Today is one of those really hard days.  Today Mackenzie has another check up with her Rheumatologist and things aren’t going well for her.  To top it off, thanks to this stupid pandemic only one parent is allowed to accompany her.  Last time we had to do the one parent visit it was for our final visit with our team at U of M and mom got to be the one to go.  Our first visit with our new Dr and team at Levine’s both parents were able to go because it was a first visit.  Now today we are back to the restricted visit and it’s dads turn.

 

Our last visit was just six weeks ago (not our normal three months) and at that time we were just two weeks into her higher dosage of Orencia and he was hoping that by today she would be showing some improvement. Unfortunately that is not the case. Over the past six weeks she has continued to deteriorate with extended periods of stiffness and pain upon waking in the morning to full out swelling and debilitating pain throughout the day.  She has been back relying on her crutches and wheelchair and is slowly beginning to withdraw from activity.

 

In so many ways this feels just like it did eight years ago when she was first diagnosed. Watching her battle this disease and the pain is heartbreaking.  Listening to her fears of what might be next steps in treatment is heartbreaking.  The inability to fix or take away her pain, the fear of the unknown, witnessing the battle she (and all JA Warriors) face makes us angry!  No child should have to live in pain (for any reason)!

 

Today we pray for a new plan that will begin to provide her some relief from the pain and for strength for all of us as we get through this visit both in person (Mackenzie and dad) and virtually (mom).

 

“They whispered to her ~ you can’t with stand the storm ๐Ÿ’™ She whispered back ~ I am the storm”

119940485_1723748391125537_648461640892135917_n.jpg

 

 

JBR-Logo-4-color_R_200x2891.jpg

We are excited to be registered for this year's Jingle Bell Run!!!! Although it iwll be a virtual event the ultimate goal will be the same...to bring about awareness, advocate, and fundraise for a cure!!!  Please consider joining our team whereever you may be or if you would like to make a donation to show your support you click this link https://events.arthritis.org/tea/23113. And as always we truly appreciate your love and support!!!! 

 

IMG_0978.jpg  IMG_0979.jpg  IMG_1051.jpg  

Who doesn't love a sale!!!!  We would love to finish August off strong with our mask sale fundrasing so we are offering a special coupon to use in our store.  If you are still in need of a mask or two, please hop on over to our Etsy store and when checking out be sure to use coupon code: WEBAUGPROMO to get 20% of your order!  As a reminder, $1.30 from every mask purchased is donated to the Arthritis Foundation to help further their mission of advocacy, support and finding a cure for arthritis!

https://www.etsy.com/shop/MackenzieSidekicks?coupon=WEBAUGPROMO

268x0w.jpg 

2020 is definitely a year of forced change for sure.  Never in our lives could we have imagined living through a World Wide Pandemic.  Yes, we've learned about them through our history studies but it honestly is another one of those things that we said "That was x amount of years ago. That won't happen now" and yet here we are living in the midst of one.

Covid-19 is definitely having a huge impact on the world as a whole from living in periods of quarentine to social distancing to wearing a face mask anytime we are in public.  The impacts of Covid-19 are also impacting our economy with so many people out of work whether by choice or by force.  This has also created a huge impact on the Arthritis Foundation as well.  With so many people out of work and money tight amazing organizations like the Arthritis Foundation also are feeling the impact greatly.

This year all of our major events have been moved to virtual events and that has definitely had a major impact on the amount of funds that are raised by these events.  In May we held our first ever Virtual Walk to Cure Arthritis.  It was definitely not the same as the excitement, the community, and the inspiration of an in person event but the Foundation did a great job of creating something with very little time that managed to bring together the entire country in one giant Walk event instead of all of our individual community events.  

As the year has progressed other events have also been moved to a virtual platform including the annual JA Conference and the JA Summer Camps.  We all know virtual isn't the ideal way to have these events but it is also better then outright cancellation of the events.  Even now as I type this blog post the Foundation is very busy reorganizing in order to be able to continue to not only provide these events we have all come to embrace and look forward to in any format and manner that they can but to also continue to reach out to those affected by arthritis and provide them a community of support along with continuing to find new and creative ways to raise funds for research towards a cure.  

I am excited to see where the Foundation is headed and to also be a part of it.  I knew even before the pandemic and our physical relocation to North Carolina that when we did move I wanted to be even more involved and help the Foundation in any way that I could.  There are lots of things in progress and I will be sharing all that I can as I can moving forward but in the mean time, please be sure to jump over to our both our Facebook page www.facebook.com/MackenziesSidekicks and our Instagram page www.instagram.com/mackenziessidekicks/and be sure to like and follow them for the most up to date information and announcements.  Also, if you or anyone you know has arthritis please be sure to visit or share the Arthritis Foundation's website at www.arthritis.org and click on the Connect Now button to begin finding help and connection with the arthritis journey.  Nobody has to fight this battle alone!  

download (1).jpeg

IMG_1017.jpg  

It's back to school for our hero!!!!  Hard to believe she is in Fifth Grade!!!!  This year definitely started out very strange.  This picture is from her first day of school.  This year she and her sister are doing a hybrid style school due to the Covid-19 pandemic.  Monday through Wednesday all of her school is done online and at home.  She has several Zoom meetings with teachers and then she has assignments to complete through out the day in ELA, Math, Science and Social Studies.  

IMG_1057.jpg   IMG_1080.JPG

Thursday was the first day back to school in person.  This was the best day of the week for our girl!  She was so excited to finally get back to the physical classroom after a 160 day "break" due to the pandemic.  This was also a big day as it was the first day in her new school in our new hometown in North Carolina.  So not only was it the first day of the school year but also the first day in the new school.  

We are very happy with the new schools procedures and handling of the current health situation.  The class sizes are very small (Mackenzie only has five kids total in her class when she is in the classroom).  The staff does a great screening before kids are even allowed into the building (parents/students must answer some health questions and the kids have their temp taken before they are allowed to get out of their car) and then once in the building there are markings for social distancing, all students and staff regardless of age/grade are required to wear masks, and they handwash numerous times through out the day.  Mackenzie said the kids have been great in following the rules/procedures and we couldn't be happier.  

This pandemic has definitly made our entire relocation to North Carolina very different from what we had imagined but we are making the very best of it even our return to school!