Sunday, August 25, 2013

Goodbye, Sweet Birdy

Some of you may remember a post I wrote nearly a year ago now about meeting a mother who was expecting a little baby girl. This sweet girl was going to be born with only half of her heart. The family was facing surgeries, hospital stays, and serious disruption in the lives of their other four children. Her story touched me so deeply, as I know it did for those of you who started following Ava's story and their family's blog.

Ten days ago, Ava passed away. She was eight months old, waiting for a heart that never came. She was so deeply loved, even by those of us who had never even met her.

It seems cliche to say that her mother inspires me, but she does. Lisa has posted throughout Ava's journey with such grace and conviction. It has not been easy and I don't imagine that will change anytime soon. Keep this family in your thoughts and prayers.


Thursday, August 22, 2013

Autumn is Coming...

Autumn sucks for Kingsley. 


We discovered the syrinxes in autumn 2010 (and had a bunch of surgeries).



This year, I figured I'd flash the bird at Autumn and beat it at it's own game: I planned a surgery for Kinger. So there! We already know that autumn is going to suck and we know why. I was all: IN YOUR FACE! right up until I hung up the phone on Tuesday with a surgery date and pre-op appointment scheduled. Then I felt like throwing up. 

His hamstring and heel-cord releases (are these even the real surgery names? I may be making them up) are scheduled for October 15. King and I will be meeting with the ortho surgeon two weeks before that to finalize the details. His PT wants her to consider doing some work on his ballerina foot as well to get it less ballerina-pointy and more flat footed. Either way, he'll be in double leg casts for four to six weeks afterward. 

I haven't really figured out how I'm going to tell Kingsley all of this. Right now, I discuss it in front of him, but not with him. He doesn't quite grasp the concept of time and thinks that anything I mention in the future is imminent - for example, thanks to Costco having Christmas wrap out already, Kingsley thinks Santa is coming any day. I don't want him to live in a state of constant panic at the thought that any car ride is going to end at the hospital with him having surgery. It's very different from the last four times when he was an infant. On the other hand, I do need to talk to him about it eventually. It would be rather cruel to take an unsuspecting child into the hospital and have him wake up in double leg casts. SURPRISE! 

One other itty-bitty thing causing me a bit of anxiety is that he has an MRI booked for next Tuesday. It's supposed to be just a routine see-how-things-are kind of MRI. Pleasepleaseplease pretty please with a cherry on top, can this just be a routine MRI and not some fake-out where we discover something we don't want to discover??  I did tell King about the MRI next week and the mask that is going to help him fall asleep. He was not pleased. Apparently, he remembers the Mask of Doom from last year and freaked out a bit when we were talking about it. Eek, poor guy. :/

we had the pre-admit appointment today. I think he handled it pretty well.


Tuesday, August 20, 2013

The Big WHY

I debated posting about this before I had a conclusion to my story, but I am at the point now where I am not confident that the conclusion will ever come. And maybe that's just the way it's going to be or supposed to be, I don't know. 

A few weeks ago, on a Friday night, there was a knock on our door as I was putting the kids to bed. Jeff answered it and I just got to the door in time to see him signing something and accepting a big, thick envelope. 

Jeff's father was adopted as a child. Just before he passed away five years ago, he and his wife had been trying to trace his roots and find out about his biological parents. He had been able to find out a little bit, but his adoption records were sealed, his adoptive parents had both died, and so he could only go so far. Four years ago, the adoption records were unsealed. Jeff, his oldest child, asked for the adoption records of his father. Four years later, on a random Friday evening, they arrived. 

Jeff pulled out the file and we both chuckled at the introductory letter warning that the recipient should have supports in place as the contents might be upsetting or cause unexpected emotions. That night and the next day, Jeff read through the 100+ page file. Saturday morning, he casually called me over to read a line on one of the pages. 

I was not expecting to read what I read. 

In her own handwriting, Jeff's paternal grandmother wrote about her siblings. She had two, both married, the younger was in poor health and had trouble with her spine. 

Spine. 

Trouble with her SPINE. 

I must have read that line a hundred times and then devoured the whole report, anxious for any more information on this great aunt of Jeff's who had spine trouble, but that is absolutely all that it said. 

