Monday, October 29, 2012

The Pirate King

When we found out Kingsley was going to be a wheeler instead of a walker, I had a whole bunch of negative thoughts running through my head. In hindsight, there were so many things that I worried about that I really didn't need to at all. However, one of the things I *should* have gotten stressed out about is my lack of creative skill!! In my little corner of the world, kids don't have wheelchair costumes. I've only ever seen them online, but let's be honest, they are pretty cool. I decided last year that King was going to be a big shot this year and have a wheelchair costume of his own, as it would be his first year on wheels.

Brilliant, Jill. Brilliant.

I put it off for weeks and weeks. I literally had no idea how to start. We had a lot of boxes and a pirate costume and time was ticking away. The incredibly crafty, Cassie has been posting How-To instructions on her blog for making the phenomenal costumes she has made for her son over the years. Top on her lists of materials is a glue gun. I don't glue gun. I have used one before and it was messy.

I do, however, use duct tape very efficiently. So, with a couple rolls of tape and a box, I set out on my pirate ship adventure:

Step One: Get a friend who is slightly more crafty than you. My friend, Jen, agreed to help me tackle the pirate ship, which was very good because she kept me focused when I stared blankly at the mess in my TV room and wondered what in the world we should do next.

Step Two: Get a big box and draw a picture of what you want to make. I wanted a pirate ship that would fit in my van (very important!) and that would not impede the use of Kingsley's wheelchair. And if it was easily identifiable as a pirate ship, well that was just gravy.


Step Three: Measure twice... then have someone else measure and then cross your fingers and cut anyway. We started with a long box, but knowing the size of my trunk, knew we'd have to trim it down. It gave us about a foot in front and behind his wheels to work with. We cut out the bottom, then the ends so that we could have them come to a point, then taped it all together. At this point, we were using packing tape. It is forgiving enough to let you redo until you get it right.

After that came some more blind cutting as we tried to figure out how to get the box closer to the ground. We cut out space around his wheels, foot pedal and brakes, along with a hole in the top to allow the handles to go through. Next came a hole in the top for Kingsley to go through.


Step Four: Customize to fit your kid. Once we trimmed enough to make it easily slide down over his wheelchair and trimmed a hole big enough to easily put him in and out without having to dismantle anything, and made sure the brakes, handles, and wheels were all free, we stuck him in and let him wheel around a bit. Quickly, we realized we would need to trim the sides a bit so that he could better reach his wheels. Once that was done, we were set. Out came the Gorilla Tape and all edges were taped up for extra waterproofing and a seamless look... since I am not that skilled with an exacto knife or scissors and it was a bit of a hot, jagged mess. ;)


Step Five: Have your crafty brother-in-law come over and tell you how to pimp the ride. At this point in our adventure, Jen and I were about tapped out in the creativity department. Kevin, who pretty much lives at Home Depot, dropped by and was accosted and asked for input. Some of his suggestions regarding parrots and canons were a bit over our heads, but others like port holes and a crow's nest were completely doable. We hit up Home Depot and were all set. We bought 2 dowels, one thick, one thin, and made a mast out of them with duct tape of course. We cut a hole in a black bandana and slid it over for the sail. Then got a small green fruit basket for the crow's nest (out of my compost bin, not Home Depot!), construction paper (from Rachel's craft bin), and zip ties to attach it. We cut a hole in the bottom of the fruit basket so it would slide down the thicker dowel, then made a tape ring to stop it from sliding too far.


Step Six: Pimp those wheels. Finishing it up was the easiest part, surprisingly. I spray painted (something I've never done before) the boat and mast dark brown and the crow's nest black. When that dried, I cut out 6 black circles and glued them on (with a glue stick, not a gun!) for portholes. They looked rather plain, so then I added yellow rings around them. I cut an anchor out of leftover cardboard and glued that to the front with Gorilla Glue that I had leftover from some other adventure, then added a gold coin chain to the anchor with the same glue. After assembling the sail and crow's nest, I taped on my flag and we were ready to go!


It fit perfectly in my van (phew!) except for the mast, which we assembled in the parking lot of the Halloween party with the zip ties and then had to cut off to go home. My mom suggested zip tying a waterbottle to the back of his chair and then dropping the pole into that, so I'm going to test that idea out today.



