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So another childhood dream (for me) was fulfilled this week. My mom and I brought Claire and Madeline to a Charlotte Diamond concert. I listened to her music when I was growing up and recently have introduced it to the girls. When I saw on her website that she was coming to Edmonton, we made sure to get tickets. I was totally geeking out about the whole situation. Who would have thought that I would be in my twenties before seeing the likes of Sharon (no Lois) and Bram, Fred Penner and now Charlotte Diamond. Is Raffi still doing concerts? If so I should probably see him too.

10 Carrot Diamond Poster


Eagerly awaiting the concert.


I wanted a picture with Miss Claire and it only took about 15 attempts!


Front row seats. Thanks Claire! But honestly, wheelchair seating is always a gamble. You're either right in the front or way in the back. There doesn't seem to be much in between.


Yay for Charlotte!


Some anticipatory news to share. SONIC BOOM. We're going. We're going to have fun. WEEZER!

We (and when I say "we" I mean Ryan) have begun the Battle of the Lawn. So far, so good. Power raked (Thanks Trevor!), mowed, fertilized, watered and now a couple days of rain. It's all very promising. Updates to follow.

Also, we are hoping to build a small (but epic) deck off the dining room and are excited about the prospect. Again, updates to follow.

Maybe I should only blog about things that have actually happened instead of what will happen. Otherwise I won't have anything to write about in the future.

Claire's new wheelchair is in the works. The frame will be expanded, a new seat insert, lowered footrests, bigger wheels, etc. They're going to situate the seat so she'll be able to start pushing her wheels (a.k.a. self propulsion) someday. Luckily we have pretty good programs to help cover the costs. It's just a lot of paperwork.

We've had a few other comings and goings this past little while. We had our last CNIB music therapy class and are looking forward to the fun Spring/Summer activities that the CNIB always provides for the kids. I attended an Inclusion For Life workshop at GRIT which was quite encouraging. Two parents of older children who have taken the inclusion route spoke about their experiences and challenges and triumphs with their children who have disabilities. It's always good to hear that other people have done it and survived and been successful overall. Ryan just took part in an Etiquette Night with the youth at church where they had a fancy dinner and lessons on manners. He and his "boys" (as Maddie calls them) made a video of how NOT to act on dates, at dinner, etc. to show at the gala. It was quite funny. Also, another Parents Association Meeting for me. It's fun to be on a board like that.

Also, as a side note, you know you're getting old when your university calls you to ask for donations as an alumni. That happened to both Ryan and I this week.

Roaches, FOXG1, celebrity look-a-likes, a mugging and backwards clothing

As usual, we've had a lot going on these past few weeks. Here are some highlights:

(just a reminder - click on the pictures to enlarge them)

Madeline has been decreed as a Suri Cruise look-a-like. We've had at least 5 random people stop us at the park and on walks to tell us that she looks like a famous baby. I think Suri is about a year older than Maddie but they do look kind of similar. Maybe we should take advantage of this and turn her into a celebrity baby impersonator. Judge for yourself. (Too bad I don't look like Katie Holmes!)

Madeline "Suri" Layton

Suri Cruise (Tom Cruise and Katie Holmes' daughter)

Claire's new hairstyle really suits her! It took a tag team of stylists (Grandma and Auntie Natalie) to sort through the dreadlocks but Claire looks so much cuter and it's so much easier to manage.

Here's our first attempt at a double bath. Madeline got kicked a few good times by Claire and Claire got buckets of water dumped on her - but I think they both had fun!

Madeline enjoying Claire's collection of stuffed animals....and her soother. I know I should be getting rid of it soon, but I don't have the emotional fortitude to put us all through that stress right now!

Ah....chocolate pudding snacks.

Daddy and Claire playing on the floor. Claire is really holding herself up well on the floor and is even lifting her bum up every once and awhile. First steps to crawling!


Our biggest disaster of the month was that our building got cockroaches! You heard me right. The tenants directly above us two floors up brought a sample of the bugs down so we could call the fumigator and they were cockroaches. So since we're below them and they waited for so long to tell us about it, we saw a couple in our suite and so it had to get sprayed. Luckily my family helped us out by having the girls at their place for nearly a week while we dealt with moving all our furniture and taking everything out of our closets and then having to clean and replace everything. It was SO stressful but they didn't find any more bugs in our suite besides the two we originally saw, so they don't have to spray here a second time. Phew. Here are some pictures of our packed up house.



