Merry Christmas and Happy New Year

 

We hope everyone had a joyous, peaceful, safe and healthy Christmas celebrating in your circles.

We only had my parents over with protocols in place.  Nebraska got a lovely snowfall before Christmas and then after we got 7" where we live!  Taylor-Jo was very happy and Emily and Pumpkin endured the cold for a short time and photo opp!  Hahaha.

We'd like to remind you that our affiliate Midlands Community Foundation is Matching Funds through Jan 5, 2021, so there is still time to donate for year end or beginning of 2021.

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

We are hopeful for 2021 and can't wait to share what is coming...

Season's Greetings

 

As we count our blessings that both Joe and Emily seem to have recovered primarily from their COVID19 experiences we want to take a minute to wish you Joy in your hearts, Peace in your souls and the abundance of health in your lives.

We at LGF also thank you once again for your support in our foundation and our Emily.  You are helping to make a difference in not only her life, but other children affected with SIOD past, present and future.

Below are a few links and attachments: Feel free to share the articles and videos in your circles.

Here's to a Happy, Abundant, Healthy New Year-

Erin Koesters- Executive Director of Little Giants Foundation

https://thelittlegiantsfoundation.org/

Be sure to check out the EVENTS section for our sponsor logos and watch our new video on the HOME page made by our UNO collaborative- Kylie Squiers Photography

Our feature story in Edge Magazine: http://edgemagazine.com/defy-all-odds/

Our recent Stanford Project Goal: https://my.supportlpch.org/fundraiser/2910768

Infusions and COVID

 Despite our best efforts, COVID19 entered our home these past several weeks and hit Daddy Joe real hard and knocked Emily down, but not out.  Taylor-Jo and I were asymptomatic at first and then had mild symptoms.

Below is what we had been doing and continue to do because not everyone chooses to wear a mask to help protect others like our Emily who is immune suppressed.  We also have been remote learning since March and continue to do so this school year, limit family and friends to only a select FEW adhering to CDC guidelines before, during and after these short visits that have been few and far between if at all.

Before COVID-19 we have taken precautions all of Emily's life.  Emily was born premature and we had home precautions in place from the get go before she was even diagnosed with SIOD.  Here are our health and wellness practices that we have instilled for her entire life and depending on what virus or season of illness presented itself, we would step up our precautions accordingly:

*remote healthcare
*wash hands with soap and water for 30-40 seconds
* avoid crowds
*limit public interactions
* wipe down knobs, handles, keys, remotes, phones
*change clothes after being out in public or after school
*shower after being out in public or after school
* Lysol purses, backpacks, bags
* wipe down steering wheels and doors handles
*wear masks in public
*UV light to clean controllers, laptops, keys, phones
*take shoes off at door
*limit visitors

The CDC states that, "serious underlying medical conditions (like SIOD) are at a higher risk for more serious complications from COVID-19", and we do not take  that lightly as we have family members  and friends as well who are immune suppressed due to cancer, transplants and other health issues that qualify them without being of the older population.

Children with SIOD, and really any chronically ill child, become resistant to effective strains of defense over time as they are used to these lines of medications in their medical journeys and therefore even a cold can be detrimental to them.

Gene Reviews/NCBI has a publication with Morimoto & Boerkoel (both from Canada during our initial research) Lucke of Germany and yes, Lewis from Stanford even before he took over the SIOD research from Boerkoel, where they talk about T Cell deficiency first published in 2002 and updated in 2016.  "Immunodeficiency increases the risk of opportunistic infections such as pneumonia.  More than half of individuals with SIOD have recurrent infections with bacteria, viruses and fungi.  Infection is a common cause of death."

After a few ER visits and lots of tender loving care, medications and conversations with Emily's doctors at Nebraska Med and Stanford we know things are improving and better than what they could have been.  We are thankful for that.

Emily got her IVIG today and labs so I will be interested to see how those are today as she improves.

