The Little King

Moments

2012-01-26T21:59:00.000-05:00

I still have them.

Those moments where your heart freezes when you find yourself faced with a random never will because of SB.

At first, when we got the diagnosis, they were big ones. Like: I won't get to hold him right after he's born. I will never get that family shot of the three of us when he's seconds old. I won't get to lie awake holding him on his first night. I won't get to smell him before they clean him (which is kind of gross sounding unless you've smelled a seconds-old baby and then you know that little bit of heaven I'm talking about).

We got through those moments, those nevers and it was just fine.

Eventually, I was even able to start spotting the wills - those tiny silver linings that sparkle or blind you with their brilliance every so often - things that we get to do now because of SB. The people we've met, the places we've gone, the moments that would've slipped past without notice 'before'.

But every now and again, a stupid little never pops out of nowhere.

Today, I was attempting to do Zumba on the Wii so that no one except Kingsley and Rachel had to be subjected to the awkwardness. There was a buff, extremely talented, animated guy doing the dance and out of nowhere I thought: Kingsley will never dance like this.

*squeeze*

Then reality tapped me on the shoulder in the form of my flailing reflection on the TV and the vague memory of what Jeff looks like when he dances. Yeah... Kingsley will never dance like that guy. That was a given, SB or not.

Moment over.

Two Years and Two Blades

2012-01-19T22:12:00.000-05:00

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. ;)

King's Second Year

2012-01-17T21:24:00.000-05:00

TWO

2012-01-15T22:14:00.001-05:00

My sweet little boy turned two today.

TWO.

Two years ago he was born. I get so emotional when my children have birthdays. Remembering their births is so lovely, there just aren't words for how it feels to bring a child into the world. It's magical. Kingsley's birth was no exception, but since I've gone on and on about his birth day at various times, I will spare you today. ;)

I know it's kind of cheesy to say that I'm inspired by my own son, but I truly am. He doesn't do anything that any other kid doesn't do. He just goes about his days, his weeks, his year learning, trying, playing and developing. But when Kingsley does it, he's defying odds.

I cannot even begin to count the number of times this year I have been reminded of the brilliant words my friend, Cassie said about her own son, Caleb: I've seen him do things I didn't think he would ever do. So many moments this year, I have seen Kingsley do things that amaze me. Things that I wasn't sure he would ever do. Things that if you told me one year ago today: this is the year Kingsley will do THIS, I would probably have doubted you.

This year, Kingsley showed us for the fourth time that he is a fighter. That he will bounce back. That he will continue to be resilient. He learnt to play. He learnt to hold his own cup. He learnt to hold a spoon (although, he did also learn to throw it instead of use it to eat. Baby steps). He learnt to eat. I forget that a year ago he was barely eating solid foods at all, nevermind finger foods, that he didn't even start eating solid food on a regular basis until the spring and that I still have a cupboard shelf full of baby food because he only just stopped eating it a couple of months ago. He learnt to communicate with us... in ways other than words, but he does get his point across! He learnt to sleep through the night - ALLELUIA!! He learnt to roll over both ways (again). With support, he got up on his feet for the first time.

This year, Kingsley learnt to MOVE. His world grew exponentially at the end of the summer when he learnt to make his Bumbobile GO. And then his dynamic stander. And then his wheelchair. And then his body as he learnt to roll and twist and wiggle and finally crawl. Alongside all of the moving, Kingsley also learnt to sit. On his own, on the floor, with his hands up, playing, reaching, clapping, slipping into an Elmo's World coma.

It has been a big year for my little rockstar.

Yesterday, we had a little party to celebrate the big year that he has had. He was not that impressed. He cried, a lot. Covered his ears, his eyes, whined, and then finally accepted that no one was leaving and so joined in the festivities. What else are you going to do when you're already all dressed up, right?

Besides, there were presents. Can't be grouchy when there are presents.

Right beside him, cheering him on every step of the way, were his two bestest friends and biggest fans:

We did it all over again today, because that's just what you do when you're two.

Kingsley's second year was incredible. It was not without heartache, frustration, and impatience, but those things were so overwhelmed by the joy, excitement, and pride at the incredible kid Kingsley developed into this year.

I am so excited to see where he goes in this next year.

Happy Birthday, Kingsley!!

We love you so much!

Birthday Season

2012-01-12T22:34:00.002-05:00

There's this cyclical thing that happens in our household. It starts with Christmas and the discussion of Jesus's birthday. Without fail, it leads to: "Mommy, when is MY birthday?" My niece, Kamille's birthday comes first. She turns the same age that Rachel is, which is an even that pleases Kam quite a bit. It also spurs Rachel to literally start counting the days until her birthday, when she will again be OLDER than Kamille. Between January 9 and May 23, we have Kamille, Kingsley, Auntie Kristi, Uncle Kevin, Grandma Marilynn, me, Aunt Crystal, Uncle Connor, Rachel, one of her BFF's Eric, and then finally Cordelia and my brother, Dave. Jeff is in June, but by then the girls are over it and counting the days until we can start it all over again.

This weekend is not the first party for us. Since my sister and her crew were here over the Holidays, we decided to have an early party. For me, it was a test run to see how Kingsley would handle things.

oh, he's playing bashful. see that smile? he loved it

more! more!

yay!! sing it again! sing it again!

he didn't blow them out, I had to do it for him. he just wanted to look at them and make us sing again

Kam's an old pro!

love this big five year old! she picked the icing colour ;)

So, I have three days. Two until his party, three until my baby boy is no longer a baby. I can't believe he's going to be TWO. Reliving his birth this year is so different from last year. I think most people wouldn't understand when I say that this year we are so far removed from the SB stuff, considering the fact that we just got his first wheelchair, he's starting speech therapy soon, we're talking new braces for him, and a few other not-so-typical things are in process. That's all just life stuff though, just the same way we're shopping for new boots for Cordelia, teaching the girls to skate, and finding new ways to challenge Rachel's brilliance. Two years ago, we were drowning in the unknown and preparing ourselves for surgeries. A year ago, we were drowning in the unknown and preparing ourselves for another surgery. This year, we're wondering where we can get a sledge so King can go skating, too. We're wondering what to do with the toy store that exploded in our house last month. We have simple, pointless problems. We are just. so. lucky.

Are you ready for Elmo cupcakes? I sure am!

Full of Awesome

2012-01-08T22:38:00.000-05:00

Blogger ate my last post. It was a whole year review, but only half posted and then I have not had the motivation to redo it. I hate when stuff like that happens! I know, I know. Those of you who read it are hanging on, desperately waiting for the whole thing ;) One day.

I have a good reason for my blogger-slacking. Kingsley has been doing SO MUCH that I literally dread having to do posts for each and every amazing thing that comes up. It feels like everyday he springs something new on me.

So, here is my attempt to recap Kingsley's last 6 weeks or so.

He started crawling. Rachel started crawling at 7 months, Cordelia at 8 months, Kingsley at 23 months, but who's counting! ;) Actually, it caught me so off guard that I left him in the upstairs hall one day with the girls and answered the phone in my room. When I came back, the hallway was empty and I nearly keeled over in panic. He followed the girls down the hall and into Rachel's bedroom, a nice red rugburn developing on his pretty little bare knees. He was pretty proud of himself. It's a bit of a lopsided commando crawl. I had halfheartedly left up the babygate at the top of the stairs after Cordelia stopped needing it. I've never been so happy to use it!

Other big news... he got his wheelchair! This feels like it deserves it's own post, for sure, but here you are. Yay! It's harder for him to move around the house than his stander and Bumbobile, but he does love it. He can throw quite the tantrum if you dare try to steer him or get him to stop/go when he does not want to. Unlike Rachel and Cordelia whose biggest fear seems to be getting left behind in a store aisle, Kingsley takes off and couldn't give a care in the world as to where I am. The world is his playground. :)

I couldn't get a shot from the front. he won't sit still!

I sacrificed my toilet paper roll just to get these

His upper body strength is getting a little bit ridiculous. He is doing feats of bravery that make my heart leap out of my throat. OK, so he is no Aaron Fotheringham, but in his own way he is becoming quite the daredevil. He has learnt to wheel up to things (like the fire place mantle), grab the edges and pull himself OUT OF HIS BUMBOBILE. What the heck! I mean, really. Consider that he has no functional use or feeling below his hips, the Bumbo is a deep, heavily supported seat, and you can kind of see why this both amazes and horrifies me. He has also pulled himself out of his bath seat by grabbing onto the side of the tub (I've watched him do this twice, so dumbfounded that I didn't think to intervene). Today after I had gotten him out of the bath, he decided to do chin ups on the side of it. Incredible.

action shot - he's up off his legs here, just holding on

Bedtime has also developed a few problems. He woke up one morning with two welt-like marks on his leg, one on the front at the top, one on the back at the bottom. Seems he had poked his leg through the bars of his crib and twisted for quite some time. We put the bumper pads on and he is slightly less impressed with this addition. To say that he hates them would be an understatement. He spends most of his nap trying to dispose of them.

poor little guy in his cell...

What I love most about Kingsley learning these new things is the look on his face when he does it. It's like he KNOWS how awesome he is. His whole face lights up and his eyes twinkle with such a mischievous pleasure, I can do nothing but laugh and cheer.

1, 2, 3, 4, 5...

2011-12-28T23:52:00.000-05:00

So... Pinterest, right? Weird site. I don't entirely 'get' it, but I do find myself opening the app and suddenly hours have passed and I regret it when I have to get up in the morning. On one of those random nights in which I look at things done by people far craftier than me, I stumbled upon a picture of a row of cousins all wearing shirts with their age on them. Awesome!

My brother does not have children and my sister has two who happen to be born on the alternate years that I did not have kids. That means that from September 2 until January 8 of any given year, our kids are sequential in age - so right now they are 1 (Kingsley 2010), 2 (Karis 2009), 3 (Cordelia 2008), 4 (Kamille 2007), and 5 (Rachel 2006). In two weeks Kam will turn 5 and ruin it all ;) but for now, we decided we should try recreating that very cool idea.

We gave it a valiant effort.

first, add the big girls

second, add the little ones. give numbers. so far, so good.

practice smiling. hmm...

add backdrop and hold up your numbers!

demonstrate how to hold up numbers for Kingsley - which he thinks is funny

intervene with the little ones.

Kingsley is annoyed with my attempts to get him to actually HOLD the number.

ok, numbers on the toes then. pretend I'm still holding the backdrop correctly.

fleeting attempts to revive the photo shoot.

...and we're done.

Now scroll back up and look at Cordelia in all the pictures. She makes me howl.

Rachel is a pro.

We plan on doing this whenever they/we visit. I think it'll be cute to see over the years.

Whole Lotta Christmas Going On

2011-12-28T22:11:00.000-05:00

I know Christmas is generally a busy time for everyone, but for us, this year was/is exceptionally insane. We have been going nonstop for about two weeks now. It started on the 15th with Kingsley's MRI and my aunts passing, which of course meant family time as my relatives came to town for the visitations and funeral. The funeral blended into our first Christmas when my brother and sister-in-law were home. The next day we hosted Jeff's extended family. Then we got our Christmas miracle and had our second Christmas with my sisters family. A triple date to see Stuart McLean was next and both girls had their Christmas concerts and last days of school that week as well. Then another Christmas party and we had Christmas Eve and of course the big day itself. Boxing Day was lower key, but was followed by early birthday parties for Kingsley, my sister and my niece, which rounds us out with today when the girls went to the theatre with Jeff's mom and I did a little too much online shopping with all my free time (oops). We have two more parties this week and 5 playdates to arrange for next week while everyone is off. No biggie. ;)

Fortunately (for me) my sister being home means that I got to have someone with a really awesome camera take all the pictures! There are so many cute ones, I cannot possibly post them all, but here's a glimpse at our awesomely insane Christmas 2011.

day one of the insanity - waiting for the MRI with Daddy

my brother and sister-in-law gave King this ridiculously cute hat. he loves it and wears it all the time.

put my girls and my sisters girls in a room together and what do they do?

Jillian Michaels workouts.

for real.

even Kingsley was entertained.

pretty much sums up my thoughts on that first week.

(can you see his scar? people have noticed it a lot more with his recent haircut)

hey! it's me! still feeding Kingsley. sigh.

tracking Santa's progress on Norad.

could hardly handle the cuteness on Christmas Eve.

it is really really really really really hard to get a good picture of all 5 kids at once.

time for bed!

um. yeah, those are the same pj's as last year. they still fit! if it ain't broke...

Christmas for 11 = a very full tree

one of my favourite gifts for Kingsley.

wowing my sister and brother-in-law with his wheeling abilities. I can't count the number of times people watched him with amazement as he rolled around over the past few weeks.

"So many girls. So much giggling. So much squealing."

Phew! OK, I'm done. I have a lot more exciting news, but that's another post! ;)

Christmas Miracle

2011-12-21T22:12:00.000-05:00

Kingsley is fine, just fine.

We saw his neurosurgeon today. She said his syrinx is still there, still significant, but stable. She asked a whole bunch of questions about what we've been seeing, what Kingsley has been doing, what the concerns are, what changes he's had. She believes they are because he is doing so much more, using so many more muscles in different ways and so there are some side effects - his hamstring is tight because he's realized he can bend that knee to move around and so bends it (he doesn't have the quad muscles to stretch it straight again). The increased twitching is enervation and conscious movement where before it was passive. He's just doing well.

One small shadow: his Chiari area is a bit tight. She asked about his eating and if he chokes and whatnot. He isn't showing any symptoms that concern her, so no surgery now. She is not keen to jump in and open it up more without a really good reason, as doing so could cause more problems so there's no point in putting that risk out there without a very good reason. The same with putting a shunt in his spine to drain the syrinx - there are no guarantees that it would help the situation and no guarantees that it wouldn't make things worse. So, while everything is stable, no surgery. If he has significant changes, we'll have to look into those things.

More good news! His brain is perfectly wonderful. His shunt is working perfectly. There is nothing there that would be causing language problems, as far as she could see, so the delay is just a delay that he will work through, as far as anyone can tell.

This is all pretty much beyond what I could've hoped for. I was imagining terrible things and not a single one of them came true. It's like Christmas morning, his birth day and winning the lottery all in one.

This afternoon, my sister came home to celebrate with us. Really, they came home for Christmas, but this was a pretty good second reason. ;) Christmas can officially begin again. All is well.

The Cheer has Left the Building

2011-12-16T20:34:00.001-05:00

We have had a couple of really rocky days here.

Last Thursday was Kingsley's MRI. The morning began as usual until I got a call from my mom telling me that my aunt had passed away in the night. She had had health problems, but this was unexpected nonetheless. It was a heart attack that was the conclusion to a number of very hard years for her. I am so sad to lose the wonderful woman that she was. I know that she's at peace now, but I'm just so sad.

Kingsley's appointment was supposed to be at noon. The poor guy had not eaten since 6:30 the night before and was doing so incredibly good about it when we checked in at 11:30. We were told that they were behind by about 30 minutes. Thirty turned into 60, then 90, then 2 hours. He finally went in just after 2:30. It took him longer to fall asleep this time, which was horrible. I just held him while they held the mask on his face and he cried and cried. I hate that part so much, but I cannot imagine him going through it without me there.

I have heard mom's say before that they feel badly complaining about how scared they were when their kids went in for tonsil removals or other routine procedures, because compared to brain surgery they are not that serious. I'm telling you though, it doesn't matter what the procedure. Kingsley was put under a general anesthetic, he had an IV and was intubated for his MRI. That's all and I was about as terrified for this as I was for his two brain surgeries. Trusting people to do things to your child is a very scary thing. With my heart in my throat, I waited the long hour and a half until he came out.

They rolled him out and I could just not believe how big and brave he looked, lying there on the bed with his head on a pillow like a big kid. They said he didn't cry or even whimper in recovery. So proud of that guy. We took him home and he was back to himself within the hour.

I had begged them to send us an email as soon as they saw the scans, no matter the results. I needed to know if I could relax or if I should cancel Christmas and start arranging childcare. I did get an email the next day and the answer was somewhere in between. The syrinx is still there, that nasty devil. I did not know that it was possible to hate a part of my son so deeply, but I hate that syrinx with all my being. I want it gone from our lives or at least made insignificant. Instead, it haunts us. It may or may not be causing these problems. It may or may not require more surgery. It's not urgent, but it's not good.

We have our follow up appointment first thing tomorrow morning and then King's neurosurgeon will assess him and let us know her thoughts about surgery in the new year.

Holiday Happies

2011-12-13T21:50:00.000-05:00

The big unknown is bringing me down and putting a damper on my Christmas cheer! Bah humbug to that, so I am trying to make another conscious effort to seek out the Holiday joy in all the things that make me get that warm, fuzzy Christmas glow. Here is my list of things that bring on the Holiday Happies:

1. Peppermint
2. Shortbread
3. A Christmas Story
4. Chocolate mint Bailey's in hot chocolate

5. Candles
6. People who complain about the people who complain about the snow
7. Boots
8. Hot chocolate
9. Elf
10. Have Yourself a Merry Little Christmas sung by Judy Garland
11. Gingerbread houses decorated by kids
12. Miracle on 34th Street
13. Scarves
14. Chubby pink cheeks when kids come in from playing outside
15. The way Kingsley's ears perk up whenever 'the newborn King' is mentioned in a Christmas song and the way he looks around to see if anyone else noticed that it's yet another song all about him. Or so he thinks. ;) (this one is his favourite)
16. Christmas cups at Starbucks

17. Christmas pictures, even when they're atrocious

18. Eggnog
19. Love Actually (the beginning and the end at the airport gets me every.single.time.)
20. The nights when it's snowing and the whole sky looks pink and glows with Christmas lights and every sound is muffled by the snow
21. Garland with red bows and white lights
22. Gingerbread lattes
23. New toys
24. Christmas sweaters, especially on people who don't realize that they're funny and even more especially when paired with earrings and/or broaches that light up

25. Classic Christmas commercials that still make me laugh years later
26. Christmas traditions
27. Sarah McLaughlin's Wintersong CD

28. Presents you weren't expecting
29. Matching Christmas outfits

30. Advent masses the whole month leading up to Christmas
31. Charlie Brown Christmas
32. Giving someone the Best Gift Ever
33. Having family fly really far (*cough* via Cancun) to be home for Christmas
34. Online shopping. Honestly, how did parents shop before it was invented?? I'm exhausted just imagining
35. Christmas crafts
36. Family

OK, that's all I've got right now. Go find your own joy. :)

How Much Can I Squeeze into One Post??

