I 80 Speedway

Mommy found a way to get free tickets to the I 80 Speedway to watch the races tonight. We haven't gone to the races in a long time. I'm always so nervous whether Jayen will enjoy himself or whether it will be too loud. Jayen did amazing. Towards the beginning of the night he would lean over and put his hands on my ears. I let him do this time and time again. I think it helped him deal with the noise.

 

 

We got the tickets from one of the racers. Tad Pospisil went to Wynot and now races the 04 late model race car. It was fan appreciation and he was giving tickets away. I'm so excited we were able to see him race but even better to see him win! After the races we went to the pits and were able to see the car up close. Jayen was in heaven, until we asked him if he wanted to sit in it. Jayen ran away from the car, but Dalan ran towards it. Tad gave Dalan a ride and even let him drive to the trailer. He was grinning from ear to ear. It was a great night. Hoping the late night doesn't bring on a seizure in the morning.

Happy Birthday Sister!

Happy Second Birthday Brilyn! Two years ago Jayen's journey with seizures started again and around the same time we were blessed with this amazing little girl. She has brought so much joy and sass to our life!

 

We celebrated by going bowling! Jay and Abby Foxhoven came with us. We love going bowling as a family! Dalan was so excited to get such a high score without using the ramp. He did amazing.

 

Guess who liked the cupcakes!

Two days of baseball!

Dalan received a free ticket to the Storm Chasers game for turning in his Book It calendars every month. We were able to purchase tickets for the rest of us at a reduced rate. We have been looking forward to the game for months. We had some extra tickets and we able to convince Tom, Tanya, Madison, Hunter, Morgan and Brooklyn to stay an extra day and go to the game with us.

 

 

Jayen was posed and ready to catch the home runs! I have never seen him stand this still. He was so excited. He loves baseball.

 



It was so much fun. Not even the rain delay could take the fun away. The kids were dancing in the rain while all the adults were taking shelter. The game was eventually called and would resume the next day. Our tickets were valid for the continuation of the first game and the next game that was scheduled.

 

Dalan must have some lucky pants on today. We convinced dad to let us go to the Storm Chasers rain delay game from last night. When we entered the stadium, some guys asked if they could ask us a question. I thought this was some survey but reluctantly said sure. They wanted to know if Dalan would be willing to go on the field at the top of the fifth to give the umpire a snack. Well sure, I think he would love it! After signing the concent form we headed towards where dad, Jayen and Brilyn were sitting. We were just a couple of feet away from where a fly ball fell but didn't get it. One of the workers saw and asked if he wanted a ball. Well of course again! Then when we were headed towards the dugout for his grand appearance another fly ball came our way but this time we were in the perfect spot and Dalan got it right away! We got to where we were supposed to meet and got to sit IN THE DUGOUT with the players. Dalan said they are litterers and they spit! He went on the field, was on the big tv, and got a t-shirt for doing it. What an awesome lucky pants day!

 

I had the most amazing family and friend filled weekend. I wish every weekend could be like this!

All Play Miracle League

This morning Jayen had baseball again. I'm so proud of him and his AMAZING coach, yep his dad! We had Brilyn's birthday party today so we invited everyone to join us for the game. Uncle John came again to be Jayen's buddy, and Grandma, Grandpa, and Allissa were able to come too.  

 

It was Jayen's turn to be the flag holder. He didn't want a whole lot to do with it, but eventually put his hand on it long enough that I could snap a picture. 

 

Nothing melts my heart more than seeing the two of them on the field. Matt has been so amazing with all the kids. I'm so amazed at his caring and compassionate attitude towards all the kids. 

 

Papa came and was able to be Jayen's buddy. I love that we get this special time with him. I don't know what we will do without them when we move. Thanks so much dad!

 

Our team, The Cubs!

Last day of school

I'm so sad that today is the last day of school for my preschooler and kindergartner! Still trying to figure out if I'm more sad that they are growing up or that they will be home all summer. I know we will have great days, but having all three home all day will be crazy again. Hopefully we can make the best out of our last summer in Nebraska for a while.

 

 

After dealing with the mess Wal-mart left me with, I finally got the teacher presents I had made. I ran to school so Jayen could give Ms. Shank her present before she went to lunch. We gave all of Jayen helpers a baggie of chocolates with bus looking wrappers and a note that said "We Wheelie Appreciate You." We wanted to give Ms. Shank, Ms. Schram, and Ms. Shelby special gifts. They have all been instrumental in Jayen's success this year. I would have been so lost without them. I'm still trying to figure out how we are going to survive without Ms. Shank next year. 

