"For all the Mother's fighting for better days to come...stand up say Yes I will, Yes I can!" Alicia Keys

My face is sore. Very sore. I have TMJ and after my dentist appointment on Friday, I have pain in both sides of my jaw, my neck and a bit of a headache. Eating hurts, but at least it is good for my figure. I don't remember it bothering me so much after the dentist before - but maybe I have just blocked it out. Anyways, I hate to complain about it now - since I have so much to be thankful for. It has been a very busy week. Mike has called me Supermom - which is kind of him to notice. So, I'm sore but I'm happy. My shoulders are feeling a lot lighter this weekend. I just imagine God leaning down, lifting boulders off of me, "Here, let me get those for you..."

I've shown the Webster house and taken calls on the Webster house a lot lately. Regina's housing market is really picking up again. There were some really promising showings last week - and I was sure that they would call again. They didn't. Then I showed the house to a couple around our age on Tuesday night. The realtor was nice, the man was friendly - but the "mom" didn't seem at all interested. After they left, I closed the door and started turning off lights. I had forgot how pretty it is to look out those back greatroom windows and just see open sky and Evraz to the right. It was black outside and the lights twinkled and the smoke and steam lingered above Kat's "Bolcano".
When we had first moved into that house, Kattie was two and she said, "look mommy A BOLCANO!" It was Evraz - Ipsco then, I think. Aren't kids the best?! I cried just for a second. I think all of the pressure was just waiting for me to crack - and I did for a short second. I was also frustrated with the house - it has a great location, it's super clean, it's new, it's finished, and it's priced below value. Why wasn't it selling?! I left the house, went home to my family, looked at Mike and shook my head.
The buses hadn't run all last week, because of all of the the snow. What a pain in the butt. Driving back and forth to school, scheduling Sam's naps & feedings, and normal household stuff in between. Kenzie didn't go to school a couple days - since I had no way to get her there in the beginning of the week. Then later my neighbour friend and I shared kid pick up duties. It helped a lot, but man, am I grateful that buses are running again this week! I had also been trying to get to the other house as much as possible to clean and freshen - so everything was gleaming when I had showings. It's amazing how a house can get dirty with nobody in it.
Wednesday night, we had company and it was really nice to just sit, eat, drink and relax. I believe we were right smack dab in the middle of laughing at my cousin's skiing ability when the phone rang. It was the realtor from Tuesday night. They want to see the house again and then write up an offer! Unbelievable. I didn't want to get too excited, as we had one really low and ridiculous offer already (months ago) - but I was really hopeful. Thursday I had plans with my very pregnant sister in law. I felt bad changing our plans, but I really, REALLY needed to work at the old house before they walked through again. I wanted to line the drawers, especially in the bathrooms, wash the floors, and try to get it smelling good again. The house smelled different - not awful, just different than what I'd like my house to smell - so I was on a mission.

Thursday, Alex (my brother's wife and soon to be new mommy) and my mom came to town. Mom kept Kat and Sam happy and Alex kept me happy. Thank goodness she is nesting! She was the perfect cleaning companion at the other house. We did lots. I was really happy with how it all turned out there. The house looked sparkly and smelled fresh. I had just enough time left over to run to the school, pick up Kenz, feed Sam, get back to the house and show it at 4:30. It was a good thing that I went over at 4:10, because they came at 4:15pm. They stayed for an hour. The couple (and their little boy) looked around and planned on their own, and it gave their realtor and I a chance to visit and negotiate. I gave him my thoughts and he was very receptive.
They left the house happy and so did I. I went home and by 6pm the realtor had called with their offer. It was good. It was pretty much what we wanted and possession was even better - in three weeks! We agreed, he came over, papers were signed and we have a conditional deal. All conditions will be removed by this coming Friday. Then, hopefully, our house will be officially sold.
Finally, Friday arrives. We called a babysitter to stay with the girls - as Kenz had no school. Mike, Sam and I were all anxiously excited to go see Dr. Buwembo. We had the CT in hand, and we were ready. Our appointment was set for 9am. He arrived at 10am. I was worried that I wouldn't make it on time for my dentist appointment, which was at 11. He called us in at 10:10. Dr. Buwembo is tall and very dark - very striking. He is also very kind. He immediately took to Samuel. Sam took to him as well. He thought that he looked better in person than in the scan. He thought that his forehead was nice and wide - considering all that was going on. He wants to see Sam monthly to watch how he is growing. He even thought that by 24 months, if he is growing good by then, we will be out of the woods. We left with great big grins. We couldn't have asked for better.

