Navigating the Inevitable

Constantly aware, unusually prepared at a moments notice, we as parents of chronically ill children work to navigate the inevitable with whatever disease ails them.  This becomes even more important when our children cannot, will not or are not able to advocate for themselves.

Talking to Emily last night, working on coaxing her to go to sleep despite her hesitations to, I reminded her that every time she wakes back up.  Every time- sometimes it takes longer, but she always does.  She retorted, yes, but you never know with me, Mom.

Truer words were never spoken.  How do I argue with that.  Emily knows all too well what can and has happened to her throughout her SIOD medical journey.  I take great hope that every single day, week, month and year Emily is teaching, leading and showing the world how to navigate this rare genetic life limiting disease.

Emily has been having more break though seizures and the anxiety is creeping back in, but we have increased her seizure dosage with her neuro doc and should be seeing her conquer this again, too!

Emily's Nebraska Little Giants Day

Today has been Emily's Nebraska Little Giants Day.  This year we chose to "spread the love" and take valentines to a bunch of our town's local businesses.  We reached about 50 businesses over the past two outings.  It was neat to watch the girls advocate for SIOD awareness along with our friends mother & daughter team!  We had a lot of great reactions from businesses surprised that we stopped, to appreciative of the gift and thoughtfulness, to wondering how to react, to on lookers handing the girls money as the loved seeing this happen!  It does the heart good to be kind to others.  Together we can do something extraordinary!

We also had a lot of friends wear RED today in Emily's honor and we have been posting them on Erin Koesters personal stories on IG and FB.  We feel the love and support and are so appreciative!

February Love

February is the month of Love and we will be showing our love of Emily and the Little Giants Foundation by wearing RED on her Nebraska Little Giants Day, Tuesday, February 11th.  We hope you will join us in wearing a LGF shirt and/or RED, snap a selfie and share SIOD awareness on one of our social media sites or on your own!

SAVE THE DATES

Be sure to wear RED and/or your Little Giant T's on February 11th as we honor Emily Koesters' Nebraska Little Giant Day.  We'd love for you to share your selfies with us either on our FB page https://www.facebook.com/believeinlittlegiants/ that day or email us and we will share them for you!  (littlegiantsfoundation@gmail.com)

January is Jumpin'

We are rockin in the New Year and new decade with all the good things!  We had a fabulous Matching Program campaign with our affiliate- Midlands Community Foundation that ended January 6th and are awaiting totals, yet I'm confident we met our goal!  We attended their Reflection Ball last Saturday honoring First Responders- something we know about and have had to use ourselves with Emily.  Our board had it's first meeting of the New Year and we nailed down some event dates to be sure and add to your calendars with more details to come. We have a little bit for everyone: from local, to on social, to all across the USA and World!  All in the name of SIOD, research and the Little Giants Foundation.
AND - be sure to check out our pledge campaign!  1K people to donate monthly $10 (or any amount beyond) = $10,000 a month and $100,000 in 2020!  CLICK DONATE and the DROP down menu to choose monthly option!

D is for Dysplasia in SIOD

Hip Dysplasia is a prevalent part of SIOD.
Emily was in such pain with her hips prior to her double hip replacement that she was under palliative care because of the adult doses of medication being given to keep her "comfortable".  She would scoot herself along the floor on her knuckles around the house as she could no longer walk.  She was confined to a wheelchair at this point and her quality of life was diminished.
We went to the world renown skeletal dysplasia specialist Dr. Mackenzie at AI duPont Children's Hospital in Delaware.  He is the only surgeon to know of, have worked on and trusted to care for a child with SIOD in the USA thus far with these complexities.  He and his nurse practitioner, Colleen Ditro have been instrumental in Emily's care since we met 7 years ago.

Two years ago Emily had the hardware removed from that surgery.  Eventually she will need a hip replacement, her body will tell us when.  She partakes in PT's of aqua and horse once a week to this day for her quality of life, recovery, respiratory and endurance issues.  She only uses that wheelchair now for endurance or very sick days, and uses forearm crutches most days, yet gets around the house on her own.

We know that keeping her moving is key.  HETRA, aqua and school help us to do that. And of course our specialists in Delaware.

Two years ago after surgery

Dr. Mackenzie after 1st surgery 7 years ago

Emily in fully body cast after surgery 7 years ago

Happy 2020 Everyone!

🎊Only 6 more days to give to our affiliated fund of the Midlands Community Foundation's Matching Charitable Program of which the Little Giants Foundation is a part of! (See their website noted below for details)👇

💗 NEW YEAR; NEW 2020 TAX DEDUCTION!

😊Please consider giving and you may do so in ✌ ways: (1) go to our LGF website (link also below) and click on the DONATE LINK
it takes you directly to midlandscommunity*org our affiliate fund matching your donations through Jan 7th WHERE you can opt to give MONTHLY! or (2) send checks made out to LGF to 15603 S Hwy 6, Gretna, NE 68028.

🎉We thank you for the support for our Emily's rare, life limiting disease #SIOD and others afflicted past, present and future!

❤Please feel free to share and HAPPY NEW YEAR!🎉

Believe from Joe, Erin, Emily and Taylor-Jo Koesters #giving #believe #sisters #littlegiants #midlandscommunity #taxdeduction #monthlygiving

https://midlandscommunity.org/donor-giving/donate/

https://thelittlegiantsfoundation.org/donate-index-impact