Time Flies....

Maddie drew this when she was 5 years old, on the day she was diagnosed, while we were getting our first 12 hour crash course in diabetes. It's still hanging in the endocrinologist's office 7 years later.

Some Updated Pics

My girl on the first day of Middle School~





Shopping for some healthy stuff~






Happy 12th Birthday! (last October)






Snapshot at the Endo's office. Gotta love a girl that can pose anywhere...even the restroom... Incidentally, this was after we found out her A1C had come down a lot, hence the huge grin.






One of the things that Maddie L.O.V.E.S to do!! (This was taken when she was walking Coco back to the barn after a hard lesson).

The Dreaded Appointment

Every other month we see our endo, and on the way there, I dread finding out what Maddie's A1C is. This time was no different. Alas, the A1C machine (don't know what it's called) beeped, so I asked. She had gone from 8.5 to 8.7. Although I was glad she wasn't in the 9's, going UP was not the direction that I was hoping to have gone.

I allow Maddie to be a little higher at night, or I don't give her the complete correction, because I have this eminent fear that she will crash during the night, and not wake up. Because whatever the number is, I don't know if it's going up, or down at a rapid pace.  (We do not have the CGM at this point in time.) This is my problem--she's too high during the night and first thing in the morning. And it's all my fault. I've come to grips with this. I take full responsibility.

I HATE DEALING WITH THIS STUPID DISEASE.

In addition to screwing up her A1C, her height and weight has gone from the 50th percentile, to the 25th percentile over the last year. Yeah, I know--I'm such a great mom.....not. My child is shrinking. Well, actually, she's not shrinking, she's just not growing.

I HATE DIABETES!!!

"But she's picky!" and "She isn't hungry much of the time!" and "She eats healthy food MOST of the time, so she's probably not getting enough calories!" These were my ignorant and useless justifications for my reprimanding from the doctor. Basically, she's not eating ENOUGH, therefor, not getting enough insulin. Could this be any more difficult to grasp in my little blonde brain?

Everytime I read other type 1 moms' blogs, I learn something new--like how the humidity can alter blood sugars, or how allergies to pollen can send you through the roof. Will I ever get the hang of this? I mean, come on, people--you would think that after almost 5 years, I would have gotten the hang of this by now.

Nope. Did I mention that I hate this stupid disease?

Whew

So sorry, fellow blog followers.  November and December have been very busy months.  As far as numbers, Maddie's been up and down, but her A1C went from 8.5 to 8.3 in 3 months.  That's a start.  I wish it were back to 7.9 when she started 2nd grade, but I'll take anything that's headed downward.  I'll start back up with my much needed and much loved blog time as soon as our schedules get back to normal, and Shawn and Reilly go back to school.  At least that's my intention....
: )

My MasterCard Commercial

Insurance                                                $7200/year

Insulin Pump                                            $8000

Glucose Monitor                                      $500

Testing Strips                                           $840/year

Insulin                                                      $420/year

Lab Visits                                                 $300/year

Endocrinologist Appointments                    $360/year

Glucose Tablets                                         $100/year



My sweet Maddie Belle        PRICELESS

Bravery

When Maddie had just turned 2 years old, she fell off of a bed and broke her arm.  At the time, the nurses thought it was Nursemaid's Elbow, and tried several times to put it back in place.  Nope.  It was broken, and they were further torturing my child.  Maddie endured an all-nighter in the ER, x-rays, and the putting on of, and removal of (with a saw) a cast, all around the age of 2. 

When she was 4, Maddie was diagnosed with amblyopia, which is when your vision isn't the same in both eyes, so they have to correct the "bad" eye so that your brain doesn't train itself not to use it.  My tiny little 4 year old girl had to endure a rigorous ophthalmology appointment, then get glasses (but fortunately no eye patch.....arghh), which at the time was devastating to me.  Now, not so much.

