Hiking with Theresa

Of course we had to take Aunt Theresa before she left! Everyone who comes here has to see the water-less waterfall! She didn't really want to do a whole lot of sight seeing, but this is one thing we couldn't let her leave without seeing. We packed our lunch, filled our water bottles, and headed out the door. 

This is exactly the reason why hiking the White Tanks is one of our favorite family activities. No TV, no Ipad, no distractions, just family. For some reason when we are here they are nicer to each other. I think we might need to camp out here/live here!

Early morning shopping

I didn't think this was gong to happen, but Theresa agreed to watch the kids so Matt and I could wake up (I guess you don't wake if you didn't go to sleep) early and stand in line. I am so sad I am not home to be doing this with my mom. Black Friday shopping was never about the shopping for me. It was the one day a year I got my mom to myself. I got to spend the day with her just talking, deliriously laughing, and enjoying each other. This year I had to spend it with Matt! I won't complain too much since I know how little time we actually get together. We weren't brave enough to try Wal-Mart but tried out the BX on base. The lines were plenty long, but nothing compared to what we heard happens other places. Everyone was very nice, no elbows thrown, it was like shopping in Yankton. The only thing missing was my mom. Maybe next year Matt will surprise me with tickets for my deer season (Black Friday)?

Happy Thanksgiving!

Thanksgivings in years past have been filled with food overfilling the tables and counter tops that they have to also be placed on top of the washer and dryer, family overfilling every table and chair, lines for the bathrooms, kids running everywhere, so much noise you can't hear the person sitting beside you. But this Thanksgiving was anything but. We are so thankful for the family we had near; Matt's sister Theresa was able to fly in from Guam and spend the holiday with us. She has a training scheduled in California and was able to extend her trip to spend a week with us. I'm so thankful she took the extra time. I'm thankful we had family near for Thanksgiving.
A local restaurant closed its doors to the public and opened them only to the military community. I'm humbled by their support. We were welcomed at the restaurant for lunch by so many people thanking Matt and Theresa for their service. Our meals were delicious and even included dessert.I can't wait to go back to this restaurant and support them.
When we got home Jayen and Brilyn went down for naps, Matt and Dalan went to Walmart to pick up some great black Friday deals, and I was busy preparing our feast for dinner.

Already?

Dalan came home from school with this letter today. I loved the letter. I love how he put so much effort into his arguments. I really thought I had a couple more years until I had to start buying these big gifts. Hope Santa's pockets are a little deeper than mine!

Loved

Beyond humbled right now! Today has not been a wonderful day here. After struggling with Jayen's teacher last year, kindergarten going to half days, Jayen's teacher taking an extended leave, and now finding out she just submitted her letter of resignation; I've been a blubbery mess of tears. Which of course didn't stop when I went to pick up the mail today. The most amazing thing happened to me. A beautiful orange envelope surrounded me and gave me the most profound hug. It w...as so unexpected! The sight of the return address alone took my breath away.
I've written about my friend Erin and her husband Tim on the blog before. Their sons were taken from them far too early. I can't imagine the pain and grief Erin and Tim are feeling right now. Yesterday was the one year anniversary of Henry gaining his wings and joining his brother and grandma. But they chose to make something of the grief. They chose to reach out to others. I'm so humbled as I was one that received on their behalf. I'm here wallowing in my pain but they are the ones comforting me. They are amazing people! I can't believe they took the time out for me. Erin and Tim donated to HopeKids Arizona for Jayen and I in honor of Henry. They also sent me a personal gift. How could they be so selfless? How could they take their grief and turn it into smiles? I'm so sad at our situation here, but have nothing to complain about in comparison. I'm forever grateful! Tim, Erin, and Henry you have touched my heart. I am now on A Monster's Mission to spread Henry's love to others.

We are nearing the start of our first annual Monster's Mission Twelve Days of Giving. Starting on Wednesday (the one...
Posted by A Monster's Mission on Monday, November 9, 2015

What did I do to deserve this? On our way to the park before dinner, I noticed a package by the front door. I just assumed it was stuff my sister-in-law was shipping to my house. She here for the week and bought everything she could think of to take back to Guam with her. I've been getting packages non-stop but none are for me. I set the package inside the garage and we went to the park. After dinner I got a text message reminding me to check outside before bed. I assumed Kerrie Mallory-Thompson put a burning bag of poo or something on my doorstep! But then realized she meant the package that was delivered. I'm loved and I don't know what I did to deserve it. Thank you for being my friend! What an amazing gift.

