For the first time in this Ellie journey, I am absolutely raging mad. RAGING.
I've been meaning to call the ENT office, because they told me at our last appointment (both the doctor and the secretary) that Ellie would be scheduled for surgery at the beginning of January, and that if I hadn't heard back by mid-November, that I should call.
I just called. The receptionist told me "there is no way she's going to be booked in for January, probably not until March at the very earliest" Blah, blah, blah, two surgerical days in January, blah, blah, blah, high priority cases, blah, blah, blah, waiting lists....
I COULD JUST SCREAM!!!
The audiologist told me that if they couldn't do her surgery, Ellie needed hearing aids. Her hearing impairment is affecting her development. But, can I get her in to be fitted in the mean time? NO. No openings until SPRING.
What the hell am I supposed to do with that?? Ellie NEEDS to be able to hear. She's going to be facing enough issues developing her speech as it is with her PWS diagnosis, don't you think it's important that this VERY repairable issue be fixed?!
I asked to be put on the cancellation list, and was told that because Ellie needs to stay the night in ICU, there is NO chance of her being able to claim a cancelled spot. No chance.
So we have to wait until March, or probably even later, because the biotch on the other end of the line said "I can absolutely not guarantee she'll get in by then" for Ellie to be fixed.
RAWR.
Wednesday, November 28, 2012
Wednesday, November 21, 2012
Creme Brulee Pie and Pavlova
This morning, a friend of mine posted that they were going to make creme brulee today. As soon as I saw those two words, creme brulee, it's all I could think of!
To make matters worse, people are preparing for American Thanksgiving, and everywhere I looked there were people talking about pies.
Creme brulee + pies = creme brulee pie??
OH YES!
The recipe, which I found here calls for 7 egg yolks... that leaves 7 egg whites. What to do? Make something healthy, like an egg white omlette? HAHAHA...no.
I made a pavlova. Whipped the eggs til stiff, added about a cup of superfine sugar, whipped til glossy, added 2 tsps corn starch, and 2tsps vinegar. Baked at 250F for a couple hours. I intend on freezing the rest (you know, the part that isn't already in my belly!), and will serve it eventually with whipped cream and berries.
Yum!
To make matters worse, people are preparing for American Thanksgiving, and everywhere I looked there were people talking about pies.
Creme brulee + pies = creme brulee pie??
OH YES!
I made a pavlova. Whipped the eggs til stiff, added about a cup of superfine sugar, whipped til glossy, added 2 tsps corn starch, and 2tsps vinegar. Baked at 250F for a couple hours. I intend on freezing the rest (you know, the part that isn't already in my belly!), and will serve it eventually with whipped cream and berries.
The difference a year makes...
This was November 20th, 2011. Exactly a year ago.
Wasn't she tiny? I remember that day. We went to the museum of natural history, and Ellie was awake the whole time we were there. I remember, because it was SUCH a big deal to me that she was awake. She was 9lbs, still between preemie and newborn clothes. She couldn't sit up, or roll over, or really do anything but snuggle.
Today, she's so different!
We trekked into Vancouver for her RSV clinic appointment. We are very lucky that she qualified this year, I know many kids who didn't. The lovely nurse weighed her, and I nearly keeled over with shock. Ellie weighs SEVENTEEN pounds!!! Our goal at the last endocrine appointment was to get her to 16lbs, because Ellie had been at 13 pounds for months.
The only thing that's changed is an increase in the amount of protein we give her. They didn't measure her, but I know she's grown more than they expected, based only on how she seems to be busting out of 6 month clothes. We are almost ready to bring out the 9 month gear!
I think we have an endo appointment in December, so we'll see how that goes when we get there. We still have a sleep study to deal with after Christmas, and we're still waiting on her surgery booking for January.
We popped in to say hello to the PICU people. Ah, it warms my heart how much they love her, and how much they gush at the progress she's making. Also SOOO glad to just be visiting, I don't want to go back for real!
Today, she's so different!
We trekked into Vancouver for her RSV clinic appointment. We are very lucky that she qualified this year, I know many kids who didn't. The lovely nurse weighed her, and I nearly keeled over with shock. Ellie weighs SEVENTEEN pounds!!! Our goal at the last endocrine appointment was to get her to 16lbs, because Ellie had been at 13 pounds for months.