I should also mention the Jolly Roger that I made for his mast:


I hadn't planned on doing anything more than the skull and bones, but when I googled to get a better idea of what one looked like, the wheelchair pirate popped up and we knew that he had to have that instead. I modified the wheel into a heart because I love 3E Love and what they represent.

Most importantly, Kingsley LOVES his pirate ship. He sailed around in that thing like a boss. It's a very light costume and the box just rests on his chair, doesn't actually attach in any way. It was WAY easier than I thought it would be, but looks quite impressive if you don't look too closely!


So there, all you uncrafty mama's out there. It is possible. ;) 

Saturday, October 27, 2012

M Argh I

Kingsley had his MRI last week and as usual, he did great. I don't know how we got so lucky, but he rocks the hospital stays. I suspect it has something to do with the fact that rules are constantly bent when he's around in the form of a lot of doting nurses, waterfalls of chocolate milk, unlimited chocolate Timbits, and an iPod that he doesn't have to share. 

Ever since his brief weekend in the hospital and his MRI, King has become obsessed with going back. The hospital is not far from our house, so when we're in the vicinity, he gets very excited. He hollers to go there, turn that way, go back, go see the doctor, go see the Cat in the Hat (there's a big stuffed one at the ER doors). I'm not sure that many kids beg and plead to go to the hospital, but that's my boy. 

We go back on Wednesday to get the results. I'm fairly confident that they won't show anything scary. Which, actually, just typing that made me really nervous about being blindsided... In any case, with his first two MRI's they called me within hours of us coming home to book surgery and that didn't happen this time. I'm taking that as a good sign. 

Wednesday, if you check your calendar, is Halloween, which is how I segue into the amount of pressure I am feeling about Kingsley's costume this year. This and this and this and this (and this and this and this) have caused me intense panic whenever anyone mentions Halloween. I stupidly decided that this was the year I would attempt a wheelchair costume for Kinger. I am not crafty, have I said that enough? My sister sucked all the crafty genes and left me with none, then she moved to the other side of the country so she can't help in these dire circumstances! Fortunately, I have a half-crafty friend and my sister's handy husband was in town. Between the three of us, we have created something that is pretty cool. Or, it will be once I finish it. :)


Argh!

Monday, October 15, 2012

Quickie

I left you all hanging!

Everything is fine. We saw Kingsley's neurosurgeon last week and she decided that the growth in his ventricles was not that severe and likely due to him growing. He is showing zero signs of a shunt failure, his shunt is all in tact and he's a happy kid. She is interested in his eye, which I now notice he's not using as much, sort of overcompensating with his right eye by turning his head everywhere to see things out of that eye. He's been referred to an ophthalmologist. And just to be sure, he's on the list for an MRI and should get in for that in the next couple of weeks.

In the meantime, he's doing great. Happy, healthy, good ol' Kingsley. :)

Our house is going on the market this week. It's been a little bit intense getting to the point where we are ready for this, so pardon my lapse. Hey! Here's a cute picture of Kingsley to make you happy:

 my mother is a cleaning freak!

Sunday, October 7, 2012

Emergency Room

Yesterday, Kingsley and I spent a lovely day in emerge. All. Day. We went in about 10:30 after taking our time getting up and ready, spending a bit of time with the girls, then we were off.

It started as a pretty quiet day in the ER. He got a bed right away, the resident came right over. He appeared to be quite baffled by King and the story I told him, as if his instinct was to label me as crazy, but that I was so convinced of it and there was that wonky eye, he had to follow through. The next doctor knew about shunts and asked all the right questions before paging neuro.

Tricky thing here is that this is our Thanksgiving long weekend, so both of the neurosurgeons who have done Kinger's big surgeries are away until Tuesday. Bad timing, buddy!

Our first trip was X-ray to check the physical structure of the shunt. It's all there, in one piece looking like it should. Phew. Neuro sent down the message that it didn't sound like shunt, but go for a CT just in case.

Hours later, we attempted a CT scan. It was King's first and it did not go well. Lie perfectly still on a bed with your head restrained? No thanks! That was about 6 hours into our visit and the first point where I almost cracked. We were so close to answers!! Fortunately, the nurses decided to give him some meds to make him sleepy.