COVID19, SIOD and Cover Photos

 My oh my what a whirlwind of a week thus far.  COVID19 may have hit our family, but it won't keep us down.  Well, maybe a little, okay, maybe a lot, yet we are fighters.  Thank heavens Emily's symptoms after her ER visit Wednesday haven't grown any.  She is better than last week and keeping mild symptoms of plugged up nose, headaches, fatigue and some tightening of the chest so she uses her inhaler.

Daddy Joe, however; has been doing worse than Emily and had to go on oxygen at home and then to the ER last night and is back home and getting relief from a steroid shot in his IV and meds at home to help assist his lungs as a chest x-ray and CT scan showed he has COVID going on in there.

Taylor-Jo and I stayed asymptomatic until recently.  Our symptoms are real mild and we keep repeating that we are healthy, strong and will remain so for our family.

Amidst all of this COVID craziness we are still thankful for the health we do have, for our family remaining home together, for the kindness of friends and family and for our supporters of LGF.

Giving Tuesday was a giant success and Matching Funds also started.  There's so much happening and to check out:

1. Our new video made by our SLA UNO Capstone students (Kylie Squiers Photography)

Believe In Little Giants Foundation

2. Emily's Cover Photo and Article in the Edge Magazine

Defy All Odds

3. Matching Funds with our affiliate MCF

BELIEVE

Working to Understand it All.

 As a mom I am finding it challenging to comprehend many things today.

I am STILL grateful and know we have many blessing past, present and future, yet I don't want that all to be a cover for all the emotions I feel.  I haven't ever hidden too much throughout Emily's medical SIOD journey and won't begin now.

First off, if you did not ready the entry before this blog- please take 2 minutes and do so.  Next know that today is a different day and although I am thankful I am also scared, upset and frustrated.  I also want my readers, supporters to know that I am not ever looking for answers.  I write to help keep log of our journey, to help others walking the SIOD path & those with medical journeys of their own and those who want to keep update on our girl, Emily and finally as a cathartic process for my well being.

I find it difficult to comprehend why wearing a mask is seen as political?  I find it difficult to comprehend how anyone else's selfish acts deem it okay for anyone else to have to be put in harms way when there is scientific data to show otherwise?  It is NOT okay that at 5 am this morning as I held onto my daughters hand, comforting her thru an episode holding back tears that after she was done her first words were that she wasn't ready to be called home! 

It is NOT okay that after getting our hopes up for a specific antibody infusion she was going to get today we learned that the one criteria overlooked is that she doesn't weigh enough and can longer get that infusion to help her combat COVID19.  It is NOT okay that even though it was a trial and government parameters and we knew it wasn't a cure, but it had given her hope was shot down.

So where does this leave us?  Waiting, Watching and Seeing.  This is nothing new for us mind you.  It doesn't make it any easier though.  After our ER trip Wednesday all Emily can think about is how she is dying.  She prays to God, Jesus and Mary a lot and asks them not to take her home yet, please.  Is she clinically that bad- NO- and thank goodness.  After getting word this morning she could not get the infusion she said, "I am going to die, aren't I."  This is not okay.  

I said, "no!" 

 She replied, "yes, this is bad.  I have COVID and my body can't fight it."

  I retorted, "EMILY, you have SIOD and if you were going to die it would have been years ago.  You have fought so much.  You will beat this, too!"

  She said she isn't so sure about that.  She said, "Why won't people just wear a mask, mommy?  For kids like me?"

I share these conversations with you because it is not okay that we must have these kinds of visits with each other, yet I am grateful she shares so much with me.

I feel so for Joe trying to recover from COVID on his own isolated upstairs.  I feel bad for Taylor-Jo as the younger sister, exposed yet doing all she can to help me out.  I feel bad for Grandma J who also has been exposed because of us because she is the ONLY other person here who knows how to help care for Emily and give her her medications. I feel bad and sad for other families who have been walking the COVID19 line.  I feel sad for so many!

If you are still reading this, there have been so many reaching out and saying, what can I do or if you need anything let me know.  Well- here is a short list so listen up and see how in 30 seconds to maybe 5 minutes you can help- choose one, two or all of the following:

1. Wear a mask in public.

2. Watch this new video we have, like it and SHARE IT to bring awareness to LGF and SIOD!

Believe in Little Giants Foundation

3.Share this post!

