Party Party

We survived Maddison's "friend" birthday party yesterday! I tend to be a bit stressed when we have so many kids over to swim. Add Diabetes for Maddison AND Miss Addy who also came to our party, and I get a bit over protective. Those lows can get you quick when swimming! The blood sugars co-operated and the kids all had fun. CRAZY with that many kids in the pool though! I'm just happy we didn't have lows and all the kids of various ages played well together.


Maddison went to a friends birthday party immediately before her own! Pizza, cake.....home to swim, more cake.....UGH. I survived. Blood sugars were crazy of course....but what do you do. Start over again on Monday and hope back to school falls in place I guess. Today I'm home with Ms Hannah.....she has Maddison's strep I'm sure...but, of course I have to take her in this morning to get a script. Why couldn't they just give preventive antibiotics for the whole family when I had Maddison in last week? -Sigh- Now I guess we just exposed the whole damn birthday party. Sorry guys!! I swear I did bleach bomb the house after Maddison's positive strep! The real bummer is that Hannah starts Volleyball practice for the school team today! Did I already mention my Hannah made the school team? Of course she did! First game is on the 16th....I cant wait to see my girl back in the game!

Well, I'm back on that treadmill again, feeling motivated and back in to the routine already. THANK GOODNESS. Maybe I wont have to buy bigger jeans this winter after all! I'm testing alot to see how my numbers are going, I dont think I've seen a number over 120 since last week. Lots of lows even with a temp basal of 50% for 6 hours after the workouts. ICK. Of course, then I have to eat eat eat because of the lows.....that cant help with loosing these extra pounds! ACK! I'm telling you though...I have a weird undiscovered type of Diabetes. Or, I suppose I could still be "honeymooning" even after 3 years. Who knows.

What about ME?

******NOTE TO SELF************************** I need to seriously STOP and THINK about what I'm doing lately. Or what I'm not doing I should say. Tonight I'm doing just that. I've STOPPED. I'm looking at my meter, at myself.....and I'm very unhappy with what I see. I'm not taking care of myself. Sure, my meter average is still at 145....but the truth is, I'm only checking my blood sugar 3-6 times a day. So how accurate is that average when I used to check more often? WHY have I been avoiding finger pokes? WHY have I been avoiding anything to do with helping myself feel better? Where has a little bit of effort gone? What happened to the miles I used to run each day? With a little bit of effort I could feel like a new person....or should I say, I could feel like the old me.

I dont mean to pace blame. But, the truth is, Maddison's Diabetes leaves me totally drained and tired. Exhausted. The night time checks over these past 3 years have left my sleep stages all whacked out. I dont think I ever really get to sleep before I have to wake up yet again. No wonder my thyroid is off again, on again! When I was diagnosed with this monster I was still running 3-5 miles a day as I had done for years. A routine. A great morning routine! I felt wonderful back then, even despite the couple of hard months I had when Diabetes started to invade me. Once I started insulin and gained back lost muscle and energy, I was in the best shape ever. I had never taken such good care of ME. Being newly diagnosed I was all about taking care of ME and defeating Diabetes. Then, 9 months later Maddison was diagnosed. ME never came back. I tried many times, I would get back on track, and then Diabetes would win. Or should I say, depression from Maddison's Diabetes would win. SLEEP was more important than waking up for ME time.

Nearly 3 years later and I'm STILL not back into a workout routine, which for me, is the cause of all this evil. If I don't exercise I don't care what I eat. And let me tell you, I eat anything. When I do exercise, I put in 150% effort to eat right. Everything falls into place. Once again, here I am...wondering what happened to caring for ME. What happened to the diligence I once had? What happened to CARING about my eating, my health and my blood sugars? My Endo gave me the okay to come in every 6 months instead of every 3 months and this is what I do? OMG...she's gonna freak. I can hear her already. She's gonna make sure I know I gained these extra pounds....she's gonna make sure I know any A1c over 6.0 is unacceptable. Yet, I don't care.....but with just A LITTLE effort, I COULD be where I used to be. The effort, and the interest in caring for MYSELF just hasn't been there. Or maybe, I'm just too tired. Maybe my thyroid is freaking out again?

WHY? Why does this happen? Today I came to the point where I just couldn't stand my lack of efforts anymore. I know, I've said this many times in the months past. I started back into my ME routine only to fail and choose sleep over exercise once again. UGH. I'm really tired of feeling gross, lazy and tired. So, tomorrow is the day. The kids have early release from school which means I stay home from work. As soon as I send them off to school my lazy butt is back on that treadmill. I have too. I need to take care of ME. No more sleeping every chance I get. Anyone want to help me stay accountable? If I could just get out of bed every morning at 5am to exercise I'd be good to go. But, that's easier said than done. I'm still choosing to sleep until 6am which means no exercise for me. TOMORROW I WILL be getting back to ME. I WILL I WILL I WILL I WILL I HAVE TO I HAVE TO I HAVE TO I WILL!!

I know how great I feel after exercising. I know how I make much better food decisions when I work out. So why is it so damn hard to just do it? One little step in the right direction is all I need. Ok, maybe a PUSH. I think I will start having Josh call me every morning to nag me out of bed at 5am. Its hard to get back to sleep when you are irritated :) ME ME ME ME...poor ME has been neglected. I go in to see my Endo next week.....maybe a big fat HORRIBLE A1c is what I need to see to get motivated? Probably not. My A1c this time around is surely going to be reflective of NO EFFORT. I should be ashamed of myself! Oh well....my promise tonight is that I will be making a come back. Look ahead, not back....look ahead not back.......

TRYING to make our walk video

I've been totally unmotivated to start our walk video this year. I had a sudden urge, and decided to go with it. Maddison wants to be interviewed for this years video, but unfortunately, you could totally tell her blood sugar was high. She couldn't say the things she was trying to say, she couldn't find her words. I recorded the video clips anyway and just listened to what she had to say. Maddison said some very funny things that made me chuckle. Its very interesting to hear her point of view....

"I know that Diabetes can cause bad things, like Charcots foot that my Grandpa has, but that won't happen to me.....my mom takes good care of me."

"Diabetes isnt like everyone thinks. It isn't so bad. Sometimes it is. But not usually."

