In Memory of Jillian

 

Tonight, I took the time to sit and remember a special little angel, named Jillian Ruth, who grew her angel wings a year ago today. Her story was so similar to Ellie's, that what she passed I didn't know what to do with myself. I think of her, and her mom, very often. I pray that she's at peace.

Small iPod photo dump!

Ellie's toothy grin makes my heart swell <3

Day trip to Squamish

Happy, even when stuck in the car for a long time.

I'm becoming anxious over Ellie's upcoming sleep study and hospital stay. It's only a week away. This time next week, we will be "checking-in" to the TCU, dropping off her bipap machine, and making our way upstairs for her sleep study.

Ellie hasn't had a formal sleep study done since the one last September, and then we waited a very long time to get the results back. This time, since she's being admitted for planning and assessing, I am under the impression it will move a lot more quickly.

Last time, I tried to sleep while I was there. This time, I fully intend to sleep away most of my Monday, and plan to stay up, with the tech, the whole time. I want to see what they're seeing. I want to see how badly she desaturates, and how long it takes for her to recover. I know it hasn't improved from the fall, and I am so, so nervous for what that will mean for our future.

I don't want Ellie to have to have a tracheostomy put in. I really, desperately want to avoid it. But, if it means keeping her safe, if it means ensuring she can breathe, it is obviously worth it.

Yesterday, we drove up to Squamish to visit our friends. We went for a hike through the forest, out along the river, and settled ourselves on the river bank to enjoy snacks and some drinks. Ellie loved watching the dogs run in and out of the water, splashing all over the place. She loved the feel of sand under her toes, and running through her fingers.

Would we still be able to do things like that? Would we still be able to be outdoors, what about sand? What about water? What about a lot of things...

Then I think, oh, we could just leave her with my parents. But, what about the training? Having a trach isn't just some little thing. It's huge. The training is a big deal. I wouldn't just be able to leave her with whomever is available to watch her. I would have to have a trained person with her all the time.

Would I still be able to work? Would Jason feel comfortable being alone with her? Would my parents, his parents do the training?

There are so many questions.

What happens if they decide not to do a trach. Are we going to spend months in the hospital, dealing with every cold and flu that hits us? How can Jakob have a social life, if we're always worried about Ellie catching something. Is it better to spend a week at the hospital at a time, than to have a trach?

My mind starts spinning all the questions around, and it makes me feel sick. I wish I could just fast-forward to the day they've decided what to do, and we just do it.

My little, beautiful baby girl... what are we going to do?

Want Lunch?

Recently, one of my mommy groups had baby tantrums as photo of the day. Although I almost always participate, this time I chose not to. Why? Because the only time Ellie is EVER upset, ever, is when we take away her dishes, and she doesn’t get to eat anymore.

It is really hard for me to ask for money, especially from friends, when I know they’re struggling. I feel so awkward doing it, but I know that if we raise enough money, we’ll be able to fund a cure, and the actual hard part of my life would become easier.

You know what the hardest part of all of this is? Having Ellie look at me, when she’s eaten all she’s allowed to eat. Her eyes well up with tears, and a painful look crosses her face, as she whimpers. She starts of quietly, tracking the dishes as they disappear into the sink. Maybe she will focus on a crumb, or a seed, and once she’s eaten that, she looks at us. If we’re still eating, she starts signing more, MORE! MORE! MORE! Getting increasingly more aggravated, irritated, angry. She bangs on her tray, and when being angry doesn’t work, she starts to cry the saddest, most heartbreaking, soul-crushing cry you’ve ever heard.

I would do anything to have that stop, to not have to say No. But, giving in to her, when she’s had enough, is only going to cause problems in the long run. So, meal in, and meal out, day in and day out, week after week, we say No.

“I am so sorry, sweet heart, it’s all gone. We’re finished.”

She cries, and I force myself to smile, to pick her up, to cuddle her. To show her she’s okay, and to distract her. Away from the food, she quickly springs back to her happy self, like nothing happened.

It’s so hard. So, I’m going to keep asking you for your money. Your change, your pennies, whatever you can spare, until the day they cure her hunger, until the day geneticists can say “Your child has PWS, but it’s curable!” When that day comes, I’ll take us all out to lunch.

Standing Frame

Ellie's feet finally grew enough to fit the standing frame from physio. She doesn't really like it very much, and I don't blame her, she can't move at all when she's strapped in! It makes me feel claustrophobic for her...

In any case, she needs it to teach her to properly weight bear, evenly through both legs. We have to put her in for 20 minutes in the morning, and 20 in the evening, working up to 30 minutes at a time, eventually. She's a trooper.

Seriously? What are you doing to me??

No, no, no! I don't like this.

Oh, but I like when you take my picture...

Cheese!

Quilts and Yogurt

Hi! It's been a while since I properly posted, and I have a good excuse. Little man is away on holidays, so I've been 100% focused on Ellie. I can't say I like having him away, but I sure am able to get things done that I normally wouldn't be able to, like quilting, and really cooking.

