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.

One Small Step - Ladner Style

I enjoy the days where there isn't much to update. Life is quiet, it's amazing. I've been busy in the mornings, while Jakob is at camp. I am on a bit of a hazelnut kick, since I discovered a huge bag of them in the back of my freezer. Coupled with a bunch of gorgeous carrot tops I couldn't bring myself to throw out, I made Carrot Top and Hazelnut Pesto! It is amazing, more bitter than regular pesto, but delicious none the less. I've also made Hazelnut milk (super easy, so delicious, especially in coffee!), and from that process ended up with Hazelnut meal!

Ellie has graduated into her big girl Pack 'n Play! She had been in a moses basket, on a rocking stand, since the day she came home from the hospital last June. Since she doesn't pull up without an audience, and cheering squad, we have her on the infant setting, which hangs from the side bars. She's got a silky satin sheet, and she LOVES the whole set up. Last night was the first night, and she rolled all over the place, much to the nurse's amusement.

Speaking of Ellie, I have decided to host our very own One Small Step walk! We were originally registered to walk in Burnaby, but we aren't sure if Ellie will have any fallout from her ICU stay at the beginning of August, and most of the important people in her life weren't able to attend. I am SO excited about hosting the event, I hope it goes off without a hitch, and has a good attendance!

Check out our event page!!
http://onesmallstep.fpwr.org/dw/walking/location/434

And check out our FB event page!
https://www.facebook.com/OneSmallStepLadner

Mandala Doodles

I've been drawing a lot recently. It's an awesome outlet, which is easier for me than sewing these days. I stumbled across mandala drawings the other day, and decided to try it out for myself!

Here's the start, just pen and paper:

Sorry, camera photo!

And here is what it looks like now that I've coloured it in.

I really, really enjoyed the process, it was very calming, centering. I intend to make several more, especially when I need to take a break from reality for a while.

Edited to add:
Here's one I did for Ellie :)

Blah

Well, that was a nice buzz kill, and a great way to spend $7.50 in parking. The ENT looked at Ellie's ears, they're still flatlining on the typanogram, so "we have another data point for hearing loss". He wouldn't scope her, because he wants to wait for her follow up with respirology and the sleep study in August. He looked at her tonsils, they're a 1 on a scale of 1-4. They're tiny. There's nothing worth removing.

So, we have to go back to see him for another one of these ever so pleasant visits in a month from now, so we can yet again see that Ellie's eardrums don't move, and so they can decide what they're going to do with her. He said we should gesture with her a lot, and accentuate and enunciate when we speak, until then. They don't want to do any further investigations until they can do so in the OR, and that all depends on what happens in August. Apparently, they need to sedate her (likely intubate her, too) so that they can properly assess the state of her ears. If, while they're in there, they see that the issue is fluid related, then they'll put tubes in. If not, then they'll know that she doesn't need them, and it's a more permanent type of hearing loss.

Ah, the heat is messing with my brain's capacity to spill thoughts clearly.

In August, she is going in for her little holiday, at her home away from home. If the polysomnograph (sleep study) shows that she's still experiencing apnea spells - which she is - they will decide if we can stay the course with just bipap, or if they need to intervene with a tracheostomy. Dr. Dee thought maybe if we could take out tonsils and adenoids, that might resolve some of the issue, but Dr. ENT seems to think that wouldn't help at all, and that she just has a small and weak airway. He would be the doctor that would put in the trach, so we know we will be seeing him in August as part of her planning stay anyway.


Blah.

It doesn't help that DH is so blasé about everything. He witnessed her desat to 70 two nights ago, he sat there watching it happen, and today couldn't remember that it happened, making me feel like I'm losing my marbles. He told me "well, she is getting stronger, she doesn't hardly desat at all anymore". ARGH.

Can I tell you about my summer? It's been amazing. And seriously, we deserve it, considering the start to our 2012.

DH has been on holidays for a while now, going back to work on Saturday. Our weekend was great.

Jakob got a care package from his grandparents in London

Repairing the Jeep!

Watching her brother in the garden

ah, my pretty baby <3

On Saturday, my brother came to spend the afternoon with us. Jakob loves his uncle, and was so happy to be able to spend time kicking a soccer ball around the yard. After, we went into town, to watch the Tour de Delta. We walked up, and got the best seats, on a patio right by the race track. We had a great dinner, and a fantastic time watching the racers zoom by.

