Today the kids became officially enrolled in Sonoran Heights Elementary! As I learned in our first meeting, they did not have any support for Jayen in the classroom but no one bothered to tell me that the nurse was going to be gone today too. Who am I supposed to trust to give him his diastat if he were to have a seizure? The teacher hasn't been trained and the only person who could possibly do it is gone. So I ended up staying with him all morning. On Monday's the kids get out early for staff development so I was only in the classroom from 9 until 10:45. I have some worries but hopefully we can get past all of these soon! We will have to see what happens tomorrow since I'm sure they didn't hire someone in one day!
I wasn't worried about Dalan starting his first day in a new school, but maybe should have been. He talked a good game and seemed like this was going to be no big deal. After meeting the school psychologist at the front office we walked to Dalan's room first. He was cool and confident until we opened the door to walk in. He clammed up and hid behind me as Jayen swung the door open and strolled right in. As the teacher approached so did two boys. The boys said hi and asked Dalan what his name was. I was so impressed and excited that they welcomed him so willingly. But the teacher quickly asked them to sit back down. Dalan finally let go of my leg and started warming up. I left him hoping and praying that his first day would be fun! Then walked out of the room quickly before he saw me crying! I know he will do great!
This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Monday, January 26, 2015
Sunday, January 25, 2015
Our First Visitors!
We don't have any where for you to sit or any cooking utensils to make you something to eat, but by all means please stop! I need some familiar faces and a friend to hug and lean on. Thankfully we had a friend waiting for us to get here. Brandon Gothier is a friend of Matt and I's from high school. He has been living in this area for quite some time. He came over with his two little kids. My kids were so excited to have instant friends.
Our first fire! We had a few boxes we brought with us and unpacked so there was something to burn in the fire pit!
Everyone seemed to hit it off great! We even found the girls playing dress up in Brilyn's closet. I can't wait for more play dates with the Gothiers! Come back again soon! Next time we will have some furniture and I will cook!
Saturday, January 24, 2015
It is finally ours! We are no longer homeless!
We are no longer homeless! We had our walkthrough, signed all the paperwork, and now today it is officially ours. Furniture and house hold goods won't get delivered until Monday, so we are taking the time to clean and paint.
As much as we loved the purple to support Jayen and epilepsy, it just wasn't what Dalan wanted in a room. He had a Seahawk room in mind!
Love the finished product! Who's ready for the Super Bowl?
We didn't have a specific color scheme in mind for Brilyn's room but had a lot of paint left over from the previous owner. We decided to mix a new color with what we already had. Two different blues and a quart of white and we had a beautiful Caribbean blue. It actually accented her new Frozen bedding very well. Who doesn't love free and Frozen?
I had an idea in my head of how I wanted Jayen's Spider-man room to look, but Matt was able to pull that idea out of my head and make it a reality. It only took a few choice words but the end result was perfect.
Hopefully having a room that is just their own and exactly what they dreamed of will make this transition a little easier. Better paint mommy's room soon because this transition is super hard on me.
Thursday, January 22, 2015
Meeting with the boys' new school
I wanted to make sure everyone was prepared for Jayen at the new school. I had sent his IEP and MDT to the school ahead of time and asked that they contact his teacher and nurse if they had any questions. When I learned they hadn't reached out to anyone I was a little nervous.
I don't know that they were truly understanding what needs Jayen will bring to the classroom. I was extremely disappointed to learn that they don't have support for him in the classroom. The excuse I was given was that they can't hire until the child is officially enrolled in the school. A child is not enrolled in a school until they complete their first day of class. So he has to go to school for a day before they even consider his needs? This seems crazy? Well, let's see what happens Monday!
I don't know that they were truly understanding what needs Jayen will bring to the classroom. I was extremely disappointed to learn that they don't have support for him in the classroom. The excuse I was given was that they can't hire until the child is officially enrolled in the school. A child is not enrolled in a school until they complete their first day of class. So he has to go to school for a day before they even consider his needs? This seems crazy? Well, let's see what happens Monday!
