Duck and Cover

I am so overwhelmed by SB right now that the last thing I feel like doing after the children go to bed is writing about it or thinking about it in any capacity. I feel stuck in a constant state of loathing for SB and all of the baggage that comes with it. But for the sake of documenting this little chaotic phase of my life, here is what we're dealing with. 

The Ugly: Yeah, that stuff. We're onto the next phase. I kind of thought, 'hey, we'll start this next procedure and it will work (or not) and that will be it.' Nope. It takes a lot of trial and error and tweaking and adding, subtracting, adjusting. Ugh. I'm so over it. More than anything, I wish I wasn't flying solo on this. I wish there was some professional here who knew about these things and could support and advise us. The first couple of weeks I felt quite desperate and flailing, like walking around blindfolded. Fortunately, my SB peeps have pulled through and I've tapped into the underground world of Moms Like Me who are willing to talk about the unmentionable stuff. Thank God. 

Speech: King is in speech therapy again. He flips his she/he, her/him all the time. At first it was awkwardly funny when he'd call a man 'she' or a woman 'he', but now it's downright frustrating. We're also working on F and the elusive K sounds. 

Food: I just finished an OT feeding group where I spent two hours a week trying to figure out how to get Kingsley to eat. I swear, my life revolves around getting things in one end and out the other. He hasn't gained weight in the last year, has barely grown. I need him to eat more and eat something other than cheese. It would be nice if he would voluntarily eat it as well. You know that saying 'kids won't starve themselves'? It's not true. For real, that's part of what I learnt. Kingsley falls into the small percentage of children who just doesn't want to eat a lot of the time. There's a long history about why, but I'm so tired of thinking about it. Long story short, he is making some gains here. I think I've managed to boost his caloric intake and he is getting more brave about trying new foods, and food in general. Yay!

Fine Motor: Kinger is also doing his own OT group, this one for fine motor school-related things like colouring and cutting. It's aptly named 'Cut and Colour'. He's doing great with it. For some reason, he is incredibly interested in doing both when in a small group. Not remotely interested at home. Ah well. Maybe that means he'll do it at school next year. 

Sports: This hasn't happened yet, but I've enrolled him in an amazing program called Making Waves. Starting in January he will have 1:1 swimming lesson, which is awesome. We've also borrowed the same sledge we had two years ago and I'm pumped to get him out on the ice... when our days are a little less booked. 

Surgery Recovery: He is doing great, now that his casts are off. His incisions have all healed ridiculously quickly and his legs are still good. I am super paranoid about them tightening up again though. Twice a day, I give him a leg massage and go through a bunch of deep stretches, then two more times a day I just do the stretches. It's time consuming and sometimes, the last thing I feel like doing. He also wears his leg splints to bed, which he's not complaining about. He's also had a bazillion appointments related to his legs. OK, maybe not that many, it just feels like it. He has new AFO's now, which required new boots and check ups. 

Other Stuff: Then there's all of the monsters lurking under the bed, the things I notice and wish I wasn't noticing. I feel like his back is wrong. I'm not sure how to explain it or what is going on exactly, but he's not straight. I don't know how to fix/prevent it. I'm not sure I want to think about it very much, but obviously I can't bury my head forever. He's also been coughing/choking a lot lately, which is where my brain goes crazy and tells me that he'll need a decompression RIGHT AWAY. That is the stuff of nightmares. Of course, it could be the dry air giving him a tickle or a cold or something simple like that. Oh, I just want it all to go away. 

And between all of this SB overload, we have Christmas. I adore Christmas and love extending the Holiday Joy as much as possible. I am trying very hard to not let SB trump that joy. 

Laura did our photos again ;) http://www.everylittlephoto.com/

*drum roll*

I promised pictures. 

All we've been doing is a lot of living and fighting colds. And more colds. And more colds. I went nearly 2.5 years without getting sick at all - I think it was the universe's way of recognizing that I had quite enough going on, tyvm, but that time has passed. I've had probably three colds in the past two months, maybe four, I can't remember. For some reason, my children love sneezing in my face, wiping their nose on my cheek, drooling on my pillow, and any other disgusting way they can find to ensure that if they're sick, I'm sick. It's working. 

