Another Check off the Nebraska Bucketlist!

We have been waiting for daddy to go to the zoo with us to do the Skyfari and singray touch tank. Mommy has been telling the kids for a VERY long time that we should wait for dad. Well, we finally got daddy to the zoo! It was worth waiting for. The skyfari was amazing! I wish it would go around the whole zoo! Jayen's favorite animal is the giraffe and he was so excited that he got to see them from up above! I loved his smile. We spent the whole day at the zoo seeing all the new exhibits, our favorite exhibits and saying goodbye to them all. I fully intent to take the kids again while Matt is gone, but it really does change things when he is not around.

 

 

 

Goodbye Lake!

Another great family day! We had a birthday party for Dalan and his classmates today at Halleck Park. It was very hot and humid! Daddy decided the best way to cool off was to take the boat out. We knew this would be our last chance to take it out before daddy leaves. All our worries and cares seem to float away when we are out here. It was pretty hard to say goodbye. We were able to convince the kids to all take one more ride on the tube. Dalan refused so we let Brilyn show off! She was giggly and smiley until the wake started making her bounce. Jayen was all ready to go after she got off! He couldn't wait. I love how he puts his hands beside him and relaxes like he is cool! He has really grown to love the water. Dalan finally agreed to get on. After a few minutes he relaxed and started doing tricks. He was going from a sitting position to a laying position and back. We made a big deal about it to get him excited. Before it was time to load up, I asked Dalan to stand up in the tube. He looked at me like I was crazy, but then tried it. He was so proud of himself. I was pretty proud of him too. Well Lake Manawa, it has been fun. We will be back again some day!

 

The best family day of my life!

On July 31st I saw a post on facebook that said Vala's Pumpkin Patch was opening September 19th. I was immediately so excited but very quickly saddened. Matt starts school on September 14th. Was he really going to miss the entire season? Vala's is a very special place for our family. We have made so many special memories at the farm. All of our kids have been visiting since they were infants! I wanted Matt to be there with us this year. I want him to be in our family pictures there. I wanted to not have him miss out on our most important family traditions. So, I got this crazy idea to send them a message. I knew it was such a long shot. In fact, I more than assumed it wouldn't happen at all. But it was worth a try.

 

Dear Vala Family,

I would love to start by saying how much my family LOVES Vala's Pumpkin Patch. We buy your season pass every year and visit as often as possible. We have introduced you to our families and they now drive three hours every year to join us at Vala's. Vala's pumpkin patch has really become a near and dear family tradition for my husband and our three children. Our son, Jayen, has struggled with his health since he was four months old. We often say we don't know what he loves. Every year for his birthday we struggle finding gifts that we think would be perfect for him. We know one place that always makes him light up...Yep, Vala's! We have rented your campfire spaces and had his second, third and fourth birthday there. This year however, we are not sure that will be possible. Jayen had brain surgery in March but despite removing four parts of his brain he is still unable to control his seizures. To add to it, Jayen dad is in the Air Force and will be deploying September 12th. I am begging for the opportunity to visit Vala’s before my husband deploys, before our family has to move to Arizona, and before Jayen’s health gets worse. My family would be forever grateful!

Sincerely, Nicole Hochstein

 

I sent the message and wasn't sure I would ever receive a response. BUT about two weeks later I got the most incredible response. Somehow all the stars in the universe aligned! Any other year, this would not have been possible, but they were hosting a pumpkin farm convention this year. There were going to be a few attractions and activities, but they didn't want it to be a disappointment at all. I promise, no visit to Vala's would ever be a disappointment! We were invited to visit the farm during the convention. They were touched by my letter and were happy to be such a special part of our family's memories and traditions. We were honored they were allowing us to be part of their special convention. My heart melted! I couldn't wait to share the news with the kids, but I decided to keep it a secret!

We took Dalan out of school at 2:30 and met with Kirsten at the pumpkin patch. She was so welcoming and sweet. They offered us kettle corn, baked us a pie in the new pie barn that morning, made a fire for us to cook hotdogs and smores, and opened the entire farm to us. It was like Christmas for all of us! 

