Our Little Life

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A few months ago we finally got a diagnosis for Claire. Dr. Bolduc at the Glenrose Rehabilitation Hospital did a gene karyotype and found a deletion on her 14th chromosome where she is missing the gene called FOXG1. They are calling it a variant of Rett Syndrome because it is so new that there isn't a real name for it yet. The only other reported cases are in a family from Italy. The children are still young so we really don't know how Claire will be affected in the long run and their case is also different. These children have the gene but it is mutated, while Claire is missing the gene. Apparently a mutation can often be more harmful than a deletion because the mutated gene can affect other genes.

Ryan and I had blood tests done to see if we contributed to this missing gene by translocation (basically, Ryan and I would have all the necessary components but when our DNA split when we gave half to Claire, it might have been missing the piece she needed). It's all very complicated and I wish I had studied more about genetics. However, if we had passed it on to her, the chances would be very high that any more children would have the same disabilities as Claire. (I don't want it to sound like we wouldn't want another child like Claire - she's been a huge blessing in our life but quite honestly it would put a very serious strain on our physical, emotional and financial well-being).

Well, today we got the good news that whatever happened with Claire was a rare occurrence and there is no increased risk for the same disabilities in any new children. It's kind of nice to have some answers about what happened.

I've done three new posts so make sure to scroll down to read them all....if you dare.


I got tagged by Brenna about a year ago to tell 7 interesting things about me, so here goes:

1. I love to do laundry and load the dishwasher, but I hate putting dishes and clothes away. Also, when I load the dishes, first I have to sort them into categories and then put them in. When I'm hanging up the clothes I do the same thing. I have to take everything out of the washer, sort them into categories and then hang them up in groups. Maybe OCD, who knows.

2. I hate veins, I hate thinking about them, I hate to look at them, I hate it when people touch my wrist where all those veins are....I'm crazy, I know. Along with this one...I hate needles.

3. I love step aerobics - the more complicated the routine the better because it helps take my mind off the fact that my body is suffering. I hate running though.

4. I normally hate onions, but I love onion rings. I'm a big texture eater - I get in the mood for something crunchy, smooth, crispy, snappy, etc.

5. I'm a night owl - I like to stay up late. But since having kids, there is no such thing as sleeping in so I've had to take it down a notch.

6. I'm a list maker - I make lists for everything: groceries, things to do, goals, etc. I even add things to my lists that I've already done, just so I can cross them off. Then I feel like I've accomplished more.

7. I love to watch Stargate SG1 and Atlantis and the movies. I'm a geek.

Here are some things that our family does every year around Christmas time:

We decorate our house no earlier than December 1st. We usually try to do it all together on the first Family Home Evening Monday night of December. After we set up the tree, we turn off all the lights and lay on the ground to look up at it.

So far this year Madeline has only knocked the tree over once - luckily no one was under it and all that happened was a few ornaments broke. Unfortunately one was filled with glitter so it made quite a mess.

We make our own advent calendars to countdown to Christmas day. We buy candies and spread out a long piece of saran wrap and lay them down, fold the wrap over and tie ribbon between the candy. This year we had to hang them higher up so Madeline couldn't grab them.

We try to go to the Festival of Trees and Bright Nights festival each year. The girls really love the lights and music of the tree festival and the Bright Nights is fun. There are tons of light displays set up at Hawrelak Park and you can drive through and look at all of them. Claire really enjoyed it last year.

My mom always makes gingerbread houses for us to decorate. This year we just did the houses and celebrated my Dad's birthday on the same night. We also have Grandma Patterson's birthday, Natalie Layton's birthday and Ryan's birthday to celebrate during the Christmas season each year.

Since we've been managing an apartment building, we've made little gifts for each tenant every Christmas. It's not because we're hoping for anything in return but it helps me to feel more charitable towards certain people that I may not like very much. Maybe that's a selfish reason but I like to think that it greases the wheels of communication, or some such metaphor.

Family gift draw - in Ryan's immediate family and my extended family we do gift draws. In my family we have a theme and rotate buying for couples/cousins each year. This year the couples gifts were "emergency preparedness" and the cousin gifts were "socks/footwear."

Since I've becoming hooked on paper crafts, I designate this one time of year to making a ton of cards. I like the assembly-line strategy of making a lot at one time and I love seeing the stack of stuffed, stamped and addressed envelopes. I also love the feeling of dumping them all in the mailbox at the same time!

We always buy the girls a fancy Christmas dress that they usually wear the Sunday before Christmas.

Christmas Eve is a fun day - we usually go bowling with Ryan's family during the day and visit with them. My family always orders a huge Chinese food feast for supper and we eat it while watching The Grinch or other Christmas movies. We then act out the Christmas story while Dad reads it from the Bible. We also used to fight over who got to be the donkey and got to wear a pair of nylons over their head. We always use a battered old Dennis the Menace doll as baby Jesus. It may seem like a sacrilege but it's tradition now! My dad always plans an elaborate plan to show us where our Christmas Eve presents are hiding. He's done coded scavenger hunts, obstacle courses and Herculean tasks to complete. We all know that the presents will be PJs but Mom & Dad always try to convince us that maybe this year it will be different....and it never is. :) One year they stuffed all the PJs into paper towel rolls before wrapping them so we would think that it couldn't be pajamas. But it was. After we find the presents we change into our new PJs and take a picture.