2011-12-07T14:37:00.001-05:00

Well, life doesn't stand still just because you're waiting for an MRI to happen and tell you whether or not your little corner of the world is going to get hit with a bag of coal for Christmas. And while life has continued, we've been dipping our toes in Christmas fun!

For starters, we got our Christmas pictures back. In case you haven't noticed, I do like pictures of the kids complete with coordinating outfits and all that stuff they will one day hate me for. This year, I could only laugh. Their outfits are gorgeous, if I do say so myself. However. Kingsley was in the midst of a cold when photo day arrived. He woke up with dried snot all over his face (I know, you're wondering how my little rockstar could be anything but gorgeous, right? ;)) which left dry red patches everywhere. Cordelia was also grouchy and tired. Rachel was my usual princess. Add those three elements together and you get this:

Yeah, I don't want to spoil it for you if you are on my Christmas card list, but that's what you've got coming to you.

We put up the Christmas decorations, which sparked Rachel's annual roll playing of the birth of Jesus. She's been doing this the last three years. It has improved. The first year she wore an ice cream tub on her head as the halo and was usually naked except for a blanket around her waist. She's clearly taken a page from Linus's book with the blanket and the tie. ;) We all get to play parts in her story. Cordelia is lucky if she gets the roll of Angel (think: Gladys Herdman). Kingsley is usually a barnyard animal of some kind. I think the bunny there is favoured as Joseph. Nudie Baby (that creepy naked baby in Rachel's arms) is always Jesus. My favourite part is when she waddles around with Nudie Baby under her dress looking for a place to stay.

I was nervous about how the tree would go with Kingsley on wheels this year. So far, he has nothing but love. He wheels right up to it and stares in awe. Loves to delicately touch the ornaments and basically try to live inside the tree. I know the feeling, I used to love lying under the tree when I was a kid. It's so pretty. Even when it looks like Christmas threw up on it.

We went to a family Christmas party and met Santa. Like last year, Kingsley and Cordelia wanted no part of it. Also like last year, Rachel snuggled in and would've happily sat there chatting with him all day if it were allowed. Kingsley amazed everyone with his wheeling skills. He zipped in and out of everywhere! I love my little mobile man.

He looks like such a big kid here, eating pizza with his sisters like it's no big thing.

He was enthralled with markers. Has no interest at home, but here they were the Best Thing Ever. Isn't that always the way?

I also had the very cool opportunity to participate in an online cookie exchange via a guest blog! I'm all kinds of famous now. ;) Have a look: http://maijasmommymoments.com/cookie-exchange-sugar-cookies-fit-for-a-king/ Maija and I have known each other for about half our lives (*choke*), since way back in the day when she dreamed of being a writer and I dreamed of stealing her answers on Sir Gawain and the Green Knight. She still is an amazing writer, as you'll see if you snoop around her blog a bit.

Speaking of famous, Kingsley and Cordelia have once again decided that showing off on websites and on letterheads is a bit too run-of-the-mill for them. So, now they are in a commercial spot for a fundraiser for our centre.

I think that about sums up the excitement for right now. In business news, Kingsley's having some wonky urological things happening again, but his head banging stopped as soon as his pesky molar popped through. We even had a few days where he was babbling up a storm and all those lost consonants were back. Constantly keeping us on our toes, this one. Four more days, then we'll see.

Round Three?

2011-12-03T23:05:00.001-05:00

The MRI is booked for December 15 with a follow up appointment on December 21, temporarily. They're still working out times since they want to do a full head and spine and that will take two appointment slots instead of the one they had originally planned on.

In the meantime, I have at least a dozen points in every day where I am convinced that we cannot possibly wait that long, something is wrong NOW. And then I have at least a dozen points in every day where I am convinced that I am overreacting because Kingsley is clearly as awesome as ever and not a thing is wrong with him.

Our concerns are that he had some sudden bowel and bladder changes in late September, followed by some rapid tightening in his hamstrings and odd twitching in his calf (tethered cord). He's also banging his head and grabbing/hitting his ears (shunt). He's waking at night, crying and he's much more irritable than his usual cheerful self (shunt). He's sleeping less and is eating less (shunt/Chiari). His language peaked and then has regressed, yet again (no clue). He's arching backwards in his Bumbobile and stander (Chiari).

On the other hand, he's teething and has been for about a month. His molar FINALLY broke through last night. He grabs both ears equally (his shunt is behind his right ear) and hits his head when he's frustrated, not really out of the blue (common in kids without language). His bladder stuff is all back to normal, his bowel stuff resolved when I dropped his PEG dose a little bit. He's fascinated with exploring his world now in both sets of wheels and seeing it from all angles - now that that is finally possible. When I'm with him or the girls are home, he's his usual self. When I go check to see why he's crying at night, he's all smiles and snuggles the second I get him in the rocker with me.

I just. don't. know.

While I am not remotely looking forward to putting him through another MRI, I am anxious to get answers. My house is benefiting from the stress, but my wallet is not. ;) I'm blazing through my list of Things We Need Done Before We Move. Christmas shopping is nearly done and if all goes well, the Christmas tree/decorations will go up in the next couple of days. I need the distraction or my mind takes me to places I can't function in. It doesn't matter. Either he's fine or he's not fine, but he will be.

Tomorrow, we meet Santa. I predict a lot of screaming. :)

All I Want for Christmas...

2011-11-30T22:46:00.001-05:00

My two nieces and my sister watched Never Say Never, the Justin Bieber movie. And when I say 'watched' I mean they had it on Netflix and watched it about a dozen times in about as many days. And when I say 'a dozen' I really mean three. They became big Bieber fans. So, when I was at Costco a couple weeks ago I was thinking of them and I grabbed Justin's new Christmas CD with the intention of listening to it a few times and maybe ~~ripping it for them~~ passing it on to them. However, it turns out my nieces aren't the only ones who love "Justin Beaver" because all three of my children have clung to this CD like it's the best music in the world and they insist on listening to it all. day. long. Truthfully, I don't mind. I love Christmas music and if you haven't heard the CD it has a remix of Mariah Carey's All I Want for Christmas which is one of my favourites.

Over the last couple of weeks while this CD has been on repeat, the words of all of his songs have blurred together and played in my head even when it's not on. There's one message that comes up over and over in so many of the songs: All I want for Christmas is you. Tell Santa I'm good this year, my present is standing right here. If you're the only thing I ever get for Christmas then everything I've wished for has come true. I realize Biebs is probably singing about a girl, but when I hear these words, I look at the kids and I think: YES.

I have been walking around the house, just savouring the drawn out Holiday buildup. The lights are up outside, Buddy the Elf has returned, the mail has gotten really exciting, we're going to put the tree up this weekend, lists are being made and checked twice, pictures are done... we're in the Christmas spirit and there's this feeling of just soaking it in and enjoying it all. A true appreciation that we are so incredibly lucky to all be home, to all be healthy, to all be together.

When I was thinking last week about Kingsley being in the hospital a year ago, I remember the rush to do things in the week leading up to his surgery. I remember doing my online shopping from beside his hospital bed. I remember the heavy reality that with one sudden fever, we could be spending our Holiday season in the hospital instead of at home. Getting released on December 2 was one of the best Christmas presents ever.

And the year before that with the sudden scare and hospital stay mid-December before he was born.

We just don't have a lot of luck with this month. Kind of like September.

Which is why I have one wish for Christmas. Just one.

I want Kingsley to be home.

Because what I didn't want is for his PT to have concerns about his legs. And I didn't want the concerns of September to be brought up again. I didn't want to see their faces when I mentioned some things I had noticed. I didn't want to see the look on my moms face when I told her the concerns that people are mentioning and see that she has the same concerns.

I don't want to hear back from the neurosurgeon and I don't want to know what the inevitable MRI is going to show. I want to continue appreciating that we are all home together and not subconsciously start planning how we are going to get through this month if we get bad news and have to be split up.

It could be nothing. It could all just be explained by... something else.

Or these changes could all be related.

I think we might need a Christmas miracle on this one.

Rifton Dynamic Stander

2011-11-26T15:43:00.000-05:00

Yesterday, we picked up Kingsley's newest set of wheels: a Rifton dynamic stander!

It's fantastic.

As soon as we walked into the room to have it fitted for him, Kingsley was wiggling to get out of my arms and get in it. He literally would've pushed himself off the bench and wiggled across the floor to it if I would have let him. When we held him up and started strapping him in, he immediately was trying to release the brakes and get going. And once we did release the brakes and let him go, his smile was HUGE. Ear to ear, nonstop, ecstatic smiling from my little boy, the kind of smiling that just makes a roomful of adults melt and makes you forget how expensive this little piece of equipment is. Worth every penny.

He immediately generalized his wheeling skills from the Bumbobile and wheelchair trials to this. The wheels are obviously much bigger and a bit lighter to roll, so it took him a little while to really learn to control it. His laugh when he realized he could push and coast was contagious. He also realized he could spin and just kept spinning, laughing, spinning, laughing, spinning, laughing... We had the whole store out watching him roll around, grinning like it was Christmas morning.

King was quite upset when we took him out of his stander and was so excited to get back in and show off for Jeff when he got home. He's also enjoyed exploring the house from a little bit higher. Drawers are very exciting.

The folks who we bought it off of said that they've never fitted a kid so young for a dynamic stander or for a wheelchair for that matter. He said that parents and therapists are usually not yet ready at this age. It's too bad. I can't imagine how boring life would be for Kingsley right now without his wheels.

The Big Scar

2011-11-26T15:21:00.000-05:00

I do have some exciting things to post about, but before I get to that, I just wanted to post a couple pictures of Kingsley's decompression scar. My last post had a big ugly picture of his scar at a couple weeks post-op. It's dreadful, isn't it? It's my own son, my amazing rockstar and it still gives me the shivers to see that enormous, raw scar down the back of his head and neck.

This was just before getting the stitches removed.

This was just after getting the stitches removed

Fortunately, it looks nothing like that now. I wondered for a long time how it was ever going to heal and become less noticeable or if people would forever be staring at the back of his head. It did! I think the only people that notice it now are the people who cut his hair, but even they have never mentioned it other than to spend a few extra seconds parting and brushing in the back when they think I'm not looking.

So, for those of you who don't often get to see Kingsley's head in real life, here is how it looks now:

It's so amazing what the human body can do, isn't it?

One Year

2011-11-24T15:12:00.001-05:00

One year ago right now, I was in this room

After putting my baby on a bed and watching him go rolling through these doors

I was holding my breath, heart in my throat, not thinking, not thinking, not thinking about what was happening.

Watching the clock tick on, minute by minute, hour by hour.

Waiting to run and see my baby.

It's strange how much this anniversary has been on my mind. Although we obviously are not celebrating, it's so fitting that the one year anniversary of Kingsley's decompression surgery is on the American Thanksgiving, because I do not have words to say how thankful I am that one year ago his surgery went the way that it went; that I didn't think on that day about what could have happened, what almost happened, and what would have happened. Those are all the things that I'm able to start thinking about only now and it terrifies me.

It wasn't Kingsley's first surgery and it wasn't his last. There's no guarantee that he won't need another decompression at some point. He'll need to have surgery for his shunt again. Maybe many shunt surgeries. There's a good chance he'll need more detetherings. This is our reality. Not having those surgeries would mean not having Kingsley, which is something I can barely wrap my head round. And so we go through it.

But right now, today, he doesn't have to. Today, we went swimming and he did amazing. He paddled with his arms, floated on his back by himself, and blew bubbles. Today, he asked for (and received) hug after hug after hug. Today, he had two candy cane cookies for lunch, because he wanted them. Today, he smiled and played and pulled his sister's hair. Today is one more day that SB takes a backseat to life. We are so grateful for that.

We Met

2011-11-14T23:11:00.000-05:00

I know you're all dying to know ;)

So, on Saturday our little clan all headed out for the SB workshop day at our centre. It was great! It consisted of a few information sessions on the anatomy of SB with levels/functioning information (check, check, memorized that bad boy last year), a discussion on equipment (which featured pictures of Kingsley in all of his various equipment pieces).

Probably the one piece of equipment we were not yet familiar with there were RGO's (reciprocating gait orthotics). For those of you who aren't in the SB world, I have no idea how to really explain them, as I never fully understood them until I saw them. They're basically bracing that goes up to the chest and if the person wearing them tips their chest backward, it pushes one of their feet/legs forward and mimics a walking motion. I think. I may be confused still. I only mention this because we've been looking into them for Kingsley down the road. They wouldn't mean functional walking like most of us do, it would mostly be for exercise and experience.

There was also discussion of hydrocephalus and shunts (check!), chiari malformation (check!) and tethered cords (check!). It made me realize that Kingsley is really making the most of his SB experience, haha. During this talk we got to see a SB doll. For real - a doll! It has SB, hydro, a shunt, Chiari and can have all kinds of spinal issues. You can even cath it and make it a boy or girl. I can't imagine ever needing one of these dolls myself, but it's cool to know they exist.

There was a presentation on the bowel/bladder issues. Nothing new their either! And a discussion of recreational activities for kids with SB. That was cool to hear about different things that are available in our area.

But my favourite part of the day was talking to other families. The day was geared toward kids with children 3 and under. I think there were 2 three year olds, 1 two year old, Kingsley, a 9 month old and a 6 month old. I feel like I'm missing someone here.... Maybe not. They had two families, one who we adore who has a son a year older than Rachel and the other who have a 15 year old son named Eric. Meeting Eric and his family was amazing. I imagine it would be the local equivalent of meeting Aaron Fotheringham. Eric is a wheelchair basketball superstar and he also plays sledge hockey. He and his parents were just so... reassuring. I sat there listening to them and thinking: THAT is the kind of family I want to be! They were just awesome.

We also had the chance to meet and talk to the other families there and a representative from the SBHAO. All of our kids were pretty different, but all definite rockstars. All in all, a very good day. I am really hoping we can do things like this more often!

Tomorrow, We Meet

2011-11-11T22:08:00.000-05:00

You know how last May I was thinking that I was seeing people with SB everywhere I looked? Even right on my own street? Well, haha! Turns out I am not hallucinating after all!

Since May, I have met four families with kids with SB. Four! Bringing my total to six (including Nick and a baby girl who we met, but who don't live that close to us). It's nice. Rather awesome, really.

For starters, the girl on my street that I thought I saw really does live on my street and she does have SB. She's a gorgeous kid who walks, runs and has a smile that lights up the world. I spotted her a few times getting on and off the accessible school bus that stopped in front of her house. Then, one day King and I were playing in the front yard and she and her sister were outside and I saw my chance. He was testing out a wheelchair then and headed down the road in their direction. She looked up and saw his wheels. Her dad came out and we ended up chatting for awhile about everything. It was incredible to think that for two years we've been immersed in this world, never knowing that we had guides just four houses down.

The wheels really are a great ice breaker. I take the girls to dance class every week and while there a little boy with a walker came racing (no exaggeration) into the foyer and zipped around like he had boosters on that walker. I happened to have Kingsley there with his wheels. His mom saw Kingsley and came over to see what kind it was. I suspected from the way he walked that her son had SB so I said that Kingsley did and there ya go! One more family in our little network.

The big exciting thing though is that tomorrow our centre is having a SB networking and information day. The first of it's kind since before Kingsley's diagnosis. I've been told that there are 7 or 8 families, all with kids with SB age 3 and under. All in one place! I can't wait.

Awesome, Awesome, Awesome

2011-11-09T22:43:00.000-05:00

"I don't know how to ask this, so I'll just say it..."

"I hope this isn't a stupid question..."

"That's amazing... I don't get how it happened."

"Yeah, explain that to me, I mean it's awesome, I just... how...?"

"So... I saw your Facebook status. How did he do it??"

It's okay, everyone asked. ;) The other day, I posted on Facebook that Kingsley had pushed himself up onto his hands and knees and then posted a picture of him there. I got a lot of texts, emails and phone calls. Everyone was really excited, but no one knew how it was possible!

The truth is, I have no idea either. He just did it.

He's been rocking from sitting in a cobbler pose to leaning forward on his hands, then back, then forward, over and over. Sometimes, one of his feet will pop out behind him (think of a really early pigeon pose if that makes sense to you) and then he won't be able to rock back and he'll be stuck until I rescue him or he wiggles the other leg free and flops down onto his belly. That's part one.

While all of that has been happening, we've been working in PT on getting him to increase his arm strength by putting him on his hands and knees and having him hold himself there. He has gone from holding for about half a second to holding for about 30 seconds. He's so strong!

Add those two things together and out of nowhere, five days ago, Kingsley went from cobra to table! He just pushed his hips back. He even rocked a bit, like how babies do. I was... ecstatic. I think it was a combo of his abs and hip flexors working and AFO's digging him into the carpet so he didn't slide backwards. Amazing!!

Once he got there, he screamed. Loud. I think it freaked him out.

Or maybe it was my screaming that freaked him out, who knows. ;)

Well, that was exciting, what can top that, right? Ha. Pssssht.

Today, Kingsley and I were working on it again, trying to cue him to push his hips back again and get his belly up. Once again, he was hollering while up on all fours, but then he started moving his hands in under himself and I got a brilliant idea. We worked on that for awhile. I got Rachel all set up recording it on the camera...

Sorry! The video is lousy, Rachel's five, what can I say? She doesn't get lighting angles yet ;) But, he's pushing himself up all by himself, my hands aren't touching him.

Over and over and over I ~~tortured him~~ helped him do it. Then I gave up and let him relax, left him on his belly to play with a toy. I looked away to get the camera, put the cap back on and when I looked over at Kingsley again, he was PUSHING HIMSELF UP INTO SITTING ALL BY HIMSELF!!!

Tears! Screaming! Cheering! And a chocolate bar that Kingsley inhaled in about 5 seconds. I tell ya, for a kid who doesn't like to eat, he sure can hoover back a mini Hershey's.

He wouldn't repeat it, but I'm still giddy over seeing him do that. Unbelievable.

