Tuesday, January 31, 2017

The Day Teddy Asked to Play Outside

When it snowed yesterday, AJ begged to play outside. I let him get bundled up to play on the deck while I retrieved Teddy from not napping (story of my life). At first when Teddy came downstairs, he was content playing with AJ through the glass door, each of them licking the glass on their respective sides. While they were occupied, I took some garbage to the garage.

Teddy immediately came to me as soon as I got back in the house. He grabbed my hand and led me to the glass door. Then he put my hand on the door handle and looked up at me.

Teddy asked me, clear as day, to go play outside with AJ. He did this without saying a word. He did this without crying to get what he wanted.

How could I not comply with his request? I bundled him up and sent him out to the deck, where he dragged around a snow shovel, licked somewhat clean snow, was dragged around on a snow shovel and licked the outside of the glass door.

Look at that nice squat!

Me, I stayed inside, smiling as my boys had fun playing outside together. But I have to wonder, how many other times has Teddy asked me something or told me something that I've completely missed?

Wednesday, January 25, 2017

When's the Last Time You Called Poison Control?

Based on the title of this post alone, you know it's going to be a good one, right?

Let me share a little bit about our day, which can mostly be captured with my Facebook posts. Here's the first one, shortly after my first failed attempt to put Teddy down for a nap:

Snowman fun after baking the pizza AJ made at school. Teddy is not in the picture because he insisted on heading to the neighbor's house repeatedly. It's not his fault. They invited him over. I mean, their garage door was open, so that's like an open invite to Teddy. 
AJ was waving the snowman's arm.

I swear that an open garage door, or better worse yet, an open door on a vehicle emits this strange frequency that only Teddy can here, summoning his presence. Once our neighbors left their vehicle hatch open for an extended period, presumably drying out something inside the vehicle. Let's just say we had to go inside because we couldn't keep Teddy in our yard. Today I chased him down at least three times as he headed to the neighbor's house. Had I let him be, I'm sure he would have been happily inside playing with their little girls' toys or trying to climb into their fishing boat.

Would it be rude of me to bake all our neighbors cookies and deliver them with a request to keep their garage doors and vehicle doors shut?

Fast forward about an hour later when Teddy should be tired from playing outside. Nap time, round two. He seems to be settling down after some of his usual thumps, so I decide to get a head start baking birthday treats for Dave (and eat lunch since it's 1:30 p.m.) Maybe he fell asleep, but wait, did I just hear him? Hmm, that's a lot of thumping, but he's not upset, so we'll finish up our baking (and LEGO time for AJ). Oops, he's crying. Better go rescue him.

30 minutes later came my next Facebook post:

Good news-Teddy used his fine motor skills to open a bottle with a twisting motion. 

Bad news-he did it when he was supposed to be napping.

Worse news-it was a bottle of Tylenol from the diaper bag hanging in his closet.

Best news-Poison Control says he'll be just fine, even if the bottle was full before he got it open. (And there's a chance he ate none. He won't tell me.)

Then he was playing in the toilet twice while I was on the phone with Poison Control. Sometimes I wish he wasn't developing all these skills ... eh, I just realize he use them more appropriately.

This is the second time I've had to call Poison Control. Fortunately both were relatively minor incidents with no significant risk of harm, so instead of panicking I simply felt guilty about being a bad parent as I made the call. For some reason, I'd much rather call his pediatrician's office than Poison Control, even though I know the nurse is going to tell me to call Poison Control.

Based on comments to my Facebook post, quite a few other parents make use of this valuable resource. (Seriously, I appreciate their knowledge, calm demeanor and let's not forget their non-judgemental responses.) And I had one other person who has children with the same type of diagnosis as Teddy share a picture of her son after he drank from the toilet, imitating their family dog.

Sure, I could have posted pictures of the cupcakes I baked and just our snowman, but that doesn't tell the rest of the story that happened during the making of those events. Sometimes, folks, we just need to keep it real.

Sunday, January 22, 2017

Will He Walk?

For some reason, this past week, as we watched Teddy wander through the room, I asked my husband if there was a ever a time he believed Teddy would never walk. And he said yes, there was a period of time when he didn't believe Teddy would ever walk independently.

There were so many days at physical therapy that I just wanted to hear his therapist say, "Oh, I've seen kids with these tone issues, and he'll be able to walk independently just fine." Instead, I heard things like, "Our goal is to help Teddy learn how to use his gait trainer, so he can safely navigate his classroom when he gets to the school setting."

Still, there was one defining moment for me, and I don't recall exactly what it was ... It may have been as simple as Teddy cruising along furniture or walking holding one or two of our hands. I remember becoming confident that although it may take time, Teddy would learn to walk independently.

