Singing,Singing and Grad For Kay

June has been very crazy for Kailyn (my oldest) there have been a lot of updates and amazing things that she has been involved in this month, mostly with her singing.

First update:

Kailyn competed in Kwanice music festival, a singing competition that takes place through out the province. Unfortunately this year they did not allow ANY video or camera's during the competition so I don't have any proof of the amazingly beautiful job that she did however she did take 3 first place finishes and 3 second place finishes during Kwanice.

She kinda kicked ass!!

During the award ceremony she received the Adjudicator's Choice Award for Top Junior Vocalist, the Luzviminda Folk Dance Troupe Trophy for Best Junior Folk Song and she also received a Festival scholarship.

and she was asked to preform during the award ceremony and the great thing about that is I got to record it.

Sorry about the quality of the video but my camera was no where to be found so I had to use Kay's camera.

Then the most amazing news came, Kailyn was recommend to compete in Provincials which was held on the 13th of June.  That meant we had to leave for Provincials right after our 2011 JDRF walk...we were exhausted. 

This was an amazing opportunity for Kailyn and a true eye opener at the amazing talent that Ontario has to offer.  She sung 2 songs beautifully and bravely. 

Boy let me tell you, hats off to this girl for standing up in front of people and judges and preforming.

After all the kids (young adults) where finished singing there was a WONDERFUL workshop which was another eye opening experience for Kailyn that showed her just how far she can go with a lot of hard work.

We were so very proud of her...I say we because this is something that my mom does with Kay, I can't take any credit for this.  She pays for the lessons and week after week she brings her there, she enrolls her in Kiwanis.  She does a lot for Kailyn and her singing!  THANKS MOM!!

Second Update:

 In September I will be a mother of a high schooler...YIKES!!!

That is right Kailyn graduated this June from grade 8.  Congrats Kay and I hope you try really, really hard next year...because this year, well...

 

Our 5K Day

I have been having MAJOR technical difficulties with my 5K Day video.  Something is just not right with it!!

However I think that I have figured it out...maybe, thanks to facebook?!?!

On Sunday we (the fam) decided that we were all (minus a few LAZY and some napping members) going to complete the virtual 5K.

My husband and I signed up for this in thoughts of training and running it HOWEVER due to a crazy busy June and much sickness that was not possible.  So we thought we would make a fun day with the kids out of it...and of course it turned into a competition.  BLUE DOGS v.s. The Diabetes Team

Thank you to Tara for coming up with and "running" with this great idea...we ALL had a wonderful time during our virtual 5K.


Enjoy the video...figures crossed it works ;)

From a 5K Day to Our Walk To Cure Diabetes

Originally I wanted to post about our 5K Day we had yesterday...

HOWEVER

Blogger would not let me upload my video and you tube blocked it do to copy right shit...blah blah blah

SOOOOO it is time to adapt, today's post Our JDRF Walk To Cure Diabetes, June 12th 2011 :)

This month has been so insane, I'm just so behind on everything that we have done this month.  But one very important and major thing that happened was our JDRF walk to cure diabetes.  It was a beautiful day, with beautiful family and it also included a beautiful girls 7th birthday.

getting the day started...we were almost on time!

Kylie with some gifts for her birthday given by some wonderfully sweet friends :)

Cody and Kirstin are ready to go!!

Cara and Dusty from the DD :)

favorite part of the walk for the kids is face painting.  This one is a birthday cake and lucky number 7

Kirstin with one of our wonderful little helpers.  Without them we may have been leaving the walk with 2 less kids.

Our wonderful helpers keeping an eye on the little kids

Me and Cara

some wonderful friends from grade school

the walk

2 of our Golden Sneaker supporters.  Willms Financial & Breathe Pilates & Fitness

Connor the pirate

happy birthday Kylie

lucky # 7

 
Thank you to everyone that come out and supported us and of course we could not do what we do without the wonderful donations from everyone.  THANK YOU!!  

You Can Do This

Tomorrow, the 15th is the launch of the You Can Do This projected. 

If you had not heard of this amazing idea started by Kim over at Texting My Pancreas hit the link and take a little time to find out because it is wonderful!!

I'm still working out what in the hell I'm going to do for this project but I'm so IN!! 

I can't wait to get started, get a little creative maybe, have lots of fun and spread the word because  

You Can Do This :)

What Is Just So Funny?

What is just so funny?

Is it that moment your doctor looks you dead in the eyes and tells you your child has type 1 diabetes.
Would that be funny to you?

Is it watching people holding your child down as they scream out in pain, yelling at you to make them stop as nurses and doctors try to hook they up to life saving iv drips and taking constant blood sugar checks because at any moment your child could seize or worse.  Would that be funny?

Is it the realization that life as you knew it is done and a new way of living will have to be mastered in ordered for your child to thrive and grow?  Would that be funny to you?

Maybe it's the constant worrying, the constant stress knowing that this is all up to you to keep your child alive, the minute by minute second guessing, are you doing this right? did you count the carbohydrates right? have you administered the perfect amount of insulin dose?  Well does that seem funny to you?

Or maybe when you see your child lying lifeless on the floor and can't get up due to a low blood sugar, would that cause a smile to cross your face?  Would it make you happy to know the damage that is occurring due to high blood sugar in your child's body on a daily bases?
 
Would you find it funny if the medicine that kept your child alive could in an instant cause their death?  No, I guess that is not too funny either.

Is it the fact that at night I can't even enjoy watching a movie without the ever growing thoughts to go check my child to ensure she is still breathing?  The fact that all you want for your child is to be safe and healthy and no matter how hard you try you can't promise them that.  The fact that in order for your child to live you have to cause them pain multiple times on a daily basis, tear are shed, sadness is shared.  Is it funny that my child has been in the hospital more times then I can count.  Please answer me...is that funny to you?

Would it be funny to you that a single cold or illness could send your child to the ER?

NO... then what is just so funny? What is it that allows you to think words like diabetic shock, which by the way can kill someone with diabetes can be added to a pop song? just because it rhymes with the previous verse? What is so funny that you feel the need to take a picture of a JDRF fundraiser and make rude and inappropriate jokes about it?  What is it about diabetes that people just don't seem to understand the seriousness, the destruction that this disease can bring?

Is it funny that my child has to bleed 10 times a day, is it a joke that her fingers are rough and full of holes.  Well maybe it's the 5 shots of life saving insulin that my child gets or the thoughts of heart attacks, blindness, stoke, seizures, nerve and kidney damage, and even death...well those are not so funny.

Can someone please tell me what the hell is just so funny about diabetes that this disease is not taken seriously at all.  Misconceptions are shared within jokes, misinformed people are featured on popular t.v. talk shows spreading this crap to the masses.  Magazines publish lies and make money off of them.  What is it about type 1 diabetes that people have such a hard time understanding the truth about this disease.  

Does the hurt and sadness and loneliness people feel when dealing with this disease make you smile?    

I'm confused....I think I missed the punch line!!

This post brought to you by a single picture shared on facebook...

and what was very upsetting to me were the hurtful and joke filled comment's that people were making do to this fundraiser.  The heading of this picture was named "What is wrong with this picture?"

then they wrote "hint...JDRF stands for Juvenile Diabetes Research Foundation"

someone commented "That's awful! It's amazing how many people out there need basic nutritional knowledge. And it's sad that most of those people have kids."

they wrote back "very ironic isn't it. Let's pump people full of sugar and redeem ourselves with a donation to combat what was caused by what we were just pushing! Sorry if that sounds confusing but it's that messed up!"

someone wrote"That's the most amazingly ridiculous thing I've ever seen. I'm totally reposting this."

This is something that I don't find funny at all!!

PEOPLE NEED TO STOP OPENING THEIR MOUTHS ON THINGS THEY OBVIOUSLY KNOW NOTHING ABOUT!! 


Oh and thank you KFC for your donations and for your support of the JDRF and trying to find the cure!!
 

Circles

A circle is the best way that I would describe our life with type 1 diabetes right now. 

ONE BIG GIANT NEVER ENDING CIRCLE.

As some of you know we are tweaking and changing and adding and minusing everything that we "normally" do for Cara in regards to her insulin.  This is the 3rd time in a few months that we have done such a major overhaul to insulin ratios.

Last Friday I took the clinic up on their offer to place a CGM sensor on Cara and we pulled EVERYTHING back.  Her insulin ratio's were over the top, so our clinic told us and felt that we were feeding insulin.  7 units of Levemir (5 units in the morning and 2 unit at night) her breakfast ratio was 1:16, lunch was 1:14 and dinner was 1:20 and we were seeing blood sugar numbers all over the board, more ups then downs not too much  middle ground but more then before.

Our wonderful nurse (lets call her D) has in the past and is right now spending soooo much of her time helping us try and find the perfect insulin to carb ratios for Cara.  We thought what better way to find a solution then start from square one and hopefully work our way down the A1C ladder. 

We changed to 5 units of Levemir (4 in the morning and 1 at night) and breakfast, lunch and dinner ratios were set at 1:20. 


And now, slowly but surely we are making our way back right to where we were before all of this started almost a week ago. We are now at 6 units of Levemir (5 in the morning and 1 at night) Breakfast is now a 1:17 and Lunch is now 1:14 but dinner is a 1:35 for now (which will be changing tomorrow because Cara has been running high all night because of it). 

But for the most part we are making our way back to the same place that the endo did not like,
the same place that our nurses knew a change was needed,
the same place that had led us to a A1C of 10.3.
the same place that is holding back my pumping plans.
It is the same frustrating place that makes me feel like I'm spinning my wheels but we are getting NO WERE FAST!!

It is taking so much energy out of me
It is taking so much time away from our "normal" activities
and it is making me feel like I'm running in a great big giant circle...and I can't find my way to the end of this, because there is no end.  I fell like we are just going to keep on going around and around with shit numbers then ratio changes and just end up right back where we were...I want a solution!

and by the way I hated the movie Ground Hog Day!!

The one positive note to all of this is that it does make me feel better that it was not a "quick fix" and something that I missed.  Rather it seems to be a very complicated challenge that well trained and very informed diabetic nurses are having trouble solving...is that a weird way to think about it? 

Whatever, I don't care it makes me feel a little bit better!


Until tomorrow my friends, when the sun will be shinning and more insulin ratios will be changed...FUN TIMES

The Hit and Run...

THE HIT...

Last Friday I attended Cara's first big school field trip.  It was a whole day adventure of kids running around, playing non stop and yelling very loudly.  We went to a big indoor play gym which at one end of it had a stage with a few instruments on it, one of which was a huge drum.  The kids played that damn drum NON STOP the WHOLE TIME.  It sounded like there was one little shit disturber standing there just banging the crap out of that drum, not missing a beat knowing that he was driving his mother nuts.

Cara had an OK time.  She is VERY shy and is middled by two very outgoing sisters which allows her happily to just be a follower.  When we got to the indoor play gym she was lost, not wanting to leave my side but really wanting to go play.  She ended up getting the hang of it and had a great time playing with a bunch of different kids but always sure to come back for some reassurance.  Which was fine with me!!

By 2:00 we...as in all the parents, were ready to leave and board the bus.  I gave Cara her choice where to sit and I'm sure you can guess what she said...the very back of the bus, the very bumpiest part of the bus, the very most uncomfortable part of the bus and the very farthest away from everyone else.

Cara and I in the VERY Back of the bus

We had two boys sitting directly across from us and their dad in front of them.

We were finally about 10 minutes from the school and getting back to a place that would have some Tylenol when we in the back of the bus felt a huge BUMP, there was no BANG just a Great Big Jolting BUMP.

The bus was at a full stop for what seemed to be 1 minute and BANG a car drove up and hit the back of the bus.  She hit the bus so hard that her whole front end was UNDER the bus, as she backed up the whole bus dropped down.

The car that was under the bus for a short time.

 Everyone was fine, we all transferred onto a new bus for the last 10 minutes of the ride (we did not sit in the back) 

the new un-hit bus

The only problem, 3 days after the accident my neck and shoulder started to hurt and have been in pain ever since.  It is finally starting to feel a little bit better.

Now for the RUN:

A little back story:  I use to run, I actually liked to run and I liked the way my body looked when I ran.  My husband and I met in high school at a cross country meet and he is/was a REALLY great runner.  Since the kids and becoming fat, both my husband and I have stopped running and started to get fatter.

So the time is NOW, it is time to RUN and DO... you know why? because we are training for the virtual 5k that is happening over at Mommy's A Runner  and Boy, oh Boy is this mommy ever a runner.  This blog is written by (starting to bow down in honour) Tara and guess what she is Reyna's sister from Beta Buddies.  Yeah talk about amazing family genes!!  I want to be part of this family, automatic awesomeness.

So we are signed up, we are running the virtual 5k to raise funds for the JDRF  click HERE to get all the info and run with us.

Come on I know you can do it!!

Fingers Crossed

First I must say thank you, THANK YOU, THANK YOU!! 

To everyone who commented and listened to my bitching and of course thank you for all the wonderful advise.

Yesterday was not a good day!

Today however is a new day and we are still working our way to a pump.  Our wonderful nurses have been in contact with the people in charge of accepting pump applications and a letter from our doctor is going to be written to support us in our "plan" to get the pump asap.   The words "it sound encouraging" were used so my hopes are up and my fingers and toes are crossed!!

We spent the morning at the Endo clinic brain storming and rearranging everything.  I will be logging and tracking like crazy this weekend.  Have I mentioned how much I HATE LOGGING...I just hate it, but it must be done. 

A special little test will be done tonight and on Sunday.  No snacks at all, well only "free" snacks.  We don't want to starve the kid!!  So no extra carbs, just meals and insulin to see how this combo and our tweaking is working.   We are doing all of this of course with the helpful 3rd eye of the CGM that Cara started wearing this morning.

BTW there were a lot of tears this morning before insertion.  We used the numbing cream but she was just sooo nervous, but she is tough and after a little snack and many toys and stuff animals she was ready to roll and of course she was all smiles after the CGM was inserted. 

She gets spoiled at the Endo clinic, I think that she would live there is she could.  And really what better place for a CWD to live then surrounded by amazingly loving and well trained nurses...that is, if they will take her?!?! lol 

I crush you...crush, crush, crush

And yet again I turn to you blog to get my anger and frustration out!!

Today was suppose to be a good day...isn't everyday?

But today ended up being the day my plans and a little piece of my heart was crushed by diabetes and my government.

First, My Plan:  I was planning to have Cara and us pumping over the summer.  What better time to do this right?  I have Cara home with me all day and night and I'm able to learn and tweak to my little heart content.  We have gone through pre-pump, we met and picked out our pump (Medtronic Veo) and today was the day we were doing to order it.

We met with Cara's endo last month and he told us he wanted to get Cara more "stable" before we started pumping.  Today was the day I was going to tell him "listen, we are as stable as we are going to get on injections it is time to pump"

Injections have not been working for us for a while now, Cara's A1C has been in the 10's for months and we have been working like crazy to get it down.  The problem is that a .5 increase of insulin is just too much for her, we are fighting dangerous lows all day long, then we back off and we are sky high all day and night.  We just can't get the right combo for Cara on shots and it is driving me nuts.

Next issue for the day, the dreaded A1C... how important really are A1C's?

ya I hear it all the time "don't worry your child's A1C is only a number" "it's not a report card" 

But guess what, it is now in Ontario!!

Today my government told me that I SUCK!! 

Today my government told me that I'm not doing a good job and because of that they are punishing my daughter. 

NO PUMP FOR US!!

You know why?

It seems that starting this JUNE all people who would like to apply for a pump which is covered by the Ontario government needs a A1C under 10 to be accepted.

So now in Ontario it seems this little number does mean a lot more!!

So what does an A1C mean to me?

For me it means that I can't get the technology that I need to properly manage my daughters diabetes.
For me it means that I have not done what I'm suppose to do in the eyes of some government official.
For me it means that my plans are a bust...all thanks to a lousy A1C that yes was over 10.

I'm not happy at all...can you tell?

So now we are stuck on shots, stuck on a treatment that is not working for us....obviously.  We can't get out of the 10's without causing insane lows BUT here we go again we are going to give it a try...AGAIN!

Tomorrow Cara is getting hooked up to a CGM so we can tweak a little here and there and keep her safe.  

Diabetes and this new A1C rule can SUCK IT...BIG TIME!!