Sunday, November 29, 2009

My "American Girl"

A few weeks ago we received an email from our local JDRF chapter. The "American Girl" company is hosting a fashion show to benefit JDRF for the holiday line. Of course you would need a couple of "D" girls to participate in the show! So guess who's chosen? My very own "American Girl" Maddison!!

We got the email last week saying Maddison was chosen and Maddison has been practicing her modeling ever since! She is SO excited! Another little girl from our support group is a chosen one too! HOW FUN! A day later, it was requested that Maddison come to the news station to do a live promo for the fashion show. Wednesday is the day for the news shoot! Saturday we have rehearsal for the show that follows on Sunday! I am SO happy for Maddison! The best part is, no makeup allowed! Just pure and natural "American Girl" beauty. JDRF has given us so much these past few years. Such fabulous opportunities that we never would have had otherwise. What a blessing to have them supporting US in this journey!

Sensor #3?

Saturday was day 6 of Maddison's 2nd sensor. It was working perfectly, but her skin was itchy, puffy, red and irritated where the Tegaderm was placed to cover it. I even tried a few days before hand to let the skin "breathe" without any tape covering it. It just wasn't gonna work. Skin needs to breathe. Exactly why I feared starting the CGM in the first place! Looking ahead, I figured if Maddison associates the CGM with such irritations she will be more likely to dread it or "hate" wearing it. So, sad as I was to remove the sensor, I did anyway just to relieve Maddison's skin irritations. It hurts my heart to see her reddened irritated skin from the tape. Isnt a pump site enough?

Tonight being Sunday I'm planning on inserting Sensor #3 for back to school tomorrow. I feel guilty. Is this for ME or is this for HER? Yes, the CGM has caught some lows. Yes the CGM helps me to see exactly where highs or lows begin, even with less finger pokes. All those thing certainly benefit Maddison. She just doesn't understand all that. And, she doesnt care. She's already complaining about my plan to insert the sensor tonight. "It isn't even accurate mom!" or "I hate having another site!" is all she's been saying. I cant get a word in, and, I dont really know what to say to any of that. It just makes me wonder. Is it right for me to go against her wishes? Is it wrong for me to force her to wear this CGM? Is this likely to cause more "control" or "emotional" issues than its worth? Maddison just having her say because kids do with anything anyway? Its so hard to know.

What happens when Maddison hits the teen years and wants to go back to injections? Would that be her choice that should be followed, or is it my choice as the parent? I never even wanted to start this CGM, for so many reasons.....then I felt I HAD TO because of crazy lows. Now that we have been using the CGM for over three weeks, I feel I "need" it and rely on it ALOT. Last night Maddison didnt have the CGM on for the first time in many days and I can honestly say I wasnt sure what to do over night! Even though Maddison sat stable in the 130's all night.......not having a CGM to refer to for every trend made me weary of sleeping until my next alarm. Crazy!!! It was like Diabetes and sleep were all new again! First I didnt want this CGM, now I feel like we cant live without it. Yet, Maddison wants nothing to do with it.

Thursday, November 26, 2009

Thanksgiving 1996

Thanksgiving to me, means Hannah. My first love. Ok, my 2nd besides her Dad :) I was a young 19 when Hannah was born, but cherished my baby as any mother would. I dont think I even put her down for months! Returning to work in the ER just 6 weeks after she was born was probably the hardest thing I had ever experienced in life. I cried every day for months. I just wanted to be with my baby. I didn't want for her to have to drink pumped breast milk from a bottle. I just wanted to be home, even though she was home with her Daddy. Hannah came into this world on November 28th 1996which was Thanksgiving morning. From that day forward, Thanksgiving became even more than what it ever used to be.

Thanksgiving marks a day of giving thanks for all we have in life, a day of appreciation and celebration. Thanksgiving to me, means Hannah on top of all that. My sweet, beautiful, silly Hannah. Just recalling memories of the past 13 years at this moment brings tears to my eyes. Actually, alot of tears!! I could never imagine 13 years would have passed so quickly. Tomorrow my Hannah will be 13! I'm having a difficult time not crying when I think about that.

She's a young woman, not so much a child anymore. She's funny. Always telling stories with such enthusiasm and drama. She's so caring. She has a heart of gold, though most times she tries to show her 13yr old tougher side. She's an amazing athlete, her passion of Volleyball will drive her to higher places in life. I know so. She's so darn smart. I still remember her first word was "look" at the young age of 9 months. Seriously. Sentences before the age 2. Coversations soon to follow. She was such a little thing, still no teeth yet but talking to anyone that would listen. I miss my baby Hannah, yet I ADORE this young woman who stands in her place.

So yesterday Thanksgiving was celebrated at Josh's Mothers and Grandmothers house with all his sisters and their families. My family also gathered. My parents, my sisters, and my too cute little Neice Sami (who made me think of Hannah being that age!) What a beautiful day! Everything was perfect. Over the last 13 years, this was only the 2nd year that we didnt do Thanksgiving here at our house. I must was a VERY nice break! The kids and I still came together and helped with lots of cooking before hand. Maddison had her little apron on an couldnt get enough! This Thanksgiving was just amazing, So relaxing and full of family and great conversation. We were home by the evening, and I even got to sleep in until 11am today! WOW! I think I could run a marathon! Of course, sleeping until 11 did include a midnight BS check, (me and apple pie dont mix!) a 4am wake up when Hannah got home from midnight shopping at the mall and a 8am BS check to assure the CGM was still on track! Today? Its 80 degrees! Time for a nice long bike ride I believe :)

Tuesday, November 24, 2009

Up Up Up!!!

