The Brain

 The brain is so complex.  Emily's brain keeps us on our toes as well as everything else about her and this SIOD disease.  We had a few good months with no breakthrough seizures or episodes or migraines and then last Thursday evening- wham.  She has been having them every evening since then and sometimes multiple times and Sunday evening was a doozy with a whopping, painful migraine, dizziness and extreme nausea.  We post a lot of education, informative pieces and much of it shows the good days with Emily.  This is what her life is like more often than not on any given day.  It isn't all pretty.  It isn't easy.  It isn't smooth nor is Emily ever "out of the woods".  This disease isn't going anywhere and it reminds us when life begins to become typical again.

We keep on keeping on.  That is what we do.  Today she is getting her IVIG treatment.  Today is a better day so far.  Today we continue to fight for Emily and all SIOD children.

Here's how you can hep us:

We have another  $100,000 project at Stanford ahead of us to help fund some of the neurological issues our children with SIOD experience to find out the why’s of these happenings. Can you help?  

To become a monthly donor: go to the LGF link. Click the Drop down menu once you click to donate. Easy as 1, 2 3! 

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

Connections

I help families connect with doctors,other families and researchers around the world for SIOD to build and gather strength to endure a challenging medical journey.

Recently I was able to help another mom.  Her child's battle may not be with SIOD, but that's okay.  I want to be a beacon for others out there wrestling with their own diagnosis and challenges.  Truth be told:

 👉Most people don't know nor will ever know the challenges behind not only Emily's #SIOD, but the behind the scenes, paperwork, calls, emails, and medical hoops we go through especially when traveling out of state. 

👉Most people don't know the stress of whatever is being done medically (ie surgery this time) followed by having to leave other precious family members behind is agonizing, yet something we have grown a custom to during this journey. 

👉Most people don't know what it is like to have a healthy child to guide as the special needs one takes so much time and attention.  As they grow in this medical world, learning and being exposed to more and more. Even when, as in our case, Emily's younger sister is nurturing we try our best to help her feel equally as special. Thank goodness Big Daddy Joe Mo and the Dynamic Duo Grandmas are helpful at tending to her every need!

👉I am grateful I get to help others with their journey no matter where there are at in it.

Full disclosure- I may not always be the best at getting back to you right away, but know I am doing my best each day and will get there.  Many blessings and keep believing.  We do.

#61 and more to come

 We have had many questions of concern when it comes to Emily and her eyes, especially concerning our other SIOD families and if this is part of the disease.  The specialists aren't saying it definitely is, nor are they saying it isn't.  The fact is that until now this hasn't been an issue, yet remember unfortunately not enough children live long enough to find out a lot of key issues when it comes to SIOD.  So again, Emily is teaching us about SIOD.  Since her surgery in July from the right eye detached retina things have been a bit harry.

The surgery itself went well, but not the aftermath.  Emily is still unable to see well, if much at all.  Add to that her bronchular issues, and other specialist appoinments life continues to stay busy with her medical needs.  Emily's bronchular procedure was surgery #61 and now we have found that she will have at least 2, if not more eye surgeries in the future.  One on each eye and perhaps a few more.  

We have Emily's specialists from head to toe working on her SIOD needs and working with Stanford and others like AI duPont on the EAST coast that know her to try and come up with outside of the box thinking.  We want to not only help Emily, but other kiddos with SIOD and what they may experience as they coninue to thrive.

Surgery #60- Eye

 Catch up on things since July 11 with Emily's right eye and the latest surgery on her caringbridge site blogs.  Here is the latest.

https://www.caringbridge.org/visit/emilykoesters/journal/view/id/62e2c3e58d9cce2272b0b33d

Birthdays and Blood Drives

 

We could use your help to save lives AND support the The Little Giants Foundation at our July 9 Blood Drive in honor of Emily Koesters' 19th birthday in Gretna, Nebraska at the Village Square right in front of Gretna Insurance Agency! When the blood drive meets its goals, NCBB will give money back to the Foundation for each donation given.

