Showing posts with label MRI. Show all posts
Showing posts with label MRI. Show all posts

Friday, May 30, 2014

Hey There, Stranger

WWe are all alive and doing well ;) I'm going to attempt a recap of the past few months without boring you all. 

I guess first was Kingsley's MRI. It went just fine and the results were undramatic. Everything is stable. I have been panicking about Kingsley's scoliosis for the past year or so, I feel like it is getting worse. King's neuro did say that before we do anything with ortho to correct or stall the curve she would like to do a detethering. But right now no one thinks anything needs to be done, so basically chill out, mama. He will have an x-ray in the fall and they'll see how things are then. 

In other medical news, we have made the official, official, official decision to do the MACE and Mitrofanoff. The plan is to do them in February, right after Christmas and birthday excitement  are over, when there will be a lot of time to recover before summer. I'm. So. Nervous. I know it is the right decision for him, I'm so excited for it to be over. 

As May winds down, I'm so aware of the end of the school year coming. While I do love summer, it's dawned on me that come the end of June, Kingsley and I will not be alone anymore. The girls will be off for the summer and then they all go to school in September. My days at home with my baby are dwindling and that makes me sad! I have loved being at home with these kids far more than I ever thought I would. 

So, what have we been up to? Gardening, swimming, reading, and yoga mostly. I am forcing my interests on my children ;) Kingsley has recently gotten two new sets of wheels. Obviously, the kid cannot have enough wheels in his life. The first was a Radio Flyer Cyclone. It isn't made for kids who can't use their legs, but it works for him. Unlike the plasma car (which we also have and he likes), his legs have somewhere to rest without having to strap them on and the seat has a bit more stability. 

He also got a bike! Kingsley has been obsessed with bikes this year. He begs for one. He pleads for one. And like a gift from an angel, today one just showed up! King goes to a play group where there is a fabulous volunteer who has an adult son with SB. He had outgrown the bike, so they've given it to us! To say that Kingsley is in love is just such an understatement. He can't stop talking about it. He has made me promise over and over that he can ride it tomorrow aaa soon as he wakes up. It's such a gift. 

The rest of our days have just been filled with regular life stuff. I am on Instagram @jillbells That seems to have taken the place of my blogging lately. So much lazier. ;) 

Tuesday, April 1, 2014


I feel badly that I posted a mopey post and then did not come back and blog for over a month. No worries, things are a-okay. It ended up being a good reminder for me about what happens to my head when I don't look after myself: after a week of the flu, not eating well, not working out, I could feel those ugly thoughts creeping up. That's about the only time they happen now.

Anyway, a few days after that I was back to normal and we haven't looked back. Everything and nothing have happened since then. I had my birthday, Rachel had her birthday. We had the longest, coldest, snowiest winter in decades. King had an MRI today to check everything over and see if his scoliosis is related to a tethered cord and if something needs to be done there. We've been doing more school planning, which has been great. Basically, we are all just doing really well. 

Who can be grouchy in the springtime sunshine?? 

Wednesday, September 4, 2013

Stable Like a Table

A midst the craziness of the first day of school yesterday for Rachel and Cordelia (grade 2 and SK), Kingsley had his follow up appointment with his neurosurgeon. The MRI showed nothing of interest! Everything was stable - his ventricles, his (potentially tethered but asymptomatic) cord, his (also asymptomatic) Chiari Malformation, and his syrinx which is all the same size, no bigger, no smaller and not causing any drama.


Such. A. Relief.

The girls had great first days of school. They both love their teachers and were excited to see their friends. No tears!

except Kingsley. he cried. smiling for pictures is pure torture before 9am.

Tuesday, August 27, 2013

MRI Number...?

I think today was Kingsley's eighth MRI, but I could be wrong. I've honestly lost track. They're just checking things out, for once. We don't have any obvious concerns, but neuro wanted a follow-up after last years virus, and to check the syrinx, the possible retethered cord, space for the Chiari, etc.

This was the first time I've talked to him about it before hand. The Pre-Admit Clinic gave us a print out of pictures to talk to kids about and give them a visual description of what would be happening. Last night, we chatted about it and I showed him the pictures. He started crying. He said he didn't want the mask, didn't want to go to sleep, didn't want to go to the hospital. I was able to talk him down a bit and let him know that I'd be there and I'd be with him when he went to sleep.

