Showing posts with label Christmas. Show all posts
Showing posts with label Christmas. 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/

Monday, December 3, 2012

Christmas Miracle

Almost as exciting as finding out that we're all healthy and that Kingsley is cruising into the world of underoo's was the discovery that this is the year I was able to get *drumroll* ...really good Christmas pictures!! YAY!!
All of my favourite photographers popped up with mini-sessions for Christmas when I was overwhelmed with Kingsley-health-drama or were for days I wasn't available, so I was royally bummed thinking I had missed our shot when like a star in the sky my friend Laura announced that she was going to do Christmas mini sessions and we could have a spot! I have been stalking Laura's photography skills for years on her blog, so I was just a wee bit excited when she decided to go pro. The day of our pictures all of the stars aligned in our favour: no one was sick, no one was overtired, everyone had two eyes that were working together, no one was rapidly losing functioning of their body, it wasn't too hot, wasn't too cold, outfits coordinated and fit and were still clean at the time of pictures... you can't ask for more than that. Oh, except maybe for a great photographer, which we also had.


Ugh, so sweet.

Wednesday, December 28, 2011

Whole Lotta Christmas Going On

I know Christmas is generally a busy time for everyone, but for us, this year was/is exceptionally insane. We have been going nonstop for about two weeks now. It started on the 15th with Kingsley's MRI and my aunts passing, which of course meant family time as my relatives came to town for the visitations and funeral. The funeral blended into our first Christmas when my brother and sister-in-law were home. The next day we hosted Jeff's extended family. Then we got our Christmas miracle and had our second Christmas with my sisters family. A triple date to see Stuart McLean was next and both girls had their Christmas concerts and last days of school that week as well. Then another Christmas party and we had Christmas Eve and of course the big day itself. Boxing Day was lower key, but was followed by early birthday parties for Kingsley, my sister and my niece, which rounds us out with today when the girls went to the theatre with Jeff's mom and I did a little too much online shopping with all my free time (oops). We have two more parties this week and 5 playdates to arrange for next week while everyone is off. No biggie. ;)

Fortunately (for me) my sister being home means that I got to have someone with a really awesome camera take all the pictures! There are so many cute ones, I cannot possibly post them all, but here's a glimpse at our awesomely insane Christmas 2011.

day one of the insanity - waiting for the MRI with Daddy

my brother and sister-in-law gave King this ridiculously cute hat. he loves it and wears it all the time.

put my girls and my sisters girls in a room together and what do they do? 
Jillian Michaels workouts. 
for real. 
even Kingsley was entertained.

pretty much sums up my thoughts on that first week.
(can you see his scar? people have noticed it a lot more with his recent haircut)

hey! it's me! still feeding Kingsley. sigh.

tracking Santa's progress on Norad. 

could hardly handle the cuteness on Christmas Eve. 

it is really really really really really hard to get a good picture of all 5 kids at once.

time for bed! 
um. yeah, those are the same pj's as last year. they still fit! if it ain't broke...

Christmas for 11 = a very full tree

one of my favourite gifts for Kingsley.

wowing my sister and brother-in-law with his wheeling abilities. I can't count the number of times people watched him with amazement as he rolled around over the past few weeks.

"So many girls. So much giggling. So much squealing."

Phew! OK, I'm done. I have a lot more exciting news, but that's another post! ;)





Wednesday, December 21, 2011

Christmas Miracle

Kingsley is fine, just fine.

We saw his neurosurgeon today. She said his syrinx is still there, still significant, but stable. She asked a whole bunch of questions about what we've been seeing, what Kingsley has been doing, what the concerns are, what changes he's had. She believes they are because he is doing so much more, using so many more muscles in different ways and so there are some side effects - his hamstring is tight because he's realized he can bend that knee to move around and so bends it (he doesn't have the quad muscles to stretch it straight again). The increased twitching is enervation and conscious movement where before it was passive. He's just doing well.

One small shadow: his Chiari area is a bit tight. She asked about his eating and if he chokes and whatnot. He isn't showing any symptoms that concern her, so no surgery now. She is not keen to jump in and open it up more without a really good reason, as doing so could cause more problems so there's no point in putting that risk out there without a very good reason. The same with putting a shunt in his spine to drain the syrinx - there are no guarantees that it would help the situation and no guarantees that it wouldn't make things worse. So, while everything is stable, no surgery. If he has significant changes, we'll have to look into those things.

More good news! His brain is perfectly wonderful. His shunt is working perfectly. There is nothing there that would be causing language problems, as far as she could see, so the delay is just a delay that he will work through, as far as anyone can tell.

This is all pretty much beyond what I could've hoped for. I was imagining terrible things and not a single one of them came true. It's like Christmas morning, his birth day and winning the lottery all in one.

Uploaded from the Photobucket iPhone App

This afternoon, my sister came home to celebrate with us. Really, they came home for Christmas, but this was a pretty good second reason. ;) Christmas can officially begin again. All is well.

Friday, December 16, 2011

The Cheer has Left the Building

We have had a couple of really rocky days here.

