Wednesday, December 28, 2011

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

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

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! ;)

Wednesday, December 21, 2011

Christmas Miracle

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.

Uploaded from the Photobucket iPhone App

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.

Friday, December 16, 2011

The Cheer has Left the Building

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.

Tuesday, December 13, 2011

Holiday Happies

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. :)

Wednesday, December 7, 2011

How Much Can I Squeeze into One Post??

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: 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. 

Saturday, December 3, 2011

Round Three?

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. :)

Wednesday, November 30, 2011

All I Want for Christmas...

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.

Saturday, November 26, 2011

Rifton Dynamic Stander

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

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?

Thursday, November 24, 2011

One Year

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.

Monday, November 14, 2011

We Met

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!

Friday, November 11, 2011

Tomorrow, We Meet

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.

Wednesday, November 9, 2011

Awesome, Awesome, Awesome

"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:  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 ;)


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  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.
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