"Low blood sugar makes me feel like I'm floating on a cloud"

"High blood sugar makes me think slow and makes my muscles hurt. I get tired and thirsty, then my head hurts. I just want to lay in my moms dark room watching animal planet"

"Diabetes is an autoimmune disease that killed my pancreas. It doesn't make insulin anymore like normal peoples pancreas. I dont think my liver works right either."

"People with Diabetes can still do everything that other people do. We are still the same, but sometimes everything is harder with Diabetes"

"Diabetes isn't so bad. I'm still me and I'm still happy alot"

I was hoping Maddison would talk about all the Diabetes sad stuff during her interview....you know, how sad she must feel some days. The sad side is what brings in the money for our fundraising walk! Maddison didn't have anything but GOOD things to say about Diabetes tonight.....what a great thing to hear.

Strep throat/School week 3

We didn't even make it 3 weeks into school before Maddison got the germies! Although we have been diligent hand washers the second arriving home from the school germ fest each day, Maddison contracted Strep throat. WEIRD. WEIRD WEIRD. Let me tell you why. Everytime Maddison runs crazy high with ketones and a severe sore throat I'm certain she has Strep. We take her in, get the rapid test done and its negative. Every single time! WEIRD!!

Sunday (on her birthday) Maddison started with what sounded like the average head cold. Stuffiness, cough. Sore throat and a headache. Classic. Blood sugars have been low. No fever. Some ear pain. Just ride it out right? We aren't quick to jump to the Pediatrician, especially with sore throats and all the negative strep screenings! I kept Maddison home from school yesterday because it was obvious this cold was giving her a terrible headache. She ended up being fine all day with a little tylenol, lots of water and some TLC. She played with her birds, on the computer, played vet, happy as can be. True, Maddison is quite pain tolerant. She did complain of a slight sore throat and a headache all day, but I never would have actually thought she needed a strep test (even though she was exposed last week) because she was seemingly fine. Its not like she was laying in bed or anything! This morning Maddison woke up icky again, so I was stuck thinking of the WEIRD pattern she has with strep. Made an appointment, and Josh took her in just in case. Blood sugars still fine. No fever. STREP POSITIVE. WEIRD!

I'm 223. At work. Can't think straight. 223 is very high for me. Doesn't happen often for no reason unless I ate the unpredictable. I feel weak, I thought I was low. My pump is bleeping LOW RESEVIOR. I'm grumpy and dizzy. I just want to go home. I can't. Gotta be at work. YUCK. Watch out, the school germs are back!

The Birthday Birdies

Words just aren't enough to express how ELATED Maddison was to be given her birthday surprise......The birthday Aviary. Not just an Aviary for the Quail that were needing a new larger cage, but an aviary complete with new feathered friends. Maddison has always wanted MORE pet birds other than the very special "Birdy" the Cockatiel that she got a couple years ago. "Birdy" is Maddison's buddy. She lives in Maddison's bedroom in her big birdy cage and comes out to play with Maddison for hours every day. "Birdy" is what started all this birdy chaos. I tend to be a clean freak and I really dont want anymore birds INSIDE my house. So, the birthday Aviary was a perfect surprise for my bird lover. Seeing the Aviary for the first time, Maddison was so happy, even thinking it was just for her baby quails......when she came closer and saw the new feathered friends inside, she just about jumped to the moon! PURE JOY.

Meet the new birthday birdies.......

Two Cockatiels, three parakeets and a pair of LOVE BIRDS. The Love birds were a gift from my mom to Maddison today......aren't they precious? The Cockatiels and Parakeets aren't tame or friendly yet, but Maddison's working on it. The Love birds however, are just about 3months old and LOVE LOVE LOVE people. HAPPY BIRTHDAY MY PRECIOUS MADDISON!! What a fabulous day today!

My Baby is 9

Tomorrow my baby Maddison is turning 9. NINE!! What happened to the little baby she used to be? The little girl that giggled and wanted to play hide and seek all day? Well, she's growing up too fast. This mom is having serious baby issues these days. I miss my babies. I miss my toddlers. I miss it all, every day I think about the days when I was "Mommy" and realize I'm suddenly just "Mom" now. I feel empty these days, like something is missing. That something is my babies, my little girls toddling along beside me. Ever since my Niece was born last year, my nagging mommy feelings returned stronger than before. I think if I didn't have genetic Diabetes, I'd be planning another pregnancy right about now. I'm crazy, I know. I THOUGHT I was done having children, but that was so many years ago.

37 Part II

After work today I just couldnt wait for Maddison to come home! I needed a BIG hug, I needed to see her for myself. 37 37 37 is all I could think at work. I didnt get much done, needless to say. I just wanted to have Maddison home with me, home where I can deal with Diabetes myself and not wonder every second whats happening next while Maddison is away from me. Damn lows. They really get in my mind. I cant help but wonder all the "what ifs"

I expected the nurse to call me after school with details of WHY Maddison was sent to her office alone when she said she felt low. No phone call. I'm sure the nurse talked with the teacher and left it at that. It turns out, in speaking with Maddison tonight she says she was actually in Art class when she complained of feeling low, and YES, a "buddy" accompanied her to the nurse, but the little girl turned and left as soon as they approached the nurses office. That makes me feel SOMEWHAT better....but the "what ifs" are still nagging at me. In regular class, the nurse is to come to Maddison if she feels low. I guess the Art teacher needs to be clued in on this too!!!

The truth is, the area in which Maddison is in during school hours is probably around the size of a very large house. All the specials classes are close, and Maddison's regular classroom is just a few halls from the nurses office. The nurse can be at Maddison's class to test for a low in seconds. (assuming she isnt busy) Maddison also has a meter at her desk with glucose tabs. Of course, she doesnt carry them WITH her to specials class. I'm thinking as of tomorrow thats all changing.

Starting school, I told Maddison to pop a glucose tab while the teacher calls the nurse if she feels low. So far, she has been 79 and 78...not lows....YET. But they would have been. Why Maddison didnt take a tab those two times while she waited for the nurse to get there is beyond me. Today's 37 comes after those two "almost lows" on Tues and Wednesday. Of course, today everything was adjusted to avoid those impending lows, to no avail. That leaves me with taking DRASTIC measures tomorrow, which will probably cause a high. Better a high than a 37 at school! I need to rethink our testing plan.

