Tuesday, December 30, 2008

I should have known

I'm so angry over silly things today. I mean really completely silly things like my shoe is too tight, my sock is all bunched up and my co-workers are laughing out loud. The fax machine is beeping too often and getting on my nerves, my fingers are hitting the wrong keys. This isn't anything to be angry about on normal days, unless my blood sugar is high. I'm not really a tired high person, (unless I hit over 250) I am more of a very irritable and angry high person. As in, my blood is boiling and I need to be ALONE. I am the devil in other words. I should have known sooner that my blood sugar was whacked out. I've been pissed off all morning, about nothing. Nothing that matters, nothing that is anything to fret about.....but ohhhhh my meter that reads 217 mid morning says so. For me 217 is very, very high for this time of day. I "never" see anything over 120 this time of day....ahhhh....but sress is getting to me apparently. It isn't the number 217 that stresses me out, it is the 217feeling that eats me alive. I'm like a raving lunatic! How embarrasing!

When I arrived at work Hannah called to tell me Maddison is refusing to check her blood sugar before breakfast. I checked her in at 137 when I left for work a few hours prior, and I planned on letting them sleep in. But, Maddison would need to be re-checked at some point to make sure she is safe for sleeping in late. Gotta love Xmas vacation. No predictability. So, Hannah was trying to get her to check.....she was whiny and refusing, probably because Hannah was grumpy too and yelled at her. Fabulous. So, knowing Maddison, now she will be difficult and whiny all day. Grandma is there today to supervise a bit....this is exactly why the girls need some type of supervision for long days without a parent home. They just can't get along some days. If we didn't have the Diabetes shit to manage, they would be fine to lay around all day once in awhile. Diabetes is a pain in the ass when an 8yr old is "expected" to follow her management plan. Can't she just have a day off?

Now Hannah calls to say Maddison didn't bolus at all for her cereal as a snack. Fabulous. Cereal is a pre-bolus by about 30 minutes when I am home. I'm sure she is sitting in the high 300's by now. Here comes her devilish attitude to match. Add to that boredom and Maddison will be having some meltdowns shortly I am sure. I can feel my blood boiling again as I wait in anticipation of another phone call from Hannah. Up goes my blood sugar. This looks like a viscous cycle today. Why can't I just be pissed off because of my own bad attitude and blood sugar high at work? Why do I have to have kids at home causing drama and Maddison's entirely separate blood sugar issues to add to my stress? Can't I just be at work people? My mind is actually here and there! I have stress from both places at the same time. I used to enjoy the kids school vacations. I would take some time off from work and I didn't have to rely on anyone to manage Diabetes but myself. Now I sit here at work pissed off because I can't just manage it all myself. I'm a home mom, not a working mom. I've never planned on being a working mom when my kids were at home. Now I have no choice, as most mothers out there. I know, I shouldn't complain, but today I am. Too bad I can't just put my kids first as I always have. Today the bills come first. I am trapped here while my kids need me there. Or, at least the Diabetes needs me there.

I'm also making phone calls to our Mortgage company, COBRA and Pharmacy on my lunch hour. I'm trying to pay bills that are piling up.... No wonder my blood sugar is creeping higher by the second. I haven't even eaten anything today. That probably doesn't help the grumpiness either. The mail order Pharmacy always screws up test strips. Every-damn-shipment. They send us 600 instead of 1200. Then I have to call both Endo's and get a new "prior auth" for more than 200 per month. This is the wrong day for me to play catch up with my pile of mail.

I should have known sooner to avoid frustrating things when my blood sugar is already high. Now I want to just say @!#$ it and walk away from it all. I thought my back hurts from pulling a muscle, but I am almost wondering if I have a Kidney infection brewing. My entire left flank area is screaming in pain. I'm a total mess today and my attitude is even worse. You should see this "devil" side that my poor family has to deal with when I am high. This isn't me at all. I don't even like myself at this point and I just want to crawl in bed and sleep off my anger headache. ICK. I should have checked my blood sugar sooner today, maybe I could have avoided the unwelcomed devil side of me. Probably not though I guess.

Sunday, December 28, 2008

I'm glad its over

Christmas. I'm so relieved it's over. We had many families to visit Christmas morning. Normally we do all holidays here at our house, so the running around was exhausting to say the least. We made some great memories as always and enjoyed being with each family although each visit was cut too short.

My girls couldn't wait to get home to enjoy their new gifts. I guess they are just getting to old to enjoy dress up and pretend with their little cousins. We spent Christmas night with Hannah entertaining us, rocking out to her new Rock Band for the Wii. She is pretty darn good with singing, guitar or the drums. She's the kind of girl that is good at everything she tries. Lucky girl! Maddison made pottery from her new pottery wheel and whizzed through trying out all her new toys. She got some awesome gifts perfect for a bird lover, and book that has over 250 bird sounds from around the world. As I tucked her in bed that night she said she really only wants Harlee back. I couldn't agree more.

All in all we had a great family filled day on Christmas and Christmas Eve. Did I mention how happy I am that its over? The stress of Christmas really pushed me over the edge this year. I still haven't recovered as of today, and I am stuck in hatred of what Christmas has become. I'm tired with crazy ping ponging blood sugars thanks to my poor food choices, stress and too much wine over the past few weeks. I guess I did it to myself though didn't I? Maddison is all over the place too, weird sleep times and too much cereal I think. Last night as a family we went to dinner and a movie, her pump screamed out errors the entire time. Weird. I just changed the battery the other day....don't buy the cheap $1 bin batteries. Cheap IS cheap, especially when Diabetes is concerned! I ended up giving Maddison my pump to get her through the movie. She came home at 300 and I chased numbers all night. I went to bed at 104 and woke up at 170!!! AHHHHHH!!!! I will be so happy to get back into schedule. Back to the healthier, scheduled life! I have some serious New Year resolutions to focus on. Good bye naughty Christmas cookies. Good Bye 2008....I can't wait for the new year.

Tuesday, December 23, 2008

BEEP, BEEP

This is the sound I hear coming from my cell phone every few minutes while I am at work. I try to mask the sound by putting my cell phone in my drawer. I can't risk just putting the phone on vibrate, what if Hannah or Maddison needs me right away? BEEP, BEEP is the sound of an incoming text message from Hannah. She needs to check in with Maddison's post breakfast number. Then, Maddison feels low and isn't. She is freaking out about that. Today the girls are spending the day with my mom. My mom doesn't know anything about counting carbs, Maddison's pump or blood sugar levels. She knows the basics, and yes, she was married to my Diabetic father since he was diagnosed in the 1980's. Yet, we haven't educated her with all the complexities of the pump. Hannah and Maddison do all that. Hannah sends me a text if she has any questions. Today, she has alot. Today it is stressing me out since I have just returned to work after missing 3 days for Harlee. I can't concentrate even without the continual BEEP BEEP of an incoming Diabetes question.

So, my mom took the kids bowling. They love to suck her into that! While I am so happy they get to spend some time with my mom, the thought of me having to guesstimate carbs by phone for bowling alley food is really irritating me. I hate Diabetes today. Maddison re-checked her "low", and once again says her meter is lying. She is sure she is low. She isn't. Her meter just read 213. Hannah texts me to say what Maddison is going to eat, she is starving and cannot wait for a pre-bolus. 50c are bolused for pizza and of course Maddison decides she is full after 1/4 of what she said she would eat. Fabulous. Now my mom is freaking out. Hannah is freaking out, and I am guessing that Maddison has a plan to suck my mom into emergency ice cream or candy to balance the carbs. I know better than that. Hannah does too. My mom, she has no idea of Maddison's manipulative ways with Diabetes. So I sit here so pissed off that Maddison is playing this game. And there is nothing I can do a phone call or text message away. Maddison is really going to hear it from me when I get home.

