Thursday, September 29, 2011

Oh, September, How I Hate Thee...

I had four days left in the month, just four short days and we would've been free from the grips of the Month That Hates Us. Unfortunately, I noticed some strange things with Kingsley...

OK, I'm getting into stuff you may not want to read about. If pee-pee talk is gross, skip ahead to the picture of Kingsley while everyone else reads on ;)

Last warning.

OK then...

So, Kingsley started wetting his diapers. A combination of meds and bladder things means that Kingsley doesn't often wet his diapers and if he does, it's not that much. But three days in the past two weeks, Kingsley has SOAKED his diaper at night and actually even leaked. Daytime diapers were also noticeably wet. So strange. He has even peed on me three times which he's done a total of twice in his entire life before this.

Naturally, I emailed one of his nurses thinking I'd just give them a heads up, figuring maybe he just needed a med adjustment or something. Instead she asked if he could have a UTI or said maybe this was a sign of a re-tethered cord.

Wahn-wahn waaaaaaahn... As Rachel would say. Obviously, not what I wanted to hear.

Bowel and bladder control are at the bottom of the spinal cord, so they are often the first to change when something is happening. If his cord is retethered and is causing problems, he'd need to have another surgery like the one he had in February.

(the Elmo-thing sort of caught on. ;) this smile is brought to you by the letter E and the number 1... and the fact that Elmo's World had just come on TV the moment before I took it)

We could still be fine. I've taken in a sample to be tested for an UTI and I'm waiting and hoping it's just something minor like that. Or maybe it'll just go back to normal and be a random blip. Or maybe he really does need a medication alteration. Or maybe the September curse is hitting us again and this is the start of another very stressful autumn. Or maybe he'll restore all functioning starting down here at the bottom and working up?!?! Oh, come on, I'm allowed to still believe in miracles. ;)

While I wait for results and try to figure out what comes next, we are doing some fun stuff around here! Kingsley is blowing my mind with some of the awesome things he's been doing lately. Have I mentioned that he's a rockstar? Yeah, he is.

Tuesday, September 27, 2011

Cottage


One of the best things about living in southwestern Ontario is that we are smack in the middle of a triangle with lakes on the left side and the bottom. 30-90 minutes in one of those directions and you hit a beach. Lots of beaches. Gorgeous beaches. With beaches come cottage towns.

I think at some point in most adults lives (in these parts anyway), there will come a time where you sit down and contemplate: can I buy a cottage? Often 'cottage' is substituted with 'boat' or 'trailer' or 'camper' because those are equally awesome summer accessories, but for us it's always been cottage. Jeff and I have talked about it and decided probably not. But, growing up we rented a cottage for a week or two every summer and that seems to be the tradition we're going to continue with our family. 


This is one of those things that upset me quite a bit when we got Kingsley's diagnosis. This dream of summer time spent at the beach seemed to be crushed. How could a kid on wheels hang out at a cottage??  Enter: blogs. Seriously, other bloggers have saved our summer. If THEY can all take their kids to the beach, what am I all worked up about? ;)


Last summer, we rented a cottage with my sister and her kids. It was your typical tiny, shack-ish cottage right smack in the best location ever. Kinger was only 6 months old at the time, so not any big difference between having any 6 month old baby hanging out with you at the beach. This summer, we had to think a little bit harder to find the right place, but WOW did we ever find it!


Our cottage was not actually a cottage. It was a 5 bedroom bungalow just a short drive from the beach. It came equipped with everything you could possibly want in a cottage vacation: fire pit, trampoline, hot tub, volleyball net, horse shoes, bikes, toys, TV/DVD, on and on... Completely unreal. What really interested me was the open concept, lack of carpets and the long, level driveway. It wasn't perfect - there was a hill in the backyard, the entry ways all had stairs, it was a bit of a walk from the van to the beach, and the bedroom/bathroom doors were all standard width, but it was as close to perfect as we could've wanted.


We had a fantastic vacation at the beach. What meant the most to me was the realization that concern over what Kingsley can/not do did not have to interfere with what the girls would want to do. Some things, like the sand dunes (a huge wall of sand that you climb), Kingsley would not likely ever be able to enjoy, so we took the girls during naptime. Likewise, the playground nearby was not accessible, so we hit that during a naptime. But the beach, the restaurants, the market, walks in the neighbourhood, and campfires were all a go for Kinger with some help from us. All three of them had the opportunity to experience the best of cottage life, which is just the way it should be.


Family memories - check!


(OK, I know, I know. It's the end of September and yes, we did go to the cottage at the start of August, but better late than never! ;))

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.


Thursday, September 15, 2011

The MyOn

Kingsley is doing awesome with his temporary wheels. His steering needs a little work and he's easily distracted by ... everything, but he appears to be enjoying himself once he gets going.





I brought him to the mall today and he experimented for awhile in a few stores. His favourite thing to do seemed to be rolling into clothing racks.

I guess he looks older on his wheels because people kept talking to him and expecting responses. I realize he is 20 months old now, but no, he cannot tell you his name, how old he is, how his day is going or how much he likes hanging out with his mommy. ;) He will smile at you and get all coy though.

Tuesday, September 13, 2011

Equipment

I'm so behind. Kingsley has had a cool summer where we've made some big leaps forward with equipment.

First, a boring one. We realized that since his detethering surgery when he regained the ability to bend his right leg (but not straighten it back out), he pretty much prefers to have it bent in. It was getting tight, so we got something called gaitors (which could be spelled wrong, I have no clue - gators? gaiders?). They're basically wraps around his legs that prevent him from bending his knees. He wears them to bed every other night. He has learnt to do all of his wiggling/rolling at night in his crib, so we didn't want to hinder that too much by having him wear them every night. They're working really well and his legs are able to stretch out nice and straight much easier again.