Anyway, between these lousy colds, here's what we've been up to. 

We went skating again. Kinger, Cordelia, and I went with a friend of mine. Both Kingsley and Cor amazed us! They had a great time, no complaining and both attempted going out on their own! Kingsley didn't quite have the strength to dig the picks into the ice and push off, but he did a nice job of tapping the ice and had tons of fun being pushed around and around and around. 

It was my birthday! My mom brought this lovely hat over for me. You should've seen King's face light up when he turned around and saw it on my head. I have no idea why, but Kingsley loathes toques, but will wear any other type of head wear without complaints. 

Kingsley also seems to be convinced that every time Happy Birthday is sung, it is sung to him and him alone. He loves it. He also likes to cover his ears when he's really excited about something. 

Kingsley is a moving machine lately. He is so comfortable going up and down and over and back and every which way. He's great. It seems crazy that just a few short months ago, I was in tears over him suddenly being able to get up on all fours. He practically lives in this position now. 

I don't know what it is about this picture that I love so much. It just captures him so well - the blurred arms as he reaches out and signs for me to pick him up, the determined look in his eyes as if he's daring me to NOT pick him up, the way his mouth is mid MOOOOOOMMMMM!!!

My kids are born yogi's. Kingsley has very tight hamstrings, but the rest of him is bendy like his sisters. This is a bit freaky to see him bend back over his Bumbo in real life, but when he wants something, he figures out how to get it. 

The weather here has been GORGEOUS! We didn't have much of a winter at all and it suddenly feels like spring. I even have tulips and rhubarb starting to pop up. It's crazy. It's King's first spring/summer officially on wheels, so we've been a little scrambly on how to make outside work for him. He wanted to crawl in the grass and on the driveway, was convinced that he could go over curbs and would get SO MAD when he'd get stuck. every. single. time., loved chasing the girls down the sidewalk, and had a total blast in the sandbox. We will figure this out. 

The girls are spending the night with Jeff's mom and I desperately needed some way to keep Kingsley happy, as I am nowhere nearly as entertaining as they are. I took him to Michael's to get a few things for Rachel's birthday party and we ended up in the back corner of the store. King so badly wanted into the EMPLOYEES ONLY door. He kept going at it from different angles, as if I wouldn't notice if maybe he backed in to the door instead of going forward, or maybe he could just sidle up next to it... This is the action shot of him backing in to it. 

After Michael's, we hit the library. To get him OUT of the library, I had to put something really interesting in his hands (so I could steer him out!). I found a Backyardigans DVD. I don't know how it happened exactly, but King has fallen in love with Tyrone from Backyardigans. I love watching him watch this show, he gets so excited. He laughs and dances and laughs and dances and yells MOM!! MOM!!!!! to make sure I know each and every time Tyrone comes on screen. 

To fill the time after nap, before dinner, we went to my parent's house. Kingsley had some fun in the doll house. Literally IN the doll house. 

He tried very, very hard to get through this little door. He could get his head through and that's about it. Good effort, buddy. 

My Dad will shake his head at how horribly cropped this picture is, but I do not care ;) I love watching my Dad play with my kids. He's so good with them, which kind of always catches me off guard. Kingsley adores him. I can still hear the joy in my Dad's voice when I called to tell him that I was having a boy - he's the fifth grandchild and first boy. He adores his granddaughters, but as this was his last shot at having a grandson, I think he was quite relieved to finally get a grandson. 

That is it!

Living

I've been a total blog fail!  I've been blanking on anything to blog about lately, which I suppose is a good thing, right? We've just been doing boring life stuff, no excitement, no drama, no scares... just the way I like it!

And so for the second  time this year already, I'm going to do a pathetic little recap of all the big things in our life that we are currently consumed with...

1. Rachel's birthday. It's on March 19 and we are planning an epic Mermaid party to beat her Fairy party from last year. When I say 'epic' I do not mean that this will be the type of party that ends up on pinterest, because I am just not that put together, but it will be awesome for her... thanks to pinterest ;)

2. My birthday!! It's next week and to celebrate, I'm going away for the weekend. I've never done this before. It's funny because I'd be the first to give someone a funny look when they say they can't leave their non-breastfed kids, but even though King is no longer attached to me I just haven't ever gone away. So, I'm going. Two days without children or Jeff. I'm giddy with the thought of it!

