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?

night frights

Matt and I have been joking around wondering what could possibly be so scary in Jayen's life that would cause him to have nightmares. I know he has seen Monsters Inc., so maybe it is Sully. We have been seeing Jayen's night frights since about the time we started decreasing his Klonopin. Or maybe when we started Melatonin. I don't know anymore. Trying to keep his decreasing schedule for the Klonopin and his increasing schedule for the Phelbamate in my head is enough to make it spin and fly off into the air like a helicopter.
Matt slept with Jayen the last two nights to see what was going on. Jayen was constantly tossing and turning, crying and laughing, and hitting in his sleep. He would periodically open his eyes then fall back to sleep. We just don't know what to do. I will try to get ahold of Dr. Frost's office tomorrow and see if they have any ideas. I think tonight we will not give him the melatonin and see if that helps at all.

One down, one up!

Today we are completely off Klonopin. We have had quite a long run with you and we are so glad to be giving you up! We talked to Dr. Frost's office today and we will be adding Felbamate as soon as we can get some baseline labs done. With the new medicine we have to watch his kidney functions and his bone marrow. SCARY!!!! I guess we will go back to doing routine lab work. (As if I didn't have enough driving around to do)

Ms. Vicki

Today was the first day Jayen missed school because of a seizure. I have never really taken the time to think about how his seizures will affect him and his schooling. I kind of knew about it in the back of my mind, but never took the time to think about it fully. I think it scares me too much!
We called in to school at 7:30 when the secretary get in. Ms. Vicki is so wonderful! I have a feeling we will get to know her quite well. At least over the phone!

Decreasing Klonopin

Started decreasing the klonopin this morning. Hoping this doesn't trigger more seizures like the last taper. We tried right before Christmas to taper off of the Vimpat and had a horrible setback. Once we are off the klonopin we are probably going to add Felbatol. That is one of the possibilities and the one that Dr. Frost wants us to start with. Let's see how this goes!

First Day of Preschool

We somewhat successfully completed our first day of preschool. If you count the email I got halfway through the day saying Jayen broke down when they tried to change his diaper so they didn't change it successfull! I just felt like the whole thing was way too rushed. We had his transition meeting on Monday the 7th and he started school on the 8th. I haven't received a handbook or anything about classroom policies or procedures. I just feel like there are so many unanswered questions and that they really didn't get a change to know Jayen before I dropped him off with a bunch of complete strangers.

 

Thankfully our wonderful services coordinator volunteered to go to Jayen's school and check on him and hang out for a little bit. I think it made Jayen feel good but probably made mommy feel even better!

Remember, "I love you Buddy, and ALWAYS do your best!"

Kissing hand

Just read THE KISSING HAND to Jayen. He has his first day of school tomorrow and I hope he takes his kissing hand with him. I know I will need mine. I balled just reading the story. Happy first day of school buddy. I know you will move mountains!!!

After the holidays

We have called Dr. Frost a few times the past couple of weeks, but were told each time that we would make adjustments "after the holidays". Well it is now after the holidays and I am not hearing anything back. Jayen had a seizure on Tuesday. I called on Wednesday, Thursday, and was told I would get a call back after the nurse talked to the doctor, still haven't heard anything. Guess I'll call again on Monday.

No more monkeys jumping in the tub

 Mommy and daddy tell him constantly not to jump in the tub; one - because he always makes a big mess and two - because you could fall and get hurt.
Well I think we did both! Jayen jumped in the tub and hit his head on the side. It immediately bubbled up and turned black and blue. Daddy tried to get him to put an ice pack on it but I think they both got bored with it and decided to sleep instead ;) ALWAYS SOMETHING!

 

RED LIGHT!

