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Friday, July 27, 2012

Welcome to Diabetes Island...

This Island is not fantastical in anyway, nor are the seats made of a "rich corinthian leather". 

This island is a small rolling island in our kitchen that has been renamed "Diabetes Island" and now accounts for a large part of our counter space."Diabetes Island" is the home base of sorts. That's where we now start our day, and that's where we now end each day. This is where the incoherent middle of the night parent conferences and support meetings generally wind up. "Diabetes Island" is where all the craziness of T1-D  happens. 
This is where you'll find the Humolog(tm) which is the fast acting insulin. This is stored in a Bambi mug. Why Bambi? Well, because deer are fast, of course. 

Next to Bambi is the (L)ittle Mermaid mug. The "L" word...Lantus(tm). Lantus(tm) is the (L)ong acting insulin that is given once a day in a (L)ower extremity (L)ike the (L)eg. 

We have a unicorn mug full of 30 gauge syringes (You just haven't lived until you've stood down the CVS pharmacist because the syringes you were given don't have half unit marks). Then there is a Snoopy mug full of caps for the quick pen syringes. These only use whole units. We also have exposed and safety needle caps. Then there is the alcohol swabs and the ever-present biohazard home sharps container. 

There's a cute TrapperKeeper(tm) with kittens on it. That's right a TrapperKeeper(tm) with kittens on it. This holds our daily log sheets and all the T1-D reference material we've accumulated. 

A calculator for counting carbs and figuring dosages. 

Test kit with Glucometer, test strips, and finger pricker. "Diabetes Island" is where Bella sits to "check a guy".  And of course the endless collection of paper towels spotted with blood. 
This photo of diabetes island was not set up or staged in any way. Sadly, this is how it exists in nature.

And then there is the notebook...

Surprisingly Lil' Hugs are a good low carb juice drink that Bella can have between meals and they don't effect the BG#levels much...

Everything Bella has eaten or drank for the past month is written down. We figure the carbs and then balance with insulin. Usually 1 unit for every 20g of carbs, except after lunch it's 1/30. Above is a sample from dinner through lunch the next day. This one includes 11 Blood Glucose checks in the 21 hour period. 5 injections of 2 kinds of insulin. (How many shots did you get today?) Oh, and there is another blood check for Ketones in the blood because we had a 367 BG# overnight. Ketones are another blog post.  

I hope you've enjoyed the tour of "Diabetes Island". This is yet another way our lives have been changed by T1-D.

Totally overwhelmed...

We are now just short of two weeks into the process of getting the D.A.D. for Bella. As the title of this post suggests we have been overwhelmed. We have been overwhelmed by the process of understanding Bella's disease, trying to keep a level of normalcy to our day to day existence, and mostly by the kindness and generosity of everyone. We have had help from childhood and high school friends, college friends, family, and complete strangers. As we are working on personal thank-you notes to all of you, I did want to post another thank you to everyone.
We appreciate all of the donations, kind words and offers of help we've gotten. We are completely humbled and grateful for all of you.
Please continue to share Bella's blog and Facebook page, we appreciate that too as it is really helps to make people aware of Bella's story.
We are now at 11% 12% of our total goal, and 23% of our one year goal!
thanks to for making this cool thermometer thing available too!

Tuesday, July 24, 2012

What is "normal?"

Please take a minute to read. This is what everyday of our type 1 lives are filled with... Tanya Parrott Moder wrote

If there was one piece of wisdom I could share with parents of children newly diagnosed with T1 it would be to stop asking when life is going to get back to being normal. It isn't...EVER.

Instead you have to redefine normal and acclimate yourself to your new life. It's not "normal" to stick your child and make them bleed 10 times a day, nor is it "normal" to give them 5 shots every day. Most people don't have to stop whatever they're doing to treat highs and lows, they don't have to leave work and rush to school because the nurse can't handle a situation. They will never understand the 2nd language we have come to speak full of phrases like "1 unit for every 7 carbs" or "25 with meals with 1 for every 50 over 130" and they most certainly don't have to wake up three times a night to check their child's blood sugar because if they don't they may find their child dead in bed.

"Normal" parents automatically punish their kids for acting up, but D-Parents learn quickly when our kids act up our first action must be to check their blood sugar because it might not be a temper tantrum or a sarcastic teen we're dealing with, but rather a dangerous blood sugar level.

We become walking, talking freaking medical encyclopedias and have to stay on top of dozens of research projects and new medications, because these may one day save our children. We have to get past our shyness and learn to go toe-to-toe with doctors and nurses who view our children as their disease or just another medical file...or worse yet confuse them with another patient.

And while doing all of this we have to assure our children that they aren't freaks, teach them to ignore the looks adults give and the taunting of other children. We must encourage them to grow and become productive adults and not use their disease as an excuse.

