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.