Enter Mr. Pumpy Pump.

Beautiful photo by EL Photography

There has been so much going on that we haven't had time to write in weeks. We've been getting ready for the holidays, doing glamorous photo shoots and of course continue the street fight on Bella's diabetes.

The big news is that Bella was approved by her endo for an insulin pump. After a week or so of working with several companies and our insurance and the all to temporary medicaid  we managed to have her pump delivered on 12/3 and "installed" on 12/5. Bella got to pick a blue pump that has been named "pumpy pump" which is a fine name. She'll be happy to show him to you.

In case you are not steeped in Diabetes terminology the pump is a small device that is attached to Bella through a tube and constantly delivers small (basal) amounts of insulin 24/7 just like the pancreas would. This eliminates the need for the A.M. Lantus (long acting insulin shot). One shot down. After meals the pump allows us to Bolus or add extra insulin to cover her carbs and compensate for any highs. This eliminates the after meal shots! Now instead of having 5-7 shots per day, we change the location where the pump attaches every 3 days. Bella is super excited about this because no kid wants that many shots. We are also super excited about it because we don't have to give shots either.

So far the pumping has been successful except for two days ago when the site where the insulin enters the body was not inserted properly and no insulin was delivered for a few hours. We had a couple hours of extreme highs 600+, that we didn't know what was going on. We figured it out and within an hour she was back to normal range. No other problems. I think the dosage is about where it needs to be.

We've done a photo shoot with Erica at EL photography in Farmville also. Erica is the official photographer of all things Dolde and went above and beyond with this one. She really captured all kinds of stuff in this. Not your typical 3 y/o portrait.

Lastly we've been fundraising for Bella's dog and making progress. Thanks to everyone at the Craven County Christmas Craft show and everyone from Lenoir Community College who have donated. I can't express my gratitude enough. We are now over 55% of our goal.

Bella's Video

When we were in New Bern at Mumfest, we met a really nice man named Chris Howe. He has T2 diabetes and wanted to make a video on Bella. I think it turned out great and I still cry every time I watch it. Thanks, Chris!!!!

a different kind of night.

we had another bad night last night. bella didn't go low overnight, but went REALLY high. we checked her before bed and her BG was 176. in our minds, we are comfortable with her being a little high before bed. we gave her a snack, just as normal. i was really tired from yesterday's scary low BG incident and fell asleep early. nathan checked bella at 11pm and she was 526!!!! (for those of you who don't know, normal BG is between 90-120. also, BG over 500 was what put bella in the hospital before) he thought maybe it was a misread, so he checked again...437. he gave her a dose of insulin to being her down. i got up at 2am to bella screaming. i ran upstairs and checked her BG. again it was over 500. i gave her another dose of insulin to hopefully lower her BG. at 4am she was down to 293, which is still high, but not scary like over 500! i have to call the endo again today to figure out what we need to do for her. all this trial and error is making me crazy!

on another note, i finally was able to open up and vent about my feelings since bella was diagnosed in june. i had A LOT of pent up emotions and had a good, long cry.

we were trying for a dolde jr. #3 before bella was diagnosed. i had a miscarriage in March that was very difficult for nathan and i to deal with, but we kept moving forward trying. her T1 diagnosis had to put a quick stop to having another baby. both my pregnancies weren't easy pregnancies and i was terrified if i was preggers while standing in for bella's pancreas at the same time, something bad might happen with the pregnancy from stress. i was never able to mourn for the baby we lost, the baby that we could have had, bella's diagnosis and most of all, the loss of bella's innocent childhood. she goes through more finger sticks, needles and feeling crummy than most people will in their entire lifetime.

hopefully, the endo can make some suggestions today that will make the weekend easier on bella.

*fingers crossed*

~K~

I'm numb.

Things had been bearable (if you can even call it that) up until yesterday. I talked to the nurse at the Endo yesterday to find out why Bella's BG was all over the map. She made some suggestions to try for a couple of days. I was super stoked to try her ideas to make night time easier on Bella and me.

