Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts

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/

Thursday, March 22, 2012

Explosion

They all said it would happen. They all said it was coming. Just be patient. Just wait him out. No reason not to. All in his own time.

And as usual, 'they' were right.

Kingsley is starting to talk. Just like that. Out of nowhere. His vocabulary has pretty much tripled if not quadrupled in the last two weeks. Now, given that he had a vocabulary of about 5 words, it's not like he's caught up or anything, but in time.

He's babbling, he's making new sounds, he's imitating, he's labeling and requesting (manding folks, I have manding!!).

he also got a rockstar hairdo this week


Naturally, we start speech therapy next Wednesday.

I think this is it. He's mastered sitting and crawling and transferring from crawling to sitting. He's a pro at rolling and steering and every other gross motor skill he can tackle right now. The kid is doing chin ups for Pete's sake. He's playing and colouring and eating (sort of). He's kind of run out of things to master, other than the talking. So, talking he is.

*sigh of relief*

Once again, I reference one of my fabulous mentors who has never yet been wrong. :) http://themclellands.blogspot.ca/2011/01/taking-scenic-route.html

Wednesday, November 9, 2011

Awesome, Awesome, Awesome

"I don't know how to ask this, so I'll just say it..."
"I hope this isn't a stupid question..."
"That's amazing... I don't get how it happened."
"Yeah, explain that to me, I mean it's awesome, I just... how...?"
"So... I saw your Facebook status. How did he do it??"

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


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

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

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

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

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

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

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

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

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

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

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

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


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




that's for you Kris ;)

Friday, October 14, 2011

Our Centre

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

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

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

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

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

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

Then, they decided that the picture was pretty cute and asked if they could put it on the homepage. http://www.tvcc.on.ca/
Thames Valley Children's Centre
Cordelia will one day hate me for saying this, but she is absolutely head over heels for this kid. She carried this picture around and 'introduced' him to all her dolls with big sighs and swoons. She doesn't even acknowledge that Kingsley is in the picture. He is pretty cute ;)  

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

2011 Holiday Home Tour, presented by the Thames Valley Children's Centre Auxiliary

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

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

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


Wednesday, August 3, 2011

Average

Music to my ears.

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

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

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

Hey there, handsome. 

Friday, July 15, 2011

Development

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


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

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


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

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

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


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

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


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

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


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

Thursday, April 7, 2011

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 ;)

Wednesday, January 12, 2011

Let's All Hurry Up and Wait!

Yesterday, Kingsley's PT and new PT-to-be came to hang out with the cutest boy in my world and I asked about his legs not moving much again. They watched him, played with him, were stunned at his progress in sitting and tummy play in one short week, and then reluctantly agreed that his legs were pretty still compared to a week or two ago. I called his neuro nurse and left a message.  I held my breath and stayed off the phone until 6pm, anticipating a call back, but it never came. I relaxed. A little bit.

This morning, I didn't even think about it. Kingsley had another appointment, this time with a Gastroenterologist (poop doctor) and while we were waiting, his neuro nurse came by and asked if we had time to meet with his neurosurgeon afterward.... wahn wahn waaaaaahn. :(  Nothing too noteable - it is still too soon post-op to do another MRI and see if anything has changed for the better or worse, so we have a follow up appointment in one month and I am to watch and see if anything considerable changes in the time being. If there are big changes for the worse, I am to call and bring him in earlier. Could be a fluke. She mentioned the S- word. This time it was 'detethering surgery'.  *hurk*

And as usual, Kingsley continues to impress in other areas while this one little thing keeps bringing him (or me, really, he's happy as ever!) down. His gastro doc wants to see if he can go without PEG (Miralax/Restoralax depending on where you live) and do something more natural, so we are going to start giving him a tsp of ground flax seed at each meal and gradually decrease the PEG. He says Kingsley has some tone, so there is a chance at that stuff not being as much of a problem... if you don't know what I mean here, that's probably for the best. ;) 

And as usual, the resident did feel the need to ask me if I took folic acid when I was pregnant. I am sure this is vitally important information for a gastroenterologist resident to know - that is relevant to his pooping, right? Yeah, thought so. Gee, I wish more people felt the need to ask about that.

 
So, here we sit. :) More waiting, more wondering. No real answers. Possible surgery. We've been here before. I really wish that this road was simpler. Is it ever simple? At least we're sitting pretty, har har.

Tuesday, January 11, 2011

I'm Paranoid

My apologies for anyone who is going to have the Jonas Brothers in their head all day. You're in good company because it's what I have thought (and then sung) at least a hundred times in the last 24 hours. I don't even know what happened or if this is in my head or UGH! I guess paranoid is the only word that sums it up.

It stems from Kingsley losing functioning. I didn't see it. I know why I didn't see it, I know I wasn't the only one that didn't see it. I know we're all kicking ourselves wondering why we didn't catch this earlier or why we didn't even realize it until it had gone so far downhill. I also know that it would've been really hard to see something so subtle changing so minimally on a daily basis when you spend all day every day with Kingsley. I get it. And I also know that no matter when I had caught it, we would've ended up in the hospital with the same result. I know this.