Anyhoo, Maddie has been put through the ringer as far as doctors and ailments were concerned.  She didn't visit the doctor without lots of screaming and gnashing of teeth until she was almost 4.  Fortunately, she was over that when she endured the whole diabetes thing.  But it never ceases to amaze me how brave she really is after all.

Keep in mind, her fingers are calloused from the repeated sticking to check her blood sugar.  Her backside is spotted from changing her pump site every 3 or 4 days.  She doesn't even wince when I shove a needle inside of a tiny plastic tube into her skin.  She is the bravest person I know.

Now, I've had my fair share of pain.  I've endured being smashed in a car by a Volkswagon Bus, breaking multiple bones and taking out the window with my head and elbow and leaving an 8 inch frankenstein scar down my leg.  I've broken multiple toes, I've had surgeries, and I've birthed 3 babies.  I have a high threshold for pain.  I can handle pretty much anything.

Last year, Maddie and I went to get our eyes checked.  A really good friend of mine is a CPOA at a huge ophthalmology office in town.  Because Maddie has had problems in the past with her eyes, she was a little worried about the appointment.  I knew it would be easier for her to get "checked" by Miss Lisa, than some stranger.  She got all the tests done, got drops in her eyes, and had her eyeballs poked and prodded. I could tell she was nervous, but, nonetheless, she didn't make a peep.   Then it was my turn.

I'll show Maddie how this is no big deal for me.  How she shouldn't be worried about the eye tests, or getting eye drops, or the wretched glaucoma test.  I haven't had many visits to the eye doctor, but how hard can this be?  What's a couple of puffs of air?  No biggie.....

On about the 5th try of trying to get me to keep my face in the contraption to get puffs of air in my eyes, my friend Lisa said, "We'll have to do the eye drops for the glaucoma test.  You keep moving your head before the puff of air shoots out."  I never said I didn't have a problem with anxiety.  I laughed a little, so that Maddie could see that no, it was still no big deal.

As Lisa was putting the drops in my eyes, she proceeded to tell me that they would numb my eyeballs because she was going to "tap" on my pupil with an instrument.  I don't know about you, but the thought of not being able to feel my eyeballs makes me a little woozy, not to mention the whole tapping thing with the instrument.

The next thing I remember was Lisa waking me up, trying to get me to drink a sugary drink.  Not only had I not handled my numb eyeballs, but I had passed out!  I looked over at Maddie and she was giggling.  She wasn't just giggling to herself, she was laughing at me!   

More recently, Maddie's endocrinologist nurse wanted us to try out a new lancet device.  (That's the thing that sticks your finger with a needle).  She claimed that it was supposed to hurt less, and she wanted ME to try it out to see.  I don't know what she was thinking, but whenever a sharp pointy thing goes into my skin at a high rate of speed, only to bring blood, it's going to hurt.

"Just try it, Marcie.  You'll see that it is much less painful than her regular lancet device."  Oh no.  She wants ME to stick my finger.  That's going to hurt!!!  And what makes her think I've tried the lancet device that she uses now??  Then it's going to hurt for 30 minutes and I have to act like it's not big deal.

OK, I had to put on a brave face for Maddie.  After all, she stuck her fingers every day, 6-8 times.  Surely, I'm not that much of a chicken that I can act like it doesn't hurt in front of my kid.

I brought that thing up to my shaking finger, and held my breath, ready to stick myself.  I looked over at Maddie, who was rolling her eyes, and I pressed the button.

"Ouch," I said calmly, but what I was thinking, "OOUUCCHH!!!!!".  As the nurse squeezed my finger to bring up what seemed like a gallon of blood, I was wondering if that had hurt any less than getting kicked in the stomach.  My finger was pulsing and red.  I was sweating, and feeling a little faint.  It only hurts for a second....what a crock--it was throbbing, and did for at least 20 minutes.  I don't remember what happened in the appointment after that, because I was seeing stars, and my finger was reeling in pain.

