Wednesday, September 16, 2020

Registration and Sponsorship is still OPEN!

 Registration is still open for our 7th annual Little Giants Farm Run. The farm run is a great way to get outside and spend a fun-filled day with family and friends. Proceeds go towards The Little Giants Foundation to raise money for SIOD awareness and help fund research. Schimke Immuno Osseous Dysplasia is a rare, genetic, life-limiting disease that causes great suffering to the children who have it. Symptoms include vascular and kidney disease, a weakened immune system, and short stature caused by problems with skeletal growth.

 
The run is a family-friendly VIRTUAL event this year including a 5k run,and a one and a half-mile walk.  This year, the event will take place on your terms on Sunday, October 4th  with swag pick up at 13714 S 84th St, Papillion, NE, 68046 on Saturday, October 3rd where CDC guidelines for Sarpy County will be followed.  * This location will also have a Pumpkin Festival for you to purchase your seasonal pumpkins with a portion of proceeds going to LGF!  

Please kindly donate an additional $10 to your registration if you would like or need your swag bag sent via snail mail.

This run is a great activity to bring families and friends with safe COVID19 practices in place together for a good cause. Little Giants Foundation was created to become a voice for those with SIOD and other rare forms of dwarfism. Please click the link below to register for our run and help raise funds while having a great time!

https://ultrasignup.com/register.aspx?did=76041

Sponsorship levels are still available as well.  Please message littlegiantsfoundation@gmail.com ASAP for the form as these are due the 21st of September.

Wednesday, September 2, 2020

Wife,Mom, Advocate

 

Koesters is a health and wellness business owner for It Works Global, Executive Director of the Little Giants Foundation on behalf of her eldest daughter, and she enjoys weight lifting, running and adventuring with her two daughters in her spare time. She also devotes her time and talents to numerous professional and charitable organizations. Koesters is a former high school teacher of nearly twenty years and now devotes her time to her family. She is also an outspoken advocate for SIOD (Schimke immuno-osseous dysplasia) which is a rare genetic life limiting disease that her eldest daughter endures. Erin and her husband, along with the grandparents, have been the sole caregivers and support system for their chronically ill daughter.

         Erin Koesters is honored and thrilled to represent her local community of Gretna, state of Nebraska, and our nation. She is dedicated to her passions of SIOD education, raising awareness and funding, including how each individual can contribute to help in their  own community.



 

Wednesday, August 26, 2020

It's Going Virtual!

 



Registration is open for 7th annual Little Giants Farm Run! VIRTUALLY

Registration is open for our 7th annual Little Giants Farm Run. The farm run is a great way to get outside and spend a fun-filled day with family and friends while social distancing. Proceeds go towards The Little Giants Foundation to raise money for SIOD awareness and help fund research. Schmike Immuno Osseous Dysplasia is a rare, genetic, life-limiting disease that causes great suffering to the children who have it. Symptoms include vascular and kidney disease, a weakened immune system, and short stature caused by problems with skeletal growth.
 
The run is a VIRTUAL event this year including a 5k run, one-mile walk and a kid’s dash. We encourage you to keep time and send it in to us via a GARMIN or other device! This year, the event will take place on Sunday, October 4th and packet pick up will  be held at 13714 S 84th St, Papillion, NE, 68046. on October 3rd where CDC guidelines will be practiced.

This run is a great activity for families to be together for a good cause. Little Giants Foundation was created to become a voice for those with SIOD and other rare forms of dwarfism. Please click the link below to register for our run and help raise funds while having a great time!

https://ultrasignup.com/register.aspx?did=76041

Friday, August 7, 2020

Keep On Moving!

 Well- for those of you following Emily's leg saga, we have an answer and some next steps toward progress.


Emily's ped doc feels she has: 

Complex regional pain syndrome is a chronic health problem that causes long-lasting pain. It is often caused by an overreaction in the body to a physical injury.

Symptoms include constant pain ranging from mild to severe. You may also sometimes have swelling, sweating, and changes in skin color and temperature in the affected area.

