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 28, 2011

Accessible

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. 

Tuesday, April 26, 2011

How Old is He?

"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.

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. :) 

Tuesday, April 19, 2011

Planning

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!

Friday, April 15, 2011

Oh, Sad Times

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.

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. :) 

Saturday, April 9, 2011

Rockstar



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.

Schroeder Piano.jpg

Thursday, April 7, 2011

Moving

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

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.

Friday, April 1, 2011

The Food Issue

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 ;)
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