Goodbye vroom vroom

In order to prepare for the upcoming move, Daddy has started selling off his lawn equipement. This is such a sad decision, but in Arizona there is not a need for lawn equipment when there aren't many lawns! We keep teasing him that we are going from having a lawn mowing/snow removal business to a place that has no lawns or snow. When the day came for the biggest of lawn mowers, and Jayen's favorite, to be sold, it was a sad day. One last drive was needed before Jayen could part with it! Daddy might have taken it a little too far, they were doing wheelies and 360's in the street, but he had fun! 

 

Inevitable

After such a long crazy weekend, we knew it was coming. Seizure morning. Jayen's home from school today. Guess the house will be a mess for another day ;)

Epilepsy Walk

Another early morning. We registered Jayen's Journey for the Epilepsy walk again, but had a much bigger team this year. What a day of emotions! I was blown away by the amount of support we had for Jayen. I would like to personally thank...

Grandma and Grandpa Kuchta; Allissa Kuchta; Tom, Tanya, Madison, Hunter, Morgan, and Brooklyn Kuchta; Tyler and Ryot Kuchta, Sara, Timothy, and Killian Schank; Grandpa Hochstein; Adam Hochstein; Theresa Hochstein; Nikki and McKenna Dorn; Mike, Renee, William and Mallory Loftus; Josh, Michelle and Caleb Joslin (part of Jayen's Journey for the second year); Jason, Rikki, Grant, and Aubrey Hayek (also part of Jayen's Journey for the second year); Mary Hayford; Marie, Brianna, Stephanie, and Melanie Thomalla (who came all the way from Minnesota to be here to support Jayen and their brother who passed)

If my count is right, that is 40 people who walked in support of my child!

I'm so thankful for all of them! What an amazing honor it was to have them all there.

 

Shortly before the finish line we all stopped and let our balloons go. We were letting Jayen's seizures go with them. Hoping they send our prayers to heaven and we never have seizures again.

After letting the balloons go, we were asked to let everyone go ahead of us so that they could cheer for Jayen as he crossed the finish line. We walked for a little bit as a family, then everyone started chanting Jayen's name.

We let him go and he ran across the finish line. I couldn't stop crying. I'm so thankful for everyone and everything they did.

 

We love our little miracle and hope that some day we will find a way to stop these horrible seizures.

 

 

Another new medicine

Started Banzel today. Hope this gives us relief, at least for a little bit.

BUSY BUSY BUSY!!! Baseball, Football, and Party

A very early morning for some sports! Jayen had baseball again today but the game started at 8:30. We had invited grandma and grandpa to come watch since they were going to be here for the weekend. It was so awesome to share this with them. Tom, Tanya, and family were able to join us too.

 Check out the cheerleaders!

 



What big helpers. Jayen's buddies for the game were his brother and cousin. I think they all had a great time! We might need to work on teaching them to share the ball with everyone though. The bigger boys tried helping Jayen a little too much and didn't always share the ball with the others around them.

Go Jayen, Go! Helping him round the bases!!!

 

After Jayen's baseball game we all had to run over to Dalan's football game. Dalan got to be captain! 

 

Hunter and Jayen were disappointed they couldn't play with Dalan so they decided to play on their own.

 

It was such a great morning having our family there to watch our boys growing up. I love that they both had such a great cheering squad. Thank you so much for being there and making my boys feel special!!!!

After the games we went back to the house to get everything ready for a special 6th birthday party!

Someone requested a Teenage Mutant Ninja Turtle party! Thank you Pinterest for all your help. It was such a great party!

Birthday boy and his new shirt.

Jayen made a special present for his brother. It was a picture of the two of them in their turtle clothes with a caption that says, "Sometime being a brother is better than being a superhero."

This is the thanks he got. BROTHERLY LOVE!

 

The day was hot but so perfect! I love that we have so many friends and family that can be here to help us celebrate and make my family feel so special and loved!

Butt cream painting party

So apparently there was a butt cream painting party during naptime today. I wasn't invited but rudely found out about it. What a mess!!!!! The destructor has attacked again. Picture doesn't do it justice because it was EVERYWHERE!!!

Happy Birthday Dalan!

Can you believe this man in 6? I can't! Jayen's biggest and favorite brother celebrated his birthday today! So we celebrated by having donuts in the morning, Taco Bell lunch with him at school (and peeked at Jayen while he was eating lunch), then Amazing Pizza machine with Aunt Theresa and Uncle John!

 Jayen's favorite place at the Amazing Pizza Machine has got to be the train. I guess Daddy and Brilyn wanted in on the fun too!!