We must educate friends and family, school officials and any other person who is part of our children's lives. We must tolerate the ignorance of people who make statements like "Oh, she's not over that yet" and "well, if she would just eat better she wouldn't have diabetes" and we must stand firm against the idiotic gold diggers who promise miracle cures of rare teas or roots and berries just to line their pockets with our money.

We will have to explain that our children have an autoimmune disease and there is NOTHING we could have done to prevent this illness. We have to learn to stop beating ourselves up...because it really ISN'T our fault.

Our new "normal" become days filled with terror, anger, fear, and exhaustion...but we learn to cope because it's what we must do to save our children. and become stronger than we ever thought we could be.

Monday, July 23, 2012

On the way...

We are at 8% of our total goal after one week. Thanks so much to everyone who has donated to Bella's D.A.D. so far. We appreciate it more than we can say. We are overwhelmed by the kindness of family, friends and even strangers.

Thank you all so much.

Sunday, July 22, 2012

A Mother's Anthem

A Mother's Anthem
I am the mother of a diabetic child.
I don’t know what it’s like to go to sleep at night
and know for certain my child will wake up in the morning.
I don’t know what it’s like to sleep the whole night through
without waking up to do blood tests on my sleeping child.
I don’t know what it’s like to prepare a meal
without a calculator, measuring cups, and a gram scale.
I don’t know what it’s like to drop my child off at school
and know she will always be in the charge of someone who knows how to take care of her.
I do know what it’s like to force feed sugar in the middle of the night knowing I am sacrificing my child’s teeth to save her life.
I do know what it’s like to draw up insulin at 2 am and pray to God I’m not too sleepy to make a fatal error in judgment,
technique or calculation.
I do know what it’s like to sit underneath the dining room table holding my sobbing child, explaining to her, “No, we can’t take a break just this one time,” while I inject insulin into her already bruised arm.
I do know what it’s like to walk away from the pharmacy counter with an armload of supplies and realize I’ve just gone through another box of 200 syringes.
I do know what it’s like to help my child march bravely past the juice and cookies at the school reception that was supposed to be her reward for achieving Student of the Month.
I do know what it’s like to look into my child’s eyes and tell her she has an incurable disease and explain to her what that means, and then to be comforted by her when I’m the one who can’t stop sobbing.
I do know what it’s like to love and cherish my child every minute of every day,
To know that I may someday donate a kidney to her,
And that if she were in need of a heart, mine would be out of the question,
Because it broke a long time ago.
I am the mother of a diabetic child.

Saturday, July 21, 2012

Big Day Out...

We took our first major outing since Bella's T1-D diagnosis to the NC Museum of Natural Sciences. It's about an hour and a half there from Farmville. Everything went relatively well.
We got there about 11:00 and got to see some fish and whalebones, and the arthropod zoo. We stopped at about 12:00 to "check a guy" (this is our terminology for the finger prick / blood glucose ritual). After lunch we went through a neat room with butterflies, a sloth, some turtles and a corn snake.

After the bugs and stuff it was time for the dinosaurs. This was Mason's favorite part. 

Then it was Bella's favorite room, the Discovery Room. This was full of Bug and Dino costumes and lots of other stuff we never got to. Bella was captivated by the binoculars (and her big brother).

 We then got into the bug dress up...

As we were getting to about 3:00 things came to an abrupt end as Bella tripped over her ant costume and split her lip wide open. Blood everywhere and of course the moment of panic because T1-Ds (I know sounds like a terminator droid) are much more prone to mouth infection, so we'll be watching this closely.

We finished up with a trip to the gift shop and a magnifying glass and a Blue Dinosaur for Bella.

Bella sacked out on the drive home, until we had to "check a guy" and got a borderline low. So fruit snacks were administered and she fell right back to sleep.

All in all it was a good day, we can go out and function like semi-normal people. But we now have two excited kids and two very very tired parents.


Friday, July 20, 2012

Why a Diabetic Alert Dog? (part I)

It occurred to me last night that we're telling everyone we're trying to get a Diabetic Alert Dog (D.A.D.) for Bella, but no one has really asked why. Lots of families deal with Type-1 Diabetes everyday without the assistance of a D.A.D.

 So why is this so important to us?

This is a "gianormous" undertaking for our family. Adjusting to the diagnoses, learning about Bella's disease and trying to obtain a service dog in a span of 31 days (as of today). I've had to think about the why a lot, and there are lots of reasons.

Anyone who knows us knows that we are "animal people". A service dog would just fit into our family and settles into our general philosphies of the people / animal dynamic. I spent parts of my childhood with a duck that chased the school bus and a sheep that wore diapers for crying out loud. And I didn't even grow up in the country. So we get animals, we get their value to the family and all the responsibility that comes with them.

