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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instagram @littlegiantemily

Snap chat @jeek40

Twitter @littlegiants14

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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!