Last Thursday was Kingsley's MRI. The morning began as usual until I got a call from my mom telling me that my aunt had passed away in the night. She had had health problems, but this was unexpected nonetheless. It was a heart attack that was the conclusion to a number of very hard years for her. I am so sad to lose the wonderful woman that she was. I know that she's at peace now, but I'm just so sad.

Kingsley's appointment was supposed to be at noon. The poor guy had not eaten since 6:30 the night before and was doing so incredibly good about it when we checked in at 11:30. We were told that they were behind by about 30 minutes. Thirty turned into 60, then 90, then 2 hours. He finally went in just after 2:30. It took him longer to fall asleep this time, which was horrible. I just held him while they held the mask on his face and he cried and cried. I hate that part so  much, but I cannot imagine him going through it without me there.

I have heard mom's say before that they feel badly complaining about how scared they were when their kids went in for tonsil removals or other routine procedures, because compared to brain surgery they are not that serious. I'm telling you though, it doesn't matter what the procedure. Kingsley was put under a general anesthetic, he had an IV and was intubated for his MRI. That's all and I was about as terrified for this as I was for his two brain surgeries. Trusting people to do things to your child is a very scary thing. With my heart in my throat, I waited the long hour and a half until he came out.

They rolled him out and I could just not believe how big and brave he looked, lying there on the bed with his head on a pillow like a big kid. They said he didn't cry or even whimper in recovery. So proud of that guy. We took him home and he was back to himself within the hour.

I had begged them to send us an email as soon as they saw the scans, no matter the results. I needed to know if I could relax or if I should cancel Christmas and start arranging childcare. I did get an email the next day and the answer was somewhere in between. The syrinx is still there, that nasty devil. I did not know that it was possible to hate a part of my son so deeply, but I hate that syrinx with all my being. I want it gone from our lives or at least made insignificant. Instead, it haunts us. It may or may not be causing these problems. It may or may not require more surgery. It's not urgent, but it's not good.

We have our follow up appointment first thing tomorrow morning and then King's neurosurgeon will assess him and let us know her thoughts about surgery in the new year.

Tuesday, December 13, 2011

Holiday Happies

The big unknown is bringing me down and putting a damper on my Christmas cheer! Bah humbug to that, so I am trying to make another conscious effort to seek out the Holiday joy in all the things that make me get that warm, fuzzy Christmas glow. Here is my list of things that bring on the Holiday Happies:

1. Peppermint
2. Shortbread
3. A Christmas Story
4. Chocolate mint Bailey's in hot chocolate
5. Candles
6. People who complain about the people who complain about the snow
7. Boots
8. Hot chocolate
9. Elf
10. Have Yourself a Merry Little Christmas sung by Judy Garland
11. Gingerbread houses decorated by kids
12. Miracle on 34th Street
13. Scarves
14. Chubby pink cheeks when kids come in from playing outside
15. The way Kingsley's ears perk up whenever 'the newborn King' is mentioned in a Christmas song and the way he looks around to see if anyone else noticed that it's yet another song all about him. Or so he thinks. ;) (this one is his favourite)
16. Christmas cups at Starbucks
17. Christmas pictures, even when they're atrocious

18. Eggnog
19. Love Actually (the beginning and the end at the airport gets me every.single.time.)
20. The nights when it's snowing and the whole sky looks pink and glows with Christmas lights and every sound is muffled by the snow
21. Garland with red bows and white lights
22. Gingerbread lattes
23. New toys
24. Christmas sweaters, especially on people who don't realize that they're funny and even more especially when paired with earrings and/or broaches that light up
25. Classic Christmas commercials that still make me laugh years later
26. Christmas traditions
27. Sarah McLaughlin's Wintersong CD
Wintersong
28. Presents you weren't expecting
29. Matching Christmas outfits

30. Advent masses the whole month leading up to Christmas
31. Charlie Brown Christmas
32. Giving someone the Best Gift Ever
33. Having family fly really far (*cough* via Cancun) to be home for Christmas
34. Online shopping. Honestly, how did parents shop before it was invented?? I'm exhausted just imagining
35. Christmas crafts
36. Family

OK, that's all I've got right now. Go find your own joy. :)

Wednesday, December 7, 2011

How Much Can I Squeeze into One Post??

Well, life doesn't stand still just because you're waiting for an MRI to happen and tell you whether or not your little corner of the world is going to get hit with a bag of coal for Christmas. And while life has continued, we've been dipping our toes in Christmas fun!

For starters, we got our Christmas pictures back. In case you haven't noticed, I do like pictures of the kids complete with coordinating outfits and all that stuff they will one day hate me for. This year, I could only laugh. Their outfits are gorgeous, if I do say so myself. However. Kingsley was in the midst of a cold when photo day arrived. He woke up with dried snot all over his face (I know, you're wondering how my little rockstar could be anything but gorgeous, right? ;)) which left dry red patches everywhere. Cordelia was also grouchy and tired. Rachel was my usual princess. Add those three elements together and you get this:


Yeah, I don't want to spoil it for you if you are on my Christmas card list, but that's what you've got coming to you.