Maddison has the meter there in class. She has the tabs. She knows what number equals a low. When I have previously mentioned to our nurse that I felt Maddison should take a tab and test in the classroom for a low, the nurse wasn't so comfortable. Trust me. I understand why. Too many variables. How much insulin is active? Is Maddison dropping fast? Did she not drop yet but is about to? Does Maddison really need to even think about all that at the age of 9? Is she steady at 90 after breakfast? Of course Maddison should treat an obvious low.....sometimes its just not that easy. I'm wondering if I'm sheltering her from having to do this herself........Logically being that the nurse is so close to Maddison at all times, it should be an easy hop, skip and jump for the nurse to check a low. Why do I make it so difficult?

Then there is the side of me that wants Maddison to have privacy testing. I know what its like to be low and feel like everyone around you is staring at you while you sit jittery, pale and sweaty slurping down juice or gnawing on glucose tabs. You feel alienated. At your weakest moment, you feel like everyone thinks you are a crazy weirdo. At least I do. Its uncomfortable. Of course some lows aren't even the feel bad ones, you treat the low in an instant and move on. But those lingering lows......you just want some TIME to recover without feeling like a freak show. I never, ever want Maddison to feel like everyone is watching her. PRIVACY is a good thing in my mind. Maybe I'm wrong. Being that I was diagnosed as an adult, maybe Maddison just doesn't know any different and doesn't notice those things. I just don't know.

37 37 37....tomorrow will be a better day, with a better plan for Diabetes at school. I just haven't decided what the plan will be. The meter is there, the tabs are there......I just don't know.

37

I'm at work and the schools phone number pops up on my cell phone. Thats never good. Anxiously already, I answer the phone, hoping the nurse is reporting an unusual high. If our nurse calls to report a low blood sugar I know its a bad one.

Nurse: Hi, I wanted to talk to you about a low Maddison just had this morning.

IN COMES MY HEART PALPITATIONS, FASTER, FASTER...

Me: OK...

Nurse: Maddison was 37 at 9:28 today, she said she felt confused but didnt really feel low at all.

The good news, Maddison came up easily to 121 after 3 glucose tabs followed by 2 PB crackers. The bad new is, it seems every damn year Maddison's teacher has to learn the hard way how SERIOUS lows can be! Because it was close to Maddison's regular testing time at 9:30am, the teacher sent Maddison alone to the nurse. While she was confused. I'm angry. My heart is broken. Our poor babies.

The nurse assures me she will talk to the teacher. I'm sure she didnt realize Maddison felt low, but if it were ME, I would have seen the paleness in her face. The silliness, the slow response time, the unstable walk. In comes the guilt. I adjusted Maddison's ratio for breakfast today....the last 2 days she has come in a bit too low at 79. The nurse gives 2 carbs for those and she ends up fine, but then strangely in the 180-260 range for lunch. DAMN BASAL RATES. Do I look like a rocket scientist? I'm trying to do my best here, only for Diabetes to land me flat on my back as Meri expressed yesterday. She couldnt have said it any better. I'm with ya today Meri. -Sigh-

So here I sit at work. Feeling entirely alone. Helpless. Scared. Guilty. Angry. Sad. Numb in some ways....strange. I think I've lost my concentration for the day. Distracted. My heart palpitations caused me to feel low. I'm not. Now all I see are 37's dancing around in my brain when I should be working. It wouldnt be so hard if the 37 was home with me, but a bad low at school just kills me inside. ((Special HUGS to all our T1 kids today))

Week 2

On this Tuesday I'm happy to say that school is still going great for the girls. Tomorrow Hannah has a volleyball meeting before tryouts on Friday morning. Exciting! Maddison is still happy in class, she is delighted to tell me how they are learning about rocks and minerals each day. Blood sugars have fallen into place, looking VERY good, surprisingly. This year I knew what to expect after last years chaos returning to school, which made adjustements happen much quicker this year. No waiting around for 3 days of a pattern.....checked the old log books instead!

Ive been feeling icky lately. It seems I always get the lingering illness everyone else has had weeks prior. Weird. My blood sugars are good (except I cant stop eating CRAP all day) but my throat is sore and my ears hurt. ICK. I just woke from a 2 hour nap! Josh is home from work today and picked up the girls from school. All I remember is napping away when Maddison came in and curled up in bed with me after school. She sure was lovable today, she isnt usually so cuddly. That just made my day! We've been working on getting her outdoor aviary all ready to go for her birthday on Sunday....I'm sure she knows what it is, she isnt allowed to go out into the back yard right now and ruin the surprise.....she keeps hugging me all day trying to work the Maddison magic. She wants me to give in and let her have her gift early :)

With school back in schedule, I'm REALLY trying to get back into my workout routine. So far, its a no go. I only have between 5am-630am to devote each day before getting the girls prepared for school then leaving for work....sleep continues to win. -sigh-I'm sure if I didnt wake up so often for blood sugar checks I'd be well rested each morning and ready to roll out of bed to my treadmill like I used to be....maybe some day. 5 days until my baby turns 9!!!

Happiness

We survived the first week of school! In fact, Maddison thrived. She started every morning happy as can be, eager to be on her way. She came home from school smiling and ready to share details of her day. HAPPINESS. Thats all that matters right now, starting the year off on a good note instead of craziness and sadness as EVERY year past! YAY for Maddison's new found happiness in school! And YAY for new friends!Here's the girls on the first day of school......
Maddison will be turning 9 in just ONE week! I can't believe it! I really wanted to do something special for Maddison's birthday this year. I keep thinking how she isnt really a "little" girl anymore, and how FAST the next years will go. Seems once your kids get a bit older the next few years FLY by! Can't I just keep my kids as they are?? I'm totally having mommy meltdowns! I miss the babies and toddlers in my life!

So what would be really special for Maddison? Well, being that Maddison has been so good with being more responsible(doing homework without me asking, remembering school papers, cleaning her room, doing her chores, taking care of her pets)I figured I would give her even MORE responsibility. Responsibility that she's been asking for for a long time.....this years gift to Maddison for her birthday......an outdoor aviary!!! ((Yes Wendy....MORE animals for you to visit at our zoo!!) I'm so excited I can hardly keep the secret another week!