*I will post a pic of Kat's Bolcano later to this post - after I run to the other house...

Will You Come Back?

Every night, after I say goodnight to my Kattie, she asks me, "will you come back?" And every night I tell her Mommy always comes back. She needs to ask so she can fall asleep, and I need to check on her so I can rest too.
Something's itching at my brain - picking away, eating my insides. Is it that I'm just tired? or maybe that I'm feeling guilty about Kenzie not going to school tomorrow since the buses aren't running again. I have some guilts, fears, and anxieties that linger in the back of my mind just waiting for the right time to surface. Sam's appointment is on Friday. I'd be lying if I didn't admit to being afraid. I mean, a little afraid. I am so sick of anyone telling me, "I just have this good feeling that everything is fine". Well good, I'm glad you have that good feeling. I don't. And you, wanting me to say that I do too, will not actually make me have those good feelings. It doesn't work like that. And please don't congratulate me on the "good news" from Calgary. I am very thankful, that surgery is likely not required. But I am still sad, that cranio is still his diagnosis. And if you were grieving, I would never say, "get over it, move on, you are not allowed to grieve anymore!" The terror of surgery is gone, almost completely. I'm even back to eating again, for a few weeks now. Someone asked me, if I can let it go? And the answer is no. I can't. My Samuel, has been diagnosed with something that doesn't go away. Even if he had surgery, he would still have that diagnosis. It isn't something that they can just remove and Tada! He's cured. Nope. It's something that will always be a part of him. It's the way he was programmed to be.
Programmed to be - is how our pediatrician described it to us. How he is made. So, my beautiful bouncy baby boy is perfect just the way he is. Anyone who looks at him can see that. But then there is my brain, that asks questions - that maybe shouldn't be asked. Questions like, his perfect little head is a baby head, what happens when he is a man and it can't grow like the rest of him? Or, how is the pressure and shape of his mild condition going to affect his behaviours and learning abilities. My boy is brilliant - for a 7 month old. And his head is big enough for a 7 month old. What happens if it just isn't big enough anymore? What happens if that time comes? Will the "fine" people say, "oh, wow, didn't see that comin' - gosh that's a bummer." Because I'm wondering and I need to know, if one person - who actually knows what they are talking about - can say to me and promise me, "His head is going to do all the things it needs to and he will never EVER have any disabilities because of his cranio". As Sam's mom - I am asking SOMEONE to promise me this. I think I know what that someone would say to me. I think and I feel inside that no one can promise me this. This is what I can't let go. I can let go of surgery - I almost have. I can't let go of Sam.
Five months ago I worried about getting enough sleep at night - and how the foods I eat will affect my breast milk. I remember trying to decide if I should take a strollercize class with my neighbour. Those days, seem so very, very long ago. Now that I know that there is craniosynostosis, I worry about so many other things that five months ago I never even knew existed. I feel robbed a little bit. I know that many, MANY mothers have it much worse and much harder. I know a few of those mommies quite well. But nobody plans for their child to have a "condition". Can you imagine, filling out your form during pregnancy? Please check a minimum of 2 items:

• blindness
• deafness
• craniosynostosis
• seizures
• cerebral palsy
• autism
• behaviour problems
• cancer
• diabetes
• speech delay
• etc...