The first suggestion was to give a fatty snack before bed because the fat slows the absorption of the carbs and would help keep her BG level overnight. WRONG (at least last night). I checked Bella at bedtime and her BG was good. I gave her ice cream before bed and then checked her BG again before I went to bed. Still good. I got up at 2AM to check and she was REALLY low at 63. I had a hard time waking her and she was super cold. I panicked and gave her whatever I could get her to eat. She ended up having a couple of glucose tabs, a pack of smarties and half a pack of fruit snacks. Within 20 minutes she was back up to a low normal number BG, so I felt confident that I could let her go back to sleep and catch some sleep myself.

She ended up sleeping until 10AM because she was so tired from all the 2AM activity. We had a good morning and her brother had early release from school today. We went to pick up "Bubby" and run some errands. I was sure when we got home her BG would be low. It was actually high. I fed her lunch, gave her insulin and put her down for a nap. She woke up screaming 2 hours later. Nathan went upstairs to get her and she was inconsolable. He checked her BG and it was 84. Her eyes were glazed over and she wouldn't open her mouth so we could get any sugar into her. She was like a limp doll in my arms. She fought us until Nathan pinned her down and I rubbed honey on her gums. In a few minutes she came around and would eat a snack. I rechecked her BG and it's back to normal. I have never been that scared in my life.

Days like this make me so sad. I HATE diabetes. No one, however old or young, should have to deal with this awful lifestyle. It is so taxing on the entire family. The whole family has to live with diabetes, even if they don't actually have it. The stress is literally making me sick. I struggle with depression myself and I am on several medications to help with it. I am so stressed and anxious that I just want to climb in the bed until tomorrow. As some of you know, I have been on Weight Watchers and trying to improve myself inside and out. Days like today make it really hard for me to keep motivated. I feel sad and helpless that my sweet little 2 year old has to live like this, with the ups and downs, and with feeling crummy more often than not.

Diabetes, YOU SUCK.

A long overdue confession.

As you know, Bella was diagnosed on 6/19/12. It was a day we will NEVER forget as long as we live. The first month almost killed me. I thought every single day that I couldn't do..it was too much. As the days, weeks and months have progressed, things have gotten easier. NOT easy, but easier. Nathan and I don't even have to verbally communicate about what Bella needs, it's just become second nature.

When Bella was born in February 2010, I quit my job as a Licensed Vet Tech. I LOVED what I did and I still miss working with animals every single day. It was one of those universe preparing you for something larger moments, I suppose, because if I was still working when Bella was diagnosed with T1 in June, I would have had to quit. She needs 24 hour care. She sleeps in my bed every night so I can check her BG every 3 hours. It is an all consuming life to live. I had plans the beginning of June to volunteer at the Humane Society, but that didn't happen either. In the shuffle of day to day life filling in as Bella's pancreas, I realized that I have lost my identity. I don't feel like I am anything except Mason & Bella's mom, a pancreas and a wife.

Recently, I decided I needed to find myself again. When I look in the mirror I hate what I see. I stress eat and since this summer has been SO incredibly stressful, I put on weight. Instead of wallowing in self pity, I decided to do something about it. I joined a group of other T1 moms and we are supporting each other in weight loss. I started Weight Watchers October 1& I have done very well so far.  Not even one temptation and I have stayed strong and motivated! I am very proud of myself :)  I had wanted to be able to exercise as well, but I had terrible knee pain in my right knee, which made even getting up off the couch to walk through the house excruciating. I had a doctor appointment last week and got a steroid injection in my knee. Guess what? It's as good as new....maybe even better!!!! Now I am able to exercise! I have been walking our dog at least once a day, sometimes twice. We go for 30-45 minute walks. I started working out with weights today. I know the weight didn't appear quickly, so it's not going to just disappear quickly, but I am feeling better about myself, more confident and I feel like I *might* just be finding myself again! It's very stress relieving to be able to take care of myself for once. Remember moms, you can't be a great mom if you don't take care of yourself first!

And one final comment, Bella is going to sleep in her bed for the first time in 4 months tonight! Wish us luck!!!!