Since we are SO fortunate to have Ms Jodi in our lives (from the bird rescue where Maddison volunteers)I decided to give her a call last night to see her thoughts on setting up Maddison with her very own aviary. JODI was excited for Maddison! I told Jodi what Maddison would like best.....taking in the birds that aren't able to be released after being rehabilitated. Sooooooo.....Ms Jodi is working on a few things and will be calling me shortly! We are going to work on this VERY SPECIAL gift for Maddison together!! PURE HAPPINESS!!!!

In Diabetes land, Maddison did much better with numbers yesterday, EXCEPT the dang trail mix the kids made in the end of the day. 389 afterwards, how was the nurse supposed to accurately count carbs in a trail mix with mixed cereal pieces, M&M's, chocolate chips, crackers and such? Sheesh. Thats a hard one! I was able to find my logs from last year when Maddison started school....looks like the back to school pattern is quite similar this year. I upped basals and changed the breakfast ratio a tad based on last years morning basal changes. So far, much better. We are getting there! Now to see how this weekend goes, I'm sure I'll be working on a weekend pattern too!

Off to do some aviary planning! I should be doing laundry and chores. No happiness in THAT! Must plan some HAPPINESS :)

Fasting BS

Hannah's fasting blood sugar result.....120

I would feel much better with a 100 or 200. That would be a yes or no. A 120? A 120 means....nothing...I guess.....for now......but it means alot to ME.

Damn insurance/School day 3

Early this morning I set out to a Medicare DME workshop that my employer suggested I attend. Over 150 local and out of state DME providers showed up, small companies like the one I manage, all the way up to the big wigs like Apria and Gentiva. These workshops are supposed to help decrease claim denials and increase your knowledge on reimbursement. What really seems to happen at these workshops for ME however, is I walk away feeling more overwhelmed and depressed about health care today. Or should I say, insurance companies today.

Of course, alot of the DME talk was about supplier reimbursement for Diabetic supplies. Being that I currently manage billing for respiratory and CPAP supplies, I'm not really aware of Medicare's reimbursement guidelines for Diabetic supplies. The things I learned today in regards to this reimbursement just made me-------SICK. There were many times I wanted to leap from my seat and start the whole "real" look into Diabetes talk. I just wanted these people to know! Anyone listening?!! Not that these people knowing the "real" world of Diabetes would change anything, but in my mind I would have felt better if I told them why more than 1-3 test strips a day should be allowed! Yes, today I learned that Medicare only reimburses for 1 test strip per day for non-insulin dependant Diabetics!!!!!!!!!!!!!!!!!!!!!!!!! They are far more generous for Type 1's.....they reimburse for a max of 3 test strips per day. T-H-R-E-E 3...3.....3.....3......3........3.......WHAT?

GAG me. WTF? OMG! I was practically gasping for air listening to the conversations around me. Most attendees it seemed were having issues with reimbursement for Diabetic supplies. Imagine that. After the 9 hours of grueling insight, I'm home with a killer headache. I'm sure my blood pressure must be through the roof. -Sigh- I know healthcare today is joke. I've been working with medical claims my entire life, but somehow hearing all these reimbursement guidelines in a 9 hour convention was just too much for me today. I could go on all day....but I won't.

School day 3 today was great for Maddison! She met a few new friends(which doesn't come easily for her) and was happy as can be when I arrived home. Maddison's blood sugars however, are definitely in the full back to school schedule. Time to get aggressive and figure out the new morning basals! Last night I adjusted basals from
7am to noon, which upped her about 200% in the morning hours. Nothing budged today. In fact, a bit higher by lunchtime.

7:00am 113 Breakfast
7:50am 89 (1 hr PP!!!!) Going into class, no xtra carbs given this time!
9:30am 164
10am 190 (3hr PP)
11am 289 (.8 correction w/lunch bolus)
1pm 248 (felt low)
1:50pm 256 (before recess, almost 3hrs PP)
3:16pm 194 (after school)

I dont know what to do. Today I just cant figure it out. An obvious basal issue....but also....what about the .8 correction that did nothing? Is that just because the basal isnt right or is that because a sensitivity needs to change at
11am? I would normally wait 2 days to make any changes....maybe I will. Sometimes it takes a few days to see adjustments make an impact. Why is that if we use a fast acting insulin as our basal? Something to do with metabolism? I just dont have the answer tonight. I'm sure it will come to me in the wee hours of the morning, and then I wont be able to get back to sleep. Ahhhhhh......gotta love back to school!

School day 2, the wonder that drives me bonkers

Open mouth, insert foot. Yep, isnt that how it goes in Diabetes land? Last night Maddison needed a correction before bed. She was good three hours after but just 78 waking up this morning, WITH a headache, stomach ache and sore throat. Lovely. Maybe the strep throat isnt done in our house afterall. Swimming caught up with her Maddison from yesterday I suppose. 78 isnt a typical wake up number lately. Dont you love how I always think I have the answer? It makes me feel better! Anyway, just 1 hour after breakfast Maddison was 132 going into class. CRAP. No pre-bolus was given. At 1hr PP she has 2.3u active at 132? The mom in me WORRIED she would go low like Sunday. So, I gave her 8c and sent her on her way. Sitting at work I wonder.

I check my cell phone repeatedly, no call from the nurse. Maybe my phone isn't working? I keep my email open at work.....no email from the nurse either. Of course I KNOW in my mind that the nurse will call if Maddison is low or too high.....it doesnt matter. I still WONDER. Right there in the FRONT of my mind with each passing minute. I think of Maddison every few minutes at work, and wonder what her blood sugar has done today. Did I screw her all up by giving her those 8c this morning in a last minute fear of lows? Is she too high now? Could I be lucky enough to have done the right thing in that split second decision?

Its lunchtime, I PROMISED myself to not call the nurse or email her asking about Maddison's numbers. Really. I have to stop. I know she's fine! Honeslty, I'm surprised I didnt break down and just call anyway! I just like to know so I can continue my day without wondering. Up pops an email from the nurse. Out of test strips? Um...nope, there is an extra 100 in Maddison's drawer....BUT, I'm SO glad YOU emailed ME!! An excuse to see the numbers! I sure did screw up the day! This is what the nurse reported.....(I didnt even have to ask, LOL)

930am 216 which is 3hrs PP
1105am 275 which is over 4hrs post prandial

ACK! I guess Maddison didnt need that 8c I gave in a panic to avoid what I THOUGHT would be a low after breakfast. Looks like basals are starting to be a bit off too getting back into an earlier routine. And so, this is how it goes in Diabetes land. For anyone without Diabetes who reads my blog, welcome to our world.