A few weeks ago, we went and had a consult with Seating and Mobility at the centre and ended up bringing home a wheelchair to try for a week.  He did not love it all that much. He wasn't overly motivated to move. He was able to quite easily, he just didn't. From there, I looked online at a few different wheels and tomorrow we are going to the dealer (rep? the guy that sells this stuff) to try a couple out. I kind of have my mind already made up on the Zippie Zone, but I'm still interested in seeing the other options.

We also had a consult for mobile/dynamic standers (imagine a wheelchair where you stand up or wheels on his standing frame)! We tested a Rifton and a Rabbit. Kingsley was a ROCKSTAR! He was so geared up just watching the rep set them up. He kept giggling and trying to lunge out of my arms toward them. When we held him up to strap him in the Rabbit, he immediately reached for the wheels and started to push. Luckily, the brakes were on, but once we took them off, he was gone. Odd, how much more interested he was in this than the trial wheelchair. He loves being in his stander, so maybe it's something about the positioning or height. Either way, we're probably going to buy a Rifton. His PT was going to see if she could track down a different sized one from another client so King could test the exact one we'd buy, but I'm ready to buy it either way.


We're also having some trouble with one of his AFO's. He gets random red spots on the front of his left foot/ankle area. We've gone in to see the Splinting team and they were confused as well. It's not a sore per say, it isn't raised or open or anything, just a red spot that takes days to go away. It's on his ballerina foot, so we suspect it has something to do with it. I wondered if it was heat related, so we'll see if it stops happening now that the weather is shifting.

Lastly, you may not have noticed, but his Bumbobile got an upgrade. We added a foot plate and a thing on the back so I can slide a stick in to push him with. It's genius.


This little guy is getting set up. :)

The Green Monster

I have been doing a lot of thinking over the last month, a lot of reflection on certain behaviours I find myself doing and wondering why I'm acting so oddly. Some things are pretty obvious, some I'm embarrassed to admit. It turns out, I have a big bubble that I live in over here. It's part denial, part survival. I remember talking to a social worker about this back when Kingsley was first born and she said it's not that I'm pulling a bag over my head, it's that I'm recognizing that I don't need to put energy into certain things because I'm saving up for bigger things. I will just say she's right. ;)

So... what am I talking about, right?  Well, I'm avoiding things. I'm avoiding pregnant women, birth announcements, baby boys, and little boys in general.  I'm also avoiding one year olds, pretty much across the board. One year olds who have just turned one and are toddling around without a care in the world. One year olds who are pushing two like Kingsley and have struggles like Kingsley and who are now all starting to get up on their feet.  I'm avoiding other kids with SB, my blog world, and any general reminder that the life we have is not perfectly normal.

I don't know why I'm doing it. In 2 days it's the anniversary of our D-Day and I'm so far away from that day, it feels like another life in some ways. Kingsley is doing awesome. I have no worries about him regressing or needing another surgery anytime soon. He's happy, he's healthy, he's moving forward. Great things are happening for him! Tomorrow, we're going for his first wheelchair consult and I'm really, truly excited about it.

I think what it comes down to is that ugly green monster: envy. It jumps out and catches me off guard at the most unexpected times. The way babies stand up and bounce on your lap or the way they stuff food in their mouths like they're starved. The way they babble and talk and toss out words, so effortlessly. The way they race around getting into toys and destroying your house. The way so many of Kingsley's little SB buddies are now up - whether standing or walking on their own or with help - they're up.

I am happy for my friends who keep having boring pregnancies and all kinds of labours and have kids who drive them mad with their endless talking and running, and I am overjoyed for those little ones out there defying the odds and slowly, slowly making their first baby steps. But I also want it for myself, for Kingsley. And since it's just not in the cards, I just can't think about it that much.

So, I don't.

I just avoid situations where I have to think about it. I make up excuses and tell myself how I'm too busy to check in with anyone, too busy for playdates, too busy to catch up on blogs. Instead, I watch Kingsley make his little gains at his own little pace and I celebrate them as if he's meeting every milestone right on track. It's very one-sided of me, I know this. It feels rather selfish. I'll get over it soon enough, but for now, I'll just go back to my bubble where I don't have to think about what Kingsley isn't doing and just focus on what the kids are going to wear for their fall pictures or for Halloween, all the new gear Kingsley is going to be getting in the next few months, playgroups, swimming lessons, and all of the regular, boring life stuff that I love so much.

go away smelly green monster

Friday, September 2, 2011

Just Like Hallmark...

Well, I'm honestly not dwelling on it, but yesterday was two years since I sat in my midwife's office and watched her circle the 1:5 SPINA BIFIDA over and over as she reassured me that it was going to be just fine. Two years since I sat sobbing in my car, scaring poor Jeff when he answered the phone and I could hardly speak the words. Two years since I sat there knowing, as only a mother can, that my little baby was a boy and that this really was going to be happening to us. It's a very real memory for me and I can feel the pain as real as that day, but I don't have the ache anymore like I did then. I know this story has a happy ending, you see.

Anyway, another SB mama passed this on to me a few days ago and I finally got around to watching it which is what made me actually think about yesterday's date and where I was two years ago.  There really is a song for every occasion, isn't there?  I wish all parents who have those anniversary dates have endings like this and like ours. Not all of them do though and that is something that has become more real to me this year.

Grab a tissue first.

http://www.youtube.com/watch?v=DJOSMB0QhFY&feature=share
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