it's 8 o'clock (am) somewhere

The clock on my nightstand currently read 3:19 am. There is no way I am going to be falling asleep, I have been up most of the night already. The current situation in my room is this:

Poppy has taken over my place in the bed lying sideways with the balls of her feet in Marks back. Mark is teetering on the edge of his side. My head is at the foot of the bed in the dogs normal place with my legs acting as guard rails to keep Poppy from taking a header off the edge.

Marks sleep apnea mask is crooked on his face and is making a louder than normal whirring noise and Ola and Auntie Bev are snoring through the baby monitor from the girls room. Poppy's breathing has quieted significantly in the last hour, but it has turned into a snore-hiss-whimper, with the occasional request for help.

Oh, and the dog? She's tucked in nice and cozy under the blankets snoring.

As cockeyed as this whole arrangment may seem it seemed like the only feesable way to make tonight work. Poppy is sick with a double ear infection and a cough and fever that have her teetering on the edge of pneumonia. Because her and Ola share a room in our tiny house a single bark of her cough sends Ola into a panic that then wakes her as well. Poppy can't sleep on the couch on her own, so that leaves my bed. Auntie Bev is here to help me for 2 more days while I recover from my septum surgery that I had last week. I am unable to pick up Ola or bend over her crib. Because she is more useful to Ola right now in the middle of the night she is posted in the girls room with her. Poor Mark he really doesn't have much say in the whole situation, if he can't sleep in our bed he has the couch. Don't feel too bad for him, it's pretty comfy and I left him the fluffy pink princess blanket.

In my efforts to keep everyone sleeping I have sabotaged my own, but that's ok... I can't sleep anyways. The pressure behind and in my nose is frustratingly annoying, and when my kids are sick I feel like I am on high alert.

Hey wait a minute....

I'm not the only one awake. The roosters are up too.

hot pants and ankle boots

In the late summer while Ola was having a visit from her physiotherapist a conversation came up about therapeutic "hot pants" and that they might be beneficial to help Ola control her hips and prevent her from splaying ler legs outwards. Her butt-scoot was not applauded either and this would help discourage it. We left the subject alone for the rest of the visit, but everytime Ola was almost doing the splits the little pants kept creeping into my mind.

I like to consider myself pro-active when it comes to Ola's therapy, I like to be one step ahead. I asked Physio to bring a pair to Ola's next visit. We put them on her and she was not a happy camper. She was miserable, her little legs unable to split, and her trademark butt scoot was was hobbled.

I couldn't stand to see her unhappy, I took the pants off 5 minutes after her therapist left and I put them in her sock drawer.

As the months wore on, I tried Ola in the pants a few more times before quickly giving into her whimpers of annoyance. I gave up... No more pants.

By late November with her scoot still in full swing I noticed it was becoming quicker and she was using so much force with every heel pull that she was just about pulling straight through into the splits into a face plant.

I pulled out the pants, and she whined... but only for a few minutes.

Ola has 3 pairs of "hot pants" now, and wears them everyday. She doesn't mind them, and they are doing a world of good for her leg strength.

We are still trying to get her up on her feet and off her toosh so Ola is now also wearing plastic ankle braces in her little booties everyday.

Ola sporting the original red "hot pants" the ankle braces are there too, they are just hiding under her Robeez so she can't rip off the velcro.

Wait... what did you think this post was going to be about?

Oh! get your mind out of the gutter!




Linking up again with Yeah Write!

any time is a good time for advocacy

On October 28th 2011 Ola went to our local hospital to have tubes put in her ears, it wasn't a really big deal, I was a little but nervous, handing her over to the doctors was a little bit upsetting, but watching her struggle to succumb to the anaesthetic was the worst.

I walked back to her room, impressed with myself that I didn't cry, and pretty much as soon as Mark snapped this lovely oh so flattering photo the nurse was back to take me to recovery to be with her.

When I was sitting in recovery with Ola I was busy chatting with a really friendly nurse about Ds. I can't remember how the conversation started but she asked me why Ola didn't have any teeth yet. When I started to explain to her that children with Ds usually get their teeth anywhere between 18-24 months and in random order she was really surprised, she had no idea. It kind of surprised me in the moment that a nurse wouldn't have any idea about this, but then she can't possibly know everything about every syndrome can she? She just needs the basic information about the patient she is dealing with, not all the fine details.

