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!

VIP treatment at the Minnesota Wild game

Oh my goodness we could not have asked for better accommodations at the Minnesota Wild game. We arrived in St. Paul and checked into the hotel. Matt and I told the kids what we were doing, but Dalan wasn't excited and kept crabbing that he didn't want to go. When we got to the game we were escorted through glass door after glass door. We felt like royalty! I'm pretty sure we will never get the opportunity to do something like that again. We were escorted into our suite and told the caterer would be in shortly. There was popcorn, chips with three different dips, rice crispy bars with different toppings, brats with sour kraut, three cheese macaroni and cheese, sprite, lemonade, and water. Dalan quickly started turning things around and enjoying himself. I'm pretty sure all of us were enjoying ourselves.

 



 

The suite was donated by Dany Heatley! We wrote him a thank you note and sent him the address for this blog, so if he ever checks it out I would once again like to thank him from the bottom of my heart. I haven't seen Jayen, or any of us, smile like we did tonight. This was so amazing!

 

 

 

The kids loved being able to eat and watch the game from the countertop. Maybe it was more the excitement of getting huge rice crispie bars with chocolate chips and m&m's!

 

 

The balloon kept flying over the kids. They loved waving to it to see if they were going to be on the big tv.

 

The kids were dancing and bell ringing in the isles. Dalan and Jayen were booty shaking, and Brilyn was clapping at the players. The game went into overtime and the Wild won in a shoot out. Perfect ending!!!

 

One of the best parts of the night was also getting to share the suite with our good friends Amanda and Corey Krejce! It was such a surprise that the hospital called them and offered them tickets too. I'm so happy we got to reconnect and share the suite with them. Such an amazing family. We are so happy to know them. We love you guys!

 

 

 

Not so exciting trip just became more exciting!

When we left the hosiptal a month ago, can you believe it has been a month since surgery, Mr. Tom from Child Life told us to let him know when we were coming back for follow-up. He was going to try to get us tickets to a Minnesota Wild hockey game. We called Mr. Tom and gave him the dates but knew it was a long shot. It is getting toward the end of the season and there aren't a lot of people donating their tickets. When I hadn't heard back from him, I just figured it wasn't going to happen. Then late today I checked my email and Mr. Tom said he had tickets!!!! So exciting! Jayen, Dalan, Brilyn, and even mom and dad are going to love this! Then Mr. Tom mentioned that someone donated a suite so there would probably be a couple other Children's families. More families, awesome! A suite, awesomer! Catered too, AWESOMEST! What a fantastic surpirse for a not so exciting trip. Can't wait to share pictures!
Wish us luck. We are taking all the kids and driving six plus hours. I'm praying that all goes well with the drive. I'm praying that all goes well and we have no seizures in the car. I'm praying that the doctors can help us stop these seizures. I'm praying for a good bill of health for Jayen. He deserves it!

Seeing is believing

I'm so sad that I now have to believe that Jayen is still having seizures. The two seizures he had previously had were both when he was with daddy and I wasn't around to see them, but that had to change this morning. The kids were all getting ready for school while I was making breakfast when suddenly Jayen fell to the floor and hit his head. I was more worried about him hitting his head and wasn't paying as much attention to his eyes as I should have. I scooped him up into my arms and tried soothing him. When I looked down into his eyes my heart sunk to the floor. Jayen's eyes were getting larger then smaller then larger then smaller. I didn't want to believe at first what I knew was happening. I didn't want it to be true. I didn't want to see these damn things any more. I wanted them gone now and I want them gone forever! It didn't last long and I didn't have to administer diastat. He was a little uncoordinated but otherwise seemed fine. I on the other hand was not. Why did we just go through all of this? Why is this part of Jayen's life? What is going to stop these things? I'm mom and I'm supposed to have these magical kisses to fix all boo boo's and I just don't know where to get them from. If anyone has any extra magical kisses please send them my way. We might need a few to fix all of us.