 

Our first stop was a perfect family photo with the How Tall This Fall sign. There were no lines anywhere! The farm was at our disposal. What should we do? Where should we go? We started by heading toward the big slide! After a failed attempt at sliding down, we noticed the new ball area. This is so neat! I think this was probably Jayen's favorite part! There was basketball, baseball, football, soccer, ladder golf, cornhole, and the strong man game with a pumpkin twist. We probably spent the most time here. Mommy was reminding everyone that the dog show started at 5 and we had a lot of farm to cover yet.   

 

 

We stopped at a few more places on the way to the dog show. We were waiting for the train when a group of people asked us, "Are you the family?" I had no idea what to respond. Then she asked if we were moving to Arizona. She worked at a pumpkin farm in Arizona and wanted to make sure she met us to invite us to see them after we move. How exciting! We are going to miss Vala's but were excited to know there was something for us after the move. But still, how did they know about us moving? We found out that the Vala family shared our letter with the people putting on the convention. They wanted to make sure it was ok that we crashed their party! Apparently our letter touched them as well. Our letter was then read to all the convention visitors on their way to the farm. We were "The family"!

 

We were able to ride the train, watch the dog show, throw frisbees to the dog, ride the pedal cars and play in the corn! It isn't Vala's unless we come home with corn in our pockets!

 

We were treated with such kindness from every person there. We felt like royalty! All of us were spoiled rotten. I lost it and couldn't stop crying when we were given a Vala's ornament. I might have to move the angel this year! Not sure how the bulb will fit on the top, but I'm going to cherish that ornament for the rest of my life.

 

When we were ready, the fire was started for us. We had our own private fire tucked away from everything. We had hotdogs and smores, but couldn't leave Vala's without a frito pie. We stuck a can of chili in the fire and made our own! I know I've said it before, but this was amazing! We had some visitors stop by while we were by the fire. The kids were all asked to help out the sheriff and watch for bad guys. They were all given badges and swore to serve and protect. The guy who does the pig races stopped too. I wish I could remember their names! He said we will have to stop to get a pig nose to send to daddy when he is gone. Can't wait to send him a picture of dad in his uniform wearing a pig nose!

 

It might not have been the best of ideas, but after we ate we finished up the night on the pillows. Dalan was so excited to get to jump on the big kid pillow! Daddy was excited to bounce as high as he could and not bounce off any kids other than his own!

 

We truly can't thank the entire Vala's family for allowing us this amazing opportunity! I'm so grateful for the wonderful family memories we have made over the years. You will always hold such a special place in our hearts. Arizona will have us for a little bit, but you will have us FOREVER!

A rare visit from mommy!

Daddy took the afternoon off to stretch carpets in the house, so mommy left Brilyn at the house to nap while Jayen went to therapy. Since I didn't have any extra hands with me, I was able to go in the gym and watch. I haven't been back to see Jayen work in a long, long time. I was a little worried he wouldn't work with me there. I obviously was not a distraction! I love the ideas and activities they were working on. The first one I saw Jayen had to open a button package to get out two pegs. The pegs were pounded into a picture on foam board similar to a light bright. Jayen loves working with tools so this hammer activity was a perfect for him.

 

 

After finishing his hammer activity, Jayen worked on his jumping goals. The super skipper was such a great and fun activity as well. The poles spun around at a very slow pace and Jayen had to jump over them as they came closer. This toy had such versatility too. You could use just one pole or two, you can turn the head of it upside down so the jumps are 6 inches high, and it has multiple speeds. We need to get one of these at home!

 

After playing with all his tools at therapy, Jayen was ready to put on his tool belt and help daddy at home. He didn't even want to stay for his free time at therapy. He really has become such a daddy's boy and big helper. Guess I better start making that honey do list a little longer!

Walk day is finally here!

Today is the day! The Nebraska Epilepsy Walk is finally here. Brilyn, grandpa, and many others started the day out with a little face painting. We arrived early enough to pick up our registration packets and check out the tables.

 

What a turnout! 68 family and friends who love and support Jayen! We are so honored and blessed to have these people in our lives. I don't know where I would be without you all. My heart swelled two sizes!

