Easter Seals Camp - Sports and Crafts

The thing that is most fun about camp is all of the activities.

And the activities for all abilities

 

Like dodge ball.

 

 

The kids had fun throwing balls at each other.

Katheryn likes having the opportunity to try out a wheelchair too.

But she did find it difficult to throw the ball and wheel around

 

Sledge hockey is always a favorite.
Nick is so excited to do sledge hockey. But he had difficulty moving with all of the equipment on. But that was OK we could still stop for a photo-op

We were able to play a bit of a game and after a while the kids got the hand of it

Katheryn knocked herself over in her sledge and that was it. But she did want to try out Nick's chair and play hockey that way

 We also had archery.
This was another favorite of Nick's was archery.
Nick had a holder that made it easier for him to hold the arrow

 

I love this look on his face!

 

 

Katheryn got to try it as well. She didn't use anything to help, but had to crouch to get the bow back

 

 

And I got to try as well. I did get close to the mark for one of my shots.

I got Katheryn to take my picture

 

 

Similar to archery they also had sling shots with paint balls

 

 

Kyle like doing this one

 

  Katheryn liked collecting the paintballs.
 

 

For some reason I don't have any pictures, but Kyle and I also got to shoot a cross-bow. It was during the parent-only sport.

 

In the game room we got to play some pingpong

 



 

And there was soccer

 

And Nick had been excited to do bocci ball

 

But not all of the activities were sports. There was also a visit with the London Police and a they showed off their dogs

 

Kyle got to try on their training suit.
He didn't actually get attacked by any dogs.

There are often different arts and crafts to try out as well

Katheryn liked doing these (while Nick did most of the sports).
The kids don't have to all do the same thing. We could divide the kids up between  us, or the councilors could take one of them.

Katheryn made a coaster.

 Katheryn also did some science experiments

And I have no idea what she was doing here

Nick did want to do one craft. And of course he made it into Ninja Turtles

 

And I really wanted to do pottery. After multiple attempts with the pottery wheel, this is my creation. I think it is a cup?

 

 They had visits from some therapy dogs. Nick enjoyed them

And they had a dress-up activity. Katheryn had so much fun doing that!

These aren't all of the activities that they had through the camp. Some of the activities are only offered once, and some are offered different times.
The pool was also open a lot.
The kids went in every single day. So much that we were able to do some swimming with Nick without his lifejacket

And there was a fight every time when it was time to get  out

Lots and lots of fun stuff to do!

Easter Seals Camp - Campgrounds

We have been blessed with the opportunity to go to Family Easter Seals Camp again.
We went 2 years ago (without Kyle) and the kids had so much fun!
But they were young, and Nick doesn't remember it that well.

This year we were up on the hill. Which means that we are in the newer building, which was beautiful. But it also meant that we were on the top of the hill. And most things are at the bottom of the hill...

 

But it was good exercise

This is our room. We had 4 beds in 4 corners and lots of room. And a couple of big windows.

The kids were so happy with all of our space.
The first thing Nick did was go next door and make friends with the family next door. There were 3 families in our 'cabin'. And one large bathroom with stalls and showers.

Every night there is a parent-only option and the councilors. So we would get the kids ready for bed, and then the councilors would get them all charged up playing games.

Do these kids look ready for bed?

We did have a gorgeous view of the sunset.

 

And this is our view from the balcony (did I mention we had a balcony we shared with one other cabin)

The food was good. We had councilors sit with us every meal. Katheryn liked showing off

The food was good. But there were definitely some favorites

 Every morning there was a flag raising. It was before breakfast, and we are not good with getting there early. But we wanted to do the flag raising at least one day.

There is a schedule for events that are posted every day. There is a set time for the meals, but you didn't have to be there on time, you just had to leave by a certain time. There was lots of time and no need to hurry for anything

After meals usually everyone went onto the lawn and played games to pass the time.

 Or we just relaxed and explored. Katheryn loved these glass windows!

There was lots to see and explore.
And all of these wood carvings!

Woodeden has a lot of nature and forest around. There was lots of room to move around (including hills) but it was nice being so close to nature and away to technology (other than my camera phone)

More cottaging

It was our annual Phillips family reunion! 10th annual reunion, and 50 years at the cottage

There were some big events and lots of fun

Katheryn met a new friend

And really liked hanging out with all of the old kids on the water trampoline that we rented

There was mini golf set up through the while property

And a photo contest

More water trampoline

Some cousin snuggles

And a movie set-up with a couple of videos that I created to commemorate the cottage and our families. (we set up a projector and a sheet at the lake so we could all watch it outdoors.

And we had fireworks that Kyle actually enjoyed! Thanks to the headphones.

It was a great family weekend, and we got to catch up with my cousins and their kids, and aunts and uncle. First cousins, second cousins, it is great!

I look forward to this weekend every year and we always have fun.

Clinic

We are starting to get into our clinic-heavy time of the year.

Our spina bifida clinic has been divided up into individual appointments, which makes a very long day into 2 long afternoons (which are on a Friday of course).

We had our appointment with Dr Church, Nick's developmental pediatrician the first week. It went well, he is doing great (of course). We talked about Nick's MACE, which is working well, and his bladder leaking, but our urology appointment was the following week. Dr Church (who we love, and who also has spina bifida) says that since we have bowel continence, we should try what we can for urinary continence. We are close, but not there yet.

We talked about the increased bracing, which we will follow up with, with orthopedics in the fall and neurosurgery next month.

We talked about Nick's diet and fluid intake, skin integrity and any other concerns. Nick has been getting so much better with drinking water, which has helped with the overheating he used to get (and switching from oral ditropan) Nick got to steal some of my iced cap after drinking his water.

We also talked about self care and independence. At 5, almost 6 Dr Church felt that he was old enough, with enough dexterity to learn how to self-cath. So that is our goal to be ready for the start of school. Nick was very receptive to the idea and solemnly told her that he would learn. My concern was about bladder infections. But she said that we can tolerate a couple of infections for him to get his independence (and we haven't had a UTI in a long time)

That was one appointment down. Everything is good.

I wasn't able to go to the next one, the urology appointment, but Kyle was there and I gave him a list of stuff that I wanted him to ask. To get that bladder leaking figured out. Botox is on the top of my list, or maybe increasing the gelnique?

So Kyle went with Nick and we came out with a plan. The 2 treatment options involve general anesthetic. Which is more invasive than I thought it would be. The options are putting in a bulking agent, to bulk up the ureter so it doesn't leak or botox that will relax the bladder to keep it from spasming.
Both are options that do different things for the same symptom.
The other option that we have is do some tests to see why we are still getting leaking. This, of course is what we want to do. Why treat blindly when we can try to determine what the best action is.
So in the fall we are going to do a VCUG and urodynamics study and then come up with a plan after that.

We also asked about increasing the gelnique (which is a bladder relaxant) but urology said that he was at the upper end of the dosage. So that's not an option.

I'm hoping we can have the tests scheduled in September so that we can get our plan in place. And then the last part of our clinic in the fall.