And on that note, I want to link you to something that has stuck with me since January. Cassie is another mom blogger out there. It's funny how you can feel so close to someone you've never met, isn't it? Cassie is a huge source of encouragement for so many of us mom's of younger kids with SB. Her son Caleb is 6 and he defines Rockstar. Cassie was constantly telling me that Caleb was just like Kingsley once. Caleb took a long time to get where he is. Caleb wasn't always a walker. I have to be patient, Kingsley will show me in time. Then with this post, she showed me what she meant: http://themclellands.blogspot.com/2011/01/taking-scenic-route.html Rarely does a week go by that I don't think of this post at some point or another. I have no idea where Kingsley will end up or what he will accomplish, but reminders like this and days like today make it very clear to me that I can never say never.

that's for you Kris ;)

Halloween!

2011-11-09T21:37:00.005-05:00

Oh, hush now. I know Halloween was a week and a half ago, but I had good reasons for delaying this post.

Firstly, as usual my kids were stinkin adorable and had a blast. We did Mall-O-Ween with our friends and Grandma as we do every year. It was not lost on me the irony of the pain I was going through a year ago, accepting the fact that Kingsley would be a wheelchair user, when this year I was incredibly annoyed that he didn't have a wheelchair to use! Instead, the poor kid just watched his sisters trick or treat from the stroller where he sulked and had Elmo try to eat his head.

After a quick dinner, I took the kids out on our street. Without suitable wheels for Kingsley to push, I carried him. And it started to rain. So, Kingsley went to the two neighbours who would be most excited to see him/us and then he went home to hang out with Daddy while the girls and I did the rest of the street. He was adorable - my little Elmo zipping to the door in his Bumbobile every time the doorbell rang. ;) He doesn't eat candy anyway.

But! The really exciting thing is what will happen next year for Halloween. See, the week of Halloween, we ordered Kingsley's first wheelchair and a Rifton dynamic stander. Which means that next year, Halloween will rock here! I am inspired by a few mom's in my circle who make a kid on wheels the coolest thing ever. Have a look here at Caleb: scroll down, scroll down, scroll down... BATMOBILE!! Scroll down a bit further and you'll see his incredible costumes from the last three years. Then there's Greyson who is the most ridiculously cute astronaut I have ever seen http://ourlittlegibblet.blogspot.com/2011/11/grey-astronaut.html And then there's Nate the construction worker. I mean, come on!!

Kingsley has some big wheels to fill, but I think we can do it.

I may have to start planning now.

Boots

2011-10-29T17:02:00.000-04:00

Footwear has been an ongoing challenge for Kinger. For starters, his ballerina foot makes it hard to get shoes on at all and then they just fall off if not incredibly tight. Second, he doesn't have control of his feet, so it's similar to getting shoes on a doll. Third, he has very small feet for his age. Really small. And lastly, for months he had just the one AFO and now he wears two. Those suckers are hard to get shoes over.

In warmer weather he just went barefoot a lot or just wore socks and AFO's. Last winter he had Robeez booties and a one piece, footed snowsuit so we never worried about anything more.

This fall, we have challenges. It is getting cold here and even though he won't be running around in the snow and rain, he does need something to keep his feet warm because I'm finding they're cold a lot. He has his cute Elmo Robeez, but they aren't warm or weather resistant.

I started asking around and today, I bought him the best. boots. ever. They are made by a company called Stonz Wear and although they are not marketed for kids with AFO's, they should be! They're a wide boot that you essentially just slide over the foot and then cinch at the ankle and/or the top to hold and form a 'boot' look. No wiggling or stretching over, they just pull straight up when his foot is flat. They're warm, water resistant, Canadian made, and cute!

I am in love.

Even better, because Kingsley's feet are so small he only needed a size Medium, which means he has two more sizes up before he outgrows the booties.

And even though I wasn't really looking for any, I also found a pair of super cute shoes that fit over his AFO's really well also made by WeeSqueak. The velcro straps open right up (why do most kids shoes not allow that to happen easily?) so the shoe is open to the toe.

I love happy endings. :)

Words To Live By

2011-10-29T16:24:00.000-04:00

(get it? because he doesn't talk, but he totally rocks)

It's Time to Say Farewelmo

2011-10-22T00:06:00.000-04:00

If you asked me in highschool what I wanted to do when I grew up, I would say I wanted to work with children with special needs. If you asked me in first year, second year, third year university I would've said the same. I had no idea where, how or what population specifically, but that was all I wanted to do. In fourth year, I was introduced to behavioural therapy for children with autism and all the pieces came together (get it?;)). I had found my niche, I had found my future.

Unfortunately, I ran into a little issue called nepotism which severely limited my ability to find a full time job in my career choice once Jeff and I moved back here in 2005. Call it destiny or kismet or I don't know what, but one day my sister called me up to tell me she saw a job ad for the job I had been going on and on about. It was down the highway in a different region. The one time that agency ever posted an ad in our paper. I got an interview. I got a call. I got the job of my dreams.

People often asked how I could possibly commute to work over an hour each direction, every day, every week, pregnant (because I usually was). It's easy. I am one of those rare, fortunate people who can honestly say that I love my job. I want to go. I like being there. I have people that challenge me, push me, believe in me and take chances on me. My clients are fantastic. My staff is amazing. Yes, sure, there are days where we need to close the office door so no one hears me swearing and we learned pretty early on that if we didn't laugh we'd be crying, but even the ability to do both make it a great job. The biggest constant in the autism world is change and that keeps things interesting.

I know, here's where you are scratching your head thinking: Um, Jill. You don't work. You're at home with the kids. Yes, that's sort of true. I had my one year maternity leave after Kingsley was born and then asked and received another year off to be home with King during his second year (which started off pretty insanely). I haven't actually worked in 22 months. My return to work date is in exactly two months, but today I drove with Kingsley and Cordelia into work and handed in my letter of resignation.

It was a lot harder than I thought it would be. It's so final. I just gave up my dream job.

It's not that it would be impossible to work full time with a child with SB. People do it all the time. We could have made it work if we had to. It would have been hard to do with a child with SB who has two older siblings who are in part time pre/school, though. I don't have any regrets, I know I'm doing the right thing. I love being home with the kids and getting to spend this much time with them. The stress of juggling the daily routine, plus therapy, plus appointments, plus the constant worry that I was missing something... I couldn't do it. I will do it again at some point, but not yet. For now, I'm putting down my data sheets and picking up Elmo.

I'll miss you guys.

And you know I'm not serious. I still have my data sheets. ;)

Strong and Silent Type

2011-10-20T23:03:00.000-04:00

So, Mr. Kinger is digging his heels in now about this talking thing. He was cruising along, doing just fine, did the babbling, picked up a few signs, was able to effectively tell all the nurses last winter NOOOOO, BUH-BUH and do the frantic 'all done' with his hands. He said Mama, Dada, Nana and had a running list of other approximations. He imitated... things were coming right along.

Then he stopped.

What is with my boy and regression? As of 18 months old he was doing just fine, despite not talking much anymore. Just as long as he didn't continue to regress, we were okay. He hasn't regressed any further. Problem is, he also hasn't made any gains. I think there comes a point nearly every hour where I pause the thoughts in my head and remind myself: THIS WILL COME. ... right??

*sigh*

I keep saying it's just because he's working so hard on everything else. He's doing some ah-mazing gross motor gains, his eating is trucking right along, his play and problem solving skills are flying. When I look at everything he's learnt to do in the last 4 months, I'm in awe. Everything but talking.

I KNOW he can talk. He has talked. He will talk again. He will talk more. I'm good at this waiting thing now.

While I wait though, I figure we'll give him a little push. I have started taking this course called The Hanen Program. I'm not going to lie, it feels a little weird being on this end of a parent education series after leading so many. I have to consciously stop myself from critiquing teaching style or making comments like I would if I were co-teaching. I am there to learn. I must stop telling myself that I know all this. If I knew it all, Kingsley would be talking, right? It's always the annoying know-it-all parent who is doing the most obvious no-no's. ;)

I think this is him subtly telling me to leave him alone

Good news. When we started, Kingsley was saying Mama, Dada, Da-Du (Rachel. And Cordelia actually), and signing all done. Three weeks in, he now vehemently shakes his head no while saying, "Ooooooooooo!!!!" and says ma-meh for movie (Elmo on the iPad). I'll take it. By Christmas, he'll be reciting sonnets.

Maybe.

Bracelets

2011-10-15T11:52:00.000-04:00

For a long time I didn't want to admit this because I thought it was kind of weird, but then one day chatting with other moms like me I realized I am not alone. I collect hospital bracelets. OK, maybe not collect, but I keep them. All of them. Not just the new baby ones with BABY GIRL BELL written on it, but also the big red ALLERGY ones that Kingsley gets and anything else they put his name on.

I have quite the collection. Cordelia has only 4 bracelets from when she was born (including mine and somehow the one that is supposed to set off the alarm that managed to come home with us). Rachel has her birth ones, plus one trip to the ER when her whole face swelled from a mosquito bite. Kingsley has his collection from his birth, his two MRI's, his two surgeries, one ER visit for a shunt scare and now a second ER visit from last night. Lucky boy.

No worries, everything is okay, but we had a big scare! Just as I was about to head up to bed last night, I heard the strangest strangled cries from upstairs. I had to stand in the hallway for a few minutes before I could figure out whose bedroom to go into, as it didn't sound like any of my children. It was Kingsley.

My first thought was that he was choking. He couldn't breathe and was making the most horrible noises as his whole ribcage struggled to get in air. I scoured his crib, looking for any signs of what he could've been choking on. Nothing. Raced him downstairs and out the door for cold air. No change. Panic.

He wasn't crying, seemed totally relaxed about the fact that he could hardly breathe. I think that was what scared me the most. He just wasn't sick. If this was croup, wouldn't he be sick? And if it wasn't choking and wasn't croup, what was it?

That's where the mind flies to 'complications'. Things related to SB. Stridor is a symptom of Chiari. You know, that big bad thing he had that big bad surgery for last November? My mind went there. Jeff's mind went there. When I woke up my poor mom in the middle of the night, her mind went there. I don't have a clue how or why he would suddenly have Chiari symptoms again, but in the middle of the night it doesn't really have to make sense - I raced him to the ER.

About halfway there, his breathing quieted. I could still hear it from the front seat, but I had to listen for it. Thankfully, the nurses and doctors we saw did a good job of not laughing at my panic as they diagnosed him with very mild croup, gave him a dose of steroids and sent us home. Turns out, you can have croup without being sick. Who knew? They did say that if the stridor continued longer than croup would to come back and we'd investigate other stuff. He's doing great today. Some normal coughing, but his breathing is fine.

One more bracelet for the pile.

Our Centre

2011-10-14T22:12:00.000-04:00

I don't know if I ever mentioned it before, but I pretty much grew up at the children's centre in our city. My mom worked there for decades. I remember playing with the toys in the therapy rooms, waiting in the lobby for her to come out, and of course attending all of the picnics and fundraising events over so many years of my childhood. When I was in grade 8, my mom decided I was old enough to start volunteering there, so I did. Eventually, they started paying me and I did various lifeguarding and contract positions there until 2001 when I moved out of the city for a few years.

When we were first told that we could be referred to the SB team at the centre, it was like someone had tossed me a life preserver in the ocean of chaos we had found ourselves in. Yes!! Send us there! These were my people. I knew them, I trusted them. It was like going home. Some of these people had seen me grow up, they knew my parents. I've worked with them, I've gone to school with them, I've even babysat their children and had some as guests at my wedding! I'm pretty sure I know people in nearly every department in that building from one phase of my life or another. I sometimes joke that I can't leave an appointment there without giving myself a 20 minute time buffer to chat with whomever we happen to run into on our way out. To say the people working there are awesome would be an understatement.

Over the last two years, we have just taken advantage of every opportunity they throw at us. Kingsley and I do playgroups for babies/toddlers that they help run, we do swimming lessons (for him, I already know how to swim ;)), we go to clinic there, we receive PT from there, we've gotten Kingsley's splints from there. After Kingsley was born, Jeff and I attended a group for new parents of kids with special needs through them (where we met some amazing parents that we still keep in touch with). We've also received a ton of equipment from them on loan for various reasons and of course they made Kingsley's fabulous Bumbobile! Once a week I take Cordelia and Kingsley there for a playgroup that they attend while I sit around chatting with other moms, which is a much needed sanity break for me and the kids.

Do we love this place? Oh, yeah. :)

So, when they ask us for something in return, I am quick to say yes.

First they asked if I would mind being interviewed about the importance of playdates for my kids and myself. Not at all! So, during one of our restful mornings there, I was interviewed with another mom and they took some pictures of our kids for the article. The article isn't online yet, but we have the hard copy. http://www.abilities.ca/ (incidentally, Aaron Fotheringham was on the cover that month!)

Then, they decided that the picture was pretty cute and asked if they could put it on the homepage. http://www.tvcc.on.ca/

Cordelia will one day hate me for saying this, but she is absolutely head over heels for this kid. She carried this picture around and 'introduced' him to all her dolls with big sighs and swoons. She doesn't even acknowledge that Kingsley is in the picture. He is pretty cute ;)

Next, we were asked if Kingsley would like to be one of the faces on the advertisements and website for one of the centre's biggest fundraisers and just like that we had Christmas in June and Kingsley was decking the halls for the Holiday Home Tour: http://www.holidayhometour.ca/index.html (a fabulous event if you are in town).

And if that wasn't enough, I was asked if we'd like to have him featured on the annual mail outs that go out to people who will (hopefully) make donations to support some of the awesome non-government-funded programs at the centre. Of course, we said yes!

I may be slightly biased, but I was immediately compelled to make a donation when I saw that handsome face.

They do so many amazing things at that place. We are so lucky to have somewhere to go for not just the support, the programs, and the equipment Kingsley needs, but also the laughs, the reassurance, and the hope they inspire.

Thankful!

2011-10-08T23:20:00.000-04:00

It's Thanksgiving weekend and so far, it's all kinds of fabulous.

We've had a change in weather from rainy and cold to blue skies and warm breezes. Heavenly. The weather has made us run outside to enjoy the change in seasons before the gross November weather hits.

And since we were outside anyway, we took our fall pictures! My friend Silvia and I have been doing this for four years running now. We are not photographers or anything and honestly, we take nearly 1000 photo's between the two of us and magically end up with about 50 that make us look really talented ;) Toss in some fancy editing and we've got shots for the walls.

2008

2009

2010

...and this year!

Who is this little man??

A half a second after I took this picture, Cordelia turned around crying because Kingsley didn't want to hold her hand, just Rachel's. She was devastated.

(I tried to get one of Kingsley like these in the leaves, but he wanted nothing to do with it. Just screamed until I helped him sit back up)

If you've been keeping track of Kingsley's development over the last year and a half (and why wouldn't you be?? ;)) then you'll notice something incredibly exciting about that last picture. Yep - check! - Kingsley can officially sit on his own now. Two hands up doing stuff, back nice and tall, nothing behind him 'just in case'. He takes his time, but he gets there. I am very thankful for that. :)

My Friends

2011-10-03T22:13:00.001-04:00

Hi there,

It's me Kingsley again.

You may not know this, but I'm a pretty popular guy. I'm not even two years old, but I've got a big posse.

I know you think I'm pretty cute and I'm a medical marvel and all of that, but you should meet my peeps.

Mommy says it's SB month in the States. I don't know where that is.

Because it's SB month, lots of people are talking about some of my friends. They want you to meet them, too, so you see that I'm not the only cute little guy with SB. There are loads of us. Some are like me, some are not. Some have had lots of surgeries, some have had only one. Some even had surgery before they were even born! Some walk, some run, some wheel.

Mommy says that we're all rockstars.

So, go meet my friends. Tell them I said 'hi'. Don't be shy, they're friendly.
You might want to check back and see when I get to be Rockstar of the Day.

http://themclellands.blogspot.com/
http://atalw.blogspot.com/
http://spinabifidakids.blogspot.com/
http://carsonscorner09.blogspot.com/
http://simplysoares.blogspot.com/
http://www.facebook.com/media/set/?set=a.10150319186417514.342608.510082513

Love Kingsley

Awareness Month Deja Vu

2011-10-01T00:01:00.000-04:00

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby: http://thelittlekingsley.blogspot.com/2009/09/diagnosis.html In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine! http://thelittlekingsley.blogspot.com/2010/01/hes-here.html

The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life. http://thelittlekingsley.blogspot.com/2010/02/kingsleys-video.html

And then you live.

You have good days http://thelittlekingsley.blogspot.com/2010/06/rockstar.html and bad days http://thelittlekingsley.blogspot.com/2010/06/stop-ride.html and sometimes even worse days http://thelittlekingsley.blogspot.com/2010/09/heavy.html

You go on vacation (imagine that!) http://thelittlekingsley.blogspot.com/2010/06/kingsleys-first-vaca.html Yikes http://thelittlekingsley.blogspot.com/2010/08/three-kids-three-days.html

You live http://thelittlekingsley.blogspot.com/2010/10/living.html

Your other children continue to live http://thelittlekingsley.blogspot.com/2010/10/spidipida.html

You have blips http://thelittlekingsley.blogspot.com/2010/12/kingsleys-decompression-with-music.html

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours http://thelittlekingsley.blogspot.com/2011/05/best-case-scenario.html

This is what it's really like to live with a child with SB http://thelittlekingsley.blogspot.com/2011/06/living-part-2.html

Your family will thrive http://thelittlekingsley.blogspot.com/2011/06/other-kids.html

And you will become more aware http://thelittlekingsley.blogspot.com/2011/06/awareness.html

Oh, September, How I Hate Thee...

2011-09-29T20:54:00.000-04:00

I had four days left in the month, just four short days and we would've been free from the grips of the Month That Hates Us. Unfortunately, I noticed some strange things with Kingsley...

OK, I'm getting into stuff you may not want to read about. If pee-pee talk is gross, skip ahead to the picture of Kingsley while everyone else reads on ;)

Last warning.

OK then...

So, Kingsley started wetting his diapers. A combination of meds and bladder things means that Kingsley doesn't often wet his diapers and if he does, it's not that much. But three days in the past two weeks, Kingsley has SOAKED his diaper at night and actually even leaked. Daytime diapers were also noticeably wet. So strange. He has even peed on me three times which he's done a total of twice in his entire life before this.