1st day of school! AMAZING!!

Last night Maddison fell asleep at a decent time of 9pm. Unusual for her! Hannah however, went to bed around 8pm then woke up as I was going to bed at 11. She tossed and turned. Around 1am she says she finally fell asleep. I tried to tell her those summer hours would haunt her......

Maddison was a bit high over night, not sure why, but she was good by waking time. She insisted on the tummy site for last nights site change. All I could think was that tummy site would cause us lows this morning with back to school chaos...but I'm happy to report only GOOD things! Maddison woke up HAPPY to go to school. HAPPY! Thats huge for Maddison my school hater :)

Maddison didnt want to finish her milk with breakfast, so I substituted PB pretzels instead. She spiked from the pretzels of course...when I dropped her off at school she was 271. I hung around with the school nurse today helping her with some paperwork she needed done. Of course, the reason for my being so helpful was the FEAR of yesterdays lows. If Maddison was going to have a repeat of yesterday morning I wanted to correct it myself. I know, I need to let go.

At Maddison's first 9am check she was 198 (2hrs PP) then by PE she was 129 (3hrs PP zero active) I couldnt BELIEVE IT! At 11:15am for lunch she was 99.
99!!!!!!!!!!!!!!!!!!!!!!! AMAZING!!! At 2:15 before recess Maddison was 159 with zero active....she came home at 3:3opm and was 129!!!!!!!!!!!1 AMAZING!

Total relief. I know this is only day one of school, but at least now I'm optimistic and not fearful for tomorrow. THANK YOU THANK YOU THANK YOU Jesus for an amazing back to school day! I so appreciate it!

Terrible timing

Last night and into this morning, Maddison didn't budge more than 10pts from 11pm to 9am, what an awesome thing to see :) Something is right somewhere! (at least for ONE night!) Unfortunately, all good things must come to an end. Terrible timing.....a horrible morning of persistant lows after breakfast....THE DAY BEFORE SCHOOL STARTS!!!! ACK!!

What does this mean for tomorrow!!??? I can't decide what to do!! I've already decreased Maddison's AM basals down to amazingly low amounts earlier this week. It seems the new tummy sites Maddison has chosen (thanks to Dr D encouraging her to try new places) are highly effective in absorbing that insulin! Should I have Maddison switch to the "normal" site place in order to avoid lows tomorrow so we can play it safe? Tonight IS site change night anyway.....

Maddison had a typical breakfast this morning at 9am. Its like Diabetes never woke up today......

10:41am BS=50 with 1.2u active...give 20c juice
11:00am BS=65 gave 8c juice with 6c glucose tabs and 17c granola bar
11:15am BS=57 gave glucose gel, glucose tabs and 25c dry sugary cereal
11:30am BS=130 .9 active bolused half the carbs for the cereal
Noon (sure she would be sky high) BS back down to 99
Gave 15c uncovered PB pretzels
1:45pm BS 98

ACK!!?? So, I guess I reduce basals again for tomorrow? I dont see WHY this is happening THE DAY BEFORE SCHOOL STARTS!!! Maddison's morning basal is now the lowest-EVER!! Terrible timing! Looks like I WILL be stressed out for school tomorrow afterall. What terrible timing!PLEASE PLEASE PLEASE Diabetes!!! Give my Maddison a break!

Forgot to mention

I guess I forgot to mention in my last post that Maddison IS going to have her sugars checked more often than once a day at school. Silly me, I didnt actually mention the fact that ***I***scheduled Maddison to check at 9am (2.5hrs after breakfast) again before lunch (2 hrs later) and before afternoon recess which is 3hours post lunch. I think this will work just fine. The nurse still says the 9am check will be "just for the first month" but she isn't in charge of deciding that, I am :) It still irritates me that the school originally only planned that one lunch time check, but if ya'll know me, you know there is no way I would let that slide!

I've had lots of emails from people being concerned asking WHY IN THE WORLD would the school only check Maddison's sugar once a day. I assure you this would never actually happen, my last post didnt clarify that I INDEED changed that. Silly me! And yes, Maddison does have a 504/IEP. Every child with Diabetes must if you ask me! The nurse will come to Maddison for times that she feels low or high, I'm wondering if I should just ask if she can come at all the scheduled times?

Tonight I'm NERVOUS with thoughts of Monday morning invading my mind. I CANT BELIEVE SCHOOL STARTS ON MONDAY!!! AHHHHHHHH!!!!! I'm optimistic for a great year. I wish I was just as optimistic about blood sugars at school! Maddison has been hoovering in the 70-120 range alot lately. I thought maybe she was getting the strep throat that Josh came home from vacation with....seems Maddie always has lows before an illness followed by highs during and after. We havent even been subjected to the school germs yet......

The bus ride....I hate the fact that school starts in August in Phoenix when the days are still in the 110 range! Maddison is in school an hour longer this year, which means she will be riding the bus home with Hannah....in the 110 degree heat. With insulin pump attached. Heated insulin, you dont know it until the high hits. That irritates me.

Oh! Guess what!!! I forgot to mention the GREAT thing we learned on Friday at Meet the Teacher Night......In Maddison's class this year is "Riley" a boy who's brother was diagnosed about a year after Maddison. So, "Riley" knows all about Diabetes! His brother is in 5th grade this year, but its great to know that his brother is in Maddison's class, someone who understands!! I talked with his mom on Friday who I met earlier this year on a field trip, and she says "Riley" is always watching out for his brother :) He is always asking him if he needs to check his sugar when he behaves strangely and asking him if he needs to check his ketones when he's high. GREAT! Someone to watch out for Maddison!! Funny thing.....Rileys dad was diagnosed at age 10, then his son at age 9. Father/son just like mother/daughter. We feel close to this family just for that reason. A great school year ahead, good riddance to last year and that CRAZY USELESS teacher!

Mrs M

Today Maddison and I took in all her "D" supplies to the nurse's office. For those unfamiliar with what we need at school, here are a few of the necessities....