Of course you can't. Nobody signs up for anything. You take what you get. And you do the best you can. I'm not mom of the year. I make a lot of mistakes. Sometimes, I don't learn the first or even the second time. But I always come back. So when my child asks me, "will you come back?" The only answer is yes. Mommy always comes back.

4 teeth and a Shower

Sammington has been working on his 4th tooth since New Year's. I think it is here. I thought that he had cut #4 and #5, but I think #5 is just pressing up into the gum and hasn't cut yet. The poor guy feels so awful - he doesn't sleep properly, he can't eat, and he's so snotty. This past week I have named Teething Week. We have had very VERY little sleep. He's so rundown now.

Teething Week wouldn't have been near as much fun, if I hadn't also been planning a shower for my good friend, Sarah. Thankfully, my aunt and Sarah's mom took care of most of the food. It was all so nice. And I cheated a little with my cupcakes...I ordered the cake part from Sobey's and just decorated them

with fondant and "ears". I premade all of the dots and bows, so that when Mike picked up the cupcakes for me, I could just plop them on!

Speaking of Mike, I have the best husband in the world! Not only did he not complain about 35 strangers in our home, or that I decorated the whole house in pink and white polka dots, but he also helped me get everything ready with the 3 rugrats in tow. He is awesome. I am so lucky - he looked pretty cute yesterday too ;)

The day, I think, went pretty well. I hope Sarah had a nice afternoon. There are some moments in life that become "forever moments" - those times, that 10 years later (and I'm imagining - maybe even 40 years) that become attached to that moment, telling a story, creating a memory. I'm hoping that when Emily is 30 years old, her mom will look back in her baby album and see her baby shower pictures - and smile.

We've missed you Monkey

When Mackenzie was 18 months old, she had a kidney infection and had to be hospitalized. Mackenzie was always underweight and was also dehydrated at that time too. Poor little thing had such a rough start, it seemed to take her forever to get healthier and stronger. I wish I had pictures to post on here, since she looked like such a dolly in her hospital gown. Anyways, during that time her Uncle Brad and Auntie Michelle came to visit and brought her the cutest little Monkey. She immediately fell in love with "Monkey".

Monkey stayed a close friend for a long time, until Teddy came around. You can probably guess what Teddy was, Kenz has never had the most imaginative names for her 'friends' (she even has a stuffed dog named "Furry Pinkwhite"). She still loved Monkey, but Teddy was the new BFF.

Then Katarina came about and once she was old enough to claim things as hers - she decided that Monkey should be hers. Thankfully, Kenzie didn't put up a fight and let her baby sister have Monkey.

Katarina sleeps with Monkey every night. She loves Monkey. Monkey is a boy, but he wears a dress now. Every morning, Kattie comes down the stairs with all her buddies - including Monkey. She often asks to take him with to the grocery store or where ever else we need to go. I always say no. I knew that if Monkey was left or dropped that we would have trouble, so Monkey usually stays and holds the fort down until we get back. Well, Daddy was in charge on Friday, and Monkey, the lucky guy, got to tag along EVERYWHERE they went.

Then the worst happened. Monkey was missing. We searched in and out of everything and everywhere. I've even made some phone calls to locate Monkey. Poor Kattie was up until 11pm last night, she couldn't sleep. Monkey needed to come home. And I was blaming Daddy. Mommy never would have let Monkey leave the house.

So this morning I'm washing Kattie's bedding and I ran back in her room to grab something. There is Monkey laying on the mattress pad - hanging out all by himself. I asked Kattie where he had been. She then raised a little Dolly diaperbag (which had been laying in the same spot since Saturday) and told me that she had told Monkey to wait in there until she comes back but she forgot about him. I can't even believe she fit him in there. WHEW! I could not be happier to see that little guy! and Whew for Daddy too...he is off the hook for this one ;)

Speaking of monkeys...Here is my little monkey under our kitchen table. All was great until he stood up tall. Then there was lots of tears, "Mommy save me!"

Cold Soul....where's that HOT CHOCOLATE?!