 

News

After stewing on it and a little help from my smarty pants friend, Kourtney, this is what we came up with.

Mr. Kerr,

 

Thank you for the email. I decided not to respond on the weekend so you could enjoy your days off.

I can understand your concerns about the distractions in the classroom, but would like to address them. I feel that without the opportunity to observe Jayen's whole day, future and repeated observations would be necessary.

I feel strongly that it would be better to have one day with minimal distraction rather than multiple days. Likewise, without observing from start to finish, I do not feel I am able to give accurate input on successfully incorporating and utilizing Jayen's communication device.

I can also understand your administrative staffing concern, but would like to offer a suggestion here as well. Would there be another adult who could accompany me some or part of the time- a counselor or psychologist?

I would like to plan on being present for the entirety of one full 2.75 hour day for Jayen. If my presence is a distraction, I am more than willing to take that into consideration and make a decision that is best for the classroom and school. How do you address this distraction when volunteers are in the classroom? I would love to follow those best practices to ensure I create as minimal of a distraction as possible.

 

 

I was bracing for the response, but wasn't quite prepared for what I received. I have been saying this was going to happen for a very long time now.

Ms. Hochstein,

We will work out a whole day schedule​, I just got news today that Ms. Van Pelt has submitted a letter of resignation so I will need a teacher in Kinder the rest of the year. district is looking into that and so are we. I am not sure you will get much out of observing a substitute. You are more than welcome to come in any day next week. Let me know!

Thanks,

Mr. Kerr

 

 

I don't even know what to do anymore. I can't take this. How am I supposed to keep fighting? This fight is overwhelming. I can't let Jayen down and I can't let him continue to fall through their cracks. But I'm so tired of fighting.

 

 

What is there to hide?

I finally received a response from the principal about visiting Jayen's school. I'm at a loss at to what I should respond. I would like to be there for the whole day (as their day is only 2 1/2 hours long) and can't always get someone to watch Brilyn so I can go in. Yes, I feel two extra adults in the classroom would be distracting, especially if I have a chaperon by my side the entire time. I was never chaperoned in Nebraska. The teacher was in the classroom to make sure I was never doing anything she didn't approve of. It was such an open door policy. I want that back. I want to be able to have an open and trusting relationship with Jayen's teachers. Why does it feel like they have so much to hide?

Hey Ms. Hochstein,
When we have visitors to the classroom, our procedure is to make sure the classroom environment has as few disruptions as possible. There is no training but with visitors to the class are normally accompanied by an administrator. Thus the one hour limit is for admin! I do not mind if you are in for the whole time but I think that Jayen would be disrupted by your presence that makes it tough on the teacher. What do you think?

Mr. Kerr

Awareness and Hope

Today marks one year and five days my son has been seizure free. This is the longest he has ever gone without a seizure but with each day he is one day closer to his next. We don't know when the next one will strike or what our options will be when it does. We are desperate for more research for better medications, which could include cannabis. We are desperate for more awareness and funding for epilepsy! This is happening in Omaha, Nebraska tonight! I love what my friends have accomplished! Keep spreading awareness! Keep spreading hope!

Light it up purple!! Thank you Woodmen Tower for acknowledging the need to spread awareness for epilepsy!! Becky Budden, look what YOU made happen!!
Posted by Shelley Kimnach Gillen on Saturday, November 21, 2015

I just want to go observe!

Does this seem fishy to anyone else? Waiting for the response and not sure what else I need to say.


Thu, Nov 19, 2015
Mr. Kerr,

My son, Jayen Hochstein, is in Ms. VanPelt's kindergarten class. I was wondering if I could schedule a time to come in an observe the classroom. I would love to be able to offer some assistance and guidance on ways to use Jayen's communication device. There have been many times when the device comes home fully charged leading me to assume it isn't being utilized. I think it can be such a great tool to help facilitate learning and show Jayen's understanding of concepts. As a teacher, I often struggled when a student brought in their communication device. Now as a parent of a child with a device I've learned a few things that I would love to pass along. My husband is able to take some time off the week after Thanksgiving to be able to watch our youngest. Is there a day that week that I could come in and observe?
Thanks
Nicole Hochstein