For forty-seven months I have been waiting for an answer. I have been swallowing the guilt, wondering what I could have done to make that itty-bitty neural tube not close. I know there's nothing I did intentionally, I did what I could to prevent it, this isn't 'my fault'. But it happened and without any other explanation, the guilt falls to me. 

But with those four little words, I could be absolved. 

Spina bifida can be genetic. There are many types of SB, one called occulta, which wouldn't have required surgery at birth or even have been known without the presence of problems. If Jeff's great aunt had some form of SB, then there is our answer. There's the WHY that we have been agonizing over for years. There is an answer for my daughters, for my relatives, for Jeff's relatives. 

IF is the big fat IF though. Maybe she just had a bad back and coincidentally it was called trouble with the spine. Maybe maybe maybe, if if if. 

Jeff's step-mom gave me contact information for the bit of distant relatives they had been able to get in contact with all those years back and I sent a message to a woman I think is Jeff's second-cousin. I haven't heard back. To say that I am anxiously awaiting a reply would be an understatement. In the meantime, I speculate. I imagine what it would be like to have the answer that I had long ago given up hope of ever getting. I imagine getting a blank wall and no answers, always wondering how close we are. Who knows. 


Aside from that, there was one other awesome little tidbit in the adoption records. Jeff's grandmother had red hair. So, the other big mystery in our lives has now been solved: we know where Cordelia's hair came from! 



Monday, July 29, 2013

Four Eyes

Remember last year when Kingsley went cross-eyed and scared the pants off of us thinking there was something major going on and it turned out to be a random thing that corrected itself?


We went to the eye doctor today and turns out he's still doing great, his vision is great, his eyes are healthy, everything is fine still. Same with the girls, 3 kids with 6 healthy, perfectly working eyes. Unfortunate, kind of, since they are so ridiculously cute in glasses...


I wasn't so lucky! It's funny how a lot of people don't know that I wear contacts, considering how bad my eyesight is (-7.00 and -8.00 for real). Sadly, I rarely ever wear glasses. The ones I have are from before I even got pregnant with Rachel, so, I was a bit overdue for a new pair. As always, I have big ambitions to actually wear my new glasses in public. We'll see. ;)

Sunday, July 28, 2013

The Cuz's

July has been a super busy month, due mostly to my sister visiting with her crew. They live way across the country, so we don't get to see them that often. Fortunately, when she does come, I steal her camera card and take all of her pictures so that I suddenly seem way more adept at photography than I really am.

 at the drive-in, while King was trying to escape and roam free in the weeds

 don't you sometimes wish you could still sit at the kid table? 

 I love how this shows their growth with their legs

 movie night!

this picture just makes me laugh, from cross-eyed Rachel to Kamille's gansta face

summer is not complete without a lemonade stand 

I love how these 5 get along like they're always together, they just gel. Something about their ages this visit was just perfect - they never fought. Can't get better than cousin besties. 

Saturday, July 27, 2013

Going Nowhere Fast

*** This is a poop post. The vast majority of you will want to just skip on over it. It's okay. Come back soon, I'll have something less gross to talk about, like swimming or my nieces visiting or anything that isn't brown. For those of you walking this walk, carry on. ;)

seriously, mom, this is so gross

So, the ongoing frustration continues. After being referred to the new GI doctor, I had high hopes about finally coming up with some great plan to deal with bowel business. I spoke with his nurse practitioner who said she wanted us to do a full clean out before the next step. 

Let me tell you, we've done clean outs before, but never to this degree. I wanted to vom on an hourly basis. Once again, both King and I were traumatized by poop. I will spare you the gory details, but Rachel and Cordelia are more than willing to describe the puddles. 

Puddles, people. 

I now have a toothbrush reserved specifically for the task of scrubbing itty bitty crevices in King's wheelchair. 

Anyway, once that was done, we found out the answers we wanted (there are no little caves or cavities made in his colon anywhere created from constipation and holding stale poop for endless amounts of time. yay.) and Kinger was all cleaned out. And then some. I called up the nurse, eager to hear what the next steps would be. 

