Thursday, June 7, 2018

EVENTS!

May and this beginning part of June have been crazy good busy with Emily healing after surgery and doing her therapies, and we are still going strong with Mrs. Nebraska Worldwide appearances and speaking engagements!  I have been helping prepare for the golf outing June 12th and we are proud to also announce a huge event surrounding Emily's birthday in July! http://www.ncbb.org/lifesaving-story/emily-koesters-blood-recipient (click the link) - And don't forget our registration is open for our Annual Farm Run Sept 30!( click to register: https://ultrasignup.com/register.aspx?eid=8923

Gotta run to doc appointments now!

BELIEVE



Wednesday, May 2, 2018

Fundraising Opportunity⛳

⛳Calling ALL GOLFERS between Lincoln & Council Bluffs!
๐Ÿ’Registration is OPEN for our affiliated fund 2018 Gretna Community Foundation Golf Outing! Get your spot & join us for a fun-filled day supporting two great causes- one of which is our Little Giants Foundation❤! #SIOD #believeineemily
Details in the pics!๐Ÿ‘‡




Sunday, April 29, 2018

EMILY'S HIP SURGERY UPDATE




NOW FOR THE SURGERY ADVENTURE:
IF you have been following us on my FB page, or Emily's or our LGF page you may be a teeny bit familiar with the complexities of what it takes to get things that are even medically necessary to get approved, especially when it comes to the necessity of having it done out of state. Let's just say that we have been working on this since September of LAST year!!! Another reason I am in contacts with our Senators and "leaders" of the medical communities to make crucial changes needed in our system on behalf of children with life limiting diseases, like Emily. Anywho, Emily and I left on Monday, April 23 via donated miles on Southwest Airlines. Talked with a very nice, connected man who we will be staying in touch with and hoping for good things to come. We were taken to the Ronald Mc Donald House of Delaware and it was nice to be at a Home away from Home and familiar place we have stayed at at least 6 times over the past 4 years. Tuesday Emily had x-rays head to toe pre surgery- Dr. M is very thorough and such an expert in Skeletal Dysplasias, albeit not exactly SIOD, but in general. ( We had a slight hiccup with those xrays, which were pre approved back in NE with our services, but one phone call and it was resolved). Wednesday, April 25 was the big day. Dr. M was done extracting the hardware from both of Emily's hips just under 2 hours. He and Colleen ( nurse practitioner who is fantabulous) reported to me that the xrays from the day prior showed some calcification above her pituitary gland in her head that wasn't there prior. So they and the radiologist wanted an MRI of her brain to make sure it wasn't a tumor or something given Emily and her history and her disease of SIOD. Emily was very sleepy post op and we went to her room. The afternoon and evening overnight were a bit rough as one might imagine getting pain under control and figuring out how much to move. Everyone at AI duPont Children's Hospital/Nemours were as great as before to help us out. Emily's MRI was done Thursday morning. Initial reports show what they saw, but not anything more abnormal, so I am still not real clear on this and we will be following up at home with our docs. I will say this threw a huge lump in my throat as anything is possible with this kiddo and this disease and my mind went to places I had to work real hard on counteracting with my meditation strategies due to stress, lack of sleep, etc...PT got Emily up and moving very slowly after the MRI. Emily was not happy and started reciting old sayings of phrases and such that we have heard before and breaks your heart, but mama lion had to nip it in the bud and bring out the tough love with an edge of empathy to help motivate her and keep her mind right. This part of the "job" is never fun or easy, especially clear across the country on your own, but necessary and it seemed to have worked. We were discharged to the RMDH Thursday late afternoon ( grabbed the hardware as Emily and I really wanted it for a few reasons) and then left for home Fri afternoon. Thank goodness for nice people in the airport and that Emily is a super travel partner despite the pain. We sat next to another great guy on the way home- divine intervention- with some connections and we are looking forward to our future collaboration with him as well! ( he kind of reminded Em and I of Clark Kent and even had on RWB socks- just saying...)
Emily has made great strides even in the day or so we have been home! Literally. She is walking with better steps with her walker and us behind her as she has to heal- there are holes now where the hardware was that need to fill with bone over the next six weeks, so her bones are fragile and falling would not be good at all!!

Well, there ya have it- Three Jam packed months of crazy busy fun,and some not so fun and in between all of that was doctor appointments, IVIG treatments/labs, therapies, and school and life in general.