We always set out cookies for Santa and he always eats some and leaves a nice note.

Christmas morning we aren't allowed up before 7am. That used to be a problem for me, but now I'm dragging myself out of bed at 7:02am. We all rush up to get our stockings and while we're unpacking the delightful gifts, Mom starts getting the turkey ready. The smell of sausage and onions sizzling on the stove makes you a little queasy that early in the morning. We help break the bread for the stuffing as we're sneaking peeks into the living room where all the presents are. Whoever finds the Christmas pickle ornament on the tree gets a present.

We usually all eat mini-cereal boxes and mandarin oranges for breakfast and once Mom has the turkey in we go to unwrap presents. We each stake out a spot in the living room and take turns opening the gifts one at a time. It's nice that way because we can all see what others have received and can appreciate all the gifts. We spend the rest of the day enjoying our gifts, watching movies, reading books, playing games and we have a great feast in the late afternoon. It's usually turkey, stuffing, mashed potatoes, gravy, buns, turnips, salads and banana slush with ginger ale to drink. Mom makes lots of pies and baked goods to eat for dessert.

When we were kids we would take all our presents and arrange them and take a picture of the haul. These pictures have actually helped resolve disputes over movie ownership.

Dad always starts the huge crossword puzzle found in the Edmonton Journal and we all sit around, wishing we hadn't eaten so much.


Boxing Day is usually spent at Aunt Sheila's acreage at South Cooking Lake where everyone gathers to eat, talk, do Dad's crossword puzzle and play games. It's always lots of fun. Ryan has started his own Christmas tradition where he likes to peruse Boxing day sales. That's where this came from:
Christmas is my favourite holiday because it lasts a whole month!

To kick off the Christmas season...both Ryan and I are sick. Just miserable sick with sore throat, cough, runny nose and general irritability. Not sick enough to put us out of commission but just enough to be super annoying! I'm hoping that by some miracle the girls won't get it, but it seems bound to happen.

It's been a busy while since we returned from our trip. Since we got back on a Sunday night it was straight back to action in the morning. That first week was a shock to the system as both Ryan and I suffered from peeling suntans, fatigue and extreme Mexico withdrawal. Now we're back on schedule and it almost seems like a dream that we were ever there! Good things we have pictures as evidence.



I am a Twilight fan and I will readily admit it. I was hooked on the books and read them super fast. I was excited for the movie to come out and I have to say...what's not to like? It wasn't as good as the book (movies never seem to be) and some of the parts were cheesy, but I enjoyed it. A lot of people I know were critical of it, but I liked it.

I've been busy trying to get Christmas things done so that once Ryan is done school, we can just do fun family things together. I love teaching piano lessons ,even though I only have one student - she is so much fun! I got asked by my best friend Kathy to be the matron (a.k.a. "old lady"!) of honour at her wedding in August and I'm so excited! It's my first time being in a wedding party and I think it will be a great experience. I've also been occupied by Super Saturday craft days, making our 2009 family calendars on our Mac, slacking at exercise and sorting out various tenant issues in our building.

This seems to be the busiest time of year for me in my church calling - ward music chairperson. I get to organize musical numbers all through December, our ward number for the Stake Christmas concert and the program for the Christmas Sunday sacrament meeting. This can get tricky in our ward because there are a lot of students who visit family over the holiday break and so my numbers to choose from get smaller and smaller. I finally have everything figured out and all the musical numbers underway so now I just have to practice and hope for the best. It always turns out in the end.


At our ward Christmas dinner we enjoyed some great food and had another Santa experience. I thought Madeline would be into it, but again she freaked out. She softened for a second when Santa handed her a candy cane but it was short-lived.

Claire's been busy with GRIT. She's getting very good at hitting her Big Mac switch so we're trying to get her to use it to communicate with us. Right now we'll put a big yellow ball on her tray and she loves to knock it off and laughs and laughs. But to get it back, she has to press her switch (we can record a short message on the switch so we set it to say "BALL"). We're trying to help her realize cause and effect and maybe start to recognize words. It's so hard to figure out how she is processing things because she doesn't always give signals that are obvious to us. It's been fun to watch her having a blast knocking the ball off the table though!

Claire will also be moving up to Primary at church in a couple weeks so she's had the chance to sit in on closing exercises. I think she will have a great experience in Primary and I hope that we can work together with the teachers to make it positive for everyone. This is another big step for our inclusive goals for her. This week I meet with her teacher from the GRIT program to plan ahead for next year when Claire will probably be attending a preschool a few times a week. I am just so scared to death about this. We will send her with her GRIT worker but I am scared to make the decision of where to send her. Do all parents get this worried or am I just too overprotective?

