Remembering

Today is Brooke's diaversary.  Four years ago today we were told that Brooke has Type 1 Diabetes, and that our lives, and especially Brooke's life, would never be the same.

She blows me away with her willingness to deal with it all.  She's a rock star.  The tantrums and bits of sadness are few and far between.  She just rolls with it.  She's one of my heroes.

Brooke was diagnosed pretty early, before she got too awfully sick.  Don't get me wrong, she was still very sick.  But because we caught it early, she was able to avoid some of the scariest, most debilitating parts.

Read the list of symptoms below.  Really look at them.  Be familiar with them.  File them away.  I'm convinced that somewhere in the back of my head I knew most of these symptoms added up to Type 1 Diabetes.  I believe us realizing what was going on was the first step to an early, accurate diagnosis.

It was the first step to getting help.  It was the first step to Brooke feeling better.

Symptoms of Type 1 Diabetes:

• Extreme thirst
• Frequent urination
• Drowsiness and lethargy
• Sugar in urine
• Sudden vision changes
• Increased appetite
• Sudden weight loss
• Fruity, sweet, or wine-like odor on breath
• Heavy, labored breathing
• Stupor or unconsciousness

Call your doctor immediately if one or more of these symptoms occurs in you or your loved one. It is extremely important to receive medical attention—misdiagnosis or leaving your condition untreated can have tragic consequences, including death.    Source: JDRF


Today, I'm reposting what I wrote 4 years ago.  It tells the story of how Brooke was diagnosed. 

**Repost from Feb 18, 2011**

Well, hello insulin.

Remember when all the kids had the flu a few weeks ago? Remember how I declared Tamiflu dead to me because Brooke was so sick with it? Well, turns out, maybe it wasn't the Tamiflu.


It had been three weeks and Brooke still wasn't over the flu. She wasn't back to herself. She had no energy. The little Brooke spark was gone from her eyes.


Then we started noticing that she was drinking. Alot. And going to the bathroom. Alot.


And the emotional roller coaster was getting a little rough. One minute fine...the next minute snipping...the next minute fighting with her sister over nothing...the next minute...sobbing.


Her appetite was crazy. This, the child I felt lucky to get 2 good meals in her tummy, was eating me out of house and home. She was finishing her lunch and if I happened to be subbing that day, digging in to my lunch.


And then the headaches started. Severe. Making her feel so awful she didn't want to participate. Even if it was fun. And the vomit came with the headaches.


And even though her appetite rivaled her 11 year old brother's, she was loosing weight. Her clothes were hanging on her.


Wednesday night at church she had another sudden headache with vomiting. I had an appointment to see the doctor next week, but decided that since the headache was so bad, she needed to go in the next day. I had to work, but Honey was in town, so he was going to take her. He wanted a list of symptoms from me to make sure he didn't forget anything. I sat down Thursday morning to write down everything I'd noticed.


When I saw it all in writing, I knew what the doctor would tell us.


I cancelled my day and headed to the doctor at 9:15am. It didn't take long for them to tell us that she had Type 1 Diabetes and refer us to an endocrinologist. (Which, by the way, I spelled that without using spell check.) We were sent straight to the hospital and Brooke was admitted immediately.


It's been 36 hours since her diagnosis. 36 hours makes a huge difference. Her lab numbers are back to where they need to be. Her blood sugar is being tweaked and managed. The color in her cheeks is normal. Her body is being re hydrated. The Brooke spark is back in her eyes.
Honey and I know more than we ever wanted to know about insulin and pancreases and carbs. And we still have a lot to learn.
But for now we'll just take it one finger prick at a time.

Just the facts, Ma'am

Today is World Diabetes Day.  It's Dr. Banting's birthday, and in 1923, he won the Nobel Prize for his discovery of insulin.  Every day since February 17, 2011 insulin saves Brooke's life.  So we celebrate.  Dr. Banting, I'm glad you were born.  Thank you for saving my daughter's life.

Diabetes is a complicated thing.  I get that.  There are lots of different kinds of Diabetes.  There is lots of misinformation out there about Diabetes.  Doctors and patients and researchers are learning new things about Diabetes every day.  It's hard to keep up.

I'm not bitter.  I used to believe some of the myths, sometimes I still do.  I learn something new about Diabetes every day.

I'm sharing some good information about Diabetes.  It's the best information we have today.  Not because I'm condescending, but because I want to educate.  All of the points are real life questions or comments that people who know and love our family have brought up since Brooke's diagnosis.  They asked because they care and want to understand.

**The explanations I'm about to give are the most basic ways I can think of to give helpful, relevant information.  I know that Diabetes is not as cut and dried as I am about to make it seem, but for non-Diabetics, it's some good working information.**

Q:  Does she have the bad kind of Diabetes?
A:  There are several different kinds of Diabetes.  The two most well known kinds are Type 1 and Type 2.  Type 1 is an auto-immune disease.  Brooke has Type 1 Diabetes.  She was born with antibodies in her blood that attacked and killed the cells in her pancreas that produce insulin.  You must have insulin to live.  Her body doesn't make it's own insulin, so we have to give her insulin.

Type 2 diabetes is basically defined by the fact that your body makes it's own insulin, but for some reason your body doesn't use the insulin it makes effectively.  There are many reasons why your body doesn't use the insulin it makes.  Many.  It is not just weight, exercise, and diet.  It is not just a fat person's disease.  Remember the cholesterol commercials with the beautiful, athletic, otherwise healthy looking people?  They looked perfect on the outside, but then their cholesterol number would come down and make them trip or spill or something.  Think that, except with Type 2 Diabetes.  Anyone can develop Type 2 Diabetes, even skinny, active people.

Q: Did she get it because she ate too much sugar?  Got too fat?  Has family members that are too fat?
A:  No.  She got it because her pancreas quit making insulin.

Q:  Will she eventually grow out of it?
A:  No.  The cells in her pancreas that she needs?  They are dead. DEAD.  One doesn't grow out of dead.

