Sleep Tight

Lately, I have been thinking a lot about sleep.  Sheep, fences, puffy clouds, I want the whole package.

We started Madeline on her Medtronic Revel insulin pump one month ago.  Besides a bent cannula on day one (note: Madeline's tummy is made out of steel) our newbie pump status has been pretty easy.  I can see the benefits everyday.

  

I have surprised myself with how quickly I have come to rely on an insulin pump.  I love Medtronic's Bolus Wizard.  No let me rephrase that.......I LOVE MEDTRONIC'S BOLUS WIZARD!  After 2 years of number crunching, calculators and a lot of WTF, I get almost giddy when the little Wizard gives me numbers.  Madeline is getting insulin continually, blood sugars have become more consistant, and we have much more flexability with mealtimes.  Things are gradually falling into a comfortable routine.

Except for sleep.  Oh sweet, sweet sleep.

I have worn a path between my bedroom and Madeline's bedroom.  I have always tested Madeline during the night, just not as often as I have since her pump start.  I am a touch out of my comfort zone.  I have control of the pump, but diabetes has control of Madeline.  I tell the pump what I want it to do, but that doesn't mean diabetes isn't going to throw me a curve ball.  I set alarms throughout the night to be sure all is well.  I only have one Madeline, so if my sleep must pay the price, so be it.  Eventually I will find a good balance.

But geez, I really miss my sleep now.

So if you see me out and about and I look like I haven't slept in days, that's because I haven't slept in days.  Please do not tell me "take a nap, you'll feel better".  If I could take a nap, I would not be running into you so that you could tell me to take a nap.  A nice smile, an understanding  nod of the head to my incoherent babble, and let me be on my way.

Just make sure I'm going in the right direction once I'm on my way.











 


       

Pearly Whites

Yesterday was a very big day for Madeline...she had her first dental cleaning!  All this time she has had to sit and watch from the sidelines as her sister got to sit in the special chair and have fun things done in her mouth (at least that is what we have been telling her).

As I sat filling out the paperwork for Madeline, I realized I have never had to write out her medical history before.  I have filled out paperwork many times for the doctors office, but they know the deal with her Type 1, and just need to know if there have been any changes.  This was different.  I actually had to list her insulin medications, hospital visits, and the biggie, diabetes.
 
As we waited in the waiting room, I could see the receptionist talking quietly with the dentist and pointing out her medical history.  Yeah, a 4 year old with diabetes,  that will for sure create a little "what the whaaaat?".

As Madeline climbed on the fun chair that moves up and down, the dentist looked at me and said: "so, I see Madeline has diabetes?  Type 1?".  Wow, at that point I realized I had just wrote "diabetes", not "Type 1 diabetes", on her paperwork.  Why, I have no idea.  So I am incredibly happy that he knew what type of diabetic she was, I nod my head wildly and blurt a surprised "yes!".  To which his reply was "so you control her diabetes with food and exercise?".  My happy face fell off my face in a nano-second when I had to say "no, she is insulin dependent".  He then realized that her listed medications of Humalog and Lantus must be insulin's.  I'm betting there was a little internet surfing going on after we left the office.

It is very frustrating when people are confused about diabetes.  Meri at Our Diabetic Life explains this perfectly. 

I still love our dentist.  He made Madeline's first cleaning so fun and exciting, we were all laughing.  I don't know what was funnier, Madeline keeping her mouth wide open the entire time she sat in the chair (impressive), or the dentist cracking up at Madeline discovering new uses for the suction tube for spit.  I must say, the girl is creative.

It was so nice to have an appointment that didn't require blood sugar numbers, finger pricks or a million questions.  Our only instructions were "keep up the good work with brushing and flossing!".   How refreshing.

Madeline will be back in 6 months for another cleaning.  Next time she will be wearing her new Medtronic Revel insulin pump (more on that next post).  I'm sure that will create a few new diabetic questions, that Madeline, will be more than happy to explain.

That is if she closes her mouth long enough. 

      



         

 

Our Gang

Kids, in general, have a natural curiosity about Madeline's diabetes.  When Madeline was first diagnosed, it was agreed that we would not hide her blood sugar tests and insulin shots.  From anyone.  We wanted the kids, especially, to watch and see what was going on.  At first it was a pretty big deal.  Most kids are not a fan of shots, and just the sight of Madeline's insulin needle created many "oooooohs!" and "aaaaaahhhs!".  She was the new toy.  But just like anything, as time went on, it was just part of the normal routine.  Madeline was no longer the new and shiny object in the room.

 As all the kids grow older, so does their knowledge of the diabetes world we live in.  It seems everyday one of them will say something that makes me smile, or have me laughing in hysterics inside.

Sophia's way of reassuring me I'll always have a helper : "When Madeline and I grow up we are going to live together.  Don't worry mom, you can teach me to take care of Madeline and her diabetes.  I don't think I'll be scared of blood by then.".  Sweetie, if you have to take care of Madeline by the time the two of you can live together, diabetes won't be our biggest issue.  