This morning, I opened his door and his first words were: "Be-tuz I don't want to have a nap and I'm scared of the mask!!" Oh, buddy. :(

He did amazing though, truly. He was scared. He cried when the nurse put his bracelets on and kept asking for chocolate pudding. We spent most of the morning snuggling and reading books. When it was time to go in, I carried him and he told me how scared he was again. I laid him down on the gurney and the anesthesiologist was so wonderful, talking to him and trying to keep him calm. When they put the mask on, I reminded him that this was just sleeping medicine and it was going to be okay. He just nodded, held my hand, breathed slowly, and drifted off to sleep.

Crush my heart. Three year-olds should not have to be this brave.

He woke up in a great mood, making the nurses just fall in love with him. We watched Curious George and shared a popsicle until he was allowed to go. While we were there, one of the nurses showed me his hospital file. It was about three inches deep. This kid is going to need his own shelf by the time he turns ten.

We get the results in one week.

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.

Saturday, November 10, 2012


I realize I'm dreadfully overdue for a Halloween report, to the point where no one even cares about Halloween anymore! But, some big things happened on Halloween, so trudge through it.

Firstly, Kingsley rocked his boat. He has been asking at regular intervals to go to a Halloween party and anything remotely resembling a pirate his him growling: "I'm a piwate! AARGGH!!" He was a huge spectacle (like that's new) and everywhere we went on Halloween he was fawned over. I'm telling you, wheelchair costumes are unheard of here, to the point that a lot of people did double and triple takes before they realized that it was actually a wheelchair and not just some insane mom putting a huge box on their child and making them walk around with it.

Halloween morning, King had his follow up with his neurosurgeon. The MRI had shown nothing that would cause the eye issues. Great news! Especially since his eyes have gone back to normal...?? We're all a bit baffled. I have photographic evidence, this crazy eye thing was witnessed by a lot of people, it wasn't in my head. Now it's gone and there was nothing to cause it in his brain. His ventricles were a tad bigger, but she has decided that it's because he is bigger and thus, his brain is also. September (and October) were a bunch of mostly-unrelated, flukes that sum up Kinger. Good enough for me!

Except one little blip where she said that at some point he is going to need another decompression because there isn't a lot of space back there. She said we will wait until he needs it, to watch for the signs. Insert knife directly into my heart and twist. Ouch. I'm not thinking about this one. I will deal with it when I need to.

Anyway, next up was a party at his playgroup, home for a nap, and then we got the girls and were ready for Trick or Treating! It was a dark and stormy night, unfortunately. Ever since Rachel was old enough to go out, we have been going Mall'oweening. This has worked out perfectly since curbs, driveways, walkways, and porches are terrible obstacles when you're a wee one on wheels and our malls are accessibility dreams come true. My charming little pirate cleaned up at the mall, to the point where I felt badly for the other kids ;) He got double candy at pretty much every store, despite my protests that a two year old really didn't need *that* much candy. We did attempt a few houses when we got home, which Kingsley was all for, but I was cold and wet and was pretty Halloween'ed out. All in all, a successful day.

Lastly, for those of you who have an interest in wheelchair costumes, Cassie from Beyond Measure has started up a blog to share costume ideas. If you've made a wheelchair costume before and want to share it or if you want to attempt to make one or just like stalking random things, check it out!

Saturday, October 27, 2012

M Argh I

Kingsley had his MRI last week and as usual, he did great. I don't know how we got so lucky, but he rocks the hospital stays. I suspect it has something to do with the fact that rules are constantly bent when he's around in the form of a lot of doting nurses, waterfalls of chocolate milk, unlimited chocolate Timbits, and an iPod that he doesn't have to share. 

Ever since his brief weekend in the hospital and his MRI, King has become obsessed with going back. The hospital is not far from our house, so when we're in the vicinity, he gets very excited. He hollers to go there, turn that way, go back, go see the doctor, go see the Cat in the Hat (there's a big stuffed one at the ER doors). I'm not sure that many kids beg and plead to go to the hospital, but that's my boy. 