 

 

We hope they all know what they mean to us. We love you all dearly and can't wait until our paths cross again.

 

I boo'ed a teacher!

Today was Jayen's preschool celebration at Bellevue Elementary! This was such a proud mommy moment for me. Jayen has grown so much over the past year. I need to thank Ms. Shank so much for everything she has done. She was an amazing blessing in our life this past school year. I don't know where we would be without her. UNFORTUNATELY, she has informed us that she will not be Jayen's teacher next year. (insert outrageous bawling) Ms. Shank has taken a position as a mentor for new teachers in the district. We know she will do great and we are excited that she can share her expertise with many, many new teachers. She will make the world a better place! When she announced the news to the parents I boo'ed her. I wish she could be with Jayen forever, but I know that is not possible. She will still be able to visit and check in on Jayen often, as she will be the mentor for his new teacher. Thanks again Ms. Shank for being his mom away from home! The loved you showed my child will forever be in his and my heart!

 

 

Great job Jayen on a successful year. I'm so proud of all the progress you made!

 

 



 

For what seemed like at least a month or two, Jayen has been coming home and signing something to us that Matt and I couldn't understand. Matt would constantly ask me what holding your hands an inch apart meant. I tried googling it, I asked Jayen, I just assumed he was telling me something was little or big. Now we finally know!!!! Apparently Jayen wanted Taco Bell! Thanks Ms. Shank for teaching him all these new signs. Now I guess I have to take him out to eat.

What's his outcome now?

Day three was yesterday and on cue Jayen had another seizure. This was a morning seizure so it was slightly different, but non the less still a seizure. Today I am a little down and not completely sure why. I know it didn't help reading this from one of the special needs groups I belong to... "Cole passed away Tuesday morning. He had a massive seizure and aspirated. My husband checked on him and he was fine and I went in 20 minutes later and he was gone. We held him in our arms for a short time but will hold him in our hearts forever." I'm so saddened for this family and so worried whether this will be our family's fate as well. Sudden Unexplained Death is Epilepsy (SUDEP) is common in children with epilepsy. I'm a little comforted by the fact that he mostly wakes and gets out of bed before he seizures occurr, that we know of. I'm just so sad that we have gone to the extreme of extremes and still no help for my little man. What is in store for his life? Are we ever going to get these things under control? Prayers for Cole's family and all the families dealing with epilepsy!

Another new medicine

After more than a week of trying to get Jayen a new prescription, we finally heard back from the doctor and pharmacy. Our insurance denied the new drug the doctor was trying to prescribe and wants us to try something else first. As if 22 other medications didn't indicate that we have tried many others before this one. The new prescription was sent to the pharmacy only for them to inform me they needed to talk to the doctor's office again because he would then be on two different anti-epileptic medications. I kept questioning the lady on the phone. I couldn't understand why it was a big deal that he was prescribed two anti-epileptic medications. We have been on 5 at a time before. Why was this suddenly an issue? I don't understand why it is so hard to get my son help. Is this even going to be help? What's the point of another pill? We are having seizures every three days. After 22 medications is anything really going to help? I guess I will just shove another pill down his throat and hope and pray that is does something to help. First do no harm!?!?!?

Happy Mother's Day!

What a super spectacular mother's day! I was spoiled rotten. The kids and Matt got me a spi belt, a kitchenaid stand mixer, and a hand drawn portrait of our family. They took me to Mahoney Grill for lunch. After lunch we played at the activity center. My knees will take at least a week to recover! Then we headed home for a nap and crab legs for dinner. We had to finish off the night with dessert in the basement as the tornado sirens were going off. The only thing that would have made the day any better would have been good kids in church but I know how much that is asking!

I hate that he understands!

Another stinking seizure. This is ridiculous! How did we go through 20 something medications and brain surgery and we are worse now then we were before. Jayen's seizures are occurring every 3-4 days now. This one today was very upsetting, apparently for both of us. Jayen seemed to be aware of what was going on. He was still seizing, but when I told him I had to go get his medicine he started making this pouty face and getting very upset. I know he doesn't like the diastat, but was he concious enough to understand? I was very upset with how upset he was getting. I think he understands and I hate it. How do I teach him? How do I help him understand that I have to do the diastat? How do I help him understand that he has these stupid seizures and I can't do anything?