The only thing that's changed is an increase in the amount of protein we give her. They didn't measure her, but I know she's grown more than they expected, based only on how she seems to be busting out of 6 month clothes. We are almost ready to bring out the 9 month gear!
I think we have an endo appointment in December, so we'll see how that goes when we get there. We still have a sleep study to deal with after Christmas, and we're still waiting on her surgery booking for January.
We popped in to say hello to the PICU people. Ah, it warms my heart how much they love her, and how much they gush at the progress she's making. Also SOOO glad to just be visiting, I don't want to go back for real!
Sunday, November 18, 2012
Renos
We have a plan and we have a timeline!! We are lucky to have tradespeople in the family, so our crappy shower plumbing set-up will be fixed by BIL and I can get advice on carpentry questions from dh's grandpa.
We are going to install the backer board after the plumbing is fixed and the shower base is replaced. We will mud and tape, and then apply a waterproof membrane to the walls and flooring underlay.
We have someone coming in to do the tiling, because I don't want to argue with DH about it, and my OCD would mean I would spend a whole day making sure everything was perfectly in line.
We bought the white subway tiles for the shower, to be paired with white grout. I found my floor tiles at Rona (yay!) and they'll go with grey grout. Bought a new toilet and my lovely new vanity and mirror. Also bought Martha Stewart bath accessories and what I need to bead board panelling, chair rail and baseboards!
Everything should be done by the 15th of December!
Will post photos of everything as we go. Sadly, our camera is out of commission... Thanks, Jakob.
:)
We are going to install the backer board after the plumbing is fixed and the shower base is replaced. We will mud and tape, and then apply a waterproof membrane to the walls and flooring underlay.
We have someone coming in to do the tiling, because I don't want to argue with DH about it, and my OCD would mean I would spend a whole day making sure everything was perfectly in line.
We bought the white subway tiles for the shower, to be paired with white grout. I found my floor tiles at Rona (yay!) and they'll go with grey grout. Bought a new toilet and my lovely new vanity and mirror. Also bought Martha Stewart bath accessories and what I need to bead board panelling, chair rail and baseboards!
Everything should be done by the 15th of December!
Will post photos of everything as we go. Sadly, our camera is out of commission... Thanks, Jakob.
:)
Wednesday, November 14, 2012
Comfort food
For reasons not acceptable to be discussed online, I have been rather grumpy of late. When I am feeling like this, the one thing that makes me really happy is creating in the kitchen. That, and cleaning until everything sparkles.
Today, decided on comfort food, so I am making slow-cooker pulled pork (two pork loins, a mini can of coke, and BBQ sauce, set on low for 6-8 hours) and fancy Mac 'n cheese. For dessert, I made chocolate banana muffins.
The macaroni involves a number of steps, and the more steps, the more therapeutic.
Two onions, sliced thinly, and fried (slowly!) in butter until caramelized.
Half a pack bacon, fried, with the grease reserved, chopped and set aside.
Boil the noodles for half the time indicated on the box. I like whole wheat pasta. Drain.
In the noodle pot, melt a quarter cup butter, add the bacon grease. Whisk in 1/4 c flour, and cook for a minute, stirring constantly. Add 2 cups milk, and cook until thickened. Add two eggs and beat well. Mix in cheese. I used a couple cups shredded cheddar, Parmesan, and about a cup cottage cheese. Add the bacon and onions, mix well. Add the macaroni!
Pour into a greased baking dish, and bake at 350f for 20 minutes, or until bubbling.
Muffins... I didn't really measure. Two overripe bananas (I keep them in the freezer if we don't eat them in time), 1/2 c sugar, 1/4 c cocoa powder, 1tsp baking soda, 1 egg, 1 cup flour, and a tsp of vanilla. Mix it all up and spoon into lined muffin tin. Bake at 350f for 20 min.
Today, decided on comfort food, so I am making slow-cooker pulled pork (two pork loins, a mini can of coke, and BBQ sauce, set on low for 6-8 hours) and fancy Mac 'n cheese. For dessert, I made chocolate banana muffins.
