Eagle Eye?

 Here is our latest update on Emily's CaringBridge site, which this site can be reached in a link on this page anytime to get the full scope of her SIOD medical journey.

https://www.caringbridge.org/visit/emilykoesters/journal/view/id/61214d8facd8c03d7e8b45f0

Eye Surgery

 

Emily and I are heading back to the University of Iowa for her eye surgery Wednesday.  We hope to get a room with the Ronald McDonald House there, and if not they can get us a reduced rate at a nearby hotel prior to surgery and for post op.  We've been fortunate to stay at a few RMDH across the country over the years as we go to different hospitals for her SIOD rare needs.

So what is being done exactly?  Well... in simple terms, yet not the full scope- yes, she has a detached retina and it needs repaired.  She also has pigmentation scarring in both eyes.  We knew this and were being followed for it to see if it was an SIOD thing or something else. The only other SIOD patients ever to be documented with any kind of retina issues were a female sibling set documented back in 2003 and they are no longer living.      (Although the pathology of SIOD is currently not well understood, the underlying immune dysfunction of these patients may contribute to development of these ocular conditions. These findings may help to elucidate the pathophysiology of SIOD and lead to potentially new treatment options.) Ophthalmology Journal

As our new Iowa ophthalmologist told Emily, "Thank you, Emily.  I am learning something new from you today."  

So in a nutshell- the surgeons have not ever seen or worked on an SIOD kiddo, but the one surgeon is highly skilled in macular degeneration and will be overseeing her surgery.  They are hoping to repair all  of the left eye of the retinal edema and the multiple breaks in the retina, but not guaranteeing full vision repair or that the repair won't need to be done again.  They will also provide some drops for the right eye to hopefully keep it from detaching.

 

Emily continues to teach us all about SIOD, about courage, and about believing in possibilities as she defies ALL the odds stacked against her.  Now  excuse me while I do laundry, dishes and spend time with the fam before we need to divide and conquer again.  Stay tuned...

I have a feeling we're not in Nebraska anymore...

 Much has happened since this Little Giant turned 18.  Our annual birthday blood drive- saved 99 lives- our local county fair where Emily and her sister brought a prize winning black bantam cochin chicken- they named Rose and won a purple and blue ribbon with her for showmanship and cage showing.  But the most precedent thing now on the top of our list is Emily's recent medical battle that has docs baffled currently- again.  

Monday night Emily felt like she had something in her eye and things were a bit blurry.  By Tuesday evening it was so bad she could barely see out of her left eye and she was very worried, so I took her to our Children's ER in Omaha, NE.  ER docs brought in the Ophthamologist and she discovered Emily had a detached retina.  She referred her Wed to a retina specialist in Omaha the next morning.  There was also pigmentation scarring ( which we knew from a few years earlier) and it is in both eyes and the doc feels it may be a genetic thing.  So now we are in Iowa.  Emily and I  are bouncing back and forth from my folks in Cyclone territory to Hawkeye territory at the University of Iowa Hospital until the genetic eye specialists can determine best next steps which more than likely will require surgery.

Daddy Joe is holding down the fort and taking our youngest- the 5th grader to her first few days of school and Grandma J is helping as well where needed with the tween and the animals until we know more and know when we will be coming home and Emily can start her Senior year.

The Big Day is Near!

 The Big Day is Near.  Tomorrow.  July 8, 2021.  Emily will turn 18.  A magnificent day filled with so many mixed emotions.  My mind is swirling with so much that I will try to get it out so that it makes some sort of sense.

Firstly, let's chat about the turn of 18 and what that means for us with Emily since our last blog on "Navigating Transitions".  We have met with and signed a gazillion forms with the Adult Aged and Disabled Waiver/Medicaid case manager from League of Human Dignity.  Thus far this person and a few others with LOHD have been very informative and nice as well as accomodating.  Today we met again to sign a few more papers that will go into play tomorrow.  Emily will actually have a brief overlap of care this month as her birthday falls in a state of limbo for the month.

Next, today is our last day with our home health services nurse that we have had for the past 7 years.  We have celebrated with ice cream, hugs, and the knowing that we will remain friends.  As we tell Emily, now we can see her like our other HHN Emily had for 7 years before that- for FUN!  And we do!  Thank goodness Children's keeps kiddos til they are 21 and we can stay there for much of Emily's needs.

Our respite provider- Grandma- will remain the same until Emily is 19 as well, but now instead of respite it is called CHORE!  I find that name hilarious. I mean really- CHORE?  Come on DHHS- you couldn't think of more appropriate, less offensive name?

All of Emily's UNMC doc specialists are beginning to be transitioned to adult care by the age of 19.  This should be good.  New set of eyes can be good and the opportunity to train and educate more about SIOD and yet, well, I will leave it at that.  Read between the lines.

As the photo states by CHAD, Emily continues to defy her SIOD disease and inspire many through her journey.  We are grateful and blessed because of this.  As my momma heart cries tears of joy and has some tears of agony mixed between due to all we have lived and know of this disease, I still BELIEVE in a future for our Emily and for our Little Giants Foundation to help find a cure and prolong the lives of these children with SIOD.

