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!!

Jayen did it!

I have this funny feeling that those will be Brilyn's favorite words...Jayen did it! It was such a hectic, crazy night. We had open house for school (can't believe they start tomorrow), daddy was trying to meet up with someone, and we had our first football practice. In the midst of mommy trying to make a quick meal before we headed out the door again, this is what we discovered. No one will admit to anything. Kind of hard to ask the youngest two when neither one can speak a word. AHHHH! At least we don't have pictures scheduled anytime soon!

 

Guess who's back, Back again. Toth is back, tell a friend!!!

I think I have been singing this silly little version of Eminem in my head all day!!! I can't explain how excited I am that our FAVORITE DOCTOR EVER is back. I was a little jealous when Matt and the kids got to see him when I was out of town. Ok, very jealous!!!!! This is going to be so bitter sweet. I'm am unbelievably happy that we get him for the next ten months, but so unbelievably upset that it is only for 10 more months. I know he will have such great insight for me. Especially since he just went through the PCS process.
Going back to singing now!!!!

Fishing with friends

We had a great day attempting to fish with our friends Nikki and Brecon. I was pretty proud of the two mommies for doing this with no help. We even used stink bait. Thanks Nikki, we won't be doing that again! The older boys had free range of the pond and kind of wondered off so Jayen was stuck with the girls. After getting his "hook" stuck on every piece of seaweed possible, I finally took it off and just let him pretend to cast. After Jayen had his fill, we picked up our stuff and went to join the big boys. We didn't catch anything and ended up loosing a couple things including Brilyn's new fishing pole. What a day!!! Just as we were packing up and getting ready to drive off, Brecon ran up to us and made us come see what he caught. A nice one!!!

We went back to the pond with daddy that night and we were able to retrieve Brilyn's pole!

B B B Boat

We have been lucky enough to have a weekend free to be able to enjoy our boat! The kids love taking it out and even getting the opportunity to "drive". To our amazement, Dalan wanted to go on the tube. Daddy kept asking him if he was sure. I hit him and said stop asking or he won't do it.

Wish we could have gotten Jayen out there too. Might have to wait a few more years!!!!

We are all learning sign language

I have been wanting to do this for months and finally found someone to help me. Every Sunday the kids go to to Children's Literature. There is an opening song that is sung everytime and I wished I could sign it for Jayen. Well now I know how!!!!

Come and join the circle,

Come and take my hand.

Come and join the circle,

Come and be my friend.

Gather round and see

what the world can be.

Come and join the circle,

Come and share God's word with me.

Railroad Days

We have been wanting to do railroad days since we have kids big enough to say "Choo Choo"! So glad we finally were able to do it. I had the best time ever, pretty sure everyone else did too.

You can see Jayen's excitement when he got to ride the minature train. He had a smile that stretched from ear to ear.

We all got to ride on a little bigger version. I love seeing their smiles and excitement.

Kenefick Park

We always see these trains on the hill when we come back from grandma and grandpa's house, but have never stopped to see them. They were so HUGE! I didn't realize how big trains really are.

The boys were even excited to ride on a BUS! WHOOOOOO. Glad you like it boys. You might be riding a few more of those soon!

We even liked the trolley!

I 80 speedway

 We were able to score free tickets to the races two weekends in a row. We saw Lightning McQueen, Mater, Chick Hicks, and Doc Hudson. Last Friday they had kid box car races, Dalan decorated a box and ran his little heart out to try and win the race. This Friday though they had free rides in the cars too. The boys were so excited. What a great weekend. Tomorrow Railroad Days!!!

 

Saturday morning tradition

Apparently there is a tradition in my house that has been going on for centuries (ok, at least a year) that I was recently privileged to. Every morning Jayen requests a peanut butter and bread sandwich. He isn't a fan of cereal and only occasionally will deviate and have a toaster strudel. BUT when it comes to the milk in the bottom of Dad's cereal bowl, it must have his name on it. Apparently the two of them have a tradition, dad eats the cereal and Jayen get the milk and cereal bits. What a cute tradition!!!

Pee Pee in the potty! Pee pee in the potty!

MY BABY BOY JUST WENT POTTY IN THE TOILET!!!!! I am jumping up and down screaming/yelling. He got candy, balloons, claps, high fives.... I didn't think he would ever be potty trained. There is hope yet!

Had to wait?!

Of course he had to wait until mom and dad got home to have another seizure. Glad he didn't have one when we were gone, but not happy he has them when we are back. AHHHHHHH I HATE SEIZURES!

waiting, waiting, waiting...

