I get asked this quite a lot...

 I get asked this quite a lot.  

How have the hospitals changed since the pandemic?  Have they changed?  What is it like when you go there?

So- here is what I know for us in the Omaha, Nebraska area:

It has altered some depending on the severity and CDC guidelines throughout the pandemic, yet one of the biggest changes upon entering is that everyone gets screened and temperature checks and must wear a mask.  Not only are you screened upon entering- or even outside before parking, you are "screened" again at whatever department you go to.

Once inside and screened social distancing is still adhered to and we have been put into a room much quicker than usual.  (Many times we do get put into a room anyhow as Emily is immune suppressed) Also only one adult has been allowed most of the entire time with the pediatric patient and no siblings.  

Then procedures are pretty much the same, however; the staff all wear masks, eye shields and sometimes gloves and gowns depending on the situation.  There are some other changes as well, but if you are not someone who frequents a hospital you may not even notice that these things are out of the norm.

 I did take a few pics of our view as we entered one of the facilities we frequent.  At this hospital everyone parks and enters at the same location- doctors and all.  We are all in a line for screening and then you go to your designated appointments/areas where you are asked similar questions, but no temp check.

So there's the answer.  Some things are similar, the halls and waiting rooms are a bit more sparse than usual, yet some aspects are quite different and perhaps even better for all as part of the reason one goes to a clinic or hospital is because they are sick. 

This past Sunday Emily's visit to the ER made me think of another topic I will cover soon.

Transitions

 

We have an interesting series of challenges upon us.  It is new.  It is uncomfortable.  And it will happen anyway.  These obstacles are overall a good thing, however; they don't change the fact that they are unfamiliar territory for all of us as a family.  My hope is that by sharing our path we can help others along the way as we have always tried to do.

So what are these new transitions?  Transitions of care in so many areas of Emily's life due to the fact that she will be turning...18... this July!  Such a blessing.  We are beyond excited for her.  She will turn 18, which is 9 years past her life expectancy.  She will be a senior in high school.  She will also need to transition from pediatric to adult care depending on the doctors and hospitals over these next few years.  School and jobs will look different also.  Every stage has its place and many kids turning of age have their own journeys as they go off to their lives after high school.  For a special needs child with a rare genetic life limiting disease it looks even different.  One of the first transitions is starting very soon where we need to say so long to our pediatric home health nurse of the past almost 8 years and do our cares at the hospital where she can still stay with the pediatrics until she is older and we find a good adult care home health agency.  We are in no hurry for this transition, but it will come up first and quickly.

It is difficult to explain the bond one builds with our care team, especially when most have been in Emily's life anywhere from 5-14 years of her very extreme medical life.  We are excited to still be able to see our friends, like Sansa at Children's to help Emily through her pokies and labs every three weeks still.

Here are a few resources for other parents making similar transitions for their special needs child:

https://kidshealth.org/en/parents/adult-care.html 

From Nemours Children's hospital

file:///Users/admin/Downloads/AlongtheWay_YoungAdultFinal.pdf

Nebraska resources

http://www.vr.nebraska.gov/resources/pdfs/DDTransitionBooklet.pdf

                                We will share more as we go about this adventure of transitioning.-

COVID CRUSHERs

" Just give me the dang shot already!"

Emily has been saying this nearly every single day since the vaccines first rolled out and initially due to her age (17) the Pfizer vaccine was not being offered and then she was lower on the list after our current Governor of Nebraska initially denounced the disabled community.  

We are thankful that the Pfizer vaccine became offered in our area and that partly because of us advocate momma bears out there the Governor and DHHS overturned their initial announcement.  As the COVID vaccine opens up around the country for 16 year olds on up, we are also appreciative of those choosing to get vaccinated to help protect themselves and others.  Others like Emily with immune compromised systems.

Taylor-Jo has been put on two different research lists to hopefully make the cuts to test the vaccine for 8-12 year olds.  She was sad she wasn't able to get the vaccine for her sister and now is hoping she can get it.

I was vaccinated along with Emily from our old friends at Community Pharmacy (Thanks so much Kyle and Robin).  They have been working tirelessly at so many centers to protect and serve during this pandemic.  We love the name- COVID CRUSHERs and the T-shirts!  #gretnastrong

Joe got his first Pfizer vaccine yesterday and we are one step closer to cautiously, yet more safely getting back out there in the world.  Step by step.  Masks on, slow steps with advisement of Emily's doctors to get some much needed interaction.

We know all the things about why or why not to get the vaccine and we all have choices, yet Emily's plea is to consider kids like her and those unable to get the vaccine yet- do it for her, for them, for yourself.

Every 21 Days

 A Glimpse into SIOD:

Every 21 days an IV start and labs for Emily's IVIG treatment! 😐She adjusts to this routine, and some IV starts go better than others, but it still is a challenge every time because who enjoys getting poked and prodded all the time year after year?! 💉

Emily has a rare genetic life limiting dwarfism disease called Schimke Immuno- osseous Dysplasia (SIOD) and these treatments are one of many things that help keep her with us. Those suffering from immunodeficiency diseases (low T cell function)-as with #SIOD - having poor IgG levels can benefit from IVIg - a blood product derived from blood donors. Her infusions last 3 hours generally followed by another several hours of IV fluids and are monitored by a home health nurse as any type of blood transfusion can cause the body to react.😷 We appreciate our friends (of which some have been with us nearly 10 years) who help to make each time as smooth as possible. 

