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!

Birthday Adventures

So, this is more than a week late, but Teddy is 6!

Birthdays are a gamble with Teddy. Will they be joyful occasions, celebrating all that he's accomplished and the fact that we've been blessed with another year of life with Teddy? That's what each birthday should be because the medical research we got with his diagnosis had a prognosis of not more than 3 years for life expectancy.

The reality, though, is that sometimes birthdays are hard. Sometimes, they're a reminder that he's another year older, which means the gap between him and his peers only increases. He's now 6, and I've still never heard the words "I love you." (Trust me, he communicates that loud and clear in other ways.)

Then, there's other years, where he's struggling to sleep, so we're all frustrated and stressed, which makes the thought of a birthday party less than appealing. That was this year. But, we still had a fantastic day, and both David and Teddy got naps, which helped greatly.

For Teddy's birthday this year, we spent his actual birthday on our land riding around, checking out the scenery and making the most of the weather between storms. For 6 hours of driving in a day, we had a great time with nearly 5 hours there playing and exploring. For Teddy, riding around in vehicles is the best thing ever, so it was a pretty cool birthday.

The birthday boy doing one of his favorite things. 

We did his party a week later, and we had a bit fewer folks than normal due to trips, work schedules and life being busy. The great thing is that Teddy is excited enough for presents, but what he really loves is all the people. He was eating up all the company and the opportunity to play with his cousins. When it came time to open presents, he wanted to direct everyone else to help open his presents to make sure they were included in the fun. That's one of the things I love about him--not that he's a little dictator--but that he loves to share his joyful experiences with others.

Teddy tries our patience daily, particularly now that he's mastered escaping out the front door through two sets of locks in less than 10 seconds. But, he has such joy for life, such determination and the ability to live in the moment. There's plenty of times that I need to channel my inner Teddy because there's so much awesomeness in that little boy who's not quite so little anymore.

New Skill

Tonight the boys were playing in the basement, and I noticed Teddy wearing a running medal. I asked AJ if he helped put it on Teddy. He said he hadn't and then got all excited. "Teddy has a new skill! He learned to put on running medals. That's a new skill for him!"

Now, Teddy can put things around his neck, but he usually pulls them right off. So this was sort of new for him to leave them on for a period of time. What made me chuckle was AJ celebrating this as a new skill ... not the language you hear from most 5-year-old boys. His word choice made me laugh, but his enthusiasm for Teddy's accomplishment kept the smile on my face longer.

Party Like You've Been Seizure Free for a Year

In case you thought I was kidding about celebrating today as the anniversary of one year since Teddy's last seizures, I wasn't. We really had a party for him tonight.

One happy boy with his cupcake!

It was just a small gathering with my friend and her daughters, which was perfect. Her younger daughter plays so well with AJ, and her older daughter adores Teddy. We made homemade pizza, ate delicious cupcakes and simply spent time together.

Dollar Tree is the best for simple parties.

We also had balloons, which Teddy loves, party favors and decorations. Like I said, it's a day to celebrate, and celebrate we did.

Word of warning: never buy these whistles. They are the definition of annoying.

Today We Celebrate

Today is a good day. An amazing day. A day to celebrate.

Today marks the one year anniversary of Teddy being seizure free. Teddy's last seizures were on Father's Day on June 21, 2015. Here's my Facebook memory from a year ago: Happy father's days to all the dads, especially Mike Kassie and Dave Blondheim. I'd be lost without you guys. On a positive note, AJ drew his first picture of a person tonight-a picture of Teddy to make him feel better after he had another seizure. Right now Teddy is sleeping with ice packs under him, trying to keep the fever from spiking again and causing more seizures. Obviously Keppra isn't going to stop him from ever seizing again, not that I really thought that but it was nice to pretend.

Some children with this diagnosis have frequent, at times uncontrollable, seizures. We've been extremely fortunate that Teddy's only had seizures every couple months or so, starting when he was 5 1/2 months old. Don't be fooled by the word "only." That word describes the frequency, not the fact that each seizure episode ripped our lives apart, scared us beyond belief, at times entailed an ER trip and took a few weeks each time to ease back into normalcy. Although I'm grateful for the relative rarity of Teddy's seizures compared to what could be, in ways I think it made each episode harder because we got up our hopes that he wouldn't have more ... that he had outgrown them ... that we were safe not to worry constantly ... and then the next episode would happen and shake not only Teddy but our entire world.

This was our first ER trip for seizures on New Year's Day 2014.

We put Teddy on Keppra in May 2015 after switching neurologists to a wonderful doctor who engages Teddy and asks us each visit, "What is on your heart?" (Beyond that, rumor is he's pretty darn smart, too.) It's not that our former neurologist didn't recommend Keppra, but we never got our questions answered to the extent that we felt comfortable putting Teddy on an anti-seizure medication with potentially serious side effects. The Father's Day episode one year ago were the first, and only to date, seizures since putting Teddy on Keppra. (It was one of those two-for-one seizure specials he sometimes has. Technically his last seizure was at 1 a.m. June 22, which is why this post will go up at 2 a.m. June 22.) After that, we increased his Keppra for about a month until we couldn't stand how miserable he was. We decreased his dose just in time to enjoy Teddy's true personality again for a family vacation. Since then, we've tweaked his Keppra twice to accommodate his growth and keep him in the therapeutic range of the medicine.

But that's enough medical history. Today we celebrate.

We ignore how much more the next seizure will shake our world because we've gotten so comfortable. We don't get our hopes up that in another year Teddy might be able to wean off anti-seizure medication. We don't relive the past. We don't worry about the future. There's time enough for that on other days.

Today we eat delicious peanut butter cheesecake brownie cupcakes. (Teddy told me that's what he wanted. I read his mind. Or my mind.) Today we make homemade pizza with friends. Today we play with balloons. Today we celebrate and are grateful for this milestone.