World Diabetes day 2013...

Thursday was world diabetes day, we make it a big deal.  Diabetes is a big deal, it's always with us.  So when there is a day that is dedicated to educating people about this disease, we jump all over it.

Early in the school year in casual conversation I had mentioned something to E's teacher about how E's class last year supported her by wearing blue on world diabetes day.  E's teacher was immediately excited at this idea and had told me to remind her because she would love to participate in that. So Monday I contacted her and reminded her, I also emailed our new principal to see if she or any of the staff wanted to participate.  She was also super excited to participate and made announcements through out the week to the entire school K-5th for everyone to wear blue on Thurs. 

I actually had a field trip to go on with my son that morning and then lunch with my other daughter, and then E had an awards ceremony that afternoon for her straight A's and honor roll (that's right, proud mama right here) so I was at the school most of the day Thursday. 

It was so AWESOME to see everyone in their blue!!! K-5 all dressed in blue, all of the staff participated it was so great to see all of these kids come together for this cause!!! Take that Diabetes!!! 

So it came to the afternoon for E's awards and after the awards are over, E's teacher brought her and her DBFF (diabetic best friend forever) up in front of the entire 5th grade, she told everyone that these girls are who they are supporting by wearing blue, then she told them that she was proud of them and had them read their shirts that I had made for them last year that say... I need a CURE and so does my friend)  talk about a stream of tears coming from this mommy.  The principal then had all of the fifth grade gather together to take a picture in all blue, it was so awesome and will be a memory that she will have forever.  What amazing kids and staff we have at our school.  I wish I could share the picture with you but without the entire 5th grades parents permission, I cant do that. 

We also had a ton of family members wearing blue though out the country, painting their nails and sharing the cause with co-workers and getting them to wear blue. 

Thank you for participating in this day, we love you all!!!

Bionic Pancreas...

I hope all of you have had the chance to see or hear about the bionic pancreas that is being tested on PEOPLE...YES, PEOPLE!!! Not only that, but IT IS WORKING, I'm sure there are things that they are still working out with the whole system, but WOW!!!  So this is a general explanation of how it works,  You have a CGM, that is looped with an insulin pump, but in the pump there is also glucagon.  So as it catches your blood sugar going up and down it either gives a little insulin or a little glucagon, LIKE A REAL PANCREAS!!!  No carb counting, no highs or lows, you can eat like a normal person, you can excercise without a juice box or a 15g snack at your side!!! AMAZING!!!  Ok so I know that the diabetic supply companies often make alot of empty promises, but this is actually working in trials, and they are working really hard to get all of their trials in as fast as they can so that they can take it to the FDA and get the release, which they are hoping will be 2017 (yes I know there was just a big let down there for the time frame)  But this gives me hope, it's not a cure, but it is peace of mind knowing that this is out there and that my baby girl might be able to have that much more of normalcy in her life!!!    Here is also a video of an interview with one of the participants of the study and how she felt while wearing the system.  You can also check out her 7 day blog that she made while wearing the system here... https://www.myglu.org/articles/day_1_bionic_pancreas_study

ENJOY and KEEP the HOPE!!!

E's diagnosis week in pictures...

Oddly enough, we have picture of almost the whole week leading up to E's diagnosis.  It was such a busy week, we had a family reunion, my cousins wedding shower, my son stumbled upon a ground hornets nest and got stung on his face (which totally freaked me out), and we had taken the girls to see Selena Gomez, me and my husband and all of his family went to a country concert together. And all the while preparing for school to start the following week, yes,E's diagnosis came 5 days before school started.  All in all I was very thankful for this busy week at different places we had to go.  In order for E to use the restroom she had to come and tell me first, since we were in strange places and I had to go with her.  Up until this I had no idea how often she was using the restroom.  She was 8 and she is very private and so it wasnt like she told me every time she was using the restroom.  I look back at these pics, and I remember how drawn her face was, she was so thin, even though she didnt lose weight, she wasn't gaining either.  I think back to those few days before when we had no idea what we were about to be hit with, the changes and struggles that we were about to face just with in a matter of days. And we were completly oblivious up until the Selena Gomez concert.  We left the house, she used the restroom, we got downtown, a 45 min drive and she was pleading to use the restroom again, we were on a rain delay because the concert was outside and she went 4 times in 2 hours and then made us stop on the way home to use the restroom also.  That's when all the pieces started coming together... Well here it is our week before diagnosis...

 

 

Above: Here we are during our rain delay at the Selena Gomez concert. E is on the right.

 

 

 Remembering this moment with my husband without the worry of diabetes in the back of our minds.

 

Above: I believe this might have been the day before we went to the Dr.  She really was so thin.

 

Above: The fist day of school, we had now almost gotten through an entire week with diabetes.  Taking her to school this day was worse than the first day of kindergarten.  I really didn't want to leave her there.

 

Below:  And here she is today almost 2 years later... WOW I really need to remember how awesome insulin is... She is a healthy and intelligent girl and Insulin injections save her life!!!