The macaroni involves a number of steps, and the more steps, the more therapeutic.
 |
| Slow-Cooker doing its thing while the bacon sizzles |
Two onions, sliced thinly, and fried (slowly!) in butter until caramelized.
Half a pack bacon, fried, with the grease reserved, chopped and set aside.
Boil the noodles for half the time indicated on the box. I like whole wheat pasta. Drain.
In the noodle pot, melt a quarter cup butter, add the bacon grease. Whisk in 1/4 c flour, and cook for a minute, stirring constantly. Add 2 cups milk, and cook until thickened. Add two eggs and beat well. Mix in cheese. I used a couple cups shredded cheddar, Parmesan, and about a cup cottage cheese. Add the bacon and onions, mix well. Add the macaroni!
Pour into a greased baking dish, and bake at 350f for 20 minutes, or until bubbling.
 |
| Yum. |
Muffins... I didn't really measure. Two overripe bananas (I keep them in the freezer if we don't eat them in time), 1/2 c sugar, 1/4 c cocoa powder, 1tsp baking soda, 1 egg, 1 cup flour, and a tsp of vanilla. Mix it all up and spoon into lined muffin tin. Bake at 350f for 20 min.
 |
| Between the kids and I, there are four left... |
Monday, November 12, 2012
Fall cooking
I made a super easy chicken-bean-potato casserole tonight for dinner. Great-grandpa came by with a few jars of his canned green beans (which I LOVE), so I threw one drained can into a pyrex dish with three chicken breasts, and half a bag of mini potatoes, and one chopped up onion. Sprinkled 3 tbsp olive oil over, and topped with Italian seasoning. Baked at 350F for an hour. Yum!
On the stove, I have my trusty slow-cooker making Jambalaya. This recipe is a winging it version, with two chopped up chicken breasts, two chopped up brat sausages, a large can of tomatoes, one green pepper, three celery stalks, an onion, some garlic, a cup of chicken stock and chipotle spices. When it hits an hour left, I will throw in a cup of wild rice. At five minutes to finish, I will add in a bunch of shrimp. Another YUM!
We have a ton of apples to do something with, so I made a huge pot of apple-cinnamon oatmeal, and I'm baking a braided apple pie.
On the stove, I have my trusty slow-cooker making Jambalaya. This recipe is a winging it version, with two chopped up chicken breasts, two chopped up brat sausages, a large can of tomatoes, one green pepper, three celery stalks, an onion, some garlic, a cup of chicken stock and chipotle spices. When it hits an hour left, I will throw in a cup of wild rice. At five minutes to finish, I will add in a bunch of shrimp. Another YUM!
We have a ton of apples to do something with, so I made a huge pot of apple-cinnamon oatmeal, and I'm baking a braided apple pie.
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| Organic apples from the Okanagan! |
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| Chopped for Oatmeal |
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| Cook with water until softened |
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Add oats and cook. Don't burn the bottom of the pan like I did... |
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| More apples! Tossed with sugar, cinnamon and lemon juice, and baked for 10 min at 350F |
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| Put cooked apples on cut pie dough |
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| Pause for a photo with cute baby |
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| Feed said baby oatmeal! |
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| Bake braided pie for 20 minutes at 350F |
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| Serve with caramel sauce... or don't! (You might not be able to stop eating it!) |
Saturday, November 10, 2012
Never DIY with renos unless you know what you're doing!
My bathroom is gutted. I cannot tell you the number of time we both looked at eachother and simulatenously said "WTF?!".
There is a huge hole in the ceiling. HUGE, like 4x4 feet. It was masked by some decorative plastic backsplash. WHY is there a hole in the ceiling??
Instead of making a hole large enough to pass an extension cord through, they cut the outlet end of the cord off, and taped it back together, inside our vanity, where any leak of the sink would surly have electrocuted us. It was wired in to a non GFI outlet. Lovely.
They covered half the shower in a waterproof membrane. It wasn't placed to drain into the shower basin like it was supposed to, it drained right into the drywall. Lovely.
The grout wasn't mixed properly. They used the wrong adhesive.
They didn't grout behind the toilet.
They didn't replace the toilet O-ring when they replaced the toilet.