What a horrible horrible horrible (and I might add no good, very bad) night. Jayen was up ALL night long. He is on 3mg of melatonin (an adults dose) and still isn't sleeping through the night. So, of course, what happens this morning? A great big ol' seizure.  It had been two weeks since the last one and I really thought we were on a better path. Mommy is so exhausted. Physically, emotionally, mentally, and whatever else you can think of. This has to stop! Jayen's seizures and all his medical care is killing me. Then on top of it I have to jump through hoops for the doctors because of Brilyn's weight. I just have small babies. And to top it all, I have to see an edocrinologist on Friday for my thyroid. I'm scared shitless and really just need to leave my life for a little bit and come back refreshed.

Family pictures

 We had our family pictures taken again! What a beautiful family I am blessed with.

 

no more weaning

While trying to wean off the vimpat we have sprung a leak. Jayen has been having seizures almost every three days. They are horrible and lasting longer each time. Dr. Frost's office advised us to go back up on the vimpat to 25mg in the morning and 50 mg in the evening. This is nearly back to our original dose. I'm ok with that if it means we get these to stop or even slow to where we were before. This is ridiculous!

Got this from the mom I met in Minnesota - quite fitting!

The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
...

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter.
"This one gets twins.
"This one gets a son.
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

 

I know He doesn't give me more than I can handle, but I often question why I was chosen.

Weaning off Vimpat

Our weaning process is not going well. When we left Dr. Frost's office, he wanted us to start taking Jayen off the Vimpat and Klonopin. We started with the Vimpat by half pill once a day. On the 14th we were 1/2 pill in the morning and full pill at night. Then on Monday the 19th and every proceeding Monday we decrease another 1/2 pill. Jayen's last seizure was on the 13th (the day we were in to see Dr. Frost) but since starting the decrease He has had one on the 18th, 21st, and 24th. I just don't know what to do. Still waiting to talk to the nurse and see if we continue with the decrease. I hate waiting!

Yet another

I'm still waiting to hear back from Dr. Frost's office about Jayen's seizure on Thursday but now I have to update them on the one he had this morning as well.
A horrible night followed by a horrible morning. Brilyn woke up in the middle of the night crying. I went to check on her and she had puked everywhere and was laying in it face down. It was so scary. I screamed and Matt came in to help. We cleaned her up but I was too scared to let her sleep in her bed. So she slept in our room and I slept with one eye open. A little later Jayen woke up screaming, but when we went in to check on him he was fast asleep. I don't know what happened but this morning when he woke up he had another seizure. Thank God we are headed to Minnesota next week. We need to get this figured out!

3 YEARS OLD!

I can't believe my baby boy is 3. Where has the time gone? Yeah I know, it has been spent going to doctor after doctor, occupational therapy, speech therapy, physical therapy, ER visits, public school visits, and appointments galore. It has been the craziest 3 years of my life, but I wouldn't trade you for anything. I love you little man!

Sixth Diastat

It has been two weeks since Jayen's last seizure. I have been waiting for this one. I knew it was coming. This morning Jayen had another seizure. It was similar to what he usually has. I know that he is physically drained when he has seizures but mommy is emotionally drained. I can't wrap my brain around how it would feel to not worry, to not have to wake up in a panic everyday wondering if we/he will have another one. Yes, I said we. I feel a different pain. I feel this helplessness. I know this isn't about me, but I don't know how long I can continue this. Mommy is loosing it!
Jayen's birthday is this weekend and all I wish is for these damn things to go away!

Late night ER visit

It never ends! This poor kid can never catch a break. Jayen was playing outside with daddy and Dalan when he tripped and hit his mouth on the glass from our power meter. Bottom lip was swollen and bruised but the top lip was so scraped you could see the root of his tooth. Went to ER to make sure everything was ok.

 

Fifth Diastat

Jayen just had a convulsive seizure. Although it was horrific to watch, the question I got afterwards was just as bad. Dalan asked me if Jayen was going to die because of his seizures. Of course I tried to comfort him and tell him of course not, but the question made me start to wonder what is in store for him. What will his life be like? Will this ever end?