 

 



Defining HIGH...

Recently I have been more aware of how I throw around my diabetic terminology.  More so with the word HIGH. 
A couple of weeks ago, I was going to breakfast with a couple of my girl friends and we were talking about our kids, and they are always so kind and concerned and always ask about E.  I went into how she was and then made the statement, that I hadnt slept alot because she has been HIGH all night.   They are all very aware of the diabetic Highs and Lows, but for just a quick second they got a strange look and I said HIGH BLOOD SUGAR.  We all laughed, they said they were aware of what I meant after 3/4 of a second but that the term HIGH did throw them back. 
This got me wondering how many times have I been out in public, with E and said you cant have that food right now you are to HIGH!!! Oh my goodness, the looks that we have probably recieved from strangers thinking that I am allowing and toleraring my 9 year old (now 10 year old) to activley take drugs.  I laugh and cringe at that thought.
We are all very vocal here about E's diabetes, we do not want her to be ashamed or embarressed of it.  She loves educating people about diabetes and has no problem letting people know that she is diabetic.  With that being said I guess, misunderstandings come with the territory!!!

High...then Low... where's the middle?

Surprise... Diabetes doesnt care what I think!!!  It took me a full year to accept this to be true, every high and every low, brought me to my knee's asking... What did I do? What can I do different? It was all my fault... Guilt ruled my day!!! 
This is why the DOC is soooooo very important.  If I wasn't able to see how diabetes affects other families, or have the ability to reach out to other parents in the DOC, I would be lost, heavily medicated, and probably in a padded room. 

So this leads me to the past 2 weeks.  We started with night time highs, no matter how much insulin we gave it didnt bring her down!!! Grrrr.... We made adjustments, not crazy adjustments, just one setting up.  Then of course after a week of fighting the night time highs, and no sleep,( not that I do much of that anyways since diabetes entered the picture) she begins dropping at night, 6 glucose tablets a night... OK the growth spurt or whatever game diabetes was playing is over, so we bring her settings back down to where they were, now remember this is just ONE SETTING... and now we are back to highs!!!! UGH!!!! Where is the middle ground?!?!? I'm trying really hard to not let this rule me, and do what I can and just realize that this is the nature of the disease. But this is stressful. Of course before this we had a month of beautiful perfect #s, and now that it is almost time for our Endo appt. to get the that wonderful A1C checked, diabetes is up to its old tricks.
When I think of diabetes I picture this akward little creature creeping around the corner, laughing at me through every high and low, knowing that he has done his job successfully, and making me feel inadequate is just a bonus for him.  And since diabetes doesnt sleep, it doesnt think that I should either!!!

Well we are off for a site change, new bottle of insluin, and alot of praying!!!

What do you say...

What do you say when someone comes to you seeking advice to determine if the symptoms that one of their children are having could be diabetes.  I often get people asking me HOW did you know? WHAT were her symptoms? WILL she out grow out it? And then every once in awhile I get... "These are my childs symptoms, do you think it could be Diabetes?"  I dont like to freak people out, which is hard to do when I am trying to educate people about this disease.  I try to tell people these are the symptoms,  VERY frequent urination,  LETHARGIC, a giant high blood sugar ATTITUDE, and UNCONTROLLABLE thirst ( I remember asking my daughter before diagnosis if she was really that thirsty after I caught her drinking out of the bathroom sink, and her reply is what sticks with me, "I dont know how to explain it she said, Its not that Im thirsty, it's like I have to have it (water)" Ugh... and that's when I knew. So as much as I dont like to freak people out, I also dont want to tell them what I heard from other people, things like.. your crazy, she is fine,  its hot out of course she is thirsty.  I tell people what the symptoms to watch for, I tell them go buy a $15.00 meter and just check, that $15.00 could save your childs life.  I by no means claim to be a Dr, but I do take the more proactive approach by telling people if its a concern and you are seeing these symptoms just check their blood sugar, it takes only a second.  I encourage them to speak with their DR.'s but I also know of many diagnosis stories that the pediatrician wouldnt even check for diabetes, because they did not believe that is what it could be, and within weeks maybe even days that child was in the ER fighting for their life.  So I find that it is a tight balance between not scaring parents but giving them proactive advice if they are seeing true symptoms of this disease.  I pray that through all the parents that approach me that not one will have to face diabetes in the life of their child

What does it take to keep your kid alive...

Just the other day we bought a new storage cabinet to keep  E's supplies in.  So we had to empty out all of her supplies while we put together the new one.  As I looked at the table I was overwhelmed at the amount of supplies needed to keep our daughter alive...

 

Now I remember, since E was my first child, that as a newborn, we often got harrased at the amount of  "stuff" we would bring with us whenever we went somewhere, I felt it was necissity, I felt like I had to have everything that makes her happy, with me at all times.   After a few short years of going places "stuff" free, we have found ourselves once again carrying everything that keeps her
happy  ALIVE!!!  This puts the word necissity into perspective for me.