Gearing up to go Back2School!

One of the questions I get most often as Emily's mom is: Is Emily able to attend school?

The quick answer is, yes. The more important detailed answer is yes,

on a modified schedule. Emily did NOT attend preschool due to #SIOD.

She attended only her 1st day of Kindergarten due to SIOD.

She was taught at home and in the hospital for several years

after and on extended hospital stays due to her SIOD.

This is part of living with a rare genetic life limiting disease

or any chronic kind of illness. Emily only attends school 3 days

a week for 3-4 hours on those days. This seems to be her best

quality of life school zone. Gretna Public Schools has been amazing through it all! 🙌

She takes many medications that we give before she goes, she requires more sleep,

more cognitive rest and has doc and therapy appointments mostly

on the other 2 days. Not to mention risks of infection! Is this schedule

for ALL SIOD kiddos? No. Honestly many of the SIOD children either

don't live long enough or aren't old enough yet. Another reason why

your donations matter. Another reason we must keep raising funding

to help prolong these children's lives so they too may attend school in

whatever way that looks for them and their medical necessities. 

We managed to sneak in quite a bit of last minute summer fun this past week

before school begins for us on Thursday. Our friends, Neely and her human

Shannon came by during Emily's IVIG infusion to help distract and comfort.

We played at a friends pool, got back to school hair do's, went to the doctors

and therapies and enjoyed some time at the Children's Museum.

We hope our readers have enjoyed their summer as much if not more

than we have and remember to stay safe, have fun and wash those hands!

                                 

                                                

CAUGHT UP IN THE COUNTRY!

What do you do when your Little Giant turns SWEET 16 and she wants to see in concert and meet one of her favorite country artists, Rodney Atkins!  Why you grab tickets to your local county fair and go of course!  And with a little finagling you get meet & greet tickets for an extra surprise!

                               

All Things Camp & A Race to Run!

What's less than 10 miles from our home?  Allows kids who have or have had cancer or blood disorders a chance to be kids and provides hours of unending fun?  Why Camp COHOLO of course.  A camp that fosters COURAGE HOPE & LOVE and provided a safe refuge for Emily for what I can best recollect as these past 9 years!

 

 

 

Looking for a family fun adventure that helps others?  Look no further!  Run ,walk or skip and help raise funding and awareness for #SIOD!  Be sure to register for our 6th Annual Family Farm Run here today:
Farm Run Registration

Also- did you see this article on blood donation?
Life Saving Blood

Saving Lives, Sweet 16 and Summer

June 29th we held our 2nd Annual Blood Drive in Honor of Emily's birthday and had 15 new donors and 17 walk ups that day and a few more!  Over 30 pints and over 30 lives saved and donated to our local hospitals.  We love our partnership with Nebraska Community Blood Bank (NCBB).  

Emily turned SWEET 16 on July 8th!

 

Summer has been treating Emily well this year as she continues to maintain therapies, doctors and treatments.  We are so grateful for the good times for her with this disease.  We know it can be different any moment. We are in full swing for our next FUNdraiser happening September 22!  Keep a watch out and mark your calendars.