BEEP, BEEP....Hannah says she got her to eat some french fries. Fabulous. Add that nutrition to already too high blood sugar and see how high she goes now, and for how long. I text her back asking about how much she thinks she ate, her response? About three hand fulls. Oh great, even better. Hmmm, that could be 10c or 60c!!! Thin fries or steak fries? She says they were in between. My blood boils. BEEP, BEEP.....Hannah now says she is 360. She wants to know if she should correct it. I love my Hannah for taking on this responsibility for Maddison. She has a habit of having Maddison test herself too much because she is worried about a low. I hate Diabetes today.

Maddison started with some wacky numbers two days ago...Xmas vacation you know! She spent alot of time yesterday complaining that her meter is lying. She again feels low if she is over 200. I have exhausted all efforts in trying to reassure her the meter isn't broken. She wanted to trade meters with me, so we did. Now my A1c just jumped to her child range, LOL. She thought that was funny....but I just wished her new meter numbers really were her numbers. BEEP, BEEP....what did parents ever do before cell phones anyway? I have no idea what text messages are to come. I have no idea what to expect when I pick up the kids tonight after work. I hate Diabetes today, I really just needed a stress free day of work so I could focus on something other than Harlee, Christmas, Diabetes and our eternal debt.

There is good news which I really needed right now. Maddison's lab work for following up on her delayed bone age came back PERFECT. No growth hormone issues, no Celiac disease, no suspicions. She is just a "late bloomer" per say. That is something to be thankful for, that's for sure. Now lets hope I don't hear anymore BEEP, BEEP's coming from my desk drawer. No news is good news.

Monday, December 22, 2008

Tearful goodbye





Harlee just wasn't getting better, I've had a bad feeling for days. Last night I just knew he wasn't going to be okay. We took him back in to the Vet for the third time this morning. A quick poke into his abdominal cavity to check for fluid revealed our worst fear. His lab work showed probable sepsis and kidney failure although his repeat Xray was hopeful as far as his bowel was concerned. The bowel wasn't the issue anymore, an infection from surgery had taken over. Looks like Harlee developed a Peritoneal infection (abdominal cavity) that hasn't been seen in over 10 years at this clinic. Best case scenario, 30-50% survival rate with aggressive re-opening of his staples to flush out the abdominal cavity. IV antibiotics for many days, 24 hour around the clock care.

And so, I cried. I cried and cried until I couldn't cry anymore. Despite our best efforts there just wasn't much of a chance Harlee would make it. And so they brought Harlee back into the room so we could say our goodbyes. I love that stinky dog. Maddison and Hannah's hearts are broken. Harlee was the "runt" of our litter, white as snow. He stood out from the rest of his litter mates because he was so mellow and loved to be cuddled. He slept with us at night, and followed Maddison everywhere. When he was just a few months old he had his eye bitten by his dad. A month later he could have nearly drown in our pool had I not heard his cries for help. I should have known poor Harlee was a dangerous boy.
I feel horribly guilty he didn't have his surgery sooner, although I know that we still had to "wait and see" if this sock would pass. And so the stages of grief start today. Our house is a little more empty and calm without Harlee here. Alot more quiet, and very lonely. Anyone who has ever loved a pet can understand. Our tearful goodbye starts today, I hope we can soon find peace in knowing we tried all we could to save his life. ((Hugs for our dear Harlee))

Friday, December 19, 2008

Harlee


After waiting out 8 hours in the doggie ER, the vet called to inform me that Harlee wasn't getting better as expected with the IV fluids. A repeat xray now showed a pretty definative obstruction. Harlee was increasingly more unresponsive and the vet needed my decison immediately. He also needed full payment up front if I wanted him to save Harlee's life. How sickening is that? I repeatedly explained our situation with Josh's temporary unemployment, COBRA expenses, etc. I pleaded with him to proceed with the surgery and consider payments. After stressing to him the fact that I have taken all our Goldens to him for over 8 years, he finally began to listen and put his business demeanor aside. I reminded him how our first Golden suffered from Leukemia at age 6, then we got Roxxie as a puppy. Roxxie had an allergic reaction to vaccinations, swallowed a rock months later, and then had pregancy care at his office last year. Roxxie's litter of 8 puppies all came to his office for care from day one. Thousands of dollars later and many puppy referrals later he wouldn't save my poor dogs life?

So drama behind us, he asked if I could pay $500 up front and weekly payments of $500 until paid in full. WHAT? Weekly payments? No way. I agreed I could pay bi-weekly, which pretty much was a dileberate lie to save Harlee's life. Wrong? Of course, but Harlee is alive and the vet will be paid as we have the ability to do so. If this had been a terminal illness and Harlee wasn't so young we wouldn't have felt as inclined to save his life. But..... Harlee is just 11 months old and has a long life ahead of him, this was just an accident. We love our Goldens as our children, no matter how crazy they make me most days.

Total cost? $1700, much less than the $2500 I expected. Now we hope he recovers well and avoids complications. Poor Harlee, what a crazy situation. When it rains it pours that's for sure. We will probably be paying for this unexpected expense for what seems like an eternity. All that really matters is that Harlee is okay.

On the Diabetes front, Maddison is on a 200% basal DECREASE for Christmas vacation that started today. This is just a wild guess of predictability. She was 65 after breakfast, which wasn't corrected so easily. She finally hoovered at a nice 128 until she left to spend the day with her Auntie. Despite having to guesstimate her carbs for lunch over a phone call, I did AWESOME based on what she would typically eat at her favorite restaurant. A horribly fattening meal at Red Robin Burgers (Grilled cheese, steak fries, and a Snickerdoodle)(Gotta love Aunties) and 80c later, she came home hours later at......83 and zero active insulin!!! WOW, that made my day. So we see how the xmas vacation goes.....

Thursday, December 18, 2008

The hardest decision


I'm home waiting for an update on our puppy Harlee today. This morning I took him in to the vet because we suspect a bowel obstruction. Monday he wasn't well, vomited a sock which is quite common for him. How he repeatedly finds weird things to ingest is beyond me. He somehow finds things regardless of closing bedroom doors, crating him while we are away, and picking everything up that may look tempting to him. Tuesday he seemed better then began to vomit huge amounts of fluid. He had become increasing lethargic yesterday to the point we knew something is wrong. $600 later for starting IV fluids and medication, we can choose to do exploratory surgery at an additional cost of $1500-$5000. The xray is inconclusive. There **might** be something such as a sock, there isn't a guarantee. So, we wait. He could take a turn for the worst at any minute without the surgery. I'm faced with one of the hardest decisions I have ever had to make in my life. I'm completely devastated.

After my first meltdown in the vets office, I came home to a message waiting for me to call Maddison's Endocrinologist for her lab results. I can't return that phone call at the moment. I'm too afraid of what her lab results might show. I can only handle so much in one day.

This silly dog we love so much is taking every bit of anything I have left in me. We watched him be born just 11months ago and he has never left our side. As any pet owner knows, he is more than just a pet, he is a huge part of what makes our family what it is today. I have to make a decision based on a "probable" diagnosis. We can decide to "wait and see" chancing Harlee could take a turn for the worst at any minute, or go ahead with an exploratory surgery that would worsen our COBRA and unemployment situation by putting us behind yet another $1500-$5,000. I'm sickened to think that money is an issue that stands between the dog we love so much....I dont even have the words to say what I'm feeling.....please, say a prayer for our Harlee.