Give him fibre so he's not constipated. (he's not constipated)
Give him other fibre so his poop is solid (his poop is solid)
[insert review of King's diagnosis and what neurogenic bowel means for him. for the second time since apparently it wasn't written down the first time. reminder that we want surgery. in the meantime, we want something else to do so he's not going all day, every day]
Try to train his bowel to go at the same time every day (November. Every night since November)
Have him sit on the potty multiple times a day (haaaahahahahahahaha!!! 30 min/day, multiple times a day?? good one)
OK, have him sit on the potty in the morning before breakfast, instead of at night (sigh. really? ok, we'll try)
Ummm.... (ummm??)
Maybe when his lower ab muscles are stronger he'll learn to push. (*crickets* uh... yeah and when his leg muscles are stronger he'll learn to walk, right? kthxbai)

And that's where I hung up and put my head down on my kitchen counter and King rolled up and asked me if I was sad. Oh, buddy. 

I don't know where we go with this. No one wants to talk about enema's, no one has any other suggestions. No one other than his urologist and I seem at all concerned that the train doesn't stop. I'm frustrated. 

A couple of interesting things DID come out of this experience though. The first was that just before we did the clean out, King did get constipated. Nothing changed - his diet, his liquid intake, his liquid output, his health, his activity level, his medicine - other than this. It's just one of those odd things that happened, but it's never happened before without some ominous reason.

The other was that Kingsley is acutely aware of every time he poops, toots or has a stomach gurgle. This is also new. He gets a look of absolute panic whenever it happens also, which makes me sad. I'm glad that he's aware of it, so that he can be changed quickly. I am not glad that he is so bothered by it. 

 are you STILL talking about this??

That's it, I'm all done. We have been having a great summer other than this nasty bit. Hopefully, it'll be our only blip! 



Wednesday, July 24, 2013

#Pinterest #Win

Way back last year sometime when I first fell in love with the insanity that is Pinterest, I stumbled upon an upcycled crib that got me giddy. Let me just explain why this is beyond awesome.

First, drop-side cribs that are pretty standard are now banned in Canada. If you have one, you can't sell it and you aren't supposed to use it unless the manufacturers sent you the kit that makes it no longer a drop-side crib, just a giant jail cell with four nailed-in walls. This recall/ban happened when King was a baby sometime and did not phase me in the slightest. For starters - our crib broke the night I put it together when I was pregnant with Rachel (Picture this:  there is a hockey game on TV. A 7-month-humongously pregnant woman is putting together a crib. She asks her heavily distracted husband to just hold the board while she screws in the four screws. He agrees. She screws in one side. Someone scores. He lets go. The board splits. The woman cries. Then the woman calls her dad. He glues it back together. It holds three children because Dad is awesome) so, there was no expectation that we would be able to sell this crib either way. However, there's also no chance of hanging on to the crib for future generations since it's already obsolete. I was just thrilled to have ANYTHING to do with this crib other than the dump.


Another reason this crib was so awesome was that it was turned into a desk that could be set at basically any level. We have such trouble finding tables and desks that are the right height for King. Adult-sized are too high, child-sized are too low for his wheels. At one point, we had even considered having a table custom made for him, just to have one. Colouring, playdough, trains, cars, puzzles, snacks, tea parties - there are so many reasons a child needs a table that they can access. Kinger has become an expert at siding up next to things, but most of the time he just gets frustrated and gives up instead.

Sooo... for the last few weeks my sister has been visiting from BC and her husband came along. The man (thankfully) is incapable of relaxing and vacationing. Instead, he scrubbed windows, cleaned out window wells, mowed the lawn, fixed our gate, and then did the grunt work on this upcycle. The original upcycle had some extra board put over and edging or something... mine is not so fancy. Kevin sanded, primed, and then painted the original board with chalkboard paint. It looks awesome. Today, I put the pieces together and held my breath. There are three levels the board could be at, or there was the option of just breaking out some nails and setting it wherever I want. By some total miracle, the highest level was perfect!

PERFECT height in his stander! 

I don't think this could be a more perfect height for his wheelchair

the girls got super excited when they saw the new desk 

the perfect, accessible tabletop for trains! 

This may be my favourite Pin ever. I am so glad that I held on to it and made this happen. So, parents, hang on to those cribs and give your kids a free desk. Brilliant! 

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