Mommy just told daddy yesterday that if Jayen didn't have a seizure before we go they go on vacation she would probably worry about it the whole time! Well, I guess I can worry less. Jayen had another seizure this morning. Waiting to hear back from Dr. Frost's office about what they would like to do.

Best of friends! Worst of Enemies?

About a week ago Matt's sister, Theresa took Jayen out for the day. It was so nice to be able to get things done around the house without the tornado coming behind you and messing it back up. Jayen needs constant attention and supervision. I feel like all day long I am redirecting him. He is always messing with his brother or sister, so someone else having him was a blessing. I was surprised, shocked even, when Dalan started moping around the house. He was "BORED" without Jayen. Oh how they fight all day but truly love eachother.
Well it is even funnier now that Dalan is in a pre-Kindergarten summer school program and is gone all day. I have seen the same "BORED" look from Jayen. He is kind of moping around the house in the afternoon. I guess they will always be best of friends, but not so sure about the worst of enemies anymore ;)

Crazy Monkeys

Decided to do a last minute zoo trip with daddy. We get so few days with him so a night at the zoo was needed. Guess they feel most at home here.

 

Summer School

Jayen's first day of summer school. New school and he is taking it like a champ! I am so proud of him. Hope we don't have the same toileting issues we did before.

 

Not excited Jayen had a seizure but excited Allissa was here to give him his diastat. I think we both feel a little more comfortable when the kids stay with her for a week. Thanks 'Lis!!!!

I feel like I am set on repeat

After telling Jayen probably 100 times to cover his mouth when he coughs, look who finally listened! I guess I just need to keep harping about everything else.

An ENTIRE YEAR

Jayen has had seizures for an entire year straight today. I remember getting ready to go to the hospital to have our new baby girl and seeing Jayen have a seizure after one year and four days seizure free. We have never been unable to control his seizures for this long. We are in new territory and I am fearful this is something Jayen will live with for the rest of his life. We have quickly learned (with Jayen in preschool now) how often he is excluded or things have to be modified to work for him. This is our life... Our Crazy Journey!

Last day of school

Today was Jayen's last day of school, but it started off really bad. Of all the days today had to be a seizure day. I was really worried he was going to miss out on all the fun activities planned for the last day of school. It was Jayen's first field day and the rule is that if he has a seizure he doesn't go to school. So instead of calling the secretary as usual, I emailed the teacher and asked if I was with him today if he could still attend. She was more than willing to let him join in the fun. So I just had to find someone to watch the other two kids within a moment's notice. Thankfully Uncle John was home until 11 and daddy could get them on his lunch break. It all worked out for the best and mommy got some great time in with Jayen!

Jayen Loved the parachute!

 

Then we celebrated with McDonald's. Don't tell Dalan!

Family Bowling Fun

We love bowling!!! After the near perfect church experience today we decided to celebrate with a bowling trip.

Mommy won, but "it is still fun to play!" As we remind Dalan everytime. We all enjoy going bowling! Brilyn even took a turn. We think she really just wanted to crawl to the end and knock them down herself. She tried but we caught her before she made it to the end ;)

We love ONFI!!!! But still another seizure

Well 17 days seizure free is a great start! I will call Minnesota on Monday and see what we want to do, but I am so happy we are getting somewhere. I knew this was going to be a good medicine. I should have pushed for it sooner like I wanted to. I need to start going with my gut a little more. Someday I will be able to stand up for you buddy and be your biggest voice!

He gets it!

Daddy came home for lunch today, as he usually does. We all ate lunch, cleaned up our mess, then daddy was getting ready to leave. He came around giving each of us a kiss and hug and telling us goodbye, this is our daily routine. But Jayen noticed something a little different today. As Matt was walking out the door to head back to work, Jayen started yelling "Ha Ha" and pointing to his head. Daddy forgot to take his hat with him. The hat was on top of a shelf and was barely visible to anyone else. I couldn't believe he caught that oversight. He really does understand so much more than we think!!!

FINALLY STARTING ONFI!

I have been waiting for this drug for months now. We have tried all the other drugs Dr. Frost wanted us to try and now we finally get to the one mommy was hoping for. I had heard so many great things about Onfi. I really hope this is Jayen's miracle drug too. Started it tonight. Praying for some seizure relief!!

I can do it!

After Jayen's fever finally broke, he wanted to go outside for a little bit. When I went to check on him this is what I saw! He has been working on riding a bike for at least a year now.

 

Way to go buddy! I am so proud of you. Can't wait to go bike riding with you at the park!