Monday, December 15, 2008

Bone age

Maddison's Endo just called with results from the wrist xray she had done last week to determine an approximate bone age. Maddison is now age 8 years and 4 months but her bone age is only around 5 years 9 months! YIKES! Once bone age falls behind the two year mark there are some things we need to rule out. Ultimately, it appears Diabetes has stunted her growth. Or, perhaps she is just a "late bloomer," per the Endo. Considering she was diagnosed at age 6 with an A1c if just 8.5% I don't really know what to think. Since being diagnosed her A1c has been between 6.2 and 7.8.....I wouldn't think "controlled" Diabetes would stunt a childs growth THAT much, but then again....Diabetes is a disease that manifests every single part of our bodies. So now we need to do more lab work to rule out another underlying issue. Included in her lab slip for today will be the IGF-1, thyroid panel and Celiac panel.I'm praying we dont find anything and the Diabetes is to blame.

During Maddison's last appointment in November I told her Endo I was concerned with her growth rate. I requested an xray for bone age as a mom from our support group suggested. I of course, was thinking Celiac disease. Coincidentally they "forgot" to add a celiac screening to her labs the month before her Endo visit for this years lab work. I didn't really worry about missing the celiac screening this year since last years was negative, but that was BEFORE I knew totally negative labs could turn positive so quickly as in the case of another little girl in our support group. So, I called Maddison's Endo last week to get a script for the Celiac panel which is now needed anyway since her bone growth is a new concern. I must say, Maddison has always been under the 3rd percentile for height and weight in her age group. Being consistent in this range indicates that is just normal growth for her. Or at least that was my understanding. I've ALWAYS, ALWAYS questioned her Pediatrician about her small stature since she was born, I wish I just followed my inner concerns sooner, as always.

When Maddison was about 3 months old she had recurrent thrush in her mouth from breast feeding. It was a vicious infection that we shared between the breast and mouth. Her Pediatrician did some labs at that time to see if she had any autoimmune disorders because I mentioned she doesn't feed well and I felt she wasn't gaining weight appropriately. I had a breast biopsy done the year prior and the Pediatrician assured me that perhaps I wasn't making enough milk because it is common for the milk ducts to be removed or scarred, so I should consider bottle feeding! NO WAY! So, I rented an infant scale and weighed Maddison before and after feedings. By this time she was about 5 months old and was only getting about 3 ounces most from each feeding! I decided to stop breast feeding for her best interest and she began to gain weight rapidly.

Maddison was a chubby baby, though very tiny. She loved all the healthiest baby foods and would always get in at least one great meal a day. When she approached the age of two that all changed. She briefly fell off the "charts" but her growth pattern soon stabilized with her being around the 3rd percentile for years. By age four it was obvious to me that Maddison's growth was a concern, but she also was a picky eater and preferred milk to food. I questioned her Pediatrician. They assured me since I am a petite person, this was probably Maddison too, so I let it go. It was just months later that I was diagnosed with Diabetes and my symptoms made me read more about Diabetes in children. Maddison fit every single symptom. Of course you all know my stories of how long I was in denial. And, we all know that our children "appeared" happy and feeling well for the most part for a long time until their little pancreas gave its last effort. Maddison wasn't diagnosed until two years after all the symptoms started.

This all makes me wonder if I could have helped her growth rate had I been more persistent from the beginning. I'm really afraid to think there is another underlying issue. I'm hoping and praying for the best and trying to defeat the feelings of guilt and fear at the same time. One silly xray that I requested has opened up a whole new concern. Wish us luck for an easy blood draw today!

Weekend pattern/weird conversation

The last few weekends I have been tortured trying to figure out a weekend or non-school day "Pattern" for Maddison's pump. Last school year Maddison had a weekend pattern that was easily figured out, not so this school year! Maddison does stay up TOO late on the weekends. I guess if we had no life and were in bed at the same time every weekend night her pattern would be easier to predict and manage. Ah, probably not. I think we need to bring back family movie night on Saturday nights, with a predictable bed time!

So is it sitting at a desk all day that has Maddison requiring 200% more morning insulin when at school? Is it stress? Different sleeping and waking times? What the heck is it? I am a person that likes straight answers. I like to know exactly WHY everything happens. I know, we have the wrong disease if I expect a straight answer. You would think I have learned this by now! So, I started slowly with the pattern a few weeks ago when we finally defeated the school day highs. I decreased just a tad her morning rates, because of course I didn't want her to be high. YIKES, wholy lows all day! (her school pattern is 200% higher for 7 hours compared to weekends!!) Even Maddison's ratio seems lower on weekends, its about to drive me bonkers. We check more often lately on weekends of course, trying to get it set right. So, the good thing is we catch her before she goes low and give a snack. I know Maddison is alot more active on the weekends of course, but WOW. A crazy weekend pattern is emerging, very- s-l-o-w-l-y. I think for next weekend I may have it right! Oh yea....the irritating part? Christmas vacation starts Friday! No such luck for testing next weekends new pattern! Non-school days start FRIDAY! For two weeks! Geez. Maybe I need to have Maddison do some basal testing when Christmas vacation starts. What a pain.

Maddison is so excited for vacation, but I'm already stressing about it. And, um...who is going to care for my kids while I'm at work with my new full time schedule? True, Hannah is 12. I expect her to help out with Maddison some days. But ALL day? Breakfast, lunch, snacks....until I get home from work 9 hours later? Not fair to Hannah, and not a good situation when kids get bored. I want them to enjoy their vacation and spend time with their friends, not stay locked up in the house because I'm not home. Looks like this might be the year they really need to step up to more responsibility. How much is too much? I think the Diabetes responsibility is too much. Too much for Hannah, if it were her disease that would be different. And, I wish I could spend vacation with my girls as I always have years past. I don't want to have to call them all day to check on blood sugars, I would prefer to manage them myself. I hate to think that fluctuating blood sugar management falls back on a 12 and 8 year old. I dont even have non school days figured out yet! I can already hear my cell phone ringing . Many, too many times a day. I've been spoiled by being home with my kids during vacations. I wish Diabetes didn't make vacations even more complicated and worrisome. I thought I loved weekends and days off.....I think I'm starting to not like them so much.

So, sitting here on my lunch hour at work I'm just blogging away when I suddenly got blindsided by the weird old lady that always likes to talk about her hypoglycemia. I don't know who is more confused...me or her? She was going on and on about her fasting blood work tomorrow morning at 10am. She is totally stressed that she will go low and pass out having to wait that long to eat. Understandable. But she doesn't even have a meter and has never used one ????? Ummm....why not? What has me confused though is that she said her PCP is having her fast to see if she is Diabetic. Ok, I get that, somewhat. Obviously if she is Diabetic you would see that anyway without fasting. So, I guess I am confused. She said her doctor believes her Hypoglycemia means she is Diabetic. What? She keeps telling me she needs protein first thing in the morning. Yes, I get that. She knows to use protein for maintaining her blood sugar and avoiding a drop. But, if her PCP is watching her for impending Diabetes her blood sugar shouldn't "drop" causing her to pass out as she fears. I think she is very confused between Diabetic and hypoglycemic, she keeps telling me she doesn't want to have to take shots. But, she is worried about her Hypoglycemia most. (???) I mentioned some things to her and she looked at me like I was crazy. Then, she had some even more bizzarre responses and I looked at her like SHE was crazy. It was actually quite funny.

Before Diabetes I was confused between Hypo/Hyper too. I never even knew there was a Type 2 Diabetes and I didn't realize that children could "get" Diabetes because my father was an adult when diagnosed. I guess before Diabetes it is entirely confusing. I always had "low" blood sugar feelings being sweaty, pale, faint etc ever since I was a child, so I had to eat often. I realized many years ago that my blood sugar dropped after sweet foods or huge carb loads. When I was older and I was employed in ER's, doctor's offices and clinics I would test my blood sugar when I felt low. I would always be in the low 80's.....so does that mean I was used to being higher? Like too high? Anyone can be hypoglycemic if the circumstances of fasting, lack of food and extreme excersize are combined just the right way. So what the heck? Why make a hypoglycemic person fast if you already know they are hypoglycemic? And why doesn't she have a meter? What if she was hitting the 40's? No one would ever know the severity of her Hypo's unless she was testing. I don't get it. So, she was telling me she will bring a PB&J sandwich to eat immediately after her blood work. All I could think to say was YOU BETTER BRING JUICE! And she looked at me like I was crazy. -Sigh- What a weird conversation.