Here are the things that stick out to me, for our situation.

Bella is 2 1/2 years old, she is not able to articulate what she is feeling. An older child would be able to say "I don't feel good" or "I'm dizzy" etc. when a low is coming. Bella isn't able to do this as of now. When we asked the doctors about this, they gave us a list of signs to look for to catch a low:

1. Grumpy baby
2. Sweaty
3. Sleepy / Lethargic

That's a great list, but I got to thinking about the common signs of having a two-year old in North Carolina during the summer months around noon everyday.

1. Grumpy baby
2. Sweaty
3. Sleepy / Lethargic

A trained D.A.D. will be able to to tell the difference between a low and the terrible 2s (3s,4s,5s etc.) immediately.

Then there is bedtime...
Since Bella has come home from the hospital she has slept in the bed with her mom most nights. (which puts me on the couch with 2 dogs and 2 cats most nights, although I have developed a disturbing trend of falling asleep in the recliner with a banjo in my hands this week.) We are checking BG#s every few hours during the night. Mostly Mommy is doing this because of proximity and motherly instinct, but there are still incoherent late night "what do we do if...." conferences. The problem with lows at night is that they can lead to seizures and coma. Although these instances are fairly rare I challenge any parent who knows this is a nightly possibility to sleep soundly. Again, once trained the D.A.D. will sleep in Bella's room and will be able to alert us if there is a problem in the night.

There will be a part two to this post in the near future, but I did want to get some of our thinking as a family "out there".
In the meantime Bella made you some wooden cookies...

Thursday, July 19, 2012

One month anniversary...

Today is our 1 month anniversary of the T1D diagnosis. It has been an emotional roller coaster of a month! As sad as it seems, I *think* we may be getting a handle on our new daily "normal." Life sure can change on a dime...

Thanks to all of Bella's supporters, to date! I promise we will be sending out personal Thank-you's's been hard to find time to breathe up until the past few days! To all who have donated, THANK YOU!!!! The generosity has been amazing!


Wednesday, July 18, 2012

Thanks everyone!

Bella got a way cool hello kitty magic wand (and it makes a good microphone too!) and a princess jewelry box filled with goodies from Erin today. It made her day. Surprisingly good day in terms of BG#s, no drastic highs or lows for 24 hours. After 30 days we may be getting small handle on the day to day and insulin amounts.

Thanks so much to everyone who has donated so far, we have been overwhelmed by the kindness of friends and strangers alike. We should be at 10% of our first year goal by the end of the week.

Congrats to Guardian Angel Service Dogs (GASD) for winning the Toyota 100 cars for good yesterday. We can't wait for the new Highlander to roll into Farmville with Bella's Service Dog on board.

Tuesday, July 17, 2012

Type 1 Diabetes Educational Video

It's official!!!!!!

Yippee!!!! We are officially on the Diabetic Alert Dog waiting list!!!! Our deposit is paid and now on bring on the fundraising!!!

Yesterday was a horrible blood glucose (BG) day :(  We had A LOT of lows, which lead to LOTS of finger sticks. Thankfully, today is MUCH better!

If anyone wants to donate to Bella's D.A.D. fund, follow the link on the right of the page to Guardian Angel Service Dogs. All donations are tax deductible and GREATLY appreciated! You will get an automated receipt immediately, but in about 2 days, you will receive a personal "thank you" from Dan Warren, the head honcho :) He will ask what family your donation goes to...please reply "the Dolde family!"

We are still working on the Facebook page. It's slow going because there's not much time to breathe between Diabetes and life. Hopefully soon we'll be at some sort of "normal" for us!


Monday, July 16, 2012

Setting the fashion trends....

Always ahead of the fashion curve.

Art Class

Bella and Mommy went to an art class at the library today. It was geared toward bigger kids but Bella had fun coloring anyway. There was a low BG this morning that (Super) Mommy caught by sight, which led to two rechecks in the car on the way to the library.
Coloring at the library. Blue Baby & Brown Baby along for the ride. 

Ladybug Masterpiece in blue and red.

Sunday, July 15, 2012

First Post...

Bella was diagnosed with Type-1 diabetes on June 19, 2012. We immediately were sent to the PICU with DKA. After several days she was stabilized and we were given the crash course on diabetes and diabetes management.  Since Bella was released from the hospital we have been moving in a fog. Our entire world was changed within the course of a few hours. Now everything revolves around finger sticks, carb counting and injections of insulin. As we have slowly begun to adjust to this new world we have decided that a Diabetic Alert Dog (D.A.D) is something that would fit into our family and help to lift some of the burden of this experience off of us. Living with the repetitive fear of an overnight low is one of the most physically and psychologically draining things a parent could ever hope to face.

This is Bella. She has recently been diagnosed with Type 1 Diabetes.