Will he ever?

We are completely off the Trileptol today. Just waiting for Dr. Frost's office to call me back and let me know what the next step is. I was really worried that we were going to have a seizure this weekend. We were out of town visiting family AGAIN! Friday night we went to see my brother and his family at their campsite in Yankton, SD. My nieces and nephew kept asking if the kids could stay the night with them. I guess I had never thought about Jayen doing sleepovers before. I immediately froze. I think his life flashed before my eyes. I couldn't stop playing scenarios in my head. What would happen if he spent the night and had a seizure in the morning? If I don't let him stay will he be missing out on these crucial moments with his cousins? Will he ever be able to go to a sleep over? Will any other parents ever be willing to have him over knowing there is a possibility of a seizure in the morning? That is a huge responisibility.
I hope his life is filled with wonderful memories of "normal" kid activities. I hope and pray that we can get these damn things under control again.

Three dreadful years

Three years ago today we learned our son's fate. Every day for three years my heart has been breaking. We are still left with so many unknowns. Infantile Spasms will never have my son, my son had infantile spasms. Stay strong Jayen Hochstein. Some day we will beat these seizures!

Finally has an ID

Jayen finally has a medical ID! We have been tossing around the idea of getting him one for about three years now. I guess it was finally time!

We wanted something that would be cool enough that he would want to wear it, but resistant enough for our holy terror. It is a velcro strap with a pocket on the inside. In the pocket there is a waterproof, pull out tag that we could add all his information to.

 

So far he has done a pretty good job of keeping it on. We had Dalan wear his slap bracelet so Jayen thought he was being just as cool as Dalan. I guess he gives in to peer pressure. We might have to work on that one, but in this case was to our advantage ;)

GO BIG RED and Go away seizures!

Woke up this morning at the hotel to Jayen having a seizure.We were in Lincoln to watch the Husker Red and White Game.  I was so scared we were going to have to call the ambulance to the hotel. Thankfully it was only about 5-6 minutes long so no second diastat or ambulance was required. What are we going to do? I just want him to have a normal life. I want to not wake up and stare at him without blinking just to watch and make sure that he isn't going to have another seizure.

decreasing Trileptol

DUM DUM DUM, ANOTHER ONE BITES THE DUST! Well tried and failed at another medicine. Trileptol not working. Decreasing this one then on to another.

Another afternoon crazy seizure

On our way home from Easter celebrations Jayen had another seizure in the car, another afternoon seizure. Thankfully Matt was with us and was able to help. This one wasn't nearly as long as the other one, about 8 minutes. I was ready to call Onstar to see where the nearest hospital was. Thankfully the seizure stopped and we were able to make it all the way home. I pray these stop!

The way WE see things

Today we were watching a movie at Grandma and Grandpa Kuchta's house with our cousins Madison, Hunter, Morgan, and Brooklyn. They bought us the movie "Rise of the Guardians" for Easter. It was such a cute movie, but the cutest part didn't even come from a line on the movie. It came from Dalan. He was laying beside his older cousin Madison and was asking her questions throughout, but one question broke my heart. The character Sandman didn't talk. Dalan leaned over to Madison and said, "Why doesn't Sandman talk?" Madison replied I don't know. Dalan's quick whitted answer shocked me and I broke into tears. He said, "Oh he must have seizures like Jayen!" WOW!!!
I love that he doesn't see his brother as different. Everyone else must be like his brother. I love that little boy and am so thankful that Jayen has him looking out for him for the rest of his life!

WTF was that???

On the way to mom and dad's tonight Jayen had a seizure in the car. I was on the interstate talking to Nikki Vaughan and noticed Jayen hunched over. This was so crazy!!! He was shaking in his arms and legs. 12 1/2 minute later he started coming to. I have never seen anything like it from him. And of course, daddy was gone. He was on a fishing trip with some friends.
I called Dr. Frost's office and they increase his trileptal and gave us a new seizure plan with his diastat. Now we need to have to give him a second diastat if the seizure lasts longer than 10 minutes. If we have to give him a second one then we need to call 911. A second diastat can cause respitory distress so we need to have emergency management available. This scares the crap out of me.
I emailed Jayen's teacher and realized there are so many people I need to share this new information with. Better get to work!

Started Trileptal

After seizures on Saturday and Monday, we needed to do some medicine changes. Today we are adding Trileptal. Still not the medicine mommy wants to try, but we will do what the doctor orders. Hoping this works and doesn't have a ton of side effects!!!

