Teddy's Favorite Bedtime Buddy

Teddy has a penchant for driving his parents crazy. (Don't all children, though?) Behind that silly smile and goofy antics is a little boy who tests every possible limit, doesn't listen and wears on our patience at some point in every day. It's just life with Teddy where you love him dearly but still ...

But at bedtime, he becomes this sweet snuggler. Dave has often said it's his favorite time to spend with Teddy because he's so snuggly and sweet and not trying to dictate your every move. (I prefer early mornings when he's full of giggles, smiles and ready to rock the day.) At home, we try to have him fall asleep on his own after stories and snuggles, but at the land one of us needs to stay by him as the bunkroom isn't Teddy proofed. Evenings are the best time for fishing, so I will attempt to put Teddy to bed. However, it's very clear who he'd prefer to snuggle with to sleep. 

The other month, I tried to get Teddy to sleep, but he was absolutely hysterical. Although that's his norm for hotel rooms and new places, he generally settles down pretty easily at the land. When I finally got him to stop screaming long enough for him to actually hear me, I asked if he wanted Papa to sleep with him. He immediately signed yes. So I told him we needed to go get on the Ranger to get Papa from fishing, and he giggled and followed the directions perfectly.

All smiles because he has Papa for bedtime.

So tonight I asked if he wanted to sleep with me, and he smiled and signed yes. When I asked if he really wanted to sleep with Papa, he got very excited and signed yes even more. It's funny to watch him when we get Dave back from fishing because he immediately climbs into bed and points to where Dave should lay next to him. If I try to lay by him, he pushes me away and requests Dave to lay by him. Apparently I'm good enough to push him on walks, pull him on bike rides and do everything else, but Dave is clearly the favorite bedtime buddy.

The Wheelchair Saga: Part One

I labeled this part one since we're only 4 months into the process ... and still pending insurance approval. *Sigh*

Earlier this spring, we realized that Teddy's Kimba Kruze was well past it's useful existence for him. He's still within the weight range, but he's so lanky that he drags his feet on the ground. The seatbelt also no longer stays snug. The wheels stick a bit, even when well lubricated. We've used it a tremendous amount over the past 7 years, and it served us well. But it was time for a new one.

Because we won the Kruze, this was our first time requesting a chair for Teddy. Naively, I imagined it would be as simple as asking his caseworker because she's been able to assist with every other request we have, even if the ordering process took a bit. However, the response was that we needed to work through our insurance first. If our insurance didn't cover it, then we could explore whether the county could assist us.

So we reached out to Teddy's doctor to ask for whatever was needed to go through insurance. We were informed that Teddy hadn't been seen in more than 6 months, so they needed to physically see him. So we set up his physical, and then just a couple days before the physical we were told his appointment was being cancelled because his physical was scheduled for exactly one year from his last physical. The doctor's office wasn't sure whether insurance would cover it ... so a couple phone calls later to our insurance company and the doctor's office, and we were set to keep his appointment.

That appointment started the referral process formally in April. But, the paperwork to NuMotion, the company that would order the chair, got lost. Without knowing how long the process would take, I waited nearly a month to follow up with the doctor's office, who said everything was sent to NuMotion. I called NuMotion, and that's when I learned that the paperwork was lost. A couple phone calls later, and the paperwork was tracked down. 

That phone call is also where I learned the process entailed:

1. The initial referral from the PCP.
2. An evaluation by NuMotion's staff in conjunction with a PT or OT.
3. Review of the evaluation by the PCP.
4. Submission to both insurance companies, both of whom would need to approve it.

Let's just say that by the time all the paperwork was tracked down to actually set up the evaluation, we were already in June (and guess what, I made several more phone calls to check in and track down missing paperwork). Then it took another couple weeks to get the evaluation scheduled (which was never actually confirmed, so I just crossed my fingers and hoped for the person to show up). Then it took another couple weeks for NuMotion to get all the paperwork they needed (which required more phone calls and e-mails to follow up on paperwork that was submitted but was missing from the file).

And then, I got to make more phone calls to track down more paperwork from the PCP because that got misplaced or lost in transit (again). Finally in the first week of August everything was submitted to insurance. 

So now we wait anywhere from one to three weeks to hear if insurance approved, denied or needs more information. (Spoiler alert, we're already more than a week into that wait.) 