~K~

New Bern Fundraising Weekend Pt. II

Bella getting ready to spread the word.

Thanks to the guys at Mr.Tire (Colony Tire) in Greenville we were able to get to New Bern for the rest of the weekend after the bump in the road on Friday. They put in plugs, wires and rotor and the car was ready to go by closing time on Friday. It only took a couple of cupcakes and bracelets to make it happen.

We were outside in front of the convention center on Saturday and Sunday, we had access to a lot of the foot traffic going to MumFest, although we weren't technically part of it. Even though we were very disappointed that the Chocolate Explosion was postponed we still had a very productive weekend. We now have our display table setup and approach down to a science. We look forward to doing more festival type events now.

Bella and Skyler made an instant T1-D bond.

All in all we learned a lot and we met a lot of great people. We also have greater confidence in sharing our story and educating on T1-D as well as Diabetic Alert Dogs. It gets more amazing how many people's lives are effected by diabetes.

Bella met some great older kids that were T1-D and we got to see them bond almost instantly. On Sunday an 11-12 year old T1-D kid bought a bracelet and introduced himself to Bella as diabetic. Bella shook his hand got a huge smile and said "Me Bell-ha have 'betes too!" Which would've been the cutest thing ever if diabetes wasn't so dumb.

Aidan, Bella & Billy

We also met some great dog people as well. We met Lucas the Pit Bull Service Dog who has his own Facebook page. He was a big sweetie and when he's not helping his handler with her heart condition he's trying hard to change the perception of his breed. We spoke briefly with 'A Dogs Dream' about a future fundraiser together.

We also met the wonderful folks from Weller Kennels, out of New Bern who were our neighbors for the weekend. Really can't say enough about how kind and generous they are. They do awesome work with retrievers as well. We met Billy and the whole family fell in love with him.

Bella & Lucas.

Bella & Henry

Aidan & Bella

 The Doldes were almost out in full force as Uncle Adam, Aunt Nanny (Leslie) and cousin Aidan came down from Durham for the day to help out. It's really great to be within 90 miles of Doldes once again.

Last but not least our other booth neighbors were the Phi Theta Kappa from Craven CC. They were selling Marshmallow guns which kept us busy for two days. One of their members will be doing a documentary on Bella for a class project. Which we will post on here once complete.

All in all it was a very exciting weekend! Thanks to the efforts of all the volunteers and visitors. We had a great time. And a special thanks to the Family History Society of Eastern North Carolina for your sponsorship and your generous donation. We raised around $800.00 this weekend which puts us right at our 1-year goal for fundraising in a little under four months. Thanks to everyone for your continued support. We continue to be humbled by all of your concern and kindness. Stay tuned for announcements concerning the rescheduling of the chocolate explosion as well!

Look at the sea of Blog for a Dog T-shirts! Big special thanks to Kathie, Mary and Cousin David for all of your help and support.

We still have bracelets and T-shirts for sale if anyone wants one let us know!

Thank you, New Bern we'll see you next time!

Fundraising weekend in New Bern NC

Today marks the beginning of the first time we're taking the Dolde show on the road and into the public.

And it started off the way the Dolde show often does...

We've managed to get most of the Dolde show to New Bern in spite of this, however.

The MumFest doesn't officially start until tomorrow but early reports from our stressed out Mommy in the field indicate early donations, t-shirt sales and lots of T1-D info into the ears of lots of nice people. So if it's any sign of things to come we'll have a pretty good weekend.

Bella's holding up well despite lack of nap, a couple of lows that were quickly attended to. And it sounds like Mason didn't take enough stuff to do. All will be corrected hopefully tomorrow.

We've bribed the guys at Colony Tire with promises of bracelets and cupcakes and they'll do their best to get us all on the road for tomorrow.

We'll post pics of our table and what we're doing as soon as we can. Stop by and see us if you're near the New Bern Riverfront Convention Center.

As always thanks for your support...

-.n

Chocolate Explosion! Postponed.