Q: Can't she just take a pill?
A:  No. What Brooke needs is insulin.  If you were to ingest insulin through pill or liquid form, your stomach acid would destroy it before it got to your cells to do its job.

Type 2 Diabetes is sometimes treated with pills, because a pill can help a body use the insulin it already makes.

Q: Should she eat that?
A:  My snarky answer to this question is:  Should you eat that?
My kind answer to this question is:  Type 1 Diabetes treatment does not require being on a diet.  We can all agree that it has been suggested for all human kind to eat healthy and exercise regularly.  These suggestions apply to Brooke as much as they apply to me, or you, or the next door neighbor.

BUT, it may seem like she is on a diet because what you see us doing is counting carbs.  The fact is that Type 1 Diabetes treatment does require varied insulin dosages.  We have to give her certain amounts of insulin depending on the amount of carbs she eats.  The only reason we count carbs is to have a number to put in our math equation to figure the insulin dosage she needs.Yes, we do complicated math every time she puts food in her mouth.

Go ahead, let her have the cupcake!  I can do the math.

Q:  I have a friend that cured his Diabetes with this health supplement.  Don't you want to put Brooke on it too?
A:  This one is tricky, y'all.  Because, yes!  Of course, if there was a cure for Diabetes I would want Brooke on it.  But the hard facts are...there isn't a cure.  There just isn't.  I know that you just want to help because you love her.  I know that Dr. Soandso said it could be done.

But here it is:  Brooke's body doesn't make insulin.  Humans need insulin to stay alive.  The part of her body that makes insulin is dead.  A cure would be figuring out a way for her body to start making the insulin she needs again so we wouldn't have to inject her anymore.

Here is what I think happens with all these "supplements".  Brooke's diet is as balanced as any normal 10 year old, and lets say that an average day is 150g of carbs.  Doing the math would tell you that she would need about 10 units of insulin a day to cover the food she eats.

So, let's say that we started one of the supplements and replaced a normal meal or snack or whatever with the supplement.  Because the supplement is lower in carbs, her carb intake goes down, and her average intake is 120g of carbs a day.  Using the same math, that would reduce her insulin intake to 8 units a day.

She is still taking insulin, just not as much.  Reducing the amount of insulin needed is not a cure.  It just means she is taking less than she was before because she is ingesting less carbs than she was before. 

And also:  Insulin isn't bad.  All the normal people make insulin inside their bodies every day.  The insulin we give her saves her life.  It is not our goal to "get her off of insulin".  Unless of course a real cure is discovered, her body starts making its own insulin again, and she doesn't need to be injected anymore.  Then I'll make your head spin with how fast we "get her off the insulin".  

OK, your eyes started glazing over several paragraphs ago.  I'll stop.  If you ever have a question and want an honest, as accurate as possible answer, just ask.  I won't judge or make fun or get snarky.  I know you're just curious.  And I want to get good information out there.  It will help us all.

Keepin' It Real, Yo.

We are cleaning and purging some closets at our house.  I found the tote bag that we used to put all the stuff we received at the hospital when Brooke was diagnosed.  Pamphlets, hats, magnets, business cards, books, papers, "tips and hints", guides.  It's been in the closet for almost 2 years.

(No it hasn't.  It spent a few weeks on our dinning room table.  Then it moved to the closet.)

The prescriptions and daily supplies we needed sat on a corner of our kitchen counter for about a month.  It took that long for me to come to terms with the fact that this stuff is never going away.

Never.

Then I cleaned out a drawer in our kitchen and a shelf in our pantry to store all our stuff.  And then I decided that I would gladly deal with all the extra stuff for 200 years if it meant keeping Brooke healthy and thriving.

Remember this?  It was near the beginning of our D journey.  Oh, sweet order and control.

Today?  This.

Because, now?  Two years later?  Brooke is a little more in charge, and I am a little less in charge.

And this?  This is how she rolls.



She must be her father's child.

Love the one you're with

Wow! OK. This new blogger is going to take some getting used to. I logged on today for the first time in several days (ahem) and...Hello! new Blogger.

Yesterday was Brooke's quarterly Endocrinologist appointment. It was good! Probably the best one we've had. 

So many people talk about having a big happy family reunion every time they visit their Endo's office. I've never really felt that way about ours. Maybe because our CDE was out sick when we were trained in the hospital. Maybe because we were handed off to another doctor 3 months in to this journey when our original doctor moved. 

Whatever it is/was, it was better this time. There was a connection with the CDE that hadn't been there before. There was useful advice from the doctor that had never been given before. They gave us stuff...without us having to ask and feel like a mouch.  Sorry, gifts, every once in a while, help.  I'm human.

After searching high and low and asking everyone under the sun and getting no response, we got a copy of the Disney book with Coco the Diabetic monkey.  (Yes, Virginia, there really is a Coco book.) 

We also got a copy of a book of yummy looking recipes.  Each recipe already has the nutritional information calculated and printed...including carbs!  Score!

 

Brooke already bookmarked page 66, "Belle's Better Brownies", and said that if I had extra time today, she would like me to try that recipe.  They only have 11g of carbs.  I've never heard of such a thing!  But, Disney says they're tasty, so it must be true!

And to make the visit even better...her A1C was down another .4 pts.  It feels good to be slowly creeping down instead of slowly creeping up.  To me it means that Brooke's little eyes will be around to sparkle for a loooong time.

I had told several friends that I was giving this Endo's office one more visit and if it wasn't better, we were going to spend some time this summer exploring our options.  I think I'll put that on hold for a bit and concentrate on making some of those brownies.

The reasons I'm a hot mess...at least this month.

February...wears me out. We have a love/hate relationship. It blows in, parties me up, twists my nerves in a knot, and then leaves me completely empty and most of the time sick.

Bubba's birthday was a couple of days ago. He's 12.

My oldest is twelve! We let him get a F#ceb**k for his birthday. (See what I did there? I disguised how I typed F#ceb**k to keep them from finding out that we let Bubba get a page before he was "officially" old enough. I know, I'm pretty sneaky.)

