Fourteen years ago we nearly lost our daughter...again

 Fourteen years ago we nearly lost our daughter... again.  

Today is living donor day and we had the good fortune of our Emily's daddy being her kidney match.  LIttle did we know at the time that this would not be the only life battle she would face.

It's believed there may be many more children with SIOD, yet most die from end stage renal failure, infection or stroke before diagnosis.  The journey to diagnosis can take years, and as in our case, families are battling life threatening situations and trying to "fix" that not knowing there could be some underlying disease.

Emily has been a warrior princess her entire life.  She came into this world fighting born eight weeks premature and on a ventilator.  At the age of four she had a kidney transplant from her dad and then as we thought we had that under control she got stage 3 lymphoma cancer- twice.  Her story doesn't stop there and has fought her way through life.  Her school experience is not like most wavering between hospital school, home school, and modified curriculum.    And we are at another milestone.  Some big ones.

Emily attended her Senior Prom last weekend!  She will be graduating May 15th.  Milestones for any child indeed.  Yet knowing her story- even the brief snapshot I give here- it all is miraculous.  

Last Saturday I went to pick up her wrist corsage from our favorite local florist- Linda at Town & Country Floral Gretna.  Emily has been coming to her shop for years delivering May Day baskets and they have grown quite fond of one another.  As Linda and I talked of Emily and her opportunity to attend prom and what a big deal it is for her to graduate, I told her to stop as she was going to make me cry.  She proclaimed, go ahead- cry away. I did not.  At least not at that moment.  I got in the van and was driving to our dear friend's home to help her decorate for pictures later that day and I began weeping uncontrollably.  They weren't tears of joy or pain, just a waterfall of that moment.

I wrestled with myself as how to stop before I reached my destination.  I wondered what kind of mess I would be later in the day.

Decorating for the prom pictures was the distraction I needed. I also relished in being the little birdie watching Taylor-Jo do Emily's make up and their interactions.  Everyone at the pre prom picture gathering was kind and inclusive.  The cheerfulness on Emily's face the entire time brought such satisfaction to this mama's heart.  

Joe and I drove Emily to and from each place- Hiro 88 to meet the same picture group for supper ( Joe and I ate next door and gave her meds in between stops) the Beardmore Event Center in Bellevue, for the dance, and last stop- Gretna High School for post prom.  

We had back up plans in place.  I had adult contacts at all of the places.  Some point person to watch over her.  Emily had her phone.  Everything went well.  I was on high alert all night long, yet she had a blast and made new friends along the way.  I knew when I took her into the dance and kissed her forehead and turned to talk to a staff member for a moment and to my surprise watched her saunter away to friends in the dance room that all would be okay.  I stood there unsure of what to do for a moment.  I have always been with her.  Helping her.  Guiding her.  What do I do?  I told myself- turn around and walk out.  She is happy.

Our entire family learned some things last Saturday night.  We are thankful for the experience that turned out drama free.  We know that despite all of the trauma we have all gone through we always prevail and make it through.  We also know that we can have fun in this journey and begin to let her grow.

Help us support SIOD Brain Cell Research

 Please consider helping us support SIOD brain cell research at Stanford University of Medicine.

Our children suffer from many hits to their systems and one pressing and challenging system we are currently helping to fund is one of neurological issues.

Dr. Lewis' lab will be looking at brain cells to study why these children are having unexplained, complicated episodes that may or may not appear currently on imaging.  Migraines, nausea, seizures, fatigue, the inability to speak, clicking and tremors are all experienced, yet for no real clinically captured reasons.  The study has the potential to help more than our SIOD children.  This study has the means to perhaps help others with neurological issues.  

See the below link for our latest neuro genetics pledge to raise $100,000 for this project and how you can help.

https://my.supportlpch.org/fundraiser/3756017

This picture was taken of Emily and her daddy Joe pre pandemic at one of her grand mal episodes with much imaging and recording taking place to try and capture answers that continue to go unexplained.

Money Talks

 What does twenty-five times five equal?

I don't know.

Think of it in quarters.  How many quarters does it take to make a dollar?

Four. 

Good.  Now add a quarter and what do you get?

One dollar and twenty-five cents.

Great.  Now how do we turn that into a number?

I don't get it.

It would be one hundred and twenty-five because you have $1.25.

Still don't get it.

That is okay.  We will get there.

Seems simple enough to many I am sure.  Not to a special needs child.  We have been working on money at home and with the school for years and although she has gotten better at counting money, to do it all on her own and to transfer thought processes and such is a challenge.  Counting back change?  That isn't quite there yet either. ( Not to mention this seems to be a big issue with a lot of young people.  Don't even get me started on that.)

Our eldest daughter will be graduating high school in two months.  She will then be entering the Young Adult Transition Program (YATP ).  Emily wants to work with animals and run a sweet shop with her grandma.  She also loves to sing and is quite good at it, so she is still wanting to do that as well.  

Her dad and I don't know exactly what life is going to look like for her after high school.  We do know how fortunate we are to be at this point with her.  We also want the best for her and her younger sister, as any parent does.  Quality of life has always been a top priority. 