The walk wasn't quite the 5K we expected it to be, but I think we all broke a sweat; at least trying to keep up with the kids who lapped us!

 

 

After the walk, Mom had to school everyone on how to do the Charlie Brown! The DJ pointed her out and made everyone watch. After the Charlie Brown mom showed her skills wobbling too. I can't  believe I saw my mom do this.

 

 

Everyone was invited to the house for a luncheon after the walk. We posed for a family picture with our new Jayen rock. We rock purple for Jayen year round now!

 

We had purple coleslaw salad, purple cauliflower, purple jello, and purple cupcakes with purple ribbons.

 

Because our family and friends were in town, we decided to have Dalan's birthday party too. He didn't mind sharing the day with Jayen.

 

What a super special day this was. A GIGANTIC hug and thank you for everyone who came and supported Jayen and our family!



Nebraksa Epilepsy Walk

I cannot believe the support we are receiving for the walk this Saturday. We have currently raised $724 and have over 26 walkers. I am positive there will be more! If you would like to join us you can register at the link below.

Nebraska Epilepsy Walk - Jayen's Journey


I can't wait for Jayen to see everyone there supporting him. I'm crying just thinking about it, so be prepared the tears will flow on Saturday!

Happy Last First Day of Preschool!

 Jayen was so excited for school today. Might have been most excited about his new backpack. We made the mistake of showing it to him last night. He kept getting out of bed asking for his backpack. It was cute and annoying at the same time!  Can't believe how big he is getting!

 

Sister was a little disappointed she couldn't join them. She had to grab her backpack and pose with them. After school we had Ms. Bedell and a representative from Talk to Me Technologies come and show up options for a communication device for Jayen. I'm so excited to get the ball rolling on this so Jayen can have a device before we move. I hope we can keep this as similar to what he is used to. He struggles learning new tasks the way it is, that this would be one giant hurdle to overcome if is wasn't similar. I think we are going to go with the Ipad mini. I really think the smaller size will make it easier for Jayen to take it with him everyone. I have always struggled with teaching him how to use a communication device if he doesn't always have the device with him. Hopefully this will make that possible!

You might be new, but I'm not!

Tonight was back to school night for the boys. We had to say goodbye to our favorite teacher, Ms. Shank at the end of summer. She has taken a new position with the district and won't be in Jayen's classroom this year. We are so sad!!!!! Jayen has a new teacher Ms. Potter. Ms. Potter is a brand new teacher and I'm sure Jayen will teach her ALOT! He walked into the room like he owned the place. I have no fear for his first day of school tomorrow. Hopefully he lets Ms. Potter teach him more than he teaches her. Good Luck Ms. Potter!

Such a rollercoaster ride!

Woke up at grandma and grandpa's house this morning and Jayen had a seizure. This one really worried me. I couldn't sleep so I got out of bed and went to shower. Jayen woke up shortly after and was playing with Matt but then decided to go wake grandpa (or just steal his money from his money jar beside his bed)! Grandma and grandpa said he was playing with them and they didn't notice anything "off" with him. Matt said he was listening to Jayen's footsteps and couldn't hear them anymore so he ran upstairs to check on him. What he found is what worries me. Jayen was at the top of the steps seizing. What if he was on the steps? What if he fell down? What if we all assumed he was with the other? This is such a rollercoaster ride of emotions with this kid. I feel like I live in fear of when something HORRIBLE is going to happen. Waiting patiently for Dr. Frost's call with the next step in this ride.

A wagon and a giggle!

When we asked Dr. Frost to grand marshall our stroll the other day he requested a wagon. We asked Zaundra to order us a wagon so we could get Dr. Frost to sit in it! We decorated it and had it ready for him when he got there. Zaundra and Nadine had to take a turn first!

 

 

Dr. Frost wasn't too sure about getting in the wagon and asked Jayen if he could join him. We should have talked to Jayen about it ahead of time because he told him "NO!" We settled for another tattoo instead.

MRI results were not in yet, so Dr. Frost sent us on our way and said he would call us when he figures something out.