There are three levels different levels of plywood on the floor.
It is a miracle the in-floor heating system didn't light our house on fire.
They glued the mirror to the wall using something that looks like tar.
Ah...
At least it's all out. We are letting the dust settle (literally), and then are going to wash it out, bring our plumber in to look at the plumbing (the shower is leaking, even though the water is off), and have DH's grandpa assess the damage to the woodwork. He'll do the carpentry, hopefully put our ceiling back together, spackle, we'll put the shower base back in, put the shower backing back together properly, finish the other walls, install the panelling, have our talented tiling friend come in for the shower tiling and flooring, put the glass back in for the shower, bring in the toilet, vanity, mirror, and hopefully be done.
Properly, this time.
There is a huge hole in the ceiling. HUGE, like 4x4 feet. It was masked by some decorative plastic backsplash. WHY is there a hole in the ceiling??
Instead of making a hole large enough to pass an extension cord through, they cut the outlet end of the cord off, and taped it back together, inside our vanity, where any leak of the sink would surly have electrocuted us. It was wired in to a non GFI outlet. Lovely.
They covered half the shower in a waterproof membrane. It wasn't placed to drain into the shower basin like it was supposed to, it drained right into the drywall. Lovely.
The grout wasn't mixed properly. They used the wrong adhesive.
They didn't grout behind the toilet.
They didn't replace the toilet O-ring when they replaced the toilet.
There are three levels different levels of plywood on the floor.
It is a miracle the in-floor heating system didn't light our house on fire.
They glued the mirror to the wall using something that looks like tar.
Ah...
At least it's all out. We are letting the dust settle (literally), and then are going to wash it out, bring our plumber in to look at the plumbing (the shower is leaking, even though the water is off), and have DH's grandpa assess the damage to the woodwork. He'll do the carpentry, hopefully put our ceiling back together, spackle, we'll put the shower base back in, put the shower backing back together properly, finish the other walls, install the panelling, have our talented tiling friend come in for the shower tiling and flooring, put the glass back in for the shower, bring in the toilet, vanity, mirror, and hopefully be done.
Properly, this time.
Friday, November 9, 2012
Thursday, November 8, 2012
Baking and Renos
Tonight we're celebrating two family members' birthdays, so I've been baking since 8am! I have just finished a St. Honore for my dad, and a tuxedo truffle cake for my brother. For the St. Honore, I used a slightly different version of the recipe I used a couple weeks ago, and this time I didn't burn the caramel (although I did burn myself - OUCH!)
My brother likes tuxedo cake. Heck, I LOVE tuxedo cake! It was what we had as our wedding cake, and I had no idea it would be easy to make. Marble cake slab, chocolate mousse, white chocolate mousse, and a chocolate ganache. Yum! What I didn't count on was for how HUGE it turned out. My word, it's a massive cake.
In other news, we discovered a leak from our upstairs bathroom, and so now we're in the throws of renovating a poorly done DIY that we inherited from the previous owners. We're taking the opportunity, in spite of wanting to sell this place, to do it right, and put in a nice looking, up to code bathroom.
This is our inspiration:
We found the vanity they used at Home Depot:
This is the flooring we're using, it's from Rona:
Monday, November 5, 2012
Saturday, November 3, 2012
Breakfast Pizza
Yesterday, a wicked someone pointed me in the direction of punchfork.com an INCREDIBLE food/recipe resource. It took me about three nanoseconds to become completely hooked.
For tomorrow's breakfast, I am making Breakfast Pizza
(Apologies for the crappy photos. I was cooking in my dark kitchen, with only my iPod as a camera)
My mixer is in storage, so I used my KitchenAid food processor to make the dough. Following the recipe, it said make it the night before, so I did... in the future, I will just make my dough the day of. I have a great pizza dough recipe (actually, the pizza yeast container has a great recipe) which has never failed me. I'm not sure if it's because I wasn't using a conventional mixer, but dough was not forming when I followed the water/yeast/flour ratio provided. I added a couple tablespoons of olive oil, and some extra water. I also don't have a pizza stone, and 500F in my oven would burn everything to a crisp. I preheated my oven to 425F, and baked the pizza(s) for 12-15 minutes until the crust was golden and the cheese was melted.
