Wake Up for Landon

09/13/2023

Managing Narcolepsy can be a tough battle, and we have had so many ups and downs throughout the years even before we knew what it was!
I have always told Landon he knows his body better than anyone, and I want him to be able to speak on it and have a majority say in what his plan is for managing his diagnosis. He has always done such a wonderful job, been very responsible, very vulnerable and honest and he continues to do so.
We are at a good point with this, he is more active than we could have ever dreamed. He knows his limits, he still likes to test them, but he also knows his best ways to get restorative rest and wellness. We are still learning as he gets older, and as positive as we try to be there are still days that just plain suck. The good outweighs the bad at this point though. I could only have ever wished for such great things especially looking at all he has gone through.

Please keep your head up, advocate for your kids, and always know there are people in your corner.
💙💙💙

12/08/2022

Landon is the Student of the Week in the QC Times
https://qctimes.com/community/bettendorf/bettendorf-news-student-of-the-week-landon-torres/article_99b426a0-1ebc-5696-9985-c3180bdbdc32.html

I love his answers to the questions, short and sweet and no crap.

I am beyond proud of the boy, and I always tell him his hard work will pay off. This is just the reminder he needs ♥️

I also have not mentioned he made a MOEMS competition team, it is Math Olympiads for Elementary and Middle School. This boy is the most hardworking and dedicated kid I have known, he pushes through obstacles, and his attitude and spirit through it all is infectious.

Name: Landon Torres

10/25/2022

It has been a few months since a check-in, and in my eyes that is a good thing! We are finally managing this thing called Narcolepsy, and Landon is becoming a pretty great kid to notice when he is struggling more or needs to just relax for a little bit. I am so proud of the awareness he has of his body and his ability to speak up when he feels like something is off.
For now, we are able to do virtual visits with the doctors unless things change. We have checkups every couple of months, and we continue to have contact through email and calls in between.
Remember, Narcolepsy isn't curable but it is manageable with the right tools and support system.

Landon is excelling at school, home, and extracurriculars. He finished an undefeated soccer season, and now is playing basketball and just recently made the travel team for that as well. He has taken up the violin too!

Narcolepsy Awareness month is coming up soon, so I will be trying to post some things that I hope you can share and spread awareness of this neurological disorder.

09/27/2022

Happy 10th Birthday to Landon (yesterday)!
Today he had a check in with the doctor, and things are finally to a good spot where we are elongating the periods in between appointments!

08/21/2022

I took a webinar class from Wake Up Narcolepsy about 2 weeks ago and shot them an email afterwards to try to see what I can do to help with a school system that will not approve a 504 plan.....Today I received a package with a letter and contact information for an individual PLUS pamphlets to give to ALL staff and personnel Landon will be in contact with.

I was shocked and so in awe of the time and energy they put into a family in Iowa to help in whatever way they possibly could.

Please stay informed, educate yourself, and stay kind.

07/30/2022

Landon participated in the Arconic Jr. Bix 7 last night. This is an annual race the day before the iconic Bix7 road race in our home town of Davenport, Ia. Landon's age division did a little over 7/10 of a mile, and he ran strong!
He loves pushing himself in all things, and this was another testament of not putting limits on his abilities and just adapting to his needs. He is still sleeping and we cut the after party short last night, he is exhausted and he also had his heart rate get a little too fast for our liking that took a few minutes to correct itself (it happens, and we know and prepare as best we can for this) Overall, he kicked butt and he did what he set out to do.
I am always more than proud of him in all things.
He also was extremely excited because his two sisters joined in on the fun this year! Landon has participated since he was 10 months old, so it definitely is going to be a family tradition!
Quad-City Times

07/21/2022

If you have time to share, give, or send love,good vibes, and prayers to the many patients and doctors/staff please do!
Landon has been a patient at the University of Iowa since before he was even 1. A Neurologist at the U of I actually is the reason he was sent to the Mayo clinic and changed his whole life. He has done things from testing, surgeries, overnight studies, to even being in isolation for a week, and each time they made it as special as it could be. He still has certain things gifted to him during his trips there.

Can you help bring joy to our patients in July? We’re currently running low on gifts and other items our Child Life team uses year-round to promote normalcy, socialization, and expression during hospitalization. These items are also used to celebrate developmental milestones, birthdays, holidays, and end of treatment.

We’re hoping to replenish these items, which have been carefully selected for each age group.

To donate an item, please use our Amazon Wish List: http://spr.ly/6184zsHx6

Thank you in advance! 💛

06/14/2022

It has been a busy few weeks for us, as I am sure it has been for many of you as well!
A few updates:
*Landon has adjusted well to his medications, and has had a few more adjustments made that have helped even more than we could have expected.
*Landon has finished 3rd grade, and he is testing well above his grade level and age level both. The school has still denied his 504 plan needs, and I will be building a stronger case to present them at the beginning of the next school year, as he should be able to have this plan in order to support him on the days he may need it just like any other medical condition that can affect daily lives.
*Landon attended a basketball camp, and on the last day he was a finalist for both hot shots and for free throws. His hard work is amazing to see. He never lets things that could be a reason to quit alter his end goal, he just finds his own ways through or around them.
*Lastly, insurance has officially denied the testing that was done. It was a blow to get the final decision, however I know that the right decision was made by the doctors and our family to have Landon do this testing. It allowed us to know for certain about his medication without having to test out a bunch of others and potentially having bad side effects. We have had many setbacks in his treatment and the insurance side of things has been tricky for many years as most of you know (thank you to those who supported us with his benefit a few years ago), but it will never stop us from doing what is right and best for his health. We will find a way.
* Insurance also hassled us about his medication, and after a month of phone calls and some back and forth, I was able to get what he needed approved for the moment. I take it month by month, and will continue to push.

We hope you are having a fun filled summer so far, staying active and healthy, and pushing through.

05/12/2022

We are so glad that Landon went through with the testing two weeks ago. From this test we concluded that the medication route we are on for him is correct, just needed some adjusting. This means we don't have to spend weeks and possibly months trying to find the right medication and go through all the side effects that come with.

Landon says he is feeling much better in the mornings, more productive and alert than he was previously.

05/03/2022

While we were at Rochester we tried out all new food places, besides breakfast at McDonalds since it is right next to the hotel we stay at. We do not typically eat out often and try to avoid fast food, so this was a nice change.
Landon got to choose Toppers Pizza, I chose a bar and grill called Beetles, and Tevin chose Smoak which is a modern BBQ spot. Landon is a big fan of Cheeseburgers everywhere we go!

04/28/2022

Sunday we spent a day doing things together. I told everyone I wanted to try all new things this trip, and we made sure that happened for Landon.
After eating at the Mcdonalds next to our hotel we went to Oxbow Park & Zollman Zoo which was about 20 minutes away. This was a fun trip when the paved road just cut off into dirt without much warning. When we got there we were pleasantly surprised at the area and the amount of animals. Black Bears, Eagles, Snowy Owls, Turtles, Deer, etc.
Landon is a nature lover and animal lover so he took the time and read the animals stories and enjoyed spending time just near them.
If you are ever taking a trip near Rochester, I would suggest to stop there.

04/28/2022

This past Saturday when we got into Minnesota the kids chanted PIZZA (and got what they wanted) and we played some games including Yahtzee in the hotel before bedtime.
There is a pizza chain called Toppers that is not located in Iowa, so we enjoyed way too much of the cheesy mess.