In the pram, en route to the Tour de Delta

Squabbling over who gets the colouring book. It sure starts early...

Jakob's reaction to tons of cowbells ringing as the racers passed

Bitty in her sling, covered in a blanket to save her pasty skin

Look at them go!

Yesterday, we went to a family reunion, after cleaning our house top to bottom for an Open House. The reunion was for DH's grandfather's side of the family, and there were probably 40 people who came. It was lovely. The weather was perfect, and the park we went to was on the river, with a beautiful beach. Jakob built a sandcastle, and found a baby starfish in the water, which he was so excited about. I wish I'd taken pictures, but I was having too much fun to remember. Ellie LOVED the ocean, and wanted to walk right out into the water (holding our hands, of course, she isn't walking yet). DH and I tossed a football around for a while, and the kids played with their cousins, while we enjoyed adult conversations in the glorious sunshine.

Today, we dropped Jakob off at his first day of Sportsball camp. We packed our ice coffees, our bocce ball set, and headed off to Diefenbaker park, with Ellie. She sat in the shade of a big tree, while DH and I played a very fun couple rounds of bocce. I won the first game, by a chunk, and he remembered that I am actually pretty good at the game. He won the second game on a lucky last throw.

We packed up, and headed home, just as the sun was eating up the shade, the park was getting busy, and it was time to feed Ellie.

This afternoon, Ellie has an appointment with ENT. We have a lot of hope tied up in this appointment. Hope that they can fix her hearing with tubes, and that it is possible her apnea could be improved or resolved by an adenotonsillectomy.

Wonderful Days

Sunday, Monday, Tuesday, and today have been some of the most incredible, best family days we have had in months. It is amazing that they've all been in a row. Vacation days are precious.

Jakob flourishes when he has the both of us at home, as does wee Ellie. We've gone out on nature walks everyday, and we have the most relaxing bedtime story sessions. Jakob hasn't complained about going to sleep, and he has been choosing to stay in his room all night! Last night he came in for a quick snuggle, following a bad dream, but once he was feeling back to himself he went back to his room.

The only negative we've had, is with Ellie's thyroid follow-up bloodwork. We drove in to the hospital (the local lab won't run tests on her, her veins are too small...) to find out that she needed to fast before. Ugh! So, she has to fast tomorrow morning, and we have the joy of driving in to town, through rush hour, to get the tests run. Lovely.

Oh well, not at all worth complaining about! Life is good.

Perfect Day

The husband and I have started Jillan Michael's 30 Day Shred. I decided that I'd had enough of my muffin top, and of his muffin top (gasp, if he ever reads this!), so I told him we were doing it, and surprisingly he agreed!

We are three days in, having started on the first of July, and intend to go through right until the end of the month. I hate it, and I love it. Around the 17 minute mark (of 20), when my muscles are screaming, and my heart is pounding, and I'm sweating a puddle on the floor, I start to feel incredibly exhiliarated and that amazing feeling lasts for several hours afterward!

Jakob started his first day of summer day camp, and LOVED it. I'm so glad we decided to sign him up for activities to keep him busy. I couldn't imagine having him home every morning, and now he's only home in the morning on weekends! DH is on holiday, so we get proper weekends, and we have lots of family time planned for the next two weeks.

Ellie had her Gesell Developmental Assessment today. I was not looking forward to it, but she did better than I thought she would, and I am so proud of her. For a girl who spent more than six months in hospital, and the first eight months of her life mostly asleep, she's only three months behind! There are a ton of things we can help her with, and honestly, it's awesome having a baseline to know where she is at. From here, I can look at the activities of a 9-10month old, and tailor them to suit her, and her needs. It's exciting!

We had a great visit with Auntie B, and then went out for a long walk in a beautiful, hilly park. DH and Jakob raced up hill, and rolled back down. Ellie got nose to nose with a baby duckling! Then we went for a refreshing forest walk.

Another amazing day!

Oh, and on an EVEN BETTER note, we're now up to an outstanding $4500 in donations towards the One Small Step walk in August :)