From Wobbly First Steps to Finish Lines

I've talked before about myTEAM TRIUMPH (MTT) and our experiences with the amazing organization. Today was Teddy's 8th race with the group, if I'm counting correctly. As much as I would have loved to be running the half marathon ... or even running as one of Teddy's angels in the 5k ... healing my stress fracture allowed me to fully soak up the spectator experience cheering for Teddy.

Teddy in this picture is as large as he feels all the time.

It's awesome at the start of the race, as the Oshkosh 5k introduces each MTT captain by name. But it's absolutely incredible at the finish line to watch Teddy walk down the chute to cross the line with his angels holding his hands (because otherwise who knows where Teddy would end up). Everyone is cheering, people rooting for Teddy yelling things like "You're almost there!" or "Great job!"

There's two reasons that struck me today about why this is so dang special. The first is that I know some people in life will see Teddy as somehow less than other people. People will say mean things about him and to him. When he races with MTT, he's a celebrity with people cheering for him and rooting for him! He's an inspiration, not an invalid. I heard one other parent tell his son before the race, "This is all for you, buddy." As parents, we want our children to be loved, accepted and embraced for who they are. MTT gives us that opportunity.

The second is ironically it was two years ago today that we captured Teddy's first independent wobbly steps on camera. He managed to walk three steps, looking like he was completely drunk. We celebrated those steps because they confirmed what we'd always hoped but never could assume ... that Teddy would learn to walk independently. I watched that video today in amazement of how far he's come. He may still resemble a bull in a china shop most of the time and occasionally a belligerent drunk when he is tired and uncooperative. But he can walk anywhere he pleases and navigate uneven surfaces, ramps and hills. He can stop, start, fall down and get himself back up without assistance. He can even run. He's learned to jump. It's incredible the progress he's made and continues to make.

Oh, and he sat on a (fake) cow today. He was quite pleased with himself and Ms. Christina, who is his partner in those types of shenanigans.

Kids were not supposed to be on this cow. Teddy's a rebel.

Adenoids - Who Needs Them Anyways?

Teddy continued to have several ear infections throughout the past years, including one this winter where the pediatrician asked if an ENT ever evaluated his adenoids. The pediatrician said that adenoids could contribute to ear infections, constant runny nose and slight snoring ... all of which Teddy has. As soon as he said it, I vaguely remembered way back to when Teddy had the dermoid cyst removed from his nose that his ENT said something about his adenoids. I ignored it at the time since it wasn't the priority when he had a cyst that went from the tip of his nose to the lining of his brain.

But, now that those dermoid cyst surgeries were way behind us, it seemed worthwhile to explore removing his adenoids. Our logic is that whatever isn't necessary to Teddy that could contribute to illness in him should be removed. Given his high pain threshold and lack of communication skills, it's often challenging at best (impossible at worst) to know what, if anything, is medically wrong with him. 

His ENT wanted to try a long course of antibiotics first, to see if that resolved things, before considering surgery. Six weeks later, we were back again, still with a runny nose. So, she scheduled us for surgery. She would only take his adenoids. She didn't want to remove his tonsils because they weren't enlarged at all. Since she wouldn't even take his tonsils, we didn't ask her about his appendix or gall bladder. (Hey, we're serious about removing those non-essential, potentially troublesome, extra body parts.)

Surgery was April 17 at 2:30 p.m. Yep, that meant no solid food all day. That part actually went much better than we expected. We went sledding, did haircuts and showers and then headed to Milwaukee. We arrived with enough time to hang out at the mall for a bit riding escalators, which are the coolest thing ever, in Teddy's mind.

Post-op misery, but at least he got a blue gown this time.

Doctors and medical procedures are the worst things ever, in Teddy's mind, at least since his NIH visit. That meant lots of tears, screaming and escape attempts during the pre-op until the sedative finally kicked in. The surgery went perfectly fine, easy and quick. Post-op was tough, as to be expected with the anesthesia, pain and fear of medical places. We managed a few smiles before we were discharged, along with 4 popsicles. Most of those smiles were directed at my aunt, who is absolutely fantastic with Teddy and an incredible resource to our family as she lives in Milwaukee.