We go back on Wednesday to get the results. I'm fairly confident that they won't show anything scary. Which, actually, just typing that made me really nervous about being blindsided... In any case, with his first two MRI's they called me within hours of us coming home to book surgery and that didn't happen this time. I'm taking that as a good sign. 

Wednesday, if you check your calendar, is Halloween, which is how I segue into the amount of pressure I am feeling about Kingsley's costume this year. This and this and this and this (and this and this and this) have caused me intense panic whenever anyone mentions Halloween. I stupidly decided that this was the year I would attempt a wheelchair costume for Kinger. I am not crafty, have I said that enough? My sister sucked all the crafty genes and left me with none, then she moved to the other side of the country so she can't help in these dire circumstances! Fortunately, I have a half-crafty friend and my sister's handy husband was in town. Between the three of us, we have created something that is pretty cool. Or, it will be once I finish it. :)


Monday, October 15, 2012


I left you all hanging!

Everything is fine. We saw Kingsley's neurosurgeon last week and she decided that the growth in his ventricles was not that severe and likely due to him growing. He is showing zero signs of a shunt failure, his shunt is all in tact and he's a happy kid. She is interested in his eye, which I now notice he's not using as much, sort of overcompensating with his right eye by turning his head everywhere to see things out of that eye. He's been referred to an ophthalmologist. And just to be sure, he's on the list for an MRI and should get in for that in the next couple of weeks.

In the meantime, he's doing great. Happy, healthy, good ol' Kingsley. :)

Our house is going on the market this week. It's been a little bit intense getting to the point where we are ready for this, so pardon my lapse. Hey! Here's a cute picture of Kingsley to make you happy:

 my mother is a cleaning freak!

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
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: 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. 

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. 

Saturday, December 3, 2011

Round Three?

The MRI is booked for December 15 with a follow up appointment on December 21, temporarily. They're still working out times since they want to do a full head and spine and that will take two appointment slots instead of the one they had originally planned on.

In the meantime, I have at least a dozen points in every day where I am convinced that we cannot possibly wait that long, something is wrong NOW. And then I have at least a dozen points in every day where I am convinced that I am overreacting because Kingsley is clearly as awesome as ever and not a thing is wrong with him.

Our concerns are that he had some sudden bowel and bladder changes in late September, followed by some rapid tightening in his hamstrings and odd twitching in his calf (tethered cord). He's also banging his head and grabbing/hitting his ears (shunt). He's waking at night, crying and he's much more irritable than his usual cheerful self (shunt). He's sleeping less and is eating less (shunt/Chiari). His language peaked and then has regressed, yet again (no clue). He's arching backwards in his Bumbobile and stander (Chiari).

On the other hand, he's teething and has been for about a month. His molar FINALLY broke through last night. He grabs both ears equally (his shunt is behind his right ear) and hits his head when he's frustrated, not really out of the blue (common in kids without language). His bladder stuff is all back to normal, his bowel stuff resolved when I dropped his PEG dose a little bit. He's fascinated with exploring his world now in both sets of wheels and seeing it from all angles - now that that is finally possible. When I'm with him or the girls are home, he's his usual self. When I go check to see why he's crying at night, he's all smiles and snuggles the second I get him in the rocker with me.

I just. don't. know.

While I am not remotely looking forward to putting him through another MRI, I am anxious to get answers.  My house is benefiting from the stress, but my wallet is not.  ;) I'm blazing through my list of Things We Need Done Before We Move. Christmas shopping is nearly done and if all goes well, the Christmas tree/decorations will go up in the next couple of days. I need the distraction or my mind takes me to places I can't function in. It doesn't matter. Either he's fine or he's not fine, but he will be.

Tomorrow, we meet Santa. I predict a lot of screaming. :)

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.

