Halloween Creepy Crawlies

Whelp, the creepy crawly COVID virus found us this Halloween. After 2.5 years avoiding the virus (by taking rather extreme precautions), AJ came down with COVID a month ago. We isolated him to his room, sanitized everything and came away with the rest of us healthy. Fast forward a month, and Teddy came down with COVID. 

His case came on suddenly, spiking a fever in the middle of the night. My gut instinct told me to check on him after debating for about 20 minutes. See, the tough thing with Teddy is that when he's awake at 3 a.m. and healthy, if you go in his room, he instantly thinks it's time to be up for the day and will not go back to sleep. But if he's sick, you need to check on him ... so it's like a game of Russian roulette of whether you make the right call. Given that his temp was 101.8, my gut instinct was right. 

We went right to work on the medications and trying to sooth him back to sleep, without a thought that it was COVID. When it was more of a morning time, say 5:30 a.m. and he was up and ready to play once the medicine kicked in, Dave COVID tested him. The poor kid came back positive so fast that Dave tested him a second time, thinking he had done something wrong. 

Nope, Teddy just had COVID. And by that time, he had already passed it along to Dave, who tested positive 2 days later. As of writing this, I'm still a negative Nancy, although I'm quite certain I'll be testing positive soon given the mild symptoms I have.

Trust me, we did our best to mask around Teddy, sanitize and such once we knew he was positive, but it's next to impossible given his lack of personal space, lack of comprehension, lack of personal skills (as in we get to wipe his nose or he rubs his snot on us as he flops on us - that's a favorite!) and don't forget the sneezes right into your face, even if you're wearing a mask.

The good news is that Teddy is several days in and doing well. We've worried about this for literally 2.5 years, and thankfully it's nowhere near the worst-case scenarios we imagined. (It gets old worrying about every little cough for 2.5 years, it really does.) He's hopefully past the fever stage for good and is not overly sick, although he clearly still doesn't feel well.

So we're getting lots of Teddy time, and it's interesting to see what runs through his little mind. The other day he gave Dave shoes to put on, ran and grabbed his swim bag and went to the vehicle. Dave still isn't quite sure where they were supposed to go swimming ... Today he did the same thing, except he grabbed a football. So they ended up running around with a football at an empty park.

He looks like he actually is playing football.

The worst part - aside from the worry the first day with the fever - was that Teddy missed Halloween this year. It's his favorite holiday. It's not about the candy for him, although he does indeed love candy and wouldn't let go of his bucket last year once he realized it was full of candy. What he loves the most is that he's allowed, in fact encouraged, to run up to strangers' houses. It's the best day ever for him, and we love watching him bask in his glory. So it's tough to sit out this year, but the silver lining is that he doesn't realize what he's missing. And AJ got plenty of candy to share with the entire family (and he should hopefully be safe this time around since he just had COVID). 

School Blessings

We are so fortunate to have Teddy’s 4^th grade teacher be Ms. Ellingson. You see, Ms. Ellingson is our beloved childcare provider, otherwise known as Siggy.

She was Teddy’s paraprofessional in the 2019-2020 school year while she was in college. Her college scheduled didn’t align with the paraprofessional schedule, so she switched to subbing only that spring semester. At that time, she asked if we could use childcare occasionally, and I immediately jumped at that offer before she even finished her sentence.

And then COVID happened, and she became our saving grace to get us through the rest of that virtual school year. She became truly part of the family when we saw her and not our own families. She celebrated that first COVID Thanksgiving with us, has lived with us in between her apartments and is very much family now.

Although Teddy struggles with boundaries with her at school, realistically he struggles with boundaries with everyone at school. It’s worth it, though, to get the extra insight into his school days. His regular teacher does an incredible job communicating and sending notes daily, but there’s only so much you can share in a quick note for every child. Siggy can share with us what happens in Ms. Ellingson’s class, the ways Teddy interacts with his peers, how they accept him and interact with him and his successes (and struggles).

Evidence of boundary issues at home with Siggy.

For example, we know that when Teddy is in his 4^th grade classroom for science lessons, he may start at his desk with his paraprofessional. But when he gets squirrely, he walks around the classroom with Ms. Ellingson checking out the other students’ projects with her. I think that he gets so many more opportunities to interact with the support of his paras and the tolerance of Ms. Ellingson who knows what to expect from him and his peers when they join her classroom.

We’re dang lucky. Actually, we’re blessed beyond measure in this regard.

A Pleasant Surprise

Several weeks ago, we received a denial from our health insurance company for Teddy’s adapted stroller. We started this process back in March and had to jump through multiple hurdles to even submit the request to both our insurance company and Medicaid, as Teddy is covered by both.

Back then, we were told it would be unlikely to get approval from Medicaid because they are very reluctant to approve strollers because they are more expensive than traditional wheelchairs. Generally speaking, Medicaid is the harder one to get approvals. My least favorite thing about dual coverage is that for all therapies both insurance companies must approve the services … and we get the lesser amount of visits that is approved.

Anyways, I was quite surprised last week to get a voicemail that Teddy’s stroller was approved. I was certain that when United Healthcare denied the stroller that we were out of luck. When I spoke to the lady, she indicated that Medicaid had approved it. I commented that I was expecting it to be denied by Medicaid, so I was surprised. She said, “Well, thank goodness for Medicaid.” I responded that I bet she didn’t often get to say that. She laughed and said that it felt weird to even say that.

So, we’re tentatively set with a delivery date of January 6—so we are celebrating the Epiphany with a much-needed chair next year!

Shared Sorrow

A week ago, we lost one of the children in our PIGN group. It's odd, in ways, to have such a visceral reaction to the death of someone you've never met. Yet I know the other PIGN families feel the same way. We love and care for each of the children in our community because we have a connection that spans language differences, countries and cultural differences. There are literally families around the world grieving and praying for this family.

Her death hit me especially hard because this little girl is right around Teddy's age. They had the same wonderful smile when we first met this family virtually. Yet she was far more severely affected, and the seizures caused such regression for her. Her family loved her fiercely, prayed for wisdom to make the best decisions for her and did all they could to ensure she had the best quality of life possible.

What amazed me, time and again, was this family chose to embrace this diagnosis. They adopted their sweet daughter, not knowing her diagnosis but knowing full well that her life would be like a rose ... beautiful yet painful. As much as I love Teddy, and I do, I can't imagine choosing the challenges that come with the blessings. And, yes, there's so much joy, connection and grace that we'd miss, so I'm glad God knew best when he blessed us with Teddy.

Teddy is currently quite healthy, yet there's never any guarantee with these children with PIGN. Although he could have a medical emergency, and we fear seizures the most, the reality is that his greatest threat is his lack of safety awareness and love of all things dangerous. It's no secret his guardian angels get quite the workout. (Yes, I said angels. There's no way that child doesn't have multiple angels keeping him as safe as he is.)

There's really no point to this, other than sharing our grief. We all know the saying that no parent should bury their child. The unfortunate reality is that a disproportionate number of parents do bury their PIGN children. There is no cure, and there's no treatment. 

So, we shall continue to support one another. And we will continue to fundraise for exploratory treatment in hopes that we, collectively, can give exactly that to one another ... hope that we will stop burying our children. If you want to make a donation, you can do so here: CDG CARE (givelively.org)