4. Giving Tuesday is Dec 1st!  Go to our ShareOmaha page and GIVE. (Matching Funds starts that day with our affiliate MCF as well!)

GivingTuesday402

5. Joe and Grandma J's birthdays are Dec 5th!  They always get the short end of the stick.  Joe turns 54.  Grandma J turns 80.  Send them a text, a card, or give them a call to wish them well and help lift their spirits.  (if you want addresses text me or email littlegiantsfoundation@gmail.com)

6.  Emily is digging Campbell's Chicken Noodle soup right now.  Drop some off on our porch per her request, please. She will share with Daddy.

BELIEVE-

Mommy Erin ( doing my best to stay strong, healthy and fit in mind, body and spirit for my family)

Thankful...

 We give Thanks for one another.

We give Thanks for those who do unselfish deeds.

We give Thanks to those who wear a mask.

We give Thanks that Joe got a second test.

We give Thanks that we have room in our home for Joe to isolate upstairs.

We give Thanks that Grandma J could take Emily last Saturday and keep her safer from exposure,

We give Thanks that Grandma J knows how to care for Emily.

We give Thanks that Taylor-jo and I got some quality days together.

We give Thanks for remote learning.

We give Thanks that Emily’s seizures the past two days were small.

We give Thanks that when Tay and I dropped off groceries for Grandma and Emily this  morning I could break the barriers and  comfort Em.

We give Thanks for grocery pick up services.

We give Thanks for our team of doctors.

We give Thanks to the healthcare workers in the ER today.

We give Thanks to Emily’s nurse that was on who cared for her 12 years ago and remembered her from her transplant!

We give Thanks for the precautions in place.

We give Thanks for IV fluids and meds to treat the symptoms for now. 

We give Thanks for supportive friends and family.

We give Thanks that even though Emily now has tested positive for COVID19, too that she can beat it.

We give Thanks for her resilience!

We give Thanks for her attitude as she said, I just am telling my body this is like a bad cancer and I beat that twice so I can beat COVID, too!

We give Thanks to Kylie Squiers photography, as this isn’t how I imagined debuting this video tonight, yet know it will shine out for Emily! 

We give Thanks for this SEASON and the REASON; even though I am scared, I BELIEVE!

https://youtu.be/W-kMLlR1AZ8

Tag Team

 

Joe and I are used to being a tag team when it comes to caring for our children and in regards to who is with whom when doing the doctor thing.  This past week really got to me though as the risk for infection becomes higher all over including our state.  We cannot be transmitters of this pandemic as Emily's SIOD disease keeps her with a severe immune deficiency and it would be a huge risk of morbidity.

That being said there are times we have to take her in to be seen and there are times where telehealth will suffice.  Joe took her into her oncologist one day and I stayed with Taylor-Jo (her younger sister) at home while she did remote learning, then next day I took Emily to her infusion and labs while Joe stayed home with Tay and the next day both of the girls had telehealth and our Morkie, Pumpkin jumped in on the action. 

We are watching a few things on Emily in regards to oncology and kidney, yet nothing to get too excited about right now.  As Joe and I continue to tag team we hope it provides some solace to other families going through a medical journey as well, that we are not in this alone. 

Thank You and Save the Dates!

 

We THANK YOU Veteran's past, present and future for your service!

SAVE THE DATES!

For #GivingTuesday402  on December 1, we can respond to 2020 by acting together... as

ONE. Together, we can harness the power of ALL, with ALL gifts and ALL ways of doing good. Give an early gift with donation code GIVINGTUESDAY at https://shareomaha.org/littlegiantsfoundation.

&

ALL NEW donations  received Dec 1- Jan 5, 2021 take a look!

Emily's Comfy Pillows

 

Emily's Grandma King in Iowa has been making little comfy pillows for over a decade.  We gift these pillows to other children while they are in the hospital at ALL of the facilities that Emily has stayed at over the years.

A Mother's Hope Doesn't Fade

 "Courage does not always roar.  Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow'."  Mary Anne Radmacher

I have prided myself on being a courageous lioness for a very long time.  I embrace my inner Leo and use it to help guide me through each situation I've encountered and especially so during this long medically fragile journey with Emily and her battle with SIOD.

