Showing posts with label scars. Show all posts
Showing posts with label scars. Show all posts

Saturday, November 26, 2011

The Big Scar

I do have some exciting things to post about, but before I get to that, I just wanted to post a couple pictures of Kingsley's decompression scar. My last post had a big ugly picture of his scar at a couple weeks post-op. It's dreadful, isn't it? It's my own son, my amazing rockstar and it still gives me the shivers to see that enormous, raw scar down the back of his head and neck.
This was just before getting the stitches removed.

This was just after getting the stitches removed

Fortunately, it looks nothing like that now. I wondered for a long time how it was ever going to heal and become less noticeable or if people would forever be staring at the back of his head. It did! I think the only people that notice it now are the people who cut his hair, but even they have never mentioned it other than to spend a few extra seconds parting and brushing in the back when they think I'm not looking.

So, for those of you who don't often get to see Kingsley's head in real life, here is how it looks now:

It's so amazing what the human body can do, isn't it?

Thursday, November 24, 2011

One Year

One year ago right now, I was in this room

 After putting my baby on a bed and watching him go rolling through these doors

I was holding my breath, heart in my throat, not thinking, not thinking, not thinking about what was happening.

Watching the clock tick on, minute by minute, hour by hour.

Waiting to run and see my baby.

It's strange how much this anniversary has  been on my mind. Although we obviously are not celebrating, it's so fitting that the one year anniversary of Kingsley's decompression surgery is on the American Thanksgiving, because I do not have words to say how thankful I am that one year ago his surgery went the way that it went; that I didn't think on that day about what could have happened, what almost happened, and what would have happened. Those are all the things that I'm able to start thinking about only now and it terrifies me.

It wasn't Kingsley's first surgery and it wasn't his last. There's no guarantee that he won't need another decompression at some point. He'll need to have surgery for his shunt again. Maybe many shunt surgeries. There's a good chance he'll need more detetherings. This is our reality.  Not having those surgeries would mean not having Kingsley, which is something I can barely wrap my head round. And so we go through it.

But right now, today, he doesn't have to. Today, we went swimming and he did amazing. He paddled with his arms, floated on his back by himself, and blew bubbles. Today, he asked for (and received) hug after hug after hug. Today, he had two candy cane cookies for lunch, because he wanted them.  Today, he smiled and played and pulled his sister's hair. Today is one more day that SB takes a backseat to life. We are so grateful for that.

Sunday, January 2, 2011

The Lucky Ones

Too often, I hear people using the phrase: It could be worse. I don't know if it's just the adult world, or the parenting world, or just the parents-of-kids-with-special-needs world, but I feel like I hear it all the time. You know how it goes -  you have a kid throwing up and someone says: "Well, it could be worse! It could be ALL of your kids throwing up!" or you hate your job and someone says: "It could be worse! You could be unemployed!" or, in my world: "It could be worse. SB is manageable. At least it's not xyz diagnosis."

The phrase annoys me. I feel like it diminishes someones pain or frustration. It sounds patronizing. Sometimes, situations are rough and that's okay to acknowledge. As someone sagely once told me: "Just because someone else has a broken leg doesn't mean your sprained ankle doesn't hurt like hell."  Which is exactly right. Just because there are things so much worse than SB, that does not mean that SB doesn't suck.  A lot. As does every other thing I feel like complaining about in any given moment.  ;)

And if I'm being honest, to me the phrase is also a bit painful. As if I can hear other mothers squeezing their own naturally-mobile children tight, thinking about Kingsley and saying it to themselves, just as I have done so often thinking about other special kids I have known. 'Worse' is always relative, isn't it? 

However, today, I have found myself thinking these thoughts with a heavy heart. I look at my three beautiful children. I look at Kingsley's scars. I think: It could be worse. It could be so much worse.  Because, as I have noted previously a scar does not form on the dying. And the very fact that I can go upstairs and hug all three of my children if I want to reminds me that things could indeed be worse. 