 The Chocolate Explosion! has been postponed.
We will be in New Bern today with an informational table, t-shirts and bracelets.
Hopefully we will be there tomorrow and sunday as well. We're having some car trouble so this is up in the air. Hope to see you there between mumfest and the art yacht right by the dogshow!

PRESS RELEASE

FOR IMMEDIATE RELEASE AND DISTRIBUTION

The Craven Chocolate Explosion! will explode at a later date.

New Bern, North Carolina (10 October 2012) The Craven Chocolate Explosion! will explode at a later date. The event is being postponed due to circumstances beyond the organizers' control.

We desire and are committed to presenting the best show possible for both the public and the exhibitors to enjoy and we apologize that it cannot be done at this time as planned.

We invite you to come by the New Bern Riverfront Convention Center this Friday, Saturday, and Sunday from 10 am to 6 pm to meet Bella Dolde, age 2, and her family. She was recently diagnosed with Type-1 Juvenile Diabetes. We are raffling a chocolate lovers gift basket to
assist them in acquiring a diabetic alert dog. Type-1 Diabetics may have chocolate and sweets in moderation.

Also, visit our website, www.CravenChocolateExplosion.org, to learn more about Bella, sign-up for our email newsletter, and like us on facebook to enter for a "Craven Chocolate" cookbook and other prize drawings.

We thank everyone who has assisted us thus far and we look forward to seeing you this weekend to meet Bella and at the future Craven Chocolate Explosion!

Media Contact : Contact: David French, Craven Chocolate Explosion!
252.349.0405 • info@CravenChocolateExplosion.org •www.CravenChocolateExplosion.org

T-Shirts for Bella!

We just got two big boxes of T-shirts from Dan at CommonWealth Press.

Shirts are light blue with chocolate ink, printed on the back.

Here's the breakdown on shirts:

Child's S,M,L,XL - $12

Adult L,XL- $12  XXL- $15

If you need your shirt mailed it's $2 per shirt eastern and central time zone and $4 mountain and pacific.

If you want one let Kat know at 300pugarmy@gmail.com and she'll set up payment arrangements.

Finding help in the most unexpected places.

Ever since we decided to try to get Bella a Diabetes Alert Dog we have enjoyed great support from family, friends and strangers. I have mentioned that in several of these posts and am still in awe of the kindness and compassion of the people around us. This experience has renewed and invigorated old relationships with childhood, high school and college friends. We are not that far into it and the time and effort we've put in has been worth it just for those rewards. It's also been a very sublime experience. Balancing the dreaded thoughts of "what could we have done differently" and "how could we let our 2 year old get diabetes" are thoughts of "wow, what did I ever do to make this person I haven't talked to in twenty years want to help us."

What's been spinning in my brain lately is the unlikely partnerships we've struck up and how unexpected they have been.

The opportunity we have with the Craven Chocolate Explosion! is one of those unlikely alliances. It came about through timing and the wonderful mother / mother in law of some wonderful friends. What's more unlikely than a Chocolate Festival sponsoring a Type-1 Diabetic kid? It really is perfect. We have received so much support from this group and they are going above and beyond to spread the word and Bella's story. The Chocolate Explosion is being organized by the Family History Society of Eastern North Carolina. They have been so wonderful to work with and we can't thank them enough for choosing to help our family.

Perhaps the biggest surprise has come from the tattoo industry. Kat and I both have our fair share of tattoos, but we are not what you might call active in the tattoo community. About 18 years ago I completed about half of an apprenticeship before realizing that wasn't what I needed to be doing at the time for a lot of reasons. In early August I had an old friend, who I had lost contact with when he left to do his apprenticeship, ask if he could do some benefit tattoos for Bella's dog. We thought it was a great idea, but weren't really sure what to expect. As word got out it quickly grew beyond any expectation that we had. All of a sudden we were receiving encouragement from people within the tattoo community. There was custom made tattoo machine made and auctioned for Bella. And then another. Another studio is planning a raffle for her, and we've been told that a group of artists in Oregon is working on something. It turns out that within the big burly scary tattoo industry there is a very tight sense of compassion and family, whether you know them or not. We are forever grateful to Phoenix Tattoo Studio, Matt Mebane, Rob Rutherford, Aaron Moodie for all that you've done, and to everyone who is planning or have just reached out to us. We appreciate everything greatly. Thank you to everyone who was tattooed for the benefit or bid on a machine we appreciate that too.