Friday, December 12, 2008

46 and combative

Early release from school was yesterday. The girls get out at 11am. Since I was at work all day and Josh was home with the kids, all I can do is assume the many hours of running and biking outside is what caused Maddison some lows before bed. At bedtime she was a grump monster. She was 65 with zero active insulin. Normally (the key word here being NORMALLY) 8 carbs would have her back in safe range for bed. Knowing she had many hours playing outside all day I gave her 15 instead. She was then 98 going to bed. I would check her in another 30 minutes to assure she settles in the 120-130 range for sweet dreams.

She hoovered at 98 for nearly two hours until I decided to go to bed at 11pm. Josh was up, so he would check her in about an hour. She was then 65, or so the meter said. I could hear Josh trying to get Maddison to drink juice. She refused with twisting and turning and hiding under the covers. That isn't typical for her. Normally she would suck down a juice box in seconds as most Diabetic kids in their sleep. After coaxing and pleading Josh was becoming angry with her (a bit of stress these days at our house!) and I decided to take over knowing she would be more resistant to Dads vicious commands. I figured she was perhaps dropping fast because of her unusual combative response. I got her to take some juice and two glucose tablets although she was now screaming NO! NO! I waited only about 5 minutes to recheck because I was sure she was lower than we originally thought. The meter showed a frightening 46.

I carried Maddison off to my bed and laid awake for what seemed like hours. Although she was a "safe" 138 by now, I always fear going back to sleep after a serious low in the middle of the night. I have to make sure she doesn't wiggle or move in strange ways indicating another impending low, or every parents fear, a seizure. When I finally fall asleep with my arms around her tight, the slightest move makes me leap out of bed confused and reaching for her meter. It happens every time. This has become a vicious cycle for me after Maddison's lows in the night. It even haunts me for days. As Penny mentioned yesterday in her blog.....is this irrational? In some ways yes, but still, anything is possible with this horrid disease. This isn't irrational, it is the scary truth.

Maddison has been doing so well overnight the past month or so that I even sleep for an entire four hour stretch without getting up to check her blood sugar. I think tonight I might be tempted to check her too much. I don't like Diabetes to take over my mind and cause fear. The more I worry, the more irrational my fears become until the point that I end up angry with this whole Diabetes thing. I don't like being angry and bitter. I don't like living in fear. Seeing a 46 in my combative 8 year old little girl brings back all of this, yet they tell us it is just a number. Do they know what that number FEELS like to parents that manage Diabetes? Diabetes to me, actually isn't about the numbers. I can manage the numbers. I feel in control of that for the most part. Diabetes for me (being an overly emotional person!)is day after day of trying to "stabilize" emotions. I don't want to be angry when Maddison is high. I don't want to be terrified when she is seriously low. I don't want to feel scared when I send her off to school. I don't want to feel guilty when I can't figure things out. But, I DO. Maybe at some point I will be able to just coast through our days without feeling each number? Or maybe I think that is when you start to not "try" anymore. Maybe that is what I am afraid of?

I have a really strange way of purging my "irrational" thoughts and emotions to myself and then immediately brain washing myself into letting it all go. Forgetting it all. Then I make a mental list of all the positives, the good days, the blessing of modern medicine, faith in someone always being with us to guide us through. It is then that I move on, I'm back to seeing numbers just as numbers, not feeling the emotion tied to it. I can then learn from it.

At the moment though, it breaks your heart when you see 46. It takes your breathe away in the middle of the night knowing your little girl doesn't feel it, she needed you to keep her safe. Picture a combative, tired little 8yr old girl all snuggled up in her pajamas. She has big brown eyes, and golden hair. She's sweaty and pale, and she is just trying to sleep. 46, to me, is alot more than just a number. I wish they understood that.

Thursday, December 11, 2008

40M Research Donation!

40 million to Diabetes research!!

Lectured, my smarty pants!

Maddison said some funny things today....It started when I bought a bag of the holiday Peanut M&M's...dark chocolate! My favorite!

Maddison: (in her sarcastic, silly voice) "Mom, why would you buy PEANUT M&M's"?!!! "You know why?!" "Because you know I won't try PEANUTS and you don't want me to eat junk!!" "You bought the PEANUT kind because you don't want me to have any!"

ME: (with a mouth full) "I bought them because they are my favorite" "I never buy anything for myself"

Maddison: "Yeah, right" "You know that chocolate is easy to bolus for, it always turns out right for me, you even said so a hundred times"

ME: "That is true, you are a lucky chocolate eater like me"

Maddison: "Well you have Diabetes too you know, it isn't just me you have to take care of, you have to eat healthy yourself too"

ME: (feeling very guilty)

Maddison: "What did you have for lunch today at work mom?"

ME: (thinking UH OH!) "Nothing, I was too busy to eat today"

Maddison: "So you are eating candy for BREAKFAST AND LUNCH at 3pm, AND you have Diabetes mom"

Thanks for the reminder Maddison! Yes, I was really eating for the first time yesterday at 3pm and yes, it was Peanut M&M's. My justification? I decided to say I was testing my basal rates. (although I had 2 cups of coffee that was bolused!) Maddison didn't buy it. She told me I shouldn't treat my Diabetes any differently than hers. -Message clear-

Somehow we changed the subject to testing blood sugar in the classroom. I asked her if she would want to try testing herself (even though now isn't a good time)without supervision from the nurse. I explained why I think it is too complicated for her to treat her own lows in class without help.

Maddison: "Yeah, how would I understand digestion and know how much insulin I have active?" "Maybe I would only need 4c, I would want to eat like 50c"

ME: "Wow, you understand why it is tricky though!"

Maddison: "Yeah, my teacher doesn't. She doesn't know anything about Diabetes" "I'll tell you when" (when she is ready to)

I guess she listens more than I think she does! I always explain all my decisions of managing her blood sugar to her, I just thought she was bored and not caring to hear me. I guess she knows more than the average non "D"!! We even went on to talk about why ice cream, pizza and corn bread is evil for her 4-8 hours later. Then she came up with this....

Maddison: "Yeah, well, I know cereal gets me right away! I know it spikes my blood sugar in the morning too much, that's why you let me eat it AFTER school."

-Sigh- She is one smart peanut! (M&M!!)

Wednesday, December 10, 2008

Tragic medical error for one little girl

I'm sure most people in the Diabetes world have heard THIS horrible news story about a little girl with Diabetes. I myself questioned the mom's conviction right away. Why you ask? Besides the fact that the medical staff, CPS and the reporter has NO IDEA how difficult it is to manage a child with Diabetes, the story stated that the little girl was always so happy and smiling, bubbly and energetic. If that was in fact true as reported, those words do not describe a child with out of control blood sugars. If this little girl was neglected by her mother as the story stated, she would not feel well. She would be sick often and she wouldn't be so smiley all the time. High blood sugar drains you, low blood sugar drains you. Swinging from highs to lows drains you. The story just didn't sound right to me.