Tuesday, January 20, 2015
Mommy's planned stop
The boys used to love the movie Cars. Their room in Bellevue was all Cars themed. We learned of a place in Holbrook that was the inspiration for parts of the movie. I really wanted to take the kids to the Cozy Cone Motel. The inspiration came from the Wigmam. The old cars really made you feel like you transported into a different time. The stop was a great place to get out and stretch and see something new and different. But the drive isn't over so we need to push on.
We are hoping to make it to Tami Babcock's house before dark. I'm not sure how fond I will be of driving in the mountains and even less fond of doing it in the dark. We have to keep the show moving.
Monday, January 19, 2015
My heart will always be in Nebraska
Today is moving day. Today is the day I say goodbye to everything and everyone I know. We drove by our Bellevue house one last time and I think things finally became real. We picked up our boat, said goodbye to Ed and Marcy our neighbors, met the people now living in our house, filled with gas, got some food, and turned on the gps. The kids were split between the two vehicles so we all could keep our sanity for this 24 hour drive. Matt drew the Jayen straw and I drew Dalan and Brilyn. A couple hours into the trip I realized how short the straw I drew really was. Brilyn was not feeling well and ended up puking. We luckily had a bucket in the car from Hunter's puking situation a week ago that was easily accessible. This continued every couple of hours with only two occasions causing an entire outfit change. But each time she used so much energy to puke that she fell asleep after. Thank goodness for technology to keep the rest of the crew happy. Grandma and Grandpa gave Dalan an MP3 player and headphones. After the MP3 ran out of battery, Dalan realized he could plug his headphones into the car and could watch movies without waking up Brilyn! This got us a few more hours!
A little after midnight I finally convinced Matt to stop for a little rest. He never intended on stopping, but I was beyond tired and needed to. I was able to find a Holiday Inn on the way and used our points to keep the cost low. This was my way of convincing him!! Our heads are going to hit the pillows and wake up in less time then we would all like but at least we will be somewhat ready to finish this drive.
Sunday, January 18, 2015
Heart Is Pulled In So Many Directions
Our last day with family and friends. After a night of saying goodbye to so many, I'm not sure I can do anymore today. I was so thankful to have the time with our family. The girls were there to wake Allissa for church. After church we all went to one of the only places that could handle twenty of us, Pizza Ranch! The food was good, the company was even better, but seeing all the kids play together in the basketball court was the best. How are we going to get this time back? Will they all remember each other? I know that some day we will be back in Nebraska but the time when they are little always goes too fast.
After eating we headed back to our temporary housing. Billy and Christine Fallon wanted a chance to say goodbye as well. It was so hard trying to split our time with everyone. With this being our last day in Nebraska there were only so many hours in the day. I'm grateful for every second with had with everyone. Saying goodbye and not knowing who or when we would see again broke my heart. I have loved the time we have had here. Nebraska will always be my home.
Saturday, January 17, 2015
Good 'Ole Goodbye Party
Our long time friends, Josh and Michelle Joslin, threw us a going away party at their house. I had been worried about this since the day Josh offered to host. I was never sure how many people would show up and how long any of them would stay. I didn't want their house to have a revolving door or them to go out of their way for any of it. They also just had a baby less than two months earlier. After convincing me that they weren't letting us do it anywhere else, we agreed and tried to help in whatever way possible.
I was so blown away by the amount of people who showed up. I feel loved and know that we will be missed! We wanted a way to see who was all there an a way to wish us off. After showing Matt the idea I had, he was able to draw a picture of our first home. Wow what an artist I am married to! Each of our guests were asked to put their thumb print at the top of the paper. The end result was supposed to look like Mr. Fredrickson's house from the movie "Up!" We had a few friends who tried to put their print in some funny places, so now I might have a little Photoshop work to do.
Josh and Michelle went out of their way making food, ordering cake, cleaning the house, getting tables and chairs, and so much more. I can't thank them enough for the opportunity to get together with the most amazing family and friends. Where are we going to be without all of you?
After most of the guests left a few of us got a game of tippy cup going. Since there were some not drinking, but we needed more players, water quickly became the drink of choice by many. We were even able to get Matt's dad and my dad in on the action! I've never seen either of them play tippy cup before but would love to see it again! I had the most incredible night. I don't want to leave! I am so lucky to have each and every one of these people in my lives. I know they will all still be there for us, but not having them physically near us is still hard!