Naturally, I emailed one of his nurses thinking I'd just give them a heads up, figuring maybe he just needed a med adjustment or something. Instead she asked if he could have a UTI or said maybe this was a sign of a re-tethered cord.

Wahn-wahn waaaaaaahn... As Rachel would say. Obviously, not what I wanted to hear.

Bowel and bladder control are at the bottom of the spinal cord, so they are often the first to change when something is happening. If his cord is retethered and is causing problems, he'd need to have another surgery like the one he had in February.

(the Elmo-thing sort of caught on. ;) this smile is brought to you by the letter E and the number 1... and the fact that Elmo's World had just come on TV the moment before I took it)

We could still be fine. I've taken in a sample to be tested for an UTI and I'm waiting and hoping it's just something minor like that. Or maybe it'll just go back to normal and be a random blip. Or maybe he really does need a medication alteration. Or maybe the September curse is hitting us again and this is the start of another very stressful autumn. Or maybe he'll restore all functioning starting down here at the bottom and working up?!?! Oh, come on, I'm allowed to still believe in miracles. ;)

While I wait for results and try to figure out what comes next, we are doing some fun stuff around here! Kingsley is blowing my mind with some of the awesome things he's been doing lately. Have I mentioned that he's a rockstar? Yeah, he is.

Cottage

2011-09-27T13:25:00.001-04:00

One of the best things about living in southwestern Ontario is that we are smack in the middle of a triangle with lakes on the left side and the bottom. 30-90 minutes in one of those directions and you hit a beach. Lots of beaches. Gorgeous beaches. With beaches come cottage towns.

I think at some point in most adults lives (in these parts anyway), there will come a time where you sit down and contemplate: can I buy a cottage? Often 'cottage' is substituted with 'boat' or 'trailer' or 'camper' because those are equally awesome summer accessories, but for us it's always been cottage. Jeff and I have talked about it and decided probably not. But, growing up we rented a cottage for a week or two every summer and that seems to be the tradition we're going to continue with our family.

This is one of those things that upset me quite a bit when we got Kingsley's diagnosis. This dream of summer time spent at the beach seemed to be crushed. How could a kid on wheels hang out at a cottage?? Enter: blogs. Seriously, other bloggers have saved our summer. If THEY can all take their kids to the beach, what am I all worked up about? ;)

Last summer, we rented a cottage with my sister and her kids. It was your typical tiny, shack-ish cottage right smack in the best location ever. Kinger was only 6 months old at the time, so not any big difference between having any 6 month old baby hanging out with you at the beach. This summer, we had to think a little bit harder to find the right place, but WOW did we ever find it!

Our cottage was not actually a cottage. It was a 5 bedroom bungalow just a short drive from the beach. It came equipped with everything you could possibly want in a cottage vacation: fire pit, trampoline, hot tub, volleyball net, horse shoes, bikes, toys, TV/DVD, on and on... Completely unreal. What really interested me was the open concept, lack of carpets and the long, level driveway. It wasn't perfect - there was a hill in the backyard, the entry ways all had stairs, it was a bit of a walk from the van to the beach, and the bedroom/bathroom doors were all standard width, but it was as close to perfect as we could've wanted.

We had a fantastic vacation at the beach. What meant the most to me was the realization that concern over what Kingsley can/not do did not have to interfere with what the girls would want to do. Some things, like the sand dunes (a huge wall of sand that you climb), Kingsley would not likely ever be able to enjoy, so we took the girls during naptime. Likewise, the playground nearby was not accessible, so we hit that during a naptime. But the beach, the restaurants, the market, walks in the neighbourhood, and campfires were all a go for Kinger with some help from us. All three of them had the opportunity to experience the best of cottage life, which is just the way it should be.

Family memories - check!

(OK, I know, I know. It's the end of September and yes, we did go to the cottage at the start of August, but better late than never! ;))

Another Check

2011-09-27T09:52:00.001-04:00

Slow and steady, this kid is. I realized he 'should' be learning to eat with a spoon on his own. He'd never reached for the spoon or had any interest in it so it hadn't occurred to me! Bad mom ;) So, I passed him over the spoon a few times and at first he looked at me like I was crazy and tossed it. Then yesterday, he picked it up and just started eating.

Sometimes, I wonder what other skills he's just sitting on, sneaky kid.

The MyOn

2011-09-15T23:12:00.000-04:00

Kingsley is doing awesome with his temporary wheels. His steering needs a little work and he's easily distracted by ... everything, but he appears to be enjoying himself once he gets going.

I brought him to the mall today and he experimented for awhile in a few stores. His favourite thing to do seemed to be rolling into clothing racks.

I guess he looks older on his wheels because people kept talking to him and expecting responses. I realize he is 20 months old now, but no, he cannot tell you his name, how old he is, how his day is going or how much he likes hanging out with his mommy. ;) He will smile at you and get all coy though.

In Case You're In Town...

2011-09-14T20:54:00.000-04:00

Equipment

2011-09-13T23:27:00.000-04:00

I'm so behind. Kingsley has had a cool summer where we've made some big leaps forward with equipment.

First, a boring one. We realized that since his detethering surgery when he regained the ability to bend his right leg (but not straighten it back out), he pretty much prefers to have it bent in. It was getting tight, so we got something called gaitors (which could be spelled wrong, I have no clue - gators? gaiders?). They're basically wraps around his legs that prevent him from bending his knees. He wears them to bed every other night. He has learnt to do all of his wiggling/rolling at night in his crib, so we didn't want to hinder that too much by having him wear them every night. They're working really well and his legs are able to stretch out nice and straight much easier again.

A few weeks ago, we went and had a consult with Seating and Mobility at the centre and ended up bringing home a wheelchair to try for a week. He did not love it all that much. He wasn't overly motivated to move. He was able to quite easily, he just didn't. From there, I looked online at a few different wheels and tomorrow we are going to the dealer (rep? the guy that sells this stuff) to try a couple out. I kind of have my mind already made up on the Zippie Zone, but I'm still interested in seeing the other options.

We also had a consult for mobile/dynamic standers (imagine a wheelchair where you stand up or wheels on his standing frame)! We tested a Rifton and a Rabbit. Kingsley was a ROCKSTAR! He was so geared up just watching the rep set them up. He kept giggling and trying to lunge out of my arms toward them. When we held him up to strap him in the Rabbit, he immediately reached for the wheels and started to push. Luckily, the brakes were on, but once we took them off, he was gone. Odd, how much more interested he was in this than the trial wheelchair. He loves being in his stander, so maybe it's something about the positioning or height. Either way, we're probably going to buy a Rifton. His PT was going to see if she could track down a different sized one from another client so King could test the exact one we'd buy, but I'm ready to buy it either way.

We're also having some trouble with one of his AFO's. He gets random red spots on the front of his left foot/ankle area. We've gone in to see the Splinting team and they were confused as well. It's not a sore per say, it isn't raised or open or anything, just a red spot that takes days to go away. It's on his ballerina foot, so we suspect it has something to do with it. I wondered if it was heat related, so we'll see if it stops happening now that the weather is shifting.

Lastly, you may not have noticed, but his Bumbobile got an upgrade. We added a foot plate and a thing on the back so I can slide a stick in to push him with. It's genius.

This little guy is getting set up. :)

The Green Monster

2011-09-13T15:36:00.001-04:00

I have been doing a lot of thinking over the last month, a lot of reflection on certain behaviours I find myself doing and wondering why I'm acting so oddly. Some things are pretty obvious, some I'm embarrassed to admit. It turns out, I have a big bubble that I live in over here. It's part denial, part survival. I remember talking to a social worker about this back when Kingsley was first born and she said it's not that I'm pulling a bag over my head, it's that I'm recognizing that I don't need to put energy into certain things because I'm saving up for bigger things. I will just say she's right. ;)

So... what am I talking about, right? Well, I'm avoiding things. I'm avoiding pregnant women, birth announcements, baby boys, and little boys in general. I'm also avoiding one year olds, pretty much across the board. One year olds who have just turned one and are toddling around without a care in the world. One year olds who are pushing two like Kingsley and have struggles like Kingsley and who are now all starting to get up on their feet. I'm avoiding other kids with SB, my blog world, and any general reminder that the life we have is not perfectly normal.

I don't know why I'm doing it. In 2 days it's the anniversary of our D-Day and I'm so far away from that day, it feels like another life in some ways. Kingsley is doing awesome. I have no worries about him regressing or needing another surgery anytime soon. He's happy, he's healthy, he's moving forward. Great things are happening for him! Tomorrow, we're going for his first wheelchair consult and I'm really, truly excited about it.

I think what it comes down to is that ugly green monster: envy. It jumps out and catches me off guard at the most unexpected times. The way babies stand up and bounce on your lap or the way they stuff food in their mouths like they're starved. The way they babble and talk and toss out words, so effortlessly. The way they race around getting into toys and destroying your house. The way so many of Kingsley's little SB buddies are now up - whether standing or walking on their own or with help - they're up.

I am happy for my friends who keep having boring pregnancies and all kinds of labours and have kids who drive them mad with their endless talking and running, and I am overjoyed for those little ones out there defying the odds and slowly, slowly making their first baby steps. But I also want it for myself, for Kingsley. And since it's just not in the cards, I just can't think about it that much.

So, I don't.

I just avoid situations where I have to think about it. I make up excuses and tell myself how I'm too busy to check in with anyone, too busy for playdates, too busy to catch up on blogs. Instead, I watch Kingsley make his little gains at his own little pace and I celebrate them as if he's meeting every milestone right on track. It's very one-sided of me, I know this. It feels rather selfish. I'll get over it soon enough, but for now, I'll just go back to my bubble where I don't have to think about what Kingsley isn't doing and just focus on what the kids are going to wear for their fall pictures or for Halloween, all the new gear Kingsley is going to be getting in the next few months, playgroups, swimming lessons, and all of the regular, boring life stuff that I love so much.

go away smelly green monster

Just Like Hallmark...

2011-09-02T14:34:00.000-04:00

Well, I'm honestly not dwelling on it, but yesterday was two years since I sat in my midwife's office and watched her circle the 1:5 SPINA BIFIDA over and over as she reassured me that it was going to be just fine. Two years since I sat sobbing in my car, scaring poor Jeff when he answered the phone and I could hardly speak the words. Two years since I sat there knowing, as only a mother can, that my little baby was a boy and that this really was going to be happening to us. It's a very real memory for me and I can feel the pain as real as that day, but I don't have the ache anymore like I did then. I know this story has a happy ending, you see.

Anyway, another SB mama passed this on to me a few days ago and I finally got around to watching it which is what made me actually think about yesterday's date and where I was two years ago. There really is a song for every occasion, isn't there? I wish all parents who have those anniversary dates have endings like this and like ours. Not all of them do though and that is something that has become more real to me this year.

Grab a tissue first.

http://www.youtube.com/watch?v=DJOSMB0QhFY&feature=share

September

2011-08-31T21:16:00.000-04:00

Tomorrow is September 1. We've had such a great summer and Kingsley is doing fabulous, but here is when the voice in the back of my head starts leaning forward and whispering how cruel September is to us.

Last year, we were realizing that Kingsley was not moving the way he was, the way he should have been. We fought to be heard and it was the beginning of a long, challenging winter.

Two years ago (tomorrow), the words spina bifida were first said to us. Although those days are a long distant, painful but faded memory, they are a reminder of how those two little words love to blindside you.

BUT!

I will not get ahead of myself. I will not let the past haunt the present. As of right now, September is going to be just fine.

Bring on the fall. We are getting ready.

Mischief Managed

2011-08-16T22:41:00.000-04:00

I mentioned that Kingsley is starting to explore his world now and sometimes getting into trouble. I think it's stinkin' cute. Of course, it's always cute until it's not, right? I'm sure it'll get old one day. For now, his mischievousness just makes me laugh out loud on a regular basis.

Cordelia was napping on the couch at the cottage. He rolled over and decided it was a good time for peek-a-boo with the blanket she was using.

When that didn't wake her up, he decided to go for gold: her blankie. Sneaky devil!

When I took the blankie from him (we all fear the wrath of Cordelia losing her blankie), he decided to go exploring around the room. This heart was fascinating.

Rachel is a bit obsessed with mermaids these days. She decided to make mermaid tails for herself out of paper. Apparently, Kingsley thought they were pretty cool, too. Fortunately, Rachel was not that upset. She happily made another. Dozen. ;)

Outside, he is in love with bubbles. He watches them for hours. Wheels over for closer looks. Hollers for more.

He sat and played at this flower pot for about 15 minutes. He pulled off flowers, pulled off leaves, pulled apart the leaves and flowers, started again. I eventually stopped him before the whole thing was shredded. That brought on the Stink Eye.

The beach provided lots of opportunities for exploring and trouble.

I can't get enough of this stage. I love the second year for this reason - the learning, the exploring, the growth that happens. I'm so excited that Kingsley is diving in.

Unexpected Toys

2011-08-15T22:19:00.000-04:00

This morning Kingsley and I had a consultation with the Seating and Mobility people at the centre. I didn't think much of it, figured we'd talk about the next steps, what King's needs were, discuss a wheelchair, nothing too exciting.

I didn't expect that he'd roll out of there!

(sorry for the lousy pictures, like I said, I was ill prepared! All I had was my phone)

We did talk about wheels. She was pretty excited to hear that Kingsley was The Boy who had the Bumbobile and I kicked myself for not thinking of bringing it. We decided that since it takes a few months to get things rolling with equipment, what with trialing things out, then ordering, then adjusting... No time like the present to get the wheels rolling! This chair ^^ was the smallest thing they had kickin around and they decided it would be okay if we took it home for a week, just to get a feel for what we liked and don't like and have some base knowledge when we start looking at what wheels we want to buy for him. It's not the right size or anything, but he can go in it and that's all that really matters right now.

So, spam me Mama's. Those of you with kids on wheels - what one do they/did they have? What did you like? Not like? She mentioned the Zippie Zone, MyOn Jr., TiLite, and Comet (which is what he's borrowing).

I have to say, I keep waiting for the sucker punch. The ohemgeemykidisinawheelchair moment. I don't feel it. It doesn't hurt to see him sitting there, not at all. I can't believe that it was less than a year ago that I realized Kingsley's legs weren't doing what they were 'supposed' to be doing. It feels like a lifetime ago that I felt that pain. I don't know if it's everything we have gone through with the syrinx and surgeries or if it's just the people that have surrounded me with support and stories, but wheels just aren't the end of the world anymore.

Maybe it will hit me later, but for now I am crossing my fingers that it rains tomorrow so that I can take the kids to the mall instead of pool. He's such a rockstar. :)

Stink Eye

2011-08-14T22:20:00.000-04:00

This past few weeks something has occurred to me: I have a one year old.

I know, earth shattering, right? It has been rather earth shattering though. It's like Kingsley went from a baby to a 'toddler' overnight. The lack of toddling part has made it hard to notice. Fortunately, he's enjoying his wheels again and that's started to cause him to get into trouble, just like any other one year old.

He's exploring.

Exploring leads to trouble and trouble leads to...

The Stink Eye.

He's mastered it.

He's still pretty cute though. It's actually hard not to laugh whenever he flashes it at me.

We've Been Away

2011-08-14T00:09:00.001-04:00

And it's been awesome. No phone, no internet, no cable. Who knew you could still escape like that? Well, okay, so technically I still had my phone and that had an (very slow and annoying) internet connection. Otherwise though, it was a lot of snuggling with that face and a little mermaid and a little ladybug.

I love holidays.

Average

2011-08-03T14:52:00.000-04:00

Music to my ears.

Kingsley had a speech assessment last week and came out AVERAGE. Then we looked over a whole bunch of measurements for development and he's coming out just fine. Obviously bottoms out in gross motor, does great in fine motor, personal-social is alright (brought down by things like 'comes to you for help doing something' and 'drink from a glass' or 'uses a spoon' which cause me zero stress), problem solving and communication are both good.

He'll be reassessed in 6 months when he's 2 years old, or sooner if he doesn't hit a language burst in the next few months. In the meantime, I have accepted that King learns in spurts and he likes to keep me on my toes. He's gone through some steep learning with the bumbobile, worked really hard to sit up on his own (which he mostly does now), has suddenly started eating 'real' food more, and is getting really interested in toys. So, he hasn't focused on speech or taking care of his personal needs, oh well. He will.

The way I figure it, he was held back by his cumulative month in the hospital and all those long weeks of recovery. Correct his age a bit, subtract all of the measures that are irrelevant to his situation and my boy is a rockstar. ;) Which I already knew.

Hey there, handsome.

Elmo

2011-07-27T22:10:00.000-04:00

I am a behaviourist by training and as any behaviourist will tell you - motivation is where it's at. I have realized that Kingsley does not have a lot of secondary reinforcers. He doesn't love any stuff. That's a problem. I can't tempt him to talk, to move, to eat, to do anything! The only thing that works for him are me and the girls, and when we're the ones putting demands on him, our value drops pretty quickly ;) I need to make him want to say words, to ask for things and to label them. I need to make him want to look at books and point to pictures. I need to make him want to move to get something he really wants. Because right now, it's amazing how he can make the one word MAMA mean so many things (go away, give me that, stop bugging me, pick me up, make her go away, I'm shy, where are you? are we done yet? I'm done, etc.) and as a result, need nothing else to say or do.

Enter: Elmo.

Before Rachel, I thought the red guy was a big gimmicky annoyance. Even after Rachel came around, I didn't really get the appeal. He's cute, sure. He laughs, yeah. Kind of scared Rachel. Regardless, I have acquired a bunch of Elmo stuff over the years and I decided it was time to break it out and attempt to turn Kingsley into an Elmo lover. It's working.

It started with this video, which is now the top cathing entertainment Elmo and Ricky Gervais: Celebrity Lullabye It actually makes me laugh out loud, even after watching it 50 times this week. Kingsley smiles as soon as Ricky appears with his guitar. He looks at me for my reaction every time it gets to the end and Elmo says "Mr Ricky's done enough!!" (I'm actually laughing as I write that).