Reading this article all I could do was cringe. I kept thinking how the news stories you hear are only half fact, half fiction, if that. I mentioned to our support group Moms the "What ifs" because we all know too well how Diabetes can turn life threatening in the blink of an eye. Dangerous blood sugars don't mean your child is neglected, out of control or that you don't know what you are doing as a parent managing the disease. Dangerous blood sugars can result from illness, stress, sudden change in insulin needs, wrong carbs counted, failed pump sites, too many things to list. What if this mom was trying her best? What if this little girl had the flu, a cold, strep throat, an infection....something that was making her SUDDENLY need ALOT more insulin? Maybe her mom was doing the BEST she could to keep up with her blood sugars? Maybe the mom was uneducated? That wouldn't necessarily mean neglect! What if? I hated this story right away. All I could imagine was me being in this moms situation and no one, not even the medical professionals understanding ""WHY"" this little girl was "out of control"......who are they to say when they don't live this chaotic life? The article NEVER should have stated such claims when they don't even know the child's documented medical history. Where were they getting their information?

I could picture some school nurses thinking some Diabetic kids are "out of control"....you know why? Because people that don't live this life think 80-120 is controlled. They think that hitting 200 is "out of control" or that we did something wrong to cause it. They think frequent lows are out of control. They have no idea. Nurses and Doctors learn from a text book, they can learn "standardize" management for children, but they really have no idea what we as parents go through to keep our children "controlled." They have no idea how often doses change, no idea what can effect blood sugars. I would stand beside ANY parent that manages their child before I ever would ever convict them of neglect.

Today when THIS article following up on the mothers conviction appeared, I can't explain how I felt. This could have been any of us parents with a Diabetic child. My understanding is that the Life flight crew gave too much Insulin in an IV drip to this little girl. Too much insulin, too fast can cause a rapid change in blood sugars. Too fast of a blood sugar drop can cause Cerebral edema, shock, coma or in this case, DEATH. WHY? Because all they knew (I assume) was to give insulin IV dosage as the "book" states. By weight of the child, by the extreme of the blood sugar, by the guidelines of DKA dosing instructions. The Life Flight crew wouldn't know this child's insulin sensitivity, (amount of insulin needed to lower blood sugar to target range)unless they asked the mother, or main person that manages the child's Diabetes. Insulin dosing is all a guessing game, it isn't a straight dose that equals the same result for everyone. 1unit that drops one child 70pts would drop Maddison 220 points, because she is Maddison. Individual to each person. Everything with Diabetes is individual to EACH person.

Assuming the overdose of IV insulin is what happened, I am devestated for this little girl and her family. She was 8 just like Maddison. Regardless of a dosage error or not, this could have happened anyway. Maybe it wasn't a medical error, maybe the circumstances and childs condition just couldn't be reversed. That happens alot with DKA, something else that people should know. This is exactly why us parents that have children with Diabetes can never let our guard down. This is exactly why Diabetes is a SERIOUS disease, every day. People out there need to understand this. It is heart breaking to think that maybe this mother was neglectful. Diabetes is an all time consuming Disease, you can't let the numbers slide. Diabetes for the child that has an uneducated or careless parent is devastating. That child will suffer, perhaps endlessly if not immediately.

Remember when Maddison had her bout with the stomach flu and ketones that sent us to the ER a few weeks back? This little girls tragic story could have been US. I could have been the mother blamed neglectful for whatever crazy reason. Maddison could have been this medical error. As I continually pleaded with the ER doctor to help me understand why they were sending Maddison home (with seriously high ketones) I really thought at that moment that the ER Doctor didn't know what they were doing. I needed them to explain to me WHY they were sure she would be okay. I have read the tragic stories too many times for children with Diabetes. I couldn't leave without feeling right with their decision. Thank goodness they were right.

We don't know the truth behind this news story. I can hope this little girl wasn't neglected. I hope she wasn't the victim of a medical error. I wish people understood this disease, I really do.


**note to self** I'm adding this comment to my own post realizing that in the 2nd article it states that the little girl was given Glucose instead of insulin which resulted in her death. Wow, that is a whole 'nother story! *****note to self, understand the article before you go off on a wild blog post, LOL!!***

Tuesday, December 9, 2008

One simple email

This morning as I hit snooze for the 5th time, all I could think about was hiding another few short minutes. Pretty typical for me, I don't bounce out of bed in the mornings anxious to start my day. Does anyone actually do that? I was pretty bummed about life in general driving to work and listening to the morning news doesn't help. I think I need to switch to some feel good music on the long drive. Yes, I was tired, worried, and stressed out from the get-go this morning. I haven't mentioned this yet (because I am too devastated to even think seriously about what this means) but Josh's last day of work was 8 days ago. After giving a two week notice to his then employer, they just let him go right there on the spot. They took him off the schedule. As in, no pay....no employment, no incoming paycheck. Unemployment.....the $240 a week he will soon be entitled to won't touch the kind of monthly expenses we carry. I'm shocked and overwhelmed to say the least. Josh's new job won't start until next week. That's over 10 days without pay!

Surprisingly, one simple email changed my outlook today. It was titled "Maddie today" as the school nurse often reports. Most days when I get these emails the nurse is informing me of something bizarre with blood sugars, asking a question, or letting me know of Maddison's bad attitude toward her meter for the day. But not today. Today she reported Maddison's GOOD blood sugars. The school nurse knows I worry endlessly about Maddison's numbers and she knows I keep my email open at work anxiously waiting to see if anything comes up. Yesterday morning as I waited out Maddison's lows in her office she could sense my desperation and exhaustion in chasing Maddison's recent morning highs. So today the school nurse must have known her one little update would perhaps brighten my day. Her one simple email changed my bad attitude instantly...

Up pops the "Maddie update"
122 at 9am
132 at noon

Thank you Jesus! Maybe all the basal tweaking is going to finally be right. Today it was anyway, on a day I needed some good news the most. Funny how this good news "Maddie update" turned around my whole outlook for the day. My thoughts of uncertainties turned to thoughts of knowing somehow, we will be okay. We always are. We will make it through this hardship. I began to feel optimistic instead of doomed to drown in financial despair. The world has seemingly been a cold and scary place more so lately, the news gets scarier every day. Recession...political wars...healthcare...social downfalls. I sat at my desk reminding myself that fortunately I'm able to increase my work hours to full time, just like that. Sometimes there isn't extra work available for me to put in extra hours if needed, but right now there is plenty of work available. I have been working 40 hours instead of my regular 25 hours a week, that in itself will help us financially while Josh isn't working. I'm thankful for that. I've never been the breadwinner of our household, but I'm trying my best.

One simple email erased all my worries, just like that, even if only for today. I breathed a sigh of relief in knowing at least something today worked out right.

Support Dr Faustman

http://faustmanlab.org/News/FaustmanW2008_updates.pdf

Monday, December 8, 2008

Santa Saturday


Saturday we had our 2nd annual support group Christmas party. Look at all these cute kids! The highlight of the party was Santa bringing a gift for each child. It was so heartwarming to see the reaction of the little ones. My girls aren't into Santa of course, but they always know to play along for the little kids. There were only about 8 families that could make it this year, but regardless of the void in missing some very special families, we still enjoyed just being together for a little holiday cheer.

We brought a new family along with us this year! Maddison's best friend across the street plays soccer and sadly, a team mate of hers was diagnosed back in October. Saturday before the party we got to meet them for the first time. The girls all got together and played awhile at our house before we were off to the party. We are so excited that "Khloe" and Maddison are just like each other in so many ways! Animal lovers, bird lovers, chocolate lovers, they love to be outside! I am hoping a very special relationship will emerge, and we are hoping to help "Khloe" know she is not alone in these first trying months.