Thursday, January 27, 2011


Kingsley had his MRI today and did fabulous, as usual. The girls are both sick and I am not entirely sure I even slept last night, but that led to everyone sleeping in late which helped with not being able to feed Kingsley this morning. Another stroke of luck was getting called in over an hour early, which basically never happens. He gave the saddest cry in the world when the mask was put on him, which just about broke my heart. An hour later, he was up and waiting for me. We haven't heard back from neurosurgery with the results. I'm absolutely nauseated trying not to think about what could be going on. I imagine that at this point the answer couldn't be worse than what I'm thinking.  Hopefully, we will hear tomorrow.

no sleep + no food = ROCKSTAR

Sunday, November 28, 2010

What Happened

I can explain now what led Kingsley to having the surgery he just had and what the procedure actually entailed. He's in a ward room right now, so there are other parents there with their babies. I found myself telling his tale to another mama yesterday and halfway through describing his surgery I just stopped and started laughing. She was in there with her 6 month old daughter who has CP and just got a shunt put in. She just said, "Yeah. It's sort of crazy what our kids go through."  It's hard for someone who doesn't have a kid with these sorts of special needs or medical needs to fathom this sort of thing. It's hard for me to fathom most days. It's literally so far outside my realm of normal that it makes me laugh to think that this is actually happening to my chubby, happy, healthy little boy. Not that it's funny, just that I don't really know how else to digest it all.

Well, Kingsley wasn't doing so well with his leg functioning.  It wasn't just a matter of him not moving as much as expected, but more that he used to move more and now he moves less. We took him for an MRI to find out what might be going on. There was a large syrinx (like a cyst) right down his spinal column, top to bottom almost, putting pressure on his nerves. There was a larger part in the lumbar area (below your ribs) and a larger part in the thoracic area (mid back).  His NS thought that the syrinx had been caused by this other problem he has called Chiari Malformation II. That essentially means that part of his cerebellum is not tucked up inside his head like ours is, but instead hanging down in his spinal column.

The CMII is most often asymptomatic. Kingsley's is asymptomatic - he's never had trouble with it, it just is. However, it's filled up the space at the top of his spinal column and not allowed CSF (the fluid that moves around in your brain/spine) to move from his head to spine and thus caused pooling in the spine, aka the syrinx.

So, the goal of surgery was to create more space there that would allow fluid to move freely and hopefully, in time, allow the syrinx to drain it self or something and ease up on the nerves. To do that, they had to a procedure called a decompression. It has a fancier name - something like posterior fossa decompression, but I may be saying that wrong. If you find this stuff gross, stop reading.
.... okay, I warned you. They made an incision from the bump on the back of his head, down his neck. Then *lalalalalalacoveringmyearslalalalala* they took out part of his skull and part of two vertebrae (C1 and C2) and half of a third, I think (C3) and then put a patch (Jeff likes this part - says they took something from a cadaver's thigh, which may very well be true) of some sort of dura tissue stuff and put it over the place where the bones used to be, but not on as tight. That was sewn in, then everything else (muscle) sewn back up over top.  Ta-da. Big franken-line scar for Kingsley. :(   I hope I explained that all right. 

The MRI on Thursday night showed that there was indeed fluid now passing through around the cerebellum.  Not a ton, but it's there. He also has a lot of swelling happening right now. Hopefully, when the swelling goes down, there will be lots of room in there for the fluid to flow. In three or four months, he'll have another MRI to see how successful it was. Hopefully, between now and then we will see a return of some of the leg movement he used to have.

And that is why my baby is sad. Although I did get a smile out of him today! Just one, but so worth it. He's off the oxygen now and other than seepage from his incision (not CSF), he is doing fabulously well. He's very swollen all over from the drugs he's on, but that is going day by day.

Sunday, November 21, 2010


I had this odd thought this morning, that for us parents of kids with SB, waiting for a surgery is almost like waiting for our child to be drafted. We know that at some point, some time, it's going to happen. We don't know when - will it be in days, weeks, months, years - but we know with certainty that our child will eventually have to have surgery. In the meantime, we continue with our lives. Never completely comfortable making plans too far off in the futre, hesitant to make any decisions that can't be cancelled.  Always grateful in the back of our minds that it wasn't today. Every Holiday, celebration, vacation or special event feels twice as special because SB did not interrupt it from happening.  We hear about other kids getting the call before us and we feel those parents' anguish. We hug our kids a bit tighter. The dread creeps up. Once they head into the hospital, you just don't know when they'll come out, what will change, how they will be effected. Could be a quick shunt revision, could be a tethered cord release, could be one of the other side effects of SB like an ortho or uro procedure.  The only thing you know for sure is that one day it will be your child.

