Wednesday 27 February 2013

Stella & Dot + World Down Syndrome Day = AWESOME

World Down Syndrome Day is a UN recognised day.  It is a day to spread awareness and acceptance for those rockin an extra chromosome.  I love this day as it gives me even more of an excuse to talk about DS and Stella and plaster even MORE information and pictures on my facebook page.

Last year I ordered about 300 bracelets and sent them out to family and friends and also those that I knew on Facebook.  I didn't charge anyone, I just wanted to know that people were wearing the bracelet proudly to help show their support for Stella and everyone else who has designer genes.  Some people sent me money (which was awesome) and so I donated that money to the Canadian Down Syndrome Society.

This year, I decided that I wasn't going to do that again because, well, I waited for too long.  So all I was going to do was post a video that I made of Stella. Well I made two so I was going to post the second video of Stella on WDSD.  I was also going to go to Livi's class and talk about Down Syndrome to her class.

Well a few days ago I received a Facebook message from a friend of a friend.  She saw the video of Stella that I posted here on my blog,  http://mynewjourneyinholland.blogspot.ca/2013/02/unique-at-onetruemediacom.html.  My mother in law always shares my blog (thanks Kathy!!). Well this friend, her name is Melisia, loved the video and felt like she wanted to show her support.  Here is what she wrote to me:

When I was watching your most recent video blog at the end of the video you said, “learn one fact about Down Syndrome”. I thought to myself, well I can learn one fact but what else can I do?
Then I got to thinking and I came up with a small idea. If you are interested, I can set up a Facebook Trunk Show from March 17-23. You can invite all of your friends and family, and they can invite all of their friends and family etc. I will showcase deals, jewelry, and styles. I will provide the link on Facebook to the Stella & Dot Trunk Show. I will also email, to you, a link to pass along to those who don’t use FB but want to shop..

I will donate ALL of my commission from that show to the Canadian Down Syndrome Society, or any other organization that you would like to choose, on behalf of your little Stella! 

Wow! I was blown away! Someone was reading my blog!!

But seriously, I was so very happy to hear that someone wanted to help to spread awareness and acceptance of those with Down Syndrome.

So Melisia has set up an Event on Facebook. https://www.facebook.com/events/499229126802702/

Be on the look out for an invite as I will be inviting EVERYONE who is my friend on Facebook.

Last year I donated any money given to me for the WDSD bracelets, to the Canadian Down Syndrome Society.

I fully support this society and think that they do a lot for those living with Down Syndrome.  I love their slogan "See The Ability" and love seeing their billboards up.  There is billboard on the #3 Highway here in Medicine Hat.

However, there is another non-profit organisation that I wanted to donate to this year.  The Down Syndrome Research and Treatment Foundation has a campaign called Plus15.


Plus15's mission is to improve the learning, memory and speech of people with Down syndrome by 15 percent. We are a campaign of the Down Syndrome Research and Treatment Foundation (www.dsrtf.org)
Company Overview
plus15 is a campaign of the Down Syndrome Research and Treatment Foundation (DSRTF). DSRTF is the largest private source of funding for Down syndrome cognition research.
Description
You are a mom. A dad. A brother. A sister. An aunt. An uncle. A cousin. A grandparent. A teacher. A coworker. A friend. A neighbor. A classmate. A caregiver. If you know or love someone with Down syndrome, you know that they are already capable of doing a lot on their own. plus15 is about increasing those abilities and opening doors for more people living with Down syndrome.

The life expectancy of an individual who has Down syndrome has more than doubled over the past two decades. Unfortunately, their cognitive abilities haven’t improved at a similar pace.

plus15 is a campaign to improve the memory and learning ability of individuals with Down syndrome by 15 percent. plus15 could make a big difference in allowing people with Down syndrome to live their longer lives more independently, and with more opportunities than we ever imagined possible.

Research scientists who have been working on this tell us this is within reach. But to make plus15 a reality, we need your help.

At plus15 we believe that individuals with Down syndrome deserve to have advances in their cognitive abilities to keep pace with the medical heath improvements that have lengthened their lives.
General Information
plus15 is a campaign of the Down Syndrome Research and Treatment Foundation (www.dsrtf.org), which is dedicated to finding a treatment to improve cognition including learning, memory and speech for individuals with Down syndrome.



This is where all the money made from Stella and Dot orders will go.  I believe in this foundation and feel that money needs to continue to be put towards ongoing research to help those with Down Syndrome lead more independent lives.

So there you have it!  If you want some beautiful jewellery AND want to donate then go to your events page and take a look at all the awesome jewellery that Melisia will be posting on there!