Meter
Strips
Alchol swabs
Syringes
Insulin
Insulin pump book
Glucose tabs
Juice
Tylenol (Maddison has frequent headaches at school)
Rolaids (yep, frequent tummy aches too)
mini water bottles
test control solution for the meter
snacks
carb free snacks
ketone strips
Glucagon

Did I forget anything?

After a quick update with the nurse for our care plan this year, we were off to speak with Maddison's new teacher Mrs. M. Mrs M is an older, very soft spoken and kind lady. Hannah loved her when she had her back in 3rd grade. I think Mrs M is everything Maddison needs to succeed this year and build confidence in the classroom. What a relief!

Then comes the Diabetes talk with the teacher. UGH. I hate having to go over the Diabetes talk. There is so much as parents we want to say. We want teachers to know how our kids should be treated perfectly normal, but at the same time we stress the importance of vigilance in the care routine. We stress the urgency of testing when a low blood sugar is suspected, and the importance of recognizing potential highs. We talk about cognitive function being impaired from highs or lows, illness that isn't simple anymore, and we educate on how Diabetes is always changing. How is that normal to a teacher who has never had to handle all this? The "talk" is a very challenging thing to get right. You want to educate without sounding like the Diabetes police, but you also want the disease to be taken seriously without stressing the teacher out. I wish I knew just the right things to say. I usually end up saying too much.

Even though I feel that Mrs M is very capable and on top of Maddison's needs in the classroom, it is then that hearing myself talk all this talk makes ME feel overwhelmed. I'm used to just doing it, not training someone on how it all needs to be done. When you start to explain Diabetes you again realize how very complicated it really is.

I was surprised to find that our nurse didnt have Maddison down to test until lunchtime, at 11:10a. Thats a problem. If Maddison has breakfast at 6:30am every morning, waiting until that time to check her blood sugar is nearly 5 hours after eating! What is our silly nurse thinking? I guess she thinks if Maddison comes in high for lunch I just start to make a few changes to insulin doses......but where?
9am? 10am? A ratio? Its just not that easy. And....ummmmm.......what if Maddison is high for those 5 hours until lunch? Um.....no, thats not gonna work. The chances of being in range is about 50/50. It was then that I started to stress. Its hard to decide when to test at school! I would LOVE LOVE LOVE to be able to say Maddison can wait until lunch to be tested. Afterall, I dont want her missing valued class time, and we all know if breakfast doesn't turn out right then the rest of the day is typically the same. You cant go into lunch being high from breakfast! So, the nurse agreed to a 9am check ((FOR THE FIRST MONTH) ACK! Does she really think a month is all it takes? A month is all I need to get everything under control? And its going to stay that way? Where is the instructions for this pancreas? I must have been missing them all these years!

Lunch at 11:10.....our nurse had no mention of Maddison needing to return for a blood sugar check anywhere the remaining school day (??????) I guess we wait until she gets home at 3:30pm? Ummmmmm........What? Is this the same nurse that I drove bonkers last year with emails and phone calls? Suddenly Maddison is older and in 3rd grade so Diabetes is behaving? Ideally Maddison is checked 2.5 hours after eating, unless things have been going "predictably" which, isnt often. Dont kids NEED to be checked this often at school to assure they are at their learning potential without highs and lows? Now I'm stressed and my mind starts remembering how difficult back to school is with Diabetes. I'm not sure what will work out best for Maddison. As always, we experiment and adjust accordingly. I hate that part of Diabetes! Just 3 more days!

Vacation pictures

So here they are....pictures from vacation. **Warning** ALOT of pictures! I couldn't decide on the best ones! I must say, Hannah is a great photographer, unfortunately that means she isn't willing to be IN many of the pictures! We really did have a very nice and relaxing time, although all my vacation updates sounded otherwise. Tomorrow we meet with Maddison's new teacher for this year, Mrs M......wish us luck. Only 4 days until summer vacation is OVER!!! I miss my girls already!

It Means nothing

Soooooo...the dreaded Endo appointment for Maddie today. First, let me say this... I dont trust the A1c's and certainly not the finger poke version! Maddison's last A1c in April was 7.3% and I was devastated. I felt that we had been doing extraordinarily well, within target 80% of the time according to meter readings in those last 6 weeks before having it tested. I was convinced that A1c was going to reflect a 6 range. Don't get me wrong, 7.3% was still good, but I was sure that it would come back lower. I was shocked it was "so high" and it was devastating because I ended up not trusting those dang A1c's at all! These last few A1c's have meant NOTHING to me. I just dont trust them. They never reflect what we actually think they should be!

In January Maddison's A1c was 6.9% and I was surprised. I thought it would be MUCH higher. Her numbers seemed terrible so often. So? Whats the deal? The A1c never comes back how I expect it too. Todays A1c was 7.2%......I was expecting at least a 7.5% since summer Chaos and bad sites have been common. But of course, this last week of vacation Maddison has had many, many lows. Which is why I think her A1c is actually much higher. What good is the A1c if this last week has reflected highly on the result? Has it? Who the heck knows!

Stupid A1c test. I dont like you. There has to be a better way. I'll take this 7.2 lightly. I know Maddison has been randomly high too often. Way too often this summer. This A1c really means nothing to me today. Nothing. I guess thats a good thing. I know I'm doing my absolute best to manage, thats all that matters.

I also talked to Dr D about a new family HLA abnormality that tends to be genetic, so Dr D had a slew of lab work ordered for Maddison. The higher panel Celiac, HLA genetic testing, yearly labs....all kinds of stuff. I tried to convince Maddison to get her labs drawn as we were leaving, but she resisted and wants to use EMLA. I dont want her to be dependant on that stuff. I want her to tough it out. But, who am I to say....she puts up with enough pain already.

Dr D seems to be suggesting the CGM to many patients lately, according to those in our local support group. I think its great that Dr D advocates the CGM for her patients. You wont find that often, especially in a Pediatric Endo practice. Dr D asked me about the CGM today too. My response was to go ahead and try for coverage. But, I have a love/hate impression of it already. I know enough from CWD parents and our support group parents that the learning curve is tremendous. I dont think I could handle it. If I see anymore numbers I think I would lose it. If/when I see spikes after eating, I think I would freak. I like to think I have those controlled.......Maybe if I use myself as a guinea pig first....I dont know. I cant imagine having ANOTHER set of numbers to analyze! I always TRY TRY TRY to fix every number.....could you imagine how seeing CGM data would push me overboard?