After nearly 3yrs of dealing with Diabetes for Maddison I'm still amazed when insulin doses increase so dramatically day by day. What was 3.40 units of basal a month ago has now doubled to 6.50 units and STILL needs lots of adjusting. AMAZING what happens inside that little body. AMAZING how we stay on top of all this! Ratios and basals......UP UP UP!! Will I ever find the right balance again?

CGM insertion #2 was a success. No difficulties. No pain. No issues. Accuracy of the CGM vs finger poke is pretty darn "predictable" within 3-30 points. Until Maddison rolls over while sleeping onto her bottom where the sensor is located. A little push to roll her back over, and the CGM finds its way back. CGM.....I think I love you!

I've been scrolling through the 24 hour screen on the CGM to see where Maddison shoots up at night and during the day. There it is....a little roller coaster hump.
9am. 11am. 8pm. 2am and 4am. Why is it that I'm adjusting basals and boluses more aggressively than ever but nothings budging? How do you double insulin dosing yet all you continue to see is the same old numbers? All we get is numbers 220-350. Its so weird how you change everything but still get the same result!

Right now, I still finger poke at night. I dont "trust" the CGM enough to assume it is accurate at night. This is exactly why.....

ARTICLE, young man dies in his sleep

How will I ever be able to get rid of my night time fear of lows when I come across an article such as this? Knowing this can happen and hearing about it are two different things. I really wish I didnt see this article. My heart aches for this family and for the loss of this young mans life. Can you imagine the guilt his parents must feel although WE know they aren't to blame?

All I keep thinking after reading this article is

"What about when Maddison's double insulin needs come crashing down without notice?" Will I catch those lows in the night? Sometimes I wonder how us D parents stay sane.

Despite the terrible feelings that article inflicted when I read it, lately I'm just doing. Adjusting. Tracking. Logging. Without much worry. I'll take the highs over our last months of lows any day. This difficult spell will pass. It is what it is. I couldn't make insulin adjustments any faster if I tried. I dont think I have ever had this kind of outlook with Maddison's high blood sugar streaks. Maybe this time is different because I KNOW I'm doing my best. I KNOW I'm all over it, and I'm not doubting myself as a pancreas. Kids grow. Things change. Alot. Maybe 3 years is my magic number. Maybe 3 years is how long it takes for me to learn that I really am doing my best in this battle. 3 years, seems like an eternity.

One more day! One more day of work and school and then we get 4 days off! YAY! My Hannah will be 13 on Saturday.....that's approaching a bit too fast! My Hannah was also a turkey baby :) Born at 8:38am on Thanksgiving morning 1996. I will always cherish Thanksgiving day as the day Hannah was born. -Sigh- How DO they grow UP UP UP so fast?

Saturday, November 21, 2009

Day 6 CGM

Today will be day 6 of Maddison wearing her CGM. My thoughts? I LOVE the CGM for the arrows it shows when blood sugars are rising or falling. That itself, is for me, the most helpful part. I also love that the CGM has stayed within 2-30 points at all times of Maddison's actual blood sugar. (Oh except this morning at 2am when it read 150 but Maddison was actually 280....sleeping on it I think!) The part I knew I would hate is dreading changing the sensor. Not because its painful (I shouldn't speak too soon, we have only inserted it once!) but simply because I despise Maddison having to wear yet another device. I hate seeing the tape marks and red soreness with a little red dot. Why all these devices? Isn't it time for the integrated sensor in the pump site!!?

-Sigh- The first few days Maddison said she didn't like the CGM, just because. Today she said she doesn't mind it. I would LOVE to use this CGM every day, always, with just some breaks when things are going well. But, I dont know if I can bring myself to have Maddison do so. How do you find enough room on that tiny body for 2 sites? How do you not cringe when the tape comes off, the sensor bleeds and it all becomes itchy? I just dont know. I love this thing, but I just dont know if its worth all the extra "little" things it carries with it. On the other hand, I'm SO tired of 15 finger pokes a day. Maddison's poor little fingers are mottled with so many holes. It just breaks my heart.

After all the lows at school (that have disappeared) Maddison's numbers have been crazy. There isnt any stability. I was forced to run her higher to avoid lows, but now that those are gone her insulin needs have skyrocketed. We are up to double dosing around the clock. All basal needs have doubled. Ratio's changed. Yesterday was the first day I kept Maddison under 180 all day for weeks! WHAT A RELIEF!! I WAS SOOOOO HAPPY!!! Until 8pm that is. 400's on Thursday night and 300's last night. I'm really tired. I've been up every 2 hours at night for the last week. I'm tired of Diabetes, but surprisingly, I'm not getting discouraged with these highs as I normally would. I guess I owe that to the CGM. Just being there the CGM makes me feel more capable of getting us to "stability" once again! Weird, I dont know why!

I suppose I feel armed and ready to battle these highs because I can SEE them coming. Up arrows have been my friend. Less finger pokes is true....this is month 3 of crazy numbers. I keep asking myself when this will end and I will be back to not thinking about numbers, just doing. I just don't see the end in sight. I still haven't had the actual CGM training....maybe I should start there.

Thursday, November 19, 2009

Thankful Thursday

Some things that I am the most thankful for are those that drive me crazy the most....

**My husband, yes, he mostly drives me CRAZY.
**Our two stinky Goldens that only know love, play and happiness in life
**My job that bores me to death, yet pays good and treats me like gold.
**My Swiffer dry mop. Keeping doggy floors clean, yet I hate that I need you so much!
**Maddison's birds that make such a mess, yet Maddison enjoys/loves them so much
**Insulin. You are so hated, yet loved and cherished more than anything.
**Our health insurance, even though you suck, I'll take anything we can get!
**Our school nurse, but sometimes I wish you would just LISTEN and not reply :)

Other unusual things I'm thankful for.....

