Showing posts with label eating. Show all posts
Showing posts with label eating. Show all posts

Saturday, February 1, 2014

School

It is February and I have a four year-old, which in these parts mean one thing: SCHOOL. I know it's different across the country and everywhere else, but here our kids start Junior Kindergarten (JK) September of the year they turn 4, which means it is now time to register my boy. It's optional, I can wait until Senior Kindergarten (SK) or even grade one, I think. But I don't want to, he's ready for this.

Step One is registration. This happens right now. It involves contacting the school for a registration package and tour of the school, which we didn't need because the girls go to the school and I've been there enough. If your child is like most children, you drop off the paperwork and that's the end of it until the orientation stuff happens later in the year. If you're child is like Kingsley, you have to casually mention that to the school secretary. It's hard to be casual. We get to fill out all of the paperwork and then move on to step two.

Step Two is a meeting with the principal. The school secretary is going to call us back with a time. I'm told this is more of a casual meeting, just to feel things out and understand who Kingsley is.

Step Three is a big meeting with all of Kingsley's people and all of the school's people. We discuss what he will need to be successful in school and then how that will all be put in place, so I'm told.

I am not all that concerned at this point. Kingsley's needs are pretty straightforward:
* he needs a barrier-free environment, which the school is as far as I can tell
* he needs help with his bathroom business and medicine during lunch hour
* he needs someone to transfer him from his wheels to the floor or to a chair and then back whenever he wants
* he needs a chair at table height that is adapted somehow so that he can sit stably to do seat work and eat comfortably
* he needs someone to help him with his outdoor clothes, especially in winter and possibly help him navigate through recess
* as of now, he needs someone to make sure he eats, drinks, and doesn't choke or puke; this could change if he just decides eating is cool

The school should be able to figure all of that out. We are hoping that there will be an EA (educational assistant) in the room to help with the transfers and transitions to/from outside and hopefully with snacks/lunch and recess. I have no idea how the bathroom/medicine stuff works, but it will be figured out. Kingsely's current PT will help get the chair ready by September.

I have homework to do in the meantime. First, I have to figure out how to answer all of this paperwork. There are so many questions that don't have simple answers. Second, I have to make one of those All About Me books for Kingsley - an easy-to-read book discussing Kingsley's strengths, interests, diagnosis, needs, and whatever else I think his school should know about him. I have seen fabulous ones that are super creative. I am not creative. This will take some figuring out.


In the meantime, we are still in the depths of winter and up to our eyeballs in snow. It warmed up enough that I was able to take Kingsley out to play in the snow today, which he loves.


Thursday, December 12, 2013

Duck and Cover

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

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

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


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

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

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

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

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

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

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

Friday, February 8, 2013

Eighteen

Winter must be making people bored. I keep seeing blog posts with 48 Questions or Facts About Me or the like. Well, get excited, because here are some Things You May Not Know About Kingsley.


1. He's the youngest of five grandchildren on my side and the only grandson.

2. He has been in two commercials.

3. His nicknames are King, Kinger, Kings, Kingy, Kingsy, Kingabing, Binger, Bingy, Bubba, Bubadoo, Bubs, Kiki, Buddy, King-gi, Frog, Frogger, Baby Boy. He responds to all of them.

4. His favourite shows are Toopy and Binoo and Max and Ruby. If you put either of them on, he'll yell for everyone in the house to come and see that they're on.

He was actually saying: "OH NO! Don't turn off Toopy and Binoo!" when this was taken

5. His favourite App is Another Monster at the End of this Book. He laughs so hard, over and over and over. It doesn't get old for him.

6. He does not like my singing and will tell me to stop and close my mouth. He doesn't really like anyone else's singing though, so I'm not offended.

7. He's had four surgeries. February 2nd was the two year anniversary of the last one. We know there's a good chance he'll have two of them again, we just don't know when. And then some others.