I'm friends with my son on F#ceb**k. I'm having a hard time wrapping my brain around that.

Yep, that cute little Spidey is turning 12. I should put that picture on F#ceb**k.

It was the first time in 7 years that I didn't bake treats to take to school to share with his friends. We're down to 6 years until he goes to college. I got a little weepy just now typing that.

Last year he had a friend party in addition to the traditional family party. This year we just did the family thing.

Last year, for the friend party, I made my SIL's Milky Way Cake. It sounds exactly like what it is...a cake made of several Milky Way candy bars.

Bubba's birthday falls right before Valentine's Day. On top of all the birthday celebrating there is Valentine celebrating. Friday the girls had their Valentine parties at school. This was the first year Bubba hasn't had a Valentine party in 7 years.

I missed Bubba's last Vday party last year.

Here's a picture of the girls the morning of their Vday party last year. It was 6 days before Brooke's T1D diagnosis. Can you tell which one is Brooke?

Last year Brooke wanted a special dress to wear to her Vday party. My mom agreed to make it, so they shopped together for fabric and a pattern. Once Mom got the dress ready for a fitting, Brooke tried it on and Mom needed to take it in...a lot. It was waaay too big.

She was so excited to wear her special dress. I stopped by her party first and she was loving every minute of it, eating every treat she could get her hands on. I left her party and went next door to Mary Tutu's.

When I left Mary Tutu's party to go to Bubba's, Brooke stopped me in the hall and told me she had a headache and her stomach hurt. I thought she was mad that I wasn't checking them out of school after the party. I told her she was fine and to get happy. She couldn't even hold it together for a class picture.

I headed to Bubba's party. As I was walking in the door of his classroom, the phone was ringing. It was the nurse. Brooke was throwing up in her office.

She hasn't worn her special dress since.

We thought it was a bug. In fact, Bubba was nauseous a few days later so I kept him home from school thinking it was the same bug. It wasn't.

Five days after the Vday parties, Brooke had another episode at church during Bible Class. She couldn't pull it together enough to perform her puppet show.

The next morning, February 17, was her diagnosis day.

Here she is with Will. He was the nurse that admitted her and stayed with us during those first hours. He was wonderful!

We were lucky. The IV fluids and beginning her insulin treatment did wonders for our little starving, dehydrated, weak, out-of-sorts Brooke. She was poked, and poked, and poked some more. It took 3 days to clean out the keytones. She never complained.

Eventually, she gained 11 lbs. Eventually, the spark came back to her eyes. Eventually, she gained some fat so we would have places to inject her insulin. Eventually, she was able to return to her mostly normal life.

This February is already better than last February. It kinda' snowed this morning. If I don't think about it too much, I can enjoy less baking for school parties as Bubba gets older. I made it through this year's Vday parties. I wasn't sure I would be able to hold it together. I just jumped in and stayed busy enough I didn't have time to reflect on last year's parties.

Life is good February, take it easy on us this year.

A purse by any other name...

I was going to start this post with "A couple of weeks ago...", but when I went back to find the link I needed, I realized that it was a couple of months ago.

So, a couple of months ago, Misty posted about her handbag. She asked two questions 1) what do you call your handbag? and 2) what do you carry too much of? (except she did not leave her preposition dangling)

This post made me laugh because I've gone through my fair share of handbag seasons.

There was the "I love purses, they make me feel grown up" season from about 1977-1990.

Then there was the "Purses weigh me down, I just need my ID, my keys, a little bit of cash, and a quarter for the pay phone." season that lasted from about 1990 to 1997.

Then there was the "I am on my own and have a good job, I'm going to buy myself an expensive purse just because I can." season that lasted from 1997-1998.

Then there was the "Purse? What's a purse?" season. 1998-2000

Then the "It takes 10 minutes to pack the dang diaper bag before we can even leave the house." season that started in 2000 and seemed to go on for-evah.

Somewhere along the way, probably about the time the girls turned 3, I decided that it was high time that I start carrying stylish purses again. No room for sippy cups or zip loc baggies full of cheerios, just the stuff I needed. Forget the kids.

I did that from 2006 until February 2011.

After getting Brooke's T1 diagnosis, I quickly learned that my days of spur of the moment errands with a cute little trendy purse were over. I mourned my foot loose and fancy free life and started looking for a way to carry around all the stuff we would need "just in case" she went low, high, or needed a snack.

Or just in case we were out longer than expected and we had a full on meal before we made it back home.

Clearly, I needed some retail therapy.

I settled on a Vera Bradley tote bag:

And we affectionately call it "The Vera".

And there is a BUNCH of stuff in there. I actually love it because I have non perishable stuff in there for Brooke (and let's be honest, the other two eat the snacks just as often as Brooke does) and so I don't usually spend 10 minutes getting all her stuff together before we leave. It's in there all ready. I just pick it up and go.

The other day I was volunteering at school and one of the moms said, "I knew who you were because I recognized your bag."

That's good, right?

But because the bag is so big, stuff just gets thrown in there and I never really know what I'm going to find.

Or it's so big I can't find what I'm looking for so I throw another one in...whatever.

I cleaned out The Vera a few days ago, and here it is...

cosmetics
gum

fast acting sugar

wallets (thank you Dave Ramsey and your envelope system)

protein

glasses cases

two teeth Bubba had pulled at the beginning of December

just call me Mema

pharmaceuticals

(and a couple of extra insulin needles that we haven't used since October)

Not pictured is the trash/random papers I cleaned out and the stuff I grab and throw in there just before we leave the house: 1) my cell phone...gotta have it 2) Brooke's meter bag...it's got everything we need to keep her alive until we can get back home 3) my keys. In that order.

So...

What do you call your purse, handbag, Vera?

Can I see inside?

We are diabetes geniuses!

...at least for today.

Brooke had an endo appointment this morning and her A1c went down almost a whole point. It's the lowest we've ever had.

