Saturday, June 30, 2012

Laundry Reno!

Okay, so this is the only photo I can find that even remotely shows what our laundry room looked like before. Don't mind my face in the way! The cabinets were alright, I mean they weren't in bad shape, they just didn't go with anything in the kitchen, at all! The darker colour made the space seem small, and I always wanted to do something to fix up the space, I just didn't know what.

Yesterday, I saw a can of white paint in the back of our van, and I instantly knew what I had to do. So, when the kids were having quiet time, I took down all the cabinet fronts, took off the hardware, washed, primed and painted (three coats). Then when they were dry, I put everything back together. What a huge difference, but it didn't feel finished. So, I went to the hardware store today, bought a few shelf brackets, and new knobs for the doors, and added those. Finished! I'm so happy with the end result. It was so easy!

Friday, June 29, 2012


A few months ago, Ellie was really great with her signing. Then, when we started really focussing on her motor development, the signing regressed to the point of not signing at all.

Today, at breakfast, she started again. "More". At first, DH and I were super excited! We clapped, and we cheered, and were so happy to see her actively communicating. Then, we realized that it actually sucks. I wish we didn't have a sign for "more". Because, when she was done her breakfast, and it was a bigger breakfast than normal (one squeeze pouch, plus a little bowl of apple and strawberry oatmeal), she kept signing "more" and "eat". She signed, and she signed, and she signed. More, more, more, more, eat. She slammed her hands down on her tray, and she shrieked at us.

Ugh. How can something that would normally make us so happy, make us so sad?

Sorry I've been such a downer :(

Thursday, June 28, 2012

Aside from the meds in the morning, and the shots at night, I try my best to downplay Ellie's PWS. I've gotten really good at makings small talk about her size, about her growth, and I'm pretty good at convincing others that she's just a tiny peanut. But then, when I least expect it, everything comes crashing down and it feels like I've been kicked in the gut.
This morning was hard for me, and it was hard for Ellie. Her obsession with food is just so, so strong. I can't even begin to describe to you what it's like, I can barely wrap my mind around it. Today, we went berry picking. It was the third time in a week we've been, and two days back to back. Ellie is extremely bright, especially when it comes to things food related, and she knows that berries in the patch equate to berries in the belly. The past two times, she's been allowed a berry or two while we've been picking. Today, I didn't want to put her in the wagon, while watching Jakob and simultaneously trying to pick as many berries as possible, as quickly as possible. I put her in the sling, and got to work. Two minutes in, she started crying. A minute in to that, she started wailing. I couldn't hear the conversation I was having. I couldn't hear myself think. All I could hear was her crying.
Someone laughed and joked that she just wanted a berry. If only it were that simple. If only one berry would make her happy. One berry in, she would expect another, and another, and her cries, and her sobbing pleas would only get louder and more heart-wrenching. Today, I did not give in.
We hurried to fill one basket, rushed to pay, and sat down for a picnic, right on time with her normal feed. I gave her her regular, calorie counted, lunch, followed by one strawberry. As there always are, every time and without fail, tears and theatrics followed the last bite. She wasn't happy until all the food was away, and it was out of sight. The cries tear at my soul, and I feel like a terrible parent.
Can you imagine never feeling that amazing sensation of being satisfied after eating? Isn't that why we love to eat? Eating is all about the experience of satisfying hunger. I love to enjoy my meals, to stop at just the right time so that I feel thouroughly sated and not overstuffed.
Ellie never, never feels satisfied. All she wants is more. All she feels is hunger.
She is a skinny little munchkin these days, perfectly in the range the doctors want her to be. People *constantly* comment on how small she is, how cute she is, how much she resembles a china doll. People don't believe me when I tell them she's a year, and if they do believe me, they ask me if I am feeding her enough.
For the love of all things good, that is the most hurtful thing to say to someone in my position. It makes me cry to think of how terrible I feel every time I have to stop her from eating, when I have to say enough is enough, and pack it all away. I count every calorie she gets, to make sure she's gaining the perfect amount for her, to keep her healthy, to keep her mind and body growing. I try to increase her intake of lower calorie foods, and only give her tastes of the things that are calorie loaded. My heart is broken at every meal, and I just wish they could make this go away.
I was so upset at lunch yesterday, when she wouldn't stop crying, because she'd inhaled her lunch and was watching us eat. I told DH that I hate her disorder. I hate it. He just laughed at me, and told me not to be so serious.
If I don't take it seriously, we could lose control of this terrible beast. The hunger knows no bounds.
It is hard.

Wednesday, June 27, 2012

More Strawberry Recipes

I can't help it! Strawberries are in season, and they're so delicious.