8. He loves to swim. He uses a puddle jumper and floats on his back and his tummy.

9. We compare his attitude lately to that Grumpy Cat with all the memes. His answer to everything is an automatic NO. Then, he'll think about what you said and sometimes say yes. You have to wait him out.

10. He is a MASTER of Blue Steel. He does it immediately after telling you NO. He also does it after making demands, as if to challenge you to say 'no' back to him.


11. His hair grows incredibly fast. He needs a haircut about once a month, but it takes me about another month to face this fact and do something about it.

12. He loves to tell Knock-Knock jokes. They don't usually make any sense.

13. He still sleeps in a crib, but we have a new bed on order for him.

14. He loves pirates, hippopotamuses, school buses, city buses, and white buses, ambulances, trains, his 'painting' (aka travel-sized, strawberry Doodle Pro), chocolate, Curious George, and Thomas the Train.

15. He takes after his dad and my brother in appearance.

16. He calls all men Daddy, which has made for some very awkward encounters with strangers.


17. He is still a terrible eater. He eats the same thing every day for breakfast and lunch. Dinner is a constant battle.

18. Turns out he loves the snow. Who knew? I thought I would have one child on my side. The inside. Of the house.


Monday, September 24, 2012

The Changeling

Someone has stolen my happy, sweet, charming little boy and replaced him with a grouchy, hollering child who is impossible to please. It's been three weeks and I'm exhausted. He's had days and moments where he returns, as delightful as ever, and then just like that, he's gone again.

It's come down to this. He got a cold at the start of September which lead to a change in eating habits for Kinger. This wouldn't be a big deal for most kids, but for a kid who needs certain things to remain a certain way, it was a big deal. I'll let you work that one out for yourself... which is exactly what King is not doing ;)

After a long week of trying to make things work again, we went back to the doc, who suggested all of the same things that the wonderfully helpful SB community had already told me. Unfortunately, Kingsley hasn't responded to any of that. That leaves us with one choice left: the dreaded hospital. That's where we're heading tomorrow. Ho hum.

In other news, we also got in to see the eye doctor last week for a whole bunch of tests and King is just fine. There was a very good explanation for his crossing eyes and it's not strabismus or farsightedness or shunt-related or anything that he was concerned about. He said it will go away on it's own and that we will just need to follow up every couple months to make sure he outgrows it. Phew! Although, not gonna lie, I was a teensie weensie bit disappointed that he wouldn't be getting glasses. You know where I'm going with this? How insanely cute would King be as Harry Potter flying on a broomstick for Halloween? *sigh* Maybe next year.

Tuesday, February 14, 2012

Things I Love

It's Valentine's Day!!  What better time to think about the things that you love, right? ;)

Right now, I love...

My artistic little boy 
I'll confess, introducing him to crafts didn't even cross my mind. So many things just don't seem to occur to me! He didn't show any interest, but again, that was probably because he hasn't had the same experience with exploring that the girls did. Once I (*ahem* or maybe his OT) brought the craft supplies to him, the floodgates opened. Now he's constantly rolling up to his sisters' craft table and causing mayhem. 

Saying goodbye
There have been so many points along this journey where I pause, panic, and wonder: "Is he EVER going to learn to..." and eating non-jarred, non-pureed food was very top of that list. Because of Kingsley's Chiari, he didn't mouth toys or really anything. He had an extremely sensitive gag reflex which meant he easily tossed back to me anything that I tried to get him to eat. Once he had his decompression, we finally began making very slow progress with him eating food. Eating puree's was an accomplishment. Donating all of these leftover jars to the foodbank is an even bigger accomplishment. I'm thrilled to be saying good bye to puree's once and for all. 

Opening wide
I zoomed in as he was opening wide to shove more of his cupcake in. Yesterday morning, he actually got mad when I tried to feed him his oatmeal. It was the first time ever that he wanted to feed himself a food that he wasn't one of his favourites. He wants to eat now and he wants to feed himself. It's been a great year. 