Fri, Nov 20, 2015
Hi Ms. Hochstein,
How about Wednesday the 2/12 at 9:30. If you would like to show the teacher about the communication device then we could do that on a Monday (probably at Sonoran Heights). During the observation it is just that - we observe for an hour.
Let me know if this works,
Mr. Kerr

MY RESPONSE
Mr. Kerr,
Wednesday, December 2 will work for me. I would really love to see Jayen's full day. I would like to observe from drop off to pick up. If training needs to occur we can discuss dates for that at another time. Since Kindergarten is not full day, this would not put me anywhere near the five hour requirement for fingerprinting. However, if that is something you would like I can attempt to complete that task before the date listed. I have my teaching license in the state of Nebraska for both elementary and special education but do not have them on file with the state of Arizona as I am not able teach due to daycare issues for my youngest. I would really love to see the ins and outs of my son's education at Rancho Gabriela and hope that we can facilitate open communication to make his educational experience exceptional.


I understand safeguarding the kids and making sure you are not letting strangers into the building, but also only allowing me only an hour of observation time is not appropriate.

Follow-up with our epileptologist

We had another meeting with Dr. Jarrar today. I love how she remembers us even though we haven't seen her in six months. She told us she just saw Dr. Frost a couple months ago and he asked about us. That made me smile! The grumpy old man really did like us! We miss him and all our friends on the fourth floor. We heard Ms. Tina is back too! I think we need to request a visit to go up there and see everyone! They really did become family.
Dr. Jarrar didn't have a lot to say. She was excited about our year milestone but did realize as well that we are approaching our previous maximum seizure free days. We were hoping to maybe start weaning down some of the medications, but Dr. Jarrar wanted to wait another six months before we do anything. I'm a little disappointed, but a little relieved as well. It is always such a scary thing to change anything that is going well, but I want to reduce the side effects as much as possible. I want to meet Jayen for Jayen and not the one complicated by side effects. For now we will continue to cross our fingers, toes, eyes, legs, arms, ankles, knees, and anything else that will give us more seizure free days.

Cautious Celebration

Today marks another milestone in Jayen's life; but we've marked this milestone before. Why are we celebrating again. After your first birthday you don't have another first birthday, you move on to your second. I don't want to keep celebrating this milestone. But I'm one of the lucky ones that gets to celebrate it. I shouldn't be complaining about it. But in my heart I know we will be celebrating this same milestone again some day, if we are lucky!
Today marks one year of seizure freedom. One year of not having to use the Diastat. One year of constantly looking over our shoulders. One year of listening at every sound he makes and diagnosing every movement to make sure we aren't missing anything. One year of worry and wonder when the next one will cut that time short. We have eerily been here before. The last time was one year and four days. 369 until all our worries and struggles began again. Each time they come back they seem to be worse than the last. I'm not sure I am strong enough to handle that again. But Jayen is the one who has to go through it. Jayen's body is the one who takes the brunt of it. Why am I complaining? His seizure affect the rest of us too. The emotional toll it takes on myself as his mom is unmentionable. As a brother and sister it takes time away from them that we have to give to Jayen. But they are both incredibly strong. And even more so incredibly empathetic towards others. Watching the two of them interact with other kids melts my heart. I can't thank God enough for giving them all to me. I know I am truly blessed! I can't take these things away and I can't make him better. It is such a crap shoot how long medicine will keep the seizures away. For now I will continue to pray that Jayen's seizures "go away and don't come BACK!"

 

To celebrate the day, we had a purple day. My friend Kerrie helped me design and printed this shirt for Jayen. I'm so happy to have a way to help him celebrate and share his joy with others. We had purple pop tarts and purple juice for breakfast (I don't typically buy pop tarts, but the kids suckered me into it since they were purple. Once in a while, I'm the cool mom!). For lunch we made purple cabbage chicken salads, purple Jell-O, and purple juice again. Daddy was still in Nebraska but was coming home today. We made purple cupcakes to share with him after picking him up from the airport. We've missed him so much! Mommy really needed a few hugs from him the last couple of days. After a great reunion and many, many hugs later we were able to celebrate with daddy at a restaurant. Mommy really didn't want to cook anymore anyway!

