It's Just a Bone

I cried from 4 pm until 11:30pm yesterday. Not just little tears but choking sobs at times. I honestly thought for awhile that, "Yep, this is the worst day of my life". Then I came to my senses - a little tiny bit. I mean, Mackenzie had a really bad start to life. Grey, lifeless body, apgar of 3, not breathing. That was really bad, and we got through it. There have been other things that I have questioned, why me? And here I am, over those too. Everyone keeps saying, "you're only given as much as you can handle". I don't really believe that. I believe that as a mom you have to take whatever is given to you, even if it is too much. This is too much. I want to walk away and say, "no thank you, we're not planning on having cranio today". If only we had that option.

I went over in my mind ahead of time of what was going to go down at the pediatrician's office. I could even hear his accent, and see his lips delivering the news in my mind. "Samuel will need to see Dr. Buwembo for surgery on his metopic suture". I was ready for that. I was not ready to look down at the report and see closed metopic suture with Trigonocephaly. Trigon - another fear confirmed (google it on Wiki and read its appeal). He also suspects that the Saggital suture is closing early as well - but the NS can tell us more. But he did say, that he was disappointed with the CT, as he was SURE that there was also closure in the saggital. Good. Anything else we'd like to add while we're handing out cranial deformities, 'cause now's the time to do it! Watching him scribble in pen across Sam's file, craniosynostosis confirmed is forever etched with me.

I think I am on the angry part of the craniocoaster this morning. I am angry that any of this happening. I am angry that Kat has been getting up in the night more than her baby brother. I am angry at my 3 year old plasma upstairs that is already dying. I am angry with lupus and how it makes it harder for the one person I depend on most (other than Mike). I am angry hearing about all the vacations that everyone seems to be going on, while we're spending money on much less desirable things. I don't wish unhappiness on anyone else right now, I just very suddenly realize how fortunate it is to have good health. I'm angry that while everyone is celebrating the New Year tonight, I am screaming inside for my baby to not have to go through all of this. It hurts me so deep inside- the strangest hollow feeling. This hollow fear echoes so loudly, that I wonder if others can hear it too.

I am angry that there is so much pressure on Mike right now. And more than anything I am so angry with myself. I know that I'm wrong and shouldn't be acting this way. There is no time for anger or self pity.
I have to stay focused. Mike has booked our flights with West Jet for 6:55 am on January 7th. We'll be home around supper time. Mike said something last night that made me feel a little calmer. He rationalized that if it were Sam's elbow - we wouldn't like it, but we wouldn't be so afraid. He then reminded me, that it's just a bone and they'll fix it - just like they would all of the other bones to make it right. I am so lucky I have him.

The Craniocoaster

At first I thought this term was a bit dramatic - but it pretty much sums it up quite well. I go days, sometimes a week without an appetite, next moment I'm munching on everything. I'm happy that we make progress, nauseous that we're one step closer. I hope for the Children's Hospital to say, "it's mild, he doesn't need the surgery" (although both doctors here have already said otherwise) but terrified that it will be left and he'll develop ICP or Trigon or Chiari or become bipolar, or heaven help me - some incurable syndrome caused by brain malformation....and then death? Now I feel I am being dramatic. It's all around me - words of what can happen.
I dreamt last night that a little girl died from her cranio and one of my teacher friends had posted their sympathies on fb over it. I don't think you can "die" from cranio itself, but cranio can lead to other more severe health issues that can be fatal. It felt very real to me. I woke up crying. That was one of very many cranio dreams I had. Cranio is in my thoughts all day - all night.
I have so much pent up emotions, waiting for a phone call. The phone just doesn't ring. Nobody calls. I asked my mom why no one calls and she says maybe no one knows what to say. I guess she's right. What is there to say? I don't know what I'm expecting - maybe just to not feel so lonely in my fear. I don't know. I know Mike feels what I feel - he just manages differently, probably better. My family is very supportive but obviously can't make it disappear. Although, I have had some people say to me, "oh I've heard about that. It's not that bad". I told Mike that, and he told me to ask them if they'd like the sign up sheet for their child. How true. Cranio happens to 1 in 2000 babies, yet there is so little known about it. I didn't know anything about it until now. Sometimes I wish I didn't know as much as I do now. The surgery for example, it's absolutely sick. Horrific. I wouldn't wish it on any child or living being for that matter. I doubt I'll give details on here - too graphic (and some of you it may affect too deeply, it would have me at one time) but I will say Sam will have one heck of a scar running from ear to ear if/when he has the surgery.
During my research, I stumbled upon another mommy's blog. She posted photos (most of the moms do) of her son after surgery. He had on the sweetest Small Paul jammies. It said "Chicks dig scars" with the Small Paul logo of course. I think I might look for it or something similar. I looked for that picture of that boy, but couldn't find it again. Here's a photo of Sam jumping instead, while Mommy blogs. Have a good day!