Anyway, now I have him pointing to Elmo in books, actually looking at the TV when Elmo is on (yeah, I really am TRYING to get my 18 month old to watch TV :p), scootching across the floor to get to my iPhone to hold it while Elmo is on. Progress.

And really, this little red guy isn't all that annoying. I kinda love the way he dances. These are some more of our favourite videos:
Outdoors, Jason Mraz
Elmo's Song
1, 2, 3, 4, Feist
What I Am, Will.i.am
.

On a related note, I'm also trying to get him attached to a lovey. The girls are both so attached to their blankies, and as annoying as that can be, it's really helpful for them to have a comfort item. If any kid needs a comfort item, it would be Kinger! The reality of King's situation is that one day he'll be back in the hospital for a stretch and I'm working on getting somethings to keep him comfortable and settled when that happens. He sleeps with his Monking, but now I'm consciously taking it out of his crib and bringing it places with it so he can play with him more. It's so adorable to see him hug his monkey.

Then there was the blanket issue. You would not believe the number of gorgeous, sentimental, handmade blankets the three kids have received over the years. Have any of them decided that they love them? Not a one. I can only sigh. Rachel's blankie is a second hand crib blanket that I picked up at a garage sale for $5. Cordelia's is a generic, green fleece Winnie the Pooh blanket from Zellers, and Kingsley has decided he also wants the ratty old green Pooh blanket as his. Oh, boy. As a consolation (to end the tug o' wars that were happening), I pulled out from our stash a similar generic, mass-produced blue one with footballs on it, of all things and he began snuggling instantly.

Again, I sigh. At least he's happy.

Summer is

2011-07-23T23:37:00.000-04:00

BUSY!!!

We've been having a record breaking heat wave and non-stop action here. Since school ended, my sister and her daughters visited, then the girls had a week of mornings at camp while Kingsley and I started 108 home reno projects, and now we have finished the first of two weeks of swimming lessons for the girls, so days revolve around the pool. Playdates, out of town visitors, birthday parties, ice cream, what's not to love about summer?

I love being busy. I love being wrapped up in our own fun stuff. I love how little things can make your house just that much more your home (even though we're doing it so we can LEAVE our home!). I don't even mind the heat. Kids are fabulous, life is going well.

And for those few of you who don't already know (*ahem* Kristin) the last Harry Potter movie was incredible. Ah, gives me shivers.

I don't think Jeff will volunteer to go see it again with me. And if for some reason we ever end up having another boy, his name would possibly end up being Neville. ;)

Silly Mom

2011-07-17T22:22:00.001-04:00

Hi, it's me, Kingsley.

I heard my mom talking about me not doing stuff. She's so silly! I was just teasing. This weekend I decided to give her a break and show off a bit.

I got myself dressed (check!)

Mom said layering on all of her hats and scarves was not exactly what the checklist meant by 'getting dressed' but I disagree. After all, we do live in Canada!

I ate my whole lunch all by myself (I've never done this before - check!)

No veggies though, those things are gross! I tossed them off my tray.

She said I couldn't stack three blocks and she was so wrong...

I can stack four.

I can also point to my nose (half a check!) and point to a few things in a book (another half check!)

Someone has to tell her to relax! ;)

Development

2011-07-15T14:57:00.000-04:00

Kingsley is hitting another big number: today he is 18 months old. How fitting that my little Potter boy has a big milestone like that on the day the last movie is released! ;)

It sort of snuck up on me. I may have been blocking it out, if I'm being honest. I feel like we are hitting some kind of Point of No Return here, where babyhood is ending and the last few days of this SB thing being incognito are zooming by quickly.

Kinger is no longer a big baby. He's just shy of 23lbs, lost some of his chub, and on the low average side for height. When people look at him, it's easy to assume that he's closer to one year old than two. People look twice when I say his age. The not-walking stuff stops being a 'late bloomer' thing at this age. I'm hearing less about the stories of So-and-So's Baby Who Just Took So Long to Walk and getting more of the awkward smiles. It's a good thing he's so darn cute, or people just wouldn't know what to say!

Really though, the walking thing isn't bothering me much. I'm (mostly) over it. I'm getting better at judging when to toss the SB diagnosis into the conversation and when to just accept the awkward smiles.

What is starting to nag me, way back in the back of my mind is the rest of his development.

Today, at his check up with his paediatrician, she pulled out the Nippissing Checklist. I get them in the mail every few months and I don't sweat it when I check NO, NO, NO, NO... down the list for all of the gross motor and a lot of the fine motor or eating things. But today was different. NO, he can't stack blocks. NO, he doesn't know at least 3 body parts. NO, he doesn't follow basic instructions to get things or give me things without a visual prompt....

Up until now, I have been able to brush off any developmental gains he's not making. Cumulatively, he has spent nearly a whole month of his first 13 months of life in the hospital. He has had 4 surgeries, 2 of them on his head/brain. And then the ever-complex way that one developmental skill is so intertwined with a dozen more: he didn't know how to eat finger food because he wasn't interested in picking up and mouthing toys thanks to the Chiari issues, for example.

So, part of me is saying he doesn't know how to stack blocks because the only time he'd ever have practice is when I put blocks in front of him, which I don't always think to do. He can't take his shirt off because he's using his hands to sit up. On and on, I can excuse it away. However, I don't know if I should be anymore. Is there a point where I have to stop excusing small delays before they become big skill deficits? Or will he eventually catch up in his own time?

I don't have answers. It isn't causing me too much stress, truly, just starting to nag at me a bit. I talked to his PT about it yesterday and she's going to put in a referral to another team at the centre... I forget their title, but they specialize in assessments of development sort of stuff and will be able to tell me to either relax or start pushing for more. He's also having an assessment with a SLP in 10 days, so we can see what's happening there as well.

Hey! It's wait and see time! My favourite! I'm really good at this stuff. ;)

At least I have Harry to keep me occupied in the meantime. I might be a little bit busting-out-of my-skin excited about that.

Auntie Kristi

2011-07-08T21:56:00.000-04:00

My sister and her daughters have been visiting for the last week.

It's been a whole year since we saw her and my younger niece, Karis. A year is too long! We've made up for it with Canada Day celebrations, trips to the beach and Storybook Gardens, and tons of time just hanging out. She is a far better photographer than I am and has a swank camera, so I let her do all the capturing for the week. And then we couldn't figure out how to get all the pictures from her hard drive to mine. We are brilliant. Anyway, things have been good. We have been busy. Summer is off to a great start.

The girls are going to be at camp together in the mornings next week and while they're there, Kingsley and I are going to do some renovations around here. We're looking forward to it. ;)

The Other Kids

2011-06-26T23:58:00.001-04:00

I have just one final Awareness topic for SB Awareness month.

When Kingsley was diagnosed, after the panic and shock subsided a little bit, one of the first things that ran through my mind (and I'm sure most moms who have been in my shoes) was: How is this going to change things for Rachel and Cordelia?? For me, it was a given that I was going to have Kingsley, but I know that many/most others take a moment to consider this and factor it into their decision. I've even heard of some OB's using it to push their agenda with comments about how any siblings' lives are going to be sub-par with a brother/sister with a disability. It seems to be a valid concern.

When I was pregnant with Cordelia, I felt overwhelming guilt about having a second child and potentially ruining our happy little love triangle by bringing in this other kid. Less time for Rachel. Less attention for Rachel. And obviously I would always harbour secret favouritism for my first child, right, because there's no way I could love the second the way I loved the first. The whole thing was a bad idea, clearly. Then Cordelia was born. If you have more than one child, you know how this story ends. I think pregnancy hormones really do make you stupid ;)

My heart could explode at the thought of this moment.

I was certain that there would be no downside to having a third. Boy, girl, no matter.

I hadn't factored in the big bad SB, though.

I want to say that it has only been a positive thing for the girls, but honestly that would be a lie. Looking back, I feel badly about those last four months of my pregnancy and the changes that Cordelia went through while I was so absorbed in my own thoughts. She was younger than Kingsley is now when we found out, still such a baby. The pregnancy part was so unkind.

But it ends.

And your heart explodes just a little bit more.

The girls still don't care about the SB stuff. They still don't fully understand it, but they've never been sad about it or felt badly for Kingsley. His equipment doesn't scare them, they think his therapists are great, they don't complain about me spending time with him. Up until Cordelia's recent string of doctor's appointments (GP, dentist, eye doctor), they were not remotely interested in the constant appointments he attended either, but now Cordelia insists that she should go too, in case there are stickers or flashy toothbrushes. ;)

The first hospital stay when he was born was hard on Rachel. A couple of weeks after he came home, I found her in tears. She didn't want me to take Kingsley to the hospital the next day for his appointment because she didn't want us to leave her again. It took her a while to trust that visits to the hospital did not mean staying there.

The second hospital stay in November was hard on Cordelia. For Rachel, the combination of school and Cor's afternoon nap meant that her days were fairly routine. For Cordelia, she was shuffled every morning between homes and grandparents, she saw me leave every morning, she just had chaos. On the 6th day, she begged me to stay home and just snuggle with her, just begged. I hate to say it, but we've got enough experience with this now that by the third hospital stay we had it all figured out and both girls nearly outshined their rockstar brother with their adaptability.

That is honestly the extent of the negative impact this diagnosis has had on my other kids, full stop. At three and five years old, they are unphased by so much and I'm immensely proud of them for that. At playgroups and playdates with other kids with various diagnoses, they don't blink - wheels, walkers, tubes, scars, they see past it. They're so proud of their brother and have no problem talking about him to other people, the same way they'd talk about each other, just so matter-of-fact about it all. It's not a new normal, it's a normal normal.

So, when they tell you that this SB diagnosis is going to have a big impact on your other children.

You can tell them...

You sure hope so.

Because the alternative is

Never getting to see how.

Awareness

2011-06-24T10:09:00.002-04:00

Awareness is a funny thing, isn't it? June is Spina Bifida Awareness month and I've been thinking lately about what that means. What is it that the general public needs to be aware of? The various international spina bifida associations have inspired some recent discussion on this topic as they seem to want to focus on two things: prevention and support. First, prevention. Second, support.

I understand this, truly. Prevention comes first on the timeline, right? Sure. As such, the vast majority of ad campaigns for SB awareness involve folic acid. Folic acid has been proven to effectively reduce the likelihood of having a baby with SB. My mom told me once that when she was working in the SB world back in the 80's (she was a PT for the SB clinic Kingsley now attends), that every year there were about 12 kids with SB born, 16 on a really busy year. In 2009, there were 4. Kingsley was the only one as far as I know in 2010. This year there are another handful that I've heard rumors or know of (one born on Monday so send out some prayers for that little sweetheart and her family!). Between my mom's time in the SB world and mine two things happened: folic acid and prenatal diagnosis. I would like to say that it's all folic acid that is the reason for this drop in stats, but we all know that's not true. I have yet to meet a parent of a child with SB that didn't get the extremely pushy Termination Talk at diagnosis.

I know that I am overly sensitive because I have a child with SB, but the prevention campaigns sting.

Take, for example, this one for my very own SB&HAO this month. "Every healthy baby is a victory" is the slogan. At first, you can think that it might possibly mean that the SB&HAO are going to be there to make sure that your baby with SB is going to be healthy and vital and have a fantastic life, right? Go team! However, then the poster continues with the message: "One in 1300 babies is born with spina bifida and hydrocephalus. WE CAN CHANGE THAT... DONATE TODAY." I will optimistically assume that what they are intending to say is that every baby not born with SB is a victory for research and education about the causes and thus the ability to prevent it. The overt message is that folic acid can prevent SB (which it doesn't always), but the subtle message is that when that fails, take one for the team, Mama! Next time, you can have a victory!

And if "Every healthy baby is a victory," what does that make Kingsley? Apparently he's not a victory. He's not even healthy! It's no wonder OB's are heavy on terminating.

Awareness shouldn't be just about preventing. It should be about making the world aware of what SB is really like. What the diagnosis will really mean for your child. And most importantly, that our children, friends, parents, family members, coworkers, and neighbours with SB are healthy, wonderful people who are thriving and LIVING.

If you are reading this it's likely because you either have or have someone in your life with SB, or because you know me ;) I just need you to spread the word. Let people know about Kingsley or any of the other beautiful children out there with SB. Let them know that he is amazing and that we adore him and we would not want a life without him. He is my baby boy and he is a victory.

All that being said, I don't think anything gets my back up more than someone NOT taking folic acid for a planned pregnancy. If there is any remote chance that you (or your wife, girlfriend, etc) may get pregnant in the next few months, take folic acid. If your prenatal vitamins are making you sick, take a separate folic acid pill on it's own. You cannot get enough folic acid from your diet, no matter how healthy you are. It just doesn't happen unless your diet revolves around folic acid intake and it doesn't, does it?

In the 70's, it was acceptable to drink when you were pregnant, to smoke, and folic acid was not on anyone's radar. Healthy babies were still born, yes. In 2011, people who smoke and drink when pregnant are seen as gambling with their baby's health. Why isn't the same said about not taking folic acid? Just take it. It's not a guarantee, but believe me, the last thing you want to live with would be to be in my shoes and not know if you could've prevented it.

Edit: Misty also has some comments on folic acid that are worth a read http://www.mistyboyd.com/?p=141

Living, Part 2

2011-06-21T23:08:00.005-04:00

June is Spina Bifida Awareness month in Canada.

In the US it is in October. Last October I participated in a blog link up where a whole bunch of people living with SB blogged about what life was like. I wrote about what life was like with Kingsley who was 8.5 months back then: Living There wasn't a lot that made Kingsley different from any other baby his age, other than a few moments of my day where he required a bit of attention. Eight months later, things are quite similar.

However, they haven't always been that way. Between October and now, that proverbial stereo had it's volume cranked to 10 for a good solid 4.5 months. Not only did we have to face the music, but it was the kind of music that gives you a headache and that is nearly impossible to dance to. It was stressful, it was consuming, and it was really painful to see my baby boy have to go through the things that he went through. I guess that is what living with SB is really like though - the stream of months or years of just life, mixed with episodes of panic and anxiety and dread that slowly fade back to life. Right now we are just living and life is really good.

Kingsley is almost 17 months old and has five diagnoses on paper now: myelomeningocele spina bifida, chiari malformation II, hydrocephalus, neurogenic bowel and bladder, and something else which means his legs don't move much, but I forget how it's worded. Last year, the shunt, medicine, cathing and therapy were the only small things in our life that reminded us about the SB. The shunt doesn't scare me anymore, I barely think about it. We are fortunate that Kingsley (*knockonwood*) has not had any trouble with Billy at all. ;) He does his job and doesn't cause us stress and that's just the way I like it. The medicine is equally mundane. I give him his meds on schedule (at diaper changes so I don't forget), they work, everybody is happy. Likewise, cathing is just still part of our routine four times a day that I barely think about. I still avoid doing it outside the house and usually I'm able to work it out so that it's done at home without causing us too much trouble. Jeff can do it, obviously, and Jeff's mom is able to do it now, which means that if she's babysitting I don't have to time my outings around it. My mom has also offered to learn whenever we need her to, but we just haven't had a need yet. I guess I don't get out that much ;)

Therapy wasn't too cumbersome for the first year and it's still not, however everything to do with therapy is bigger and more involved. He has AFO's that he wears on his lower legs and feet every day. I don't know why, but people tend to think they are sandals. Maybe because of the velcro strap? For whatever reason, they don't get a lot of attention. They protect his feet from bumps and squishes, as well as keep them in the correct position for standing. They don't bother me at all and they don't bother him at all.

King has a bunch of 'equipment' now. He has a seat (basically a seat back with a strap around his waist) to help him out when he's playing on his own on the floor since his sitting is not 100% yet. He also uses a Bumbo seat on the floor, but it's a bit trickier to get to the toys when he's raised off the floor and has that between his legs. I only use these at home when I'm not with him. He gets to play independently and I get to make dinner. Win-win ;)

He has his awesome Bumbobile that is teaching him the basics of wheeling. Our house is not yet conducive to wheeling, so his practice space is limited to the front hall and the kitchen. He uses it when we're playing outside and at his playgroups where he gets to be low to the ground where his friends and toys are.

Lastly, he has a stander. He cannot bear weight on his legs, so this holds him in a standing position to get the physical benefits of standing. He doesn't have any set guidelines for how long and how often he's supposed to be in it. I aim for every day for as long as he wants to be in it. He loves it and as long as you keep the toys coming, he's fine for an hour.

In the next six months or so, we plan to get him a mobile stander (think: stander + wheelchair) and a wee little wheelchair and that may or may not round out his equipment for the next few years. Things to consider still, but that's another post. ;)

I'm not sure that Kingsley's (lack of) eating qualifies as an SB issue or not. In a roundabout way, it does, but since there are plenty of kids without SB who don't love finger foods, it's not totally. He is still working on expanding his diet. It's getting better, but it's slow. He will eat most finger things like dried cereal and puff/chip/cheesie types of things and bread or bagels. Otherwise, oat cereal and fruit, yogurt, and those yucky jars of pureed casseroles. Blech.

He's laughing at his sister's running around the house.

Eight months ago, Kingsley's SB was still invisible. Now, it is less so. People notice that he doesn't walk. They notice that he doesn't stand or crawl or sit on his own. I am constantly being asked and then asked again and again how old he is, as if they had heard wrong or remembered incorrectly the first few times. Then there's an awkward silence while they debate whether or not to ask and I debate whether or not it's worth explaining. I have heard about everyone's son/daughter/niece/nephew/grandchild/neighbour who ever was a late walker in the meantime. ;)

People said that SB would become our new normal and I've been thinking about that a lot lately. It doesn't feel like a new normal, it just feels like normal normal. Some kids have wildly curly hair, some babies have colic, some kids are really small or really big. I don't have to adjust to carrying Kingsley around the house because I've never known any different. He gets carried (and snuggled), he gets cathed, he gets meds, he has therapy. It's just the way he is.