We've been pumping just a bit shy of 3 months, so I feel like it's a pretty good indicator of how we're doing on the pump.

As we were leaving the doctor's office, it was time for Brooke's snack. We did a quick finger prick just to see where she was...353.

Just keepin' me humble :)

Disney? Still? Yep.

I'm not going to make any promises, but this might be my last post about Disney.

Diabetes at Disney was just a'ight for me. It wasn't awful, it was easy to keep in the background most of the time, but it was still there.

I packed all of our supplies in a backpack to carry on the air plane. I knew as long as I had that bag in my posession, no one could steal my argentum nitricum induced calm. We were going to be gone for 7 nights and 8 days. Our pump trainer suggested that we pack 3 times what we thought we would need. Plus Novolog and Lantus pens in case the pump crashed...and needles to use with the pens...and alchohol pads, test strips, lancets, back up meter, glucagon...

All of this "planning for the worst" kinda' cramped my style. I usually like to throw in the bare minimum and then run by Walmart if we run out of toothpaste or deodorant.

The thing is, they don't sell infusion sets at Walmart.

I compromised with taking 3 times what we needed of the stuff we have to get by prescription only, and a bit more than we needed for the over the counter stuff. And enough Juicy Juice to get us through lows until we could go to the store in Orlando.

Yep, all that stuff, accept the gray purse, fit in the backpack. We also had to carry on the liquid Motrin & Tylenol because Brooke had a busted ear drum the day we were flying. I stuck in our pill box to help us remember who'd taken what pill when. And just for good measure I made sure we had our pump instruction manual (since we're still rookies) and batteries and an empty bottle for sharps and our old sliding scale in case we had to go back to injections.

You would think security in our small town would be easy-peasy. But it wasn't. The TSA agent said that I would have to get the pat down unless I wanted to open each and every juice box. Um...doesn't that defeat the purpose of having juice boxes? So I got the pat down. Brooke walked through the metal detector, and then had to touch her pump with both hands, and then they did some sort of swab test on her hands. It took us about 15 minutes to get through the line and we were the only ones there.

Coming home from Orlando, the happiest place in America, the Satuday after Thanksgiving, waiting in line, it took us less time to get through security. Who knew?

Our plan while we were at the parks was to leave an insulated lunch box with backup insulin, 1 set change, back up juice boxes, insulin pens, batteries, the extra meter, lancets, needles, test strips at the First Aid Station. They made sure the lunch box stayed at room temperature and since it had an ice pack in it, room temperature was perfect.

They were so friendly and helpful. We dropped our "just in case" stuff off every morning and a couple of nights remembered to go back and pick it up. The other nights, Uncle Bubba remembered. He can be a grown up when he wants to.

Even though we've been going to Disney for 30 years, we did learn where the first aid stations are at every park. Hmm...you learn something new every day.

We carried the backpack with snacks, juice, and the meter. We never had to go back and use the stuff in first aid, but we had it "just in case". I guess the only down side to not needing the "just in case" stuff is that you forget to pick it up at the end of the day.

Her sugar was high most of the trip. She was on antibiotics the whole time we were there, so we kind of expected that. The times she did go low it was because she needed to eat a meal and the snacks just wouldn't cut it anymore.

As for making pump adjustments...now that we're home and she is done with the antibiotics, we're still doing that. For the week we were in Florida, we knew she was going to run high, so we just cut ourselves some slack and went with it. We ended up bolusing every 2 hours or so during the day because of snacks, and then we usually let her go from about 11pm-7am without checking. It was a great routine for getting some sleep.

Like I said before, my family has been doing Disney for 30 years. We've waited in 2 hour lines for most rides before anyone had thought of fast passes, mist machines, ceiling fans, TVs, cell phones, facebook, or interactive games to help pass the time. We had some good quality family time passing the hours while we wound up, down, and all around to finally board Pirates of the Caribbean. We learned the value of a well planned trip to the air conditioned, theater seated Hall of Presidents or Country Bear Jamborie when we'd had just about enough of the heat and humidity.

When I went to Guest Services to ask about where to leave our "just in case" stuff, I also asked about a Guest Assistance Card. It was a little read index-type card that alerted the cast members that we might need medical attention while in the park. It also allowed us to wait in the disabled lines or Fast Pass lines at most of the rides. We usually didn't get immediate access to the rides in the disabled lines, but we never waited more than 20 minutes to board a ride.

Given our history with Disney, the adults were a little hesitant to use the card. My children, however, were all over it. For most rides, there was never more than a 30 minute wait even in the real line. We usually just waited in the normal line for those.

Most of the times we used the card we ended up in the Fast Pass line because we weren't using a wheel chair. The card only guaranteed 6 people a pass, so two of us chose to sit out while the other 6 went in. The card did save us a couple of times when Brooke needed attention and we were able to take care of her and not waste the time we'd already spent in line.

I guess the Guest Assistance Card left us with mixed emotions. I'm sad that my kids aren't patient enough to wait 30 minutes for a ride without complaining, very loudly, "why can't we just use the golden ticket?"

I've been that person in the regular line that has waited 90 minutes in the heat and humidity only to see an apparently healthy family walk right up flash the card and board in front of me with no wait at all.

But, it was helpful. We didn't have to worry about wait times vs. snack times vs. meal times vs. has she been too active, did we over correct her? vs. will she crash before we get done with this ride? It made Disney with Diabetes much easier.

It made me less judgemental of the people in the disabled line. And the next time we go back, I'm going to teach my kids that there are some things worth waiting patiently in line for.

Don't mind me, I 'm just skating...

I totally get that you have to crawl before you can walk, and you walk for a while before you jog, and you jog for a long time before you actually run.

I've done C25K before...I know how all of that works.

But this?

This isn't even running. It's way different than running. It's nothing like running...or walking for that matter. It's more like skating. You still use your legs to get from point A to point B, but that's where the similarities end.

Really.

Yesterday afternoon we threw everything we knew about managing Diabetes out the window and started completely over.

