Showing posts with label Bumbobile. Show all posts
Showing posts with label Bumbobile. Show all posts

Tuesday, June 12, 2012

Yogini

I've mentioned before that I love yoga. I love it, love love love love it. I guess it's no surprise that my kids were introduced to yoga before they were even born and that it continued as soon as they came home. I stumbled on the best book called Itsy Bitsy Yoga and dogeared that thing until I knew most of it by heart. Yoga is in their blood.


Truthfully, though, I haven't done yoga with Kingsley as much. The Itsy Bitsy moves are developmental based and he eventually got to the point where the only poses/songs he could do were the young baby ones, which he was bored with. Once he got too heavy for Mom and Baby yoga, that was pretty much it for my teeniest yogini.

Or so I thought!

A few weeks ago, Rachel popped her yoga DVD in and rolled out her mat in the middle of the day. I was running around doing stuff, but stopped short at the doorway when I saw KINGSLEY DOING YOGA. Just sitting there in his Bumbobile copying the video and loving every minute of it.

lousy pictures, I know. I was being stealthy at the doorway and trying not to be noticed

Well, now don't I feel dumb for not including him in our yoga fun. Even moreso when I happened to catch him on video doing some spontaneous yoga in the backyard one afternoon.



Is there such thing as a mat mom? I am going to start a new trend. I see a reality TV show in my future ;)

Wednesday, April 18, 2012

Racing

A few months after Kingsley was born I stumbled upon the Couch to 5K running program and started running. I am not a runner, really. My mom, my brother, and my sister all run and when I was in school I was on the track teams doing distance running, but I did not like it. It's one of those things that I am moderately alright at doing, but hate... Until baby weight starts jiggling and then I was desperate to try anything! ;)

Running may seem like a symbolic choice of activity for me - doing something that Kingsley can't do - but I choose to look at it in the other way: running is something that I can do. No, I don't love it, but occasionally I get a mild euphoric rush when I feel moderately good about doing it and it allows me to do some good by participating in a few (very few) select races that raise money for things that are important to me. 

One of those races is coming up in 11 days (*gulp*). It's called The Forest City Road Race and it raises money for the centre that Kingsley gets services from. So many of the services we access are not government funded and are free to us because of donations and fundraisers like this one, so I am happy to help them out a little bit by participating.  My mom and I are doing the 5k together. Like I said, she is a runner, so although she is almost 30 years older than me, she's faster, more fit, and has been training better for it. I'm getting nervous! 

And when you get emails like this, how could you possibly not do something? 

Forest City Road Race top banner
 Issue: April 2012             www.forestcityroadraces.com 
Thank you for registering for the   



Have you set up your pledge page and started collecting pledges?  100% of the pledges go directly to services and programs at TVCC, that support kids like Kingsley.  There's still time. 

Meet KingsleyKingsley
Kingsley is just one of the shining stars at Thames Valley Children's Centre. He was born with Spina Bifida. 

Like many of the children and at TVCC, Kingsley and his family need help and support to give Kingsley the life he deserves. That is all made possible by you. It's your dedication and support of the London Life Forest City Road Races that make it possible.    

Please spread the word and share this Newsletter with Family and Friends   

beyond disability 

If you would like to make a donation or pledge, click here: 
http://www.onlineregistrations.ca/forestcityPledge/View/dashboard.php?lname=Bell&fname=Jill  **Note: those are not my legs ;) 

Thursday, April 5, 2012

Transfers

I give up.

I completely and utterly resign myself to the fact that there is no point in worrying about Kingsley in any capacity. I worry, I stress, I wonder, I ponder. I question whether he will do whatever and when something will happen.

It's useless.

My latest query is when Kingsley will learn to transfer himself in and out of his gear and how he'll do that, when he'll be strong enough... We've been trying to make some long-term decisions and his timeline for independence is a factor, see. I've been talking to his therapists about it this week, some other families, doing a little Googling and Youtubing.

I think he was listening.

Today, I heard King chase after his sisters in his Bumbobile as they ran for the stairs and then up them. I heard bumps and thumps. I called out and he responded calmly, letting me know he was fine. He sounded amused.

This is what I found him doing:


Right after this, he decided to hoist himself up on the bottom step. He didn't quite get there, but he did manage to get his chest up onto the stair. And then he stole my iPhone, turned it on, found the photo icon, and watched himself pop out of his chair over and over and over.

So, that's that. No point worrying anymore! ;)

Sunday, January 8, 2012

Full of Awesome

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.

Wednesday, December 28, 2011

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 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: 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. 

Tuesday, August 16, 2011

Mischief Managed

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.

Monday, August 15, 2011

Unexpected Toys

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. :)

Wednesday, June 8, 2011

More Wheeling

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. ;)

Thursday, May 12, 2011

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

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.

Friday, April 29, 2011

Rocking and Rolling!

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

Thursday, April 21, 2011

Bumbobile Day 1



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


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. :) 

Thursday, April 14, 2011

Pimp My Ride

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. :) 
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