T-Cell Deficiency and COVID-19

SIOD is a multi system progressive disorder where T cell deficiency is only one component that is compromised in these children's little bodies.

Today Daddy took Emily for her IVIG (intravenous immunoglobulin therapy) start and labs for her immune system that she gets every 21 days.

Before COVID-19 we have taken precautions all of Emily's life.  Emily was born premature and we had home precautions in place from the get go before she was even diagnosed with SIOD.  Here are our health and wellness practices that we have instilled for her entire life and depending on what virus or season of illness presented itself, we would step up our precautions accordingly:
*remote healthcare
*wash hands with soap and water for 30-40 seconds
* avoid crowds
*limit public interactions
* wipe down knobs, handles, keys, remotes, phones
*change clothes after being out in public or after school
*shower after being out in public or after school
* Lysol purses, backpacks, bags
* wipe down steering wheels and doors handles
*wear masks in public
*UV light to clean controllers, laptops, keys, phones
*take shoes off at door
*limit visitors

The CDC states that, "serious underlying medical conditions (like SIOD) are at a higher risk for more serious complications from COVID-19", and we do not take  that lightly as we have family members  and friends as well who are immune suppressed due to cancer, transplants and other health issues that qualify them without being of the older population.

Children with SIOD, and really any chronically ill child, become resistant to effective strains of defense over time as they are used to these lines of medications in their medical journeys and therefore even a cold can be detrimental to them.

Gene Reviews/NCBI has a publication with Morimoto & Boerkoel (both from Canada during our initial research) Lucke of Germany and yes, Lewis from Stanford even before he took over the SIOD research from Boerkoel, where they talk about T Cell deficiency first published in 2002 and updated in 2016.  "Immunodeficiency increases the risk of opportunistic infections such as pneumonia.  More than half of individuals with SIOD have recurrent infections with bacteria, viruses and fungi.  Infection is a common cause of death."

Read that last line again- INFECTION IS A COMMON CAUSE OF DEATH!
I have read that line for 12 years over and over again- it hasn't changed!  Emily has had many bacterial, viral and fungal infections, despite best efforts and some more serious and detrimental than others and yet somehow has come out on top each time, which is good, however; this makes her even more resistant to any lines of effective strains of defense!

So- please- do your part and STAY HOME, listen and adhere to what the experts are saying we do and WASH YOUR HANDS!  You may be fine and healthy, but the immune defenseless are not!

Top 5 Former Teacher Tips for Homebound Learning

Having an immune suppressed special needs child, this COVID19 homebound learning situation is not my first rodeo.  Also, 20 years of teaching under my belt helps out in situations such as these.  So I have put together 5 of my top tips along with a section on some resources to help us navigate the home school process that is foreign to many.

1. BREATHE:
Take a deep breath and know you are not alone in this.  You may be isolated at home, but we are in the same boat with needing to adjust and adapt to this new adventure.  I literally take deep breathes and count to 10- try it- it does work.  Invite your kids to do it as well before jumping in head first.  Anytime you or your child(ren) are feeling frustrated or uneasy, stop, and breathe.

2. STRUCTURE:
Your child(ren) are used to a routine.  Whether they like the routine or not, school is a safe place where they know what will be happening, and most likely many of us have home routines as well, or are making them now.  Now, this doesn't mean the kids need to get up at the crack of dawn to begin learning and rush to get their school time in- you all will have to decide what works best for your child(ren) because you know best.  Also- this is what a teacher does- they get familiar with each child and their learning style and do their best to adapt learning to fit as applicable.  Here is a sample of our "schedule".  Note that not every day looks exactly the same and your timing may look different- this is what we do and what works for us.   Also- I have a 16 year old - tenth grade special needs child and an 8 year old main stream 3rd grader, so I get having to mix and mesh different grade levels and sometimes providing tweaks in the type of learning they each will do.
I let my kiddos sleep and wake up on their own *( note- I wake them by mid morning if they are sleeping really well) and have them eat breakfast and get their day going with self hygiene and getting dressed then I give them a 5 minute warning til Mama's School is in Session!
a. Yoga or Meditation : to get our minds right and day going to learn (* see resources)
b. Math ( *see resources) one day computer, skills,  next day counting change in different ways and
 flip flop
c. Lunch & life skills- the kiddos help make the lunch and this can also deal with math skills with measurements and reading recipes
d. Recess- if the weather permits- we live in Nebraska so every day is different- 20 minutes of outside time, or Wii time with bowling, or obstacle course inside that they create, or inside tag
e. Art- all kinds of how to draw skills online, (*see resources) make a card for someone to send in the mail ( also language arts), computer skills on paint or 3D drawing, watercolors, put together crafts, make things out of paper, toilet paper rolls and stickers,
f. Language /English : (*see resources)  read a chapter to your pet out loud, create a story, write a letter, computer skills
g. Science; make your own hand sanitizer, make your own sanitizer wipes, experiment with cooking or baking, computer skills, watch  live ZOO channel- lesson plans available or talk about what viewing