**Feather comforters- enough said!
**cell phones....helping me track down my kids!
**Hair straighteners- My hair is totally bushy 80's style otherwise!
**2c chocolate milk mix
**BBQ grills-SUMMER!
**a nice glass of wine
**Febreeze-stinky pet house MUST HAVE!!
**Furry socks
**DARK Chocolate
**Apples-sometimes I like them MORE than chocolate!
**Green Tea
**singing daughters as I blog :)
**stuffed animals-a necessity for Maddison's sleeping areas
**Zebra stripes-always makes me think of Hannah
**Google-for those that MUST know ALL details
**Clean sheets scented candles

WOW, I could go on all day!

Wednesday, November 18, 2009


Today Maddison's CGM continues to be right on track with her meter BS. Too bad we are going through a high spell and everything needs adjusting anyway. I would have liked to see the way things were BEFORE. BEFORE highness struck again. Right now all I see on the CGM is up, down, up up up, down, up up. YUCK. What were things like BEFORE? I mean, back when things were "easy" to figure out? The normal times of minor adjusting? Right now we are in overhaul. Adjusting everything.

Back in August Maddison's A1c was 7.2. October revealed 7.7, her highest ever. That was hard to swallow, even though I know that number is still considered good for kids. Looking at the trends on the CGM doesn't really tell me anything that I dont already know. It just provides more numbers for me to feel bad about. Tonight we have to remove the bandages and dressings that cover the sensor leaving it stuck in place. I betcha Maddison will complain about the tape itself, even though she didnt flinch with insertion. Sometimes its all the little things with Diabetes that get to us. CGM high alarms bugged Maddison all day at school today, I had them set at 250, but I guess we are looking at numbers surpassing that lately. Tomorrow I will just have to turn the alarms off!

Maddison's arm site was pulled out at school today. Luckily I was at home and was there to replace it within minutes. Just the aide worked the second half of school today. She was totally overwhelmed with kids everywhere. The things those kids go to the nurse for, it never fails to amaze me. Kinda like the ER. One's illness is anothers normal day I guess. One girl complained of bumps inside her mouth. One boy stubbed his toe. One tiny kindergarten cried when his flip flops broke. They were his favorite. It was so sad, but cute to see him standing there holding his cherished flip flops. So, I gave him a hug. :)

After replacing Maddison's site, I was on my way to the Sports Med Doctor with Hannah. What a waste of time and copay. 10 minutes is all we spoke with him. Seriously. He really didnt listen to me at all. According to him, Hannah does not have Torticollis, she has a neck strain with muscle spasm. And he left the room just like that. -SIGH- Now Hannah will need to go to Physical Therapy 2-3 times a week until her spasms resolve. I think I'm drowning in copays!

Tomorrow I plan to post THANKFUL THURSDAY. All the random things I am thankful for in life besides the obvious. Anyone with me?

Tuesday, November 17, 2009

Not a big deal

Remember back to the day when changing from shots to a pump was like moving to some foreign land? You weren't really sure it was the right decision. You were scared and overwhelmed. You would ask yourself so many questions.....HOW can I make my child wear this device 24/7? Do we really want to use an insulin pump and have Diabetes be so visible? How will my child feel about it when everyone questions them about the tubing sticking out from underneath their clothes? Remember how deciding to pump insulin was SUCH a big deal? Remember how suddenly one day the pump was just an extension of your child and not a device?

Well, thats what I THOUGHT trying out a CGM would be like. I thought I would have all the same emotions as when we started the insulin pump. I DID NOT want this thing attached to my child. I DID NOT want to admit that another device may be helpful. I dont know why. I guess we ultimately just want Diabetes to be "easy" for our kids. We dont want fancy devices. We just want to do what we are supposed to do with insulin and food and have Diabetes always cooperate. It's taken me a LONG time to admit that just doesn't happen with Diabetes! I've always been one to find the answer for a high or low, at least I convince myself of that anyway. I think thats how I maintain a feeling of CONTROL over this disease. But not these days.

I was SO worried starting a CGM on Maddisn. Another set of numbers to analyze. Another potentially painful insertion, but, Maddison's first sensor went in without notice. Not a flinch. I must say, that alone made this new device a keeper. If Maddison had pain with insertion that first time I would have given up. Without a doubt. Our kids go through enough pain with finger pokes and site changes. A CGM is optional. I would have said NO THANKS! Goodbye CGM! After just 48 hours I can honestly say this CGM is no big deal. Its not a stressor at all. Unlike the pump start for Maddison, I started this thing up and its been right on track ever since. Seeing the way Maddison's 24 hour graph shows her crazy ups and downs, thats amazing. I thought calibration alone would have been intimidating. I think I've got that covered.

Of course problems will arise and the CGM wont be perfect. But for now its nice to know that we had a good start. I'm learning things already. Like, bike riding spikes Maddison for about 20 minutes. Then she drops like a rock at the 45 minute mark. Without the CGM it would have taken us some painful lows to learn how she reacted to that type of exercise. But the arrows were there, showing us the drop. We stopped the low before it happened. Thats priceless. Now, what to do with all the other information this CGM gives? Right now Maddison is running a high streak the past 2 days....growing maybe :) Its painful to see those high numbers flashing updated every 5 minutes on her pump screen, I wont lie about that. Maybe I should just stop looking. Its addicting though. Amazing to see what is happening. For now, I'm relieved that the CGM really isnt a big deal. So much less overwhelming that I thought it would be! Lets just hope it stays this way :)

Monday, November 16, 2009

NOW It's working

NOW it's working. Double down arrows, a plummeting blood sugar after our daily bike ride. Within 15 minutes Maddison was down to 108 from 220 before bike riding. NOW I can SEE this thing in action.