Well, accept for the carb counting...you still have to count carbs. But you look at carbs a bit differently...so...even that changed.

It's all good. And it's going to be wonderful once this overwhelmed, hyperventilating, overthinking alter ego of mine goes away.

I'm so glad I have Honey...so thankful I have someone to be overwhelmed with...someone to hold the paper bag to my face...

My favorite part so far? way less math

Which is good because overwhelmed and hyperventilating isn't the best frame of mind for math. The hyperventilating doesn't do much for remembering either. After I checked Bubba out of school early to head to pump training, I totally forgot about the other two boys that I pick up. I also totally forgot to tell their moms that I couldn't pick up that day...

Brooke's favorite part so far? no more shots! She hasn't had a shot since lunch yesterday.

I just realized that her Halloween shirt says "Witch way to the candy?" Ha! It's more than a little ironic that she chose that shirt to wear to her pump class. Halloween will be much easier to navigate now.

Here she is eating her first shot-free meal. Later on, closer to bed, we went for frozen yogurt and she had 20 grams of carbs instead of 15 grams...just because she can now...

Bubba's favorite part? getting frozen yogurt before bed

Mary TuTu's favorite part? locking and unlocking the pump buttons

We chose the Medtronic Revel mainly because that's the one Brooke wanted. To be honest, I really wanted the Omnipod.

I have three children. If Bubba and Mary TuTu are Type A personalities, Brooke is very much Type B. She is the creative, artsy, go with the flow, no focus at all kid. She frequently forgets her lunch box, jacket, snacks, backpack, or all of the above. Sometimes she remembers to grab her things at home and then walks into school without them and LEAVES THEM IN THE SUBURBAN.

When she realized that there was a remote that controlled the Omnipod, and that you had to keep up with the remote at ALL times, she wanted NO part of the Omnipod. Because, GIANT RESPONSIBILITY!

She was very wise to realize that she needed something that was ATTACHED TO HER AT ALL TIMES, so that she could NEVER LOSE it. It's the reason all of her major body parts and organs are attached...she would forget them in her cubby if they weren't.

Since we made the decision about 3 weeks ago, I've lost count of the number of times she's lost/forgotten waterbottles, snack bowls, Bible class papers...and every time I say to myself, "I'm so glad we went with the Medtronic."

So far, so good. I'm working on letting go of what we did before and embracing this new way of thinking. Honestly, I think things will eventually be more like they were before diagnosis once we get the hang of it. We'll see. Obviously we're still learning.

My goals for today? eating lunch with the girls/overseeing the new lunch routine and remembering to pick up at the middle school

Control Issues

I'm basically a control freak. There, I typed it out loud.

When Bubba was a baby I had a system. Everything "baby" had a place. When it was time to change diapers, we went to the changing table and the diapers, wipes, and ointment were exactly where I left them. Sippy cups were matched with their lids and stoppers right out of the dishwasher and had their own cabinet.

When the twins came along, I loosened up a little. But organization was the key to my sanity. Each baby had a color of bottle she used so we could keep track of which baby was eating what amount. Each baby had their own color of pacifier. Sippy cups were organized in a similar way. Everything had it's place, but I had a three year old Bubba that could "go get mommy a diaper and a wipe" whenever I asked, so I could stay parked on the living room floor folding laundry.

We were in youth ministry then, and we packed up all of our baby supplies and went somewhere pretty often. I remember how hard it was to do even the simple things like change diapers or fix bottles when we were on the road. And don't even get me started on the pack-n-plays. I'm pretty sure I earned an engineering degree learning how to work those.

It was because everything was out of place. It wasn't all gathered and ready to go. We were living out of duffel bags and sleeping bags and...pack-n-plays.

All of those memories came rushing back to me last week when we took Brooke and her T1D to camp. While we were at camp, we lived next door to a couple with a three year old and an 8 month old. That momma made it through the week like a champ, but I remembered.

I was so glad to get home and back to our little system. It works for us. And our meter is only steps away from where we eat dinner, not a brisk hike back up the mountain.

I felt in control again.

Accept, if I'm being honest, control and T1D don't really belong in the same sentence. I'm working on realizing that.

We have a drawer at the end of our kitchen counter that serves as our supply storage. It took about a month of the supplies sitting on the counter above the drawer for me to realize they weren't going away and I had to figure out where to put them.

The left side of this picture is the back of the drawer, and the right side is the front.

From left to right:

*the black cases are extra meters, one is her school meter on summer break

*in a divided rubbermaid dish we keep batteries, white out tape (because I'm anal about our log book), meter strips, alcohol pads, pen needles, and the solution to test our strips

*the large white bottle is our 90 day supply of thyroid pills

*the round rubbermaid bowl holds lancets

*the meter we use most of the time, under that our log book

*an ink pen, a sharpie (to write carb counts on snack bags)

*the insulin pens

*the pill box with her current weeks' pills

I keep the rest of our 90 days of supplies in the pantry and refill the drawer from there as needed. We keep the Ketostix in the bathroom. There is a basket in the pantry with Brooke friendly, pre-measured snacks.

Organizing, and scheduling, and setting alarms are my way of feeling in control.

But even after almost 6 months, sometimes we forget to check Brooke's sugar before we eat.

I have an alarm set on my phone so we don't forget to give Brooke her pill. (Honestly, you have to be some sort of monster to steal a phone from a busy mom. I've had my smart phone for 3 months, and pretty much our whole lives are on that phone. The whole family would be lost.)

Sometimes I forget to pack the pen needles when we're eating out. So we have to go back home and get a shot instead of moving on with our day like we'd planned.

One time we left the house to go out to eat in a rush and I left everything D-related at the house. For 10 minutes life was like it was before T1D. Then we sat down to eat and I realized we didn't bring a meter. Thank goodness I keep one in the glove box.

Sometimes we're running late because I remember at the last minute to pack a bag with the things Brooke may or may not need while we're gone.