I'll be posting facts about Down Syndrome and there will be some beautiful jewelry posted for you to look at and purchase.

Here is the website link also: http://www.stelladot.com/ts/ibyn5


And here is the Stella&Dot Spring Look book.
http://issuu.com/stelladot/docs/caspring2013lookbookstelladot/1






Monday 25 February 2013

Dentist Appointments and Making New Friends

Today we travelled to Calgary. A wonderful 3 hour jaunt.  We went to the Children's Hospital as they have a dental clinic there.  Why, oh why would we travel so far to have Stella's teeth checked? Are there not dental clinics here?

Yes, there are dental clinics here, but we wanted to go somewhere were the Dr. who sees Stella is familiar with possible differences that there might be when it comes to a child rockin extra genetic material.

Twas a VERY long trip for a 15 minute check up.....but to me it is always worth it.

Her teeth are good. No cavities, Yay!  She has gotten all but one of her teeth and the dentist seems to think she may or may not get it.  Seems that kids with DS sometimes don't get all of their teeth. No biggie though.  Her teeth are VERY crowded so there is a concern for her getting cavities between them so we are going to attempt to try and......FLOSS HER TEETH.  Now, I am really not holding my breath on this going all that well as sometimes just brushing her teeth can be a bit of a chore.  Olivia and Sophie are JUST as challenging to get to floss!  But we shall give it a go.

She has an occlusion (which means that her top and bottom front teeth don't touch), which again is common in kids with DS.  That and the fact she sucks on a pacifier still.  Soooooooo I guess at some point we will have to take away the suckie.  So for anyone who thought that a pacifier is better then a thumb (like I did), you are in fact WRONG.  Apparently sucking on a pacifier for the first year of life is ok (and it cuts down on the risk of SIDS too), but after the first year, well, then it is best that a child stop using a pacifier.

Yeah, I REALLY wish I knew that.  Stella is very much addicted to her pacifier. Sigh.  Well tonight and probably tomorrow I will not be worrying about that. Flossing, yes, flossing I will focus on first.

Now on to the highlight of MY day today.

Mickey, Stella and I had the privilege of meeting a fellow mom who is in the T21 club.  Not only that, she is a fellow blogger.

Her name is Karyn and her blog is Our Epic Story http://karynslater.wordpress.com .  We met through blogging (we read each other's blogs).  I emailed her letting her know that I'd love to meet her and she agreed to meet up with us after Stella's dentist appointment.

Her oldest little boy, Jake, is rockin 47 chromosomes and let me tell you, he is just a cutie.  Jake has a younger brother. His name is Cole and he is a lil fire cracker!

It was so nice to sit and chat with another mom travelling along a similar road as me.  Plus it was so cute to see Jake and Stella toddling around.  They were doing your typical toddler stuff.  Toddling.. observing one another, sort of interacting, and then just plain ol ignoring one another.

Here are a few pics...

Jake was just so cute! He was so observant and would just stare at Stella while she did her crazy head shaking dance. Lol


In order for us to get a picture of them together, Mickey had to step in and hold them.



Jake's lil bro Cole. Another blue eyed cutie pie!
What a great day! I am so glad to have made a new friend and I can't wait to see Karyn and her kids again.  And maybe, just maybe she'll agree to doing a guest post on my blog!!

All that walking around, licking things, and playing tuckered this lil girl out!

Friday 22 February 2013

3/21 World Down Syndrome Day

So last year I made a video in honour of World Down Syndrome Day.  This year I went a bit crazy and made two videos!  So I decided to make this video below a "lead up" video to WDSD.

I hope you enjoy it. I had a fun time making it and even though some days my journey to acceptance is hard, I love Stella with all my heart and wouldn't want her any other way!

She is Unique.

Tuesday 19 February 2013

Respite....and regret.

Stella got approved for respite. I wanted respite, as I feel there are some things I just need to do with the older girls that I can just not do when Stella is with us.

But now that we have been approved for respite, I am panicking. I am feeling guilty like I am trying to pawn my child off on someone else so life can be a bit easier for ME.

Sophie is in preschool now and that gives me some time alone with just Stella. But now that I have been given respite, I am being asked for what days I want the respite.  Really, all I wanted was a day or two in the afternoon (when Stella naps) so that I could take Olivia and Sophie somewhere without having to worry about Stella licking floors,  climbing up somewhere that I can't reach,  or having her reach out and scratch some innocent little kids leg or arm as they pass by because she is over stimulated by all the noise.

I want to be able to sign Olivia up for gymnastics and to not have to bring all of the girls with me. Cause like I stated above, Stella is busy and I just want to focus on Olivia if I am taking her to gymnastics.