There ya have it- what we have been doing this week and we only spend from like 11-2 or 3 depending on the day.  Then they can continue an activity, rest time, tv time, screen time, chores, etc...

3. FUN- keep it as fun as possible.  Remember to breath.  It doesn't always go smoothly and not everything do the kiddos enjoy- I have had a few eye rolls and awwws, but we talked BEFORE starting as a family about what our days would look like and the expectations.  I hope you all find some of these things in #2 enjoyable with your kiddos as well and remember to breath in patience and let out positivity.

4. RESOURCES:  1st of all- don't expect to have to come up with this all on your own!  Reach out to your schools if they haven't been in touch with you already like ours has and ask for resources and guidance and help.  Our school district is rolling out E-learning next week to assist, but this week this is what we chose to do in the interim.  Ask your churches, communities, friends and family for help as well if those are choices.  Have them send you ideas and links and guidance.
Here are some resources we are using:

mo-willems lunch doodles

https://animals.sandiegozoo.org/live-cams

https://ebookfriendly.com/free-public-domain-books-sources/

yoga videos for kids

Online Events while at home

Learning Printables

Free Scholastic Resources

5. We are in this together- you are not alone.  This can feel like a lot as we all navigate through this uncertainty, but remember we share in this, and can share what is working for us in our homes and be a part of the solution, positivity and light of kindness during this challenging time.  This is not an exhausted list and again it may or may not work for you and your family- so through trial and error we can do this- TOGETHER as to not feel alone!

 

 

You Take the Good, You Take the Bad

Some of the GOOD things about having a chronic illness is the people we get to meet and that are placed in our paths.  This past week or so has been filled with goodness- along with some not so good, but let's share the good to start.

While the grandparents were visiting from Iowa our good friend, Lyn Leach came to visit and spend time with the girls, primarily to help out Emily.  They had a great time singing together and sharing stories.

I really don't know where the last week of February went, it was busy though.  And then we sprang into March with a surprise for the girls- our friend, Jared came to visit.  He's the guy who walked across America to raise awareness and gather registrations for Bone Marrow *Be The Match* over 4 years ago and we met him one day while at an apt at UNMC, shortly after Emily had a huge set back and he walked back and stayed with us and visited her in the hospital.  We have remained friends ever since and missed seeing one another when we were on different coasts at hospitals with #SIOD issues.  We had a fantastic few days together- this time out of the hospitals!

Now to then not so good:  last night Pumpkin- Emily's bed buddy had a little accident and today we found out she has 3 broken toes and a very sore leg.  And although Emily's episodes have subsided some and turned from every day to now every few days- they are still there and not fun.

Today is infusion day and right before we went in she had an episode and then it took 4 pokes to get her started and labs drawn- no fault of theirs- Emily is a challenging poke and the vascular team was called in to help navigate with ultrasound.  It took nearly 3 hours because she kept getting so hot and about passing out- now onto a 6 hour infusion of IVIG and flush.

Never a dull moment around here!  That's okay though.  Emily is still here with us and that is what really matters.  The aunt and uncle from Iowa come this weekend- it will be nice to have them here to help out and keep the eight year old distracted.