Sunday, January 20, 2019

Kidney News & #SIOD


Eight months with no surgeries...until the New Year. This time it's the Jeek Masters. So those new to our journey, or for those who forgot, Big Daddy Joe Mo donated his kidney to Emily 10.5 years ago. He had not one, but 4 incisional hernia repair surgeries over those next 3 years post transplant and would do it all again.  Emily has #SIOD a rare genetic life limiting dwarfism disease and he bought her some time. So when he started peeing blood a few weeks ago concern was obviously raised. Three doctor appointments and a CT scan later and here we are  getting his large kidney stone removed.  In his surgeons words, "since you only have the one kidney now we treat this emergent to make sure we keep that one working at its best."
The girls helped Joe come up with his 2019 word prior to all of this and the word is STRONG.  Good work girls, he is our rock.  Strong in body, mind and emotion for "his girls"!
Edit UPDATE on our patient: He is finally resting and about back to baseline glad it is done. He had a stent removed Monday, which helped!๐Ÿ™„
In light of the recent kidney challenges between Emily's spilling protein and Joe's kidney stone procedure, I wanted to bring focus to the renal disease portion of #SIOD .
GeneReviews states, "All affected individuals have progressive steroid-resistant nephropathy, usually developing within five years of the diagnosis of growth failure and terminating with end-stage renal disease (ESRD). All tested individuals have T-cell deficiency and associated risk for opportunistic infection, a common cause of death."
A friend wrote recently on one of my posts and I feel this is our mantra this year: "There is Strong and then there is Koesters Strong!" #believeinemily #littlegiants #dwarfismawareness #daddysgirl #transplant  #kidney #donate #life #Nebraska #researchfunding
 #transplant #kidney #livingdonor #daddy #love #believe #family #littlegiants


Thursday, December 20, 2018

SIOD at a Glimpse




Every 21 days an IV start and labs for her IVIG treatment! ๐Ÿ˜She adjusts to this routine, and some IV starts go better than others, but it still is a challenge every time because who enjoys getting poked and prodded all the time year after year?! ๐Ÿ’‰
Emily has a rare genetic life limiting dwarfism disease called Schimke Immuno- osseous Dysplasia (SIOD) and these treatments are one of many things that help keep her with us. Those suffering from immunodeficiency diseases (low T cell function)-as with #SIOD - having poor IgG levels can benefit from IVIg - a blood product derived from blood donors. Her infusions last 3 hours generally and are monitored by a home health nurse as any type of blood transfusion can cause the body to react.๐Ÿ˜ท We appreciate our friends of which some have been with us nearly 10 years who help to make each time as smooth as possible. 



Tuesday, December 18, 2018

Little Giants TV segment

Emily and I enjoyed being guests on metroTV! Here is the air schedule for the show that includes our appearance locally:

KPAO - Cox 22 / CenturyLink 89
   - Wednesday December 19: 8 PM
   - Thursday December 20: 4 PM
   - Saturday December 22: 2 PM

Below is the YouTube link for our segment. The first airing took place Tuesday, December 18th in the morning, so please feel free to share at will:

Sunday, December 16, 2018

Merry Christmas one and all!

๐ŸŽ„As has become tradition for our family we are sharing our Christmas card via social media this year and have donated what would have been spent in honor of Believe in Emily Koesters  to our Little Giants Foundation❤. We hope you will consider a donation as well to help raise funding for the research for Emily's disease #SIOD and others afflicted now and in the future. Go to DONATE NOW on the right side of this page and Click the Link .
๐Ÿค—And our affiliate Midlands Community Foundation is matching donations up to $5,000 for each new donor now thru Jan 7, 2019! That's giving!๐ŸŽ… Don't forget to please view & share the YouTube video "Believing in Emily"as well! #believeinemily #believeinlittlegiants #SIOD #1OF5INUSA #raregeneticdisease

Tuesday, December 4, 2018

Thank You for Believing in Emily!

 We are so fortunate to be recognized in the Packard Children's News that is put out by Standford Lucile Packard Foundation for Children's Health.
It is because of you that we were able to send such a sizable amount for #SIOD #RESEARCHFUNDING!
BELIEVE

Thursday, November 8, 2018

Falling Into More Momentum

WOW!  Things certainly have been exciting at Little Giants Headquarters ( aka our home).  We wrapped up September with final preparations and the FUNdraising event of our 5th Annual Farm Run! We had a great turn out even though the weather was cold, wet and dreary our hearts were happy! 
October kept us on our toes with Emily's daily, weekly, monthly ( depending on what it is) therapies, doctor appointments, IVIG treatment and labs and a few other tests sprinkled in just for fun.  (SIOD life folks) Emily and I took a medical trip out to our skeletal dysplasia friends at AI duPont Children's Hospital in Delaware the end of October as a follow up to her hip surgery this past April.
November is not slowing down any with the continued therapies, tests, treatments, labs and doctors.  Oh and Emily attends school part time in between!  That's the thing with SIOD, immuno suppression is no joke for these kiddos and as we enter this cold and flu season our precautionary measures get enhanced as even a simple cold can turn ugly fast for a child with SIOD.
We continue to work daily to educate, raise awareness and funding for SIOD research.  Please click on the side link to see what our head researcher, Dr. David Lewis at Stanford in California is doing to help our children now and in the future.  We also have more exciting things to come in future blogs.  I am speaking to as many groups, businesses and organizations as I can muster and note a few good things that have come our way like funding from this summer's golf event with Gretna Community Foundation and one picture of some of our Little Giants Board Members. (missing 3 from that photo- I'll share more later)
Also note we will be participating in #GivingTuesday Nov 27th!  It also happens to be the start of Matching Funds with our affiliate fund: Midlands Community Foundation.  New donors will be matched Nov 27-Jan 7 up to $5.000!  Click the Donate link to the right as well ANYTIME!
Please share, comment and consider becoming a monthly donor.
Believe-
Erin Koesters






Saturday, September 15, 2018

Farm Run- Get Ready!

❤It's a beautiful day in Nebraska! Join us for Emily's Little Giants Farm Run๐ŸŒป๐Ÿด 9-30-18 for #SIOD research!
 ๐ŸƒRegistration still open!๐ŸŽ–

Here are the registration and volunteer links:

https://ultrasignup.com/register.aspx?eid=8923

https://m.signupgenius.com/#!/showSignUp/10c0f4da9a722a1fb6-farm