Now, as I watch him confidently wander around the house, never watching where he's going and moving with the grace of a drunk monkey, I'm in awe that we ever doubted he could walk. When I watch him pop up unassisted in the middle of the room, it still makes me smile because it's something he couldn't do a month and a half ago.

As I enjoy these accomplishments for him (and let's be honest ... for the long-term future of our backs and bodies as Teddy's parents), part of me wonders if speech could be the same way. The first babbling sounds we heard from Teddy were last April, right around Easter, and sounds from him have been sporadic since. He goes through periods where he is more vocal, but his babbling hasn't really progressed. School is working with Teddy to use buttons to ask for more snack or milk. We know of other children with the same diagnosis who use assistive technology to help them communicate. We know of some who use some sign language, and we have made half-hearted efforts with Teddy with signs. We also know of some children with Teddy's diagnosis who can speak at least some words.

Part of me wonders if one day I'll look back and think to myself that I was so silly for doubting Teddy could learn to speak actual words.

Then again, part of me fears that day will never come.

Sunday, January 15, 2017

Winter Hot Tub

This weekend we attended the 3rd birthday party of our niece and nephew. These are the cousins who have been the hardest to see with Teddy for a simple yet selfish reason. These cousins are 6 months younger than Teddy. Despite being premature, these spunky twins quickly began to run laps around Teddy in terms of milestones (literally). It's gotten easier as the years have continued, but those early months and years were so hard to watch them do things easily while Teddy tried so hard and still couldn't master those skills.

Anyways, enough of a troubled trip down memory lane. The point of this post is that we spent a few very fun hours at a hotel waterpark as part of their birthday party before heading back to their house for cake, ice cream and playing with other kids' toys, which are always way more fun than the endless toys we already own in our house.

All 7 cousins had so much fun playing in the water. There was a kiddie area that was perfect for entertaining most of the kids, complete with a little slide. Teddy loved the slide but collapsed back into the slide instead of sitting upright. That meant that every time he went down with his mouth wide open, he had a mouthful of water in his huge smile when you pulled him out. I just started tipping him upside down to drain out the water before plopping him back on his feet for the next round.

My favorite part, though, was the indoor/outdoor hot tub. It was about 15 degrees outside, but it was so comfortable and refreshing to be in the hot tub outside. We took all the cousins outside and even managed a quick family photo of the 4 of us. Nothing quite like being outside in your swimsuit with snow on the ground.

Thanks to my sis-in-law for standing outside barefoot in the snow to take this picture.

Thursday, January 12, 2017

The Power of Positive

As I helped Teddy off the bus this morning, his aide was calling him a goof because he kept pulling his hat off. She said that was their game on the drive home was him pulling on and off his hat to play peek-a-boo, followed with, "His laugh is adorable!"

That simple comment made my morning, along with knowing he had a good bus ride home playing with her. (I'll just say the usual aides aren't working this week, so we have some new faces both in the morning and afternoon. I'm liking this afternoon change and hoping it may be permanent.)

I also got a boost when I read Teddy's reports from his therapists at school. It looks like he worked with a different OT this week who wrote, "Teddy tried hard!" I'd much rather hear that than he wasn't the most successful with accepting his snack one piece at a time using the pincer grasp. I still understand that from your note, but thank you for framing it in a positive manner. And thank you for recognizing, "Teddy always has a smile!" He may struggle in many areas, but making people happy with his perfect smile is not one!

I also loved his note from his PT, which referenced him working hard, and said, "He stood up in the middle of the floor today - used his hands on the floor and just stood up!" The exclamation point tells me this is the first she's seen that, which isn't surprising since he's only really been doing it since the week before Christmas.

Trust me, as Teddy's mom, I fully understand where Teddy's lacking in skills. It's nice to get these reports with a touch of optimism as well, even if he needs "maximum support" in modeling the sign for "more."

Tuesday, January 10, 2017

You'll Shoot Your Eye Out!

If you've ever seen the movie A Christmas Story, then you're familiar with the line, "You'll shoot your eye out!" in response to the child's request for a Red Rider BB gun. The 9-year-old eventually ends up with his coveted request.

Where's this going? Teddy is now the proud owner of a Red Rider BB gun, a Christmas gift from his uncle. This is the same uncle who has given Teddy a really sweet buck knife and a hatchet. Let's just say Teddy gets incredibly awesome gifts, although the age appropriateness of them might be questioned. (Had this uncle made it to Green Bay prior to Christmas, there is a chance Teddy would have received throwing knives ... maybe next year.)

Relax, mom, it's fine motor skills.