As far as blood sugars go, I guess I might as well learn that "stability" we once knew is no longer. CRAZY looks like our new way of life. I should spare the boredom of what we all already go through, but as always I need someone to listen. Last week was the week after Maddison's yucky cold. Last week it also took 250% basal rates to keep her in range. She did great for three days. Great overnights. It used to be I could make changes for Maddison's insulin and she would stabilize quickly and remain there for quite some time (like months!)even with growth spurts. No longer. I think I am in denial lately....Saturday Maddison was low all morning, high all afternoon. Then low twice before bed. Yesterday was Sunday, she was low all day even on her less basal weekend pattern. I think this week she will be back to her old basal rate since we are 2 weeks after her cold. I'm seeing the pattern here.....High during the illness, high for a week after, then back to normal basals two weeks after the illness. Fabulous, now how am I supposed to know if today basals should be turned back to where they were? Well, by lows this morning of course!! This morning before school Maddison started at a perfect 123. She was 81 just 45min after breakfast when we arrived at school. I wasn't going to check her but she looked pale. Good catch mom. I treated the 81 with a bit extra knowing my mommy gut is right. Looks like I should turn down the 250% for this week. Recheck and she was 62. Double treat, I should have listened to myself sooner. By now we are sitting together in the nurses office waiting for her low to come up just amazed with all the whiny kids on Monday morning. She is out of strips...so I run home to restock her drawer in the nurses office. Come back, she is 100 and off to class. I hesitated a moment. Hmmm.....turn down the basal or not? Did her breakfast with a ton of Peanut butter delay her absorption? By now as I inform the nurse of the CRAZINESS chasing numbers, she is not hearing me and probably thinks I have no idea what I am doing managing a child with Diabetes. Oh well. If she only knew. I set a temp basal decrease back to where we started weeks ago and as always......We shall see.

So a great weekend! Santa Saturday was enlightening. I might even be feeling the holiday spirit! I love each and every one of the kids and siblings that make up our support group. I worry about each and every one of them too. I cherish the parents support, we are all so blessed to have each other. I would be pretty lonely and uncertain without our amazing group of families. I love you guys!

Friday, December 5, 2008

Disorganized today

Today I got to work and noticed I didn't have my beloved meter with me for the first time ever! I had used it to quickly check Maddison as we ran out the door this morning because of course, we couldn't find Maddison's so I am sure it awaits me on the kitchen counter. Since I drank a little too much wine last night, I was worried about going low since it takes me a good 12-18 hours to get that alcohol out of my system. Of course seeing that I didn't have my meter I started to feel a little low right away. Funny how powerful the mind can be. I had also just gotten off the phone with a claims representative (she had no idea what she was talking about!)and to say the least I was a bit pissed off after getting the run around for the 100th time on the same damn insurance claim. My heart was racing and I couldn't think straight. I thought for a few minutes. Hmmmm.....is this a low or an adrenaline and anxiety rush? These insurance people can REALLY get your blood boiling when you know they have no idea what they are doing. You don't realize how much you love poking your finger until your meter isn't there! I thought maybe I'm just a little low. But, being the wine from last night maybe this is one of those SNEAKY lows that you dont feel until the damn 32 is staring back at you on the meter screen!

So, I sipped someones Sunny D from the fridge. I'm lucky someone at work had juice, I didn't have anything but Peanut Butter and an apple! Sitting here on my lunch hour I am eating some pizza, hoping I come home in range.....we shall see. I dont know how they did it years ago without meters!

Thursday, December 4, 2008

2 years ago today

Two years ago today as my cell phone rang, I had no idea how instantly my life would change. I became a voice, I stood my ground, and I am thankful denial left me that day. With panic and fear overcoming me, I found something I never knew I had within me. I found the courage to insist that Maddison's Pediatrician stop and listen us. My passive and shy nature was taken over by a mothers intuition, knowing that something is not right with her child. I became demanding and belligerent, something I have never once resorted to. As Josh called me at work that day, his words infuriated me. "The doctor said she just has a UTI Kelly, she is fine." But my denial had ended earlier that morning after Maddison wet the bed for the second time that night and moaned with stomach pain. I pretended all was fine as I got her ready for school, I even smelled the strange ketone smell on her breath for the first time. Why couldn't I just poke her finger and verify my suspicion? It would have been that easy. To this day, I dont know why I didn't, or couldn't. I guess I was just frozen with fear and believed only a doctor could diagnose Maddison with something such as Diabetes. I didn't even know the seriousness of the ketone smell on her breath, after all, they don't educate us adults with Diabetes. I only knew what I had learned myself through the Internet and many months of readings, I had no idea Maddison was nearing DKA. I made an appointment with her Pediatrician as soon as I got her off to school. Thankfully Josh was home from work that day and could take her in to the first available appointment.

After seeing the doctor a few brief moments Josh called me at work. Over a cell phone conversation he could hear the stress in my voice. He could hear that I was serious in believing Maddison had Diabetes now too. I told him to tell the Pediatrician that they need to check Maddison's urine for sugar and Ketones. I reminded him of her increasing irritability and totally uncontrollable meltdowns, her dark circles under her eyes, the increase in urination, bed wetting.... all the obvious to me. Josh didn't want to second guess or challenge the doctor, but he agreed to tell the doctor my concern. (she was unable to urinate so they just assumed she had a UTI because of the bed wetting) I know Josh thought I was just over the top with paranoia since I was diagnosed just 9 months prior. The doctor stepped out to write an RX to treat a UTI and when he returned Josh told him that I was insistent he check her urine. (why couldn't I just poke her finger!!?) The doctor proceeded to tell Josh that if Maddison had Diabetes she would be "much sicker than this" but he agreed to wait until she could urinate and check for sugar and ketones. My question is, why didn't they check the urine before making a diagnosis? I don't know the answer to this, and I will never understand how a Pediatrician could/would take the risk of making such a diagnosis without actually having a urine sample. It scares me and infuriates me every time I think about how Josh was nearly sent home with Maddison having just a UTI diagnosis!

After Maddison was able to pee in the little plastic cup the MA took her urine and the Pediatrician literally returned seconds later. Since I was at work while Josh took Maddison to the Doctor, I can only imagine the shock on that doctors face when he returned realizing he almost turned away a little girl that could be very sick, very fast. Josh said the doctor tried to act calm and collected, but he knew I was right after seeing the poor guy fumble with his words. I hear these stories all the time. Children sent home from an appointment misdiagnosed, only to be in DKA and possibly near death within days, even hours. Josh called me back at work minutes later and this time when my cell phone rang I knew we were on our way to Children's Hospital. Ketones were large, sugar was off the chart. Finger poke, 497. I'll always remember this day, I couldn't believe I was right. It was surreal. I thought I was prepared to hear it, and I wasn't. How could this be? She is fine most of the time! She still runs and plays, smiles, acts "normal" for the most part. I had an excuse for every symptom for so long. What are the chances we would be diagnosed 9 months apart? It just couldn't be true. The rest as they say is history, or should I say a painful memory?

Two years later Maddison can't even remember what it was like when she didn't have Diabetes. The finger pokes, carb counting and site changes all become routine. I still log numbers and worry endlessly about Maddison's health and well being. Some things never change. But I never thought any of this would feel normal as every parent promised me. How could needles, lows and highs ever be normal? How could I ever just see a number and fix it and move on without beating myself up? The first entire year I just couldn't accept that this chaos could feel normal, never, ever! Two years later here we are living a totally "normal" life. We really, truly are. 9,000 finger pokes down. Countless injections, site changes, highs and lows, all normal for my eight year old. Diabetes care will never feel "normal" in our hearts, but acceptance somehow guides you through each day. We still have days when we just want to hide. Some days we do hide, or should I say I hide. We still get kicked down, and we always get back up. We cry, we scream, I complain-ALOT! But I also make sure to remind Maddison how lucky we are that we are strong enough to prevail every day. I remind Maddison of the other children that were in the hospital with her that day. Some of those children would never walk again, some of them endure endless chemotherapy treatments and would not make it to see their next birthday. Some of them need organ transplants, lost limbs, lost family members in a trauma situation. Some of those children would never be the same again. We ARE. We are exactly who we used to be, and a little bit more. Maddison really understands that. She does. We have found strength to endure more than we ever thought possible. We have learned to cherish the good days, and have faith that bad days shall pass. We learn something from each and everyone of our hard times. Our appreciation for life itself is always with us, we are more compassionate and understanding of others differences. Most importantly, we have learned that until you walk a mile in someone else's shoes, you should offer nothing but a kind ear and open heart to listen and understand everyone has their own triumphs in life, all different, but all equally as trying.