Mermaid Moves

Last night, while Kattie was having her bath I decided to shower. Our ensuite is right next to the girls' bathroom and I could hear some major Titanic sounds coming from the other side of the wall. So I quickly got out and ran to check on Kat. She was lying on her side swishing her "tail".
"Look at my Mermaid Moves Mommy!"
"Wow, those are impressive! I'll go call Daddy to see." I then leaned over the railing and called down for him to come check out Kattie's mermaid moves. To my surprise, Kenzie came running enthusiastically calling back, "I wanna see!"
So she comes running up and into the bathroom where Kat prompty and proudly splashes her.
"KAT!" Kenzie was not impressed. I stepped in and told her she is just showing her mermaid moves.
Kenz looked annoyed and whined, "Awwwwwwwwww, I thought you said 'Mermaid Boobs'".

We have a Date!

January 7th, 9am. I'm glad. Relieved it's official. Well, part official - the time may change. The neuroscience department is overbooked for that clinic but they said, even though Sam just is scheduled in, "it is essential he be there". I know they say this because of his age already - but it still makes me feel a little edgy. It's just the consult with the surgeons, where they meet and decide what course of action Sam needs. Anyways, they did give me the name of both surgeons that will be working with him. There is a pediatric neurosurgeon as well as a plastic surgeon. The surgery is about 9 hours long and, I will talk about all the rest later.....breathe......
Mike and I have been trying to sort out flights and we were hoping to do a round trip in one day. Now with the 9 am appt, that likely won't work. I think we will have to get a hotel room after all - another expense.
I was reading on the Craniokids forum and read something that I thought was crazy (besides cranio and how they fix it) but the cost of this surgery in the States - $175 thousand! Half of the people on the board are talking about the fear of Cranio, and the other half share that same fear but are also terrified with how they can afford it. As if Cranio isn't enough stress?!


I like to title this next part, Viewer Mail


I know this blog is only a few days old, but happily for me, I already have a few loyal followers. I'd like to address a few of the most popular questions I have received.

1. What are we having for supper tonight? Pizza. Not even the good kind - just the throw in from a box kind. Too much hoopla to cook today.


2. How many times has Sam pooped today? I thought this was a little inappropriate, but most of us are mommies so.....wait for it.....2 times so far today!


3. What funny things have the girls done today? Kat looked at me, put her hand on my face and said, "You're not really that ugly mom" I LOVE those compliments that aren't really compliments. And Kenzie fell asleep hanging off the couch - she had a sleepover last night at her little friend's house and is a very sleepy little girl today.


4. What am I wearing? I am wearing polka dot loungey/sleep pants (which coincidentally I was pantsed in today while we had company in our entrance way- by Katarina) and a long sleeved white fitted t-shirt.

* Note: I did NOT include the pantsing as a funny thing that happened today.

I think my pizza is done now, and I need to book some flights. Happy Monday!

The Road not Chosen, but here We Are.

craniosynostosis (kray-nee-oh-sin-os-toh-sis). n. premature fusion of the some of the cranial sutures, usually before birth, so that the skull is unable to expand in certain directions to assume its normal shape under the influence of the growing brain.








sam's story

Sam was born a big baby. A really big baby. Our sweet little boy came in at 9lbs 10oz. after a 20+ hour labour on June 12th, 2009. He is awesome in every way. He eats well, sleeps okay, and has the best personality. We are very blessed with our boy.

As the weeks went by after his birth, his head looked longer and bumpier than his older sisters' heads were. I questioned this to various family, public health nurses, and of course the ped. Everyone said, it's fine - he looks great. I had a gut feeling it wasn't, but chalked it up to his instrumental birth (the vacuum was very briefly used), he was so large - even the OB said to me moments after delivering, "You did so good, he was just too big for you", and then there was the fact that he was a boy- boys have bigger heads don't they? I convinced myself that this was all it was, and my mind felt closure with these reasons.

