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.

Jolly Holidays

 We are blessed this holiday season and hope you all are enjoying some peace, joy and comfort this year.

We are thankful for our wonderful supporters near and far.  Much gratitude in helping us to fund SIOD research not only for Emily, but other children with this rare genetic life limiting disease now and in the future.  

We believe in Emily and a future for Little Giants Foundation.

Go online now and help us finish 2021 stronger than ever:

Have you made your year end contribution yet?  Please consider our Little Giants Foundation today !❤🐾

Do something extraordinary before 2021 ends.#SIOD #research 

🎄 It is still matching donations time through our affiliate Midlands Community Foundation. ( Donation link below)

www.thelittlegiantsfoundation.org

Migraines and Seizures and Anxiety, Oh My

 Emily has had on again, off again migraines and seizures for well over a decade!  They are so random and sometimes associated together and sometimes not.  The seizures have been very debilitating over the years.  When I say debilitating, I don't mean just tired and down and out for an afternoon or day or two, I mean full on having to relearn to walk and talk again seizures.  We have also discovered over the years that she has two types of seizures happening.  Last month Emily saw a new neurologist and we increased one of her seizure meds.  We thought it was working until last week.  So yesterday he had us increase the other seizure med she takes as well.  Emily is also going to get another brain MRI.  We shall see if this helps.  I have talks again with Dr. Lewis at Stanford, our research doctor, next week in regards to this issue.  Although we had felt alone in this for many years as far as SIOD is concerned, we unfortunately are learning that more SIOD kiddos are experiencing similar issues and they aren't always detected on EEG's.  We need to figure out how to help all of our kiddos.

We did have a nice Halloween venture out in a friend's neighborhood as we live in the country.  And I am also thankful that I am able to be home with Emily as she always has us on our toes.

I've got my EYE on you

 

While in Iowa City the tail end of last week for Emily's follow up from her eye surgery she spotted a deer in the parking lot outside of the Ronald McDonald House we stay at!

The follow up overall went well.  The good news is that the retina is still attached from this latest surgery.  That means no surgery this week.  Her left eye is damaged though and this is why she is still not able to see out of it.  We will be seeing her regular ophthalmologist in November to see if a prescription of glasses might help improve this or not.  In addition we will return in a few months to Iowa City to check on both eyes as the same pigmentation scarring is in both eyes.  For now we are all ( docs and us) chalking it up to her SIOD as we need to study further, but is the only sensible reason as of now.  Until later, Emily is to enjoy being a Senior and the holiday season ahead. 

Soon she has a myriad of doc appointments from head to toe, which is typical this time of year for her.  She is also getting her Pfizer booster vaccine Friday and is happy to do so.  We all have been flu vaccinated now as well.  Holding out for Taylor-Jo (she is 10) to be able to get her vaccine very soon.

OCTOBER OCCASIONS

 OCTOBER is flying by already.  So many occasions have been happening and keeping us on our toes.  

Not only is October Breast Cancer Awareness Month ( check those tatas all) it is also DWARFISM awareness month.  Emily has SED (spondyloepiphyseal) type of dwarfism and a rare form of that within her SIOD disease.

We had a great social night at our local Piezon's Pizzeria and were the #WECARE organization on Wednesday the 6th.

Our 8th Annual Farm Run & Festival took place the 9th and 10th and we had gorgeous weather.  We are so appreciative for our volunteers, supporters, sponsors, donors and event attendees.  I am excited to share photos that my talented ol' high school friend took for us when she gets them done!  We raised over $6,000 for #SIOD research!  That is exciting.

We also closed out our 50K cite-sequencing project with Stanford and are ready to work towards then next research project.  More to come on that in the future.  Together We Can Do Something Extraordinary!

Today Emily is getting her every 3 week IVIG infusion treatment.  Tomorrow- Iowa City bound for the one month follow up check up and imaging of her eye surgery.  She is not feeling very hopeful that this surgery took.  We are trying to stay optimistic for her, yet we just don't know.  Emily has been very worried and anxious and wants to just know already.  She truly is a warrior princess.

Enjoy a few photos and along with your pink throw on some green to show your support of little people like Emily and others as well.

Things Got A Lil Crazy...again

 

Things got a lil crazy...again.  Emily had her 57th surgery.  This one was on the same eye they tried to repair last month.  August and September have had many times of feeling anxious, sad and scared, yet we quickly turn to humor and/or gratitude to pull us through.  When in a state of gratitude it is nearly impossible to feel anything but love and joy.  

Here is a tidbit on SIOD and pediatric cancer as well for pediatric cancer awareness month:

Emily battled lymphoma twice between the ages of 5 and 8.

Pediatric Cancer Organizations in Nebraska

                                                     https://www.sammyssuperheroes.org/

  http:/www.myangelsamoungus.org

https://www.campcoholo.com/

I cannot tell you enough great things about these  organizations.  Each of them help families with children with pediatric cancer.  Each of them have been there for us since Emily was first diagnosed with cancer at the tender age of 4.  They could have been there through treatments and stopped caring or contact after that point.  They continue to be a support in many different ways from supporting our own foundation, to honoring Emily in different ways and including her sister on events. We love and appreciate our Angels Amoung Us, and cheer on our Sammy's Superheroes and embrace Camp CoHoLo for the doctors, nurses and survivor volunteers who keep our children safe and loved while enjoying life with others like them at camp.  Please find out more how similar yet different these great people are and their non profits.  We support and value them each.