But yes, I think we are testing Maddison too much, (10-15 times/day) I would love to be able to cut back. I dont want alarms interrupting Maddison's day, with school approaching she already visits the nurse too much! I just dont know. Last year returning to school Maddison's numbers were too high every morning at school for 2 straight months. I know the CGM could be the answer.......I also just dont want Maddison to look like a little robot with all that mechanical gear. I also think I have gotten much better at being aggressive with those morning numbers when they go wonky.....after the whole 29 low blood sugar at school last year I really backed off of making "drastic" changes, which meant I would wait 3 days to see a result. We all know how 3 days turns to a week, and a week into 2 weeks so quickly. Thats why last year back to school was so tough. I was too cautious. This WILL be a better year! I've come a long way since then!

CGM....I'm not so sure. I keep saying when Maddison's A1c hits 8 or higher I will consider it. Right now all I know is that silly 7.2 means nothing. I'm numb to it. I'm irritated with it, because I just dont trust it. I have the log to show. The CGM has the whole picture I suppose......but is it really necessary? I dont want Maddison to hate Diabetes because the CGM is such a pain. I dont want Maddison to have that needle inserted if not necessary. I dont want to tape up her entire sensor area leaving her skin raw and painful. I dont want Diabetes to be any more visible than it is I guess.

HOME!!

SO HAPPY TO BE HOME. Tomorrow we are off to Maddison's Endo appt......after a weekend of lows from traveling. Do you think we ever really see an accurate A1c? I'm thinking not. Right now all I can think about is my own bed, and the fact that I need a vacation from my "vacation".......

Vacation Day 4

Hannah's fever broke quickly last night after a nice dose of Motrin. Poor girl being sick on vacation. How miserable. At midnight I finally felt I could sleep, and it was time to check Maddison anyway. All it took was lifting Maddison's little hand to know she had a fever too. 103 in fact. My mind raced forward nervous that Maddison's fever would reflect a terrible high blood sugar. 178. Oh boy....here we go. I woke Maddison up for some Motrin as well, and corrected the slightly high number. As always, set the alarm to re-check the high. At 3am Maddison was in the lower 200's, but she wasn't on fire anymore. Thank goodness.

Vacation day 4 today started terribly. Hannah was in tears with a swollen throat, but mostly complained of being too tired. Too tired? Too tired in my mind means a blood sugar check. Hannah cried and cried. She didnt want to miss our last day at Lego land. We all kinda lazed around for awhile. Then Maddison started with a fever again. I bolused her for breakfast when she assured me she was starving. Then she couldnt eat. Stomach pain. Somehow, Maddison ate enough carbs of dry cereal to keep from going low. Hannah forced herself to get dressed, and we were on our way. Then came Hannah's fever again just as we arrived at Legoland. Checking Maddison's sugar before we got out of the car showed 82. With 1.2 active. 15c of skittles, then a snack. Recheck shows a 54. Now Maddison's pale and wants to "go to sleep" saying she's confused and feels like "I'm dying"

ACK. Long story short....before even getting started at Legoland we had to take a break. Somehow today ended up being a GREAT day, despite Maddison's 3 lows before the day was done. Despite Hannah AND Maddison having a fever. Then Dad turned sick. Chills. Fever. Yep, we still ended up having a great day. Thats called lots of determination to just have FUN on vacation! Lots of Gatorade. Lots of Tylenol and Motrin. Tons of water and sunscreen. Pictures to come soon! Tomorrow around noon we will start the long drive home. Thank goodness!

Vacation, and my mind is running wild

Tonight I'm beside Hannah in bed. The hotel room is quiet, and I cant sleep. Just outside our room I can hear the ocean waves. Its such a peaceful and relaxing sound, yet inside my over active mind there are so many feelings at war. My Hannah now has a fever, she's sun burned and feeling yucky. I'm sure she's dehydrated, yet she's drinking water and peeing constantly it seems. After the morning battling Maddison's ketones, this isn't where I expected to be, at least not with Hannah. Everyone knows why I cant sleep.... The Diabetes demons are taking over, even when I'm supposed to be on vacation.

This morning I watched helplessly as Diabetes tried to ruin our day. A "simple" mistake is all I made. The result as noted in my previous post, was the wrath of KETONES for Maddison. There isn't any room for mistakes with Diabetes, yet we make them ever too often. Us parents aren't made to be a perfect pancreas!! Our kids pay the price when we make mistakes with Diabetes,therefore, I dont think I ever forgive myself entirely when I do make those mistakes. I keep wondering when I will.

Something else has been lingering in my mind.....On Thursday we attended a corporate breakfast engagement for JDRF. We were asked go and represent as a JDRF family. I was warned, I must say, that they would play a video of a woman speaking about her complications from Diabetes. I assured the JDRF girls that we would be fine in sitting through the video with Maddison and Hannah, after all, my girls know all to well about Grandpa's complications. What I didnt expect however, was this person to talk about her complications that set in at the age of 11, just 5 years after her diagnosis. She was diagnosed at age 6, just like Maddison.

Severe Neuropathy in her hands and feet. AT AGE 11. Gastroparesis and Retinopathy by age 18. Thats just 12 years after being diagnosed. How? Why? Did she run THAT high for years? Was she consistently in the 300's? 400's? Maybe she just fluctuated from one extreme to another? Isnt that what they now think causes most of the damage to our bodies? What if genetically her body just couldn't with stand the high blood sugars like some others seem to? GENETICALLY predisposed to complications? What if?

What if my Dads complications aren't really from his Diabetes being "out of control"?????? What if I'm genetically pre-disposed to complications? What if my 6.0 A1c means NOTHING because it is still above normal? Where will I be in 10 years? In the same place as my Dad? What about my Maddison who was diagnosed at such a young age? I've sat around and convinced myself that today we are so much better off than Diabetes years ago, and, I know we are.....but hearing these stories makes me want to cry. Most people do their best each and every day to manage their disease, yet there aren't any promises.