Sunday night was time for Maddison's pump site change, then she asked me when it was "her turn" to wear the CGM. Can't deny that. After chasing lows from 9pm until
1am, it was time to calibrate a stable number into the CGM. The accuracy of this thing has been amazing ever since. Down arrows, double downs, whatever is happening in that little body of Maddisons, the CGM even catches up to the rise. Just 24 hours in to Maddison wearing this thing I am totally impressed. This CGM is ALL OVER these numbers, tracking them like I never would have imagined.

Maddison proudly wore her CGM for the first time to school today. A good calibration had the meter vs CGM readings within 10 points or less all day. Then came our after school bike rides. Racing is more like it. Hannah and Maddison like to RACE. No casual enjoyable ride here. Its an all out workout! Regardless of carbing Maddison up for rides, she still drops. THANK YOU CGM. You saved us multiple times today. Now....what will tonight bring? I've been reducing over night basals, because of course, the lows come hours after the fun as well. No luck. Dropping. Dropping. PB and honey sandwich with chocolate milk. Dropping Dropping. Tonight I have the CGM all ready to go to fight these lows. NOW that I know this thing is working, I have a much better peach of mind. Trusting it? Not completely of course, but at least day 1 has been impressive. We shall see what tonight brings.

Saturday, November 14, 2009

November 14th

Today I am thankful for insulin, thankful that Maddison and I are alive another day because of it. I appreciate syringes, finger pokes, testing strips, meters, insulin pumps and CGM's. Most days we don't really think about how all these things actual keep us ALIVE, but today we ar thinking. We are thinking alot. Thinking of all the others young and old out there that live this life just the same. I'm pretty silent today, I dont have much to say as I thought I would . Just alot of thoughts going on nside my mind about what this day really means. From the bottom of our hearts, Maddison and I are sending special cyber ((HUGS)) today, to all the D parents, the children with Diabetes, adults yound and old. Type 1's, Type 2's and all Type 3's. Hugs to anyone who loves someone with Diabetes!!!

Thursday, November 12, 2009

Found Feathers

Tonight we got a call from someone that thought they found Maddison's lost Cockatiel. We were SO excited! After school we made the 12 or so mile drive down to the University of Phoenix Stadium. Some of the office staff there had been holding the bird a few days, trying to find his home. Our birdy flew to the stadium!!??

Sadly, this wasn't our Cockatiel. BUT, we decided to take him anyway. Maddison presented the nice lady with her business card (yes she has an actual business card with HER name on it) and told her how she volunteers for Fallen Feathers bird rescue, and let her know we will contact the rescue about this bird and foster him until we find his home. This super nice lady was very happy we were willing to do so, and turned the Cockatiel over us. So what came next? As soon as we got home Hannah went to work for her sister....Ms Hannah, the best big sister EVER made Maddison this website in support of Maddison's desire to help all other lost pet birds.....

Found Feathers

Now THAT is what I call sisterly love :)

Is this thing working!!??

Day 2 of the CGM, it hasn't caught a low yet, though it does alarm AFTER I already know I'm low. (my low alarm is set at 80) I wasn't low low, just another 68 that FELT low low. My meter said 68 but the CGM said 85. According to the CGM I dont even have Diabetes!! I'm thinking it isnt tracking blood sugar rises accurately. Here is my last 24 hours......

Is that even possible? Is this thing working right?!!

Each finger poke today again revealed a number within 20pts of the CGM. EXCEPT after eating! (my highest meter reading today was 129 half an hour after eating and the CGM said I was still 75) I thought people say you can calibrate this thing well enough to be within 2-5pts? I have yet to see 2 up arrows or 2 down arrows indicating a rapid change in my blood sugar, so why didnt the CGM keep up with the rise? I think an experiment is needed to see if this thing is working right....I guess I should do a test! A candy test!! Where is that Halloween candy anyway? I think its time for me to do some experiments on myself. Ohhhh the torture :)

Above is my last 3 hours....a flat line. Hmmmm....Is this thing working!!??

Wednesday, November 11, 2009

The first 24 hours

After the CGM failed to catch my 51 blood sugar at 1am, I was a bit sketical if the darn thing was calibrated right or not. After my morning blood sugar check and over the next 7 hours, the CGM was within 20 points of what my meter blood sugars came back at. I suppose thats a decent calibration, but when I started to feel spacey with a 91 on the CGM (around 3 hrs post prandial) I knew I was really in the 60 range. Yep. Quick meter check showed 68. So what the heck? I can already see where this thing is going to almost be more work and worry than its worth. Trust is a big issue. I have my low alarm set at 90, knowing the lag time between blood and intersistial fluid. So, would the alarm ever have caught the low?

I was also relieved to see that my highest number all day was 148 after morning coffee. The CGM reflected that my BS remains incredibly stable, moving just a point or two up, instead of spiking, even after eating. No arrows pointing up today (showing fast increase in BS on the CGM) what so ever. TOTAL flat lines!!!AWESOME! Exactly why I try to pre-bolus everything! So, from 8am-2pm my BS stayed between 90 and 148, mostly hoovering in the 100 range. Thank you CGM!! That made my day to see a flat line!! Of course, thats just one day.....but I'll take it!

When I got home from work I got a little greedy and wanted a tighter calibration, so I took my number (68) which was stable from an hour earlier, and calibrated that. The CGM reflected it immediately. Then the hunger set in. I waited the recommended 20minutes before eating after calibrating, then had some chips with melted cheese and salsa. YUM! The CGM is now 70 points off!! It never caught up to my rising blood sugar!! 30 minutes later my finger poke says 170 but the CGM still says 103. ACK!! Thats what I get for being a greedy CGM user I guess. Now I wait and see if the darn thing ever catches up.