There is a new angel in heaven today. A sweet baby girl, who was only with us for ten days. Tonight, she is up there with her grandpa instead of with her parents and her sister and all of the family that loves her so much, despite barely having any time to get to know her. She was born with Trisomy 18, so her story was destined to end before it should have, no matter what anyone did. Somehow, that doesn't make it any less sad. Any less unfair. Any less wrong. Any less devastating for her parents. 

It has made me realize that we are the lucky ones. All of us that have our sweet little children here on earth with us. No matter the challenges we have to face for them, no matter what fights we find ourselves fighting for them, no matter how much heartache we feel on their behalf.  We are the lucky ones. We get to feel that pain, we get to fight that fight, we get to face those challenges. For however long we are blessed to care for our little people, we are so lucky to be able to do that. To know them. To watch them sleep. To kiss their little faces until their sticky hands push us away and they complain that they can't see the TV or that we're making them mess up their painting. We are lucky for whatever moments we have with our children.  

No matter how many scars zigzag across his little body, no matter what level he functions at, no matter how many times he wakes me up at night, I am lucky. I don't ever want to forget that. 

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.

Friday, December 10, 2010


We were told that it might take up to three or four months to really see what sort of a change the big surgery would have with regard to Kingsley's leg functioning.  I imagined a very long winter spent hovering over Kingsley's legs watching every flinch and twitch, praying with every breath that I would see a change.  I feel like that was pretty much how I was in the hospital there, holding his legs with both hands, waiting for any sign of pressure against them.

But since we've been home, the hovering and holding on hasn't been necessary at all. You can SEE the movement. All. Day. Long.  

Each diaper change is getting more and more ridiculous as I find myself sitting there blinded by tears and a huge, dopey grin.  One of the things I remembered was that I used to have to hold Kingsley's legs while cath'ing him so that he wouldn't get them in the way. I don't remember when it happened, but at some point I stopped having to do that. Instead, I was propping the bottle (that I drained the cath into) behind his knee and walking away to get a diaper, a change of clothes, get Cordelia out of trouble or some other thing that needed my attention. The bottle never went anywhere because he just wasn't moving his legs.  Since we've been home from the hospital, he's knocked the bottle over three times and soaked himself. Now I hold the bottle. 

In my head, I've been knocking off the months, working backward. I've been watching like a hawk, trying to remember what I've learnt about what muscles do what action. His trunk is also more solid again, I'm almost certain. That was something that was getting weak in October and November, just before surgery. Definitely, lifting his legs from the hip doing a frog kick sort of thing. That's good, that's what he had in September, I know for sure. The frequency of movement has increased more than I can really explain. He just moves his legs all the time, where before surgery we would only see him move them once or twice a day if we watched closely.  I barely remember seeing him ever move this much.  

Here's where I love this blog and the way things get chronicled because I've been obsessively watching the video in this post:  since September. He wasn't doing this in September. In fact,  I think this was pretty much the last time I got any good movement from him on camera.  I took the video June 2, 2010 and I remember feeling slightly fraud-ish even posting it because he so rarely showed that much movement at all when I posted it; it felt like a misrepresentation of his abilities in early July. Today, when I was changing his diaper just before lunch, he was almost there. He was doing almost those exact movements on the left side and some of them on the right. I just watched in disbelief as he bent his knee and pulled his leg up, over and over. I could have sworn he also straightened his leg back out a couple of times. 

I feel like it's so surreal. I need someone else to see this movement and verify that YES he really is moving his legs again and that there might actually be quads and hams moving and working. It feels too good to be true! To see this so soon is like a miracle. I just can't wrap my head around it. LOL! I feel that way about everything relating to Kingsley lately! If he's come this far in just two weeks, imagine how far he could go. Can you even imagine?

He also got his stitches out on Wednesday, which means he's gone from this:

 to this:
and it actually looks even better than that now. More stuff I can't wrap my head around. I'm amazed at how he heals. It's both shudder-inducing and awe-inspiring to look at his scar right now.

Sunday, December 5, 2010

Kingsley's Decompression with Music

"... and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."
  ~ Little Bee, Chris Cleave

I make videos for everything. This is Kingsley's 9 days in the hospital. One more battle scar.
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