Also, Kingsley is almost 17 months old now. He's about 22lbs, which is on the small side. He still has his big blue eyes and his hair is still blonde. He likes cars, rocking on his bike, playing in the sandbox and water table, loud banging, funny stories, tickling, looking out windows, reading books, and he thinks his sisters are hilarious. He prefers me over everyone else. He is pretty quiet when we're out in public, but when he's comfortable he has a whole bunch of words like Mama, Dada, and Nana, approximations for Rachel, more, milk, book, ball, nigh-nigh, burp, bath, bubbles, up-up (to stand up in his stander), down-down (to come out of his stander), Grandma, Grandpa, and bye-bye, and signs for all done, no, and bye-bye. He also likes to sing. He's started to colour on the art easel, stack blocks, roll or throw balls, and put things in and out of toys. He rolls both ways and wiggles to get himself around. He sleeps through the night. :)

Right now, we're not really living with SB, it's mostly living with us. We pass in the hall, nod and say hello, and then carry on with our day.

The other blogs that were involved in the first link are these:

http://elementaryspirits.com/2010/09/it-took-me-12-years-to-tell-this-story/
http://ourlittlegibblet.blogspot.com/2010/09/2-years.html
http://riddingfamily.blogspot.com/2010/09/gift-of-spina-bifida.html
http://lipomyelomeningocele.wordpress.com/2010/10/02/reflecting/
http://www.mistyboyd.com/?p=24
http://www.caringbridge.org/visit/lillychavez/mystory
http://www.caringbridge.org/visit/lylacespedes
http://www.mistyboyd.com/?p=32
http://www.caringbridge.org/visit/bryceanthony
http://www.livingthesunnylife.com/2010/09/bruised-heart/
http://oursbjourney.blogspot.com/2010/10/how-2-words-can-change-your-life.html

Toronto, Take Two

2011-06-12T23:58:00.001-04:00

Last summer I had the dreadful idea that taking three kids to Toronto for a few days would be a wonderfully fun adventure for us. Turns out, I was very much wrong! So, last month when the idea of taking the kids to Toronto for a weekend came up, I was a little hesitant. Fortunately, there were some pretty enticing people to visit and so I began to plan.

It took a long, long, longlonglonglonglong time to find a suitable hotel. Note to readers: Toronto hotels frown upon having more than one child.

By some brilliant stroke of google magic, I did manage to find a suite hotel in the perfect location. It was fully accessible, pretty, and clean. Yay!

And it only took us 3.5 hours to get there! (that's a sarcastic nod to Toronto traffic which makes me want to curl up in a ball and cry - we only live 2 hours away)

I spent a lovely afternoon (sans kids and Jeff!) at the King Edward Hotel having high tea in honour of one of my dearest old friends, Gloria, who is travelling the world and getting married in 8 months. It was so awesome to get to see her (she's currently living in England)! She came back to the hotel to meet Kingsley and visit with the girls.

By some stroke of hotel magic, the kids actually went to sleep easily!

But of course, did not stay sleeping!

We got up bright and early Sunday morning to head off to the ZOO!!! I've never been to the zoo, so I was pretty excited. The place is HUGE! Definitely a place we'll have to go back to and see more of.

The girls were really excited.

Kingsley was a bit bashful. Probably because he knew he was going to meet...

They don't look it, but they really were excited to meet. ;)

Nickolas! Nick is two months older than King and has SB as well. His mother and I met online and have been chatting about the boys for over a year now. We finally got to meet! Nickolas has a sister almost exactly Cordelia's age, which was perfect.

We only ended up seeing the African animals, I think it was, but that pretty much covered all the big cool ones like elephants, lions, tigers, rhinos, and hippos.

Rachel said she didn't think the elephants were that big. I have no idea how big they were in her mind before seeing a real one, but trust me, they are HUGE in real life!

Kingsley wasn't that impressed with animals. He's such a people watcher. A shy people watcher!

Amanda and I got to chat and have the totally surreal experience of meeting someone for the first time, after you already know them. In all my planning, I failed hugely in the wardrobe department. Why didn't I think of wearing our shirts?? It's our month and everything! Next time.

I had a Harry Potter moment whenever we saw snakes. First, they give me the willies. The glass cannot be thick enough. Even this picture has my skin crawling. Second, Rachel kept leaning on the glass or tapping it and I had visions of Dudley Dursley falling through and kept yanking her away. Brazil, here I come....

More bashfulness

Eventually, we had to leave. Cordelia was a sleepy mess and Kingsley had conked out in the stroller. It was a faster drive home, thankfully, and other than a sad boy at our pitstop I would say the day was a success. Amanda and I are already planning the second meeting, this time with Zachary (and his family of course!).

This face is the reason Kingsley will probably always get whatever he wants. It's the saddest face ever and makes me melt! Sweet little guy.

More Wheeling

2011-06-08T22:55:00.001-04:00

Yesterday I took the kids to the mall to give Kingsley some open space to practice in his bumbobile. He's getting really good, but is quite limited in his ability to actually go anywhere in our house. The mall is under construction so the upper level is basically empty. We saw maybe 10 people up there, which was sort of interesting. No one really seemed to know what they were looking at when they saw King sitting there on his wee wheels. One woman did see him wheeling and gave him a big cheer of encouragement at his soon-to-come independence, which was sweet. It was a bit of a gong show otherwise as Cordelia was in her three-year-old glory, but Kingsley did show off a bit which is all you really want to see, so I'll stop typing. ;)

Sunglasses

2011-06-03T22:48:00.002-04:00

Haha, Momma! I got your sunglasses.

How do these things work...?

Ah-ha! You can't see me!

Just kidding, Momma, I'm right here.

I'm pretty cute. Go on, you know it.

I wanna wear them on my head like you do.

Oh, oops, um...

Ah, got them!

Ha HA! Sunglasses are mine again!

Hehehehe. I'm wearin' your sunglasses again.

Let's cruise, Momma.

We were in the parking lot waiting for Rachel to come out from school. He is obsessed with sunglasses lately. Loves them. Truly, a rockstar in the making.

Some People Go on Shunt Watch...

2011-06-02T20:55:00.001-04:00

I go on leg watch. And today we had a big scare.

To recap a bit - in the first few months after Kingsley was born, he was able to bend his legs at the knee, move his ankles slightly and twitch his toes, which meant that for all intents and purposes, he was going to walk. Enter the syrinx, a horrible winter, two huge surgeries, and finally 4 months of recovery, calm and progress. There are currently no plans for Kingsley to walk; he can move his legs from his hip, a bit of hamstring and random twitching down to his toes.

That's where we sit now. After watching him lose functioning twice and not even notice it one of those times, I am hyper aware of every kick and twitch his legs do. Every few weeks, I videotape him moving and watch them all to see if there are any changes. Every other day or so, I will tell him to move his legs and watch to make sure he is still doing it.

Last night, he did not move his legs. At all. I begged, I pleaded, I tickled, I ordered. Nothing. This morning, it was the same. I was absolutely heartbroken. My mind started working overtime, trying to count the weeks and see if we could get surgery over with before my sister and nieces come to visit, wondering if it would the start of a neverending series of cord releases or (no! no! no! no!) another decompression, and whether it would even work.

I made one final attempt to get him to move and...

You hear that desperation followed by the huge relief?

What's that thing over there? Oh, yeah, that's a huge weight that just fell off my shoulders. I can't tell you what a relief it was to see that. I don't know where he was hiding it. Maybe this kid is already in the tempermental toddler phase? Maybe I should be worried about that sporadic showing. Time will tell, but for now, I'm breathing easy. Too bad shunt watch can't be resolved this quickly!

You know, you can go days and weeks and months without giving it a second thought and then you get a day like today and suddenly you begin to appreciate every moment, every hour, every day that this lousy thing leaves you alone.

Off the Charts

2011-05-31T22:50:00.001-04:00

One of the silver linings to SB that I've mentioned before is that we get to savour babyhood and take note of every single new thing that Kingsley learns how to do. The most mundane skill or ability is suddenly life altering. You won't find them on most milestone charts, but I like to recognize them.

The biggest one for us lately is sitting in a grocery cart. I know. A grocery cart. Woopedee do! It really is awesome though! For the first few months I could lug around the bucket seat and just pop that in the top of the cart. That of course limited the grocery stores I could go to because I am rarely just with one kid and the cart had to be able to accomodate a kid and a bucket seat. Eventually, that got awkward. My Natural Mother Mei Tai changed my life and suddenly allowed me to grocery shop with all three kids. Awesome? Well, I suppose. ;) Definitely necessary.

However, then he started to get really heavy. That's just fine, I could wear him in it all day long... up until I have to lean forward to get stuff out of the cart and lean forward to bag groceries and then lean forward to put it back in the cart and then in the car. Ouch.

I think Cordelia was just as excited by this new skill as I was.

She smothers him the entire time we shop.

This month, Kingsley has finally been stable enough sitting up to ride in the cart. YEEEEEEEEEEEEEAAAAAAAAAAA!!!!! He is highly entertained by this.

Another very exciting discovery this month is Kingsley's ability to sit in the sandbox! I dig out some space, prop him in the corner and stay close by, but seeing the three kids play in there together is nothing short of awesome. Melt my heart.

The last thing: cookies. Kingsley reached out and took a cookie and then ate part of it. He's showing more and more interest in eating and it never ceases to thrill me. He's slowly slipping down on the growth charts, which I know isn't such a huge deal, but it does worry me everso slightly. I would feel better about that if I could confidently say that he was eating what he should be. Spontaneous interest in food and actually eating it was a gold star moment.

Now, three totally unrelated things with no segue...

There is a family who received the Big Bad Diagnosis a few months back. They were quick to jump in line for the prenatal surgery and it was done successfully on April 26. Kelly (mom) is 26 weeks pregnant right now and the amniotic fluid is dropping. They think she either has a leak or a tear or something. Either way, she is on strict bed rest and everyone is holding their breath, hoping that little Andrew is able to stay in until 28 weeks or longer. Prematurity is a big risk with the prenatal surgery. If you have a second, say a prayer for this family or keep them in your thoughts. You can follow up with them here: http://andrewmichaeljourney.blogspot.com/

Last February, I blogged about a little boy who was an orphan in Ukraine at risk of being institutionalized if he didn't find a family with the money to adopt him. This past week, he met his soon-to-be Mom and Dad. It gives me chills. http://www.thekulpchronicles.blogspot.com/

My baby girl turned three last week. She is awesome. I made cupcakes.

Best Case Scenario

2011-05-26T20:54:00.001-04:00

I have an ugly confession.

On the SB forums, like any other support forum, when someone new joins and announces that their baby was just diagnosed and asks what to expect, what do our kids do, what are they capable of, are they defying the odds? I freeze. I read the other responses. Then I type. Delete. Type. Delete. And finally describe Kingsley as a newborn.

I remember perfectly how scary that diagnosis is. I remember reading about other kids. I remember zeroing in on any kid who had a defect around where Kingsley's was. Jeff and I would read them over, pick them apart, compare and contrast: Well, that kid is where Kingsley's is and he can walk. That one has AFO's, that one doesn't. That kid has had FOUR shunt revisions!! Holy, that one has had a whole bunch of surgeries. That kid you can't even tell she has SB, what's her level? All we wanted was reassurance that what everyone was telling us was true: the doctors who diagnose give you the WORST CASE SCENARIO. Your child will be a rockstar.

There are so many examples of children with SB defying the odds, karate chopping SB in the teeth, doing all of the things 'they' said they'd never do or wouldn't be able to do, accomplishing things they'd never achieve, meeting milestones right on track, despite the dreaded predictions otherwise. Take that, spina bifida!

Kingsley doesn't exactly do that. Kingsley is one of the kids that would've made me dissolve in tears for days if I had read about him when I was pregnant. That one is S1 but functions at L1!! He's getting a wheelchair and has had FOUR surgeries already!! *sob* He can't even eat normal food yet! The end of the world! The worst case scenario come true! And that's why I hesitate when new moms ask for reassurance. They want to hear about the other kids, not my boy. I know this and I don't blame them in the slightest.

The thing is, it's hard to describe in words how incredible Kingsley is. It's hard to understand how he completes our family, how he lights up a room with his smile, how he smells like heaven when he wakes up in the morning, and how he can charm the pants off anyone he meets (What's that Kingsley? You want a new house? Sure! I'll build you one! ;)). His laugh is electric. The faces he makes can entertain me for hours. He's brilliant, pure and simple, you can see his mind working and figuring things out whenever he plays. He's such a happy, good natured, adorable kid. And the wheels he rides are pretty cool.

The level of functioning, the number of surgeries... they really don't matter. People say it over and over and over, because it's true. When it's your child that you are holding, it doesn't matter. With Kingsley, it's the way his lips move when he says Mumma, the way his arms wrap so tightly around my neck, the sparkle in his eye when he sees me walk in the room, the way he's entertained by his sisters, the way he says Dadda? Dadda? when he hears the garage door, the way he pounds on his toy piano, the way he dances when he hears a good song, the way his lips pucker when he's trying really hard to do something, the softness of his skin, the way he throws his head back when he laughs... those are the things that matter. Those are the things that make me feel every day like we got the Best Case Scenario. So, take that Spina Bifida.

Fresh eyes for you, Kristin.

(not my) iPhone

2011-05-17T21:18:00.002-04:00

Jeff got me an iPhone for Christmas and within the hour of me taking it out of the box Rachel was playing on it. Cordelia was right behind her and as you may have noticed, Kingsley is also a fan. The phone has saved us from many a loooong boring appointment wait, diaper change, and other tough moments that have required distraction. I don't know how a 16 month old baby can figure out technology so easily, but he does. His latest favourite thing to do is use the camera like a mirror. It ends up with lots of pictures of him that make me laugh. He's so darn cute.

Also, in case anyone else has a similarly tech-loving child, his latest favourite app is Fart Piano. For real. His two little fingers get going and he creates a symphony of... farts. Thanks Rebecca ;)

Come Out, Come Out, Wherever You Are...

2011-05-12T22:03:00.000-04:00

When I was in highschool my friend and I saw a car with duct tape holding the door on. We thought it was hilarious. After that, we started looking for the junkiest cars we could possibly spot. It was amazing that once we started looking for them, they seemed to appear at every turn. Bumpers held on with string, windows made of plastic wrap, masking tape over holes in the body... they were everywhere.

When I got pregnant with Rachel, the same thing happened. Suddenly, everywhere I looked there were women with big baby bellies. Babies in strollers, in carriers, in arms, just all over the place. One day, I didn't know a single pregnant woman or newborn. The next day, I was surrounded by them and couldn't turn around without bumping into one.

I'm starting to see people with SB. Or I think I am anyway. They're popping out of the woodwork and it's like a giant tease from the universe. The other day I was out in the front yard with the girls and my mom. Halfway down the street I saw a girl who was about 5 or 6 years old, walking behind a wheelchair that she was pushing. She walked like a little girl with SB would (and I cannot remember the technical explanation - one of the nerves near the bottom of the spine goes to somewhere in the glutes-ish area and thus makes it hard to tuck the bum in if you don't have that firing... or something like that). ON MY OWN STREET! Could this be right? I pointed her out to my mom who nodded in agreement. No cars on the street, so was she visiting? Did she live there? How come no one had ever mentioned that there was someone ON MY STREET living with SB? She disappeared when I had my back turned and I haven't seen her again since.

The next day I saw a 20-something year old guy in a restaurant that made me look twice. He was walking, but there was something awkward about his walk that made me stare. Until I realized that was really rude.

I've seen kids with AFO's in wheelchairs that I want to stop in the middle of a park and ask what their story was. At the grocery store, I passed a little boy about 4 years old in a wheelchair and I was tempted to ask his mom why he used one and how old he was when he got it.

We need a pin or something. I need to be able to identify other members of this exclusive club so that I don't look like the rude staring lady who really just desperately wants to find my team members.

The thing is, I know someone somewhere knows who we all are. I know that confidentiality prevents them from passing the list over to me. I know that if they wanted to be open to new families joining the club, they'd allow their information to be passed out. So, do I assume that they don't want to meet me? Or that there's been a glitch somewhere and there are other people sneaking quick peeks at Kingsley's AFO's and wondering how to pose the question?

Remember that scene in the Neverending Story, right at the end when the girl in the book with the necklace on her forehead tells the boy reading the book to do something and he's so confused by how she knows that he's reading it? I know that there are other SB folk from around here reading this! Yeah, you! For all I know I'm passing you and your babies and bellies on the street and having no clue. It's time to come out and play. Come find us.

I make cupcakes. ;)

No, really. I do make really good cupcakes.

The People Who Made Me

2011-05-08T22:50:00.002-04:00

My Mom and Me ~ March 9, 1978

Rachel Renee ~ March 19, 2006

Cordelia Capri ~ May 20, 2008

Kingsley Kieran ~ January 15, 2010

These four people have made me the mother that I am today and for that, I am so grateful.

I simply love being a mother.

Happy Mother's Day!

Last Week

2011-05-08T22:18:00.001-04:00

All three times that I have been pregnant I used Ann Douglas's The Mother of all Pregnancy Organizers. I love this little book. Week by week, I documented how I was feeling, what I was craving, the lack of exercise I was doing, and how much action the baby was giving me. The other thing that there was space for each week was what else was going on in my life and in the world. One day when they ask to see their pregnancy book (because they ARE going to care about this, they ARE, even if I have to pin them down and read it to them ;)), they will be able to sample a little bit of history. Like how Hurricane Katrina hit when I was pregnant with Rachel and gas prices rose to $1.33/litre (astronomical at the time!), and how we bought our first house, then I got in a car accident when I was pregnant with Cordelia, and how Michael Jackson died when I was pregnant with Kingsley. Their own little time capsule.

Thinking about those books made me feel like I need to comment on three big things that happened in the world this past week, as well as three other big things that happened in our own little world.

The first big world thing, as most of you already know, are that Prince William married Kate Middleton on April 29. Kingsley was not up to see the wedding, nor was I. He did wake up at 6am (wedding time in England) and I ignored him (we are doing a bit of sleep training right now) and stayed in bed, however I did pick up my phone and google "Kate Middleton wedding dress" and came up with nothing new. Then I went back to sleep. Later on that day, I watched the wedding with the girls, but Kingsley was napping. So, there ya go, Kinger (because I know that one day he will be fascinated by his own blog!), you can tell everyone that you know where you were when Wills married Kate.

The next big world thing, as I'm sure all of you know, was that Osama bin Laden was killed. I have no commentary on this, other than to say that it was/is a pretty big deal to a whole lot of people and I feel like it warrants some mention. It was a very rare evening in the Bell house because we went to bed early and missed every single breaking news bulletin. Kingsley (in the midst of sleep training still) was up screaming at 2am and Jeff felt the need to pass the time by checking his CrackBerry. I was half asleep when he told me the news and I recall wondering if he was talking in his sleep or if that actually happened. It did.