Which maks me the hell would I ever be able to get a good calibration on a 9yr old who is running, eating and jumping all day? It already seems impossible. Trust? Ahhhhhhhhhhh. The first 24 hours with this CGM and I have learned alot. I spent 6 hours last night reading the ins and outs from other users on the CGM users yahoo group. Yep, I've learned alot. But I've also got some serious doubts when it comes to ever making this thing work for Maddison. I'm anxious to see how many days I can get out of one sensor. I'm totally addicted to looking at my number reflected there on my pump every few minutes too. I must have looked like an OCD chick all day at work, LOL!!

Flat Line

I dont know what happened to the low blood sugar "alarm" that should have sounded when my BS hit 51 at 2am....CGM was still reading in the 120 range. (I had a correction before bed that caused the low) But this flat line makes me pretty darn happy, assuming it is accurate of course! :)

Tuesday, November 10, 2009

Look what I got!

Yesterday I was serious when I said I won't be blogging until I have something nice to say. Well, guess what?! I do have something very nice to say!! Look what we got!!!

Our Minilink CGMS came today!! I couldn't even wait for training before giving this new gadget a try!! I know, bad me! I read the books and studied for about an hour before I told Josh to slap it on me. I'm wearing it on my lower back area, the "muffin" area where I have the most chub. Not a bit of pain with insertion, but let me tell ya....that needle is intimidating!!

Already having the pump meant the insertion of the sensor already made sense in my plastic pancreas functioning mind :) Too bad I can't get the pump to respond with anything but a "BAD SENSOR" error!!!

Actually, when I first started the sensor, the transmitter was communicating with the pump just fine, then after about 20 minutes it alarms and says the sensor is weak. -SIGH- And so, now life goes on with me having to troubleshoot yet another device and question all sorts of new things. We shall see what this CGM has in store for ME before inflicting its irritations on Maddison. Once I feel I "get it" I'm supposed to try this CGM out on Maddison. Maybe. I'm still leaning towards anti-CGM for Maddison (for MANY MANY reasons) but after all her crazy lows at school I have to approach Diabetes with an open mind and simply aim towards safety at this point. Wish me luck in getting this darn sensor to work!!!

Monday, November 9, 2009

Torticollis and crazy medical expenses

It never fails to amaze me just how quickly the day can turn from one plan to another. A typical Monday morning, dragging the kids out of bed, making breakfast and lunches while the girls giggled at the silly birds whistling in the other room. I dropped the kids off at school, then suddenly they turned around. Maddison started to run towards me waving her hands, as Hannah fell behind holding her neck with tears streaming down her face, sobbing. Oh great. Here we go again.

This is the 3rd time Hannah has had this kind of pain. The first onset came back in August, an entire 28 hours after an 8hr long sand volleyball tournament. Hannah was fine until SUDDENLY her lower neck/shoulder area spasmed in pain. You would think she broke her neck in a traumatic car accident. She SCREAMED. PANICKED. CUSSED (like a sailor!! SHE GETS THAT FROM HER DAD!)Hannah wouldn't move. We were right in the middle of a family party and she never came out from hiding. She cried in her room for hours instead. Full tears. We have all slept on our neck wrong or had neck spasms.....and YES, it does hurt and it does spasm alot....but 3 times of this same extreme pain followed by stiffness and inability to turn her head for days? I dont think anything is normal about this.

I'd like to think Hannah is a drama queen, but I always remember when she flipped off her bike in 5th grade. I talked her through the pain, even all through the night. Her arm looked fine. I sent her to school the next day and the nurse ended up calling. Swelling finally set in, so Dad picked her up from school and went to the Urgent care. Fracture. Right there on the xray, plain as day. Maybe she isnt such a drama queen afterall. I win the best mom award for that one! :)

Hannah's second issue with this pain came weeks later. No volleyball involved, and the pain struck just as I was dropping her off for school. I wondered if the weight of her back pack triggered it. Same thing as the first time, though not as severe. Same side. Same generalized area. I took her to the PED anyway. We were referred to a Sports Medicine doctor, urged to stretch before playing volleyball and told to apply ice as needed. Diagnosis, rotator cuff injury. Hmmmmm......

Today for some reason I felt we were looking at something else. Why the sudden onset AGAIN? Why is the pain now on the opposite side just below the base of the skull? Why the dizziness in weeks past? Hannah's was freaking out in pain. Surely this is a nerve thing right? After the first experience with this pain I read about everything from "Impingement" to over use stressors to muscle weakness. The whole base of the skull thing freaked me out. So, we proceeded to the Urgent care.....when they were closed I said SCREW IT. We will go to the ER and hope for a better answer. $150 copay is worth it to ease my mind and alleviate Hannah's pain right? NO. I guess not.

Diagnosis "Torticollis" per the ER doc. Motrin. Ice. Follow up with your PCP in 5 days. Continue to see Sports Medicine. (which we never scheduled because we thought this was a simple sports injury that went away!) The ER doc did manipulate Hannah's neck and show me how to ease the muscle tension. But other that that, I wasted $150. UGH. Hannah's laying in bed. Has been for the last 9 hours. She can't move. I'm one to always believe there is a reason. Sorry, thats just me. I need to rule out everything else before I come to a decision on what I believe. I'm also a googler which means I've been reading about TORTICOLLIS for hours today as I sat with Hannah in bed.

Why do I do this to myself?

"Torticollis (from the Latin torti, meaning twisted and collis, meaning neck) manifests as involuntary contractions of the neck muscles, leading to abnormal postures and movements of the head.1 It is not a diagnosis but a sign of an underlying disease process. Cervical dystonia, spasmodic torticollis, torsion dystonia, and acute wryneck all refer to the same process. Most of the cases presenting to the emergency department present as acute, acquired torticollis, although other congenital and infectious causes as well as trauma must be considered."