 

 

I love you buddy and I pray everyday that these seizures go away. I pray that I can give you a better life. I pray that one day you will not know or understand what seizures are.

This just can't be happening again

I'm sure I am the annoying mom at the doctor's office, but I just don't understand how this could possibly be happening. Jayen once again had a seizure when he woke up from his afternoon nap. When Jayen got out of bed I had him lay down with me in my bed. He was wiggling for a little bit then stopped. I wasn't sure if he fell back to sleep or what was happening. But the second I heard his lip smacking I knew. I rolled him over and was immediatley upset, sad, pissed, and so many other emotions. What does he have to do? What does he have to go through? Why can't these damn things go away. Waiting to hear back from Dr. Frost's office as to what to do next. It sounds like another new medicine.

 

After recovering from the seizure, mommy called daddy to see if we could make a quick trip to the zoo. Dalan is spending the night at a friends house, his first sleepover, so we wanted to do something fun with the other two. We love the zoo and hope they have something similar in comparison in Arizona. 

Frazzled and Unsure

Before surgery, Jayen's seizures were easier to manage. We knew they would only happen in the morning and we kind of had a system down. Now this new Jayen after surgery is making me so frazzled and unsure what I am supposed to be doing.
Jayen had an extremely hard time laying down for a nap today. I think going back on Ritalin is really messing with his sleep again. Since it took him so long to lay down and sleep, I had to wake him when it was time to pick up Dalan from school. I think waking Jayen is the worst possible thing to do. Waking him seems to bring on seizures, but I had to get Dalan from school. I was watching him closely, but he seemed to be fine. We got in the car and I started backing out, when sure as shit I looked back and Jayen was having a full blown seizure. I was so upset and couldn't gather my thoughts. I didn't have a diastat with me and he was getting close to the three minute mark. I had to leave soon to get Dalan or I would be late. I tried calling Matt's cell phone but he didn't answer. I quickly called his work number. I think I needed him to direct me. I left Jayen and Brilyn in the car and quickly ran into the house to get the diastat. When I got back out to the car I was trying to determine if the seizure was over or if I needed to administer the diastat. Thankfully he seemed to be done.
I'm just so unsure what to do anymore. This was a crazy situation! No diastat in the car, kids buckled in, had to get to school, and I didn't have house keys. And we just went through brain surgery. What is going on and what are we supposed to do?

Running for Special Olympics

Today mommy did something she has wanted to do for a very long time but has never actually done it. Today I ran a 5K! I actually ran the whole thing. Through a series of crazy coincidences I had the opportunity to run in the Color Me Rad 5K with Nikki Dorn, Nikki Vaughan, and Kristin Wilkinson. The run was a fundraiser for Special Olympics. I'm so proud to have completed this event and so proud of where the funds were going. What a fun day!

 

 

Can't wait to do another one. I think I will convince daddy to do it with me!

Bye Bye, NO NO

After picking Dalan up from school today we saw Ms. Shank leaving around the same time as us. She came over and told Jayen goodbye and have a great weekend. We have grown so fond of her. She is a part of our family now whether she likes it or not! I sometimes feel like we need to have her over for dinner. Well, we started driving home and noticed Ms. Shank was behind us. I was telling Jayen to wave and she would see it. Then eventually she passed us and was beside the car. Jayen was so excited he was giggling! We were driving beside each other for quite some time, but eventually had to take our exit to go home. I guess I should have warned Jayen a better because when he saw that she kept going straight and we turned he immediately started screaming and crying. He was so upset that she wasn't beside us anymore. I never want him to be upset, but how awesome does it make this mommy feel that he wants to spend that much time with her! Thank you Ms. Shank for coming into Jayen's life. You have made an incredible difference in all of our lives.

Got our shirts today!

Can you tell who is excited about supporting her brother?

We love our shirts and can't wait to see your pictures in your shirts or show us in person for the Nebraska Epilepsy Walk in August!

AGAIN?

I don't know why it happened, but it happened again. This morning Jayen woke up and had another seizure. This was his first morning seizure since surgery. I'm so frustrated! I keep getting the response to wait six months. What is going ot happen to his brain during this 6 months? What do I do for him between now and then? Why does he have to suffer? I'm trying to give this up to God but am really struggling!!!