The Tattoo Industry has raised close to $1800 toward Bella's dog in about a month.

You never know exactly where you can find help, support and inspiration.

-n.

By Request of Matt Mebane- Bella with the proceeds from her fund raiser.

Glitter Puppy by Rob Rutherford Machine Works

 Aaron Moodie Machines

Big News!

Big News!

We've been sitting on this one for a while...


We are pleased to announce that we have partnered with the Craven Chocolate Explosion! and The Family History Society of Eastern North Carolina. They will be donating $2 from each ticket to Bella's Dog!


Spread the word! We need patrons, vendors and volunteers!


Download the Press Release

A Little Bit Closer Everyday...

As we approach the 2 month anniversary of Bella's T1-D diagnosis we are getting closer to our overall goal for Bella's D.A.D. We have hit 17% of our total goal just from the kindness and generosity of our friends and family. We have also been selling the GASD bracelets and the tattoo fundraiser is still on-going until 8/31. Thanks again to Matt Mebane, Rob Rutherford and everyone at Phoenix Tattoo in Raleigh for the help.

It has been a hectic couple of weeks, I started a new semester yesterday and we are still trying to get a handle on this "new normal" thing. I'm starting to accept that we're there and it's not going to get easier or less hectic.

We have a few very exciting things coming up which we will announce as the details become more tangible. I just wanted to check in with a quick update and let everyone know we appreciate all of your support and kind words. Thanks for all your help.

-.n

Denied....

I just got off the phone with Social Security. I had a phone interview to apply for Medicaid. We got denied because supposedly we make too much money. What a joke that is.

I just don't understand how they can turn down a child with a disease that is life-long because of the parents' salary. As parents of a diabetic, you KNOW how expensive this disease is. Here is a breakdown of her medication costs:

Lantus: $40/month
Humalog: $40/month
Glucagon: $64/dose
needles: $10 for 200 (this doesn't last a month)
syringes: $10 for 200 (this doesn't last a month)
alcohol pads: $2.37/100
BG test strips: $20/200 (we have to refill every 2-3 weeks)
Ketone monitor test strips: no deductible...insurance won't cover them
Ketone urine strips: $10/100

Her specialist appointment is $81 per visit. this is her co-pay amount. Health insurance is such a joke. My husband works for the state and has the worst health insurance. Shouldn't state employees receive good benefits??

I'm so bummed. Hopefully, i can shake this crummy mood. Today is hubby's first day of fall semester, so he will be gone a lot more than over the summer :(

Thanks for letting me vent.
~K

Flash for Bella's Tattoo Fundraiser 8/7-8/31

This is the flash sheet for Bella's Tattoo Fundraiser. Thanks to Matt Mebane and Rob Rutherford at Phoenix Tattoo in Raleigh for this great idea.

From Matt:
Here's the designs for the Dog for Bella benefit. These will be $25 until the end of the month. 
I'm flexible as far as colors and stuff but have to be pretty strict about keeping to these 
designs, but will make some exceptions. Also, I don't own the shop where I work, so for simplicity this is cash only. Thanks

So, we've made a couple of appointments for the benefit but have plenty of time for more. And, because of how important I feel it is to get tattoos specific to the benefit and understanding that some people may not want a dog paw or a pets name tattoo I've come up with another way to help. I will be raffling off 2 gift certificates to get tattooed, 1 for $100 and the other for $60. R

affle tickets are $5 with all proceeds going to A Dog for Bella. If you get one of the special tattoos from the sheet of designs AND want to purchase a raffle ticket, I'll give you 2. Thank you guys who have set up times already to those who will. I've got a number in my head I'd like to raise, so let's do this!

Come by Phoenix Tattoo-Studio to purchase the raffle tix. We will sell them for the whole month and do the drawing Friday August 31st.

You can make an appointment with Matt, and he will accept some walk-ins...