"Torticollis is also often seen as compensatory mechanism for another disease or symptoms. Patients present with a head tilt to compensate for an essential head tremor or for diplopia secondary to an ocular muscle or nerve palsy. Pediatric patients need a thorough eye examination to rule out a cranial nerve palsy or congenital nystagmus. Persistent neck muscle spasms may require referral to a neurologist or surgeon."

Ok, can we just rule out any weird stuff first? How many times means "persistent?" 3 times? 5 times? A year of disabling pain? What about Volleyball? Hannah missed practice today, and she's very upset about it. This girl lives and breaths Volleyball. How long do I let this go before I insist on a better answer? I did get an appointment with her PCP, but I already know it will be useless and a repeat of the last visit. Ugh. Its so frustrating when as parents we have to rethink everything for the sake of our kids health.

Medical expenses......last month Josh and I were looking forward to open enrollment for his employers insurance. We were sure a different insurance plan would save us tons of money. Looking over our options the other day, I decided we might as well sell our damn house and live in a shack. Looks like cost has once again increased while benefits decreased. There isnt one insurance plan option that covers "name brand" RX's at any level. Nope. NONE. Our copay for "name brand" strips and insulin remains at $160. Is that freaking ridiculous!!?? Test strips x's two. Insulin x's 2......OUCH. Then there is the DME that isnt any better. DME is covered at 60/40. Times two. Two insulin pumps. I guess I cant complain that THIS time there will not be a max for DME. That is a huge relief. BUT, our deductible went up to $900 per family from $300 on this "superior" plan. Apparently they think unlimited DME makes a "superior" plan. ACK! Our expenses only get worse each time enrollment comes around!

In this past week alone Maddison went to her Endo on Tuesday at $40. GI specialist on Wednesday at $40. Therapist on Friday at $40. I went to my PCP for a potential blood clot at $30. Then to the ER for an ultrasound at $150. Then today Hannah went to the ER at $150. OUCH OUCH OUCH. The future shows an outpatient scope biopsy for Maddison at $300. Sports Medicine visits for Hannah twice a week at $40 bucks a pop. Dental visits for us all, test strips at $160 needed YESTERDAY, and CGMS on the way from Medtronic which will top $450. Healthcare expenses are overwhelming in this house. CRAZY. It makes me want to hide.

You may not hear from me for awhile. I think I'm done blogging until I have something nice to say. Seriously. Until then, I will just keep swimming. Just keep swimming.

Sunday, November 8, 2009


What is it with bike riding that makes it require a billion carbs to keep from going low? Maddison FINALLY decided to try to ride a bike earlier this week. She took right off and never looked back. Since then, we have been taking nice long bike rides every day. I wish we could just set out without having to pack up first. The amount of stuff I need to pack just for a "carefree" bike ride is crazy!

Two meters. Two juices, glucose tabs, glucagon, water, cell phone and more juice. I gave Maddison a granola bar (17c) with a yogurt drink (13c)just before we left on our biking adventure. Thats alot of carbs. Her BS was a nice 167 to start, before the other carbs were eaten. About an hour later our bike ride came to an end. Maddison was 150. Hooray for getting it right!

I however, avoid bike riding like the plague. (even though I love it) I dont know what it is with using those different muscles, but I need around 60c to make it through an hour ride. My "normal" workout on the treadmill and doing interval weights requires nothing additional to keep me from going low. In fact, the adrenaline from running or walking on an incline will make me go high if I dont bolus a teensy bit. Very weird how different activities need different treatments. Before we left on our morning bike ride I had 75c without bolus. I came home at 92 with .3 active (from my morning coffee) Sometimes there isnt time for temp basals. Sometimes there isnt time for planning before last minute bike rides. We just do what we want to do, when we want to do it, and hope Diabetes co-operates. Today it did, and it just made my day.

What a great Sunday! The temp today will top 83 degrees. Its November and we are still in the 80's!! This month is going to fly by! Hannah will have 2 hour Vball practices on Mondays and Wednesdays with conditioning on Fridays. On the 28th my Hannah will be 13. THIRTEEN!!! Thanksgiving..... then the dreaded Christmas. I really dont like what Christmas has become. But, I do love Thanksgiving! The new year.....where is the time flying!? For now I'm taking a step back and enjoying the calm before the storm :)

Friday, November 6, 2009

Its Coming

World Diabetes Day is coming. Type 1, Type doesn't matter. Its all the same in the end. It all sucks just the same. Do your part to help us turn this world BLUE on November 14th.


Thursday, November 5, 2009

Silly me

Two days ago I had a sudden onset of pain in my calf muscle. I ignored it best as I could, until today at work when my entire leg felt as though it weighed 500lbs. I tried to convince myself it was all my imagination, and then as usual, it backfired and I began to have all kinds of crazy thoughts in my head.

I did have shortness of breath. I do have warmth there to the touch too. I can't have a blood clot! And then, I remembered this little thing called Diabetes. With Diabetes everything is a little more possible! So I tried to distract myself. No swelling, but my skin looks mottled all over now. I stood at my desk instead of sat. I stretched. I walked. My leg feels cold. I can't ignore it, what if I DO actually have a clot there? So, I called my doctor (who is awesome at always getting me in the same day) and scheduled a 2pm appointment.