Now, before you question our sanity or report us to Child Protective Services, Teddy's hatchet and buck knife are tucked safely away in his keepsake box on the top shelf of his closet. Even Teddy can't climb up there (only because there's not enough items in the bottom of his closet to give him enough height).

The BB gun is mounted safely above Teddy's window, where it won't cause any issues for either child (and the rest of our guns are secured in our gun safe). It serves as a reminder of how much Teddy's uncle cares about him ... and as he grows older will be great fine motor practice for isolating his index finger and strengthening it.

No eyes will be shot out any time soon.
Speaking of index finger, in the past two weeks, Teddy has been isolating his index finger more and more ... for the first time. This means he's poking and pointing with his index finger, leading with it to push it across the table, tablet, tent or whatever surface he finds. This is a tremendous milestone for him, considering his OT has only been working with him on it for more than 2 years (pretty much since we started OT when he was 1). Whohoo!

Wednesday, January 4, 2017

Sledding Fun

Since the forecast for tonight is -2, I thought I'd share how much fun we had this past weekend when it was so nice and warm (like 20 degrees). We spent the weekend up north celebrating Christmas and New Year's with Dave's family, as has become our tradition. One of our favorite things to do is take all the cousins sledding. The 5 oldest cousins were there, which made for plenty of fun on the sledding hill.

Think this kid loves sledding?

I love sledding with Teddy for several reasons:
  1. He loves being outside.
  2. He loves playing with snow ... and eating it.
  3. Sledding is great for his core.
  4. Sledding also gives him opportunities to work on his fine motor and speech.
But perhaps most significantly:

The sledding hill was the great equalizer for Teddy this past weekend. His challenges and delays weren't as obvious because he was one of the kids, laughing and playing in the snow. So what if he got pulled to the top of the hill every time? All the other kids tried to con us into pulling them up, too. And realistically, he would have hopped to the top if all the other children wouldn't have aimed their sleds right for him.

Teddy's cousin is intentionally blocking Teddy's path ... no mercy!

I even commented to Dave that things were easier for those moments because Teddy seemed more like the other children ... it was less work even though we were hauling 40 pounds up the hill at minimum, depending on how many other kiddos jumped in the sled.

What is it about kids eating snow?
Now, we need it to warm up about 20 degrees and dump several more inches of snow in our yard, so we can go sledding down our little hill. Wait, did I just ask for more snow?

Sunday, January 1, 2017

Happy New Year (And Memories of a Not So Happy New Years)

Happy 2017!

This past year has been the best year for our family since 2011. So despite the number of celebrity deaths, which really don't affect me at all, I'm quite content with how 2016 turned out.

To be honest, New Years is probably the most emotionally involved holiday for Dave and I, even though it's not much of a holiday. 2014 changed the meaning of New Years for our family.

We left the celebrations with Dave's family a day early, to finish his 12th day off work for Christmas break at home healing from the misery that plagued us that holiday season. As Facebook so kindly reminded me, we endured 3 bouts of stomach flu, 3 cases of pink eye, colds for every one and a sore back for Dave. We just wanted one good night's sleep and to spend the first day of the new year at home to recuperate before normal work schedules resumed.

And then Teddy has his first seizure. We had first responders visit our home for the first time ever. We headed to the ER with AJ in tow. Then Teddy had his second seizure. Dave's parents came and picked up AJ. My mom headed over to spend a few days at our house. We prayed, along with our family and friends, and were terrified. We left the ER that day with a tentative diagnosis of febrile seizures, even though Teddy was technically too young at 5.5 months to be diagnosed with them and his fever was relatively mild. We also had a referral to Children's Hospital to see a neurologist and schedule the first (of several so far) EEGs.

The last 3 years have aged us about 10 years. Two of my baby-faced boys snuggling after seizures.

We had no idea then the journey we were beginning. We were hoping it was febrile seizures that he'd outgrow. We didn't know it would take a month to get to see the neurologist and even longer for the EEG to be scheduled. We couldn't predict that it would take nearly two full years to actually get a diagnosis.

That New Year's Day is the day that our world changed. Actually, our world changed when God blessed us with Teddy, but January 1, 2014 was the first strong hint at what was to come.

Fortunately, there's been so much good through the years and so many blessings, including Teddy being seizure-free the longest he's ever been. That alone removes so much stress, fear and sheer terror from our lives ... or at least puts it in the back of our minds. Still, we remember that day in 2014 like it were yesterday. And you can be certain that all of us ate our black-eyed peas for good luck today!

(It's a Southern tradition to eat black-eyed peas for good luck to start the New Year. I hated them as a child but grew to tolerate them through the years. We skipped them a few years. We ate them January 1, 2016, and it was a good year for us. I'm not superstitious, but this is something we apparently just need to do.)