Occasionally, we forget an injection. Once I sent Brooke to school without her breakfast shot. I called our CDE and we fixed it, but still, that wasn't a fun phone call to make.

I'm working really hard on letting go. I'm trying to remember to "keep calm and carry on". It's a journey, right?

Pancreas on the run.

One of the only jobs I've never had at camp is nurse, mainly because I'm not the nurse type. This week, Honey and I added pancreas to our camp job resume.

I called our CDE last week and she gave me some tips.

1) Less Lantus, our long acting insulin. Before we left for camp Brooke had been running high but Dreama wouldn't let us increase her insulin. In fact she told us to decrease her Lantus the first night we were there and advised to decrease it again if she started going low. Before we left she was taking 4 units per day, at camp she was down to 2 per day for most of the week.

2) More snacks. Dreama told us to make sure her afternoon snack was a hefty one. We doubled her carbs from 5g to 10g and made sure she had plenty of protein and fat with it. We also made sure she got plenty of protein and fat with her bedtime snack and meals.

Brooke still had a few lows, but over all, her week was good. Thank goodness, we didn't have to use the glucagon. I'm glad we got some experience dealing with T1D on the go this week. It's going to help a ton as we plan for our vacation in November.

I was definitely ready to get home and back to our normal routine of testing, injections, organization, and storage.

We only had one sharps incident while we were gone. We kept all of our sharps in an old water bottle (reuse, reduce, recycle anyone?)

Since we aren't using syringes anymore, the waste takes up much less space. These are all of our sharps for the whole entire week. That's not too bad. One lone lancet made it's way to Honey's bed and we didn't find it until he sat on it. (oops!)

I forgot to pack an extra meter and batteries, but our meter didn't let us down. It worked perfectly all week.

The workhorse for the week was our teacup meter bag I bought from Too Sweet Boutique. Amy, the owner, is taking some time off from her boutique, but you need to check out her precious T1D supply bags when she's back in business.


I LOVE THIS BAG. It is the perfect size for everything we need to treat a low or to treat Brooke at meal time. I usually carry 2 juice boxes, a few rolls of smarties, a tube of cake icing, a couple of dollar bills left over from baseball/softball season for emergency sugar, an opened package of peanut butter crackers, and a card with my cell number and instructions on how to help Brooke treat her low.

While we were at camp, away from our normal organization system, it was easy to throw in an insulin pen and her thyroid pills at meal time, and head to the dinning hall.

Brooke took her bag to Bible class, and I carried it most everywhere else. It was handy to have the meter and juice right there and avoid a fast hike up the mountain to our cabin when she went low. Because it's such a unique bag, everyone knew it was Brooke's and that it had important stuff in it, so everyone was able to help us keep up with it.

The hardest part about keeping up with all the D stuff was going back and forth for each meal to get the insulin from the fridge in our cabin. Even though we were in the mountiains and it was much cooler, the only way to guarantee the insulin stayed the right temperature was to keep it in the fridge.

When we make our trip in November, I'm definitely going to have to figure out how we want to carry the insulin all day and still keep it in its happy place.

That's what it's all about right? Keeping the insulin in its happy place.

I'm really not that hard to please.

Saturday night we dropped the girls off at Mom and Dad's so they could spend the night and not be up as early as we were on Sunday when we took Bubba to camp. As we were leaving, Bubba asked if we could go get ice cream.

It used to be one of our favorite things to do on a summer evening. But this summer we've avoided it, because of T1D. There just isn't a good way to do that right now.

If she eats it before bed, she can have 15g (of carbs), but really, how much ice cream do you get for 15g? We usually end up buying some at the store, measuring it at home, and having it that way. Which is fine...unless what you really want is to go out and get a Blizzard, because 15g is not much when it's a Blizzard.

Anyway...Brooke wasn't with us, so after a pinkie swear to never tell the girls we went there without them, we stopped in to our favorite self serve frozen yogurt shop. Do y'all have these? We've just had a few in our town pop up in the last year or so. You serve yourself frozen yogurt and add toppings, then weigh what you have and pay by the ounce.

We'd been in once since T1D and it was hard. We had to ask for nutritional information, which they had for the yogurt but not the toppings. Have you ever tried to tell Brooke that she can have the yogurt but not the toppings? Or, why don't you get the fresh strawberries instead of the brownie chunks for your topping?

And I hate that look you get when you ask for nutritional information at places like this. It's the look that says, "If you're on a diet, why are you here?"

The first answer we got when we asked was something like, "Our products are low fat." Yeah...not really what I was looking for...

And when we finally did get some nutritional information, it was only for the vanilla or chocolate flavors...and the serving sizes were measured in grams, but the scale at the shop only measured in ounces.

But! When we walked in Saturday night, this is what we saw:

The nutritional information for every flavor they offered that day posted right above the yogurt machine! Complete with the serving size! And the serving size was given in the same units that the scale at the shop used! It was a T1D miracle.

Theoretically, we could measure and weigh Brooke's chosen yogurt, be better prepared with the carb counts and serving sizes of the toppings, or bring a topping from home, like mashed up Oreos, or chocolate chips, or any sort of breakfast cereal, and know exactly what she's eating. Yay!

And the sugar free flavor was only 16g per serving. That means it's actually possible to get a smaller serving, add a bit of a topping, and have a bedtime snack all ready to go. Yay!

Before T1D I never knew how happy easy access to nutritional information would make me. This little outing kinda' made my summer. Happy 4th of July, Brooke!

A girl and her peanut butter.

So...it's July...

One of the things on my May to-do list was to figure out a way to purchase some peanut butter. But only the special kind of peanut butter that Brooke loves. The kind that comes in individual .75oz. servings.

Because if it's in .75oz. servings, I know there will be at least one time a day that I don't have to say no.

Living in these days of peanut allergy awareness has made it very hard to find the special peanut butter.

During Brooke's T1 diagnosis hospital stay, the nurses brought her the special peanut butters for snacks. She fell in love and we added another free food to our favs list.