Madeline has been very entertaining/frustrating lately. She's started to throw tantrums which include screaming and hitting things. She's got a very strong personality but she is also very kind. She loves babies and will run over to a "baby" (even though they may be older than her!) and give them hugs and kisses. She's always taking things over to Claire and trying to share snacks with her. It warms my heart to see the girls playing together. Maddie has some awesome dances moves. She shakes her little hips anytime she hears a beat. Lately she's been getting some arm actions in too and it's so funny. Maddie's been good in nursery for the past few weeks so we hope that the clingy/crying stage is over!

We had fun out in Wetaskiwin today for Dad's birthday celebrations.






*RANT* - Our apartment building is situated behind a hotel/coffee shop/bar conglomerate which share one recycling bin out the back. The bin gets picked up everyday except on the weekends. So by the time Monday morning rolls around, the bin looks like this:Every Monday our parking lot and side yard are covered with boxes, bottles and newspaper. We've contacted the hotel probably 20 times now and they continue to say that they will look into the problem. They also blame our tenants for filling the bin with their "illegal" recycling materials, stating that they can't tell whose garbage is flying onto our property. It's not that it is hard to pick up garbage, it's just infuriating to watch them pile stuff higher and higher all weekend and hear the sound of boxes migrating into our lot all weekend and have to clean it up every Monday because we can't "prove" that the garbage in our lot comes from their bin.

As I'm typing this, I am on the phone with the Bylaw complaint line....and have been waiting on hold for 20 minutes. I find I have such a lack of faith in our community/government/civic systems that I don't even really expect any change from voicing an official complaint, but it will make me feel better.

I hate managing a lot! Except for the free rent and big apartment.

*RANT OVER*

Ryan and I just got back from a week-long trip to Mexico. It's been almost 6 years since we've been away together (last time was...OUR HONEYMOON) so we decided to bite the financial bullet and just go ahead and have a fun trip. I'd like to give a shout out to the folks at VISA who made this trip possible before we actually had the cash. Interest is a major bummer when it's accumulating against you...but it was now or never!

We had a lot of fun together and I don't think Ryan got too sick of being with me 24/7. :) We tried to balance between seeing the sights and having adventures (our first trip to Mexico!) and just relaxing and recharging. I think we had enough time to do both things and we didn't get homesick until the end. There were a lot of things that we saw that made me think "I wish the girls were here with us!" But a lot of the time I was grateful that it was just the two of us. I just realize how hard it is to travel with kids and how it usually isn't a "real" vacation for the parents!

We were lucky that my family was willing and able to look after the girls for us while we were gone. It took two van-loads to get everything out to Wetaskiwin (Claire's equipment sure is bulky!) and they even loaded it all back to our house and had everything back to normal on Sunday when we got home! It was such a blessing to have the girls where I knew they would be loved and kept safe. Madeline now says Mamma & Poppa & Uncle & Auntie and often asks for them!





We also had some great friends look after our building (thanks Jeff & Eva) and siblings who also kept a watch on things (thanks Greg & Steph and Steph and Mel).

I've made a couple of albums on Facebook with pictures and explanations of things so I won't write too much here. If you want to see the pictures, here are the links:

Mexico Album 1
Mexico Album 2


Experiences in Mexico:

• That a "loose woman" in Spanish is called mamacita

• That going topless on the beach is a European thing

• That smoking is also a European thing (we probably smoked about a pack each in second hand smoke!)

• That a LOT of European people travel to Mexico (at least this time of year)
  

• That street shop bargaining is kind of fun

• That tipping is an art

• That what people read on the beach can tell you a lot about their personalities

• That you CAN get a sunburn on your earlobes

• That Mexican TV is hilarious

• That the Quebec French accent is quite horrific (Ryan's sentiment)

• That Ryan is a pool shark

• That highways in Mexico have huge speed bumps and no real lane divisions

• That snorkeling is super fun but then you have "suction cup face" afterwards

• That the stress and fatigue from the day of traveling home almost erases all the relaxing done on the beach!

Cool things we saw:

• 2 different rays, a lobster, HUGE dark purple sea urchins, tiny red sea urchins, little swordfish, tons of bright coloured tropical fish (while snorkeling)

• A wedding on the beach at sunset - we were out in the water at the time and watched the bride walk down the aisle. Very romantic

• Beautiful sunsets

• The most hilarious night show ever where these Mexican kids danced to songs from Grease, Saturday Night Fever and Evita whilst lip synching

• Fun towel designs on our bed everyday

• Banana, coconut, aloe vera and chile pepper trees/plants

• The "bidet" statue/fountain (see Mexico Album 2 for pictures)

• Tons of huge lizards everywhere

• Vultures circling overhead as we walked through the jungle (not a very encouraging sight

All in all, this trip was a great break for us but we are glad to be home and I am excitedly preparing for Christmas! My policy is that we have to wait for December 1st to put up the tree and decorations and start up the Christmas music! That way you are not sick of it all by the time Christmas day comes around.