I hate doctors

I hate doctors, is going to be Jayen's new motto. He was kind of put through the ringer today. We went in to get a wart taken care of on his foot. We have been trying to get rid of it for a couple months now using the bandaid things, but it isn't working. He ended up getting four warts frozen off. We were told one of them was so big it could take two or three more times to take it completely off. I could hear him screaming from the waiting room. Good thing daddy was there to help him. Mommy can't hold him down anymore.
After the wart fiasco we had to go get our flu mists. But apparently Jayen missed the mist cutoff by two weeks and had to get the shot instead. Poor baby. Again had to be held down. I really think his mind is saying "I hate doctors!"

Fourth Diastat

DADDY'S POST...

4 months of seizures longest so far, then gone for a couple weeks and came back this morning. Sorry Jayen. Hope we can get them to stop soon....

Third Diastat

I think we are going to be doing these often. Another seizure this morning and another Diastat. This was the first one I had to do by myself. It was a little more difficult. I didn't ask Dalan to help because I don't want him to see what we have to do to Jayen with the Diastat, but I have told him about it. He knows what we do, but I just don't want him to have that image in his mind. I want him to look at his brother and not see that. I think Jayen knows what is to come now too. He really didn't want me to pull down his pants or put his leg to the side. I cry just thinking about it. I wish there was something else I could do. I have accepted that fact that I have to do it. I know that research says that seizures under 5 minutes are not supposed to cause any brain damagae, so Jayen's seizures lasting 6-7 minutes are very scary. It is worth it to do the medicine. I'm just scared that they are going to be something we are doing frequently.
Jayen's seizures started again in May and we are now in September. This is the longest we have ever been unable to control them. I worry that we aren't on the right path. I worry that we aren't going to stop these now. I worry about his future. I worry about having a normal life, driving, drinking, playing sports. What will his life be like. This will always be a part of him, but how can I help?

ALWAYS SOMETHING!

Why is it always something with this kid? Jayen woke up this morning at Grandma and Grandpa Kuchta's house with swelling on the back of his left ear. It was so swollen it was pushing his ear out. He looked so silly. I was really worried about what it could have been. Was it infected, was it a bug bite, did he hit it on something, why didn't I see this yesterday? We drove straight to the urgent care clinic in Bellevue. The nurse practitioner thought it was an allergic reaction to some kind of bite, but wasn't sure. She told us to try children's claritin and gave us a steroid prescription and an antibiotic. We were to try the claritin and steroid and if it wasn't better in the morning then do the antibiotic. Put the kid to bed with a few too many meds tonight. Three syringes and eleven pills. Too much for a two year old!!

increase

Jayen had another seizure today. Second time giving Diastat. I HATE THAT STUFF! I don't think Jayen really knows what is going on when he has a seizure, but he grimaces and whines when we give it to him. I called Minnesota and they said to increase the Vimpat to twice a day. Hope this helps.

New Medicine

Doctor's office called back yesterday and wants us to start a new medicine called Vimpat. I'm a little nervous because I think the nurse talked about the side effects for a good ten minutes. I have to keep a very close eye on him since the Vimpat could interact with his Lamictal. I just hope we can find something that works. I'm really getting nervous. We usually can control them relatively quickly, but this time it is taking longer to find the right concoction.
Jayen's current drug regimen includes a B6 vitamin, 50 MG Lamictal in the morning and 100 MG at night, 125 MG Zonegram at night, 2 ML Klonopin, and 25 MG Vimpat at night.

Diastat disaster

After talking with Dr. Frost's office about Jayen's last seizure (on the 6th) we discussed that from now on if Jayen has a seizure lasting longer than 3 minutes we have to give him the Diastat. I'm so nervous, scared, pissed, and all other kinds of emotions. Who wants to give their child a rectal medicine that is supposed to stop a seizure? What are the side effects? What is he going to be like afterwards? What is Dalan going to say when he sees this?
Well a few of my worries and questions were answered today. Jayen had a seizure this morning. At three minutes we gave him the diastat. THANK GOD Matt was still home to help me do it. I don't know that I could have gone through that by myself. Jayen's seizure continued for another 3 minutes then he fell asleep. This is typical behavior, but I wasn't sure how long he would sleep for or how he would act after. Would he be drugged for the rest of the day?
I didn't want to wake Jayen up to take Dalan to school. Matt was able to come get him and take him to school. I emailed his teacher to let her know that if this happens again that I probably won't have anyone to take Dalan to school. That I would have to let Jayen sleep and bring Dalan in when he wakes up. I hope Dalan is going to be loving and understanding about it. He has had to do a lot to help his brother out. I hope he never feels like it is a burden.