Today, I made Strawberry Butter:
1/2 cup softened butter, 3 chopped strawberries

Add 2 tablespoons powdered sugar to the softened butter

Add strawberries!


I used the butter wrapper, and cling wrap to store the butter in the fridge
Wrapped, and ready to firm up in the fridge! Can't wait for breakfast tomorrow :)

I also made a Pinterest find, Cheesecake filled Strawberries. They're so easy! You just hull the strawberries, to leave a hollow center. Mix 1/2c powdered sugar into ??... I used half a container of Victoria style cream cheese. Could have been a cup, maybe. I winged it! Add two teaspoons vanilla (or vanilla bean paste), and mix until smooth. Pour into a piping bag, and pipe into the strawberries. Dip them into graham crackers. Easy peasy!

I found that the cream cheese was runny, so I stuck them all into an ice cube tray, and put them in the fridge for half an hour.

Not delicious at all...


My strawberry <3


When nature cooperates, and you have a day like today, it's so nice to be outdoors. Ellie absolutely adores being outside, she loves the grass, the trees, the wind, flowers, pretty much everything about it. We checked out our own little plants in the garden, before we headed of to the river trails for a couple hours of exploring. Jakob walked the WHOLE time! I can't believe how grown up he is!
Our blueberry bushes are bursting with berries!

Jakob's beans are growing, but seem to be being eaten by slugs or snails

One tiny strawberry on my sad little plant
The view point on our trail walk today :)

Fun in the sun

We woke up to a glorious summer morning, and decided to go berry picking, all four of us.
I put Ellie in the sling, Jakob ran around, and DH and l picked 10lbs of strawberries, in practically no time at all.

Amazing, juicy berries

"I think I will just help myself, thanks"
"Om nom nom"

We made a stop in the city, to pick up 3 months of growth hormone, and to have Ellie's bipap settings increased a smidge. She has been snoring, so until we see ENT we are going this route.

I've noticed that Ellie is a mouth breather, and that has developed recently. Here's hoping that ENT can do a t&a, at the same time as ear tubes, and we can create a little more space in her tiny airway!

Tuesday, June 26, 2012

Ruffle Butt

One of the amazing mamas on my due date board makes cloth diapers. She made Ellie two pairs, and I could NOT possibly be any happier with them. They're outstanding!

Check out her shop on Etsy:
or on Facebook:
Pink with Detachable Cupcake Ruffles!

Amazing, one-size fit!

Elephant print, with coordinating brown and pink ruffles!

Time Flies!

Jakob's last day of preschool was today. I can't believe it! I cried... more than once. I can't believe how amazing he is, how much he's grown (physically, as well as emotionally and intellectually!). He sure is awesome. We're looking forward to a summer, full of fun day camps and activities, and then on to fall when preschool starts three days a week!

Saturday, June 23, 2012

One Year

It has been a year since the first time we brought Ellie home. She was so small, tube feeds were terrifying, and it was hard getting up to feed her based on the ringing of an alarm, and not her crying. A year ago, we were a couple weeks in to first hearing about PWS, we were so scared, anticipating the arrival of news that would shape her future.

I didn't know that in the year that would follow, we would spend months more in hospital. I didn't think we would have nurses coming in to our house every night to watch over our baby. I didn't think we would have heart rate and oxygen monitor, a bipap machine, and a suction machine. I didn't think I would have drawers full of medical supplies. I didn't think I would be giving my daughter pills in the morning, and shots at night, or have a sharps bin in my laundry room. I didn't think I would have to worry about the probability surgeries to fix her ears, to remove tonsils and adenoids, or to secure her airway. I couldn't have anticipated any of this.

At the same time, I never could have imagined how incredibly full my heart could be with love for her. I didn't think she would eat on her own, and tonight she ate everything we did. I didn't think she would ever hold up her head, let alone sit, cruise, stand, like she does now. When she came home, she was silent. She didn't cry, she didn't coo, she didn't make a sound. Now, she laughs, she squeals, she babbles, and screeches. She has taught me so, so much in the year since she came home.

I would not trade her for anything, ever.

Friday, June 22, 2012


Today involved a lot of time in the car. We drove out to West Vancouver to check the mail for some friends, then  I took the kids to the aquarium. I am so glad we have a membership, it was soooo crowded we raced our way through the crowds, stopping to admire the bats, butterflies, sharks, turtle and new penguins (adorable!). Ellie has never been, and she was amazed. I love the look on her face when she sees something she thinks is very interesting. You can practically see the wheels turning in that little head of hers.