Noticable Improvement

Jayen's teacher stopped me after school today and asked if we have made any medicine changes lately. Wow, what a great sign! Yes we have! She stated that he has been a little more stable and attentive in class. I am so happy we get rid of the Felbamate!

off of Felbamate

Today is our first day completely off of the Felbamate. We have been sleeping great since we started tapering on Friday. I am so thankful! We are not sure what we will do next but we are excited to be on this path!

Prayers Answered???

I don't know how it happened, must have been some extra prayers, but Jayen slept through the night. (Hasn't happened in over 3 months) I had to wake him up for school this morning. Kept a pretty close eye on him. I was sure he was going to have a seizure. No seizure but very unsteady on his feet. Kept him home from school. Still waiting to hear from Frost's office.

HELP ME SLEEP!

Called Dr. Frost's office today. We just can't keep doing this. Last night Jayen was up from 2AM to 5AM. Then Brilyn woke up at 5 to eat. Mommy is running on empty, Jayen is running on borrowed time, and daddy is chugging through. Dalan seems to be doing ok, but I worry since they share a room. Jayen often climbs the ladder to climb in Dalan's bed at night so he is woken up multiple times. I think we might have to head up for an overnight in Minnesota again. I am just at such a loss as to what to do. I would love for the Felbatol to be gone. It is not helping seizure control and could possibly be adding to the insomnia. (It is a known side effect of the Felbatol.) We just all need some sleep and SOON!

What is this?

Well we have been doing melatonin and klonopin for 12 nights now and haven't seen a huge success. Things have changed a little. Jayen is doing great at falling asleep with the melatonin so we will keep that going, but he is still waking in the middle of the night. Things aren't as bad as they used to be but I can't really figure out what is better. I think he isn't screaming as much. We are also giving in a little more, since we are all sleep deprived, and letting Jayen sleep with us or one of us sleeping with him. I just don't know what to think these "night frights" are. Are they seizures? Is it something more we need to be concerned with?
When we left Grandma and Grandpa Kuchta's this weekend the kids fell asleep in the car on the way home. An hour into the drive Jayen was screaming and tossing in his carseat. It seemed as though something was hurting him. He was inconsolable. He wouldn't let me hold his had or touch him at all. The screaming lasted for about 4 minutes then he slowly fell back to sleep only for it to happen again 15 minutes later.
I don't know if it would be beneficial to do the EEG again to rule out if these are seizures or what we should do. I just want him to be rested and healthy.

I do it myself!

Mommy taught Jayen how to put his coat on and today he did it ALL BY HIMSELF! He was pushing me away and wanted to do it on his own. I am so proud of him and the look on his face tells he how proud he is of himself! Awesome job Jayen!

Sleepful nights

Talked to Carol, from Dr. Frost's office, today about the Klonopin addition. Last night was interesting. It took Jayen F.O.R.E.V.E.R. to fall asleep (bedtime at 8 but didn't fall asleep until midnight) but then slept through the night. I repeat, he slept through the night!!!! I would have thrown a party, but Brilyn decided it was her night to not sleep so I was still awake most of the night. Carol and I agreed that doing Melatonin to help him fall asleep and Klonopin to keep him asleep will hopefully be a great combination. We will try it this weekend and see how things go. Wish us many sleepful nights!

back on Klonopin

Well sleep has been minimal lately. After trying the melatonin and finding unsuccessful results we all agreed it would would be in Jayen's best interest to start him back on the Klonopin. We will try a whole pill of the Klonopin and no melatonin. I am so disgusted we have to do this, but know that he needs his sleep too. (WE ALL DO!) We will try it and see how it goes.

sleep deprived and frustrated

I think I have been too sleep deprived to update anything lately. Jayen continues to wake up screaming in the middle on the night. We have such a hard time getting him to stay in his bed and go back to sleep after he wakes. I think Matt might have bruises on his legs from me kicking and telling him it is HIS TURN! Said in the most sleep deprived, frustrated voice I have. We are typically awake from 2 AM to at least 4 AM then I think one of us gives in an ends up sleeping in his bed or having him sleep in ours. WE NEED TO GET THIS FIGURED OUT!!! I'm desperate for some good sleep.

Jayen continues to have weekly, if not more frequent, seizures. We started Felbamate January 17th and haven't see any improvement. He had seizures on January 30th, February 2nd, and now today the 5th. I can't remember the last time we had three in one week. I'm slowly loosing hope that we will get these under control again. We have never been this long with seizures. Why can't we stop them? Why can't I give him a normal life?