Some days though, some seasons, it is more than a mother can bare.  I have struggled many times, more than I can count really, with the angst of feelings and powers beyond my understanding and those overwhelming moments of life not turning out how we would desire.  

An excerpt from my journal:

    There’s so much I don’t share, ever!  I don’t include, yet I am trying to include here as the thoughts behind how this medical journey plays out I feel is just as important to learn and grow from.  The patterns.  The challenges.  The dealing with it.  The cycles.  The depths. The highs and lows.  The outcomes and how we keep digging our way up and out...We don’t know the difference between fear/anger and happiness/joy.  Our heart rate goes up, sweaty, butterflies. What gets me is I can feel it, know it and see it playing out, yet am slow to correct it or keep quiet the voices within me.

Last weekend we held our virtual version of our 7th Annual Little Giants Farm Run. The 3rd we had swag bag pick up at the farm where we typically would have the run. The owners had a fall festival with a few vendors and sold pumpkins on our foundations behalf to help with funding for research. This was the FIRST time I was out in public amongst others since the pandemic started in March. The only reason I attended was because it was outside, following CDC guidelines and we wore masks. I was scared. I did it anyway. There weren't a lot of people by any means, but as a few more showed up, I felt my first sense of anxiety and had to walk away and take deep breaths and give myself a pep talk. For the first time I entered a world I do not want back, nor wish on anyone. I powered through with quiet courage and all has been fine, but the feelings I had that day were a reminder of what mental anguish can cause and how important mental health is.

The thing is -as a mother- my HOPE doesn't ever fade. Despite how I may or may not feel on any given day, the lioness within me roars, unleashes and I move forward to conquer another moment, another day, another season. Where do I find the strength? The courage? It is a process. A daily choice to get up and try again tomorrow.

Thank EwE!

 In honor of Emily, Dwarfism month and all children with SIOD we were thrilled to hold our VIRTUAL Farm Run this year in conjunction with the Mannfield's Fall Festival.  

Little Giants Foundation is not only a voice and face for those diagnosed with #SIOD like our Emily, it also provides support for research, connects those affected with SIOD and works to enhance awareness with families, doctors, researchers, and educators along with public and private parties.

Supporters like you help make our research and treatment a reality for those families that suffer from SIOD.  

We want you to be an active member of our community, too. Your donation means that you understand just how valuable bringing awareness to those diagnosed with rare forms of Dwarfism- in particular -Schimke Immuno-osseous Dysplasia (SIOD) is.

We are BLESSED to know you and have your support. 

The totals aren’t all the way in yet, but so far we are  a tad over 4K from our 7th Annual Little Giants Farm Run- VIRTUAL event!

Emily and Snocap would like to wish y’all a great big huge Thank Ewe for your pumpkin purchases and to those donors that made the fall fundraiser an extra special success!!

Thank you from  the bottom of our hearts! ♥️ And Snocap’s too!

An extra “BIG” thank you goes to William R Kaplan and Stacia Kaplan for coming out to make Emily’s fundraiser such a success!  Who knew that at the end of that days event when the girls came just to pick out their own pumpkins quick you’d be there and give that support! 🐑🎃🍁

Thank You LGF Virtual Farm Run Sponsors

 

Registration and Sponsorship is still OPEN!

 Registration is still open for our 7th annual Little Giants Farm Run. The farm run is a great way to get outside and spend a fun-filled day with family and friends. Proceeds go towards The Little Giants Foundation to raise money for SIOD awareness and help fund research. Schimke Immuno Osseous Dysplasia is a rare, genetic, life-limiting disease that causes great suffering to the children who have it. Symptoms include vascular and kidney disease, a weakened immune system, and short stature caused by problems with skeletal growth.

 

The run is a family-friendly VIRTUAL event this year including a 5k run,and a one and a half-mile walk.  This year, the event will take place on your terms on Sunday, October 4th  with swag pick up at 13714 S 84th St, Papillion, NE, 68046 on Saturday, October 3rd where CDC guidelines for Sarpy County will be followed.  * This location will also have a Pumpkin Festival for you to purchase your seasonal pumpkins with a portion of proceeds going to LGF!  