But it still makes me ill to think about. I missed it. I didn't see my son losing his leg functioning. I don't even know when it happened.

I was talking to his OT the other day about it and we both said what we both knew - he was making SO MANY gains in other areas. We were so focused on what he could do, we didn't see what he wasn't doing. His fine motor, his communication, his social skills, his time on his tummy and moving around with his arms were all doing amazing! No sign of anything wrong.

Which brings me to my current paranoid state.

Kingsley is doing amazing. A. May. Zing. He's sitting up on his own!!  I sit him up and he just stays there (mostly), playing with toys, looking around. He even corrects his posture or catches himself from falling (although he still needs to work on this a bit).   He's never done this before. Even in the summer, before I missed whatever I missed, he wasn't sitting up this well. So awesome. And he's talking up a storm! He says MOM/MAMAMAMA and actually means ME. He says BUH-BYE and I swear he's saying HIYA. And in between hi and bye, he's got a whole lot of babbling and repeating sounds.  He's also right back to where he was pre-surgery with his tummy time and pushing around on his arms.  He's close to army crawling, I can feel it. He's eating more (alleluia!) and sleeping alright (don't get excited - still up about 3x, but at least he goes right back to sleep).  Things are going great.

Did you just hear that doom music play? Cue the Jonas Brothers again.

He's not moving his legs much. My mom asked me about it over Christmas and I was able to answer with a firm YES, he was still moving just as much as ever. Big kicks from the hip, all the time (I say kick, but really he's just lifting his legs from the hips, like doing a squat on his back). She hadn't seen him doing it that day because when he's sitting on a couch or being held, he doesn't do it as much and that's all the had been doing, but during diaper changes and lying on his back playing, it was there. Strong. When his PT was over during the holidays, he did it constantly, on cue, the whole time she was here.

Yesterday, we had clinic (which is noneventful for reasons I'll save for another day) and the developmental paediatrician had him on his back, asking about his leg movement and... he just lay there. It wasn't until she said, "Oh, there's what we're looking for!" and he kicked that I realized what was significant here. Not the fact that he kicked, but that he only kicked once.

This morning, I was getting him ready (cathed) and trying to get the girls dressed and all the usual morning insanity and the thought crossed my mind: I'll just prop the bottle here and get Cordelia dressed or this will take all morning... Nononononono.... Instead, I sat there while Cordelia raced around the house with a hairband around her waist (and nothing else) and watched Kingsley's legs.

I can't do it again. I can't do the hospital. I can't let them cut my baby's head open again. Once was bad enough - I didn't really know what to expect or what was happening. I didn't have time to think about what they were actually doing. If he has to go through it again, I don't even know how we'll do it.

Maybe it's a fluke. Maybe he's just tired. Maybe his diaper is too bulky. Maybe maybe maybe. Maybe it's a shunt problem.  Never thought I'd be praying for a shunt failure. Please give me something mundane and boring - give me teething, give me a UTI, an ear infection, a wicked diaper rash, but don't let this be what I'm afraid it might be.

His PT will be here in a half hour. Can we stay in this limbo of not knowing? Because if my paranoia is justified, I don't want to know.

Thursday, December 30, 2010

Post-Op Head to Toe

Christmas Eve marked one month post op for Kingsley.  So much has changed in the last month! So much is different than it was three months ago and is light years from where it was just six weeks ago. But there is still so far to go. With every day that goes by, I find I'm still holding my breath, waiting, praying that we see more changes.  I feel like that clock is still ticking, counting down to some invented deadline of March 1 when everything that is going to happen will have happened and anything that hasn't returned is lost forever.

Where he is now though, is pretty amazing. My little rockstar has been showing off the past month.

Starting at the top: his shunt is doing fine. No problems to date. We are closing in on his one year shunt-iversary - less than a month to go. That's a big milestone. His hair has grown a lot lately. I'm tempted to get it cut.  It will no longer go into a cute faux-hawk, so I've been settling for the classic church boy (or Senator Kingsley, for my sister), which makes me laugh. It's starting to grow back over his new scar, which is also continuing to heal nicely, or so I'm told. I don't have a lot of experiences with scars. His still seems angry red and huge to me, but what do I know. Soon, half of it will be covered by hair and it won't be so obvious. I feel like I'm hyper-aware of it when I'm out in public with him. I don't want freak-show stares and I don't want sympathy stares. I realize he has a lifetime of awkward stares coming at him and this is probably a really stupid and futile thing to be wishing for. So... there.

