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For being in quarantine we sure are busy. Hahaha.
The girls wrapped up their school year with me and their distance learning, and we are awaiting better weather here in Nebraska so they can jump into our constructed pool Daddy puts up each year.
Omaha Gives was a great success for the foundation and our t-shirt sales have exceeded our goal and we still have 8 more days to get orders in!

customink.com/fundraising/little-giants-foundation

Today Emily has her marathon infusions of her every 21 day IVIG and quarterly pamidronate.  SIOD children have compromised immune systems and the IVIG is an immunoglobulin therapy that helps to give a little boost to help fight infections that these kiddos cannot fight on their own and the pamidronate is for her bone density.

Omaha Gives Believe Board of Donors

 

  Ready to head out to get infusions and labs

May continues to Bloom

May continues to bloom for us at the Little Giants Foundation despite the odds stacked against us all during COVID19.  Our hope is that those reading this are staying safe and well.  We are grateful for the abundance of kindness and generosity that others have shown during this uncertain time.  It humbles us once again to see how empathetic people are to think of us.

Last week we had a local DJ- Alex Pearson with DJAMP take it upon himself to hold a virtual trivia night for our non-profit and raise $855 from the goodness of people donating to our cause.  Such a huge help as we have had to cancel and postpone events due to COVID19.  But the research cannot be cancelled or postponed for SIOD.  The funding has to stay steady and increase to help save not only our Emily, but other children now and in the future.

We still have our pledge drive for ONE THOUSAND people donating $10 a month for our 2020 goal of $100,000 for research at Stanford.  Last week we updated our LGF gear and have some stylin shirts and sweatshirts as well.  Our goal is 50 to start to print and we are getting closer.  Here is the link to order: https://www.customink.com/fundraising/little-giants-foundation?ref=copy-link_social_desktop-campaign-page-share-top-v3&utm_campaign=desktop-campaign-page-share-top-v3&utm_content=little-giants-foundation&utm_medium=social&utm_source=copy-link&side=back&type=4&zoom=false

Emily is holding her own and knock on wood her numbers are stable enough for her and despite a few more aches and pains most likely due to the decrease in therapy work, she is having good days.

The girls finish distance learning on Friday the 15th and then "summer" unofficially begins.  And Taylor-Jo will be turning NINE on the 19th!

Omaha Gives is May 20th although we are taking scheduled donations now at https://www.omahagives.org/index.php?section=organizations&action=overview&fwID=2025

And finally- our gardens are planted although we need to get filler flowers at some point.  We are ready to tend to the outdoor life here on our little acreage in Nebraska and get ready for the next event and the next time we get to hang out in person with friends and family.

BELIEVE

Kidney Celebration

May 6, 2008 Daddy Joe gave his kidney to Emily to help prolong her life!  Little did we know at the age of 4 this would be the beginning to her #SIOD diagnosis and many, many challenges to come.
Yesterday we celebrated their 12 year kidney birthday.  In their honor we have come out with updated Little Giant shirts, hoodies and crew neck sweatshirts!  Here is the link.  Our goal is 50 to start and get them printed and sent out!
Little Giants Gear- click to purchase!

Here are a few pics from our family of four celebration after Emily's every 21 day IVIG infusion was over last night:

Happy Earth Day and More!

Happy Earth Day All!
Today the girls and I worked on a science project sent from Grandma K that we hung in the windows once completed and now we will watch to see if our flowers grow and see the life cycle of water before our eyes!

As the Nebraska weather turns more like a traditional Spring we are getting outdoors on the acreage to move our bodies more, enjoy the sunshine while it is still cool enough as SIOD children like Emily are very sensitive to the heat and sunlight.

We sent out our quarterly newsletter last week via mail and email. If you have not received one and would like to please go to our website and fill out the form for future mailings.  Shout out to KNOCK OUT printing in Omaha for their KNOCK OUT pricing they gave us!  And a special thanks to our UNO Service Learning students for helping to create this quarter's newsletter.