3. Kingsley finally got his custom seat for his wheelchair! It's GORGEOUS and makes his ride look so cool. He loves it, I love it. I have no pictures. Total fail.

4. Skating! I took Kingsley and Cordelia with my friend Jen and it was a total success!! I'm just so proud of the two of them. We're going to start going a lot more regularly.

5. We are waiting to start speech therapy. He's at the top of the list and we just need to get ready for the call. In the meantime, I feel like he's communicating more and more. I'm so torn on this whole speech thing, it should probably have it's own post, but oh well. ;) I swing from KNOWING that Kingsley does things in his own time and worrying that things don't always go the way they're supposed to with him. Really, if I don't think about it, it doesn't bother me at all. I understand most of what he's trying to communicate to me and he responds as if he understands everything I'm saying to him. Speech will come.

6. Yoga. OK, this is just what my life is revolving around! My beloved Moksha Yoga finally opened another studio TWO MINUTES from my house. 'Love' doesn't begin to describe it, I pretty much want to camp out in their parking lot. I used to go to hot yoga all the time before kids, between pregnancies, and then life just got insane after Kingsley and I haven't been back on my own. I didn't know how much I needed this until I stepped into that hot room and felt like the weight of the last three years just lifted. I get up at 5:15 in the morning to go, that's how much I love it. The downside is that I tend to go to bed a lot earlier and obviously my blogging time has faded away. I'll work that out.

7. Crafts. We've created a crafting monster. Actually, I love it. The three kids sit at the kitchen table together and craft. Kingsley's mediums are crayon and sticker. He's getting quite talented. Mostly, I think he just loves being there with his sisters doing big kid things.

And, yep, that's about it. King's doing great, he's gotten over his colds, he flies around the house getting into trouble, and he's expanded his Love List to include Tyrone from the Backyardigans in addition to Elmo. He's having another brush with fame, but that I really will save for another day. ;)  And I'll start taking pictures, too!

Happy March!

Icey Adventures

I forgot to update on finally taking Kingsley out on the ice! It was.... eventful. I had these ideas about taking things slowly. I am not a skater. The girls have never been on skates in their lives - my fault, Jeff begs every year, but I loathe winter and all things cold.  Really, what twisted person thought that sticking thin little blades on the bottom of boots would be a good idea??

Regardless, the girls have been asking about skating. Santa brought Jeff and the girls skates for Christmas (oddly, I was the only one in the family with a pair before then). The girls had been 'skating' in the front hall on their socks to prepare for the beautiful ice dancing they'd do once we sprung them on the ice. We got the sledge. And then Jeff got invited to a family skate at the JLC. Come on, who goes skating for the very first time on the biggest rink in the city? Yeah, us. Brilliant.

It fell apart pretty much as soon as we arrived. It was nap time for Kingsley. We arrived with helmets for the girls and none for King, as Jeff had insisted that he wouldn't need one. Not so. Luckily, some of the incredible staff there found a loaner helmet for King. He was thrilled *cough*  We also realized that it is impossible for a toddler to hold picks while wearing mitts. And that when you bundle your toddler up a la Randy in the Christmas Story, they can't sit up straight in a sledge. Lessons learned.

The arena is HUGE. It's loud. It's bright. It took all of 1 second for Cordelia and Rachel to realize that skating in your socks is not remotely comparable to skating in skates. It took all of 1 second for Kingsley to realize that he would like to be anywhere else.

In the end, Rachel got brave and even managed to shuffle across the ice on her own! Cordelia almost stood up on her own. Kingsley did stop crying when I got him going. It was handy to have the poll that allowed me both to push King along and stand up straight myself ;) And the helmet sort of slid over his face, which might have dimmed the lighting and muffled the incredibly loud music a bit.


