Lessons of Compassion

I've had time to come down from the craniocoaster high. I've kissed Sam countless times, reflected on what has happened, and made time to talk to some moms from Craniokids. Some have had similar experiences - some have had two different opinions, some are metopic with no surgery recommended, and some just have the metopic ridge. I had a really good chat with one of the moderators on the board last night. She hopes that I can find some peace with what was said, but still thinks that it is important for us to see those CT images for ourselves - so we know if there is fusion or not. It is actually quite obvious when you see the CT. The sutures are present or not, simple as that. Trigon is extremely obvious - I guess that is why it took me so by surprise...Sam doesn't look like he has Trigon, yet the CT claimed otherwise. I am sure that Calgary is right about the Trigon - I am uncertain about any fusion - and I am ok that he has the ridges.
I said to Mike the other night that I feel like I've missed out on the last 3 months of Samuel's life. I have missed his milestones, his little baby moments, all because I was so consumed with worry. My Cranio friend said the exact same thing to me last night. She said that for the 6 months, from her daughter's birth to surgery - it was all a blur, the fear and worry overcome you and you miss everything else. She said that she had to go on meds, she was near nervous breakdown. I can understand - I couldn't eat or sleep either. There have been several nurses say that the CVR is one of the worst things to assist with. One nurse said she rather do any surgery over a child's cranial reconstruction. One of the moms posted pictures (I'm not sure how she had them) of her child during surgery. I couldn't look. I still won't. I know what they do - that is more than enough knowledge for me.
I eagerly accept the no trig diagnosis from Calgary. But my next step is to find out for sure about the fusion. I need to know. I trust that surgery is not needed, many mild cases of cranio - no surgery is recommended, but I need to know if fusion (craniosynostosis) is there or not. Then I can put this behind me and happily take my place as a metopic ridge mom.
I carry a certain amount of guilt now. I know that I should just be happy, but I've become friends with so many mommies that don't have and won't have the free pass that we've been given. "Natey's mom" posted last night (his surgery was yesterday) that he finally was stabilized in the PICU, he was on his 3rd round of codeine and his eyes were already swollen shut. She was just on her way to go get some rest for the night. I felt like throwing up when I read her update, that was almost us. I prayed last night for her son to have a speedy recovery and her heart to stay strong. I do feel guilty.
I don't want to question it too much, but it does make me wonder why all these life lessons? Tolerance, compassion, empathy and prayer - what am I being prepared for that these lessons are reinforced within me. I don't think that I am lacking in any of those departments, and what doesn't kill you really does make you stronger. I love the empowerment of knowledge, but sheesh....there has got to be a better way.

Bits and Bites

I didn't sleep at all Wednesday night. I couldn't fall asleep and I couldn't stay asleep. I finally quit trying around 4:30am and decided to have a shower and get ready to go. We were out the door by 6 am. Kat had been up in the night and my mom had stayed with us. I noticed that she was awake at both 2 and 5 am when I checked. I was worried how everyone would manage.






















"Mom, it's so early - too bright..silly!"

"MOM! Are you kidding me? I don't even know what you're thinking at this point"

Mike dropped Sam and I off at the front doors, it was -47 with the windchill. We grabbed our passes and waited for Daddy to come in.

We got held up a little in security, as they decided to search my diaper bag. Everything came out and/or oddly enough, squeezed. The girl in security kept telling me to step away from the bag - she makes me laugh. Then when she found my makeup case, holy doodles, no one has given me a look like that in a long time. She asked how long we were going for and I told her just a day. She was not impressed that I brought my makeup (which was only about 4 things and one makeup brush). Little did she know, that I was just prepared to bawl my face off at the Children's Hospital later that morning, and wanted to "fix" myself if I needed to. She picked up my creme eye shadow (a 1 oz. tube), looked annoyed and stuffed it in a baggie. Mike was standing behind me and said, "PHEW! Crisis averted!" I don't think she was impressed with us, but he did make me laugh.

Once we were seated on the plane, Sam really woke up. He was interested in everything! He looked out the window, played with the tv - loved it all!