We believe in Emily and ALL #SIOD Little Giant Warriors teaching the world medical lessons while inspiring others through their rare disease.

I Wept During my Zoom Meeting

 I wept during my weekly chapter Centersphere zoom meeting yesterday.  I was sad for sure, yet when it was my turn to share about LGF and what we need or who would be a good referral I was overcome with the day's happenings that I had been enduring behind the scenes in addition to sharing about another child lost to SIOD.

Like the Chumbawamba song, "I get knocked down, but I get up again!  You are never gonna keep me down."  I allowed myself time to decompress overnight and this morning I got up again with renewed spirit and energy as I typically do throughout this medical journey we are on with our Emily.

For those who aren't aware, or perhaps don't know, I have become the type of woman who goes after it and figures it out along the way later.  It may not be the best advice from your latest life coach, but it has served me quite well, especially over the past decade in my 40's on multiple occasions.  Much like the time where I decided to push myself further into running and my mental game and signed up for my first half marathon a few years ago.  This is the shirt I wore to train in on my long run days and for the day of the big event.  Why?  Wearing it wrapped me in the embrace of energy of these children and their families.  I ran all 13.1 miles.  This was NOT easy for me even with nearly 5 months of training.  I really don't even like running.  I enjoy working out and health and fitness, but running wears on my, I'm rather slow, and it can be hard on my body and lungs ( I have asthma).  But- we were asking our daughter, Emily to push herself through grueling therapies after her hip reconstruction surgery and she became my biggest cheerleader and coach during this time.  She is always my inspiration and I added these children to help keep me going as well.  Most of the children are one's we "met" through our transplant, cancer, rare disease, or SIOD medical experiences.  Some children are of prior friends we had who tragically lost their children for various reasons.  I went to my closet last night to look at my shirt and realized that not only more children's lives have been lost that need to be edited and added and we have also virtually met more families of SIOD.  I also realized I need another shirt!  I have run out of room.  It isn't right.  It isn't fair.  I am particularly impacted by our SIOD children and their families since this is what Emily has and as we strive to be a beacon of hope for all through Emily's miraculous journey thus far, I get so emotionally invested in EACH and EVERY single family we are blessed to come into paths with.  My heart hurts and I get sick to my stomach EACH and EVERY time another child succumbs to SIOD, like poor little Brunette, age 3 of France who is being laid to rest today.

  I weep for each child upon diagnosis, complication and death.  I question if what I am doing, have been doing and have planned can be or ever will be enough?  Let me be clear, in my heart of hearts, I know without a doubt I am doing all I can and I know this, yet it doesn't ever seem to be fast enough to help save these children.  I am a very optimistic, idealistic type of gal as well and let me shout this loud for those in the back to hear:  I HAVE A VSION BEYOND OUR RESOURCES FOR LGF!!!!  Once more:  I HAVE A VISION BEYOND OUR CURRENT RESOURCES FOR LGF!

Please listen and hear me when I say that I BELIEVE we will raise the funding needed for SIOD research, we will continue to the beacon for families past, present and future, and we will gather the resources we desperately need to see our vision through!  How you ask?  I of course have a plan, a road map, but it will be done, it has to be done, but NOT without YOUR continued support and help.  If you want to know specifics and join in our fight please continue to follow our journey, reach out and let us know because TOGETHER WE CAN DO SOMETHING EXTRAORDINARY!

Behind the scenes I was caught up in our current Governor's state decision to take people with disabilities off of the COVID19 vaccine list.  I am not wanting to nor will I debate about politics, and this pandemic,  but if you are so inclined and would like to sign this petition if you are a Nebraska resident, we would appreciate it on behalf of our Emily and other other children and people with compromised immune systems:

http://www.arc-nebraska.org/prioritize_disability_vaccine_access?recruiter_id=5794

Thank you!  Feel free to share as well.

Believe-

Warrior SIOD mama on a mission with vision!

Emily the Mighty SIOD Warrior

 

Little Giants Foundation is not only a voice and face for those diagnosed with #SIOD like our  mighty SIOD warrior, 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. For those who have been following our journey please wear RED like our friend, Sansa at Children's Hospital where the Mighty SIOD Warrior gets her infusions. Tomorrow,  February 11th help us raise SIOD awareness for not only Emily, but all children afflicted with this life limiting disease. We want you to be an active member of our community, too. Your support 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.

Please tag us on your social media sites #believeinemily tomorrow!  We are BLESSED to know you and have your support. #blessed #believe #donate #littlegiants #warrior #princess

Emily's Nebraska Little Giants Day- WEAR RED

 Help us raise awareness for SIOD and the LIttle Giants Foundation by joining us in Wearing Red for Emily on February 11th, her governor proclaimed Nebraska Little Giants Day! Be sure to tag us on your social media sites. #SIODresearch #emilystrong #LGFnonprofit