He laced that shoe all by himself on the drive home ... knots and all.

The drive home was better than expected with Teddy devouring food and a milkshake by the time we got to Fond du Lac. We picked up AJ from our friend's house, grateful for all the support to make life happen for our family.

It does indeed take a village, and we have an awesome village!

Seizures Suck

*Sigh*

Seizures suck. A lot. Unfortunately, despite our wishes to the contrary, it seems like seizures will always be a part of life with Teddy. The frequency and severity might change through time, but it seems it will be a matter of "when" not "if."

The latest "when" was this morning. Teddy had a seizure episode that lasted probably at least 15 minutes. I'm guessing because although the entire seizure episode was captured on the camera in his room, I can't bring myself to watching the entire duration. The seizure occurred right around the time that Teddy normally wakes up, so I was blissfully unaware it was occurring because I assumed that Teddy was just still sleeping.

When I went in his room to get him, he didn't smile or respond normally to me. He looked at me, but that was it. He was chewing on his fingers, which isn't his norm. I removed his fingers and tried my fingers in his mouth. He chewed hard. I removed my fingers, and he still kept chewing on air. I thought it was really odd, so I went to grab him a chewelry and my phone to look back on the camera. He didn't attempt to leave his room with me, which is really abnormal.

As soon as I looked at the camera, I said, "We're going to the ER." And then I questioned that decision because he wasn't actively seizing. Then I wondered if I should give him his rescue med, but again he wasn't still seizing. Do I call his neurologist? Do I call his ENT because this is likely associated to his surgery earlier this week? Do I take him to the ER?

I opted for the phone-a-friend option and called Dave at work. Dave said his heart immediately sank and stomach tied in knots. Apparently me calling any time between 7 a.m. and 4 p.m. is a really bad omen. He supported my intial thought that I should take Teddy in to at least the walk-in.

The walk-in took us to the ER, which is only the second time this year that we've gotten transferred from walk-in to ER. (Hey, at least our health insurance carrier can't accuse us of not seeking appropriate care!) The ER doctor initially shared the opinion that I should have called his neurologist but ended the visit 4 hours later by saying that she was glad we brought him in because she felt he needed the IV of fluids to help with his heart rate.

Teddy snoozed in the ER with his eyes cracked open. Never know what someone might do otherwise.

I was glad because he was where he needed to be to get the care necessary. The ER team took care of coordinating everything with both his neurologist and ENT to figure out a coordinated care plan. I still hate being in the ER, especially with all the memories from December. I hate that I get compliments from the nurse (multiple times) on my ability to hug Teddy to restrain him while drawing labs and inserting IVs. Apparently my time at NIH has made me a pro at physically restraining my child while he screams for medical procedures. Not something that makes me feel like a great parent ... but it's better than sitting in the corner feeling helpless while watching others struggle with the same task.

Apparently Teddy didn't like the recommendations I got just yesterday from his neurologist on how to gradually increase his anti-seizure medication, Keppra. (That increase was due to the seizure activity captured at NIH during the sleep study in January ... just now figured out what to do with that information.) Instead, we went from 5 ML to 8 ML daily in a single day. In fact, Teddy got 7 ML of those 8 ML within a couple hours this morning, which left him a bit moody and tired to say the least.

This also means that we won't be delaying the 24-hour inpatient EEG that we were told to schedule once his Keppra was fully increased. I was hoping to delay it until summer to avoid missing school, which was fine per the neurologist's office yesterday. Not so fine today ... even if his neurologist was OK with waiting, we're not. I'll be calling next week to get it scheduled for early May once he's been at this dose for a few weeks, which is what it takes for the levels to build up within his system. I was postponing that partially because of school and also because I wasn't in a hurry to endure the process of hooking him up for an EEG (see the screaming hysterically while we restrain him for medical procedures references above) nor was I optimistic about how well it'll go to keep him entertained and contained for that period of time. Maybe this is God's way of forcing my hand on this ... but the last time Teddy was scheduled for a 48-hour inpatient EEG, he seized uncontrollably and ended up in the ICU to avoid it. (OK, he didn't do that intentionally, but that episode did get him out of the EEG.)

He better damn well not do that again to avoid this next one.

I hate seizures.