Today as I think about being 2 years in to this chaos I am amazed how my outlook on life and living with Diabetes has changed. I honestly thought I would never overcome my grief, anger and fears. I have learned that time really does heal. 2 years ago today I wasn't the person I thought I was. In a strange way Diabetes has made me the person I have always wanted to be. I am emotionally and spiritually stronger, more determined to live the life I want to live and I never give up. I give Diabetes my all each and every day, because for Maddison I have to. 2 years ago today I cried all the tears I could possibly cry, but Maddison was strong. She smiled and told me "it would be okay mom." I finally know now that we really will be "ok." In fact, we are "brilliant" as Maddison would say. Despite all the complaining and venting I do here each day, I am very much at peace living this "normal" life. We still make the best of each day and we have many cherished friends that we would be without had Diabetes not brought our families together. Our family has grown and learned so much together these past two years. We defeated some truely miserable days that left us feeling hopeless and scared of what life has to offer. We have rejoiced in many ways, many times, over simple things. Two years ago today I had no idea we would make it to where we are today. Life is a little sweeter, alot more complicated, but still the same in the end.

Wednesday, December 3, 2008

I'm screaming here people!

What else is new? I'm so done with school days and figuring out blood sugars! I mean really! I have said it a hundred times since August, and I am going to scream it again! I upped some of Maddison's basal rates again today for morning highs. It helped some, today she is lower 200's instead of yesterday's 240-290's all morning until lunch at 12:30, she was 152. Then she came in feeling low just before leaving for the day. She was 198. An hour after getting home she was 72 with .5 active. But that was also a PE day, so who the hell can say for sure? Can you hear me screaming here people? I just want Maddison to feel good and be in range while at school! Thats it! It really isn't too much to ask!

My next approach would be adjusting ratios again as I did weeks ago. Everything I tried was no help at all. Ratio's are usually the last thing I need to consider. Maybe her correction factor? Her sensitivity during the day perhaps has changed, which of course causes the pump not to allow corrections for the breakfast highs. That could be. Maybe her duration of active insulin? She has a nice new arm site today, so her site isn't an issue. I would like to give the adjustments another day to know for sure, but I thought basal adjustments should help right away!!?? I know they always have in past. I dont know, maybe she's eating crayons. Maybe she decided she likes to eat dirt. Maybe the air in the classroom has sugar in it? I'm screaming here people!

Tuesday, December 2, 2008

Trying her best

Today I had my weekly talk with Maddison's teacher to discuss how the past week has been for Maddison in class. Although Maddison had a yucky cold last week and was obviously not feeling well, her teacher had alot of great things to say about her participation and attitude in class. She mentioned that she can finally see Maddison making an honest effort of trying her BEST. She said that Maddison seems to "care" about her work rather than being sloppy and inattentive! Hooray! She is also in the highest reading group (reading is her strong point) and her overall attitude about class work (especially math) has really made a complete turn around. Maddison has even been doing extra credit math activities and she has exceeded expectations on new math concepts in last weeks studies! I can't tell you enough how proud (and relieved!)I am that she is FINALLY trying. She has had a horrible attitude this school year and pretty much reached shut down mode as soon as she entered school grounds. She finally cares! I knew she could do it if she just cared enough to TRY!

Something fabulous is really going on here. Maddison is taking giant leaps towards higher responsibility and independence just over the past few days. I'm not sure what is pushing her in this direction, but she is obviously feeling empowered and motivated. Alot of changing has been going on....normally when Maddison is low she will find me first and then I check her blood sugar. Lately though when she needs to test for a low she does by herself and then tells me her number, asking how much insulin is active and how much sugar or carbs she needs to treat it. I've been reminding her for months that she should check her lows quickly herself and THEN ask me about the carbs. Done deal I guess, she's got it covered now. Today she said she was feeling brave, and she is now proudly wearing her first arm site! I've noticed alot of other little things too.... She decided I cannot pick out her clothes each morning and she doesn't need my help for anything really, not even homework. She cleans her room with detail, no more stuffing everything in crazy places. I haven't had to remind her of her chores since last week either. She has it done. God forbid if I try to help her perfectly smooth her hair each morning! Today she told me not to touch her hair anymore, she can fix it herself! Amazing. She has always been an all or nothing kind of girl.....right now she is working on ALL part. Maddison is really trying her best in everything she does, every day lately. What a great feeling. Here is the real shocker.....the school Nurse emailed me today to say that Maddison told her she now LOVES school. WHAT? I'm wishing this IS true. Just like that? I dont know what they did today in class, but it sure made Maddison's day!

Monday, December 1, 2008

BLACK Monday

This morning Maddison made it clear once again that she considers Mondays to be BLACK MONDAY in her book. She still despises school (I am thinking she always will) and complained all night last night about Mondays being the worst day ever made. I silently agreed. She is just too much like me it seems!

She woke up at 237 on this BLACK MONDAY which rarely happens..it seems I failed to wake up for her 3am check after a correction at midnight. Had I checked her at
3am as I always do, she wouldn't have started her day so high. Damn it! In comes the guilt. Add to the yucky 237 an unusual breakfast of french toast sticks and she came in to see the school nurse 30 minutes after school started for feeling low. She was 267!! AHHHHH! I gave her a huge pre-bolus before breakfast!! We perfectly counted by carbs on the box! I guess we should have stuck with the typical breakfast this morning. Maddison was back in to see the nurse an hour later for her pre-recess check and she was 290!! There goes the "good" number streak from over the past week! I am feeling a bit of BLACK Monday here, can we please start the morning over?

Surprisingly, I was looking forward to returning to work today until Diabetes spoiled my outlook. I really need to work on numbers just being numbers and not letting them piss me off, I know. -Sigh- Anyway, being month end at work I was pretty eager and motivated to get November closed and see the results of my appeal attempts and A/R for this month. It has become obvious to me that towards the end of each calender year Insurance companies start to deny even more medical claims as a way to end their year with better outlook for profit vs loss. It's a dirty game I tell you! By November each year I can expect a huge increase in my claim denials which in turn makes me very determined to kick the insurance companies ass and refuse to play their game! Eventually I can usually defeat them at their own dirty game. It's too bad I'm not compensated a percentage of what I bring in. That would be a pretty penny!

So I'm hopeful this BLACK Monday turns around. I'm off to the Endo after work, she better not nag at me today! She always wants to get my morning numbers down,(130's) despite what my A1c may be. I think tonight I will enjoy a glass of wine and ignore the laundry that is piled high. Isn't Tuesday supposed to be Terrific Tuesday? Hmmm...I could use on of those. I wonder if I can convince Maddison of that one?

Saturday, November 29, 2008

Today I learned something about Miami

Maddison and I took a walk down "Bunny Trail" this afternoon, which is her favorite walking path in our neighborhood. We often see many bunnies hopping about there, and once we even found a turtle! She collected many interesting items to make a nature collage. We were talking about nature things as Maddison loves to do on the walk and as always, she shared some very informative facts that she learned by watching Animal Planet. Today Maddison taught me some things about Miami. She said "Mom, did you know that in Miami when the Crocodiles leave the swamps they invade the neighborhoods? Then the biologists and animal rescuers have to relocate them back to their own habitat so they survive and so that they don't eat people and other animals or pets. If they cannot relocate them, they have to be euthanized." These were her exact words. I just thought this was so funny and she used some impressive words. Very smart girl my Maddison is!