Friday, January 16, 2015
Last Day At Bellevue Elementary
I don't know how life moved so fast. How did we get to this day? How did my baby turn 5 right in front of my eye? How did he turn old enough to start school? How did he develop into this amazing little boy?
Well I know the answer to the last question at least; with the help of the staff at Bellevue Elementary. Ms. Shank, Ms. Shelby, Ms. Schram, Ms. Potter, Ms. Sheri, Ms. Martha, and so many more. We have had the most amazing experience at this school. You have all made us feel like family. We looked forward to every day Jayen hopped on the bus. He was loved and taken care of when in your care and I never worried (ok only a little!).
Friday, January 9, 2015
Girls Night With The Boys
After a goodbye dinner with the Chitwoods and Lambrechts, Ms. Heather came over to our temporary housing to hang out with the kids. We love Ms. Heather and don't know what we are going to do without her! Mommy had made plans with Renee and the boys from dinner were trying to get dad out. Renee and I had dinner and drinks at one of her favorite places then decided to meet up with the boys. We learned what Dasboot is. The boys were a "few" boots in when we got there but we still capable of teaching us the rules; the toe of the boot always has to be facing out, if the drink splashes you in the face you buy the next boot, after a drink you have to flick the boot before passing it to the next person, the boot can not touch the table or you buy the next boot and whomever finishes the boot the person before them buys the next boot. After playing a couple rounds Renee was more than prepared to school the other kids around her. What a fantastic night with amazing friends.
Renee you are one of the most amazing friends I have ever met. You have always been there for me even when I couldn't be there for you. You keep me going and grounded when I don't always have the strength to continue. I am going to miss you more than you will ever know. I know that we will continue to talk but I'm going to miss our zoo trips and Monday night drinks and chats. I love you like a sister.
Thursday, January 8, 2015
This Goodbye Made It Real
I know we have done this one before, but this time it is extra hard. Dr. Toth you have been our light and savior when we needed guidance and comfort. You have always been open and honest with us but with the kindest touch. You truly love what you do and love who you do it for. We have seen the way you look at our children and wish nothing but the very best for all of them. We look at you and wonder why a total stranger; a military doctor who sees patients come and go at the flip of a coin took such an interest in our son. Why you gave us your everything?
1,766 pennies for each day you've been there! Can you believe we've been on this journey for that many days?
William Toth you have changed not only Jayen's life but mine. You will forever be in my heart! Keep in touch.
Saturday, January 3, 2015
373rd TRS Christmas Party
The kids spent the weekend at grandma and grandpa's house so mom and dad could go to daddy's work Christmas party. This is dad's fifth and final TRS work Christmas party which means that it was kind of his going away party too. He was presented with a really neat plaque with the Husker stadium on it.
Mark and Nikki Dorn
They have both been amazing leaders but most importantly amazing friends. We will miss them and their kids tremendously.
After the comedy club a bunch of us met up at a nearby bar. They have talked for years about doing a arm wrestling tournament and finally made it happen. Mark kicked everyone's butt but Matt and Evan were a good matchup.
With each and every day we are one step closer to saying goodbye to everyone and everything we know. I don't want any of this to end.
Friday, January 2, 2015
Food and Family
For Christmas Tom and Tanya gave us a gift certificate to our favorite restaurant Bonanza. They were hoping that we could all go to eat before we moved, but time was quickly ticking away. We were homeless now and didn't know where to go, so we went "home"! It worked out for everyone to get together tonight. Grandpa had an idea to go to laser tag before eating. What a great experience. We sent all the kids out for the first round. Jayen was given the hand gun since the other guns were so heavy. He smiled every second he had the gun in his hands. I was really worried he wasn't going to like the dark or the laser lights, but there wasn't a thing/second he didn't smile.
When the kids were done, it was the adults turn. I didn't really care if we went or not, but am so glad we did. It was so fun. I don't remember the last time I laughed like that. Each of the guns came with a gunfighter name. Tanya was Tank, Tom was Zeus, Allissa was Spike, Dad was Ranbo, Tyler was Jabba, Matt was Magic, Mom was Sarge, and I was Eagle. I'm thinking these sound like great names to put on the back on shirts; Christmas presents next year maybe?!
Time spent with family truly is worth every second!
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