Please note:

1 NCBB is in Urgent Need Status for O+, O- and A+ donors (Emily is A+)

2 We need just 8 more donors to fill all of our spots.

Emily was diagnosed with a rare genetic life limiting disease at the age of 4; doctors said the life expectancy is typically 9 years. Emily continues to beat the odds thanks to research, amazing doctors AND because of generous blood and platelet donors. Keep the momentum going and Emily smiling by celebrating her 19th birthday with your blood donations. Schedule online at NCBB.ORG /search drives and use sponsor code LGF. Appointments are required! Please help spread the word. #BelieveinEmily #SIOD #Littlegiants #GiveBloodGiveHope #LetsSaveLives

Hometown Hero Blood Drive

 

On July 9, 2022 Little Giants Foundation will be hosting a blood drive in honor of Gretna's own Emily Koesters who is turning a miraculous 19. When she was diagnosed with a rare genetic life limiting disease at the age of  4, we were told she wouldn’t live longer than 9 years because of her  SIOD. Right now, only 10 children in the U.S. are documented with this rare disease. We are hosting a blood drive in conjunction with Nebraska Community Blood Bank because Emily has needed and continues to need blood and we want to help give back. We need your help to spread the word! When the blood drive meets its goals, Nebraska Community Blood Bank (NCBB) will provide money back for each unit of blood collected and it will support our Little Giants Foundation that helps raise money to research answers about SIOD. So, not only will blood donors be saving lives right here in Nebraska, they will also be helping the community.

We need your help to get those donors in the chairs!  We’ve now gotten to the point where we need to ask people to commit to helping saving lives by signing up. This will really help to ensure the blood drive goes smoothly and that people get in that day. Please see the flier on how to access an appointment.

Mental Health May

 Today I'd like to focus on our mental health.  First, let's check in:

Where do you fall on this check in chart today?

Every day can be different.  Life is challenging and likes to throw us for loops.  Here are some things that we work to put into practice to help keep us on a good mental health pathway.  Some days go better than others and we need to adjust according to what life throws at us, yet we keep on keeping on.

Make healthier choices.  Sure that cheesecake, or chips and guac and margarita may satisfy the craving and feed your soul at that moment, but how will it serve you over time? There are healthier versions of the cheesecake out there these days and even skinny margaritas.  Notice I didn't say to go without.  

Move your body.  A body in motion stays in motion.  When we move more we are freeing up our bodies to let our energies flow and do the things that need to be done.  We may not feel like getting up and doing the things, yet when we do then we obtain more energy to do the things we didn't feel like doing in the first place.  I don't know about you but I haven't ever regretted exercising.  My body may have- hahaha- but not me.

Do more of what makes you happy.  Destress.  Take the hike. Play a game.  Build a rocket.  Draw. Sing. Dance. Take a class. Volunteer.  Serve others.  Take the time to figure out what makes your heart happy and do more of that.

Sleep.  Okay- I know, I know.  Trust me I know.  There are so many studies out there on sleep and how much to get and how to get a good night's sleep and so on, so google it and make your sleep a priority.  It is challenging.  I am a mom of a special needs child and that equals no continuous sleep patterns, but I still try.

Talk it out.  Talk with friends, family and if need be, seek the help you need for you at this time.  This is a sign of strength.  Surround yourself with positive people.  Try not to get sucked into the void you are trying to climb out of.    Gracefully excuse yourself from this and encourage positivity.

Our mental health is so important and I am glad it is getting more attention so that it isn't such a stigma.  Our family has worked hard Emily's entire life to help keep her mental health optimal with all that she continuously battles.  Sometimes I know I have lost focus on my own mental health and work to take it back and be my best so I can be my best for our daughters, my family and our friends.  

If you don't have someone that you check in on, or they check in on you at least weekly- find this person(s) right now.  Please.  Your heart and mind will thank you and it could save someone, too.  We just don't know.

Blessings to you all and check back soon as we have much to celebrate this MAY, starting with tomorrow and Emily & her daddy's 14th kidney birthday!  Drink some water and toast to them.

BELIEVE