I almost cancelled my appointment as the day wore on. I was back to thinking this was all my imagination. Ohhhhh the power of the mind! My doctor took one look at my calf, felt it and agreed it was warm to the touch, then left the room to call and get me a STAT Venous Doppler. Driving to the hospital I kept thinking "HOLY MOLY" "I might really have a blood clot!" and then I would turn right back around and say there was no way. Diabetes or no Diabetes, I'm FINE! Then the pain would pulsate and the mottling became purplish. Then my heart began to pound. "OH MY GOSH!! NOW I LOST THE CLOT AND ITS A PULMONARY EMBOLISM!!" Silly me, it was just a low. And, by the way....checking your blood sugar while driving IS as dangerous as texting while driving. I dont suggest you try it.

The doppler was quick. There isn't a DVT. I was on my way home and quickly counting my blessings. Counting each and every one of my blessings. I woke up this morning to very sad news all around me. A friends daughter lost her battle to cancer overnight. Wendy lost a dear friend to H1N1. So many health tragedies surrounding us lately. And here I was just FINE. HAPPY. HEALTHY. Thinking of the most precious family I am going home to. At peace with life. Hoping the others around us would be comforted soon again too.......

Wednesday, November 4, 2009

The GI Doc

Just back from Maddison's appointment with the GI doctor... He was GREAT! He listens. He validated my concerns. He is very caring and kind. Being that Maddison's labs came back completely negative of all Celiac Antibodies, we have 2 weeks in which he wants to try SOMETHING before moving on to the scope biopsy. I suppose I agree somewhat to that, even though Maddison has such screaming loud symptoms of Celiac.

*Stomach pain (since forever!)
*Dental enamel defects, per her Dentist
*Bone age delay (5yrs 9months when she was 8yrs 4months old)
*Short Stature
*Failure to thrive as a young child
*Dermatitis of her elbows
*And now, unexplained severe low blood sugar only after meals

The other thing is, a biopsy is the only "Gold Standard" of diagnosing Celiac. Just because Maddison doesn't have any antibodies of Celiac doesn't mean she doesn't have it. AND, my whole point is this....Maddison does not have any abnormal antibodies that indicate she has Diabetes either. SO MAYBE she just doesnt have the Celiac antibodies just the same. To me, that would make sense. Throw in some new crazy lows on top of all the other symptoms(including intensified abdominal pain)and we have no choice but to do the biopsy in my opinion. Two weeks on Prevacid, I'll give him that. But I'm still requesting the biopsy regardless.

Our super high ratio left Maddison 280's after breakfast today. Thats much safer than 20's for now, but its still hard to do. I know Maddison feels terrible because of it. Strange thing, I have Maddison's lunch ratio from 1:26 to 1:40 and she came back at 188....Hmmmmmmm that would have been a BAD low if her ratio wasn't so high. I think. I know....Ratio's change. Basals change. Sensitivity changes. Everything changes. But 20's dont just happen often for no reason when you are doing everything in your power to prevent them! I'm happy we are on our way to at least ruling out Celiac. We found a great doctor once again, and I know soon we will be back to "normal."

Whatever that is.

Tuesday, November 3, 2009

One very special Endo

Last night I couldn't sleep, even though I was so mentally exhausted all I wanted to do was sleep for days. Its no secret that I've been completely overwhelmed and frustrated to the core with Maddison's lows. Well, today one very special Endo changed all that. Dr "D" listens. She sympathizes. She understands. She goes the extra mile, especially when it comes to comforting and educating our children about their Diabetes. Dr "D" is a blessing to our family. I leave every appointment feeling like a fantabulous defeater of Diabetes! Dr D really changed the way I feel about all this nonsense lately. That is miraculous in itself!

Dr "D" agrees that Maddison needs to see a GI doctor based on her lows being only after meals. She also assured me I'm doing nothing wrong. I'm not missing anything, and there isnt anything else I could be doing that I haven't already. PEACE OF MIND. Now was the time I needed to hear that! I can't tell you enough how one simple visit today changed so many of my hard feelings! I feel like I'm cured of this guilt trip. I've been heard and my concerns are validated! Now we can move forward. A cancellation at the GI's office leaves us with an appointment tomorrow after school. Hallelujah!

I'm still freaked out by the fact that Maddison is unaware of her lows. We have always been very fortunate that Maddison was able to sense her lows before they got unsafely low. All I can do is run her higher right now and PRAY that someone can tell when she is off. School will continue to stress me out for now I guess. How do you send your kid to school knowing they dont feel their lows!!?? I've emailed Maddison's teacher and asked her to be especially attentive to any changes she may exhibit. I know she thinks I'm crazy by now. Thats ok. Sometimes we have to be.

Speaking of crazy....the school continues to suggest that Maddison no longer qualifies for an IEP. New testing results are back and we will be reviewing the results in a meeting the next few weeks. Today I contacted the ADA for an advocate. Now we will be good to go in this fight. It disgusts me that we have to fight for Maddison in so many ways. I guess I was naive to think the school is out for HER best interest.

Today Maddison woke up in the higher 300's with moderate ketones which is weird. New ratio from 1:14 to 1:20 left her in the 300's after breakfast. She wasn't low, and thats all that matters at this point. Maddison's A1c came back at 7.7% which I was HAPPY with. HAPPY. I was honestly relieved to hear I wasn't missing too many lows. Now we move forward and hope we find the answer to getting us back on track.

((Oh and thanks to everyone who offered suggestions on changing our meter. You never know what one might forget to consider! Unfortunately, these lows aren't a meter issue. We replaced all meters when these lows started back in Septemeber, and I even traded pumps with Maddison to assure they weren't malfunctioning.))

Monday, November 2, 2009

Unaware and TRUST your motherly instincts!!

Mondays have been hard for me lately. Every Monday starts the school week over, and each Monday that rolls around I fight to stay sane. Nervous. Scared. Worried. Every Monday I'm faced with asking myself what this week will bring for Maddison's blood sugars. Will she be back to running high? Will everything be good and then BAM! The lows come back? Mondays are not my friend. Especially not today.