We also decided to go all out and take the kids to a sledge hockey tournament that was happening here last weekend. It was definitely a cool experience for many reasons. First, there was no hope of getting an accessible parking spot ;) There were two whole rows and cars were circling like sharks hoping to snag one whenever they saw someone rolling out of the arena. Once we got in there, it was... I don't know the word. There were so many people on wheels. I guess it was reassuring. A reminder that the big wheels are just fine. I'm used to Kingsley getting a lot of looks and smiles when he's out rolling around, and even in this place it was the same - I mean he's a pretty cute kid zipping around, you know?  Once again, he hated the big open arena where the game was, but loved wheeling in and out of all the people outside of there, checking out their wheels and seeing what they were eating. ;)

As for the game itself - holy cow. I am not ready to be a sledge hockey mom anytime soon. It was amazing. My first thought was how incredibly strong these athletes would have to be. My arms ached just watching it! My second thought was: *CRINGE* It's not a gentle game. We saw more than one player get checked out of their sledge. Imagining Kingsley on that ice made me want to cover my eyes! I was assured that the game we were watching was the top level and that there were many lower levels and age groups before you got up to that prestigious (and aggressive) level. Phew. I can be weaned into this, if King decides it's his thing. ;)


Jeff and I took the girls skating again the next day, without Kinger. We were able to snag some of those skating bar things that kids can hold on to when they're learning to skate. Both did great with them and managed to stay on their feet. Mostly. I think we're going to try just going one on one or two on two until at least one of us can get across the ice on our own. 

Two Years and Two Blades

I almost missed the fact that yesterday was Kingsley's two year Shuntiversary. This is a very exciting thing in our world.

Kingsley has hydrocephalus - which means that there is too much CSF (cerebrospinal fluid) in the ventricles in his brain. This is a problem as it would just make the ventricles grow and put pressure on his brain causing damage. Years ago, people with hydro would've passed away or had severe cognitive impairments, but in the last 30-40 years, a shunt has changed the lives of people with hydrocephalus. It's like a little valve/pump device that is behind his ear, through his skull and into his ventricle. It drains the fluid out of his brain and through a long tube (that you can see under his skin if he's topless) down into his abdomen where it is reabsorbed by his body.  No pressure on his brain, no damage caused.

The one downside of this shunt is that it is not perfect. It can malfunction, become clogged, get infected or even break apart. It's quite common for people with shunts to need a shunt revision - in fact about 50% seem to need at least one surgery in the first year with a shunt. I think most kids need a revision by the age of five, but more and more I'm hearing about kids passing that marker just fine. Regardless of when/if there are problems with the shunt, at some point Kingsley will need the tubing changed as his body grows and gets longer.

For now though, going two years without shunt problems is pretty awesome and worthy of recognizing. So, yay for Billy the first! Here's to many more years in harmony. :)


Kingsley is borrowing some more new equipment! Up here in the cold, not-so-snowy north, we skate. By 'we' I mean most of the population except for people like me who just stay inside and make hot chocolate.... up until this year anyway. Jeff has been itching to start the family skating ever since I mentioned that I saw a mini-sledge at our centre in the fall. We all got skates for Christmas and now Jeff is even more excited. So, today, Kingsley and I picked up the sledge.

Sledge hockey (called sled hockey in the USA) is a pretty major sport. It's essentially the same as ice hockey, except it's done on a sled (metal contraptions with blades) instead of skates. The other big differences is that the sticks they use are about 1/3 the size of a regular hockey stick and they have picks on one end. To move, you use the pick end, then flip it over to hit the puck. I actually know very little about the rules of hockey and thus, sledge hockey, nor am I even sure if I'm using the right terminology here!

I have no idea if this is actually a 'cool' sled, it just looked cool when I googled ;)

Kingsley is going to be on the toddler-skate equivalent of a sled - a platform with a seat and two skate blades underneath. We hemmed and hawed about giving him picks, but once I had him strapped in and just showed him the picks, it was pretty clear that he was going to want them. As soon as his belt was done up, he started rocking back and forth as if he was trying to get the sledge to move. I handed him the picks and he immediately held one in each hand and poked the ground for leverage to get moving. He's a natural!

The local sledge hockey league doesn't accept kids until they're 7 years old, so Kingsley has a few years before he's old enough to really get going, if he decides he actually likes it. In the meantime, I'll take lots of pictures... you know, just in case I ever need to do a Paralympic bio talking about how he's been on the ice since the age of two. ;)