Madeline's idea of cutting our babysitting costs down:  "I know you  think you can't leave me home alone right now because of my diabetes.  I can start testing myself and give myself a shot if you want.  For real life.".  Honey, that is so sweet, but Ellie the stuffed elephant will not be able to help you be alone.  And no, 15 + 15 = 30 is not the correct insulin dosage.

Aaron informing anyone within a mile radius of Madeline:  "She cannot eat that.  She has diabetes and that is not good for her!  Her mom will get really mad!".  Buddy, that is so sweet you look out for her.  I will never have to worry as long as you are by her side.  And I appreciate you sneak all your snacks to your bedroom and eat them alone in the dark.

Reagan explaining her future profession:  " I want to watch every time you test Madeline or give her a shot.  I want to be a nurse who helps with diabetes and I will need to know how to do all of this.".  Wow, only 6 and you already know your medical specialty.  You may need to control  that little giggle you do every time you watch tests and shots.  We laugh like crazy, but it might make one of your patients a little nervous.

Ruby lending a helping hand:  "I can give Madeline her diabetes shot tonight.  I have my Doc McStuffins  doctor bag and am really good at giving shots now.".  What a  little sweetheart.  Even Madeline said you give better shots with your gigantic pretend needle over my real, little one.  Well done.

I am happy Madeline has family and friends that understand she is no different than anyone else.  She is one of the gang, and is treated no different.  There may be times when she needs to step away to deal with diabetes, but all her little buddies wait patiently for her return.

And for the days when one of us forgets she is dealing with a chronic illness and may need to shed a few tears:

"You would cry too if I stuck a big needle in your butt!" 

True that Madeline.

    

Reality Check

We have had a pretty good winter as far as germs go in our house.  I have been insane pro-active with hand sanitizer, and hand washing is done constantly.  Really.  But no matter how hard you work at it, those germs still find a way in.

Sophia was the first. 

She had a big play date planned at our house.  A whole week of anticipation, then BAM!, her little school friend gets a stomach bug and can't make it.  Surprise, surprise, the very next day, BAM!, Sophia gets that wonderful stomach bug.  Really?  We quarantined her in the front room and told Madeline she was not allowed near her sister until we knew she was over her illness.  To our amazement, both girls followed our rule, and within a couple of days, Sophia was back on her feet, and Madeline had avoided "the bug".  Happy dance!

Two weeks later, while dozing on the couch in her dads arms, our little friend the stomach bug attacked Madeline.  Out of no where, it was a scene from the Exorcist, and my new off white carpet would take the lethal hit.  Rick did too, but geeeeez, my new carpet!  Really?  Then it dawned on me that just moments before the chaos erupted, I had given Madeline a juice box because her blood sugar was low.  Not good.

Madeline had only had dinner a couple of hours earlier, so she still had quite a bit of insulin working.  Now she had no food for the insulin to work with, there was no way she could keep anything down, and her blood sugar was slowly creeping lower and lower.  It was only 8:30pm.  Remain calm.  Don't panic.  Read the Diabetes Sick Day Management plan.  I tried this.  For 4 straight hours.  Blood sugars remained in the 50's and Madeline, God bless her, tried to drink regular 7-Up to help her numbers, but the bug would not have it.  It was time to panic.

After talking with the Endo Dr. on call at 12:30am, it was decided Madeline should go to Children's Hospital.  She had gone 6 hours since her last insulin injection, and her chances of going into DKA were growing.  Don't have to tell me twice, everyone in the car.

So this is the thing about diabetes.  I do not like it's sense of humor.  Once settled into the ER room, and feeling so much relief that we had trained professionals all around us, Madeline's blood sugar tested at 163.  Really?  I have been in total "freak-out-there-is-a-monster-under-my-bed" mode for hours, and now it pops back up?  I'm sure diabetes had a good belly laugh at our WTF moment.  We have decided if this should ever happen again, we will drive around the block, test blood sugar, then make our decision.  I'm being serious, really, I have it written on my Diabetes Sick Day Management plan.

Madeline is doing very well.  Rick has finally got the image of a spinning head spewing split-pea soup out of his mind.  Sophia is happy to be able to play with her little sister again.  And me?  Every time I walk into the family room and see that one "just not as new and off white as the rest of the carpet" spot, I say:

 "REALLY?"             

       

Pay It Forward

We were sitting in a restaurant, just having ordered our food, and I pull out the blood sugar test kit and insulin.  There was a very large group at the table next to us, and at the very head of it, a woman who continually kept watch over ours.  I'm used to people taking a double take when I pull out a syringe.  It's nothing new.  If this wasn't my life, I know I would be doing the same.

As the large group began to stand up, say their goodbyes, and get ready to leave, the woman at the head of the table walked directly up to ours.  She smiled and said "I noticed you checking your daughters blood sugar.  My son has been a type 1 diabetic since he was a small child.  He's now a teenager, but we can remember everything just like it was yesterday".  Our conversation flowed easily.  She shared her experiences as a mother of a diabetic child, and I eagerly listened.  We were two complete strangers, but our diabetic world made us old friends.  We may never cross paths again, but I will always remember her kindness.  It made me wonder if I would be able to do the same if I was the woman at the head of the table.