"Seriously Mom, do you have to take a picture every two stinkin' seconds?!'






After take off, Samuel fell asleep and slept through coffee, Bits and Bites, the plane landing, and even running over to rent a car for the day. I held him for an hour and a half, until Mike finished putting the rented carseat into our little red car. We finally left Calgary Airport at 8:10 am. Our appointment was at 9 am.


Traffic was awful! We finally spotted the colorful Hospital at 8:57am (Calgary time). Mike dropped us off and parked the car. The Alberta Children's Hospital is beautiful. It is very honestly like Kid Heaven. There are shops and toys and little playgrounds all over the place. It's so clean and EVERYONE is so very happy to be there.


They had given us the wrong time (9 am instead of 11:30) but said we could still get started. The nurse came in and measured Sam's head. She left right away but said she would be back soon. Sam needed a snack since he finally woke after sleeping for so long. I thought I could get in a quick feed before the doctors came. I was wrong! They came in moments after Sam started. The neurosurgeon and the plastic surgeon AND the cranial facial nurse were there. Since Sam was eating they looked through my little album that I had put together for them. Both started to smile when they reached Sam's birds eye photos. I felt sad, thinking that now they have decided something. They both asked to feel his head. They felt his head and looked carefully at him.


The plastic surgeon did most of the talking. He asked for a time line on all of the events leading up to this. He then told us that Sam has a metopic ridge. But that many healthy children can and do have ridges. He then left Mike and I speechless. He said that whoever wrote up the CT report made a mistake. Samuel does not have Trigonocephaly. They said, that it was misinterpreted and they were very sorry that we went through all of this, because although Sam has ridges - he does not need surgery. He said that the type of diagnosis that Sam has, is very rare and he only sees about 28 kids per year with that type in particular. Sam is not one of those kids.


The photo below was taken moments after Dr.McPhalen's awesome news!! Sam knew!!






Neither one of us could believe what we were hearing. I am so SO relieved. We are so happy for our boy. How often do parents get a diagnosis, wait for a surgery date only to find out that someone made a mistake?! So blessed! I am so tired and thankful that this is over.

This is the last photo we took before we left the Children's Hospital. You can see how nice it is in the background! Doesn't my Sam look happy?!

We all slept so well last night. Today I feel clearer and have had time to digest Dr. McPhalen's words. I am still full of such mixed emotion. I am thankful that he won't be having his surgery. I am sad for the other cranio moms that don't get this relief. We dodged a bullet yesterday - and I know it. And a small part of me is scared that this is temporary relief. Calgary never did receive the actual CT images. They made their decision purely from seeing Sam and what the report said. I wish they had been able to see his scan for themselves. I still have to face the Doctor here knowing that we went against his direction. I do wonder if we had never gone to Calgary, if we would have gone through with the surgery here. I hope that "the experts" are right.

They also saw pics of my Kattie and said, "yeah she does have the ridge - but she looks good too". Maybe a few mysteries have been solved, and maybe still a few things need to be figured out. I do know one thing for sure. I am blessed.

Mighty Machines

My sweet Kattie just whispered in my ear, "I had to come upstairs, because there was a bad show on the tv! It was Mighty Machines." I LOVE that her idea of a bad show is Mighty Machines. I also love that she wants me to go to the Lululemon store tomorrow and find her something. Mike would cringe if he heard her say that. It's a good thing I made the, "honey I love you, but please stay off my blog" rule. Every now and then he'll walk in behind me and read as I type and shake his head. That's when I made the rule. Poor Mike - so many rules in this house and all made by me. Most of them are well warranted. Just to list a few:

1. No reading my Blog.

2. No farting in a clean bed.

3. Mommy may search for head lice at any given time.

4. No running on freshly vacuumed carpet for at least one hour.

5. If you smell like cabbage rolls, you must bathe.

6. Hands must be washed when you come home.

Clearly, these are the most important ones - but there are lots more.

WEll, our bag is packed (thank you Poopy Aunty for lending your awesome bag - it'll be perfect to carry all of our stuff for the day!) and we are pretty much ready. We are planning on getting up by 4:45 and out the door just before 6 am. We should be home by 8 pm - just in time to get the girlies to bed.