It took a about an hour in recovery for Ola to stop crying, and then we hitched a ride with a porter back to her room where she cuddled with Daddy.

I told Mark about our conversation, and as Ola sat with him still groggy and cranky from her surgery we talked about how any time is a good time to be a Ds advocate. There are so many opportunities in a day to spread awareness, you just need to get the conversation started.

I decided then and there how I was going to celebrate National Down syndrome Awareness week in Canada.

On November 7th the last day of Ds Awareness week I got a tattoo.

It has taken me a long time to write this post because this tattoo means so much to me. I have a few other tattoos that all have special meanings to me to, but this one... this one is different.

When I was deciding on how I could promote Ds awareness through a tattoo I decided that I would get a modified version of the Canadian Down Syndrome Societies logo. I am Canadian, and Ds was the purpose so it was a perfect fit.

I didn't want a carbon copy of the logo and gave my tattoo artist some ideas to work with like the heart, but I wanted the basic message still there.

It was a easy decision for me to get it placed in an obvious easily seen spot, the whole idea is for people to see it, ask about it, and then I can talk about it. I love talking about my beautiful Ola and her fabulous friends!

The other day (when the snow wasn't dumping!) I had the sleeves of my sweater rolled up in the grocery store and the cashier commented on my tattoo. Perfect, the conversation started and she learned that Ola:

a) had Ds (she said she had no idea)
b) that she was 20 months old (and still so little)
c) that she isn't walking yet, because of loose stretchy tendons, but that she's a bum scooter (bum scooter info courtesy of big sister Poppy)
d) that the symbol of my tattoo is for the Canadian Down Syndrome Society.

Mission accomplished I say.

There are abundant opportunities to get the awareness and advocate conversation started, you just have to start them.

I could talk about Ola all day long!

2 for 2 from Kelle Hampton and Enjoying the Small Things

If you have a child with Down syndrome chances are you know who Kelle Hampton is and have read her blog Enjoying The Small Things.

Last year Kelle set out to raise $15,000 for the National Down Syndrome Society in the US. With help from her readers Kelle and her sweet daughter Nella surpassed $100,000!

This year for Nella's second birthday they are hoping to make that $100,000 into $200,000 and really I have no doubt that her readers will accomplish it!

Please if you have a few dollars that you would be willing to donate go to Nella's 2 for 2 page and you can donate there. Even though we don't benefit directly from the NDSS in the US, all the work they do is for the greater good of all children and people that have Down syndrome.

The readership and followers that Kelle has boggles my mind, but I am so glad that she is spreading the word on Ds, and making more and more families and people aware of how great our children are!

A Simple Family Silhouette Tutorial

I was lucky enough to be able to share a tutorial over at DELISH today!

Please go check it out, and while you are there check out their Winter 2011 issue... You know what? Just grab a cup of coffee and take a look at the archived ones too!

handmade christmas

It is always my goal heading into the holiday season that I am going to make as many handmade gifts as I can, but as always time gets away from me, and I am scrambling to pick the most important ones to finish. I had been day dreaming and building the pattern in my head for this fox for Ola for about 2 weeks, but still hadn't made my way to the fabric store. Mark and I ended up in Washington for his work on the 21st of December and realized as we were driving that we were in Lynnwood. Lynnwood my friends has the closest location of Hobby Lobby! When I was trying to source the materials for my winter scenes I continually came across Hobby Lobby as a store for supplies I was searching on Google. Not planning on going to Washington any time before Christmas I had given up on getting there, until suddenly we were there!

I promised Mark that I would be 15 minutes...

63 minutes later Poppy and I emerged. It was the best craft store I have ever been in. I was surrounded by all of the supplies I had dreamed of. I was like a kid in a candy store, I was running around frantically afraid I would miss something. Fabric! Yarn! Glass! oh my!

And the best part is... they are coming to Bellingham. So my crafty friends make sure in the spring you look for them on your next run down for cheese.

Like a sign from above they had a bolt of this fantastic fleece for 30% off and I thought it would be perfect for Ola's fox.

I stayed up until the wee hours of the 23rd to get it finished and just had a chance to take a photo now.

Most importantly Ola loves it, and that is why a handmade Christmas is the best!