We put up the Christmas decorations, which sparked Rachel's annual roll playing of the birth of Jesus. She's been doing this the last three years. It has improved. The first year she wore an ice cream tub on her head as the halo and was usually naked except for a blanket around her waist. She's clearly taken a page from Linus's book with the blanket and the tie. ;) We all get to play parts in her story. Cordelia is lucky if she gets the roll of Angel (think: Gladys Herdman). Kingsley is usually a barnyard animal of some kind. I think the bunny there is favoured as Joseph. Nudie Baby (that creepy naked baby in Rachel's arms) is always Jesus. My favourite part is when she waddles around with Nudie Baby under her dress looking for a place to stay.

I was nervous about how the tree would go with Kingsley on wheels this year. So far, he has nothing but love. He wheels right up to it and stares in awe. Loves to delicately touch the ornaments and basically try to live inside the tree. I know the feeling, I used to love lying under the tree when I was a kid. It's so pretty. Even when it looks like Christmas threw up on it.


We went to a family Christmas party and met Santa. Like last year, Kingsley and Cordelia wanted no part of it. Also like last year, Rachel snuggled in and would've happily sat there chatting with him all day if it were allowed. Kingsley amazed everyone with his wheeling skills. He zipped in and out of everywhere! I love my little mobile man.



He looks like such a big kid here, eating pizza with his sisters like it's no big thing. 

He was enthralled with markers. Has no interest at home, but here they were the Best Thing Ever. Isn't that always the way?

I also had the very cool opportunity to participate in an online cookie exchange via a guest blog! I'm all kinds of famous now. ;)  Have a look: http://maijasmommymoments.com/cookie-exchange-sugar-cookies-fit-for-a-king/ Maija and I have known each other for about half our lives (*choke*), since way back in the day when she dreamed of being a writer and I dreamed of stealing her answers on Sir Gawain and the Green Knight. She still is an amazing writer, as you'll see if you snoop around her blog a bit. 

Speaking of famous, Kingsley and Cordelia have once again decided that showing off on websites and on letterheads is a bit too run-of-the-mill for them. So, now they are in a commercial spot for a fundraiser for our centre. 

video

I think that about sums up the excitement for right now. In business news, Kingsley's having some wonky urological things happening again, but his head banging stopped as soon as his pesky molar popped through.  We even had a few days where he was babbling up a storm and all those lost consonants were back. Constantly keeping us on our toes, this one. Four more days, then we'll see. 

Wednesday, November 30, 2011

All I Want for Christmas...

My two nieces and my sister watched Never Say Never, the Justin Bieber movie. And when I say 'watched' I mean they had it on Netflix and watched it about a dozen times in about as many days. And when I say 'a dozen' I really mean three. They became big Bieber fans. So, when I was at Costco a couple weeks ago I was thinking of them and I grabbed Justin's new Christmas CD with the intention of listening to it a few times and maybe ripping it for them passing it on to them. However, it turns out my nieces aren't the only ones who love "Justin Beaver" because all three of my children have clung to this CD like it's the best music in the world and they insist on listening to it all. day. long. Truthfully, I don't mind. I love Christmas music and if you haven't heard the CD it has a remix of Mariah Carey's All I Want for Christmas which is one of my favourites.

Over the last couple of weeks while this CD has been on repeat, the words of all of his songs have blurred together and played in my head even when it's not on. There's one message that comes up over and over in so many of the songs: All I want for Christmas is you. Tell Santa I'm good this year, my present is standing right here. If you're the only thing I ever get for Christmas then everything I've wished for has come true. I realize Biebs is probably singing about a girl, but when I hear these words, I look at the kids and I think: YES.

I have been walking around the house, just savouring the drawn out Holiday buildup. The lights are up outside, Buddy the Elf has returned, the mail has gotten really exciting, we're going to put the tree up this weekend, lists are being made and checked twice, pictures are done... we're in the Christmas spirit and there's this feeling of just soaking it in and enjoying it all. A true appreciation that we are so incredibly lucky to all be home, to all be healthy, to all be together.

When I was thinking last week about Kingsley being in the hospital a year ago, I remember the rush to do things in the week leading up to his surgery. I remember doing my online shopping from beside his hospital bed. I remember the heavy reality that with one sudden fever, we could be spending our Holiday season in the hospital instead of at home. Getting released on December 2 was one of the best Christmas presents ever.

And the year before that with the sudden scare and hospital stay mid-December before he was born.

We just don't have a lot of luck with this month. Kind of like September.

Which is why I have one wish for Christmas. Just one.

I want Kingsley to be home. 


Because what I didn't want is for his PT to have concerns about his legs. And I didn't want the concerns of September to be brought up again. I didn't want to see their faces when I mentioned some things I had noticed. I didn't want to see the look on my moms face when I told her the concerns that people are mentioning and see that she has the same concerns.

I don't want to hear back from the neurosurgeon and I don't want to know what the inevitable MRI is going to show. I want to continue appreciating that we are all home together and not subconsciously start planning how we are going to get through this month if we get bad news and have to be split up.

It could be nothing. It could all just be explained by... something else.

Or these changes could all be related.

I think we might need a Christmas miracle on this one.


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