I wanted to talk a moment about therapy and special needs, not only for Emily and SIOD children, but for any families out there as we are "without" services for quite some time now due to COVID19.
Here is what we are doing while not going to therapies of HETRA (equine therapy) and Aquatherapy or School PT:

1. Keep as active as possible whatever ability that is.
  When it isn't nice enough out we walk laps in the house or make obstacle coursed depending on ability.  We do yoga or stretch.  ( I'm talking 5-10 minutes at a time)

2. Call or email your services to help provide you with at home therapies.
  We have a plan laid out from Emily's PT school therapist as she was hurting more in her hips.

3. Take advantage of what your therapy places may be providing to keep the face to face virtual connections: (ie: HETRA is providing webinars for their riders to learn more about horses in different ways and Emily has received mail as well, which really makes a difference in keeping those relationships strong)

These are a few ways to keep your special needs child moving and less aches and pains while away from services.  We are stepping up our game at home as she is having more aches in her arms now as well- with the help of her therapists I will add.  The girls used "survivor" skills and made Emily a splint for her arm even!  How cute!

Please note our upcoming events in the graphic as well!
BELIEVE-

Keep On Keeping On

Like many of our non-profit friends and small businesses in particular we are tackling each day like we typically would with working towards our goals and finding new ways of communicating and raising awareness for our missions.

Although we have had to cancel and/or postpone events we had planned we are looking forward to these:

Our ongoing 2020 Pledge 10 Campaign
*One thousand people donating 10 dollars a month to raise 100,000 dollars!

May 20, 2020 online Omaha Gives initiative

July 11, 2020  Emily's Hometown Hero Blood Drive with NCBB

TENTATIVE postpone new date from May 8 to July 25- Omaha StormChasers Night at the Ballpark

October 4, 2020 our biggest annual event: LGF Farm Run (registration is open)

 

Donate Life Month

Many diseases and conditions can affect your kidney function by attacking and damaging the glomeruli, the tiny filtering units inside your kidney where blood is cleaned. These diseases and conditions are called glomerular diseases and can have many different causes. Focal Segmental glomerulosclerosis is a type of glomerular disease and describes scarring (sclerosis) in your kidney. The scarring of FSGS only takes place in small sections of each glomerulus (filter), and only a limited number of glomeruli are damaged at first. Focal Segmental Glomerulosclerosis affects both children and adults.(https://buff.ly/ApeBG2)

#SIOD children get FSGS, which eventually turns to kidney failure and dialysis and transplant are needed. One of the areas of research that your donation dollars goes to is figuring out the WHY!

Daddy Joe is a living donor hero to our daughter Emily. Nearly 12 years now that he gave his kidney to her! We are both registered organ, bone marrow  donors and blood donors!

 It didn't always used to be that way.  We were like perhaps some of you.  We knew about organ donation and we knew it was important, but that was something someone else did or it was only when you died that you give your organs.  Emily opened our world and we became educated and learned so much and now want to inspire and enlighten you to consider becoming an organ, tissue, eye , bone marrow and or blood donor as well.  You could save lives.  Go to https://www.organdonor.gov/ for more info and to https://bethematch.org in regards to bone marrow specifically.  Nebraskans can check out our friends at https://www.ncbb.org/ about blood donations.

Photo taken 2 years ago at a Donate Life Nebraska Walk. Joe donated his kidney almost 12 years ago to Emily

T-Cell Deficiency and COVID-19

SIOD is a multi system progressive disorder where T cell deficiency is only one component that is compromised in these children's little bodies.

Today Daddy took Emily for her IVIG (intravenous immunoglobulin therapy) start and labs for her immune system that she gets every 21 days.

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."

Read that last line again- INFECTION IS A COMMON CAUSE OF DEATH!
I have read that line for 12 years over and over again- it hasn't changed!  Emily has had many bacterial, viral and fungal infections, despite best efforts and some more serious and detrimental than others and yet somehow has come out on top each time, which is good, however; this makes her even more resistant to any lines of effective strains of defense!

So- please- do your part and STAY HOME, listen and adhere to what the experts are saying we do and WASH YOUR HANDS!  You may be fine and healthy, but the immune defenseless are not!