Curious King
He's fascinated with the stairs. Neither of us really knows where this is going to go or how he's going to finally master these things, but he is enjoying testing his limits and I'm enjoying watching him. So far, when he's at the top he just pulls himself forward until his torso is off the step and his arms are on the step below. Then he doesn't know what to do, so he pushes back up to the top. Repeat, repeat, repeat. At the bottom, he's just aching to hoist himself up. He's too small right now, but it's only a matter of time. 
(don't freak out - he's not allowed near the stairs unless I'm there! the baby gate gets locked at the top unless I'm sitting on the stairs ready for him)

My sweet date
Kingsley and I are taking a break from some of our activities right now and just hanging out more. Last week we went on a date to the mall. He used to hate elevators, but now he loves them.  He also loves timbits, people watching, spinning in his wheels and blowing kisses to all the older ladies that stopped to say hello. He likes to check out the wheels that other people are driving. He also likes to show off how fast he can go. He's a fun date. 


Happy Valentine's Day!

Wednesday, February 8, 2012

Dirty Clothes

It's a little odd, but I get so happy when I see dirty clothes these days.  

Dirty clothes because it's Kingsley that is dirtying them. For so long, his clothes looked pristine, like they weren't even worn. I've made a lot of money reselling them, but that time has passed! 

His clothes get food stains because he is eating food and feeding it to himself. Such a strange hurdle that has everything and nothing to do with SB, but one that we are getting over one meal at a time. His diet just continues to expand and he's starting to eat as much as the girls. No fruit or vegetables though - that's just craziness. 

His clothes are also getting stains all up the sleeves because he rests them on his wheels - his bumbobile wheels, his wheelchair wheels, his dynamic stander wheels. He rests them on there when we're outside the house doing stuff and they get just filthy, but it's awesome because he's out there, getting around. 

His clothes are dirty because his belly sweeps my floor as he crawls from one side of the house to the other. He used to be so passive, we worried that he'd never learn to crawl. He'd just lie there or sit propped somewhere, content to just be. He's not remotely content with staying still now.  He moves from sitting to lying to rolling to crawling to lying to sitting... and then all over again. But it's on the floor where the girls spill and dribble and stomp through in their boots, so he's messy. 

His clothes are getting markers and glue and paint and glitter all over them because he loves to play with his sisters and do what they're doing. He's so much more interested in toys and games and crafts. He colours pictures, he stabs paper with markers, he freaks out when he gets glue all over his hands and wipes it across his shirt... okay, that's not totally awesome, but it's still progress.  ;) 

At night when I take off his clothes and put on his pajama's, I love looking at the mess he was wearing. I used to feel guilty about tossing his clothes in the wash since they pretty much looked the same going in as going out. 

Who gets excited about dirty laundry? This mama. :)  I'm not taking any of this for granted. 

Tuesday, September 27, 2011

Another Check

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


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


Sunday, July 17, 2011

Silly Mom

Hi, it's me, Kingsley.


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

I got myself dressed (check!)




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

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


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

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




I can stack four. 



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

Someone has to tell her to relax! ;)

Tuesday, May 31, 2011

Off the Charts

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

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


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

 I think Cordelia was just as excited by this new skill as I was.
She smothers him the entire time we shop.

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



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


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



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

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

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

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



Friday, May 6, 2011

Milestones - check! check!

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

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



ROLLED ONTO HIS TUMMY!! YAY!!


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

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

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

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

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 ;)

Tuesday, February 22, 2011

Up and Away

Dear Blogging World, 


Yes, it's me Kingsley again. Just wanted to let you know I have some exciting news. 


I'm standing up. Now, I will be able to write more. Mommy can't hide her computer from me!



Check him out!! We had the HUGEST day today. So many awesome things, where do I even begin? Well, I guess right there ^^ Kingsley got his stander! My baby is standing up all on his own. Well, sort of. Close enough!

