Birthday to you! Happy birthday to you! Happy birthday my miracle baby! Happy birthday to you! We started the day off right ... Donuts with worms on them! And he didn't have to steal them out of the case before I saw!

 

 

It has become a birthday tradition in our family to bring lunch to the kids at school on their birthday. Mom and Brilyn honored that tradition and met Jayen at school with cheesy fiesta potatoes, a cool ranch taco, and a POP! Jayen was so excited to get food delivered, but was probably most excited about seeing his sister at his school. Shortly after we started eating Dalan came over and said Hi! and Happy Birthday! I think this was the highlight of Jayen's day! He loves his siblings!!!!

We had to wait for Dalan to get home from school before we could start the party, but as soon as he was done we headed for a big surprise. I had the kids guessing what we were doing and even let them give suggestions, but no one was even close. There is a place in town we have been wanting to try that I thought would be perfect for this mommy to keep THIRTY little fingers busy! Defy Gravity is an indoor trampoline park. If you know Jayen, you know how much he loves to jump on our trampoline. This place is an entire room filled with trampolines. What else would you want on your birthday? We had such a blast. I was nervous about a bunch of kids jumping around Jayen's already cut into head, but we were the ONLY ones there. I think we all had a blast. We only did 30 minutes, but I think that was just enough. After jumping we headed for Pizza Ranch! Dalan was being such an amazing helper. He is so mature. It makes me proud and sad at the same time. He has really had to grow up fast. Jayen did much better waiting for his drink this time! I took him to the buffet with me and let him put whatever he wanted on his tray. We finished dinner with a couple helpings of ice cream and quietly sang in our booth. I think the night was a huge success. The only things that would have made it better would have been daddy!

 

Happy Birthday my special five year old! I love you to the moon and back!

Less Than 48 Hours

We only had less than 48 hours with him, but we will take every second we are given. Today we have to say goodbye to daddy once again! So we took every second and made it count. In the morning we played football before church. Yes, we went to church! I loved every second I got to snuggle with my man. I loved having someone else there to help keep the kids in line.

 

 

After church we ate and headed for bowling! The lanes were malfunctioning but we made the best of it. I'm pretty sure daddy lost! We went home grab daddy's bags and head to the airport. The kids decided to squeeze in a few more minutes with daddy on the trampoline. They played ring around the roses then monkey piled on him.

 

 

We made it to the airport early enough that we could sit with daddy and watch the airplanes land and take off. We all held on to every last second would could. But eventually we have to give him up. Eventually we had to say goodbye. Eventually our life walked away again.

 

39 more days until we are together again!

HUSKER Birthday Party

We had daddy home for a super special birthday for a super special boy! Since it was game day and we won't be Nebraska residents for much longer, a Husker themed party only seemed appropriate. We let Jayen open his gift from the family right away so he could wear it for the party. We gave him a custom Husker jersey with his name on it. He loved it!!!

 

 

While daddy was home we were able to snap some photos with our new SOLD sign! Yep we sold the house in 6 days! Such a bittersweet moment. At least we are able to stay in the house until New Years.

 

Jayen loves football, the Huskers, and parties! Why not throw them all together!

 

Mommy made a replica of the jersey as the cake. Jayen thought it tasted as good as it looked!

We are so blessed to have such amazing family and friends. You made Jayen and our family feel so special. It is so hard to think that we won't have parties like this anymore. We were surrounded by the people that love us most. You all better come see us in Arizona. You all have to stay in touch.