Big Update on Emily and LGF

April was quite the month with all of the flooding around us and we narrowly escaped it all and were/are very thankful as we tend to flood out here.  Some basement water, but we are used to that.  Our friends around us were not so fortunate and our hearts still go out to all as everyone affected tries to recover.  We partnered up with Nebraska Community Blood Bank again this year and have done even more with them and more to come as we know first hand what blood donations do in helping to save lives like our Emily! We also helped out our friends with Angels Among Us as they opened up a new center at the Ronald Mc Donald House of Omaha and we got to meet the real Ronald!  AAU helps children and their families like they helped us when Emily was going through cancer treatments to help pay regular bills as they don't stop for cancer or any disease.
May we had a StormChasers fundraising baseball event, celebrated Emily and Joe's 11th kidney birthday on May 6th and Emily's younger sister's birthday- she turned 8 years old.  We also celebrated AAU's grand opening and LLS ( Lymphoma Leukemia Societies) Gala and our friend Lily was girl of the year and one of Emily's docs,Patel, got Man of the Year! The girls finished their 9th grade and 2nd grade years of school and then we had a Ribbon Cutting for our NCBB friends where I spoke about Emily's impact as a blood recipient.  (Grandma J in the mean time was in Hawaii being treated like a Queen with her eldest son, Chuck and his wife Annie- a much deserved month's vacation!)
This brings us to June: I went on a much needed 3 day retreat and Joe handled things around here with the girls.  I had been running like a mad woman and until I stopped for FIVE minutes and gave myself permission to tune out I hadn't realized how crazy busy I had been.  SO thanks hubby!  Then We all left for COLORADO!  5 days of mountain bliss!  We stayed with Emily's very best favorite nurse ever, Leanna and her sweet family for 2 days and then stayed in the Rocky Mountains for two days in a tent!  The weather was amazing- comfortable warm during the day and cold at night!  What an adventure we had.  We knew Emily would be wiped out after, but it was worth it to create those memories as a family.  She tried to attend one day of her usual Children's Choir Camp but was too worn out to go all week.  Taylor-Jo attended gymnastics camp and then Grandpa and Grandma King camp in Iowa the following week. She on the other hand was not worn out and loved it all!
Our ROUGHRIDERS friends honored Emily at their big charity event last weekend where I was asked to speak and we were also surprised with another generous donation- well several by nite's end for our Little Giants Foundation!  And yesterday we rounded out the month with a Sweet 16 honorary blood drive for Emily with NCBB and we are pretty sure we met and exceeded our goal, which means many lives saved with blood donations that feed into our hospitals where Emily is a recipient and funding for our foundation for SIOD research at Stanford! And Emily was on a billboard in Omaha gifted to us to promote the drive!  So thank you to all who participated yesterday!
Tragedy struck our town of Gretna, and many of you may have heard in the news about the 4 of 5 young girls who lost their lives in a car crash on June 17th.  Addisyn Pfeifer was a friend of ours, her whole family and she had just turned 16.  Emily phrased it best when asked how she was doing with the loss of her friend, "I am sad and mad!"
Our hearts truly go out to all of the families and to the young girl, Roan who is still with us recovering from burns. Our family lost Kyle and his friend Jake when seniors in HS in that same location in December of 2006, so I may not know your loss, but our family does and we ache for you all.  All we can do is continue to lift all up in loving light.
And speaking of loving light- Emily officially turns 16 on July 8! Such a blessing and so astounding as children with SIOD usually don't live past the age of 9.  We know what a gift she and her sister are and are so excited to celebrate this milestone!
Thanks again for tuning in and I will work to attach some photos and videos, too!
BELIEVE-
Erin Koesters

Virtual Race

We’ve partnered with LPFCH at Stanford for SIOD research & you can virtually join to support no matter where you are and run/walk for Emily & SIOD. ⠀
⠀
Register here today!👇⠀
https://my.supportlpch.org/team/226195
⠀
🏃🏻‍Make sure to sign up as “VIRTUAL RACER” if you’re not local to Stanford. Stay tuned for event on our page for those running in Nebraska /Iowa and more! ⠀
(Ex: fee $40 to run, so just donate that in the virtual racer category)⠀
🏃🏼Note from Stanford: “Our virtual runners make a donation to SIOD research. Our friends and family will automatically receive a fundraising page upon registering to share with their supporters. As a note, we do send an email to all participants who select “other” as the fund they would like to fundraise for to confirm in writing where they would like their funds raised to go towards.”

Emily Update

There is kind of a lot of a little that is going on with Emily right now. Her left ankle is better, however she is having increased days and amounts of headaches (perhaps migraines even) which can be prevalent in #SIOD. Increased spilling of protein from her kidney. At the same time her daddy Joe had his kidney stone surgically removed earlier this year, Emily has increased crystals from his transplanted kidney (citrate and calcium). So she is on one additional med for the protein spill and we will try increasing even more water and lowering sodium intake for the crystals. Now she is having troubles with her left arm. Emily has missed quite a bit of school and her therapies these past two months to her already modified schedule because of these pains and it is affecting her quality of life, which her dad and I strive to keep at the best level we can! Through it all her doggy, Pumpkin is by her side and helps to make it all a little bit better.