Today Kattie told me her soul is so cold. I immediately gave her a hug and said, "OH NO!" She told me that I could make it better. So of course, I asked how. She said that she saw a commercial that said Hot Chocolate will warm your soul. I love her.
It has been another busy day. Katarina has been better behaved lately, but Sam has been more unhappy. It always seems to balance out. That darn tooth. He is so very drooly and snotty. He fussed a lot today. Except for when we left the house. It distracted him a little. We ran out today to grab another curtain rod for the great room and look for some pink curtains for my Dolly's room. I am hoping that if we get pink curtains that the need for pink walls will disappear!
Sammington, looked smashing today (can boys look smashing?!) He was wearing light khakis and a fantastic plaid shirt in browns...with a dark brown tee underneath. I also used a dab of Crew hair gel to give him a slight faux hawk. He knows he looked good. Watch out Shallie...
Thankfully, it is EDO Thursday, Mike and I can unwind for the week. We've been watching 'Funny People' over the the last few nights, and hopefully finish it tonight. It's really tricky to watch a movie with Sam. He's just so loud and busy and 7 months old. It's more of a serious movie, but still has it's humour. It's just what I need right now to distract me from worrying and being sad. Both seem to catch up to me at night when I'm tired. Too bad we couldn't solve all of life's problems with hot chocolate, a faux hawk, and maybe Lady Gaga's advice - to just dance, and everything will be ok. It's also too bad that I hadn't noticed sooner that the blind was open in here for the whole world to see. It's a good thing that nothing unusual happened. Ack.

AW-kward..

"Uh hello Kristen, are you Samuel's mom?"
"Yes, I am"
"Dr. Buwembo would like to see Samuel on January 29th, 9am" (what is with all these 9am appts??)
"Ok, we will be there. Do you know if he has seen the scan images or just the report?"
"He has seen the CT - but there are some hard copies of the 3D reconstruction that we're having sent over for your appointment." Hmmmm, sent over from my kitchen? I better say something.
"uhh...yes, I think I have those here. I will bring them."
"Noted."

I'm interested to see what he will say. Dr. Buwembo is a neurosurgeon here in Regina - and is very highly rated. I have read wonderful things about him. Although we went to Calgary, it was not that I doubted his ability. It was that he doesn't specialize in cranial facial and I wanted to see a pediatric neurosurgeon that did. In my ideal little world, Dr. B tells us that no surgery is needed but he'd like to keep an eye on my boy to make sure all is doing as it should. That is what I will hope for. I will try and stay positive!

It's been a busy week of cranio, teething, and I registered Kattiepie for Kindergarten in fall! She is so excited for school. She's so smart she'll do good, but I have a feeling she will have a short attention span and be very, VERY chatty. (Note to someone in particular - Shut it, I know what just went through your head. ps- said with love).

I wasn't able to choose morning or afternoon, they said it's all zoning issues. I really hope she gets morning. Sometimes I worry that the kids that are in the afternoon are the kids whose parents need to sleep in everyday, because everyone stayed up way too late. My apologies to anyone whose kid is in the p.m Kindergarten class.




Viewer Mail

I'm impressed, there were a lot of questions for this week's viewer mail - sorry I had to cut a few!

1. Do you soap or shampoo first in a shower? I shampoo, rinse, condition, and then soap while the conditioner's on.
2. Do you blow dry your hair, or just let it air dry, or towel dry? any of those, depending on the day.
3. What is your biggest pet peeve? Yikes I have a few. I think it is a tie between texting someone when you're visiting with me and going offline without saying anything (if we've been talking the whole time).
4. At a movie theatre, which arm rest is yours? the right one when we're with the kids, and the opposite side that Mike is sitting on, if I'm with my boy.
5. If life was a sitcom, what would be some of the episode titles? ooooo, last summer when there was a wasp in the house and it bit me, "The wasp in the Kitchen" or "Ma's visit". Mike had actually said this last summer, that a crew should follow me around all day - because he thinks people would watch. It's never boring here, someone is almost always funny or nude or both.
6. Non kid related, what's bugging you today? My vacuum died and my flatscreen is going black. Both are under 3 years old. Although, in my vacuum's defense - it is used a lot.
7. If you had to pick your child's occupation at this moment what occupation would you pick for them?
Mackenzie - Veterinarian, because she LOVES animals and is so smart.
Katarina - It's not an occupation, but I always think of a little Grandma when I think of Kat, cuz she's so sweet and inventive. But maybe a teacher since she likes to do lots of activities and she's always busy :).
Samuel - that boy's a Football player. He is glued to the tv when it is on, his little jersey looks good on him, and he holds all of his toys like he's running with a football.