Today we went in to meet with our PT and get the stander fitted. There were two men that were there to make modifications and adjustments as needed and they ended up doing it right away. I discovered that Kingsley doesn't have stranger anxiety like I thought. Turns out he has women-anxiety. All those pretty nurses in the hospital have done a number on him it seems, but he was all smiles and babbles for the guys helping out today. Adorable.

I forgot my camera, if you can believe that. I even forgot my phone. Huge Mom: Fail there. You'll have to trust me though, Kingsley was amazing. A rockstar? You better believe it! He stood up in the stander after they fitted it for him and just did it like it was nothing. No complaining, not a whine. I couldn't get over how tall he was in it! It was like my baby boy was suddenly the one year old he really is. Wild.


Sidebar for the non-SB'ers: standing challenges lungs and heart in a good way, makes the circulatory system work differently, helps with bone development, and makes bowel/bladder function better, among other things. It also provides a different perspective of the world and had cognitive benefits. Since Kingsley is at the age where most kids can stand up, but he can't, we will put him in a stander to mimic independent standing to get all of these benefits. It will also engage any muscles that he may have functioning in, but have yet been under/unchallenged. 

Later this afternoon, I put him in it again. He did awesome. I expected that maybe he'd be okay for a couple of minutes and was told to just keep it to that - take him out as soon as he seemed unhappy. Unhappy?? Hardly! I had to finally take him out of it after 20 minutes because I was worried about pressure marks and the wrath of his PT ;) He was completely happy standing there, playing with his toys like it was no big deal that this was the first time he had ever stood up, EVER. He was working hard though, grunting away as he played like he was putting in the workout of his life. Cordelia desperately wanted her turn. Why? I don't know, she's two. I guess that looks like fun.

Also, while we were meeting with his PT we got to try out the two castor carts that she had dug up for us. We actually ended up taking both home as they're a bit different and we want to see which Kingsley seems to do better with. One has amazing response and steers so easily, but the wheels are a bit awkward for him to get. The other is older, a bit beat up, but the wheels are in a great place for him. I could not believe how he seemed to immediately understand what the deal was. We strapped him in and he reached out and touched the wheel almost right away.



So far, he's diggin them. He sits in both pretty comfortably and thinks his sisters pushing him around is HILARIOUS! Poor kid is going to get a brain injury from all the bumper cars Cordelia was trying to put him through.


As you can see there, the girls are also loving the carts. Rachel raced around the house yelling: "It's just like being in a WHEELCHAIR!!" with the same excitement that you might yell: "It's just like FLYING!" She loved it.  Cordelia was also a fan, but could not master the steering as quickly as Rachel. She also did not like that Rachel kept trying to lap her by bumping her cart out of the way.


As if that wasn't enough excitement for one day, today marks three weeks for Kingsley (less a day, but close enough) which means we're good to resume normal life. He got to have a normal bath (yea!) and sit in his booster seat again at dinner.  We have been talking about starting finger foods ever since I realized his gag reflex has really eased up post-decompression, but then he couldn't sit up and yadda yadda. So, today was the day.


He didn't eat a bit. Not a one. But, it was there and he had a plate. It was a big step for us.


Look at that mastery of fine motor skills! What a pincer star. ;)  He even did the obligatory I-Have-a-Plate-and-I'm-a-Baby-Therefore-I-Must....


Dump-and...


Toss.

Good job, buddy. Maybe tomorrow we'll actually get something in his mouth. Maybe. Cordelia was quite okay with him not eating his dinner. She came and practically licked the tray. Yup, that's my girl.

Soooo... How was it, really? Seeing my baby get his first wheels and some serious equipment? No lie, it was awesome. I got a little teary, but it was honestly happy tears. I was expecting some angst. A little heartache? Nope. I think all the other SB mama's out there have trained me well. All I saw was doors opening up. The light in his eye when he saw the view from waaaay up in his stander. The way he watched his sisters zoom around as if he was trying to figure out how they were doing it. The way his hands just rested, ever so casually, on the wheels. I'm so excited for him! Rachel has the right idea. This is a really cool thing.

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