Ryan built a retaining wall flower bed for my parents with the help of Melanie's muscles, Robbie's tamping abilities and my and the girls' supervisory techniques. It looks awesome!

Cheese supreme.

Claire really enjoyed her time at Grandma and Grandpa's - I don't think she wanted to come back home!

Madeline has recently discovered that she loves playing the piano. I'm just waiting for the day when I leave her for a minute and then come back to find her standing on top of the piano.
In other news...

In a hurry and late for a big Relief Society activity, I wore my shirt backwards for the entire night without noticing. It wasn't horrible - it was just the black shirt I wore under my patterned shirt for layering purposes but boy I felt stupid when I got home and realized. Curse you tagless t-shirts! It made me realize that I should actually look in the mirror before leaving the house. Lesson learned.

Ryan ran to Mac's late at night to buy some pop and almost got robbed by three guys. When they asked for change to distract him, they tried to knock his wallet out of his hands but then gave up when it didn't work. One more reason why we should maybe take some kung-fu lessons if we are going to live here for much longer.

We finally got Claire's mini Lite Box in the mail. We ordered it a long time ago but it took awhile to work out the ordering red tape. A Lite Box is a visual enhancement tool that's basically a tracing table with a bright light. The accessories are the most important part - there are coloured shapes, spin patterns, coloured backgrounds, etc. She responds so well to it that I think it will be a great teaching tool for her.

Another very important piece of information was that we have a diagnosis for Claire. Dr. Bolduc at the Glenrose and U of A hospitals came here to specialize in diagnosing kids who had no diagnosis and Claire was on his list. They did a gene karyotype and found a deletion on her 14th chromosome. Within that deletion is a missing gene named FOXG1. We are in the process of doing tests on Ryan and I to see if we are carriers of the missing gene or if it happened after conception. It's kind of a scary time but it's good to have some answers finally. The only information he could find on this diagnosis were very recent and very limited. That means we don't have a lot of information on what might come later on but it isn't a regressive disease - it won't get worse over time. It's just something she will always have to deal with. It's a little scary reading the papers he gave us because the outlook seems quite bleak based on the two Italian kids they are writing about. Their situation is different because the two kids have the gene but it is mutated. I guess that can be worse than it being missing because the mutated genes can then affect surrounding genes. I really need to go take a genetic research class so I can understand this all better. Claire is teaching us a lot!

We're also really enjoying Claire's programming everyday. Claire's already worn out one developmental specialist (she has knee problems and has been having troubles lifting Claire) so we're doing a switcheroo and getting a new lady. It's frustrating to have to go through all the introductions and instructions again with a second person, but I think it will be best for Claire.

What a blabbermouth I am. I had better stop for now.

A whole month has come and gone!

I've been a very lazy blogger lately. It's been almost a month since my last post. Even now I am doing this entry too late but I couldn't let it go another day!

Since I last posted:
-Ryan has prepared for and begun his new school year (Again, as the only adult male in the whole school and teaching grade 5 French immersion)
-We've prayed and fasted for Grandma and Grandpa and are sending our prayers and love long distance
-Claire has had a week of her PUF programming in the GRIT program and it's been a great start (Cheryl works with Claire 3 hours a day, 5 days a week. We have lots of outings, play groups, library groups, etc. and lots of goals to work on at home. It's going to get Claire whipped into shape for when we do preschool next year!)
-I've had my first adventure at the cannery in Sherwood Park (I love that place! What nice people and a great program.)
-We've had an apartment flood (it happened above Greg and Stephanie's suite! They have been so patient during the repairs. They're almost done!)
-I've kept up my exercising at Curves three times a week (It's a great boost for energy and strength. Next step - nutrition goals. 1. No eating after 7:30pm. 2. Portion control.)
-I've started teaching piano lessons for the first time (It's great! My little student is very energetic and easy to teach.)
-We had a great long weekend at Wetaskiwin and various other day activities while trying to maximize Ryan's last days of freedom before school!
-We had great fun at Christopher Dick's 2nd birthday party!
-We've come a step closer to finding a diagnosis for Claire's disabilities. (Her neurologist at the Glenrose, Dr. Bolduc, discovered a deletion on her 14th chromosome. He has only found 2 papers published on the subject and they were just written this summer. It's a fairly new entity. We meet with him this Tuesday to get more information.)
-We also got some informal family pictures taken by Val Brandham and her awesome camera. Out of about 300 pictures we managed to squeak out a few good ones where we look relatively normal! Here are some of our favourite ones:













Here's the gang enjoying the fall weather at Lion's Park in St. Albert for the birthday party.