 



After bumper cars, ski ball, bowling, motorcycle racing, claw machines, and so much more, we decided to try go carts. We were scared Jayen wasn't tall enough, but he just squeaked over the mark! Aunt Theresa watched Brilyn so we could race. Mommy and Jayen were in the lead the entire time, but slowed down right before the finish line so the birthday boy could tie us. Yeah, we weren't going to let them have the win outright! It was a evening full of so many laughs and more great memories!! Happy Birthday Dalan! We all love you so much and are so thankful for you. 

Getting ready for Jayen's epilepsy walk!! Mommy was having a little fun making sister's outfit. It was supposed to just be a shirt, but kind of turned into a dress. Can't wait to see everyone there on Sunday to support the Jayen and fight Epilepsy!

"MaMa" say it again!!!

After over a year, I finally heard the greatest sound in the whole wide world!!!! My little man said MaMa!!!! I made him say it over and over again. I love hearing that. Hope it stays around this time!

Zoo and Nebraska Bucket List

Today we met up with our friends the Loftus' for a zoo trip! We love the zoo and even more we love to share it with daddy and our friends. The weather was perfect, the friends were perfect, and the memories were perfect!

 

 Brilyn playing with the big kids in the aquarium!

 

The monkies staring at the gorillas. I thought we were the ones in the exhibit for a little bit. With 5 kids I was pretty thankful we were already at the zoo!

 

I love when the kids get big enough to decide what they want to see and start exploring the zoo.

Dinosaur dig. While digging for fossils we discovered a couple onery boys. We buried them up and left them for the next person to find!

The Loftus' helped us with one of our Nebraska Bucket List items. This is going to be shocking, but we had never been on the carousel at the zoo, until today! We still have to do the skyfari but I guess that mean we have to come back another day! Thank you Mike, Renee, William, and Mallory for the perfect day. We love making memories with you guys!

Flag Football

After Jayen's baseball game, lunch, and naps, we headed to Dalan's first flag football game. Jayen was in awe of his big brother!

 Football ready!

 

 The natives were getting restless so mommy had to take him for a walk! We ended up sitting down on the other side of the field. No one was around us. It was a nice moment, that lasted as long as it took daddy to get this shot!

 

Dalan was a natural. He started on defense and even pulled a flag!

 In the second half he was on offense and scored a touchdown!!!!

 

Today was such a great day watching both the boys playing sports. I am very blessed and so lucky they both are social and athletic.

 

Miracle League

I'm so glad we got hooked up with the Miracle League!!! It most definitely is a miracle. We couldn't make the first two games of the season so this was Jayen's first game. 

He got on base and was so excited!!! He kept looking at me and giving me a thumbs up!!

 

Each player's name is announced and heard throughout the stadium, every player gets to bat each inning, every player gets on base, there are no outs, and it ALWAYS ends in a tie. This was such a great experience for Jayen and our entire family. Dalan was able to be Jayen's buddy and help him out. Mommy was in tears all morning. Can't wait to come back next Saturday!

 

Tossed and turned all night long

We have been trying medicine after medicine for the past year and have had no success stopping the seizures. He is not responding to any other medicine. We are down to considering Sabril or looking into other surgical routes (VNS or otherwise). I'm having a hard time considering Sabril becasue of the possibility of vision loss. My son is almost 4 and is relatively close to his developmental age except for his speech. I'm worried about his vision and later in life. I believe that some day he will be able to drivee. A HUGE freedom that I don't want to take away from him. Even if he never talks, driving is something that every teenager dream of. I don't know that I want to take that chance of taking that away from him when there are other options that have side effects that might be less severe. Still doing my research and weighing all the options. I can't thank everyone enough for all their help/input/encouragement!!!!!

What the frick do we do now?

What do you do when you are given only shitty options for your child's health? Big bomb dropped tonight. Do we go with a drug that could permanently alter his vision or looking into surgical options? This mommy is scared shitless!!!

Second day of school, first day gone

Today is Jayen's second day of school and already I am having to call in sick for him. I was supposed to go in and eat lunch with him and the nurse. Oh yeah, he has a nurse in the classroom full time!!!! That is so exciting. I never want to put anyone in an uncomfortable situation with Jayen. I know as a SPED teacher that that is an uncomfortable situation. I am not a nurse (this is my child so it is different) so having to do the diastat and infront of the other children is EXTREMELY uncomfortable. So excited and thankful that I don't have to worry about him at school!
Maybe we can do lunch tomorrow.

First Day of Preschool 2013

Jayen was so excited to be joining big brother Dalan at school! They boys are finally in the same school. It doesn't help mommy's commute though, still going there 4 times a day.

 

Ms. Shank has this cute message outside the preschool door welcoming all the kiddos!!

Jayen found his name!

 

Hope the teachers liked their back to school treats. Jayen wasn't sure he wanted to share, but he did give them to Ms. Shank when we got to school. I wonder if he bugged her all day for them!!