Complex regional pain syndrome might go away on its own over time. But in some people, the symptoms can last or even get worse. Common treatments are pain medicines, physical therapy, electrical nerve stimulation, and injecting an anesthetic into the nerves. ( Cedars-Sinai.org)

So he is working with the pain management team and some from physical therapy to set up next steps to help control her pain and not interfere with her other medications and do it all via zoom!


Wednesday, July 29, 2020

We're taking the run Virtual!



In order to keep everyone safe this year, we're changing the event to a virtual experience! Journey at your own pace while honoring Nebraska’s only living LIttle Giant, Emily Koesters and all SIOD children!


This event has become a time-honored, annual tradition for families, friends, and community members walking (or running) together to remember. 


There will be pre-event  swag pick-up on Friday, Oct 3, TBA.** CDC Regulations will be followed by staff, volunteers and participants alike!** 


https://ultrasignup.com/register.aspx?did=76041


Donations are highly encouraged this year as All proceeds from this event benefit the revolutionary SIOD research.


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Wednesday, July 22, 2020

Birthday and Boo Boos

July has been booming!  We celebrated our nation with Independence Day watching from home and then enjoyed birthday cake and each moment celebrating Emily's 17th birthday.  We took precautions ahead of time and welcomed the grandparents from Iowa for the weekend of her birthday to help celebrate.  It had been since February since we saw them and it was great to have them here.

Our blood drive with NCBB was extended from the 11th to the 18th and we are so grateful to be a part of helping to SAVE LIVES each year celebrating Emily's birthday and being Gretna's Hometown Hero.

A little bump in the road occurred. July 3rd Emily fell- twice in the back yard by the mulberry tree.  There were no visible signs of injury and she said her left leg hurt some, but okay.  As the days went on it hurt her more and more and even to the touch.  She wanted it wrapped and was using her crutches to not put wait on it.  We iced, elevated, and monitored from home.  

Fast forward to July 20 and it wasn't getting better and had some more swelling.  I contacted her primary doctor and explained it all and sent pictures of her legs.  July 21 her doc called us again and said to take her to Children's Emergency as he was worried of a blood clot.

So, I took Taylor-Jo to grandma's in town and Emily and I headed to Children's ER.  I was a bit nervous for several reasons: ER and COVID19- eek. I know they have safety measures in place, but we work so hard to stay away from it all!  What if it is a blood clot and we waited this long!  I'd feel awful.  What if it is broken?  And worst of all- Emily is nervous about going, probably for all of these reasons, and I need to keep a brave face as I don't want her anxiousness to turn into an episode/seizure!

We always appreciate the thoroughness of everyone and the amazement of her chart with SIOD.  We went in for her leg and in listening to her lungs- they heard crackling in her lower right lung.  Well- poop.

After a 40 minute ultrasound of her left leg to check for blood flow and other signs and a leg x-ray, she then had RT ( respiratory therapy) inhaler ( she has mild asthma although wasn't showing signs of issue) and the lung crackles cleared.  Good deal.  We found we will need to keep up with maintenance inhaler at home for now.  They did not find any broken bones, or blood clots-thank goodness- so her pain is a mystery for her leg.  

Emily was not happy with that answer as she has heard it so many times before with this disease.  So five hours later we went home with a keep icing, elevating and staying off of it and your primary will follow up in a day or two with a plan.

We are happy for summer and swinging and pool time in our backyard and the fact that Emily has outlived her life expectancy.  We are brutally reminded however of how quickly things can change and grateful it ended up not being emergent this time.

Stay safe and well and be mindful of others.

(no pics this time as technical difficulties.  go to our personal caringbridge site for photos:caringbridge/visit/emilykoesters


Friday, July 3, 2020

Gretna, Nebraska Home Town Hero Emily is Turning 17!



Emily is turning 17 on July 8th and we will be honoring her with our 3rd annual blood drive at Omaha NCBB Donor Center @ 12100 Pacific Street, Omaha, NE 68154
9 am - 12:30 pm
Call for your appointment today- 402-486-9414
Saturday, July 11th
Free T-shirt for presenting donors
Please help us honor Emily turning 17 by saving lives during this National Health Emergency!




We raised nearly $900 in t-shirt/sweatshirt sales last month!  Thank you for your orders and don't worry- we will have an opportunity to order more soon!