Knock on wood again

I called Dr. Frost's office Monday to update them on Jayen. I didn't hear back from them so I called again Tuesday. We decided that since Jayen had been seizure free since last Thursday that we would go ahead and cancel his appointment for Friday. Well aparently I didn't knock on wood because he woke up this morning and had a seizure. I'm thankful that Matt was here and able to help because this was our first time giving the diastat. I'm not sure what it is supposed to do because Jayen seemed to go about like he usually does. He seized for another 3 minutes then slept for about an hour. I need to do some more research to see what the side effects are. THIS SUCKS!!!

SPED teacher with no skills

Church this morning was AWFUL! Jayen was so crazy and all over the place. Matt and I have noticed that quite often we get head shakes and stares because of Jayen's behavior. This has started to bother me more and more. I'm not sure how to approach these gestures of displeasure from others in a place that teaches not to judge. I thought this would be one of the most welcoming places we could be. We actually really love that there is a child with down syndrome that serves every Sunday. How welcoming everyone is to her and how welcoming we were hoping the would be towards Jayen. I sure don't feel welcome!
Today Jayen was extra extra crabby and crazy. I eventually had to take him out of church two separate times, when we came back in he was still being bad. I ended up holding him the rest of mass but was head butted in the eye, hit with a tractor, hit with his hands. I was exhausted after church; physically and emotionally. On the way home I broke down crying. I am a special education teacher. I have had training and experience working with children with special needs, but when it comes to my own child I DON'T KNOW WHAT THE HELL I AM DOING! What can I do? How do I help him? How do I teach him? How do I get through the day/week/month/year? Feeling really down!

Another seizure

It has been two weeks since our last seizure and I was starting to get a little hopeful that we had found the right dosing and medicines to control them again. I was wrong! This morning Jayen woke up and had another pretty big seizure. It would not stop. When we thought it was over we laid him in bed so his brain could sleep and recover, but I had noticed his hand grabbing at the sheets. His seizure lasted close to seven minutes. I don't know where to go from here. I'll call Minnesota on Monday. Is this ever going to end?

2012 Nebraska Epilepsy Walk

It was such a beautiful day for a walk. Matt and I decided very last minute that we were going to participate in the 2012 Nebraska Epilepsy Walk at Shadow Lake Town Center. We created a team called Jayen's Journey, raised a little money ($465 to be exact), and had a few friends join us. It was such an awesome feeling. Everyone was so welcoming and accepting of Jayen. No one was looking at us funny when he screamed at the top of his lungs or wouldn't listen when mommy told him to do something 500 times. They were curious who we were walking for and how he was doing. I felt like for once in his life he was the "normal" and I kind of felt like the outcast. I was so proud of him! I was so proud of my husband for helping me put our team together in such a short amount of time and the money he raised. I was proud of Dalan for being such a great big brother. I was proud of my family. I was PROUD of where we are in life!
Thanks everyone who supported us. Thanks Colorado Foxhovens, Michelle Carranza, James and Stacy Kreikemeier, Maria Bovastro, AGE shop, FTD instructors, Bob Foxhoven, Charles Foxhoven, Naomi Hutchinson, Josh and Caleb Joslin, Rikki, Jason and Grant Hayek, and Theresa Hochstein. You all made me so proud!

Dalan got a spiderman (face paint) tattoo

Charles thought he needed one too. Dalan promised him it wouldn't hurt.