Here's one of our Scrabble boards. Ryan and I like to challenge each other and also like to take pictures of each finished board. This round we used everything except the "Z."

Hopefully I will be able to keep up more diligently in order to record the comings and goings of our lives.

Lots and lots and lots

I'll start out this blog by killing two tags with one stone. Ages ago Brenna tagged me to write 7 interesting things about myself and Karen just tagged me to write 7 quirks I have so I'll do them both at once:

1. I am totally squeamish when it comes to veins and needles. I can handle lots of other stuff but even right now as I'm typing, my hands are resting on the keyboard tray and I am painfully aware of the bulging veins on the inside of my wrists and it grosses me out. I can't have anyone touch my wrists because it freaks me out. Weird, I know.

2. I love doing laundry and loading the dishwasher, but I hate dealing with putting the clean stuff away.

3. I love to alphabetize things - all our DVDs and CDs are in alphabetical order (and if you saw how many we have you would know it's a big job). It really bugs me when Maddie pulls them all off the shelf and they get mixed up.

4. I have no green thumb - I try my darndest but I seem to kill every green thing that enters this house. They may appear to flourish for a while but it never lasts.

5. I love to read but I always do it too quick - my mind and eyes keep jumping forward to find out what happens next. Sometimes I even start at the bottom right hand corner of a page and read backwards. I often miss important details though and so I like to read books over and over until I have all the info.

6. I am a list maker. I even made a list of what to write for my 7 quirks before I wrote them down. I sometimes even write things on my "To-Do List" that I've already done, just so I can have the satisfaction of crossing them off. Some may feel that is cheating but I don't!

7. Whenever I eat pineapple, my tongue gets really itchy.

8. Because I'm so weird I have to add an extra one - every time I see billboards or brand names or any words when I'm bored...I count, in my mind, how many vowels are in the words and add them up. I would do this at university when I was bored with a lecture. Sometimes I even count rare letters - like x's or z's or q's. It helps me pass the time.

I would love to hear about the quirks/interesting facts about Jenny, Tanis and Sarah - if you have the time!

We've had a busy few weeks. Here's some highlights:

Madeline enjoyed playing with Uncle Robbie's new cymbal. She would run over to it and balance on it. It was pretty funny to watch.

We spent a day at the zoo with other kids from the CNIB and we got to meet lots of "behind the scenes" animals. Here is Madeline chasing the petting zoo animals. She would run from animal to animal, giving them a pat and moving on to the next. She just kept going and going!

I loved watching Claire interact with the animals. She was so gentle and careful and sat very still when she was meeting them. Our guide was so kind to the kids and made sure they each had enough time to explore. Here Claire is meeting a ferrett in the restricted area that only we got to see! We also got to touch a snake, chinchilla, skunk!, bunnies and chickens.
The girls were in heaven.

We also got to meet an armadillo and it was super cool!

Another fun activity put on by the CNIB was a visit to the Build-a-Bear store in West Ed. The ASVI gave the kids $20 each to put towards a furry friend so we had a ball picking out the sounds and accessories. Here is a picture of the lifeless bodies we picked out for the girls.

Here's Claire hugging her bear Sunshine - we picked it out because it was yellow and sparkly and picked a giggling sound for her button.

Madeline was going crazy in the store because there were so many fun things to look at and grab. She loves her Fraidy Cat and how she meows.

Luckily I had the help of Natalie and Robbie or I couldn't have done it.

It takes three of us to handle the two girls! One for each and one for damage control!

One rough part of last week was that we noticed some seizures again during the night. It's a really scary thing because it just seems like Claire isn't really there and we can't get her back for that minute or two until it's done. It was even more of a blow since we haven't noticed any since November and we thought we had things figured out. Now it takes another EEG, another day at the hospital and probably another "wait and see" or "up her meds" solution.

I love to look at pictures of Claire when she's just purely happy - she is never fake about what makes her laugh and what makes her happy. She equally as able to tell us when something scares her or hurts her. I wish I could take those scary times away from her but I'm trusting that Heavenly Father is allowing this to happen for a reason - although I can't see it now.