Lastly, as some of you know, we had another Federal election in Canada on May 2. I will spare you my commentary on this one ;) Stephen Harper, the Conservative leader, won a majority government. Four more years. OK, I will say this: I am afraid of what it will do to health care and how it might effect Kingsley's future in that regard. I get quite anxious if I think about it, so I don't. We'll see.

And while all of these big things were going on in the world, we had our own big events. Of course, Kingsley wheeled, then rolled, then got mouthy. He also got a new pair of boots. They're actually AFO's - ankle-foot orthotics. They're pretty cute. Perfect timing as they protect his feet when he wheels into walls and doors. They keep his left foot in the right position (his foot/toes stay pointed, like a ballerina, otherwise) and provide support for him in the stander.

Even more exciting, we celebrated Easter! Sadly, the kids did not rock the coordinating outfits quite as well as they did last year, although with no planning at all, Jeff and I both ended up matching the kids. We're just good like that. ;)

Easter was lovely. What made it all the more lovely was that my niece and brother-in-law were in town for the week and we got to spend a lot of time with Kamille! My sister and her family live in BC so we don't often get to see them. This is the second time this year that Kevin has brought Kamille home to visit while he works. I am always thrilled to have her hang out, as are the girls. Kingsley was just considered baggage at this point, as he cannot yet be bossed around. Holy moly, three girls sure are interesting to listen to!

There. A week in the life. I guess that's more than a week, but you know what I mean.

Milestones - check! check!

2011-05-06T23:06:00.001-04:00

How lousy of me! A whole week without updating my blog, tsk tsk. Now, you're probably thinking a week isn't that big of a deal, but come on. We're talking about Kingsley here.

Today, a mere, um, 11 months (lol!) after Kingsley first learnt to roll from his tummy to his back, in the exact same spot, Kingsley...

ROLLED ONTO HIS TUMMY!! YAY!!

See that line down his torso? That's his shunt line.

As usual, you can see the progress coming daily. He's been working his abs and back like you wouldn't believe. We have borrowed a bath seat that I've been using as a play seat. It basically has a back rest and a strap around his waist. It allows him to bend, twist and then work his muscles to get back upright. It's been great for him! Add in the Bumbobile where he likes to bend backwards and then work to get back upright and this kid could audition for Abs of Steel. ;) And so now he rolls and wheels.

In other exciting news, yesterday I found Kingsley with a stone in his mouth. Shock! Horror! Elation! Only I would be excited about that. He's started putting things in his mouth in an attempt to eat them. Typical baby thing, right? Exactly!! I have been waiting for this day. He also tried to eat a piece of celery - two actually. He seemed totally convinced that he could do it too and gave it his best effort before I fished out the pieces he had chomped off.

These milestones are obviously months overdue. I'm okay with that. I am starting to see now that Kingsley is doing things in his own time, but that he IS doing things. I have to keep reminding myself of that sometimes. Focus on all of the incredible things he is doing, toss out the things his body is not designed to do. No, he can't walk or stand or pull himself up or even sit on his own. In time, he will figure out how to do what he's supposed to. In the meantime, I will continue to savour this slow, drawn out babyhood as he discovers his body and his world.

Rocking and Rolling!

2011-04-29T11:53:00.001-04:00

It only took one week for him to figure it out! 15.5 months old and he is GOING!

Accessible

2011-04-28T15:40:00.001-04:00

Look at what we got in the mail:

I'm kind of not sure about it. I applied for it, obviously, but now that I have it I don't really know what to do with it. It sat in my house for a bit. Then I took it out to the van and put it on the seat. Then on the visor. Then the dashboard. Then back to the seat. Now it's in my house again. I'm thinking that the time will come sooner than later when I will be very glad to have it, but for now I think I'm going to hide it in the glove box.

I applied for it because Kingsley is growing and getting to be a big boy. It's fine to carry him around if I have my mei tai or the stroller, but if he's in my arms it is challenging. It's not like carrying the average 1 year old who will hold themselves upright and use their legs to ride on your hip as you go about your business; Kingsley's lower half doesn't do much other than weigh him down. He's heavy and he doesn't help you out at all when you're holding him, so he often requires two hands on, especially when he might be looking around. Managing him and Cordelia at the same time is a treat, let me tell ya. And the inevitable equipment is coming. We've already put feelers out for a mobile stander and after that will be the big chair.

And so, I'm laughing at myself here because I seem to want all these things until I get them and then I panic, like maybe if I lived in denial a bit longer it will go away. ;) It's good that I keep forcing myself to do things like get this permit. I need to keep getting used to it. Normalize it.

SB does feel normal for us now. It seems like such a regular thing that a big blazing blue sign in my vehicle seems awkward and unnecessary. It's not THAT serious! It's not THAT debilitating that I would require a fancy parking spot! But I guess that is my own mental stereotypes about the sort of people that do qualify for accessible parking, isn't it? After all, it's an accessible parking permit, not a Tragic-Debilitating-Condition-That-Requires-Sympathy parking permit.

How Old is He?

2011-04-26T09:49:00.001-04:00

"How old is your boy?"

"Fifteen months."

"Fifteen months. Right..."

There's a pause. I wait, wondering if he's figured out how he's going to ask it.

"He's a cutie. Such big eyes!"

"Thanks." I smile, finish putting my boots on and pick up Kingsley who is sitting propped against a wall by the doorway.

This is not the first time this other Dad at preschool drop off has asked how old Kingsley is. He has a 14 month old who squirms to get out of his arms, toddles up and down the hallway, and runs crying from strange adults she bumps into. We see him twice a week and he's begun to notice that Kingsley doesn't walk.

The first time he noticed and asked how old he was, he sort of nodded in that empathetic way and I could tell he was thinking: late walker. The last few weeks, I've noticed him noticing more. Like how Kingsley doesn't try to walk, doesn't stand, doesn't sit independently even. How I carry him everywhere and rarely put him down. And how Kingsley is just fine with that. I can see the wheels turning and I know he can't figure it out.

He's a very nice man and his questions don't bother me at all, nor does the way he stares and puzzles over Kingsley's stationary state of being. He's not rude about it and I know he's trying to find the right way to ask without being impolite. I should just tell him, but I'm also still trying to find the right way to say it. Still.

I understand that Kingsley is not going to walk, not the way I imagined he would. Almost all of the time, I am okay with this. But that tiny little part of me that isn't okay, that is a teenie bit sad about wheels, that can't allow myself to think more than a year into the future - that part of me is having trouble blurting it out: My son has spina bifida. He isn't going to walk.

At 15 months old, Kingsley looks like any other toddler. He smiles and babbles and waves and plays shy. He accepts kisses from his sister and then pushes her away. He whines because he sees all the toys and wants to stay and play. He twists in my arms to have one last look as his sister runs off. If you look very, very closely you can see the faint line of a scar down the back of his head and neck, but hoods hid that all winter while it healed and only the woman who cuts his hair would notice it anymore. His legs don't work. That's hard to figure out, to pinpoint when you're just seeing him for short amounts of time.

My son has spina bifida. He isn't going to walk, but he is going to amaze you.

I will find the words soon.

Bumbobile Day 1

2011-04-21T22:54:00.001-04:00

I'm not sure how long it will take him to figure it out. I've seen 18 month olds handle wheels with ease, but I don't know when between 15 and 18 months the *click* happens and kids figure this out. It's not exactly on the developmental milestone checklist. Regardless, this is day one with his wheels.

Buckets of Excitement

2011-04-21T20:49:00.001-04:00

Today was a very VERY VERY exciting day!

We went in to have Kingsley's standing frame adjusted (they put some awesome new straps on it because he was leaning to his weak side) and his new wheels were also there waiting for him!

It was very exciting.

Did I mention we were excited? Because I was beside myself with excitement. Busting out of my boots excited.

His PT and I waited until the creator of his wheels arrived and then we put him in and held our breath.

No kidding! This was Kingsley's initial reaction. He was IN LOVE! Oh, my cheeks hurt from smiling so much. He was so awesome in it. The three of us just watched King and marveled at how awesome this little chair is and how it's going to change his life. He hasn't quite figured out how to move in any purposeful direction, but he knows that the wheels make him move and he likes to play with them.

He'll be starting up a mini-chair basketball team any day now.

I can't even tell you in words how much I love this thing and how incredibly grateful I am that we have such awesome people in our lives that were able to make this happen for him. It's so simple and yet extraordinary.

It's pretty straightforward in design. Two big wheels attached to a platform that the Bumbo sits on. The Bumbo can come off and be used in the usual way. Underneath there are three wheels which allow him to tip forward and back (his absolute favourite thing to do and guaranteed to send him into a fit of giggles). It spins in a perfect circle in one spot. As an afterthought (Kingsley sort of scared them by arching all the way back to see me behind him at one point), the fourth wheel was added in the back to prevent tipping. It would take some extreme force to tip that far back I think, but with Cordelia around nothing is impossible ;) Kinger can't throw himself backwards in a Bumbo the way I've heard some kids do, he doesn't have the leg strength for that. Once he's in it, he's stuck until someone rescues him. That's an awesome thing because it means there are no straps needed! Just drop him in, lift him out.

This is the base without the Bumbo from the top and the underside.

I know what you're thinking now - this is pointless without video! Patience, patience. I'm working on getting it together. It'll be worth the wait!! Actually, maybe not. It's not that exciting. He doesn't actually play basketball or anything, mostly just sits and giggles and moves the wheels back and forth while we tear up and grin like idiots behind the camera. :)

Planning

2011-04-19T23:38:00.001-04:00

I am a planner. An organizer. A Type A.

Some people find my endless checklists and compulsive need to plan every detail, every minute, and be prepared for every surprise slightly annoying *ahemJeff*

I can be impulsive and do things on a whim, I'm not that uptight. I just work best when I have a plan and know what is going to be happening.

Most of my life has gone according to plan in one way or another. The school, the career, the husband, the children, the house, the car (Jeff's, not mine. I did not want a van). All things I saw coming.

That's where the planning unravels though, isn't it? Children, obviously, do not fit into this lifestyle of planning and organizing very well. You can plan to leave your house at 8:45am and even when you get up at 6:30am and have everything all prepared to make the mass exodus happen on time, it inevitably will not happen. Ever. You can plan a fabulous family day and there will still be whining and tears. You can plan on having a nap, but we all know that's just a wild pipe dream.

Spina bifida most definitely does not fit into my well planned lifestyle. More specifically, shunts and syrinx's do not fit my lifestyle. I feel like life has been on hold for nine months and now it is April and I want to be making summer plans. I want to book a cottage for a week. I want to road trip with the kids to Toronto and Niagara Falls (don't you dare mention last year - this year will be much better!!!).

The trouble is, Billy the Shunt makes me hesitant to be anywhere I can't reach a neurosurgeon in under an hour. And the nameless syrinx... Well, Kingsley is doing fantastic right now. It's been over two months since his detethering and we're seeing nothing but improvements. Every day he is gaining gaining gaining. I can relax, right? I can count on this staying stable. I can plan.

EXCEPT!

June is the follow up month where Kingsley will get another MRI and see a whole bunch of specialists. In my head right now I have about 6 weeks blocked off from mid-June to the end of July where I have Kingsley scheduled for an MRI, panic, surgery, and recovery. Isn't that terrible? What's that saying? Plan for the worst, hope for the best? Yeah, that's my new planning strategy these days.

So, sometime in May or June we're going to plan a last-minute vacation to Toronto and/or Niagara Falls and I'm going to try to find a cottage for August. If we get the glorious news that the syrinx has shrunk or does not cause any trouble between now and then, well then July is going to be a free-for-all with day trips and laying around basking in the nothingness of our days.

In the meantime, we are planning our garden.

We are planning for spring to actually stick around and/or turn into summer.

That weird white stuff on my garden is SNOW!! For real snow. I took this picture yesterday. As I cried.

We are planning for Easter!

And we are planning for all the fabulous things we'll do next week when my niece Kamille comes to visit (although planning with them is like trying to pin jello to the wall - you know it's true K4!!!).

Oh, also planning for the ever so exciting unveiling of Kingsley's new wheels. I'm not holding out on you, it hasn't happened yet. I'm anticipating either tomorrow or Thursday. We'll see!

Oh, Sad Times

2011-04-15T14:50:00.001-04:00

I've gone through this before. Three times, actually. You'd think I'd be used to it, but I am not. It's unsettling, it's disruptive, it's sad: nap times are being dropped. TWO naps to be exact. Both Cordelia and Kingsley have decided that they would rather go without naps - Cordelia in the afternoon, Kingsley in the morning.

I've had a pretty sweet set up for the last 7.5 months, really. Rachel goes to school in the morning and Kingsley napped, so Cordelia and I got time together. Then, in the afternoon Cordelia and Kingsley napped while Rachel and I spent time together. With appointments, therapies, hospital stays, feedings, diaper changes, and all the lovely midnight wakings, Kingsley and I have never had a shortage of one on one time together.

That's all over now!

Kingsley and I have had activities Monday, Tuesday, and Wednesday mornings for the past few weeks and he's done quite well without his nap. Thursday, he went down without trouble, but when I tried to put him down in the afternoon he was having no part of it. That resulted in quite the cranky kid later on as you can probably imagine. So, today I tried keeping him up even though we didn't go anywhere. By lunch time he was tired, but he's in the midst of a nice long nap right now. *sigh* Babyhood is ending. I guess I should be happy that the double naps lasted this long!

Cordelia now, whew! That's interesting. I've been dreading this, to be honest! ;) She just up and decided on Tuesday that she was done with her nap and that was the end of it. I haven't fought it much since there's not much point to fighting with Cordelia if you can help it. If I recall, this is about the same age that Rachel stopped napping as well. An equally sad day.

So now there is no quiet time with Cordelia on the mornings that she's not at preschool because we've got Kingsley with us (Oh, who am I kidding? Cordelia was never quiet) and now there is no quiet time with Rachel in the afternoon. It's well timed I suppose because it will leave the mornings open for Kingsley, Cordelia and I to go for walks and get out of the house which we could rarely do with the double nap scenario. With spring weather here, I can finally get yardwork done in peace in the afternoons without having Rachel at my heels begging for attention - she has Cordelia!

And in my wildest dreams, less sleeping during the day will lead to more sleeping at night... right?? One day, one day.

Pimp My Ride

2011-04-14T14:12:00.001-04:00

There are a couple guys at the children's centre we go to that do all kinds of seating and mobility and general gear for kids. The create stuff and modify stuff. When someone first mentioned modifying equipment for Kingsley, I balked. It's silly. I didn't want 'things' that screamed SPECIAL NEEDS KID OVER HERE!! I've come a long way since then! A couple weeks ago while I was daydreaming about spring coming one of these days and wondering what I was going to do with Kingsley when we play outside, it occurred to me that I should see if they could modify our wagon.

Last week, I brought it in and VOILA! This is the end result:

Could that be any cooler?? They added a chest strap and the seat back to keep him from sliding sideways and added a strap through his legs to prevent him from sliding down. And the K! How awesome!! I love that it's not modified to the point that the girls wouldn't be able to sit there if it was the two of them in the wagon instead of Kingsley. I pretty much just love everything about it. I love that I won't have to use the stroller all summer and that he can ride with his big sisters now.

Kingsley was also thrilled with it. He kept stretching out his arms to pat the sides and give me huge grins like he was just so proud of being a big boy in the wagon. And he DOES look like such a big boy! It's funny how such small things can make him seem so grown up. I forget that he really is in the toddler phase now, despite not toddling anywhere.

The other hugely, enormously exciting thing that happened when I was chatting with the workshop guys is still to come. A month or so ago, I first saw a video of a little boy not much older than Kingsley in a Bumbo chair on wheels. A mini wheelchair that is so low to the ground he could just tip forward and pick stuff up to play like any other kid his age. I was sold!! However, despite my best efforts, I could not figure out how I was going to get my hands on one of these ASAP. I forwarded and/or showed the video to just about everyone I know, including Kingsley's PT's (who both loved it). This little chair came up when we were with the workshop guys as I moaned about how badly I wanted one for King and they just said, ever-so-casually: "Well, why don't we make him one?"

WHY DON'T YOU MAKE HIM ONE?? Are you kidding me? SQUEEEE!!! I could barely contain my dance of joy, I tell ya.

So, yesterday I brought in a Bumbo chair (thank you, Gail!!) and they got to work. It's different from the video, but just as effective. We'll be picking it up next week. I got to put Kingsley in the test version and I kid you not, he reached out his arms and pushed himself toward me. The doors are opening! The clouds are parting! The lights are all on! This kid is going to MOVE!!

And well timed as well, because he is showing signs of desperately wanting to go go go go go. He is using his hands to pull himself up on his side, wiggle around, lunge and reach. When he's in my arms, he's squirms around like any other kid his age and it's beginning to hurt my back (I'm not complaining, I love his curiosity).

So, next week just wait. I'm so excited for what this is going to do for him. In the meantime, we'll enjoy his new ride now that spring has FINALLY arrived. :)

Rockstar

2011-04-09T23:06:00.002-04:00

I bought this beat up old piano at a mom-to-mom sale when Rachel was a baby. She barely tapped it. Cordelia had no interest. Kingsley, however, takes on the piano like it's his job. He gets those two little fingers all straight and pointy and pounds his heart out. It's most funny when he's sitting upright (the bouncy seat sort of has him reclined) because I swear he channels Schroeder. He gets the serious face going (which you can see bits of in the second half of the video) where his lips sort of pucker and he starts puffing and staring intently at the keys, lest he miss the one he needs to perform his melody. Future for real rockstar in the making, folks. You can all say you knew him when.

Moving

2011-04-07T20:55:00.002-04:00

I made a PG video of his legs moving! It's sideways, but you can still see what he's doing and hear my annoying excited voice. At the end, you can see how he reaches down to touch his leg when it's moving (at the top).

