Wednesday, September 25, 2013

I Changed My Mind

This is another one of those posts where I use big words and talk about that stuff no one likes to talk (or read) about. So... Last warning here...

3...

2...

1...

Alright, well after complaining to an innocent neuro resident who asked the wrong question when I was a bit grouchy, I ended up getting a referral and appointment with the surgeon who would do Kingsley's cecostomy. I met with the surgeon yesterday. She examined Kingsley. She answered all my question. She asked the right history questions. These finer details really seem like obvious things, don't they? *sigh* 

It was a great consultation and in the end, I decided Kingsley is not going to be getting a cecostomy, at least not now. Some of the things that changed my mind are:

1. Proximity to the shunt line. King's shunt tubing ends very close to where the cecostomy would be. This could potentially cause contamination issues, at least while healing. An option would be to move the shunt line, but I absolutely hate the thought of touching the shunt and jinxing the perfect 3 years, 8 months and 1 week we've had with it so far. Don't mess with magic. 

2. You 'can't' have a cecostomy and a mitrofanoff. Whether it's truly anatomically impossible or just flat out difficult, I wasn't clear. She drew pictures. Anatomy is not my forte. Regardless, this seems to explain why people pair the mitro and MACE. At this point, we don't imagine Kinger will have a mitro, but I'm not ready to rule it out as an option before he's managing his needs on his own and we get a better idea of what is/not possible. 

3. Enema's. Finally. Finally, I had someone equally mistified by everyone's avoidance of the topic. She saw no reason why they wouldn't work for King and said that the very reason he couldn't be treated as a typical GI kid was the same reason these could be good for him... Something everywhere else in the world has figured out except our area, apparently. I wanted to give these a try before surgical options, but was given blank stares and brush-offs at every turn. Now, I'm going to do it! YouTube, here I come! (That sounds terrifying, doesn't it? LOL!) 

 She also wants to rule out one thing (with a long name I've forgotten) before persuing surgical options, so she's going to do a wee biopsy while he's under for his ortho surgery next month. We will have that knowledge in case we change our minds back. 

That's it. We have a follow up with the GI on Monday and then the new adventure will begin. Wish me luck! 

Sunday, September 22, 2013

Six Questions

I was tagged by Mary Evelyn over at What Do You Do Dear, which means that I have no choice but to answer six questions about myself, because her and her little boy Simeon are so cute and I would hate to see them cry. No one wants to be the reason a little boy is crying. And Cassie did it, so that means all the cool kids are involved. [insert sheep noises]

Here are my six.

1. Is this how you imagined your life would be?

Yes, exactly. Only in the sense that I never really imagined what life would be. Thinking too far ahead gives me anxiety, so I had vague plans about having a partner (but no dream wedding plans whatsoever), I definitely wanted kids, and assumed I'd be brilliantly educated and working with children with special needs of some kind. So, check, check, check, and check. Yep, livin' the dream! ;)


2. What's your drink of choice when out with girlfriends?

I almost feel like I should act like this doesn't happen that often, but... I do really like white wine. Pinot is my preference, but I won't turn down a gross bar white. I prefer to think of it as not being pretentious. I also like Pomtini's. And Palm Bay's.

3. What hobbies do you have that you don't mention in your blog?

This is dreadfully boring, which is probably why I don't mention it in my blog. I like to read, but I go in spurts with it. I love yoga, but sadly don't do enough of it. I took up running, then soccer which ended both my running and my soccer days. Now I've gone back to swimming, which I haven't done in about 15 years but turns out I'm still pretty good at. I also spend a lot of time online reading blogs, research articles (aka Facebook links), and self improvement websites (aka Pinterest). There is also the occasional Mensa-level, brain challenge (aka Candy Crush).

4. Name one thing about yourself that has surprised you.

I don't have control over my facial expressions. If I'm not making eye contact with you it's because I'm thinking something I don't want you to know and so I'm hiding it. This was awful when I was working and was something I would constantly be working on. Dead pan, non-judgmental expressions are hard. Shock. Horror. Amusement. Anger. Disbelief. Confusion. I used to think I was good at this, but turns out I'm not. At least I know now and can try to hide it.

5. How did your blog come about?

OK, so total giveaway question. When I was pregnant with Kingsley we read a lot of blogs and Jeff told me I should start one also. I didn't actually start four years ago, I started after he was born and then back dated stuff I had written in other places. Scandalous.

6. If money were no issue, I'd purchase...

Holy blaze, there's a lot of things I would purchase. I'd do that third-wish-for-more-wishes thing and purchase a huge, jackpot-winning lottery ticket. But if money were no issue, perhaps I would have already won the lotto and this would be overkill. Is it wrong to say a Cure? I'm not sure what for though. Can you purchase a long and happy life for yourself and your family? That's what I'd buy.

OK, now it's your turn. I'm supposed to tag people and taunt them with threats to continue the trend, so Kristin, Amanda, Laura, you're up!

Sunday, September 15, 2013

If I Had Known

If I had known what life was going to be like right now, four years after we were told about Kingsley's diagnosis, I wonder if I would have reacted differently. Would I have gotten so upset if I knew how much he would laugh? If I had known how little his sisters would care about any of it, would I have worried so much? If I had known about the surgeries and the wheelchair, would it have made me feel worse? Maybe the way he loves to snuggle and his incredible independence would have negated some of the ache.

Jeff said today that this wasn't the kind of anniversary he remembered. I told him it's not the kind of anniversary I can forget.


