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.

Fun Family Weekend

We headed to my family's farm this weekend in Colby. It's where I grew up, and I love bringing the boys there to get a taste of farm life, even though my folks haven't had their dairy cows in 15 years. We had a fantastic weekend, filled with birthday and father's day celebrations and plenty of fun.

These boys are my world! All smiles for a 4-wheeler ride!

Saturday morning we headed to a dairy breakfast, which is a Wisconsin tradition for June dairy month. A dairy breakfast is essentially breakfast served at a farm, highlighting dairy products and showcasing a farm for the general public. This dairy breakfast served pancakes, sausage, cheese curds, donut holes, milk/coffee and ice cream, which is pretty standard for a dairy breakfast. After breakfast, we watched them milking cows in a huge carousel milking parlor and rode a school bus around the farm to check out the operation. Teddy thought it all was pretty cool, especially the tractor he got to ride behind to go back to our car.

We spent Saturday afternoon playing outside, splashing in a small pool and playing with hoses, taking breaks to watch the neighbors make hay in the nearby field. AJ thought it was pretty neat to watch the huge round baler "poop out" giant bales of hay. Teddy, of course, thought the tractors were cool.

Teddy's favorite part of the weekend, though, was the golf cart rides. My grandpa has a golf cart that he uses to travel the mile between where he lives and my parents' house. Both boys love going for rides, and this was the first time that AJ really drove it by managing the steering wheel. He'd cackle like a maniac and steer as close as possible to all obstacles without trying to actually hit them. (He only managed to run over one rain gutter ...) Teddy thinks golf cart rides are the best thing in the world, and he's perfectly happy just hanging out on the golf cart when it's not moving.

Teddy's not afraid of AJ's driving. I think he's the only one though.

My favorite part of the weekend was watching my grandpa with Teddy. . It makes me so happy to watch the two of them together. Teddy thinks Grandpa's cane is the coolest thing in the world, and Gramps gets a kick out of watching Teddy play. I'm not certain how much Gramps really understands how much Teddy's syndrome will impact his development. But that doesn't matter because he loves Teddy just the way he is.

Few things make me happier than watching these two together.

Mountain Goat

If it exists, it's sole purpose is either to be climbed or mouthed. At least that's Teddy's view on things. And he's very adept at both, although I personally feel his climbing skills are a bit more impressive than chomping on everything.

For a child who cannot walk unassisted, who has low tone, who feels like you're carrying 35 pounds of Jello at times, this boy can climb. He's climbed into the trunk of my car. He's climbed onto the arm of the recliner, standing on it contemplating scaling the bookshelf until I told him no. He's climbed into every sink in our house. (He likes water a lot, so why wouldn't you climb into a sink?)

I'm not technically on the table, Mom. I'm flying like Superman!

He continues to climb across the table to retrieve what he wants, usually AJ's art supplies, toys or food. We do try to keep him off the table, both for safety and appropriate behavior, but it's a constant challenge. And needless to say, he's never too impressed when we remove him from the fun.

I've often joked that Teddy could climb Mount Everest ... and I'm not so sure that's really a joke.

Bedtime ... I don't need no stinkin' bedtime ...

The subject line was my husband's Facebook post this weekend. We went through about a week where Teddy magically went down on his own, no protest or fuss, without really being sleep trained again through the painful screaming process. And then it stopped.

Note the look of protest at the thought of bed at 10:15 p.m.

We had at least 3 nights in a row where he was up until 10 p.m. He even managed midnight one night because he's a party animal. He likes to pull open his closet doors, rifle through the diapers and see what exciting things we hide in there. (Sorry, bud, it's pretty much diapers, even though one time you found a new pair of shoes, which was a true jackpot for you!) One night he pulled about 50 wipes out of the wipe container ... see, he's just practicing his fine motor skills?

It doesn't help matters that he's finally mastered turning and opening his door handle, which is great grip strength and dexterity, but it hinders the sleep process when he escapes. I know we need to put a child door lock on his door, but I almost hate to discourage his new skill. (I hate not sleeping more, though, at least after a few nights in a row.)

The only time he's interested in movies is 9 p.m. at night.

It's Not How Fast You Run

It's not how fast you run that matters most. It's who runs with you.

Teddy and I gave the MyTEAM TRIUMPH training runs another shot this week after our weather fizzled session. I'm so glad we did because we had the opportunity to run with 3 other Captains and 4 other Angels!

Teddy tried out one of the running chairs before the run, but we ran using our jogging stroller because there were 4 Captains and 3 chairs. I was assured they have much smaller chairs that will comfortably fit Teddy for his race, and one of the Angels told me they'd try to get one down there for future training runs if they know we're coming.

It was so neat to run with this group and get to know what motivates other Angels. Not only are there Captains who are pushed in chairs, there are also captains who hand wheel themselves and others who are able-bodied runners (who at times sprint faster than their Angels expected). It was an extremely welcoming group who, simply put, gets how to interact with people with different abilities. And they understood how excited I was to snap a picture of Teddy in one of the chairs afterward! (That is one of the other Angels holding Teddy's hands ... if you know me, you know I don't wear pink as a general rule.)

I love everything about this!

Things AJ Knows

As Teddy's only brother, AJ knows a lot of things. (He doesn't know humility yet, so he'd be among the first to tell you he knows a lot.)

AJ knows how to untie shoelaces and undo velcro straps. He hasn't learned this from his own shoes. (He prefers to cram his feet in them without ever undoing the velcro straps.) He knows this because he helps me take off Teddy's braces and is now to the point where he can do it by himself.

AJ knows that Teddy is thankful for spending his days with Miss Katelyn, their wonderful sitter who happens to be a nursing student. When I asked AJ how he knew this, AJ replied that Teddy cries when Miss Katelyn leaves.

AJ knows that Teddy likes to mountain climb. When Dave asked why Teddy was trying to climb over him the other night, AJ said, "Papa, Teddy likes to mountain climb. There are no mountains, so he's pretending you are a mountain."

AJ knows that when he has a fever of unknown origin, Teddy automatically gets Tylenol. "Silly Papa. I only get medicine before bedtime. Teddy gets it during the day." (If we don't know what causes a fever in AJ, we tend to medicate Teddy as a preventive measure to minimize the possibility of a seizure.)

AJ knows that Teddy likes to reach into containers and share other people's food. AJ had to explain this fact of life to his cousin this weekend, who understandably was a bit irritated with Teddy's thievery.

AJ knows that Teddy likes to take the easy way out and eat out of people's hands rather than pick up food, if given the chance. (As he was explaining Teddy's food sharing to his cousin, AJ picked up a piece that fell and automatically let Teddy eat it from his hand.)

AJ knows that Teddy doesn't know how to floss his teeth yet, so AJ helps him out sometimes. Trust me, AJ's the only one brave enough to try flossing Teddy's teeth. I haven't seen a dentist attempt that, and they even get paid to do that!

AJ knows the way to Children's Hospital in Neenah, all of Teddy's therapists, the word therapy and so much more. He knows to hold the elevator doors for us while Teddy slowly walks onto the elevator, and he holds the doors for other people as well.

AJ knows an awful lot. I hope he knows how much Teddy adores him.