Tuesday, January 5, 2010

2010... Bring it on

Happy New Year! and Happy New Decade! So much has changed since the last new decade. First, the world didn't end because of the Y2K bug (I work in the IT field, so this was discussed A LOT leading up to well, nothing:-)), then Adele was born in the early part of the decade. Then, Adele got sick and diagnosed with Celiac Disease, then I got diagnosed with Celiac disease and felt better even if I didn't really know I was sick then, Adele got sick again and got diagnosed with the ultimate multi-tasking game called Type 1 Diabetes, we were forced into playing this game including holding down your own child to give her a needle in the very first week (not much easing into this one and we even got to practice this fun needle exercise 4 times every day in the beginning), then we learned how to play using an insulin pump and even this year we got our hands on a new game weapon called a Continuous Glucose Monitor (CGM). Some things about the Type 1 game have not changed much since we started, but other things have evolved quite a bit thankfully. So, what's in store for this new decade that we have just begun? Better Type 1 tools? A cure? Adele will be 19 years old at the end of this decade. What will her life be like in 2020? Hopefully we can be a positive influence on her and are able to give her the necessary tools and knowledge to enable her to thrive and survive independantly... It's gonna be a long climb!

We've been on a CGM vacation this past week. Adele was with either myself or my wife (or both) pretty much the whole week so we (actually Adele) decided to go sensorless. Her skin is so "raw" because of all of the itching that we're starting to worry about running out of insertion spots. Skin real estate is at an all-time low! It felt good to let her skin heal by reducing the number of foreign objects inserted into her epidermis from 2 to 1 (as well as the accompanying sticker to hold the hardware in place). The weird thing is that the week without the CGM was actually the best as far as blood glucose control that we have had in a long time. She had a few lows mostly in the 3's (from 54 to 70 in US units) and not many highs. This winning streak was not due to us doing a better job. The body suddenly starts to cooperate and becomes "predictable". It just happens some times, kindof like a streak of nice, beautiful weather. You can't plan for it to happen, but you sure as hell appreciate it while it does.

We inserted a new CGM sensor Sunday evening in preparation for back to school. After a day of good readings, Adele's low blood sugar alarm went off a few times this morning during her Phys. Ed class. I have the feeling that she's going to voice her frustrations with the system when we get home tonight. I'm still not sure about the CGM, on the one hand it does give us a head's up before a low or high occurs, but it is soooo frustrating when it's off. Arrrggghhh!!! Today's highlights are:

January 5th, 2010 (during and after Phys. Ed)
9:00 am -> CGM reading was 6.5 (117)
9:25 am -> alarm went off, CGM reading was 4.5 (81) with on arrow down, gave a juice
9:45 am -> alarm went off again, CGM reading was 4.0 (72), meter was 8.7 (157)
10:25 am -> alarm went off again, CGM reading was 3.6 (65), meter was 7.5 (135)

This past weekend we were over at friends for supper. After the meal, one of their children just walked up to the fridge, opened the door and poured herself a big glass of chocolate milk. She drank the entire glass with no clue whatsoever of all of the complex work that her body (pancreas) was about to do to maintain a normal blood sugar. She didn't know what her blood sugar was before drinking the milk, how much active insulin that she had in her system, how many carbs were in the chocolate milk or what insulin to carb ratio that her body needed. She didn't care (and didn't need to), she just wanted a glass of chocolate milk. The parents didn't quite seem to notice or care either and just kept doing what they were busy doing. For most people this whole series of events is very normal and would go unoticed. A 12 year old girl who pours herself a glass of chocolate milk and drinks it, what's so exceptional about that? For me and my wife it made us really miss the days before the Type 1 game. We both noticed it as it was happening, and talked about it later when we got home when Adele was asleep. Since Adele is an only child, this doesn't happen in our household even if she is technically old enough to be able to prepare her own snacks without supervision. No one realizes all that their body does to keep their blood sugar in check until it doesn't anymore. The start of a new decade is a time to look forward and work towards a positive future, but damn that very, very simple act that most people take for granted made me miss the days before Diabetes...


Nicole said...

WOW I thought it would be only the mom's blogs that brought me to tears! lol and over chocolate milk :) It is truly amazing the things that we take for granted and don't realize it until it is gone!

Meri said...

My brothers and sisters live all over. When they come home to visit with their families and stay with my parents, I am always in awe of what the fill the fridge with. GALLONS of chocolate milk, Orange juice, regular Pepsi and root beer. UHG! It is like a ticking time bomb in there. I have to be careful not to let the boys peak, because their eyes would surely explode from the excitement of it all. I'm not upset that they have that diet...I'm just with you...they have NO IDEA how fortunate they really are to eat, and drink, and not have to think.

Lora said...

I am with Nicole... tearing up. In just one year, I have forgotten what it was like to not pay attention to the opening of the refrigerator door or the pantry.

I miss those days too.

Wendy said...

Chocolate milk.

She wants some...but it's so complicated and just before bed and...well, you get it!

Welcome to D blogging :)

Chris said...

First thanks for stopping by my blog and taking the time to comment and share.
It looks like i have some reading to do but this AM is not the time as i have Barney blaring in the background and a 2 year old with the attention span of...well..a 2 year old watching it - so my "dad" duties are on close watch early on a saturday morning.

I used to go fast and furious with my blog, keep up with people, stay in contact, relate, it is a very good tool. But lately as you can see i have not been on there but more my Crossfit blog.

The people i met on here were absolutely amazing. Emma was DX'd at 22 months and i needed a way to communicate with others and deal with the pain and whatever was going on emotionaly.
It was always (for lack of better words) nice to hear or meet people with T1. THe questions I had. Or just sitting there watching them how they just survive was an amazement to me.

You and your wife seem to have a really good grasp on this whole T1 thing. It is a f'd up disease that is for sure. Very confusing and NEVER the same.
We are VERY interested in the CGM and would have many questions for you about it. I do not think it is available in Manitoba yet but this is something we would like to know more about.
Adele is one beautiful little girl and looks like she has great people behind her.
Along with like you said the changes with ways to manage everything is actually pretty exciting for the future.

Those numbers you posted ... we would love to have those.
It has been a crazy few months. We cannot seem to have much control. Maybe it is her age (5) the excitement of her bday , christmas..etc.
But it has been really hard lately.
And you were a breath of fresh air for me. Thank you! Very good timing.
It drives me absolutey nuts when other kids can just go drink a juice box when they are thirsty or hot and get on with their life. It pains me that when Emma is thirsty....why the hell is she thirsty? Is she high? - is she low? Not "oh my its hot out here...she must be thirsty".
Diabetes blows.
Well the native is getting restless...so i better go see whats up.
I am looking forward with keeping in touch with you. Again i really appreciate you stopping by and sorry for this very very long comment.

Take care,

Joanne said...

I find myself watching the kids at other tables when we go out to eat and I am always so jealous of how easy it is for their parents. Want more fries? Sure, there you go. More bread? Ice cream for dessert? Yes and yes. I've had to stop myself from looking around because it makes me too sad.