But if I had known about how strong he hugs;

about how sweet his breath still smells, even though he's not a baby anymore;

about how funny he thinks he is;

about how much attitude he can give you when he's mad;

about how sweet his little voice is;

about how much he loves being read to;

about how much he loves trains and buses and trucks;

about how deep his belly laugh is;

about how he knows everything a 3 year old is supposed to know;

about how our life is still pretty awesome;

about how much we don't care about his wheelchair or any of it.


If we had known how much we would love him, anyway, in spite of it, because of it, regardless of it, not thinking about it, not caring about it, when we're immersed in it, when we don't even think about it... I think it would have been easier. It was easy to look at those doctors and tell them we didn't care, to walk out of there, to not look back. It was not easy to keep breathing after that. Had I known, it would've been.

Sunday, September 8, 2013

The Bog

In my search to find places I can take all three kids to hang out, my friend recommended the Sifton Bog. I've been there exactly once in my life and it was with a client way pre-kids. I had completely forgotten about this little gem!

It was a nice, sunny day today and we had nothing to do, so I dragged the kids into the van and off we went. Let me tell you, it was a hard sell. When I explained it, Rachel and Cordelia kept repeating: "But that's it?? Just walking? Nothing else? But what else do we do there? That's it?..." and on and on.

The Bog is basically just a boardwalk. It starts with a stretch of gravel, which was well groved and impossible for King to push himself along. Short trip, then it was wood planks.



It's nice, even planks, very easy for Kingsley to go down. The only trouble was that it dropped off on either side, as in - one wrong wheel and King would've face planted down a foot or so into the dirt and trees. I didn't worry about the girls, but Kingsley loves to watch his wheels light up when he goes very fast (his preferred speed) and that means he doesn't look where he's going. I just held his handle the whole walk and it was all fine.

The boardwalk leads to:


There were a bunch of tween-ish boys when we got there, which ended up being awesome. They had nets and were getting right in where they shouldn't have been (so glad I'm not their mother!) pulling out turtles, tadpoles, and frogs and attracting fish for my kids to watch.


All three were in heaven. We stayed on that dock for nearly an hour, just watching and exploring.


I didn't get any pictures of Kingsley because I either had a death grip on his wheelchair to make sure he didn't wheel himself over the edge or later crawl over the edge when he was lying on the dock, dangling over so he could play with the water.

I will admit, I am not a fan of all of natures creatures. They're all fine from a distance, so it took a lot of effort not to shudder and run away when these boys were running over with turtles and frogs to show Kingsley. At one point, two dragonflies landed on my shirt. I know, dragonflies are all cool and pretty and whatever, but seriously, it took all of my energy to force a smile and not scream as Rachel took this picture. She was thrilled. I was paralyzed with fear.

GET. OFF. ME.

All in all, a gold star trip. Thumbs up for the bog, we'll be back! (with bug repellent)

Saturday, September 7, 2013

The Little Fish

Jeff and I met as lifeguards, have I mentioned that? We both grew up in water. I did swimming, he did diving and waterpolo. We both love being in the water and are completely comfortable there.

Rach is reenacting our lifeguarding days

Having a child who can't use his lower body stumped me. How in the world would he fit in our family? How would he go to swimming lessons? How would we take him to the beach? What in the world would he do in our backyard pool??


I started taking Kingsley swimming when he was a baby at our Centre which has a very, very warm little therapy pool. At the time we moved into this house last spring, I'd say Kinger was the most comfortable in the water of the three of them. He didn't panic when he was dunked (though he didn't like it either), he could float almost on his own on his back, and he really loved just hanging out in the water.


Through sheer exposure to water, the girls have magically learned to swim this summer. It's truly blown my mind. Rachel has gone from a timid floater to swimming in the deep end all day, every day. Cordelia isn't comfortable in the deep end yet, but she's gone from freaking out if her face got splashed to swimming underwater.


Kingsley is finding his way. He wears a puddle jumper in the water, which is a fabulous invention, in my opinion. In June, I had to be thisclose to him to make sure he didn't tip over and get a big mouthful of water. He didn't know what to do with his arms, couldn't stay level, and only went where we took him. I predicted the most boring summer in the world, having to stand in the shallow end keeping him from drowning while everyone else got to actually swim.

workin' on the chest muscles

Fortunately, I was totally wrong. King is a little fish! I don't even have to be near him, he just swims around using his arms. If his face goes in now, it's because he wanted it to (or because Jeff dunked him). He likes to hang out on the stairs and play with his trains (aka bath toys), take the dog for a walk (aka hang onto the tube for the automatic pool vacuum), do push ups on the lane rope, and ride on my back as I swim around. He's also good at jumping in (aka sitting on the edge and throwing himself into the pool).


I don't know what the future holds for him in the pool. I know there is a place I can access for 1:1 swimming lessons that I'm going to tap in to soon and see if they can teach him to swim without his legs. I'm confident that he'll find his way.

Wednesday, September 4, 2013

Stable Like a Table

A midst the craziness of the first day of school yesterday for Rachel and Cordelia (grade 2 and SK), Kingsley had his follow up appointment with his neurosurgeon. The MRI showed nothing of interest! Everything was stable - his ventricles, his (potentially tethered but asymptomatic) cord, his (also asymptomatic) Chiari Malformation, and his syrinx which is all the same size, no bigger, no smaller and not causing any drama.

[exhale]

Such. A. Relief.



The girls had great first days of school. They both love their teachers and were excited to see their friends. No tears!

except Kingsley. he cried. smiling for pictures is pure torture before 9am.
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