Kidlets and Coffee

Another day in the life…

Time Flies

Time flies when you are in isolation. None of us are sick, thankfully, but we are doing everything we can to keep everyone safe. The kidlets are all very high risk of getting very ill, so we have maintained distance, stay at home, and virtual learning since all this kicked off earlier this year. My husband and I leave to get necessities, and the kidlets leave individually for doctor’s appointments and such. It is very challenging, but their lives are worth it.

LK was diagnosed with Reactive Arthritis earlier this year. She typically has flare ups when she is ill, overly tired, or stressed. However, with the recent weather changes we noticed she was waking up in pain, crying, and just overly miserable. I took her to the pediatrician to verify she didn’t injure herself somehow, but no, it’s just the cold weather. The frustrating part of this disease is the lack of real treatment. Ibuprofen and acetaminophen don’t touch it. Heating pads can help, and we use a rice sack to help soothe the pain. It is always in her knees, which is really tough when you’re a super active 5 year old. Just one more challenge she faces, and we’re still learning more about it.

LN has been doing well overall. He struggles with virtual learning due to his short attention span. It’s hard to sit in front of a computer for hours on end. Thankfully he does get the opportunities to attend virtual classes so he can see his teachers and classmates, plus every week his school does online Exploratories with the kidlets (Art, PE, Music, Spanish). It’s different each week, but he really looks forward to those classes.

LB is doing well. Attending your first year of middle school is challenging as everything is different than elementary school, and it is even more difficult when you are attending virtually. However, she powers through like the rock star she is. She’s needed her rescue inhaler more lately with everything going on, but overall she is doing well.

LE still faces daily challenges with her GI system. Thankfully we have constant contact with her medical team so we can all stay updated and adjust treatment on the fly. Medication changes, trying different combinations of over the counter meds and prescription meds, verifying what works and what doesn’t is a lot easier when you can contact the medical team as you go. She still deals with daily distention, pressure build ups, excess gas, and general misery. Her eczema has flared up as well with the cold weather, so we are trying to aggressively stay on top of that. When she has flares of eczema, it lowers her immune system and makes her more susceptible to viral and bacterial infections. It is a chain reaction that, once started, is very difficult to get on top of.

We did have to venture out with all of the kids to get their flu shots. They did a great job of keeping masks on and staying away from people. I was very impressed.

For now, we continue on the course we are on. We wear masks if we have to go out (like to the pharmacy, as most of their medications cannot be mailed and have to be mixed when we pick them up) but we avoid going out as much as possible. We are doing our best to promote the Christmas spirit, and have gone as crazy as we can with decorating. It puts us all in a better mood.

Stay safe, folks. Remember families like ours, who do not have the immune systems necessary to fight off minor illnesses, let alone major ones. Our hospitals are overwhelmed, and we are working hard to prevent any hospital stays this year. If we pull this off, it will be the first time in 11 years. But we can’t do it alone.

Remember your loved ones this holiday season. The modern age of technology has made it easier than ever to stay in touch with friends and family, take advantage of that!

Be safe, be well, and be merry!

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