We were given 240 hours a year, so about 20 hours a month!  Now, if I can mix in developmental aide WITH respite then I can totally see us using up those hours.  But if we can't.....here is where I am panicking, feeling guilty, regretting asking for respite!  Because if we don't use up those hours, then the next time we renew our contract with FSCD, we may not get any respite hours!

So this is currently where I am right now. I am trying to figure out how and when we are going to use respite.  I know that I may be over reacting but I am just feeling a bit overwhelmed at what seems like all the new help that Stella seems to need. I am panicking that I am not doing enough for her.  Yet at the same time with all this new "stuff" I am trying to get done for her I feel like I am losing valuable time with her.  Time that I should be spending with her, not anyone else.  I am trying to find balance and I am just struggling.

Hopefully I will gain some perspective over the next few days.








Thursday 14 February 2013

Happy Valentines Day!

Valentines day is almost over.

I attempted to post a video of Sophie saying "Happy Valentines Day" and Stella giggling and walking away as I try to get her to sign "happy". The video did not load.

So instead, here is a picture of the cookies I made for Olivia and Sophie's classmates.

I am really quite proud of myself as I am not that fond of having to do any type of baking/cooking for an event as I find it quite stressful and a whole lot of work!!

But I made myself and it was actually quite enjoyable. The girls helped and seemed to enjoy it also.

So Happy V Day! I hope you had a love filled day!



Wednesday 13 February 2013

Feeding My Child

I am getting very tired of feeding Stella the same ol shit every day.

Her favourite food colour seems to be yellow, or white.  You know, popcorn, cheese, yogurt, bread. frozen corn, frozen peas (oh wait, ONE green item), crackers, granola bars...

Notice what is not on there?

Fruit, veggies.

The only way I can get fruit and veggies into her is to give her baby food!  I try, Oh I try!

Steamed carrots?
Those end up thrown on the floor (immediately).

Steamed broccoli?
She ate that once. I was sooo excited!  The next night I gave them to her.... and they ended up on the floor.

Steamed potatoes, sweet potato.
Yup, all on the floor.

 She is a very choosy eater, and I am getting very frustrated and worried that she is not getting enough of the healthy, good nutrients that her body needs.  I know that kids with Down Syndrome have low tone..... everywhere, which means that eating can be affected also.  But at what point does this change?

I know that eating, and talking require fine motor skills.  So I contacted CHADS (Children's Health and Development) to ask about getting in a speech pathologist.  I was told someone would call and make an appointment to come over and assess her. I have yet to hear from anyone.  So I am going private.

Why did I wait so long to start her on speech therapy? Good question.

Here in Alberta, Canada, a lot of  services for children with special needs is provided through the government.  It is nice to have this option and to not have to worry about having the money to pay for such services. I mean, we DO pay, via paying taxes, but we don't have to pay UP FRONT to get the extra services that we need.  That being said, I feel these extra services are very basic and sometimes NOT helpful at all.  But perhaps I will save that rant for another post.

So speech isn't really offered until preschool.  I feel that I should have been on this sooner and pushed for speech therapy at 1 years old or something!  I mean there are babies with DS out there getting speech therapy!!

Which is why we are deciding to go private with speech therapy. I want to give Stella a little bit of a head start before she starts preschool in September.  Plus speech therapy will help her with her eating skills as well.  It's all connected.

On the positive side, Stella will now eat a grilled cheese sandwich when it is cut in strips!! You see, before it had to be cut in pieces or else she would throw it on the floor.  But now, now she'll eat it in strips! Oh and snow peas (another green veggie), she'll take a few bites!!  We are making progress!




Friday 8 February 2013

High Hopes

When Mickey and I were dating, Mickey had a motorcycle.  He loved it, and me...not so much.  I mean I liked watching HIM on it, but I wasn't that big on being a passenger.  It just wasn't very comfortable at all.  It was a sport bike so the passenger was always slightly higher then the driver, plus the passenger would get squished up against the driver whenever the bike came to a stop.

Yeah, not very comfortable in my eyes.  I mean, I LOVED being close to Mickey, but being thrown up against him as the bike came to a halt...not so much.

The one thing that I did enjoy, however, was the spirit of community that those who owned bikes seemed to have.  Whenever another biker passed us going the other way there would be an automatic "wave" by each biker as they passed one another.  It always made me smile.

After having Stella I thought that we were a part of a club, a family  I figured that whenever we came across another family with a family member who just happened to rock an extra chromosome, I thought, just like those that owned bikes, that in passing, there would be a smile, a wave, a nod....something.

So far I have not experienced that.

Today while I was at the hospital with Stella (she was there for an echocardiogram, which I will blog about another day) a young girl and her mom came into the waiting area.  This young girl was about 12, had beautiful blonde hair and just happened to have Down Syndrome. I looked at her mom  and smiled at her as she walked by with her daughter.  Like those bikers passing each other on the street, I was expecting a smile back.  A "hey club member" smile.  Instead I got nothing. No smile, no nothin.  She just kept on walking.

I was crushed. I felt so alone at that minute. I wasn't expecting to become best friends with this family but I was just hoping for a "Hi, how are you? What's your little girl's name? She is so cute. This is my daughter..." you get the idea.

At first I thought that maybe she didn't see me smile and I figured that once she sat down and glanced over she'd start a conversation.  As I was thinking this I also realised that I was facebook friends with this woman!!!! Seriously, when I first had Stella my home based development worker gave my name to all of the families who had a child with Down Syndrome, and this woman "friended" me.  She even sent me a message!    So I thought for sure once we were siting there, across from one another that she would say something to me.  I had already attempted contact and honestly I just felt so deflated that I could not muster up the nerve to put myself out there again.

But......nothing. Not once did she look over and smile at Stella.  Not once did she smile at me.

I have had this happen before.  I was at Edo with all three of my girls having lunch and sat RIGHT NEXT to another family who's daughter had Down Syndrome, and again...no smile, no nothin!

I was not expecting to become friends with these families. I just wanted to feel like I wasn't alone, that even though Stella is younger then their child, that even though we don't know one another, that we were/are still a "family".

Perhaps I was too naive in that belief.  Perhaps it is the culture of this small town I live in.  

 I don't know.

All I know is that when Stella is older and I run into a mom with her little boy or girl who has Down Syndrome, I will smile, I will say "hi", and if they are open to it, I will walk over and talk to them.










Wednesday 6 February 2013

Breaking The Habit

Thumb suckers. I have two of them. Olivia first found her thumb at 8 weeks old. Boy was it sooooo cute to see her put her hand up to her face and search with great earnest for her thumb. And then when she found it, the look of absolute comfort in her itty bitty face. We tried to encourage her to suck on a pacifier but she clearly had no use for it, so we didn't push it on her and just allowed her to suck her thumb.




A look of utter comfort on her little face.

The years went by, her thumb sucking increased. It was always in her mouth. I knew that it was going to be a hard habit to get her to "break".

You see, when I was young I sucked my finger. I clearly remember the comfort it brought me.  My mom tried EVERYTHING to get me to stop; pepper on my finger, band aids, nasty tasting stuff, and just plain old smacking my hand every time it was found in my mouth.

And none of it worked.  Nothing, could stop me from sucking my thumb.  It wasn't until I was 8 Years old that I decided that I needed to stop sucking my finger......Olivia seems to be EXACTLY like her mommy.

Since she was three years old we have been trying to help her to stop sucking her thumb.  We started with sticker charts.

Nope, a cheap dollar store toy every week was NOT worth it.

I gave up for a while. I actually didn't try that hard with her at that time cause honestly I didn't want to have to deal with her crying and fussing for weeks on end, especially at night.

At about 4 years old we tried the "stop nail biting" nail polish.....she figured out how suck her thumb, and then drink some water, then suck her thumb, then drink some water etc.... until finally tadaaaa! No more nasty tasting nail stuff.

Olivia and Sophie....thumb sucking buddies!
So......here we are 7 1/2 years later and Olivia is STILL sucking her thumb at night!  Her mouth is permanently changed now due to the constant sucking and her teeth.  She will need braces.

On the positive side though, it seems her little sister Sophie has prompted her to really want to stop sucking her thumb at night.

You see, Sophie is a thumb sucker too.  She started sucking her thumb at around 3 months.  And she too, sucked it ALL THE TIME!!

AAAAAHHHHHHH!!!

Well, the other night Mickey decided to put some Bitter Cherry spray (this spray is actually made to stop puppies from chewing and licking things....) on her thumb......and Sophie agreed!! Not only did she agree, she actually fell asleep without sucking her thumb and with NO FUSSING!  Sure, it took her a bit longer to fall asleep and she woke up a few times in the night, but not once did she complain, or cry or anything!!

"It can't be this easy" is what the hubby said to me.

The next day while Sophie was watching TV not ONCE did she suck her thumb!!  And she didn't even have any Bitter Cherry spray on her thumb!!




Sophie NOT sucking her thumb while watching a show!!!

Needless to say, the fact that Sophie is no longer sucking her thumb at night has seemed to prompt Olivia to do the same.

Gotta love sibling competition.