 

I'm grateful for today and this amazing milestone. But of course, I'm cautiously celebrating waiting for the next seizure to strike my baby helpless. I don't think I will ever stop worrying when the next one will come.

Hard Decisions

Today has just been one of those days. I'm still so torn about what to do for the kids and their education. A friend reminded me that now is the time to start filling out applications for the next school year. I think this was a little too much for me today. The school I think would be best for him is nearly 35 miles from my house. If I were commit to that, I could potentially be driving almost three hours a day, five days a week to get him to and from school. Traffic would be unbearable most days! I still have to consider the impact this change would make on the rest of my family. Would I be able to get Dalan to school or pick him up? Would I have to put him in before or after school care? Would we be able to afford that care? Would Brilyn be able to go to the same preschool she is at? I love her teacher and really don't want to take that away from her.
I hate what this move has taken away from us. I know it has given us a lot too and I'm not trying to downplay that. My heart swelled every time I heard Dalan come home and tell me he saw Jayen at school and gave him a hug. I loved having one school to support for all their fundraisers. I loved being able to get to go to one concert or award ceremony and be there for all my kids. This past Veteran's Day we had to choose which school to be at. I HATE that I won't get that here. Or ever now! By the time we get back to Nebraska, Dalan will be in middle school and won't be in the same building as Jayen and Brilyn. My kids will never go to the same school together.
I'm so lost as to what is best for ALL of my family. I've been crying about what I'm currently doing to my kids by keeping them here, and I'm crying at what decisions I will have to make in the very near future.

Happy Veteran's Day

We would love to wish a happy Veteran's day to all the men and women who signed away their freedom so others could have theirs and especially our favorite hero!

sky kids

We've been waiting for the surprise and it is finally here! I knew when I found out about the Sky Kid event that it would be perfect for Jayen. The application stated the sky kid had to be at least six years old. Well, good thing someone just turned six three days ago! How could that have been any more perfect? I filled out the application not sure if he would actually get chosen. When the email came back a few weeks later with our parking pass and flight time, I couldn't hold back my excitement! Today is the day my son gets the chance to actually be a pilot. I know in real life, because of his diagnoses, that he won't get the chance to make it his career. But for today, he get to be what he wants!

 

 

 

We arrived a few hours before our flight time so Jayen could adjust to the sights and sounds before it was his turn! It also gave us the opportunity to see all the great static displays.



 

Their smiles were amazing. Jayen was in awe of every plane, helicopter, fire truck and police car he came in contact with. He was so quiet but you could see he was just taking in every sight. We were eventually escorted to the hangar where the firefighters cooked us hotdogs and hamburgers. There were face painters, a princess, dogs, trick yoyo shows, and so much more. We had a blast just hanging out in the hangar.

 

When they came to get us, we almost weren't ready for them! But who could possibly say wait a minute. Daddy suggested mommy get to go on the airplane with Jayen since he gets to do fun things with him other times. I was so thankful he let me have this opportunity with him. Jayen loves his daddy and they have so many special connections. I'm excited this is one I get! Jayen got to bring along a friend on the ride as well. What better friend than your older brother? Dalan was pretty excited he got to go on the plane as well! Brilyn was not excited about having to stay on the ground with daddy.

Jayen begged for the headset I was worried he wasn't going to wear them so I was talking them up long before he got on the plane. Well, that long before was obviously too long before. He was fixated on getting them on immediately.

The pilot, Mr. Travis, kept turning the plane to the right so Jayen could see the ground out of his window. I could see we kept getting of course, but I'm so thankful for his intuition and making this the most incredible experience ever!

Mr. Travis presented Jayen with a certificate stating he was officially a Sky Kid pilot!

He was also presented with a set of pilot wings! I can't believe how they went above and beyond to make the such a special day for Jayen and a hundred plus other kids. This is definitely one of the most memorable days of my life and hopefully Jayen's.

 

After his flight Jayen was welcomed back to the ground by cheerleaders cheering for him and the crowd clapping!

 

I can't get over his smile! I think he had an amazing day. We can't thank the pilot, Mr. Travis, enough for what he did for us. He not only donated his time, but his plane and the gas. Jayen sat in the front and didn't take his hands of the yoke at all. He knew he was a big deal! He keeps showing me the ASL sign for airplane then signing for more. I'm forever grateful for the gift my son was given today!