What a life we lead. And yet, when you look at their little faces, it's worth it.

Nevertheless, I feel like there is some big ominous ticking clock in our house. Or maybe it's just in my mind. Everything is falling into place and leading to a big scary unknown.

We got the results of the MRI from Friday night - all clear. Nothing wrong with the shunt, ventricles look great. I never thought I'd be so disappointed to hear that! King's usual NS has responded (while on vacation abroad) and said to go ahead with the surgery. No one seems to want to wait, which makes me nervous.

We had our date night last night (Harry Potter was even better than I could've imagined!!) and put up the Christmas tree because it occurred to me that it could be mid-December before Kingsley is home again and I didn't want him to miss a single First Christmas experience. I was going to see about tracking down Santa Claus for pictures, but didn't get my act together in time today. That will have to wait!

I'm hoping to get a pre-admit appointment tomorrow. I have so many questions about this hospital stay.  It's just so different from last time - he's older, he sleeps less. How in the world is he going to be fed?  How long can I stay? Where will he even be after his surgery? Will I be able to hold him and play with him? 

I'm also thinking about haircuts for him. They'll have to shave the back of his head, so I'm thinking we should do something fun to balance it out. I was thinking mohawk, but my mom is horrified. Meh, we already have the Christmas pictures! ;)  Maybe just a crewcut then. I want to do something though. A big ol' shaved spot just seems harsh.

Friday, November 19, 2010


We met with the NS today and Kinglsey is likely going to have the decompression surgery this Wednesday.

We saw the pictures from the MRI today and they were pretty amazing. I had done some reading on syrinx's last night, so I knew what I was looking at as soon as she showed it to us. It's huge. It goes down his whole spine. I said it was like a bubble, but it's not really. The spine shows up as a long dark tube and within that was a strip of white, almost the whole way down. That was the syrinx. It was quite alarming to see the widest parts at not only his lumbar, but also a wide part up by his thoracic area.

We could also see the Chiari - the back of his brain pulled down, just like the pictures of it in books and online. Insane when you see it as YOUR child. It went down to C3, which was really hard for me to see. When the brain is pulled down to C4 or below, there is a high likelihood of serious complications.  That's just too close.

This wasn't our usual NS, but she was fantastic at explaining everything that she saw and thought. She explained the surgery to Jeff in more detail than I cared to hear. If I wasn't so horrified, I would've laughed. Jeff doesn't always attend appointments with Kingsley and I because he's busy at work and I'm pretty good at remembering everything. But when he does attend, he asks the most bizarre things. I give the doctors a lot of credit - they rarely act as though it's something they've never heard before. I still tease him about asking King's NS about 'sprinkling some stem cells' in his defect before she closed it up.  Ah, whatever makes him feel like he has enough information ;)

The take home point of the day is that we are lucky that we've caught this when we did. It should have been caught earlier, which is something I will be very mad about for awhile, I think. If left alone, things could get really bad for Kingsley. This NS is going to email our usual NS to get her opinion (she's on vacation). We went for a quick follow up email tonight (poor guy, he did awesome. screamed for the full 5 minutes he was in) to check that his shunt is okay. If for some reason, his shunt is malfunctioning, that would actually be fabulous because then we could do a shunt revision instead - a much simpler surgery. It's not at all likely though. On Monday, Kingsley will have a modified barium swallow to get a baseline for his feeding and swallowing. 

We have four days until our life is flipped upside down again. I'm trying to talk to Rachel about what is going on. We're setting up playdates and grandparents on nanny-duty.  I am worried about how Cordelia will do, since she's too young to really understand where Kingsley and I will be and when we're coming back. I'm going to try and spend some girl-time with them this weekend.  Jeff and I have our big Harry Potter date night still on for tomorrow night. It doesn't seem like enough time, and yet I want this surgery to happen right away.

Thursday, November 18, 2010


Kingsley had an MRI today. Have I ever mentioned before what a rockstar my son is? Because I really feel the need to say it again. He is amazing. He had a rough night, lots of trouble getting to sleep. It's like he knew today was going to be a long day and was as worried as I was! He was up at 6:30am and was quite pissed off that I wouldn't feed him. Kingsley was not liking Mommy very much at all.