Pay it forward.

After Sophia's dance class, I open the door to guide Sophia and Madeline out into the parking lot, and my eye catches a very familiar scene.  A very little ballerina, sitting on a chair, while mom  is testing her blood sugar.  I stopped in my tracks and steered the girls back into the dance studio.  I needed to talk to someone.

"I noticed you checking your daughters blood sugar.  Madeline has been type 1 since she was 2.". 

Had I not taken the time to stop, I would have never known that this little two year old girl had just been diagnosed with type 1 diabetes 2 months ago.  I would not have known that this new D-mom has many questions she would like to ask me.  Had I not stopped, Madeline would not have met another little girl that lives with diabetes.  Unlike the woman at the head of the table, I will see this mom again, every week, at dance class. 

We may be two complete strangers, but our diabetic world will make us old friends.

      

 

Fingerprints

When we bought our house 5 1/2 years ago, I loved all the wall paint colors the previous owners had done throughout the house.  Except for one little exception.  The blue room.  The smallest bedroom in the house was painted a deep, dark blue, with light blue splotches sponged in.  I'm guessing it was to give it "texture".  It sure did.  It just screamed out at you every time you walked into the room.  And the light green blinds?  Snap, snap snap!  Someone was really working their Feng Shui when they created that masterpiece.

At the time of our home purchase, Sophia had just turned 1, and we were a busy little family of 3.  The ugly blue room was just used as a  spare bedroom, so I was able to decorate around the blue abyss.  I always said "when I get a little extra time, I'll paint this room".  That little extra time never came, Madeline did.

The blue abyss became Madeline's room, and everyday I hated seeing that loud paint.  As Madeline transitioned to a big girl bedroom, I refused to buy anything to match the ugly walls.  I bought purples, pinks, greens and yellows, but not one ounce of blue.  The colors clashed so much you needed sunglasses just to enter the room.  Night time blood sugar tests required an extra bright light just so you could navigate the oh-so dark room.  By this past Christmas I had had enough.  I took Madeline to Home Depot and let her pick out her new room color.  With great relief, she picked a very soft yellow. We both agreed it was a very happy and cheerful color.  It was Madeline.

As soon as I returned home, I ran up to her room and shook the new paint can at the walls yelling "you are so outta here!".  What seemed like a very simple task, turned into the biggest pain in my backside.  The ugly blue walls did not want to die.  Even with a heavy duty primer and two coats of paint, the blue kept peeking it's obnoxious head out of little corners.  After the final coat of paint was on, I put my hands on my hips and congratulated myself on a job well done.  That is until I noticed one small spot I seemed to have missed.

A fingerprint.

Madeline could apparently  not control herself, and had to touch the forbidden paint.  All I could do was laugh, wash Madeline's little yellow finger, and take a picture.  I debated whether or not to leave her little mark on the wall permanently.  As I tossed the idea around in my head, I thought about the  yellow walls representing out with the old, and in with the new.  

I want Madeline to have a fresh start.  She now has her special yellow room to keep all her beloved stuffed animals, secret treasures and the best hide-and-seek spot in the house. 

One small soft light to check those important night time blood sugars is all that is needed. 

The little blue fingerprint on the wall is gone, but Madeline's little fingerprint will forever be painted in my heart.

 

       

Denied

So as diabetes goes, I feel pretty confident I have a handle on it's quirky ways.  So confident in fact, Rick and I decided we were ready to start the insulin pump process for Madeline.  This is not an easy transition, but Madeline's diabetes team gave us the encouragement to start the process.  Learning to use the insulin pump is not for someone who isn't in it for the long haul, but the end result would be so worth it.  Madeline would gain a tiny bit of freedom from her diabetic life, and Rick and I would know we have done absolutely everything we can to give her the healthiest life possible.   

We took our first class at children's hospital to learn all the insulin pumps that were available and how to use them.    All three of us had a three day trial of wearing a non-working pump just to see what we thought of them.  Omnipod, Medtronic and Animas.   In the end, we decided the Animas insulin pump was the right choice for Madeline.  I was nervous, excited and stressed all at the same time.  I completed the paperwork immediately and sent everything in to Animas.  I was overjoyed to learn that Animas would take care of all the paperwork between the doctors office and the insurance company.  Why did that seem too easy?  Now I just had to wait.  And wait.

The paperwork was submitted mid December, but neither I, nor Animas, had heard anything from the insurance company.  Ruh-Ro.

I finally received the unwanted call from Animas this week letting me know Madeline had been denied approval for an insulin pump from the insurance company.  "Not medically necessary" was the reason.  Really?  Gee, what would make an insulin pump for a person with a busted pancreas medically necessary?  I could go on a rant very easily over all the reasons I found this to be a ridiculous reason, but since I do not have the official denial letter yet, I will give the benefit of the doubt, and keep my mouth shut - at least on my blog :).  We have chosen to appeal this decision, and will jump through whatever hoops it takes to get approved.  Madeline deserves it.

Not medically necessary.

Ugh.  That's all I can say........