As Emily and I were counting some of her money today that she has received from birthdays, and we went over how to add, subtract and times to figure out how much in total she has, I was again reminded of the challenges she faces and the tasks of figuring out how to allow her some independence after high school knowing that she isn't able to be on her own.  

On the one hand her dad and I are grateful she wants to still live with us anyway and feels safe in that, yet on the other hand we want her to be able to not feel she has to be confined.  She hasn't led us to believe this at all, yet it is a concern.  As other families are figuring out and finalizing what college their child will be attending next year, we are figuring out what this YATP continuation of school will look like for her.

After counting some of her funds we took in some change to the local bank.  We also exchanged a bunch of dollar bills for larger ones.  This welcomes a whole new conversation and skills.  I am so glad I am able to help her and will always be there for her to do life.

Let's Talk Self- Care

 Being a caregiver is not easy.  Whether you are caring for a friend, spouse, parent, or a child it takes a toll.

I had heard early on in Emily's diagnosis to take care of myself first so that I would have more to give for her and her needs.  It took me a very long time to figure out that these people doling out this advice weren't crazy.  So long in fact that I really only started taking care of me in the intentional way I need to these past several years.  I had mother's guilt.  I still do, yet now they are only moments or days of guilt.

I am going to provide a list of what I do currently to take care of Erin.  If this sounds selfish to you, know that I used to think the same thing.  It took me a long time to embrace this concept.  Keep in mind that I have been working on me for years and this is where I am at now.  I change what my routine is and how it looks depending on where I am at in my life.  Maybe you will find one thing from my routine that you can start doing in yours.

*I wake up before anyone else in my home.  I give GRATITUDE and write down 5-10 things I am thankful for from the previous day.  Then I get ready enough to get the little ready to take to the drop off lane at school. ( Moms you know what I mean.)

*After dropping her off I either go to the gym ( something new since the pandemic started) or come home and do yoga/pilates.  (30-45 min)

*Then it is coffee, devotional time and meditation. (30 min total)

* If I have enough time depending on the day I read for 20 minutes ( or save it for later in the day) or I take over cares for the hubster with Emily and get ready to conquer the day.

I am done by 8:30 or 9 am and then work and take care of Emily.  Again- I have figured out the amount of time I need by trial and error and then some days it all gets derailed and I am working on allowing myself the grace to pick back up and start over again the next day.  My wish is that something resonates from my self cares that you can add into your routine to help you be the best version of you today.

We are all works in progress and wonderfully and uniquely made.  Be kind to yourself and know you are not selfish- you are making yourself stronger to be an even better caregiver!

Transitions, Healthcare and More

 Waiting for a phone call...again.  Who will it be this time?  I wonder how long this person will stay?  Well, at least it is another opportunity to share who Emily is and her story.

In June of 2021 I posted a blog about Navigating Transitions.  Please go back and read it.  It tells about the start of this portion of Emily's healthcare journey transitioning to adult care and processes.  Since then she has turned 18 and is Federally seen as an adult.  She receives SSI (Social Security Income) and has moved from DHHS (Department of Health and Human Services) to LOHD (The League of Human Dignity).  We are almost reconciled and signed on officially with an adult home health care agency after months of phone calls and trying to find a fit after being released from CHHC (Children's Home Health Care).  The sad thing is that all of these agencies have had such a high turnover and then we also have her medicaid insurance, which is NTC (Nebraska Total Care) and a case manager for this as well that it seems I am constantly juggling between who knows what, who is taking the lead on Emily's case and how long will this person be around.  Their case loads are high.  Way too high.  I try to be patient, kind and receptive, yet it gets exhausting.

It seems as though with many a phone call, which is like the doctor's office calling you back, you know the drill.  Make a call.  Leave a message.  Someone from the facility calls back- hopefully the same day, you explain the situation.  They go talk to whoever they need to and say they will call you back.  Some do, some don't.  Some take way too long. Then when you do get the call back you may be left with more questions and have to play the game all over again.  My favorite responses though are:

"Well, so and so said you can just call xyz yourself and find out 123."( Oh sure, let me add that to my list and the game of phone tag.) or "So and so said you can just go online or to ABC story and get this item- it is only $$$."( If I had a dime for every time I have heard this I would have enough money to purchase said item for her special needs!)  or "Please call us anytime and we will get back to you." ( do they even realize the call goes through a series of automated instructions just to maybe, hopefully get to a person or a place to leave a message!)

There has got to be simpler solutions and a more streamlined way to help the aged and disabled in our healthcare world.  I have said this for years.  I have even tried sitting down in talks with DHHS and Senators to come to some common ground solutions.  I am not that person that complains and does nothing to try and solve the problem.  I rarely complain, even.  Yet for my sanity and for the good of the cause I am working on making my voice heard for not only our situation, but for others out there that need someone to advocate for them and with them.  I will gladly be that person and have been.