When we went for his checkup with the pediatrician, I certainly was not expecting him to tell me any different than what I had come up with on my own. But the moment he traced and retraced his hands over the ridges on his head, my heart sunk. His hands just felt what I had been feeling for months. I think I even muttered, "it's not right, is it?"

I like the pediatrician, but I find he doesn't like to explain much or that I question anything he says. But, he is very smart - and I trust his wisdom. He decided to monitor Sam for a month to see if anything changes. I asked what happens if there are no changes, and he said very casually, "then we do a little surgery".

It was a long month. I felt his little noggin many times a day, hoping that it would be a little less bumpy. No such luck. Our follow up appointment was on Dec 8th, 2009 and I hadn't observed any difference at all.

Over the course of the month, I researched alot. Almost obsessively - I find education very healing. And knowing everything I did was very therapeutic. Strangely, I met a lady December 6th who told me about a friend she had -whose daughter had gone through the same type of surgery that I had been reading about. Even more strange, she had no idea about Sam. I hadn't even mentioned to her - or many people for that matter. I did end up asking her if I could get in contact with this woman, and she passed along my information.

We had our followup, just Sam and I. It was a crappy appointment. The ped. was running nearly two hours behind and when we finally did get in, he barely said a word to me. He immediately wrote up a form for a CT scan. I asked if there were any improvement, he shook his head no and told me, "It needs to be opened up". Those six little words still make me ill.

The other "cranio" mother did call me later that day, not once but twice. The first call we shared stories. The second call, I realized that she was an angel sent to me. She said, "I didn't think you were up to making phone calls, so I made some for you." She called a pediatric neurosurgeon for me at the Children's Hospital in Calgary. They were the ones who helped her. They specialize in Cranial Facial Reconstruction. And more importantly, they had my name and my son's name sitting on their desk waiting for his CT results.

The CT was 8 days later. Sam had to fast before it for 5 hours. They also were running behind, and he went a total of six hours without eating. This was huge for our giant baby. He was used to eating every hour and a half to two hour intervals. Somehow, he did amazingly. He never even cried until afterwards, when he was waking from being put out. He felt woozy and woke up to strangers and then he cried.

The next day, my GP called with the results. Fusion in the Metopic. Once again, that sick feeling returned. "It needs to be opened up", was said once again. She sent our referral and our scan to Calgary. That was December 17th. We have been waiting since. I can't even describe the feeling that's been inside of me for the past two months. Sadness. And so very scared. I know once we are on the "otherside" it will be ok. IF only we could fastforward over the bad parts.

December 26th, 2009

Boxing Day

Another year and all the decorations are boxed up and packed away. I was pretty pleased with myself today. Mike and I managed to clean up and put all signs of Christmas away - all before 1pm - with 3 kids "helping". I have to admit, Mike is fantastic help. Not just with putting all of our stuff back into the basement for another year, but with the everyday stuff that seems to lately, really pile up. He folds laundry better than anyone I know, including myself.
The day started off easy for me too. Sam and I slept in, quite late actually. Usually sleeping in means 8 am. Today, it was 10 am before I rolled out of bed. Highly unusual, but much needed. But now, my schedule is so off and I'm blogging at 12 am - when I should be sleeping. Mike just came in the room and made me make a deal that I can't get mad next time he wants to stay up when I want to go to bed earlier. I told him that I can't promise him that, I likely will be mad at some point. Now that we have the King in our room, it's kinda like going to bed alone - but still I know he's not there and then I won't be able to sleep anyhow- and then I will likely blame him. Really, it is in his best interest to just come to bed when I do.

I wanted to start this paragraph with anyways, but everytime I think of that word now I think of Ellen DeGeneres and the little blurb at the end of her tv show credits, where she heavily sighs and says, "Anyways". It always makes me smile. Anyways (smile), I started this blog to sort out my thoughts with all this cranio business that is hanging over us and this past holiday season. Of course, it will also very likely contain many witty and thought provoking quotes from my sweet four year old little girl - Katarina, as well as loads of insight from our oldest daughter, Mackenzie. But, another day for all of that. I really should hit the sack. Heaven knows, I have many cranio dreams ahead of me tonight. Thankfully, I don't need to remind myself to breathe nearly as much in dreams, as I do during the day. Now if only my heartbeat could get off the "craniocoaster" too.