The Time Teddy "Helped" Make Cookies

My to-do list Friday morning included baking cookies to take to my dad as part of his Christmas present. (He gets to pick a homemade treat each month.) I managed to snap a few pictures of Teddy helping me bake the cookies.

I held a caption contest with myself when I posted these pictures on Facebook. Should they be called:

• Reasons why my floor could be mopped every hour.
• Anybody want Teddy to come help you bake?
• This is why we have ants in our house in summer.
• Teddy "helped" me bake cookies.
• This is an HOUR of my life.

I ended up doing a combination of those, but without further adieu, here are some of the least blurry pictures of my helper.

I shall spread this flour I dumped onto the floor to celebrate my victory in wrestling the container from Mom.

Mom, I wasn't sure which pan you needed. I got them all out for you.

At least he's eating whole grains. And I now know he can open twisty ties. His OT will be so proud.

Perhaps he felt he was a bit messy that he should pull out fabric for me to make him an apron ...

This is his version of cleaning. His version also includes riding that little vacuum like a horse.

Swim Class Success

I know I've talked about how much Teddy enjoys the adapted aquatics class at our local YMCA. For whatever reason, the YMCA struggled to get sufficient volunteers this session, so Teddy's had a different "teacher" most weeks. But there's one young lady who has worked with him 4 or 5 times and is absolutely fantastic with him.

First of all, she's young and has the energy and strength to manhandle  or wrestle him away from the hot tub keep him safe the entire hour-long class. I feel really bad when it's one of the retired volunteers because I know I don't want to be solely responsible for Teddy in a pool for a whole hour.

Second, she's so happy. She always has a smile on her face, and she's perfectly willing to make goofy faces and sounds and play peek-a-boo with Teddy. This obviously makes her the coolest person ever ... or at least for the hour that swim class lasts.

Third, she gives Teddy more independence in the pool than I would. I would go so far as to say that I actually cringed a few times when I saw how far away she was from Teddy, which wasn't really far at all but was just out of arm's reach. But, this is a good thing for Teddy because he's still perfectly safe. (It's not like he doesn't swallow water when I'm holding onto him in the pool.) And it shows me that he can do more than I would have imagined.

That's Teddy cruising along the pool with his teacher following behind - hands off him.

Tonight I watched Teddy go hand-over-hand along the edge of the pool for probably 25 feet without anyone touching him or helping him. I saw him grab a pool noodle from the side of the pool and hold onto it by himself to start kicking toward his teacher. His teacher gives him the freedom to show off these skills where I don't have the confidence in him to even let him try.

I only imagine what he could have done in the second half of swim class if someone hadn't accidently pooped in the pool, causing an evacuation. At least Teddy wasn't that someone ... this time.

Easter Morning Shenanigans

Let's just say that Teddy was concerned it would take him extra time to find his Easter basket, so he got up early to make sure he had time to find it before 5:45 a.m. sunrise Mass.

That's the only logical explanation for him waking up at 1:50 a.m. and staying up for the day, right?

Nevermind that he didn't know he was getting an Easter basket. Or that he didn't care about looking for his basket that was right in front of him. Or that he didn't want to play with anything from his basket until he realized there was a giant chocolate rabbit, which happened around 3:20 a.m.

Think he's happy?

Now, most parents might not let their child eat a chocolate bunny at 3:25 a.m. Then again, most parents aren't awake with their child at 3:25 a.m. Nor have most parents been up for 1.5 hours with that particular child.

Those ears don't stand a chance against Teddy.

He enjoyed that bunny. He decided to start with the ears and then eat off the tail. His audience included me, Dave and Dave's mom. We spent a small portion of the night sleeping at their house to go to Mass with them. We spent a larger portion of the night playing in the basement with Teddy.

If this pattern of party all night when we're not at home continues every time we're not at home, I'm not quite sure what we'll do. (Curse and cry are givens for me, but those won't solve anything.) I'm not my best self when I get less than 4 hours of sleep. Teddy's not his best self when he only gets 6 hours of sleep, although he smiles a lot more than I do on that little sleep. We're still all a bit sleep deprived, so we're hoping for another restful night tonight.

He's lucky he's so stinkin' cute.