For tomorrow's breakfast, I am making Breakfast Pizza
(Apologies for the crappy photos. I was cooking in my dark kitchen, with only my iPod as a camera)
My mixer is in storage, so I used my KitchenAid food processor to make the dough. Following the recipe, it said make it the night before, so I did... in the future, I will just make my dough the day of. I have a great pizza dough recipe (actually, the pizza yeast container has a great recipe) which has never failed me. I'm not sure if it's because I wasn't using a conventional mixer, but dough was not forming when I followed the water/yeast/flour ratio provided. I added a couple tablespoons of olive oil, and some extra water. I also don't have a pizza stone, and 500F in my oven would burn everything to a crisp. I preheated my oven to 425F, and baked the pizza(s) for 12-15 minutes until the crust was golden and the cheese was melted.
 - |
| Yeast proofing |
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| Mix, mix, mix |
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| DOUGH! |
 |
| Frying bacon and onions |
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| Add mozza, parsley, salt and pepper. Top with bacon and onions, and crack three eggs on top! |
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| Soooo good! |
Friday, November 2, 2012
Another angel
Yesterday, one of Ellie's NICU friends passed away. The day before, her mom had posted about all the amazing progress that Erin was making. Just like that, a little life got snuffed out, much, much too soon. Her mom was one of the first people I met when Ellie was born. She was such an inspiration, and a testament to the dedication of NICU parent, having been in the hospital for months, away from her other kids and family in their home town up north.
When I heard that Erin had been intubated, and was being rushed to Children's, my heart sank. When I saw that she passed away, I was absolutely devastated.
At Ellie's ENT appointment this week (where they determined she needs surgery on her ears in January), I saw a family that I recognized based only on the father's voice. They had been in the bed beside Ellie in the ICU, when their son was diagnosed with cancer. I wrote about them before, how inspiring it was to see parents put aside their own fear, their negative emotions, and just beam positivity at their child. The little boy was unrecognizable to me. He lost all his hair, he was puffy, he looked so tired being wheeled in his stroller.
This is something "normal" parents rarely experience; the loss of a friend's child. In the NICU, or in the ICU you make friends with parents whose children have rare conditions, brutal diseases, whose futures are unclear. In the past couple months two babies that were born around the same time as Ellie, kids I've seen for weeks upon weeks of shared hospital time, have passed away. In the 18 months since Ellie was born, I know more children who have died than adults. It doesn't make sense. It isn't fair.
I am thankful every single day that Ellie and Jakob are healthy. I am putting everything I can into hoping for a cure for Ellie's hunger, so that in the future, when she's mobile and food-seeking, it no longer looms as a life-threatening cloud hovering over her.
Sigh.
Rest in peace, sweet little Erin. You were such a fighter. I will always remember your little laugh.
When I heard that Erin had been intubated, and was being rushed to Children's, my heart sank. When I saw that she passed away, I was absolutely devastated.
At Ellie's ENT appointment this week (where they determined she needs surgery on her ears in January), I saw a family that I recognized based only on the father's voice. They had been in the bed beside Ellie in the ICU, when their son was diagnosed with cancer. I wrote about them before, how inspiring it was to see parents put aside their own fear, their negative emotions, and just beam positivity at their child. The little boy was unrecognizable to me. He lost all his hair, he was puffy, he looked so tired being wheeled in his stroller.
This is something "normal" parents rarely experience; the loss of a friend's child. In the NICU, or in the ICU you make friends with parents whose children have rare conditions, brutal diseases, whose futures are unclear. In the past couple months two babies that were born around the same time as Ellie, kids I've seen for weeks upon weeks of shared hospital time, have passed away. In the 18 months since Ellie was born, I know more children who have died than adults. It doesn't make sense. It isn't fair.
I am thankful every single day that Ellie and Jakob are healthy. I am putting everything I can into hoping for a cure for Ellie's hunger, so that in the future, when she's mobile and food-seeking, it no longer looms as a life-threatening cloud hovering over her.
Sigh.
Rest in peace, sweet little Erin. You were such a fighter. I will always remember your little laugh.
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