The best part of this whole saga is the fact that we've been told by multiple people at NuMotion that Medicaid is extremely tough to get approval for pediatric strollers, which is what the Kruze was. In fact, during phase 2, we were asked if we had alternate funding sources since it was that likely to be denied.

Oh wait, the other really stellar thing I learned during that assessment was that they had to size up the chair to last Teddy 5 years. That's right. If insurance approves a chair for Teddy, which is apparently a really big if, the same chair must fit him well and meet his needs when he is 8 as when he is 13. Well, at this point, I guess it must fit him the same when he was measured when he was 8, but he'll be 9 or 10 before they every approve it, build it and get it to us ... because kids never grow or have their needs change.

The silver lining in this horrid process is that we were able to pick up a chair in Chicago at the end of July from another PIGN-CDG family as their daughter had outgrown it. So we cleaned it up and pieced together something to work for the meantime for a lap belt. Ted is rocking the purple chair in the stylish way that only Ted can, and we're very grateful for a chair that fits him much better, doesn't allow him to constantly drag his feet and works so much better than the old one we wore to the ground.

He still looks huge in this chair, but it's mostly the angle.

Respite Camp for AJ

Last month AJ had an incredible opportunity to attend camp through WisconSibs, which is a great organization that provides resources, events and connecting activities for people who have siblings with disabilities. This group has offerings for kids age 6 and up, including for adult siblings whether things like seminars on guardianship or other topics that often are relevant for siblings. AJ has done a handful of things through the group, mostly participating in their Sibs are my Peeps contest each spring and a couple hour SibShop at the NEW Zoo this spring.

AJ in front of his yurt. So cool!

This camp was an extremely cool summer camp full of typical camp activities, plus some extra fun and just a bit of discussion about their siblings. We dropped him off Thursday and picked him up Sunday. In between, he got to be a regular kid and get a break from Teddy. Although he loves Teddy dearly, sometimes Teddy is a lot to handle. (As I type this, Teddy has been “talking” in loud screeches for the past 2 hours in the car.)

AJ got to hang out with other kids from around the state, sleeping in yurts after enjoying bonfires and s’mores every night. They did both zip lining and high ropes courses. They did a nature walk through mosquito-infested wetlands to create ecosystem jars. They got to go swimming in Lake Michigan.

AJ had such a great time and can’t wait to do camp again next year! It was such a great experience, and we’re grateful he had the chance to go!

Teddy Takes on Waterskiing

Last month Teddy had an incredible opportunity to go waterskiing. Yes, you read that correctly. There's an organization called Graceful Wakes that coordinates skiing clinics for people with disabilities. I first learned of the group in June when someone shared their clinic information, so I reached out and was told the clinic was already full (nearly a month in advance). I said we'd try again next year and don't even remember asking to be put on a wait list ... yet the week of the clinic I got an e-mail that they had a cancellation and would love to have Teddy join them.

Since Dave was off that day already, he took both boys down to Janesville, about 2 hours away, for a day of fun on the water. I heard after the first run that Teddy seemed to have fun but was a bit unsure of it, so Dave wasn't sure if he'd do a second run. Well, he did and absolutely loved it once he knew what to expect (as it was a completely new and different experience)!

Teddy was loving his ride!

They had plenty of talented volunteers assisting with every aspect, including two volunteers on skis who literally held the waterskiing chair while skiing. Ummm, I'm pretty sure I couldn't hold my own waterskiing, much less hold onto a chair while waterskiing. They made it possible for a wide range of folks to try waterskiing, with Teddy getting two turns to go.

Thanks to Graceful Wakes and all the volunteers for making this magic happen!

As much as he loved skiing, as soon as his second turn ended, he started swimming away from the chair toward a pontoon boat he spotted. Now, mind you, Teddy's ability to swim is very much a work in progress, but he definitely was moving away from the skiers toward his target. That prompted several additional volunteers to enter the water to "rescue" or perhaps "redirect" Teddy. 

Look at that joy!

AJ captured some good photographs, but the ones I'm sharing in this post are from the photographers who were in the boats to capture the smiles. And there were smiles! AJ and Teddy also got to go tubing together as well, and it was a great family fun day. 

This definitely made an impression on our family (and I'm bummed I was working and missed it). We're so looking forward to this event next year and hope to make it a family fun day!