As always we appreciate our followers and try to keep up as it won't be slowing down any time soon! SO MUCH coming!
BIG NEWS COMING ABOUT SIOD collaboration! WATCH FOR IT HERE!

Monday, April 9, 2018

Early Bird Pricing for our 5th Annual Farm Run!

LITTLE GIANTS 5TH ANNUAL FARM RUN

SIGN UP NOW TO GET IN ON THE EARLY BIRD PRICING!

5K ( WALK OR RUN)
1.5 M WALK
 AND 1/4 MILE KID'S DASH

CLICK THE LINK BELOW AND SIGN UP TODAY!




New Sign up registration!  New Timing Company!

Same ol' fashion family fun!

Wednesday, March 14, 2018

Take me out to the ballgame!

We are so excited for Opening Night at the Omaha Storm Chasers baseball game, Thursday, April 5th!⚾๐ŸŒ€
We have 50 tickets for purchase @ only $12 a piece!
Little Giants Foundation❤ will be the community organization of the night!
Contact me, Erin Koesters, ASAP! (Info on flier photo)  Tickets proceeds will go to #SIOD research on Believe in Emily Koesters behalf!
#gretnachamber #greateromahachamber #sarpycounty #fundraiser

Sunday, February 18, 2018

Emily's Nebraska Little Giants Day/Week

In honor of celebrating our differences with our friends Omaha Storm Chasers ๐ŸŒ€⚾and the five elementary Gretna Public Schools๐Ÿ’š, we engaged in several activities in our community.  I enjoyed spreading awareness and educating the children of our community about kindness, our daughter Emily Koesters and our Little Giants Foundation❤ as Mrs. Nebraska USA Worldwide!๐Ÿ’ƒ
I shared Understanding Dwarfism book "Not Too Big, Not Too Small...just right for me!" by our friends James Korpai and Darlene.  The Stormy mascot and friend, Becki also read and helped act out the books with the students.
One evening we attended a home HS basketball game and threw out LGF shirts. The middle schools helped educate about Emily and LGF, too. Emily's school, Gretna Middle School had activities all week and all of the students and staff wore PINK stickers with Emily's name on Friday. So cool. Emily even received an award.
Also, the staff who chose to participate in wearing jeans on Friday donated $5 each and chose our organization. They raised over $2,000 toward SIOD research!๐Ÿค—
I am super stoked to announce LGF will continue to TEAM UP with the Storm Chasers during the opening game of their season, April 5th! Specific details to come! ⚾๐ŸŒ€❤  #SIOD #believeinemily #gretnapublicschools #omahastormchasers #mrsusapageant
#mrsworldwidepageant









Sunday, January 28, 2018

Exciting SIOD Research Update

Emily and I had a very productive time while in California this past week.  This had been in the works really for the past year.  If ya'll recall the original lab in Canada shut down in Dec. of 2016, but Dr. Boerkoel put us in touch with Dr. Lewis from Stanford who was taking over what could be salvaged from the Canadian lab and working on really three primary things for the good of SIOD.  1. T- cell deficiency ( immune system,  Haplo stem cell transplant prior to kidney transplant- if possible with a less invasive chemo regiment) 2. Vascular work for the issues with SIOD and 3. ultimately a drug protocol for all children diagnosed with SIOD.  
Again- this is all research, and much more to it than I am posting here and in the beginning stages, but exciting none the less and great to be in on the ground floor! Along with this comes a hefty, yet doable, $30,000 a month to keep the lab open and $6 million to carry out the research for it to be a realization! We will address this more later and how ya'll can help prolong Emily's life and others! I took several pics of the docs there, the lab where DNA work is active and those working in the lab.  Everyone was thoughtful, genuine and great to talk to while Emily and I were there.

So, as you have read 2018 has been interesting to say the least thus far.  I haven't even touched on all the health care issues with Emily and other children with life limiting diseases that I have been working on with our government!  Or what lies ahead this year! 

Thank you for Believing in Emily and remember, Together We Can Do Something Extraordinary!

Follow the link to DONATE on this page! Even $1, $5, or $15 makes a difference! Truly.

Believe-
Erin Koesters







Tuesday, January 9, 2018

SAVE THE DATE!


SUNDAY, SEPTEMBER 30, 2018 @ 4 PM

Watch for more details to come!

Write it on your calendars today.