After getting our discharge papers we were able to meet up with Sydney and her family at the hotel! I'd take one more chance of seeing them anytime! They were trying to surprise us with this amazing Spider-Man pajama set. Sydney saw it at the Mall of America and immediately thought of Jayen. How sweet is she?

 

We were all headed in the same direction so we kept texting the entire way home to see who was where. Can't believe they live only a few miles from my hometown. That only means we will have to get together every chance we can! Patiently waiting until we can get together again. And patiently waiting for Dr. Frost's call with results and plan of action!

Goodbye and MRI

We had to tell our friend Sydney goodbye today. She was going down for a procedure then would be leaving after that. We are so sad they won't be here anymore. We love Sydney, Chad, and Jenny! It truly was a gift from God to have them here with us. Keep in touch guys!

 

Jayen with Sydney and Ariat!

 

Jayen was scheduled for his MRI at 3 today, so we had most of the day to sit around and wait. We were able to have Zaundra convince Dr. Frost to write the orders and the EEG technicians to take off the wires a little early so Jayen could get a bath and play in the garden and zone before he had to go down. This also helped keep his hands away from any food since he was on NPO orders.

 

First bath in a week. We have this down! I'm pretty sure there wasn't any glue left on that head when we were done. The marker on the other hand was still there! As soon as his clothes were back on we were out the door! We love the roof top garden!

 

We had to check back in around noon to get medicine but then we able to leave and play again. But first a chair race vs Linda and Nadine. Man we love these nurses! I don't know any other hospital we've been to where we feel like family! I don't wish for another stay, but we are never disappointed to see our friends again!

 

After a trip to The Zone, it was time to head down for the MRI. After a screaming match trying to get the IV, we headed down the children's radiology. Their anesthesiologist team was in charge of sedation, but United was in charge of the MRI itself. So another trip down some windy hallways to our destination.  

 

I don't know that I will ever get used to seeing my baby go from screaming to his eyes rolling to the back of his head.

 

MRI took a little longer than thought, but we passed the time with a little Phase 10 again. Daddy of course, kicked mommy's butt. We were scared we were going to miss Jayen coming out of the MRI so we went back to Children's and waited there. When he finally came back mommy wanted to pick him up and hold him tight.

 

The rest of the night we just all snuggled and enjoyed our evening together. We went back to the room and watched a movie. It was all the snuggles mommy needed or could get. Hopefully the MRI results are written up and Dr. Frost can see them tomorrow so we can get out of here.

Minnesota Stroll for Epilepsy right here on the unit!

We found out a couple days ago that the Minnesota Epilepsy Foundation was having their annual stroll for epilepsy today. For some reason this mommy thought it would be a great idea to have our own little stroll right here on fifth floor! I contacted someone from the foundation and asked if they could help us in any way. They came through and helped make the event so much fun. Mr. Tom and Ms. Vicky pulled some strings and had lots of fun activities and snacks!

 

 

Jayen was in love with the puppy. He giving Twister hugs and kisses. He reminded us a lot of our dog Josie. We miss her!

 

Someone brought along Spiderman for a visit. Jayen had to take a little bit to warm up to him! This was as close as he would get.

 

Team Jayen! We wear purple for our little miracle!

 

What a spectacular event. I hope they continue this annually. And someone has to get Dr. Frost in that wagon and get pictures!!!!

 

At the end of the event, daddy was giving free rides to Jayen and his new friend Ariat. They were belly laughing and having the best time!

 

After a day of seeing Spiderman around and everyone playing with him, Jayen finally gave him a chance. Now they are best friends and I'm scared we are leaving with him! He might have to sit in Dalan's carseat.

 

We were able to get volunteers to watch Jayen and his other new friend Sydney. Chad and Jenny Kapla and Matt and I ran to Tom Reid's for a quick bite to eat and a well deserved drink! I am so glad they were here. We know how emotionally draining being here can be, but having them around really made it easier. They kids did great with the volunteers. After getting back we got them ready for bed then met up again in the commons area for a game of Phase 10. I hope we continue to keep in touch. So crazy they live so close and we met here first. You guys are amazing. Take good care of eachother. See you around!