I'm presently working on a quilt for one of my favourite people in the world. It's the biggest quilt I've done this far, when it's finished it will be approximately 40"x55". Normally, I do them 36"x45". I bought the pattern, it's called the Color Block Quilt, by Bijou Lovely. LOVE the pattern, and so far it is coming together nicely. I've been slowly working on it over the past five days, and all that's left is the binding.

 Here's the inspiration:

Here's what I've got so far:

Because my body can't handle too much work, I've been taking it slow, and savouring every step. I am so, so enjoying making it. I have only positive thoughts going through my head when I'm working on it, and it's filled with love. Can't wait to give it away!

Stay tuned for final photos!

***

The other day we were almost out of yogurt, and I had Ellie with me, and I wasn't feeling particularly well, so I didn't want to leave the house. I am OBSESSED with my summer oatmeal breakfast, and was not happy at the thought of starting the next day without it. So, I got onto the internet, and discovered that making yogurt is insanely easy. Seriously, my brother could do it.

I gave it a go, and it was perfect the next morning. The best thing? Two ingredients: milk, and bacteria. No additives, no preservatives, no scientific mumbojumbo that I can't pronounce. Heaven.

So, today, since we were at the end of that batch, I decided to do it again, big scale.

Susie's Fruit-on-the-Bottom Yogurt:

-4 litres milk (I used 2% because Ellie is going to eat it, and she needs the increased milk fat)
-1.5 cups plain yogurt.

- clean containers

 - fruit of your choice

You will only need store bought yogurt once, after that all you need is to save enough as starter for your next batch!

Heat the milk over medium high heat, stirring forever, until the milk reaches 180F. By bringing the milk up to this temperature, it kills off all the bad bacteria, leaving room for the good bacteria you`ll add later.

Stir, stir, stir. If you stop, the milk will probably burn.

 Once it reaches that temperature, remove from heat, and pour into a warmed container. I use my crock pot, because it`s easy to wrap up, and it keeps the heat in nicely. Try to avoid spilling as you transfer from one container to the other. I wasn't careful enough, and splashed some on my foot. It's a good thing Ellie isn't at the repeating stage yet, else she would have learned a new word.

Wish my thermometer had a clip. It's hot holding it in the milk! Don't burn yourself.

Preheat the crock pot with boiling water

Pour into heated container, and wait!

Now, you wait. The milk has to cool to below 120F. For me, it took just under an hour with the quantity of milk I have. The last batch, it took 20 minutes, because I only used 6 cups of milk.

 While you're waiting, you can prepare your containers with fruit. I am a fruit-a-holic, and I also like having several choices in the morning. Today, I've prepped Rainier cherries,  organic nectarines, organic raspberries, blueberries, organic mango, and a Bartlett pear. I LOVE mason jars, but didn't have enough to hold everything, so I used a few freezer jam containers, and a baby food container. Refrigerate!

Aren't they pretty? Doesn't this make you excited about breakfast?!

 When the milk reaches 115F, add in the yogurt starter, mix, and cover the container. Then, wrap it up in a blanket, so that the nice little bacteria are incubated.

115F

Attach the lid...

...and bundle!

In about six hours, you can check on it. It will have separated, and you'll have solids and liquids. If you like your yogurt runnier, now's the time to take it out, otherwise, you can leave it for up to 12 hours. The longer you leave it, the thicker it will be, and the tangier it will be.

Because I started a little late in the day, I really should have waited until after dinner, I am rushing things a little. In batches, pour the yogurt into a clean linen dishtowel, or into cheese cloth, and drain the excess liquid. I like for my yogurt to be quite thick, so I squeeze out as much liquid as possible.

Yes, it's gross looking... Just drain off that yellow liquid

See? Yogurt!!

Strain

And divide :) So yummy.

Divide into prepared fruit cups, and into a container for plain yogurt. If you like, you can reserve enough to act as starter for next time.

Chill, and enjoy!

Oh, and if you were wondering, Ellie's been keeping me company in her Pack n Play!

Think before you speak...

Today someone said something in passing, that likely wouldn't even have registered with me a couple years ago. As soon as I processed the words, my jaw , and my heart fell.
We had been talking about the terrible, heartbreaking shootings in Colorado, and about the gunman. We were talking about what an unstable individual he must have been, when somone said "he must be missing some chromosomes".

...

People don't realize what they say. That person knows about Ellie, but it didn't even register with her that it was an inappropriate thing to say. I'm sure it is much like how people use the words "gay" or "retarded". It is completely wrong to use those words in a defamatory sense, yet it happens everwhere, all the time.

I wish it wouldn't. I wish people wouldn't associate lgtb people with negative. I wish everytime someone did something STUPID, they weren't called retarded. Ellie is "retarded". It is in her chart. The pc term id developmentally delayed, but however you spin it, it doesn't mean she is stupid. Far from it!!

I was so hurt by the comparison between psychotic mass murdered, and my little girl who happens to be missing chromosomes.

But, if I didn't know what a blessing she was, if I didn't know how amazing it is to know "special" children, I wouldn't have grown my heart enough to be hurt by those words.

Please, if someone does something ridiculous, just tell them they're ridiculous. If they're mean, tell them they're mean. If they're stupid, call a spade a spade. Just don't use a term that is heavy with emotional implications. Think before you speak.