Somehow I forgot to re-set my alarm after Maddison's 3am check. Probably because I was half asleep. So I leapt out of bed an hour later than usual this morning, school was to start in 15 minutes. That's never a fun way to start your day. Let me back track for a minute.....Saturday and Sunday Maddison did fine blood sugar wise all day, I even let her run a bit high because of Fridays low at school. Not one low all weekend until Sunday late afternoon which resulted from Maddison zooming around on her scooter and not coming in for a snack like she knows she should have done. I grabbed Maddison's meter and went to test her. She was 52. She didn't have a low feeling what-so-ever. Maddison has become unaware of her lows, which makes me a nervous wreck inside.

After 15c of juice Maddison was in the high 300's. I'm pretty sure that was a rebound. After rebounding, Maddison had a meltdown. She was very angry and mouthy to her friends. How do you excuse that? Knowing that Maddison just went through hell and back with her blood sugars, I had to distract. I apologized and explained to her friends, then I took them all for a walk. Maddison was feeling 100% better within a few minutes. Damn this disease is so complicated!

Anyway...back to this crazy Monday. What to do with insulin dosing for back to school...... Think drastic knowing lows like school this year! Zero basal for several hours prior to the problematic 9:30am time frame. 20 extra carbs without insulin for breakfast. Being that Maddison's breakfast was so late today, she wouldn't need to be checked at that normal time and could wait for lunch to check. As the 2 hour PP time rolled around, I felt like I wanted to puke. Literally. I was sure my nausea was nervousness in waiting to hear Maddison's number from the school nurse. Now I'm thinking it was motherly instinct. I called the nurse and asked her to check Maddison NOW to make me feel better. She called Maddison down to her office after telling me that "if Maddison felt low she would come in." NO I explained.....Maddison isn't feeling her lows! JUST DO IT!

35. Sitting in class at 35 without a hypo feeling what-so-ever. 20 extra carbs for breakfast. Same old same breakfast. A Zero basal rate. I don't understand. Hypo unaware. I can't help but feel like a total failure even though I know I have done everything right. How could we get to this point? What in the WORLD is going on? Maddison has had 8 blood sugars under 30 this year at school. First it was just after lunch. Then those lows disappeared and moved to mornings. MANY 40's and 50's and one LO. I immediately called the Endo. I had to leave a message. No one ever returned my call. Alone with this SCARY, CRAZY disease!! No one to make it right except ME!!

By snack time Maddison was 88 which is almost 3 hours after lunch. Seeing the 88 pop up in an email from the nurse, I wanted to just break down and cry. I'm scared to death to have Maddison be that "low" now. What do I do for the snack bolus? Do I decide to cut her insulin out for her snack? We have NEVER had lows this school year after snack time, so I thought Maddison would be fine with the normal bolus for her carbs. I should have listened to my first reaction of fearing the 88. An hour later I started to second guess myself, so I called Josh from work asking him to check Maddison as soon as she got home from school. That would be 1 hour after her snack. Maddison was 24. TWENTY FOUR. Josh immediately re-checked the 24 hoping it wasn't true. 241 stared back, so Josh assumed the 24 was wrong. ((WHY DO PEOPLE DO THAT!!??)) He doesn't understand the rebound effect no matter how much I explain. Two SERIOUS LIFE THREATENING LOWS IN ONE DAY. Maddison was talking and seemingly fine. But inside, insulin was sucking the life right out of my baby. Coma, seizures.... Diabetes could have taken her LIFE. TWICE IN ONE DAY.

Is this seriously happening? WHY!!?? Now all of a sudden we have lows in this time frame too? SOMETHING isn't right. I wont let Maddison go under 250. I cant. That would be too dangerous. Are these lows going to strike at night any day now? What am I supposed to do!!?? Headaches. Stomach aches. Mood swings. FEAR. Maddison and I are both a mess.

The good news is, tomorrow is our 3 month appointment with her Endo.
If Maddison's A1c comes back reflecting these HORRID lows, its gonna be bad. I will lose it. I will have a serious breakdown. RIGHT. THERE. IN. THAT. OFFICE. It wont be pretty. Josh has this week as a vacation week and is off work. He will be right there with me, thank goodness. Tomorrow morning? Every damn day we start over don't we? I guess I don't give any insulin for breakfast. I'm so ticked off that the Endo's office never called me back today. I guess we really are alone in managing this disease aren't we?

I've considered everything in fighting these lows. Is the pump dosing incorrectly? Is Maddison's pump site hitting a muscle? Is it the arm sites vs the butt sites? Is Maddison throwing away her food? Is she running wild at recess? Is the school nurse counting her carbs wrong? Am I programming something wrong in her pump? Sensitivity? Basal? Bolus? Weather? Growth spurt? Puberty? Stress? Illness? Depression? Am I being too slow in making changes? Am I missing something? What in the HELL IS HAPPENING!!?? CGM is on its way, again. I dont want to force Maddison into wearing another damn machine. But now I have no choice.

Sunday, November 1, 2009

Boo to Diabetes

Saturday was a a very busy fun filled day! PERFECT weather for the JDRF walk. We had a good turn out this year and raised a decent amount of money towards a cure :) JDRF walk on Halloween? Thats one busy day! Our team Tshirts this year are AWESOME!!

After the walk we headed home for naps before Trick or Treating. Halloween on our cul-de-sac is tradition of sorts, all families gather for food, pictures and a costume parade followed of course by trick or treat till you drop.

My Hannah had club volleyball tryouts today. Hannah is officially #3 once again and back in the game! My girl made the 13's NATIONAL team!! This is a HUGE step and I can't WAIT to see our team grow together this year. First practice is tomorrow.....back to the Volleyball life we go!