I may have mentioned before that Kingsley is a rockstar. At this point, we had spent the whole day in emerg, not eating as much, not drinking as much, not napping, and not really going anywhere. I had 4 books, 1 car, and the iPod to keep him entertained. Kingsley, however had his wheels and his smile, which kept the nurses entertained and flocking to help out, which meant he had popsicles, bubbles, stickers, movies, and a hallway to race up and down. It wasn't a bad day.

Then he was given this sleepy med, right around shift change and the kid turned into an angry, drunk toddler. It was a bit amusing, to be honest, though not that much. He slurred, swung his arms wildly, and kept yelling about getting on his wheels and finding his own stinkin chocolate pudding since we were holding out on him. A topped up dose finally knocked him out and off to CT he went.

By this time, the ER was a very busy place. You aren't given a lot if privacy, really, given that kids are often loud and dramatic and only a curtain separates you. I kept catching myself feeling badly for the other parents... Aw, that's rough, their kid is in so much pain, that's so hard, I'm lucky King's not in pain and we're just... WAITING TO FIND OUT IF HE NEEDS ANOTHER BRAIN SURGERY. Nevermind, I win. Oi.

Angry, drunk toddler returned as the meds wore off, just in time for me to meet the Sr NS resident and find out that King's ventricles were enlarged - an indication that his shunt wasn't doing its job and that part or all of it would need replacing. He wanted Kingsley admitted and to have more tests the next day to figure out exactly what wasn't working and where.

So, here we are.

He was finally settled in his room and went to sleep just before 2am. I've had a very short sleep on a very uncomfortable chair-bed, but he's still dozing. I think today will be a sedated MRI and a shunt tap/shuntogram which I'm too tired to explain right now. I'm glad we're here, thankful in a weird way that this is 'just' his shunt, and looking forward to getting it dealt with and behind us.

Friday, October 5, 2012

Define "Worse"...

That's it!

We're cursed. Unless there is some miracle and Kingsley's eyes are doing what they are supposed to do, I will be taking him to the ER in the morning. I've just had enough of the worrying and the wondering and the second-guessing. He has too many things going on and I need to be confident that they are not all related to some bigger thing. He's seen a handful of doctors, specialists, therapists, and I've been on the phone with nurses and pestering my SB peeps online and all anyone can say is: "If it gets any worse, take him in." I don't know what 'worse' means! I've started asking them to define 'worse', because every call I make seems to be to describe something worse than before.

At the start of September he had a virus of some kind.
Followed by constipation for weeks and he was the grouchiest kid in the entire planet.
At the same time, his eyes started doing funny things.
Then, he started getting urinary issues.
And he had a tooth break through.
The constipation ended and he returned to the cheerful, funny kid he usually is - absolutely no sign of discomfort or illness
... except for the urinary stuff and the eyes.
Then, his neck got stiff and I just threw my hands up and called/emailed nearly everyone on Kingsley's list. The answer was, "If it gets worse..."
Otherwise, neurosurgery has bumped up his regular check up to this coming Wednesday.

This evening, I noticed his left eye was getting 'stuck'. It won't move left of centre.

This is new. Does this count as 'worse'?

Then his urinary issues completely resolved themselves. That's better.

I can explain (or the doctors we've talked to could explain) the cause of each individual issue on their own. I can't shake the feeling that they might be related, though.

Through this whole thing he hasn't had a fever or any other indication that there's an infection anywhere in him. He hasn't shown any of the classic signs of shunt failure... except that constipation can cause one and sudden onset of eye issues could be a symptom of one... but I'm not sure which came first: the constipation or the eyes. They were literally the same day. His gross motor and fine motor functioning has not changed.

So, now I'm done torturing everyone around me with my constant whining about not knowing what's going on with Kingsley ;) Tomorrow, there will be one of three things happening:
1. we'll find out something bad is going on inside Kingsley and find out how to deal with it and I will feel crazy for not taking him in earlier;
2. we'll find out I'm completely paranoid and he's got a bad case of ToomuchiPaditis and I'll feel crazy for wasting Kingsley's good mood at the ER; or
3. there will be a story on the news about this wild mamabear who attacked an ER resident after being told 'wait and see' for the billionth time... in which case I'll feel a little crazy for being on the news. ;)

I'm ready. Wish us luck.

In the meantime, distract yourself by looking at this gorgeous shot of King. We had a photoshoot with the very talented Stacey Hanlon yesterday and the cuteness was overwhelming.




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