Free Food Favs List:

*breakfast sausage (the turkey variety because we don't want to add cholesterol to her issues)

*bacon

*pickles

*pickle pops

*cheese sticks

*peanut butter

*sugar free popsicles

One of the baseball moms that we've known all of our little league lives works for a food distributor in town and she hooked us up...bulk style...as in 200 little individual servings of peanut butter. We just picked it up today.

Brooke is in heaven! And so am I. My days of measuring and weighing .75oz of peanut butter are over! Thanks for helping us, A!

Some red tape

Getting Brooke's diabetic supplies set up on our insurance mail order routine was on my May to-do list.

I am so thankful for our medical insurance. I'm not sure how we would afford everything that Brooke needs if we didn't have it. Our prescription insurance requires us to order all long term medicine and supplies through their mail order service.

Actually, they allow us to fill our prescription at the local pharmacy 3 times, and then we are forced to order through the mail or pay full price. June marked the first time we needed to fill one of Brooke's insulins the 4th time. So, basically, my choices were to figure out how the whole mail order thing works or pay full price for the insulin.

I couldn't put it off any longer. I was up against a wall, which is pretty much how things get done around here...not until they absolutely have to.

A full week before we needed the insulin, I got online to order it. Because even Apple doesn't take a week to ship their inventory. Oh, they say it will take 7 days, but it never does. And how much busier is Apple than a little old prescription mail order service?

It turns out, it wasn't as easy as I thought it was going to be to order medication that only a doctor can prescribe on the internet, arrange a payment method, have it packed in temperature appropriate packaging, and delivered by the US Postal Service.

And it was certainly going to take longer than a week to see it sitting on our doorstep.

And it's actually cheaper to order a 90 day supply instead of 30.

And there was no way I was going to convince them that I didn't really need every prescription the nurse faxed in, I just wanted a couple of them and have the rest on file for later. I am really fine on the alcohol pads and Ketostix (or whatever they are called).

The nice lady was having none of that. If the nurse faxed it in we must need it, so she's going to send it.

I finally gave up and prepared Honey for a crazy-large bill. No, we don't need everything, but they can't not send it. No, it won't cost this much every month. We'll just have a stash of supplies that will last FOR-EV-VER.

About five days into the process, I thought everything was done and we would see supplies just any minute now, there was a message on our answering machine. It was from a nice girl in the billing department saying that the total of our bill was larger than they could ship without approval and could I please call so they can get our stuff shipped.

I called back and she very gingerly told me what our bill was and that even though I had pre-authorized them to bill our credit card, this amount was too large to fall under the pre-authorized category. She asked if I was expecting such a large bill.

To be honest, I didn't know what all the nurse ordered, but I was pleasantly surprised. I knew what the bill was for a 30 day supply the first time I went to the pharmacy after Brooke was diagnosed, so what she was telling me seemed reasonable for 3 months.

It won't cost that much every 3 months. We will be able to only order what we need from here on out. I think. But I appreciate the nice girl calling and checking first.

And then 13 days after that phone call we got this:


900 alcohol pads
500 lancets
500 test strips
2 glucagons
15 vials of Novolog
10 Lantus pens (which was the original need, thank goodness for samples from the doctor)
540 insulin pen needles (the new, really small ones...Brooke is stoked!)
2 bottles of Ketostix (if that's not how it's spelled, it should be)

It feels like we'll never use all those alcohol pads. I'm thinking the insulin will last about 9 months. Pray we never need the glucagons. At 4 shots a day, the needles should last a little over 4 months.

Now, I've got to figure out where to put it all.

And mark on my calendar the day I need to start the re-order process. I thought I was pretty adept at online shopping, but this is definitely more involved than ordering a cover for the iPhone from Apple.

Keepin' it real, yo.

I've been reading blogs written by other moms of T1 kids. I have to do it in small doses though. I think that sometimes blogging can become an outlet for the depressing and negative.

I don't do negative.

Not that negative isn't there, but for me, generally speaking, it doesn't do me any good to rant and rave about how much I hate Diabetes. Or about how inconvenient it is. Or how unfair it is.

Because at the end of the rant, Diabetes is still there.

Still there...

Even after throwing a great big wall-eyed fit. (Yep, I've even tried that.)

But...a few weeks ago I came across a T1 mom blog post that shared a thought that I love.

LOVE.

Make friends with Diabetes. It is better to take a journey with
a friend than to carry the weight of an enemy.

Love, right?

It sounds so wise. It's my goal. This is the journey we've been given, we have to take it, it's not a choice. So why not choose to take it with a friend?

The upside to being awake at 6:30am on a Saturday

There are advantages to arriving at the ball fields at 7:30 in the morning.

1. The parking lot was empty. I had no trouble at all parking the suburban.


2. As a general rule, the wind/dirt doesn't blow early in the day. This morning it was beautiful!


3. If we have to play a double header, before the 90 degree heat is preferred.


4. ...

Three is all I could think of.

The second game was the longest. game. ever. It ran about an hour over time. I'm totally not exaggerating. We waited too long to feed Brooke lunch, and that started a roller coaster of a day with her blood sugar.

Or the roller coaster day could be due to the antibiotics she is currently taking.

Or the infection she's fighting.

Or the excitement she's feeling that her grandparents are visiting for the weekend.

Or the stress she felt when I would't buy her a second bag of sunflower seeds at the game.

Who knows?

All I know for sure is that tomorrow is Sunday, and that means Mexican food for lunch and naps shortly after.

Happy Sunday!

It doesn't go away

Diabetes isn't like strep.

It doesn't go away after 10 days of antibiotics.

It's not even like Weight Watchers.

You can't quit caring about what you eat for the weekend and start back on Monday.

I've spent the last month thinking, we'll get through this and things will get back to normal.

Denial? Probably.

All I know is, my brain is tired of thinking about it. I feel like if I have to look at one more nutrition label I'll scream. I never have been good at math, and now I have to add, subtract, multiply, and divide ALL THE LIVE LONG DAY.