* After laying Sam down for his nap, I came out to see what Kat was doing. She did this with her little Barbie kids...perhaps I need to rethink my choice for her occupation or maybe it's just right ;).

up, uP, UP, DOWN, Down, down.

Yesterday was supposed to be Viewer Mail day. Viewer Mail will be tomorrow instead (hopefully). I should know better than to make a plan. The Regina General Hospital called me yesterday morning, in response to my message requesting to see the CT images. They said that they could burn me a copy of the disk and I could pick it up at any time or they would mail it out. I couldn't wait for the mail. I planned to pick it up immediately - just as soon as Samsam woke up for the day. He was sleeping in, since he had been up most of the night.
Samuel has been working on cutting his 4th tooth since New Year's. The boy is suffering. He is drooly and miserable - doesn't know what he wants. That tooth needs to come out for him and for Mommy and Daddy.
As soon as he woke, I bundled up the kiddos and went to the RGH. Finding parking was a nightmare, and then we walked (for what seemed a long time) in the cold - holding Kattie's hand and carrying the bucket that Sam really shouldn't be in anymore. We made our way to the X ray reception, that is where they had my disk. Finally, I would have a solid conclusion!
We made it home an hour later from when we left the house. I was so anxious and the kids were being so good. As soon as I had their coats off, I popped the dvd in the drive and sat down. It took me a minute to figure out the program they use for the scan. There are 216 images. The first image shows the report. "No intracranial abnormalities" - that's great. "Note the fusion in the metopic suture resulting with trigonocephaly" - hmmmm, interesting and very assertive wording. Then I flipped through many images that didn't show me anything. All of the pictures on the disk were of his brain. It looked fantastic - perfectly healthy, but it didn't prove to me anything about fusion or trigonocephaly. I looked everywhere and couldn't find those 3D images that I wanted. It said in the report that 3D reconstruction was done - but where was it?!

I called Radiology again. I knew I was pushing my luck. Thankfully the woman on the other end was very nice, she said she would do the same if it were her child. She said she didn't know why the images weren't included on the disk but she found some "beautiful" hard copies that I could have. I was ecstatic! I called Mike and asked him to pick them up on his way home from work, since Sam was now down for his nap.

In the meantime, the Cranial Facial nurse called me from Calgary. She apologized that she missed us on Thursday and was looking forward to meeting me. She said that she wanted to give us a great big hug for all we had been through, and was thrilled with our news that he was fine without surgery! She then said, "I'm so happy that it worked out this way, X-rays can be so inconclusive!" X-rays?!? I told her we didn't have an X-ray. She said that she thought the report was written based on an X-ray. I told her no...it was a CT. She paused and said, "oh - those usually aren't wrong."

The craniocoaster is picking up speed again and I was anxious to see those 3D images. As soon as Mike walked in the door, I grabbed them from him. They are big. They look like the big X-ray sheets (ironically) that you see on tv in a doctor show. They are beautiful, she was right. He is the sweetest little skeleton I have ever seen. And he has cranio.

You can see how clear his open sutures are, and then in front (the metopic) it is clearly fused. You can see how prominent his ridge is in the left picture. And also, this is hard on Mommy's heart, but in the right picture it does appear that there is mild trigonocephaly. Regina's not so stupid afterall. I can very much understand why they wrote what they did in the report.

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...