So join us in celebrating Emily's miraculous BIRTH day by:

1. Donating/ pledging monthly what you can to https://thelittlegiantsfoundation.org/donate-index-impact 

    We are so close to  one of our 50K project research goals!  Can you help get us over the top?

2. Donating blood: Little Giants Foundation- In Gretna Blood Drive 

Online

07/10/2021
09:00 AM  - 2:00 PM
Sponsor code: LGF
Little Giants Foundation- Gretna
919 Village Square
Gretna, NE 68028

3. Register for our 8th Annual Farm Run ( in person or virtual/hybrid) at ( price increase tomorrow) :

https://ultrasignup.com/register.aspx?did=85110

 

Navigating Transitions

Holy Moly.  How can this be?  I mean I knew it was going to happen, or at least I had hoped one day it would happen and now that it is nearly here... I am freaking the freak out!  I don't want other moms and dads to freak, so I will be sharing this portion of the journey with you all in hopes to let go of some stress, help others not make the same mistakes and to offer guidance as we tread these waters.

If you aren't aware already, this princess warrior is 1 of 10 diagnosed in the USA and a little over 50 in the world with a rare genetic life limiting dwarfism disease called SIOD.  These children's life expectancies are only 9.2 years and July 8th, our Emily will be turing 18!  This is amazing and miraculous if you don't know her story yet.

Along with turning 18 comes a transition into, into, into- oh my goodness- ADULTHOOD!  

That is pretty neat, but what I want to share today is where we are at in this transition in hopes to help others in our situation with a special needs child, or for our friends entering this juncture one day.

Like I said, how can this be? And better yet, what and the hell do we do as our dependent child suddenly is treated as an adult because she has turned 18 ( and 19 here in Nebraska)?

Having friends with special needs children, I had an inside scoop to some changes that would be coming even though I blocked them out as I just hadn't fully pictured us here.  Emily's doctors even began bringing up the transition to the adult team specialists - on hospital she frequents  is 18, one is 19 and the other isn't until she turns 21.  Confused yet.  Hahaha.  Then she is on the Age and Disabled Waiver/Medicaid program which will turn to the Age and Disabled League of Human Dignity Medicaid program once she is 18. Here's where it gets tricky.

Again- I knew a change was coming, but NO ONE from her current program, probably because we literally have had 5 different case managers in the past few years, said to us, hey, your child is turning 18 in July, we need to start the transition at least 2-3 months before that.  Back track to our state of Nebraska seeing 19 year olds as adults, but not on the SSI or medicaid program.  Slow your roll- what?  See the confusion already?  So I brought of the transition to Emily's current case worker, and then when the League of Human Dignity called that they got a referral- whew- let's just say we are running short on time and hope to goodness there will not be a lapse in her care coverage, which could happen.  Even though Emily has a rare GENETIC life Limiting disease that will never change, she has to go through all of the process to deem whether or  not the government sees her as disabled.  

So where are we at now?  I have submitted the paperwork and talked to the Waiver/Medicaid people, and talk to a case manager tomorrow to get things signed, we have filled out her SSI paper work and sent it and now we wait to see if some medical team in the government who has no idea who she is will provide coverage and an income for her.

What have I learned?  As I have always done, keep track of the paperwork, make copies ( yes, they "lose" it) and date everything and write down everyone's name of with whom you talk to.  And realize we don't know what we don't know, yet hopefully have the wherewithal to ask the right kind of questions to get the answers you need for your loved one and if not, lean on those like myself who are trying to help others amidst the process.

So there you go- a bit of the back story and up to speed on where we are at in navigating the transition process to Emily becoming an adult even though she more than likely will always be with us and need special services for however longer we are blessed to have her on earth.

Hometown Hero LGF Blood Drive

In honor of Emily's 18th birthday, the Little Giants Foundation will be holding a Blood Drive on July 10th at Village Square in Gretna, Nebraska from 9 a.m. - 2 p.m.

The special thing about the Nebraska Community Blood Bank Hometown Hero Drive is that you can give back to your community in more than one way by participating. Not only are you donating blood to Nebraska residents, but money will be raised and donated to the Little Giants Foundation.

 This will be the Little Giants Foundation's fourth year being honored as the Hometown Hero and we feel beyond blessed to see members from the community come together to help make an impact on so many lives.

 We continue to fight each day by believing. Believing that each day fighting to stay alive will one day lead to a cure to Emily's rare genetic  SIOD disease. With the help of others, we might be able to raise enough money to help fund research in finding a cure.

Little Giants Farm Run

 

Registration is open for 8th annual Little Giants Farm Run!

October 10, 2021 at 4 p.m. CST

Registration is open for our 8th 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 of all ages. 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 family-friendly event including a 5k run, one-mile walk and a kid’s dash. Not only is there the run, but there will also be face painting, games and a pumpkin festival. This year, the event will take place on Sunday, October 10th at 4 p.m. The event will be held at 13714 S 84th St, Papillion, NE, 68046. (Hybrid event with CDC guidelines followed)

This run is a great activity to bring families 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=85110