On the way out, mother nature decided to unleash a torrent of rain upon our heads. Jakob, dressed as Superman (trust me, this is a really, really good way of making sure you can find your child in a crowd!!), threw his cape over his head and said, I'm Superman, I won't get wet.

Ellie was snug as a bug in our Ergo carrier, and threw her head back to feel the rain on her face. I love the rain, it didn't bother me one bit.

Our drive home was long, since I timed it perfectly with Friday rush hour. Ugh... But, we're home now, and it's time for a glass of wine, and snuggling my kids on the couch until DH comes home.

Happy Friday!

Thursday, June 21, 2012

Afternoon Messy Time

I've been looking for an activity to keep both kids entertained in the afternoon. Today I found one for each, and they lend themselves to each other perfectly: finger painting, and water play!

The finger paints were posted on FB by a friend. The recipe probably came from Pinterest.
3 tbsp sugar
1/2 tsp salt
1/2 c corn starch
2 c water
food colouring

The instructions said heat until thicken, let cool, add colour. To get a smooth consistency, it's not quite that simple... Before heating, add the corn starch to the pot, and slowly add 1 c of water, whisking as you go. Corn starch is funny with water, if you go nice and slowly, it will all mix, and you'll get a smooth result!

Add the water slowly, to the corn starch. After it's mixed, add the salt and sugar.

Heat over med-high heat, whisking constantly. First, little flecks of gel will start to appear, keep going, it will thicken up nicely!

Divide into how ever many bowls you want

Add your colours! Jakob decided against pink.

Mix well, I used a chopstick. Let cool!

Paint away!

"It's warm, and slippery, and it smells yummy"
 For little Miss, it was a LOT easier. Put in highchair, strap in, snap on tray, fill tray with warm water. I put a towel down to absorb the flying water. She LOVED this!
Little trouble maker :)

Big splashes! An added bonus, my floor was washed as I cleaned up.

So happy!

New teeth! I finally got a picture.

Wednesday, June 20, 2012

Strawberry Summer

Today, on the first day of summer, I took the kids berry picking. The strawberry fields opened for business yesterday, and let me tell you, there is NOTHING like a freshly picked berry, in all its juicy glory. Mmmmm....

The CTV happened to be filming when we got there, and wee Miss (along with Jakob's "girlfriend") were featured in a spot about summer, for the evening news! That was really exciting.

Sorry about the quality, I only had my phone on me!

I have been working non-stop since we got home, washing, hulling, crushing, chopping, cooking, canning, baking, and freezing.

Today, we made:

 Freezer Jam: No real recipe needed, other than the one on the back of the pectin pack! Sugar, this stuff, and crushed strawberries. The recipe gave exactly enough to fill all five (5) of the freezer jam jars that I picked up on sale at Save-on Foods.

The tiny berries are the tastiest!

This is the pectin I used for the jam, found it in the canning aisle.

The recipe made 5-250ml containers. I gave one to my neighbour :)
Mini Strawberry-Rhubarb Pies:  Ah, Pinterest. Thank you, for bringing amazing recipes into my life. This recipe hails from Not So Humble Pie. What a great idea - mini pies! Not just little, but mini. Absolutely perfect for a tiny dessert. I didn't have lemon, so I substituted in some lime. We don't have any Grand Marnier, so I just used orange juice. Oh, and as the strawberry and rhubarb was cooking, it smelled so good, I decided to add a tablespoon of vanilla bean paste. They are so, so very delicious.

Two-Bite Pies!

Finally a reason to use my mini muffin papers!

Strawberry Popsicles: In making the mini pies, I was left over with a substantial quantity of "syrup". I was going to throw it down the drain, but then I remembered the popsicle molds I bought a while back. I added some crushed strawberries, the syrup, and popped them into the freezer. I'm sure they will be great on a hot summer's day!
**Updated to add: They're awesome. Jakob came home from a fun time at school, and asked for one. We both had one, and they're great! The orange juice goes so well with the strawberries! I'm glad I omitted the booze in the pies!
These remind me of my childhood- we always had homemade popsicles.

Strawberry Chipotle Jam: Let me preface this experience, by telling you that I have never, ever canned ANYTHING before. Canning scares the bejeezus out of me, but I saw this recipe at Cookin' Up Good Times, and it was all I could do not to try it! Oh my word, you have, HAVE to try this recipe. It's the most amazing taste experience. It's sweet, and just as the sweet passes, it finishes with a fiery kick. It is incredible! I intend to pick up a pork roast, throw this in with it in my slow cooker, and have a delicious feast come dinner time.

Found in the Mexican section, I plan to make Chipotle mayo with the leftovers!

The hardest part - the water bath...

I have 8 cans of this amazing stuff!