I have had friends and acquaintances ask me how they can help remove some things from my to do list or my plate before.  I so appreciate this.  I know I have been challenging in the past to help as I am a momma who things she can do it all or it is just easier to do it myself because it takes too long to instruct someone else and I could have just had it done.  HAHAHA.  I am learning though- especially being our foundation's executive director, to delegate and allow others into this closed circle I have created.  Baby steps.  

Emily will be graduating high school in 3 months and in July will turn 19.  We are so blessed.  I write these things and milestones about Emily and cannot grasp the reality of it all myself.  For all intense and purposes on paper she should not be on this earth yet and thank goodness she is!  With these next milestones come more transitions that although we are grateful for, we continue to navigate wondering each time I ask what I feel are simple questions that agencies don't have answers to only to ask them, "We cannot be the only people to ever ask these questions, why don't you have an answer?"  

I know that the Arc of Nebraska and Disability Rights of Nebraska, two agencies I follow and have been in touch with in the past and present, are working hard as well with our legislature to make a difference and we are grateful to them as well.  I am reminded when I want to go out and stomp around the capitol that even though we can do anything, we can't do everything.  My focus for now is my family, and our foundation mission and getting Emily to walk across the stage with her friends and classmates on graduation day.

SAVE THE DATES AND WEAR RED FOR SIOD FRIDAY, FEB. 11TH!

 

Show your support for Emily and #SIOD awareness this Friday, Feb 11th all day long by wearing RED and posting your pics on social media and be sure to tag us so we may give you a shout out!  Families, selfies, businesses, etc... let's paint social media RED for Nebraska Little Giant's Day honoring our only living child in Nebraska with SIOD! @littlegiantemiliy on IG, @littlegiant14 on Twitter, @believeinlittlegiants on FB.

Perpetual Pandemic

 "Count to three, please and wait for the cleaning stuff to dry, otherwise it stings."

I remember. And this looks a good one where you said the invisible vein is.  

Another pokie day.  Another infusion.  Another hospital visit.  Another day in the life of Emily on her SIOD journey.  Another day in the life of this perpetual pandemic.  Another day in the life that we are all too familiar with the precautions even pre-pandemic.

Hopkins Md states: Although being fully vaccinated greatly reduces your chance of catching or spreading the coronavirus, it doesn’t eliminate it entirely. If you are infected with the coronavirus and do not know it, a mask is very good at keeping your respiratory droplets and particles from infecting others. If you haven’t yet received your COVID-19 vaccine, wearing a mask can also help prevent germs that come from another person’s respiratory droplets from getting into your nose and mouth.

Since the coronavirus can spread through droplets and particles released into the air by speaking, singing, coughing or sneezing, masks are still a good idea in crowded indoor public places that contain a mixture of vaccinated and unvaccinated individuals.

Wearing a mask is still recommended in health care settings and other places where people around you may have risk factors for severe consequences of COVID-19. These include people over age 65 and those living with heart disease, diabetes, obesity, chronic lung disease, immunity problems or cancer.

These people being referred to our our children with SIOD who have a suppressed immune system and multi system disorders that can include renal failure, stroke and infection.  Our Emily receives IVIG every 3 weeks to try and provide some sort of protection and immunity for short windows of time.

Furthermore, Mayo Clinic provides this information: Face masks combined with other preventive measures, such as getting vaccinated, frequent hand-washing and physical distancing, can help slow the spread of the virus that causes COVID-19.

The U.S. Centers for Disease Control and Prevention (CDC) recommends masks for the general public. If you’re fully vaccinated and are in an area with a high number of new COVID-19 cases, the CDC recommends wearing a mask indoors in public and outdoors in crowded areas or when you are in close contact with unvaccinated people. People who haven’t been fully vaccinated should wear face masks indoors and outdoors where there is a high risk of COVID-19 transmission, such as crowded events or large gatherings.

The CDC says that you should wear the most protective mask possible that you'll wear regularly and that fits. Respirators such as nonsurgical N95s give the most protection. KN95s and medical masks provide the next highest level of protection. Cloth masks provide less protection. The CDC says that surgical N95 masks should be reserved for health care providers.

 Our family has been washing hands, wearing surgical masks and keeping our distance ever since Emily was born.  She entered this world emergently 8 weeks early and by age 4 had a kidney transplant from her dad and began battling one of two bouts with lymphoma cancer over the next few years.  Our personal pandemic began long before the world joined us a few years ago.

Today as we entered Children's Specialty Clinic a new sign was posted in regards to masks: Cloth masks are no longer acceptable. An adult surgical mask and children's surgical masks are provided for everyone's protection.  We are happy to oblige.  We want to keep everyone as safe as possible, including the team of people who do their best each day to care for our child.  Emily and I switched out of our specialty made cloth masks into the surgical masks and proceed to the elevator to our 3rd floor infusion center where we are greeted with the same warm hearts and kind eyes ready to provide care over the next 5-6 hours for our warrior princess.

1,2,3, little poke.  

"breath.  she's got it honey.  now they are drawing labs."

Emily, you have got to be my favorite patient to come and start an iv.  I know that sounds weird, but you hold still, are fun to talk to and tell us what you need every time. 

"Thank you", whispers the sweet subtle sounds of our  SIOD warrior princess.