How can a person so young and so small endure this every day??  I don't know anyone braver than my girl.

  

Diabetes 101

It was a Wednesday afternoon. When we walked in, the nurse took us to a conference room. Whew--no examination room, no paper liner on the table, no tiny sink or stool with wheels. Just a table and 4 chairs. It wasn't anything intimidating for a 5 year old. And there we sat from 2 p.m. until it got dark outside. I don't even know when we left. All I knew was that my mom had my 2 year old and we had a sick daughter.

We learned A LOT about diabetes that afternoon. We learned about cells, blood, sugars, the pancreas, how to give shots, how to check glucose, what to do when, and what to do where. It was information overload. I remember thinking that this was more information than I had taken in during all 4 years of college.

Then it was time. The doctor wanted ME to give my child a shot. He wanted ME to stick a needle in her smooth tanned skin. I washed my hands. I prepared the insulin. I screwed on the needle. I wiped down her skin with alcohol.

Now, we don't have cats, but I've heard that it is almost impossible to get a cat into a toilet. Why anyone would want to put a cat down into a toilet bowl is beyond me, but nonetheless, I've heard it's tough. Supposedly the cat clings onto the side for dear life, all the while scratching, biting, hissing, and screaming. Clinging to your arm, so as to not get wet from the water.

Administering this shot, was like trying to get a cat in the toilet. Once I held up that needle, we had to catch Maddie. Once we had her in our grasp, we had to physically hold down her arms and legs. We had to hold her still, because she was NOT going to let us near her with a needle in our hands. After the even-keeled doctor and nurse tried for about 10 minutes to talk her into letting us stick her, Shawn stepped in and held her. When she wouldn't allow him to hold her down, the doctor, who is probably 5 feet tall and in his 60's, grabbed Maddie, while the nurse held her arms and sat on her legs.

I had a tiny window of opportunity to stick her teeny little tummy with this stupid needle. I just went for it. I held my breath, pinched up her skin, and let her have it. I was sweating, my eyes were burning, the lump in my throat was painful, I was nauseous, and I was shaking. Shawn was as white as a ghost and plastered up against the wall in the corner.

The sound that came out of that child's mouth was like nothing that I had ever heard before. Not only was she being held down by 2 total strangers, but she was getting a shot in her stomach, and it was being administered by her mother. The person that promised that she would never let anything happen to her. The person who loved and hugged and kissed her. The one that held her and rubbed her head when she was upset. The one that picked her up when she skinned her knee and carried her inside. The one that sat up all night when she was sick. Hopefully she would forgive me for this.

When it was over, I was relieved, Maddie was an angry mess, the doctor and nurse were stunned, and Shawn was still quiet and pale. What a relief that it was over!! Now, I only had to do that exact same thing 6-8 times a day for the rest of her life. Oh, and by the way, I only have to check her blood sugar 12 times a day until we get this under control.

As we were leaving the dark and vacant doctors office late on that Wednesday evening, the doctor announced, "I'll see you at 9 in the morning. Be prepared to stay until at least 6 p.m. Oh, and you'll come in all day on Friday, too."

We had a trip to the beach planned for that weekend. Shawn was going on a missions trip the week after that. What in the world were we going to do? I don't know if I can handle this. I guess I don't have much of a choice.

A Miracle on June 28th, 2006

Fortunately for us, there was a new pediatric endocrinologist in town. He was well known for having had articles published in medical journals, for being one of very few pediatric endocrinologists in the state, and he was the first endocrinologist to have a diabetic patient healthily go through fertility treatments, pregnancy, and a healthy birth in the 1970’s.

However, he was booked solid. Not taking new patients.

Somehow, our pediatrician worked a miracle over the phone. Not only would he see us, but he would see us that day. He would tell us what to do. He would tell us what we needed to know. He would help us get our baby girl healthy again.

I had no idea what was in store for us over the next 3 days.