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!


Sunday, June 14, 2020

Only Child Living with SIOD in Nebraska



Emily is the ONLY child LIVING with SIOD in GRETNA, in NEBRASKA and in the MIDWEST!
OUR GOAL IS 1K MONTHLY PLEDGES! JOIN US!
Here at The Little Giants Foundation we think about, dream about, and Believe it will work! It has to.
Join our movement to fund #SIOD research and show your year-round passion for helping to find a cure! #gretnalife #nebraska #midwest #rally #funding #research #giveback #littlegiantsfoundation
Click on the DONATE link to set up your pledge today!  Click the drop down menu option!

Wednesday, June 10, 2020

HomeTown Hero NCBB & LGF Blood Drive

                                               From Last Year- This year on July 11th
In honor of Emily's upcoming 17th birthday, the Little Giants Foundation will be holding a Blood Drive on July 11th at TBA in Nebraska from 9 a.m. - 12 p.m.

The special thing about the Nebraska Community Blood Bank Hometown Hero Drives is that you can give back to your community in more than one way by participating. Not only are you donating blood to Nebraska residents, but money will be raised and donated to the Little Giants Foundation.

This will be the Little Giants Foundation's third year being honored as the Hometown Hero and we feel beyond blessed to see members from the community come together to help make an impact and so many lives.

We continue to fight each day by believing. Believing that each day fighting to stay alive will one day lead to a cure to Emily's rare genetic disease. With the help of others, we might be able to raise enough money to help fund research in finding a cure.

Wednesday, May 27, 2020

Information

For being in quarantine we sure are busy. Hahaha.
The girls wrapped up their school year with me and their distance learning, and we are awaiting better weather here in Nebraska so they can jump into our constructed pool Daddy puts up each year.
Omaha Gives was a great success for the foundation and our t-shirt sales have exceeded our goal and we still have 8 more days to get orders in!

customink.com/fundraising/little-giants-foundation

Today Emily has her marathon infusions of her every 21 day IVIG and quarterly pamidronate.  SIOD children have compromised immune systems and the IVIG is an immunoglobulin therapy that helps to give a little boost to help fight infections that these kiddos cannot fight on their own and the pamidronate is for her bone density.

Omaha Gives Believe Board of Donors
 

  Ready to head out to get infusions and labs


Tuesday, May 12, 2020

May continues to Bloom

May continues to bloom for us at the Little Giants Foundation despite the odds stacked against us all during COVID19.  Our hope is that those reading this are staying safe and well.  We are grateful for the abundance of kindness and generosity that others have shown during this uncertain time.  It humbles us once again to see how empathetic people are to think of us.

Last week we had a local DJ- Alex Pearson with DJAMP take it upon himself to hold a virtual trivia night for our non-profit and raise $855 from the goodness of people donating to our cause.  Such a huge help as we have had to cancel and postpone events due to COVID19.  But the research cannot be cancelled or postponed for SIOD.  The funding has to stay steady and increase to help save not only our Emily, but other children now and in the future.

We still have our pledge drive for ONE THOUSAND people donating $10 a month for our 2020 goal of $100,000 for research at Stanford.  Last week we updated our LGF gear and have some stylin shirts and sweatshirts as well.  Our goal is 50 to start to print and we are getting closer.  Here is the link to order: https://www.customink.com/fundraising/little-giants-foundation?ref=copy-link_social_desktop-campaign-page-share-top-v3&utm_campaign=desktop-campaign-page-share-top-v3&utm_content=little-giants-foundation&utm_medium=social&utm_source=copy-link&side=back&type=4&zoom=false

Emily is holding her own and knock on wood her numbers are stable enough for her and despite a few more aches and pains most likely due to the decrease in therapy work, she is having good days.

The girls finish distance learning on Friday the 15th and then "summer" unofficially begins.  And Taylor-Jo will be turning NINE on the 19th!

Omaha Gives is May 20th although we are taking scheduled donations now at https://www.omahagives.org/index.php?section=organizations&action=overview&fwID=2025

And finally- our gardens are planted although we need to get filler flowers at some point.  We are ready to tend to the outdoor life here on our little acreage in Nebraska and get ready for the next event and the next time we get to hang out in person with friends and family.

BELIEVE

Thursday, May 7, 2020

Kidney Celebration

May 6, 2008 Daddy Joe gave his kidney to Emily to help prolong her life!  Little did we know at the age of 4 this would be the beginning to her #SIOD diagnosis and many, many challenges to come.
Yesterday we celebrated their 12 year kidney birthday.  In their honor we have come out with updated Little Giant shirts, hoodies and crew neck sweatshirts!  Here is the link.  Our goal is 50 to start and get them printed and sent out!
Little Giants Gear- click to purchase!

Here are a few pics from our family of four celebration after Emily's every 21 day IVIG infusion was over last night: