Happy Holidays and a Santa Dance

Merry Christmas and Happy Holidays to my blogging family.  

May this Holiday Season bring you LOVE, LAUGHTER, WONDERFUL MEMORIES 

and most of all MERRY BLOOD SUGAR NUMBERS.

I am very happy to say that we have started wrapping gifts last night and I'm almost done my shopping :)  YES, this is a GOOD thing and a huge improvement from past years. 

and now time to party!  Enjoy a little Santa dance

Gingerbread House

Winner, Winner Chicken...UMMMMM...

Winner, Winner Gingerbread House?

I guess it does not have the same "ring" does it? 

Today was P.J. day for the last day of school before Christmas vacation at the kid's school and Cara won this :)

One very exciting little girl

Now for carb counting...

A1C Update On A Tight Rope

I know, I know, I promised to be happy if Cara's A1C was under 10 BUT really...REALLY... 9.9 ARE YOU KIDDING ME?!?! (go ahead you can laugh, it is kinda funny I guess...9.9) How does that even happen.  I guess I can be happy we are finally out of the 10's. ha...ha...ha (that is me laughing at my 9.9 ha)

The A1c was from a finger pick so I'm taking off a few points because I feel that a blood draw A1c is much more accurate.  So lets say 9.5 :)  That's a little better.

Whatever the number this is not GOOD enough...UGH!

So back to the drawing board and time to change it up a bit.  I need to change my mind set.  I will admit I have a fear and it is of LOWS.

This is a hard job, too much insulin and your crashing and chasing lows, too little insulin and your child has high blood sugar and high A1c's, each has its own negative and crappy side affects.

This is not as easy as it seems.  "Oh (they say) just count the carbs and bolus for them"...easy peasy right?.. "it's just a balancing act between carbs, insulin and exercise" (this is what they told me) REALLY? IS THAT IT? WHATEVER! How am I suppose to accurately balance something I can't see?  How in the hell are you ALL doing this? 

Imagine walking on a tight rope 25 feet in the air or better yet imagine placing your child on that tight rope and trying to help them navigate the tight rope...with your eyes closed...NOT FUN and GOOD LUCK because you or your child are going to fall.  It takes time, it takes knowledge, it takes patience AND maybe a little luck.  But you MUST walk this tight rope, as you make your way back up on that rope your getting stronger, your getting smarter, your confidence is growing.  Just then, some jack ass thought it would be FUN to manipulated your rope and everything has changed.  Now your rope is longer, it is thinner and it is angled!!  You will need to make adjustments, you will need to make last second decisions but as long as you don't give up one day you will get there.

One day I will get there...One day!  So new plan, we plan to be a little more aggressive, not too sure at this moment what that means or what that will bring but I must get this A1c down. We are also going to start saving for a CGM.  Image walking this tight rope with your eyes wide open now you can see when the twist and turns from that jack ass are coming.  That is what a CGM (continuous glucose monitor) will do for us and Cara it will open our eyes to what is happening with her blood sugars as it happens.  I truly believe this is how we make a huge change in Cara's A1C, this is the way I can get over my fear of lows and feel more confident being more aggressive. 

Do you think Cara would be sad if Santa brought her a CGM as her one and only gift? (that damn thing is expensive)  Ya, I don't think she would like that too much!!   

A1C Time

Once again it is A1C time and I'm freaking the hell out. 

As you may remember I did a VLOG of our last A1C results.  We have been sitting in the 10s FOREVER as in for about 1 year.  This is one of the main reasons we fought so hard to get Cara on a pump, better technology = better control and better A1C...right...I sure hope!!

The last A1C was our first A1C after only 1 month of pumping and I was SURE that we were going to see a difference in Cara's numbers...I was so sure I decided to video tape my excitement when the doctors told us we were finally out of the 10s.  This of course did not happen and I cried...scratch that I SOBBED.  It was a blow to say the least...

My brain tells me as well as all my wonderful DOC friends that an A1C is only a number that will give us information about what we need to do next for Cara.  But my heart tells my that this darn A1C is a measure of how GOOD you are as a T1 mom.

And this T1 mom is SICK of getting my A1C ass kick by T1D.

So today I will wait by my phone, fingers crossed with a butterfly floating stomach waiting for my husband to call and fill me in with what the Endo said.

UGH I hate this...   

MIO Wins

For those of you who have read THIS post I just wanted to update. 

The Mio sets have won.

Pink has won over white
A soft 90 degree cannula has won over steal
and an insertion devise has won over manual inserting the set  


Site change day is just so much easier it is so worth the extra money (I hope).  Less fighting, less yelling, less crying and a much happier Cara which means a less stressed me...which is good for everyone.

A Breakdown Kinda Day

(this post was written a few days ago)

Today was a different kinda day in our house.

Diabetes got the best of our emotions today.

As I was cleaning today I found one rocket candy, a poker that we don't use at all and 2 Tegaderm strips on my dresser among other things I will not mention on this blog :).  I collected it, and a smirky-smile appeared on my face thinking about Cara and then it HIT.

All of a sudden my eyes fulled with tears and an abundance of negative thoughts entered my head before long tears where rolling down my face as I placed the diabetes paraphernalia in their drawer.

This is not normal echoed loudly in my head:


People with children don't normally have candy stashed around the house as a life saving medicine.
People with children don't normally cause their children to bleed to ensure their child's health.
People with children don't normally stick life-saving computerized organs to their children.


I found myself lost in the negativity that diabetes CAN bring to her future.
I found myself focusing on the pain that diabetes DOES bring into our lifes.
I found myself absorbing the negative reality that diabetes is...AND I had enough!!

You can not live in that mind set, that is not living, that is NOT healthy.

Once and awhile I may visit that dark small corner of my mind but not anytime soon.

Cara has way more to offer then the small negative space that diabetes takes from her and I choose to focus on the amazement that my children and diabetes bring to me today.

I went along with my day as I usually do.

After school and dinner Cara came to me like she always does and asked "is it site change day"? Knowing all the while that it was.  "Yes" I said to her, "what site do you want to use today?  The pink Mio"? "NO"!! Cara shook her head. "OK, so the sure T then"? "NO"!! Cara said this time with a very sad tone.  As tears filled her eyes she looked right at me and said " I don't want to be diabetes anymore...it hurts" and with that I realized that I was not the only one lost in negativity today.

I told her I know but today is site change day and we NEED to pick one site, have a bath and then do a site change.  I gave her a hug and as she placed her head in my shoulder she whispered OK the Mio ones, there pink.

Some days are hard and some days we need to cry and we need to say NO or I DON'T WANT TO DO THIS ANYMORE as long as we don't let it eat us up inside because WE ARE SOME MUCH MORE THEN DIABETES.  I will never let diabetes take mine, my families or Cara's happiness away.

Not To Sure About the Sure-T Anymore MIO

We have been using the Medtronic Sure-T's sets since we started pumping.  There were two main reasons for that:

1. Our D team thought that the fine steal needle would be better for Cara because she is very thin and muscular therefore decreasing our chances of kinking what is a cannula on other sets.

And

2. We all thought that Cara would find the other sets with insertion devises too scary looking and therefore fight us more during site change then with the basic look of the Sure-T.

We have loved our experience with the sure-T's.  Cara still fights us to the death at site change time but other then that we have had no real issues.  However I have started to notices that Cara is often complaining about her site bothering her.  I sometimes get phone calls from the school telling me that Cara says her site is hurting.  I nicely tell them to get her back to class and tell her she is fine.  I never was sure if the site was really causing the pain or if Cara just wanted to take a nice stroll to the office.

Last Sunday we found ourselves in a bit of a predicament, we were out of sites...out of sure-T sites that is.  We had 2 brand new Mio site that our Medtronic rep had given to us when we started pumping.

Hmmmm...we thought about it for a few seconds, should we give it a try??

YEP!!  I jumped on YouTube and watched a young man insert a Mio site.  (I'm sure my D clinic will be very happy to hear that!!)


Cara was very excited about the whole pink set, she does have a LOVE for that colour.  As I got everything ready I started to panic.  I did not want this to hurt more then the Sure-T's, I was not 100%  on what I was really doing and once out of her bath the novelty of the colour pink was starting to wear off and the anxiety of the sound of the insertion device was becoming more of a concern for Cara. 

My husband held her down (hugged her tightly) as I bribed her with a trip to the dollar store if she would stop screaming and would hold still, that of course did not work!  Time was ticking away, with me not feeling sure of what the hell I was doing and Cara waving her whole body up and down I starting to freak the F out.  At one point my husband asked if I wanted him to push the button to dislodge the devise.  "NO, I can do this.  Just hold her still"  As I disinfected the area, found "the spot" and closed my eyes (YES I CLOSED MY EYES) I pressed the sides of the insertion devise and POP the Mio was in. Thank GOD!! I thought I was going to break down and cry.

Once everything was said and done Cara was over it and she said that it only hurt for a second.  Of course she couldn't wait to show her nurse her new PINK site at school tomorrow.  I asked her if it felt better then the sure T's and she said YES, I was shocked about that.  And guess what, it has been two days and I have not had a call from the school saying Cara's site is bothering her.

So here is the big question do we switch?
and here is the big answer...I don't know?

It has only been two days on the Mio and I will have to see how the second site change goes before I'm completely convinced that she likes that Mio better then the sure T's.

Another issue is the cost.  On the Medtronic of Canada website

A box of 10 Mio's is $215.00

A box of 10 Sure T's is $168.00 

We do site change every 3 days, which means for people that don't know a new site every 3 days (or sooner if there are any issues with the site)

So there is about a $500 difference a year...

Ummm at that price she better be the best behaved diabetic child EVER at site change.  Next site change is Wednesday (tomorrow) we will see how that goes...

I personally really liked the Mio :)

This Santa and CFRD (Cystic Fibrosis Related Diabetes)

My cousin Kurtis is funny...OK, OK the kid is hilarious and has started a YouTube channel that I have been wanting to share with everyone BUT he's a bit...how do you say...Edgy, crude (sometimes) and a bit... well, controversial.  But when I saw this skit I thought it would be a great way to educate people on CFRD and CF since "Santa" brought up diabetes. 


This Santa is my cousin Kurtis, this Santa has Cystic Fibrosis and this Santa knows about CFRD.

CFRD or Cystic Fibrosis related diabetes is diabetes that forms due to complications from Cystic Fibrosis.

The Origins of Christmas, how it all began.  

(note to those with sensitive ears, there are a few BAD words)

 

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure as of right now for CF. CF is a multi-system disease, primarily affecting the lungs and digestive system. In the lungs, where the effects of the disease are most devastating, a build-up of thick mucus causes increasingly severe respiratory problems. It may be difficult to clear bacteria from the lungs, leading to cycles of infection and inflammation, which damage delicate lung tissue. Mucus and protein also build up in the digestive tract making it difficult to digest and absorb nutrients from food. Large quantities of digestive enzymes (average of 20 pills a day) must be consumed with every meal and snack. As improved therapies have helped to address the malnutrition issues, virtually all cystic fibrosis-related deaths are due to lung disease.
(information taken from Cystic Fibrosis Canada)


CFRD is extremely common in people with CF especially as they get older. CFRD is found in 35 percent of adults aged 20 to 29 and 43 percent for those over 30 years old.  Diabetes in people with cystic fibrosis combines the characteristics of both type 1 and type 2 diabetes. The build up of thick secretions in the pancreas eventually damages the hormone-producing cells, causing insulin deficiency due to scaring in the pancreas. In addition to insulin deficiency, people with cystic fibrosis often wind up with insulin resistance because of:

• Chronic infections
• High levels of cortisol, a hormone that the body secretes in response to stress
• Frequent exposure to corticosteroids which are anti-inflammatory drugs sometimes used in the treatment of lung conditions that mimic the action of cortisol.

The symptoms of CFRD are the same as the symptoms for any type of diabetes:

• Excessive thirst
• Frequent urination
• Excessive fatigue
• Unexplained weight loss

The problem is that all of these symptoms mostly occur in people with cystic fibrosis, whether or not they have CFRD. This makes early detection difficult.


CFRD is usually treated with insulin.  

I clearly remember when Kurtis was born and I clearly remember when he was diagnosed with CF.  I will never forget the sadness and devastation that followed and I never want to forget the love, the hope and the belief that one day we will find a cure for Cystic Fibrosis. 

Cystic Fibrosis Foundation
 Great Strides  

   

A Few Bullet Points Made This Week

Once again we found a way in postponing Connor Ryan's blood work for TrialNet (he's not complaining).  If you don't remember he has tested positive for 1 antibody during his TrialNet screening so they asked for a re-test to confirm.  For some reason it is taking us forever to get him there...UGH soon, I promise!!

AND

Once again I reaffirmed a trend in Cara's diabetes.  Diabetes and tap dance makes for a low Cara during the middle of the night.  However for some reason I keep on forgetting all about this trend that I rediscover week in and week out.  Every Thursday night at my 2:30am check I seem surprised with the fact Cara is low, with a "FUD" and an eye roll I run and grab sugar.  What is the good in realizing these things if your not going to use the information. 

Note to self for next Thursday: REMEMBER to add a few extra carbs during bedtime snack and Cara will be all set.  Maybe I should tie a ribbon around my pinkie?  

BTW

I totally think I just made up a new diabetes term FUD...F U Diabetes :) LOVE IT and it makes you feel soooo good saying it.  Everybody now FFFFUUUUDDD!  

Oh ya,


Just to make this week even better my 3 year old potty trained Cody has peed on my floor twice this week (YES my dear Laura, you are not alone).  The first time he was wearing roller blades (yes, my children like to roller blade in my house) which limits his speed tremendously.  He is very cautious and slow on these things and he was just unable to make it.  However the second time I have NO IDEA what that kid was thinking because he was on the computer playing games one minute and peeing in his pants and on MY FLOOR the next.  Why bother to pee in a toilet when you can finish your Buzz and Woody game while peeing on the floor??

On the topic of Woody...could you NOT have found a better name for a child's toy "Cody where's your Woody?"  "Cody grab your Woody"  "Oh Cody, you love your Woody" " Cara can you grab Cody's Woody" Ya great job Toy Story!!

OK back to diabetes:


I have "met" 2 wonderful and local families with children who were newly diagnosed this week.  One family has a little girl the same age as Cara and I'm sure we will met up for a play date soon.  Cara loves seeing all her computer t1 buddies, she knows everyone by name and we talk about them all the time but I would love for her to have a friend that she can play with IRL with diabetes.  Both of these families were in my thoughts a lot this week.

Lastly something new:

I got a phone call from the school the other day telling me that they saw blood in Cara's tubing.  Well, they said line but meant tubing.  I was thrown a bit for the first 2 minutes of the conversation something about Cara and blood in the line, I had no idea what was going on.  But I finally realized "the line" was her pump tubing.  This was the first time this has happened to us. Of course I relied on my facebook peeps to give me some insight on ideas of dealing with this.  By the time she got home however the blood was gone and her blood sugar was in range with no issues soooo I respectfully ignored my amazing facebook peeps advice (love you all) to pull the site.  I kept a very close eye on it for the rest of the night and we had no more problems and no more blood.??? I have no clue?? 

Which also reminds me we need to order some more sure T site.


Hope you all have a wonderful weekend.

Food With Personality

I know as a person that is affected by diabetes we look at food differently then others but this is ridiculous...

Chocolate Swirl Cheesecake or Sammy (as I liked to call him) and he was D.E.L.I.C.I.O.U.S 

Looking For Cara's Data

One night my husband and I were sitting on the couch, kinda watching t.v. but mostly brainstorming about the changes that we needed to make to Cara's insulin.

That is the one thing about being a parent of a child with type 1 diabetes, there NEVER really is a time you are not running bg numbers through your mind, evaluating the day, count/adding/dividing/calculating carbs and insulin ratios, thinking about supplies needed (which reminds me we need more sites and insulin) or preparing for the day ahead. Your time is no longer "your time" it is now shared and many times over taken with type 1 diabetes. 

We both were throwing a few ideas back and forth without any numbers in front of us and without the real information that you need to look at and study to make this important change and it was getting very frustrating.

I had just downloaded Cara's pump on our Medtronic Carelink program so I said to my husband in my frustration  "can you just go get my computer and look up Cara's data? I really need help"

He paused and looked at me with this wicked smirk on his face "is there something you need to tell me?"  he said.  I just started laughing because it totally sounded like I said "can you just go get my computer and look up Cara's Dada? I really need help"


There are moments of funny with D, thank God!!

Where's Cara?

On Friday Cara came running threw the door yelling for me "mommy, mommy" she said

Panic was my first reaction (as usual when Cara is not right by my side)  but by the tone and excitement in her voice I soon calmed myself down and was all smiles waiting to see what she was so happy about.


and the following conversation went as followed:

Cara: "mommy I got my class picture"  (she had the biggest smile on her face as she pulled out the picture to show me)

Me:  "You did, let me see"

Cara: "OK...Oh ya, but I'm not in it"

Me: "What?"

Cara: "I'm not in it!!!"

Me:  "Why not?"

Cara: "Because I was taking my blood sugar"

Now before you get all mother bear at the school like I was about to (trust me mama bear was about to explode when I heard the first part of this conversation) you must hear the whole story.

It seems that someone finally realized that Cara was not in the first picture (kinda weird but whatever) and asked the photographer to take another picture of the class with Cara in it.  He did, and the teacher made it a point to tell him that they needed to have the second picture printed, the one with the WHOLE class in it.

Well I guess he forgot and the whole class received the picture without Cara.

Cara reassured me not to worry, her teacher was going to take care of it.

The teacher reassured me not to worry the secretary has made a call to the company she wrote in Cara's agenda.  

So I'm not worried... just hopeful that D does not take the simplest of pleasures and memories away from Cara's grade 1 experience.