I told my 4th graders, after a particularly stressful lunch, to pay attention in math class because some day your kid might end up with Diabetes. I almost made our lunch crisis into a word problem. I still might.

Brooke ate 22g of carbs at lunch. She was given 3 units of insulin. If her dosage requires 1/2 unit insulin for every 20g of carbs, how much more insulin did she receive than she should have? How many grams of carbs do you have to give her to balance out her lunch shot so she will avoid going extremely low 1 hour after lunch? **Cross curriculum - Health connection: Which foods and how much of each food would you feed her to compensate for the insulin overdosage? Remember, you need a combination of fast acting and slower digesting carbohydrates.**

I'm even tired of carrying the Vera. I want to go back to the no diaper bag days.

And right now, I can't stomach the American Diabetes Association website. All it does is use words like "chronic illness" and "disease" and "medical supplies" and "diabetes team". And to be honest, I don't want any part of any of that.

And if I think about the fact that it's not even me that's actually living with this, it's my precious Brooke...well, that just puts me over the edge. Because I know how I'm feeling about it, and I can't even begin to imagine how she's feeling about it...aside from all the Girl Scout cookies she gets to eat when we overdose her.

It's like having twins all over again

We're trying to settle in to some sort of a routine. Yesterday was a school holiday. Mary Tutu woke up with an ear ache. I couldn't decide if she really had an ear infection or if she just wanted to visit the doctor because that is so in right now.

We finally settled on letting the school nurse check it out and give her opinion.

Since it was a school holiday, we took advantage of the quiet time and visited with our school nurse about Brooke's new schedule. We love our nurse...she knows her stuff, and I know she'll take great care of Brooke.

She confirmed that Mary Tutu should probably see the doctor.

Bubba, who has handled this so well, was not thrilled with spending his day off visiting with more nurses and doctors. So, he and Gran spent some quality time together.

I'm a little ashamed to admit that it took until Monday morning and a phone call from my dad for me to remember that I have 2 other children that need my love and attention. They had been operating on survival mode for the better part of 4 days, and it was catching up with all of us.

And, I've almost forgotten twice to give Mary Tutu her medicine for her ear infection.

And yesterday, I set the microwave to cook for 5 minutes and started it without putting the food in.

Since coming home from the hospital, Brooke's prized possession has been her bead collection and her journal. Yesterday morning Mary Tutu was beading with Brooke and did something wrong. I'm still not completely clear on exactly what happened, but push came to shove and the entire bead box got dumped.

Yes...I think there is some stress going on there.

We're working on it.

I feel like we've just introduced a new born to our family. This diabetes thing needs quite a bit of attention right now. You've got to feed it every 2 hours. You've got to check on it during the night. You've got to stop what you're doing 4 times a day and give it what it needs. If you're leaving the house, you've got to pack a bag.

This must be what it felt like the first few weeks after the twins were born. To be honest, I don't really remember, there is kind of a black hole in my memory during that time. All I really know is that we had it under control, but caring for the babies consumed every minute. And we were so thankful to have family close.

Today, I dropped my newborn off at school and am trusting my people there to take care of her. I know she'll be fine, but it still wasn't the easiest thing I've ever done.

Soon we'll figure out all the little tricks and it will become second nature. Soon Brooke won't remember life before diabetes. But right now, we're adjusting.

Did you know?

Before Thursday, my knowledge of diabetes consisted of what Dr. H talked about on Biggest Loser.


That's not true. I knew enough about the symptoms of diabetes that we were able to get Brooke diagnosed relatively early. She was sick, but not as sick as she could have been. I'm not sure where I learned about warning signs, but somewhere along the way, I did. And they stuck.


Did you know...

-that your pancreas, for the most part, makes the insulin your body uses...didn't you always wonder what the pancreas did?

-Type 1 Diabetes is an auto immune disease

-a person that has Type 1 Diabetes will always be insulin dependant

-that milk has enough carbs in it that diabetics have to count it as a carb

- that it is possible to detect the antibodies that cause Type 1 as early as 10 years before a diagnosis

-even though Mary Tutu is Brooke's identical twin, she only has a 40%-50% chance of becoming Type 1...that seems high to me, but not when you compare it to 100% you would think it would be with identical twins

- that researchers are in the process of developing an artificial pancreas...wouldn't it be awesome if someday Brooke could get a substitute pancreas that functions similar to a healthy one?

-that back in the 90's one of the winners of Miss America (or USA, whichever one has the swimsuit competition) was a Type 1 and participated in the swim suit competition wearing an insulin pump

- that until 1993 it was generally accepted that insulin was attacking the patient's eyes, circulation, kidneys, and causing other well known complications...now we know that lack of insulin makes it impossible for a diabetic's body actually use the sugar they are eating and it's the lack of insulin that causes all the problems

- to keep Brooke healthy we have to test Brooke's blood sugar 4 to 6 times a day

-there are people in government that want to tell insurance companies that they only have to cover blood sugar testing 3 times a day instead of leaving it up to doctors to determine what is best

- the scariest part of living with diabetes isn't blood sugar getting too high...it's letting it drop too low

Things I would "like" if we were on facebook.

We came home from the hospital this afternoon.

We LOVE our endocrinologist. My dad wishes he was a kid so he could see him instead of the one he uses.

The nurse in charge of us today was supportive and helpful, and she built up our confidence.

Brooke fell in love with making beaded jewelry in the playroom at the hospital. She even convinced Uncle Bubba to bead with her while Honey and I had sugar school with the nurses and dietitians.

As I type, I'm listening to the girls sing Taylor Swift in the shower.

Brooke seems pretty much back to normal. We still have some work to do on her sugar, but she's so much improved.

Brooke loved coming home. It took her zero minutes to spread out all of her hospital treasures in the middle of the living room floor and demand someone help her finish the necklace she'd started at the hospital. I'm not sure how much more normal I can stand.

I'm kidding. I'm really glad she's feeling so good.

It's good to be home.