Please kindly donate an additional $10 to your registration if you would like or need your swag bag sent via snail mail.

This run is a great activity to bring families and friends with safe COVID19 practices in place together for a good cause. Little Giants Foundation was created to become a voice for those with SIOD and other rare forms of dwarfism. Please click the link below to register for our run and help raise funds while having a great time!

https://ultrasignup.com/register.aspx?did=76041

Sponsorship levels are still available as well.  Please message littlegiantsfoundation@gmail.com ASAP for the form as these are due the 21st of September.

Wife,Mom, Advocate

 

Koesters is a health and wellness business owner for It Works Global, Executive Director of the Little Giants Foundation on behalf of her eldest daughter, and she enjoys weight lifting, running and adventuring with her two daughters in her spare time. She also devotes her time and talents to numerous professional and charitable organizations. Koesters is a former high school teacher of nearly twenty years and now devotes her time to her family. She is also an outspoken advocate for SIOD (Schimke immuno-osseous dysplasia) which is a rare genetic life limiting disease that her eldest daughter endures. Erin and her husband, along with the grandparents, have been the sole caregivers and support system for their chronically ill daughter.

         Erin Koesters is honored and thrilled to represent her local community of Gretna, state of Nebraska, and our nation. She is dedicated to her passions of SIOD education, raising awareness and funding, including how each individual can contribute to help in their  own community.

 

It's Going Virtual!

 

Registration is open for 7th annual Little Giants Farm Run! VIRTUALLY

Registration is open for our 7th annual Little Giants Farm Run. The farm run is a great way to get outside and spend a fun-filled day with family and friends while social distancing. Proceeds go towards The Little Giants Foundation to raise money for SIOD awareness and help fund research. Schmike Immuno Osseous Dysplasia is a rare, genetic, life-limiting disease that causes great suffering to the children who have it. Symptoms include vascular and kidney disease, a weakened immune system, and short stature caused by problems with skeletal growth.

 

The run is a VIRTUAL event this year including a 5k run, one-mile walk and a kid’s dash. We encourage you to keep time and send it in to us via a GARMIN or other device! This year, the event will take place on Sunday, October 4th and packet pick up will  be held at 13714 S 84th St, Papillion, NE, 68046. on October 3rd where CDC guidelines will be practiced.

This run is a great activity for families to be together for a good cause. Little Giants Foundation was created to become a voice for those with SIOD and other rare forms of dwarfism. Please click the link below to register for our run and help raise funds while having a great time!

https://ultrasignup.com/register.aspx?did=76041

Keep On Moving!

 Well- for those of you following Emily's leg saga, we have an answer and some next steps toward progress.

Emily's ped doc feels she has: 

Complex regional pain syndrome is a chronic health problem that causes long-lasting pain. It is often caused by an overreaction in the body to a physical injury.

Symptoms include constant pain ranging from mild to severe. You may also sometimes have swelling, sweating, and changes in skin color and temperature in the affected area.

Complex regional pain syndrome might go away on its own over time. But in some people, the symptoms can last or even get worse. Common treatments are pain medicines, physical therapy, electrical nerve stimulation, and injecting an anesthetic into the nerves. ( Cedars-Sinai.org)

So he is working with the pain management team and some from physical therapy to set up next steps to help control her pain and not interfere with her other medications and do it all via zoom!

We're taking the run Virtual!

In order to keep everyone safe this year, we're changing the event to a virtual experience! Journey at your own pace while honoring Nebraska’s only living LIttle Giant, Emily Koesters and all SIOD children!

This event has become a time-honored, annual tradition for families, friends, and community members walking (or running) together to remember. 

There will be pre-event  swag pick-up on Friday, Oct 3, TBA.** CDC Regulations will be followed by staff, volunteers and participants alike!** 

https://ultrasignup.com/register.aspx?did=76041

Donations are highly encouraged this year as All proceeds from this event benefit the revolutionary SIOD research.

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