Back to the swim of things

I don't think Jayen minded being surrounded by all these girls in the pool today. This was our first OT/PT aquatic co-treat. I was impressed with how the ladies worked on Jayen's therapy goals while in the pool. Glad we have this opportunity with PTC. Can't wait for more aquatic appointments. 

Life sentence?

Four years ago today Jayen was given a life sentence with epilepsy. That catastrophic diagnosis has changed our lives. Infantile spasms may be gone but the seizures aren't. We were even blessed with this one today. I'm so mad and angry with everything he has to go through. He even had large portions of his brain removed and still these damn things won't go away.

What did you just say?

Jayen's speech has been developing so well lately. We are so impressed with the sounds and words he is beginning to say, but I don't think either Matt nor I were prepared for what came out of his mouth today. Of course I didn't have a video camera going the first time he said it but we tried again a little later. This time Jayen had some food in his mouth so it is a little mumbled. I still couldn't believe how clear his "thank you" was! Way to go Jayen!!!! Keep talking buddy!

 

Are you ready for some Football?!?!?!?!

We are difinitely ready for some football, Husker football! This is the day we wait for all year long. Spring Game!!! We love to be able to take the kids to the spring game and let them play on the field during half time. The atmosphere at the stadium is like nothing I have experienced anywhere else. I love game days in Lincoln, Nebraska!

 During half time we went on the field and took the drug free pledge with the kids. Jack Hoffman lead the kids pledge. He had brain surgery to help his pediatric brain cancer. We were hoping to get Jayen and Jack and their matching surgery scars, but Jayen wasn't having it. I don't know why he was so scared. He is very self conscious of his scar, but never like this. I hope we didn't scare Jack too much.

 What a great day! We love our Huskers, we love game day, we love family time together. Soon enough we will be split up and on opposite sides of the United States. This time is precious and I'm so thankful for every second of it.

Appointment day

We were supposed to go see daddy's aunt this morning, but daddy wasn't feeling good. She is battling cancer and needs all the strength! We would hate to get her sick and threaten her recovery. We will make sure we can stop next time Darlene!

We decided to let daddy have a little down time to recover so we enjoyed the pool. I was very worried about Jayen getting his incision wet. I can't even imagine how much bacteria is floating in a public swimming pool. The pool was pretty cold so thankfully Jayen didn't want to dunk his head anyway.



 

After the pool we got ready to go to the hospital. Our appointment wasn't until two o'clock so we took the time to stop to see our friends from the fifth floor. We knew their candy jar would be empty so we had to bring more. We miss them so much! Jayen was a little hesitant to go through the doors, but when he saw some of our friends he light up. We miss you all so much. 

 

The kids were excited to play with the stars again! After we got them away from the stars it was time to head to see Dr. Kebriaei's office. The kids were so excited to use the kids only door and not let us go through it. What a cute idea. These are the reasons we love being on the Children's side!

 

Dr. Kebriaei was very impressed with Jayen. He thought Jayen was doing great. We are so thankful for the care he gave our son. Next check-up, three months!

After neurosurgery we headed to see our epileptologist, all the way on the other side of the hospital. We had a special surprise for Dr. Frost. We made a collage of some of the pictures of Dr. Frost getting his ninja turtle tattoo. His face was priceless when he was getting the tattoo. We have grown very fond of this man. I hope he knows how much we appreciate him and what he has done for Jayen!



 

Dr. Frost asked us to not be discouraged about Jayen's seizures. They had a patient in that had seizures for three months after surgery then they slowly decreased until she became seizure free. Hearing this did help but I am still a little discouraged. I just don't understand, if we took out all the areas where seizures originate then where are the new ones coming from? I'm trying to trust and have faith! Dr. Frost wanted to check Jayen's drug levels, so we had to go to the lab. The lab just happens to be back on the other side of the hospital. So we headed back over to the same area we were before.

 

After labs, we were invited to Melissa, Mark, Olivia, and Daniel Devaraj's house. Olivia was in the hospital the same time as Jayen and had the same procedure done. Her surgery was similar to Jayen's too. We are so glad we got to meet their family. We had an amazing time comparing stories and chatting. The kids had a blast playing with the toys they were given too. Amazing people we are glad to call friends.

 

 

We love to keep in touch and hear how things are going. Keep working on getting better! And don't worry about touching your head Olivia!