I've watched this video about a hundred time. It's strange. I can't even describe what it's like to go from him moving his legs so much a year ago, to a lot less, to not at all. And then to get so much back after his decompression and then have that go. And then to have the detethering and now be back here. I had just accepted that this movement was not going to happen at all and now he's moving. I know it's not a lot (well. sort of.) and I know that it doesn't mean he'll walk one day, but it's still amazing. And scary.

Moving Forward

2011-04-07T11:20:00.001-04:00

My little rockstar has been doing everything and nothing lately. Have I mentioned how much I love boring, uneventful days? Because I really do. I love routine, I love monotony (haha, I'm in the right field, eh?). I like seeing things move forward, even if they are at a slow crawl. So much nicer than moving backwards.

King's been great. Still working on eating new things, getting really great at putting things in his mouth.

I was hesitant to say anything because of the up and down, back and forth, but I am certain now that he is moving his legs more than he was post-op (detethering). It's not quite the full leg up movement he was doing after his decompression, but it's the pull up from the hip. The only way I can describe it is if I say he goes into a on-your-back birthing position. How's that for a visual? ;) The coolest thing is that he KNOWS he's doing it. I tell him to move his legs and he pulls them up and laughs. He'll even reach his hand down to feel his thigh coming up. Over and over. Legs up, legs up, legs up. I'm holding the pee cup again. No complaints there. :) Actually, that's the reason I'm not posting any pictures or videos of this new movement - he excels at it mostly when I'm changing his diaper, so it's not blog-appropriate!

He's really working hard at sitting up on his own. He can do it, but not confidently. He's so interested in toys and stuff that he's beginning to lunge for stuff and that makes him quite unstable. He's aching to move, which is also a brand new thing. When he's on his back, he's mastered a shoulder-wiggle-arch that gets him going in a circle or a bit to the side. On his tummy, he's going nowhere. He hates it. His PT and OT agree it's probably because he's realized how much cooler life is from an upright position and being on his tummy doesn't have a lot of perks right now. We're working on rolling since he still hasn't mastered the back to front roll. It requires some motivation and probably pulling with his arms to get his lower body over. I can see the motivation beginning to form though. In time!

His stander has gone back to the centre for some modifications. He leans to the left in it (his weaker side) so we're going to put a sturdier chest strap on it. I'm also taking our wagon in to the fabulous guys there to see if they can do some modifications with the seat belt so that Kingsley can ride in it this summer. Another thing I'm going to talk to them about is making a custom castor cart. We have the two on loan right now, but neither is perfect. The newer one has wheels that are just too far back and the back of the cart comes up to his head and he hates it. The older one has a great seat, the wheels are in a great location, but they're very hard to manipulate for someone so small. He needs bigger muscles! ;) He WANTS to go though.

More stuff keeping us busy - we're back into the playgroup once a week that has the mix of kids with special needs. It's run by a PT and a SLP and has different professionals come in weekly to add their input. Swimming is also happening twice a week in the therapy pool, once with just King and I in a group 'lesson', the other time with Jeff and the girls for a family swim. He's doing much better in the pool than in the fall. This is my water baby!

...and that's what we've been up to! A whole lot of just life stuff. Really, really big little stuff that makes me happy and keeps Kingsley moving in the right direction.

The Food Issue

2011-04-01T23:06:00.002-04:00

When Rachel was a baby and I was on maternity leave I had a lot of time to read and watch things on TV. Somehow, I stumbled upon An Inconvenient Truth and Fast Food Nation about the same time that Rachel started solids. I've aways been a fairly healthy eater and been environmentally aware, but these two sort of pushed me over the edge for awhile. Our house became much greener, our diet much cleaner. There have been a few lapses (most notably my incredibly unhealthy obsession - yes obsession - with microwave macaroni and cheese while pregnant with Kingsley) and pregnancy/working is usually a disaster, but for the most part we've been moving into a healthier, better lifestyle.

Kingsley's bowel and bladder issues have further pushed me to a cleaner way of eating. We are not entirely sure what his bowel situation is, but diet is a big part of keeping things moving so his diet will need to be healthy! I decided when he was born that now is the time to get us all on track and finally clear the house of the things that Kingsley (and us!) shouldn't be eating anyway so that when he starts eating our diet will be all good stuff.

Then Kingsley started eating.

Or, didn't start eating, I should say.

As with the girls, I made bags and bags of food for King. Our freezer was stocked - rainbows of local, seasonal goodness. Kingsley showed some of the signs of readiness and then... nothing. He had no interest. Months passed. No interest. Small bites. I became desperate. I bought jarred food - the mixed meat/vegetable kinds because he wouldn't take any finger foods and I draw the line at making pureed meat (did that with Rachel - Oh Maude, that was disgusting) and he ate a bit. One night after Christmas I sent Jeff out for a couple jars of food and he came home with pureed 'casseroles'. Repulsive. They smell like dog food and taste about as good, I assume. Kingsley ate them! He ate them all!

How did we end up here? Well, I think it is a combination of things. For one, that pesky Chiari business gave Kingsley a wicked gag reflex. Since he was a wee baby, he's never tolerated things in his mouth. Soothers, bottle nipples, medicine syringes, fingers - if they passed his lips, his stomach would empty. He just never mouthed things. He skipped over that whole developmental milestone. I find it both incredibly cool and incredibly frustrating how human's grow and learn to do things as babies and how missing a step can just topple the whole order of things.

After his decompression, I realized that his gag reflex was no longer as strong. That's about when Jeff brought home those gross jars. It was a breakthrough. He would EAT! I was ready to go full steam ahead and start addressing this food thing. Then he had surgery again and was on his stomach for three weeks. Set back. Then he got the flu. Then he got a UTI.

And so here I found myself. As of his 14 month birthday, Kingsley would eat 5 pureed casserole-type varieties of jarred food and nothing else. Even worse - they are five very specific types of food. I have tried different brands, the organic version of the exact same brand - no way. I KNOW jarred food is not pureed McDonald's. I know this. And yet, it feels like a huge mom fail to be *here* after spending the last five years moving away from things like this. I buy 25-45 jars of babyfood in a single grocery trip. That feels weird. It feels wrong. I feel like people are looking at me funny. Especially when he's with me and they see how old he is. A couple of weeks ago, while ringing in my 40 jars, a cashier whispered: "Don't you make your own?" and then I had to stand there politely smiling as she told me all about one of her granddaughters who was a picky eater, too. Not.The.Same.Thing.

A couple of weeks ago I was talking with Kingsley's OT about feeding him and what to start trying. She listed off foods and I'm sure my face showed how badly I was cringing inside. Processed. Processed. Sugar. Preservatives. Additives. She reminded me that the goal is not nutrition. The goal is to teach him HOW to eat.

Yes.

Teach him how to eat.

And so, that is what we're doing. And the last two weeks have been incredible! It's slow going, but day after day, Kingsley is learning to eat. I am ridiculous - nothing he is eating is horrendous, but I still cringe when I'm shopping for him. It is not doing his digestive system any favours, but things are okay.

Since mid-March, he drinks milk from his sippy cup all by himself. He loves milk. He drinks enough of it that I can now put his PEG into his milk and know that it'll get in him. He eats minigo's - not plain yogurt with actual fruit, just minigo's. He even gets excited when I pull one out of the fridge. He eats oat cereal and as of yesterday I can mix fruit in it and as long as it's not too obvious, he'll eat it. He can eat an entire Gerber puff without having to have it broken into 5 pieces. Today, he even picked one up and put it in his mouth all by himself. He will pick up and take a bite of a veggie stick (a cross between a french fry and a potato chip) and eat it.

I have a list of things to attack next. I'm most excited about getting him to drink water so that he can drink THAT instead of waking me up in the middle of the night when he's thirsty. Oh, I can dream...

On a related note - yesterday, he put a toy in his mouth for the first time and laughed like it was the funniest thing ever. Today, he mouthed his socks and then put my phone in his mouth. He tried to bite my nose. He seems thrilled with this new skill of putting things in his mouth and I LOVE IT.

In two short weeks, how far he's come absolutely blows my mind. He still throws up every other day or so and every meal involves a decent amount of gagging, but he is learning how to eat.

And when he gets there, I will have plenty of organically grown, homemade, whole food meals ready for him ;)

Sugar Bush

2011-03-28T10:56:00.001-04:00

Yesterday, we randomly decided to do something very Canadian - we went to a nearby sugar bush. I haven't done this since I was a kid, but have wanted to for a long time. There's a small window of opportunity for this - when the night temperature is still below freezing, but the day temperature allows for a thaw and the maple tree sap to start flowing. Sap is collected in buckets, or more modernly in a series of tubes and barrels. The sap is then boiled, then filtered and voila! Maple syrup. YUM! Since I've given up cane sugar and artificial substitutes for Lent, I am all over maple syrup right now.

I won't even tell you how long I made the girls stand there while I took these shots.

I will pretend I am just that good and got them very quickly.

The best part of visiting the sugar bush is obviously eating pancakes. We ate a ton. Oh, so yummy. Kingsley was not interested, but did eat one whole baked bean. Progress.

After stuffing our faces, we wandered around outside to burn off some of the syrup. One thing always on my mind - how am I going to bring Kingsley here when he's older? I have no idea. He got in the pancake house fine, and onto the play area, but we have an awesome all-terrain sort of stroller. He couldn't go into the woods with the girls and I and the playground was so retro, there was nothing there for him now or in 5 years from now. Hm. I don't think winter is very accessible in general.

It was sunny, but so cold. We didn't stay too long outside. I really should've put the girls in snowpants or splashpants, but I had no idea what we were getting into! Next year I'll be prepared.

The other cool thing about our trip was that my OB was there with her family. I absolutely adore my OB and haven't seen her since my 6 week post-partum check up. She was a God-send when I was pregnant with Kingsley, so it was cool for her to be able to see him now, all gorgeous and healthy.

Sibling Rivalry

2011-03-25T14:44:00.001-04:00

Lalala, this is fun here playing together.

Hey, now. How come I don't have anything cool to pour with?

Hm. Yep, that does look like more fun than what I'm doing...

Hey Cor, I'm just gonna take this one here...

NO KINGSLEY!!

GET YOUR OWN TOYS!!

Ho hum.

Hi Mom.

Oh, hai. Now, that looks kinda neat.

I am going to need that now, Rachel.

No way, Kingsley.

You're not the first cute baby face to try to steal my stuff, you know.

This is my innocent face.

Oh, look. Cordelia still has that scoop thing.

Let's try this again...

Things have been insanely busy this week. Rachel had the best fifth birthday party of all time. Kingsley is making gains in leaps and bounds. Spring has turned back into winter. Tomorrow is the big local spring mom to mom sale. And that's about it, but for some reason it feels like so much more is going on!

ShamRockStar

2011-03-17T23:56:00.001-04:00

I'm not going to lie, I've been really frustrated lately. Between the surgeries, recovery, the flu and then his first UTI (NOT the shunt, phew!), it seems King can not catch a break. Whenever I get excited about finally getting ready to move forward, something stalls him all over again. I remind myself that this is a journey. It's not a race, there is no deadline or finish line. Kingsley will get where he's going when he gets there.

Then I'll panic and think he'll never do this or never do that and start wondering when the last time I saw his legs move and why is he gagging so much, OMG it's the Chiari, he's going to have to have another decompression and a shunt revision at the same time because I'm sure he hasn't smiled in the last hour and now he's arching backwards and he has no motivation to move how am I ever going to teach him to do anything and on and on and on.... You know how it is.

Someone please come shake me when I start thinking like this, okay? Remind me that my son is a capital R ROCKSTAR.

Now that he's recovered from surgery and the flu and he's gone through his course of antibiotics, my baby boy has returned and I can finally breathe again. His legs are moving as much as they were post-surgery, which isn't a ton, but it's not a regression so we're fine. He's not really arching back that much, unless he's trying to see something behind him. And now that he's not sick, he's not gagging or throwing up anymore (shocking, I know - who would've guessed the two were related? ;) ).

Oh, and naturally he is suddenly doing some awesome things.

Like talking.

He's got a handful of words and a few signs he does now. I love it. He's finally starting to let us into his head. He's also starting to sing, which is mostly just him belting out AAAAYAAAYAYAAYAAAAA or BAABABAAABABAAAABABABAAA. It makes me laugh. He'll have a whole babbling conversation with you, back and forth, and now he's starting to imitate sounds. Love it. I can't get enough of his sweet little voice. OK, maybe at 3am it's not the sweetest sound, but during daylight hours, I love it.

And dancing. (the action begins at 0:30 - I couldn't figure out how to edit it)

And the most ground breaking thing to date: picking up his cup and drinking all by himself.

I almost fell off my chair at dinner. I fed him a jar of that nasty food he likes. He yelled for more. I fed him another one. He barked at me to let me know he was thirsty. I held his cup for him, did the usual hand-over-hand to get him to hold his cup (which he immediately let go of the second I eased up on the pressure). As my arm got more and more tired holding his cup and my dinner went from hot to lukewarm, I mentally started to list the goals I was going to start attacking:
1. hold his own cup;
2. feed himself;
3. eat finger foods;
4. eat a bigger variety of foods....
Finally I dropped the cup on his tray and started to eat as fast as I could before he whined for more when what do I hear? GLUG GLUG GLUG GLUG. I turned to see him holding his cup with two hands drinking like it was something he's done every day. I kid you not, he has never even picked up his cup, Ev.Er. nevermind put it to his lips. In fact, I can count on one hand the number of things he's ever put to his lips other than his own hands. So, of course I grabbed my phone and my camera so I could take video and pictures at the same time. He kept looking at me and smirking. The little stinker. I wonder how long he's been thinking about that one.

He then picked up one of the dried chick peas that he has on his tray to play with during dinner and kept teasing me by bringing his hand toward his mouth like he was going to eat it! WHAT?? He didn't, which is good, but I'm going to have to trade them out for something he could actually eat and start watching the little choke-ables. All in time, I tell ya.

OK, so talking and dancing and feeding yourself are not huge exciting things for most babies. Worthy of a video, sure, but not tears of joy and celebration perhaps. My Kinger is not most babies though, so holding his own cup qualifies him for a big party and a week's vacation down south.

The other big exciting things around here revolve around the world melting.

Spring is COMING!! You can actually see grass.

But before that happens, my big baby girl is turning five. FIVE. In two days, I will have a five year old. How wild.

Brain Power

2011-03-10T22:24:00.001-05:00

So, last week I was talking about things that people ask or say that are odd or rude or whatever. There is one thing that I'm not asked very often that I sometimes feel like is the elephant in the room. How do you say it, really? What would be the appropriate way to ask... you know... what's up with Kingsley's brain? Like, the smarts side of his brain. Is he going to be smart, or... you know. Um, where's he going to go to school? Is he going to have an EA... maybe? Awkward...

Maybe it's just me, maybe people aren't actually thinking about it and wondering. Maybe those stupid news reports after the in utero surgery study came out that talked about the severe impairments have just made me unnecessarily defensive.

But in case people are wondering, I'll tell you: Kingsley is brilliant.

For real. No exaggeration. Okay, maybe a slight bias, but only very slight.

And he's not the exception either. Spina bifida on it's own has no effect on intelligence or cognitive functioning, so says the research I've been reading. YAY!!

There's a small 'but' though. While SB has no effect on any of that stuff, hydrocephalus and the big bad shunt can. Not necessarily will, but can. Now bear with me, because this mat leave has done a number on my own brain, but I believe approximately 85% of people in general have an IQ that is average or above average (an IQ score of 85+) as compared with 80% of people with SB that have an average or above average IQ. That's not that far off. Having the SB+hydro combo makes Kingsley just slightly more likely than any other child to have an intellectual impairment.

Statistically, people with SB have an IQ score of about 10 points less than their siblings. Here's where I'm going to have to brag a little bit. See, Jeff and I are smart folks. S-M-R-T, yes we're so smart! ;) And the girls appear to be a bit more than brilliant. Ergo, my conclusion that Kingsley is merely brilliant is probably correct. No bias needed.

While Kingsley won't be as cognitively impaired as recent media may like you to believe, there is a good chance that he might have some trouble with skills such as hand-eye coordination, non-verbal learning tasks, and a few other things. They are real and potentially problematic issues that we'll have to deal with when he's in school, but we'll deal with that ship when it sails. At this point though, even with potential learning difficulties, we have no reason to believe that he won't do just fine in school, do everything academically that his peers are able to do and even go on to be a lawyer like his Daddy if he so chooses.

I won't lie, I am still nervous about all of this. He seems to be achieving most of those non-motor milestones that he should be and it's easy to explain away the ones that he has not yet achieved such as understanding 'no' and 'give me' (he isn't mobile, so doesn't get into stuff he shouldn't). He has every other item on the developmental checklists that we receive every few months from the health unit (other than sitting independently, pulling to stand, cruising and taking steps of course). I feel like part of me is watching the other stuff just as hard as I'm watching the motor stuff. Always waiting for the other shoe to drop.

It's my WHAT??

2011-03-09T21:52:00.001-05:00

It's my birthday!!

OK, now I know you're all panicking now, realizing that you didn't get me anything. Well, no worries. Jeff got me the best gift ever this year and one of my BFF's sent me chocolate, so I am SET. :)

But, if you do have some money just burning a hole in your pocket and you want to do something with it, might I interest you in one of these options:

1. The Spina Bifida & Hydrocephalus Association of Ontario is always happy to accept donations at this link: http://www.sbhao.on.ca/about-us/donate They do wonderful things in this area and have sent us a lot of great information and support.

2. How about this little guy named Shea. http://savingshea.blogspot.com/ Shea is a four year old ball of gorgeousness that has SB and is an orphan. Shea needs a family or else he will end up in an institution in eastern Europe for the rest of his little life. Actually, Shea has a family desperate and eager to adopt him, but they need some money to make it happen as international adoptions are not cheap. It's very easy to donate - click the ChipIn box and you do it through paypal in about 10 seconds. Simple. Amazing.

Not only is it my birthday, but for a lot of us it's Ash Wednesday, or the start of the Lenten season. No better way to start off this time of reflection, sacrifice and hope than to spread a little love, am I right? ... and nothing says love like some good old fashioned Catholic guilt, eh? LOL!!

My birthday has been fantastic so far. I sat around the house with my three little babes and had lots of family come visit me. No better way to spend a day! Cheers to a fabulous year to follow this great day. :)