Phoenix Tattoo Studio
1215 Hillsborough Street  Raleigh, NC 27603
(919) 834-8055

http://www.phoenixtattoostudio.com/cms/

http://mattmebanetattoos.com/home.html

tattoobattleground@gmail.com

Why a Diabetes Alert Dog? (Part 2)

This is the second installment of "Why a Diabetes Alert Dog?". These posts are really meant to fill everyone in on some of the new challenges we are facing and how the addition of a service dog to our family will help alleviate some of the new found pressures we are feeling.

I would like to dedicate this particular post to Mason, He is Bella's big brother, or "Bubby" as she calls him. Mason is about to go into the second grade, he is an avid reader (and sometimes a little too avid of a TV watcher), and loves Starwars, Legos and Ninjago. He is what we call a puzzler, he has an analytical mind and has questions about everything. (Really. Everything.) His preschool teacher nicknamed him "The Professor" and his Kindergarten teacher created an award for his unending curiosity and questioning nature.

Mason visits Bella in the Hospital Playroom

The reason I wanted to dedicate this post to him is because this disease has impacted him in different ways than Kat and I. I wanted to, in someway, acknowledge his sacrifice and hardships that I know he's going through because of Bella's T1-D.

As a seven year-old he has an understanding of how serious Bella's situation can be, but there are certain things that are difficult for him to grasp still. The biggest of which is food distribution. All of his life he's been able to eat when he's hungry. Now because of T1-D management there are only certain snack windows. I know this frustrates him having to be on his sister's schedule. He is trying but will beg for food setting off a chain-reaction which can be hard to get a handle on.

The biggest thing. The reason I dreaded writing this. The thing Mason would never admit. Is the attention. I have said "Not right now, Mas" or "Just let me finish this thing first" more times than I care to admit over the past month and a half. Mason doesn't get the donations or the webpage. He generally has to wait until we "check a guy" or get Bella her shot. Bella is under constant surveillance by us and as we are learning how to deal with all of this Mason has had to wait his turn. We have made an effort to not leave him out of Bella's care, and to be a part of the D.A.D. process. Maybe it's just parental guilt talking, but this must be the stinkiest summer vacation ever.

Mason and Bella adore one another. Bella does everything Bubby does, and we have put him to work in getting her to eat in a timely manner and do what she is supposed to. He has been the best big brother since the day Bella was born and will continue to be. He hasn't complained once about all the changes we've gone through and all the changes he's had to make.

This picture says everything about their relationship.

Although we try our best, here's hoping that once the D.A.D. is here and trained it will free up some more one on one time for Mason.

-n.

Tattoo Fundraiser for Bella 8/7-8/31

For People in Eastern North Carolina Matthew Mebane & Rob Rutherford are doing a unique fund raiser for Bella's dog, Thanks so much!

So, starting Tuesday August 7th, I will be doing $25 dog paw, diabetes awareness logo, or your dog's name tattoos with all proceeds going to help my friend Nathan Dolde and his family. I'll do them everyday I'm at work until August 31st.

 If you're interested in getting tattooed please email me here tattoobattleground@gmail.com. I'd really like to set up appointments for these and I'm sure some folks will be coming from out of town, but I'll try to fit them in as walk-ins too.

 Also, my good friend and co-worker Rob Rutherford will be building a one off tattoo machine dedicated to diabetes awareness we will be auctioning with the proceeds of that going to the cause. If you don't wanna get tattooed but would still like to donate, there is a link on the attached blog or you can come by the shop and give it to me and I'll get to the Dolde family.
Thanks everyone and please repost.

Phoenix Tattoo Studio
1215 Hillsborough Street  Raleigh, NC 27603
(919) 834-8055

http://www.phoenixtattoostudio.com/cms/

http://mattmebanetattoos.com/home.html

tattoobattleground@gmail.com

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.

-n.

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.
-n.
We are now at 11% 12% of our total goal, and 23% of our one year goal!

thanks to www.jlion.com for making this cool thermometer thing available too!

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.

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.

 -n.

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.

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.

-n.