More head stuff... He had his third tooth pop through this morning! Top right.  He's congested, but otherwise is taking it in stride. I have really good teethers! He is also chatting so much, which I can't get enough of. His little voice is adorable! He says buh buh buh buh bah bah all day long.  In the past week he's added in puh, pa, and now MAMA! I think he means it, too, not just random mamamamama babbling. He does it when he's mad or when he's upset about something. He'll look around and sort of half-whine, half-yell it until he sees me and then it's all yell until I come rescue him. That's my boy. ;)

One more head thing. I have read about kids with SB having reactions to loud or sudden sounds. I can't recall if it was attributed to the shunt or the Chiari, but I've noticed Kingsley definitely has this problem. He hates when I use the handheld mixer on any level above one - instant screaming. The vacuum is also feared. The Magic Bullet is a nightmare to use when he's anywhere in ear shot. Christmas has produced quite a number of toys that seem to be on the same decibel. He got this cool car race track thing from Grandma that sends him into hysterics. The girls are in love with it, unfortunately.
 (one of the scary toys is in the background. you drop a ball down and it makes a noise on each level. evil)

An exciting development for me is that Kingsley is beginning to eat more. Yay! He eats three meals a day, about 1/2 jar or 2-3 cubes for breakfast and lunch, a full jar or 4-5 cubes for dinner. He doesn't always eat it all, but he is getting there.  He's currently into the meat/veg combos and not really interested in anything fruity or sweet. Definitely Jeff's kid.  I've also caught him putting something in his mouth three times in the past week. That seems like nothing, but for a kid who gags on his own fingers, this is a big deal. He opens his mouth when you put things in front of him.  Whatever you put in there, he will automatically spit out, though. Baby steps.
("You want me to do what with this cookie thing?" he didn't eat it)

Kingsley used to rock at tummy time. He would push up into a baby upward dog, pre-surgery. He could roll from his tummy to his back going left and right. He could do Superman's with his arms out, his chest up. He was just on the brink of army crawling. Since his surgery, this has been the biggest area of regression. It has bothered me a lot that he lost this area of strength, although it's for obvious reasons. I'm sure it didn't feel good, considering where his incision was. He's regaining the strength quickly now. He gets up on his elbows and tolerates being on his tummy without too much complaint. He tends to lie sort of sideways with his head down, then push up for a bit, then lay back down for a break. He is able to roll tummy to back again.
(down, up, down, up, down... this is as high up as he goes now)

The B and B stuff (bowels and bladder) are just fine. Nothing exciting going on there, which is just the way we like it. His urodynamic study in mid-November was fantastic.

So, moving along down the line we are at the big stuff.  Looking back now, I'm able to think more objectively about what he was actually able to do by the time we got him in for surgery. The truth is - he couldn't do much. His PT had told me in September that he was functioning at L1, but I would be surprised if he was doing even that well by mid November. He rarely moved his legs at all. They mostly just were there, still.  If they moved, I would get excited. It was a rare event. He also was losing some strength through his torso. He slumped in the highchair and couldn't hold himself up in the Bumbo very well. I had to put extra padding in his booster seat for when he played on the tray. When I would hold him, he'd snuggle into me, which I thought was sweet. But, now I realize it's because he wasn't able to hold himself up. Bittersweet.

Where is he now? Well. Realistically, probably still around L1/L2. But, so much stronger. He holds himself up beautifully. He has come further in the past 3 weeks toward sitting independently than he was even in the summer. It's so close. Maybe it'll be his birthday present to himself. :)  He moves his legs a lot, I've mentioned that previously. He is just always moving them. They move from the hip, if you can imagine that? He tucks them up when he's on his back. When he's on his tummy, you can see them starting to pull up under him a bit. He uses them to push himself over, which he didn't before - previously it was all upper body and arching his back. A bit more strength there and he'll be able to flip from back to front. He hasn't shown quad functioning to his PT or my mom yet (I have no clue), but he has medial hamstrings (still, no clue). I can feel things working in his upper legs. If I hold his legs down straight when he's lying on his back, I can feel resistance.  When I push against his feet, I feel resistance. I have so much hope for the next few weeks and months. I'm so anxious for more.

We have a lot more help lined up for the new year. Just before Christmas, we met with the PT from our SB clinic and she is setting up regular PT for him, in addition to his visits with his Parent Infant Therapist (who is an OT).  They'll come out to our house, which is wonderful.  He also has a post-op appointment with neurosurgery next week and clinic with the developmental paediatrician on the 10th. I have to remember to call and book his one year check up with his paediatrician. In February, he will see ortho for some baseline assessments, and then in early spring we start rounds all over again with neuro, uro, and dev paed. That's also when he'll go for the follow up MRI to show what surgery has done.

He was supposed to be measured for a standing frame in late November, but surgery has postponed that. I'm excited to get him standing. I'm trying very hard to look past the accessories that are coming and just focus on where it's going to take him.

 I think that's it! Now, I have a birthday party to start planning, don't I? I can't believe my baby is almost one year old. It's so silly, I swear I wasn't this emotional when the girls turned one. Maybe it's because he's (probably, likely, maybe??) my last baby. Oh, my sweet little boy.
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