The night after watching this girls video I had a nightmare. For the first time EVER, I was worried about myself. Most days I dont even know my Diabetes is there. I get lost in caring for Maddison's Diabetes. I dont have enough in me to worry about two of us. I've always felt confident that because my A1c's have always been under 6.3, that I could never possibly have complications. Now I wonder. What if? Out of nowhere this dream hit me. I was in the same Dialysis clinic I used to take my Dad to, only this time I was the patient, and I was completely alone. I remember feeling alone in my dream, and then I woke up.

I keep thinking about that dream. I can't get that girls video at the JDRF breakfast off my mind. All I could FEEL today seeing Maddison's PURPLE ketone strip, was that I'm failing. So now my mind runs wild. Its nearing midnight. I cant sleep and I'm waiting for the next blood sugar check so I can go to sleep. The hotel room is quiet. I can hear the ocean waves outside the window, yet I dont feel so peaceful. Some days I do, but tonight, even on vacation, I dont. Oh how my mind needs to quit running wild!!

Vacation update

Friday was our travel day to Oceanside, CA. The kids actually did GREAT on the drive, and there is always a ton of laughs when cousin Myah is involved! That girl is too funny. She's a drama queen, and at just 5 years old, Myah has lots of questions. I've forgotten how funny little kids are! Driving up a winding mountain road, Myah was sure we were gonna die. The girls all giggled in the back of van as each had something to say about the crazy winding road. Such silly girls!

Maddison woke up that day in great range, but spiked to 190 with all the excitement. Then Maddie had a 391 two hours after breakfast, ACK. Muffins and sitting for a 5 hour drive just didnt fare well for Maddison. I knew I should have set a temp basal increase! As we made our way to the beach Maddison's numbers improved. Off to dinner after spending some time on the beach....we went to Joe's Crab Shack! What a fun and yummy place! Maddison earned $20 thanks to Auntie Sam who bet her she wouldn't dance with the staff as they sang to YMCA. That was too funny. You should have seen the build your own ice cream sandwich sundae the kids had for dessert! Numbers ran through my head as I tried to calculate the 3 ice cream sandwich halves, sprinkles and hot fudge....oh yeah.....AND M&M's!!! Diabetes....you better behave!! This is a VACATION right?

Maddison ended up at 230 several hours later, which is darn good considering I bolused her for 120c for JUST the ice cream. I'm SO relieved to say that into the following day Maddison stayed between 72-148 even with 5 hours on the beach being disconnected from her pump! Lots of reconnects to bolus missed basals, but, I got it all right and Maddison felt GREAT...HAPPY...ENERGIZED.... ALL DAY!! YAY Diabetes vacation!! I have lots of pictures to come! The kids had the most fun gathering sand crabs and out running the waves. What an awesome relaxing day!

I wish I had only great things to report for today, vacation day 3. Despite the great day of numbers behaving at the beach....somehow Diabetes struck back when I was least expecting. I fell asleep around 10pm last night while laying in bed watching TV with the kids. I must have been THAT comfortable, relaxed and
de-stressed. How dare I. Maddison was never checked before bed. (!!!!!!!!) An hour later I leapt from bed, grabbed the meter......Maddison was 410!!!!!!!!!!!!!!!! OMG!! I was SURE she had gone low and rebounded!! GUILT!! Talk about guilt! Thank goodness Mr liver gives back when needed most right? Well, two hours later Maddison was still 380. Yes I thought, totally a rebound high thats more difficult to bring down. That would make sense right? By next check Maddison was still 280. Lets check ketones. If I cant get blood sugars down by morning I know somethings VERY wrong.

How could I be so stupid!!?? I never checked Maddison's ketones sooner!!! I just assumed she rebounded! Then I realized she had a site change before dinner. AAHHHHHHHH!!!! Its a bad site!!!There it is, purple as can be. High ketones!!!!

Maddison wanted to go with her sister and cousin for the morning walk on the beach, despite feeling pretty crummy. Maddison somehow managed to drink some water and roll out of bed after a site change. Do I replace the last bolus I just gave through the bad site? Did she get ANY of that insulin? How could I have made this mistake yet again!!?? I re-bolused just part of what I gave previously, LARGE KETONES afterall. 30 minutes later everyone returned from the beach walk with Maddison feeling even worse by now. She's 118. JUICE. Too much active, she's crashing after a new site. Can I just kick myself now? This cant happen today! Its Legoland day!! Heart broken. I was totally heart broken at this point. The guilt and sadness I was feeling was enough to make me want to crawl in bed and hide the rest of the day. We were supposed to wake up and be on our way to Legoland!! How dare Diabetes always interfere and make everything so damn difficult!!?? How could I have made this mistake TODAY??!!

Maddison crawled back in bed, listless. Pale, crying with stomach pain. Not just stomach pain. Its the ketone stomach pain. Miserable. I climbed in bed beside Maddison and just stared up at the ceiling as she drifted off to sleep. I was so angry. Angry at myself, as always, the blame goes to ME. **I** am responsible for this. ME. No one else.

Maddison slept for about an hour as I just lay there listening to the ocean waves outside our window, remembering when life was simple. No finger pokes. No bad sites. No common cold causing serious highs and trips to the emergency room. I could hear everyone having breakfast in the kitchen without us. I couldnt get up. I was too worried. I felt horribly guilty. What if I just ruined our whole Legoland day? What if Maddison isnt going to feel better soon? What if its something else, not the site? Where is the nearest hospital?

The good news, after that hour Maddison bounced back. Blood sugar good at 152, no more ketones. Still nauseated, cant eat breakfast. A little more rest and some very silly Sponge Bob on the TV and Maddison was laughing again. Legoland.....here we come! I cant wait to show all our great pictures! We still battled some roller coaster numbers through out the day, but that doesnt matter so much today after what we just went through with Ketones. We had a ton of fun at Legoland today and Maddison felt good!! We stopped by MiMi's Cafe for dinner on the way home, then headed to the Pier to check out the evening sunset and fisherman. A day complete. It was beautiful to watch the sunset and walk the beach until darkness set in. Very relaxing. Today really put life back into perspective, especially after the morning of ketones.

Now its 10pm and Hannah is lying beside me in bed with a 101 fever. Too much sun? I dont know....I just want to make it through this vacation without any further drama. Tomorrow is day 4 of our vacation, I think I'm done already. Ive loved being here this weekend, but home is where my heart is.