It took two hours from arriving at the hospital until they finally took him in for the MRI. In that time, he was so patient. He must have been so tired and so hungry, but he smiled at all the old folks waiting for their CT scans and MRI's and snuggled in my arms and just hung onto my neck. Not a complaint from him.

We got him changed into his gown and then it was time for the mask. This is when he got angry. It probably only took about 10-15 seconds for him to breathe in enough to fall asleep, but it was a looooong 10-15 seconds for me (and likely him!).  Horrible. Jeff and I walked out of there and I almost cried in the hallway. I was so filled with guilt at putting him through this. I had this dreadful feeling that they were going to find absolutely no explanation for his decrease/lack of leg functioning. I was sure they were going to tell me it just was what it was and I would have to stop moaning about it and just accept it.

The guilt stuck with me all through the 1 hour wait for him to get the MRI and then while he was in recovery. He came out of it wonderfully. I could hear him screaming down the hall after he woke up. Turns out, the nurse was trying to give him a bottle. :)  LOL! Good luck with that! We were sent back up to PMDU where he passed all his tests and we were sent home.  He was so happy, so bright and cheerful, just like none of it had happened. His resilience amazes me.

We were home only a couple of hours when his neurosurgery nurse called.  Kingsley's neurosurgeon is on vacation for a couple of weeks, so the other paeds NS and she had gone over the scans.  They want Kingsley to come in tomorrow morning. They need to speak to us and the NS wants to assess Kingsley herself.

Because now we have our answers.

I don't quite understand all of it and I am not certain what is going to happen next. What they saw on the scan was like a cyst on Kingsley's spine - a syrinx. It's a fluid filled bubble, like having hydrocephalus of the spine almost.  I think that's not entirely abnormal, but I guess it's a fairly good size - it covers a few vertebrae. It's probably putting pressure on his spinal cord and restricting nerve functioning. That's likely why he's lost some functioning in his legs. 

I'm not 100% sure how it's all related at this point and but the syrinx has something to do with Chiari.  Arnold Chiari Malformation II is one of Kingsley's other diagnoses. Most people with SB also have it, but the majority of the time it's asymptomatic. In a nutshell, it has to do with the brain being pulled down into the spinal column. Because Kingsley has never shown any symptoms of Chiari, it hasn't been a concern.  Big red flags would be things like stridor, sucking/swallowing problems, apnea, headaches, vomitting, and failure to thrive. None of that describes my happy, chubby, milk-loving baby.  So, it was quite a shock to hear that the Chiari is pretty severe and likely the reason for all of this. Chiari can cause blockage of the flow of cerebrospinal fluid (CSF) which for some reason causes a syrinx, if I'm understanding correctly.

The solution that will likely come of all of this is another surgery called a decompression.  I have heard of it and know it's something that happens in the SB world, but like all things, I treated it as a need-to-know sort of topic that I clearly did not need to haunt myself with. Well, now I need to know. And the more I find out, the more I wish I had never heard of it. It's another brain/spine surgery that would leave King with a big long scar on the back of his head/neck. That's about all you probably want to know. I've been advised to stop reading and just listen to what the doctor says tomorrow, and judging by the horrifying summary I just read in Living with Spina Bifida, I think that's for the best.

The idea is that a decompression would help relieve some of the pressure the syrinx is putting on the spine by restoring flow of the CSF.  If that doesn't work, they would then try to drain the syrinx. If that doesn't work, they could put a shunt (like the one in his head) in the syrinx to make it smaller. Those would be separate surgeries though, not something that would be done at once and hopefully, we will not have to go there at all. There is a decent chance that a decompression surgery will help restore some of the lost functioning.

I feel like this is all fake. I can't believe that they're going to actually tell us tomorrow that he's going to need this surgery. Two more weeks in the hospital. It seems surreal.

And then there is the possibility of... walking. Standing. I'm afraid to even hope for it.

At this point, all I want for Christmas is my boy home with us. Healthy. Happy.

Related Posts with Thumbnails