I want to thank everyone for all of the well wishes and love sent to us. It is so very appreciated. Have a good night and I'll update soon.

Kristen hates the Girl Gourmet Cupcake Maker

Lesson learned: No matter what anyone tells you, cooking a cupcake for 30 seconds in your microwave does not taste good.

This Blog is for Me

I had a friend call me last night. Normally, she is one of my most favorite people to talk to. Last night, I had to remember what my mom taught me very LONG ago, "if you can't say anything nice..." Anyways, the reason I am blogging about it - is not to complain about this friend (whom I really do love with all my heart) but to understand why, what she said bothered me. I know that she doesn't mean badly - in fact I am quite positive that she had good intentions. She said that a friend of a friend went through this surgery, and she is perfectly fine and the parents worried for nothing.
I bet you were expecting something much worse. That is why I was so confused myself, afterwards. I sat on the couch after the phone call, watching Heroes with my fella all the while, being secretly annoyed. I am thrilled, no actually I am THRILLED that all most likely will be "fine". What I don't understand is how anyone can say there is no need to worry.
***** Warning Graphic Material - Mommies that are post partum, friends with sensitive hearts and Grandmas please stop reading today's blog***
Quite honestly, there is no need to dwell. I have done my homework, I know what is involved and I know the end result. My friend is right. Sam will be fine. But let's be realistic too.
My unsuspecting little boy will be handed over (by his Mommy, me) to be laid on a table and have his cranial vault removed by a cranial facial surgeon. After it is removed, a plastic surgeon will work to put my baby back together they way most children are naturally made. During this 9 hour surgery, my Sam is going to lose so much blood that he will need some of mine. He will have a new cranium, new forehead, spacers, screws and all, and at the end of the day, he will lay recovering in Pediatric Intensive Care.
Over the course of the next 72 hours, my sweet little boy is going to swell beyond recognition. His face will be black and blue, his eyes swollen shut. He is going to be afraid. I will not be able to hold him or breastfeed him because he shouldn't be moved and he'll be in pain. Finally, by the fifth day his eyes should start to open. Then we will be allowed to go home. Sam will be back to himself but with a zigzag incision running from ear to ear. I guess this is the "fine" part.
There was one other part that I purposely left out. It's gory and it makes me feel sick....but at least I don't have to worry about it, because Sam will be "fine".
During the week of surgery in Calgary, my little girls will be in another province - here. I know that they will be well taken care of, but they are MY little girls. My oldest little girl will have to go to school every day when I know that she won't want to. My mom will have to deal with any troubles that I normally do. She has agendas, school lunches, buses and everything else that Mackenzie normally has to deal with. My youngest little girl doesn't sleep. She gets up many times a night - again, my mom has to get up then too. It is hard enough for my husband and I to manage them, but it is a lot to ask of my mom. Yet, I have already done just that. I have never been apart from either of them for more than two days.

I'm not crying (at the moment), I'm not depressed, and I'm not always angry. Today, a good friend of mine is planning to come over and we'll rant, rave, gossip and likely drink way too much coffee. I've giggled twice today until my gut hurt over "Helllllllooo Gorgeous!" McDonald's has Chipmunk talking Happy Meal toys right now that all 3 kids seem to really enjoy. I think later we'll make Gourmet Girl cupcakes and I'd also like to get a chiropractor appointment in, because Gigantor is killing my back. What I'm saying is, is that I am fine. Sam is fine now and will be fine later. I am going to worry and be sad and blog about it when I can. I am gaining extra grey hairs, I think I may have gone down a size, I look like I need a little botox these days and I'd like to stay drunk until this all over. But I am still a Mommy, a wife, a daughter and there are lots of people that need me too. Life goes on, no matter what.

Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland





I first read this by Emily Perl Kingsley while I was in education at the U of R. I remember thinking ok, I get it. And then years later, Mackenzie came along and I recalled Holland again. That was when I really started to understand. Now, since Samuel and craniosynostosis have come into our lives - a fabulous person reminded me of it once again. I've been very fortunate to have many beautiful, caring, and supportive people come into my life - especially recently - complete strangers that come swooping in, like angels, sweeping me under their wing.
I guess it is true that people come into your life for a reason. On December 6th, I had just that happen. I met a woman, who wanted to book some time with me to discuss Arbonne. I told her that I would love to get together, but this week in particular would not work as my son had a special dr. appointment (I didn't say for what). Then, for what I am absolutely sure was God's own hand guiding her, she told me about a little girl who had a surgery to repair her misshapen head. She told me that when everything seems hopeless, to keep my faith. I hugged this stranger. I know that she was sent to help me. I had not told her about Sam, or anything about myself for that matter . All she knew was that I liked Arbonne. Since then, she has touched my life in other ways. She told me the day she met me she said to her husband, "I was meant to meet that girl today - there is big things in store for her." She told me that I give off very strong, positive energy. I'm not sure how I feel about what she said to me, but it does make me happy that someone can feel life coming from within me. Lately I feel like a zombie, walking from room to room, yelling at kids, and cleaning up messes.

I made another discovery the other night through my own paranoia. I decided to feel Kenz's and Kattie's noggins to see the difference. I haven't felt, I mean really felt their heads since they were babies. I wash their hair and put ponies in of course, but it's not the same thing. So I gave them a good and thorough check. Kenzie has a perfect head. It's round and has no bumps. Phew! My sweet Katarina, to my surprise has a very prominent ridge from just below her hairline to about the middle of her head. She has a metopic ridge. I told Mike right away, and even more to my surprise - he had already done the same thing and discovered it as well. I guess that we will be taking her to get checked sometime. What is the likelihood that we would have two kids with cranio?! I don't think she has a funny shaped head, but she definitely has the ridge. Maybe it will turn out to be nothing. I hope so. She also has a physical symptom that goes along with Trigon, but it may just be coincidence. Either way, she is four years old and is doing well (I think) - so if it does turn out that way, I am sure it is very mild.

Another new friend, a cranio mommy posted this as well and I thought I'd share it here too.

YOU HAVE SUPERPOWERS. So maybe you're not Spiderman (though wouldn't those webs come in handy sometimes?) You still have senses and abilities far more developed than those of the average parent. Your senses tingle when something is wrong with your child, long before anybody else notices a difference. With your X-ray vision, you see through inaccurate diagnoses and inadequate treatments; with your superior strength, you blast through red tape and past ineffectual bureaucrats to get your child what he or she needs; with your lightning speed, you swoop in to keep your child out of trouble. Like many a superhero, you can't always explain to mere mortals how you know what you know. But as Peter Parker himself learned, with great power comes great responsibility.

I liked it, I think that many mothers have that instinct for their children's needs and well being. I'm so lucky to have so many fantastic mommy friends that fit this Superhero description. Cheers to all of you!

This is Where We Used to Live

I've had the Barenaked Ladies, the old apartment lyrics in my head all day. Mike, Sam and I went to the other house this morning to freshen up the old girl on Webster. The girls were at my mom's for the night and we had someone coming to look at our house today. We were renting for a few months, and just wanted to make sure it was good as new for viewing. Mike wanted to do some hole patching and I wanted to give the walls and floor a good scrub. Sadly for Mike, we forgot a radio and I have an awful habit of randomly bursting out in song. I think Sam really likes my singing. He looks at me like I'm a rockstar. He hung out in his exersaucer while I washed the walls and rocked out to the BNL. Overall, it was a very productive day. The house is spotless (well, pretty close anyways), and it smells good too. I simmered some homemade apple cider while we were working to make it feel a little homier.




Our boy was in the paper yesterday for the Babies of '09. I like the picture we chose, but I can really see that metopic ridge in this particular photo. It makes me mad - not the picture, just the ridge. You can't really notice it too much in the printed newsprint, he just looks like our Sam.
During this past week, Sam now rolls all over the place, lifts his whole upper body up and looks around, pushes buttons on his toys and cut 3 teeth! He is such a good little boy! He just amazes us every single day...