Well-Deserved Recognition

We have spectacular childcare providers, and we've shared that throughout the years. We've unofficially adopted both Bri and Sigrid during the last couple years. Both boys adore these ladies, and Dave and I can't imagine life without them. 

So when AJ saw an opportunity through WisconSibs to nominate a caregiver, he nominated both Bri and Sigrid for the Sibling's Choice Award. He was ecstatic when both ladies were selected for awards!

A week before Thanksgiving we journeyed to Appleton to accept their awards, thinking it was a very information drop-in gathering. Well, it was a bit more structured and fancier than we expected with an official award presentation. We only had Bri with us as Sigrid was avoiding the last of COVID that we had running through the house (hence our masks). 

Most of our motley crew mostly smiling.

AJ and Bri both went to the stage with the leaders of WisconSibs for the awards. AJ even got asked a question and spoke to the entire audience to tell them a bit about his brother. He got a chuckle from everyone when he shared that Teddy has a kind heart and is a great brother, although he can be a pain at times. (Meanwhile I was chasing Teddy around the back of the room as he ran from place to place.)

It was really special to have both ladies recognized with plaques and to be honored for the amazing gift they are to our family. AJ was really proud, rightfully so, of them winning the awards based on his nominations, and he was excited to get a little gift of Christmas cookies to boot for nominating them!

This is Joy

 If you ever need to describe what joy, feel free to use this video as an example.

Diagnosis Day - 7 Years Later

 It's been 7 years (and 2 days) since we got the diagnosis that would change our lives: Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (which has since been refined to PIGN-CDG). Gosh, Teddy was little!

Diagnosis Day 2015

That diagnosis came after nearly 2 years of searching for answers. Every test came back normal or negative, yet the seizures continued and the developmental milestones went by the wayside.

That diagnosis changed nothing in terms of treatment for Teddy because there was no treatment (beyond standard therapies like OT, PT and speech and medications to control the seizures). Seven years later, there is still no treatment for Teddy's disorder.

What changed with diagnosis day, though, was that we slowly but surely found our small community of other PIGN-CDG families throughout the world. We celebrate the successes (however small to the outside world) of our children, and we mourn with each other every time we lose one of our children to the disorder. I've shed so many tears through the past 7 years for children I've never met in person, yet they hold a piece of my heart because they are like Teddy in so many ways.

And so, as we head into the giving season with Giving Tuesday 2 weeks away, please consider donating to the incredible research opportunity we have to hopefully find a treatment for PIGN-CDG: https://secure.givelively.org//donate/cdg-care/finding-a-treatment-for-pign-cdg/kerry-blondheim While there's no guarantee the science will work in our favor, this is the first time in 7 years that we've had any glimmer of hope for treatment.

And a huge thanks to all who've donated. If you're not in a spot to donate, please consider sharing this post with others who might.

Long Walks in the Woods

Well, we survived COVID with Teddy taking out Dave and me, in addition to himself. Thankfully Teddy weathered the virus with no complications and no seizures. Dave and I both had mild versions, especially me. And the weather was absolutely gorgeous, so we were able to take advantage of that for bike rides and walks on different trails. 

In fact, Teddy and I got in 3-5 miles walking several days in a row. We both enjoy the sunshine and warm weather, and we love to be outdoors. He seems to enjoy the trails with the woods and fields much more than some of our loops in town. 

All in all, we're very grateful things went as easily as they did. We all recovered well, and we didn't spread the nastiness to others. Thanks to all who checked in on us and offered assistance.

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!