Friday, November 28, 2008

One year blogging

Today is my one year blogging anniversary. I find peace when I blog my frustrations, thank you all for your kind words, support and understanding! The first blog post

Thank you for "good" numbers

Did I mention how grateful I am for the past few days of Maddison's GREAT blood sugars? Maddison has been blessed with GREAT numbers since Tuesday, none over 150 and none under 70! She is still on a 200% basal rate for her cold, but WOW, amazing blood sugars considering the Thanksgiving feast and treats galore, Hannah's birthday cake, eating out several times AND fighting a cold! I am so grateful for these few days of peace with numbers.... I'm completely relieved from the stress of all the recent highs. These numbers couldn't have come on a better weekend. (yes, I do realize I worry too much about numbers)

In the OH NO! news category, my endo called me on Wednesday at work to let me know I need to come in sooner than my December appointment. It seems my TSH from recent lab work came in very low so we need to do some additional blood work. Unfortunately, I have had Thyroid nodules ever since I can remember. I am over due for a follow up Ultrasound on my Thyroid to evaluate any changes. In months past I have had low TSH levels that have always recovered without the need to start medication, but this time I feel we are looking at the death of yet another part of me. Bye Bye normal Thyroid function! I'm not surprised, and I'm hoping for the best. I have been nauseated daily for weeks since our bout of the stomache flu and perhaps that just did me in. The GREAT news....my A1c came back at 6.1% which matches perfectly with my meter average. Of course now my goal is to get my A1c under 6% (ridiculous, I know) So, I have minor adjusting to do with overnight basals since I can't seem to wake up under 130. Overall, I am ECSTATIC for having a break with Maddison's chaotic blood sugars and thankful I am still a honeymooner with a very healthy A1c! Now hoping for an easy Thyroid answer........cheers to a great LONG weekend that is just beginning!

Look at her now


We officially survived BLACK FRIDAY shopping today for Hannah's birthday! The mall wasn't actually as crazy as I expected. Talk about a birthday meant for a 12 yr old.... Hannah received over $500 in cash (I think I used to bring in about $50 most at her age!) from family and Mom and Dad to spend as she wished. We also took Hannah to lunch at her favorite restaurant, and took her to get her hair done. We stopped for her favorite Jamba juice and then took her to visit our awesome neighbor and friend Lisa, a make-up artist who manages MAC cosmetics in the mall. She taught Hannah some make-up secrets and tricks and showed her how to apply the sultry eye make-up that all the girls wear these days. In the end, Hannah is looking just a bit too old for my taste, although she looks beautiful and her eye make-up is gorgeous indeed! (Hopefully not an everyday look, but fun for today!) Hannah set aside some of her birthday money to shop for her own Christmas Tree Angel, but we will have to return tomorrow and complete the shopping for the little girl she chose. What a generous and caring 12 year old I have!


Just look at her now! Isn't she beautiful?!!

Thursday, November 27, 2008

12!!!!



Well, this is it. This is the last day/year that we have a pre-teen Hannah. Next year Hannah will 13! 13 is a year away and I'm already freaked out about it! Today my Hannah is 12!!!!

On 11-28-1996 we had our first beautiful baby girl. At 5lb 15oz she was just a tiny little thing, arriving nearly a month early, but I was completely prepared and surprisingly not nervous at all. From pregnancy to labor and delivery, everything with Hannah was the perfect new mom experience. (except the borderline Gestational Diabetes!)I never felt more beautiful or happy in my life. I LOVED being pregnant and was so sad when I didn't have her inside of me kicking around anymore. Despite my young age of 19, I couldn't wait to be a mom. I think I am just naturally a person of nurture. Josh was the perfect Dad-to- be and he was/is fabulous as a Father. We never imagined 12 years could fly by so quickly. From first steps and first words, to the first day of school, Hannah was a remarkable and loving little girl. She was filled with smiles, hugs, bright ideas and always left us laughing at her silliness. I miss my little girl!

I know that same little girl is still here hiding somewhere underneath the skinny jeans and eye liner. Although Hannah spends alot of time in teenage mode, she still has her silliness from time to time and loves to make others laugh. She is still very much a Daddy's girl.....not fair I say! Hannah is remarkable when it comes to understanding others and she has such compassion for everyone. Even when McCain lost the presidential elections Hannah said she felt bad for him because she was sure it was his dying dream to become President before he passes. Then she went on to explain in detail how old the poor guy is, leaving me laughing out loud! That's my Hannah!

All Hannah wants for her birthday is to go shopping! I'm not allowed to shop for Hannah anymore, she has to pick out everything herself. I guess I am am lame mom at the young age of 31! It seems she despises what I think she will like, and likes what I despise. Imagine that. Did I mention her birthday is on BLACK FRIDAY, the day after Thanksgiving?! Wow, she has no idea that is asking alot from me, a mom that hates shopping on normal days! So out into the chaos we will go, I am sure she won't let us bypass the mall, although I am still convincing myself she will. So HAPPY, HAPPY 12th birthday to my little girl!!! I love you more than you know!

Wednesday, November 26, 2008

Weird, silly and random things I am thankful for

Besides our health, our children and family, our beautiful home, the food on our table and the fact that Josh and I have good jobs, there are some weird and silly things I am thankful for. Some of these things that I am thankful for are even normal day to day items and places. Tonight as we have the usual dinner as a family, I plan on asking the girls what obvious, weird and silly things they are thankful for. It should be interesting since Hannah always has something very strange to mention. I love that girl. I am thankful that her sense of humor (or is that weirdness?) keeps me smiling!

Random things I am thankful for:

My camera that has captured priceless memories
My feather comforter that I couldn't sleep without!
My own office at work
An employer that treats us as family and understands WHY I miss so much work!
Cell phones that leave me feeling connected even when Hannah is away!
Aunties making a place in my children's lives
My stinky, hairy Golden Retrievers that drive me crazy
The PAST experience of having 8 perfect golden Puppies!
Febreeze!!! With three stinky Goldens it is a MUST HAVE!
Our school nurse
Our cul-de-sac street
My treadmill that is patiently waiting for my return.
The CORE excersize ball making crunches easier!
My garden
Grandma supporting Hannah's Club Volleyball wish
The "bird lady" where Maddison volunteers
The "horse lady" where Maddison rides
Our dirt colored Travertine that makes my floors look clean when they are filthy!
The fact I have been letting go of my obsessive cleaning!
COFFEE!
1 carb chocolate milk mix
A nice pair of slippers
70 degrees in Phoenix, the middle of November
A rainy day
My childrens school
So many other things... I will spare you the boredom of reading!

Here comes the thankful part of Diabetes life.....
Having Diabetes in the modern day, not years ago when we didnt have the same advances
Maddison being dx'd at age 6 and not as a toddler
Having Diabetes, a "manageable" disease, not cancer, MS, Lupus, etc.
Insulin pumps
Temporary basal rates!
No more NPH!
The members at Diabetesforums.com that taught me everything I know
ChildrenwithDiabetes.com forums that listened, helped me grieve, rejoice and learn
"D" bloggers, especially Penny, Scott, Sandra, Michelle, Kerri, Lynnea and Lea
Our local support group families
All Maddison's past news articles spreading awareness of Children with Diabetes
Did I already mention our school nurse?!
CGMS for people that need/want them
Rufus and Ruby, Maddison's beloved Diabetes bears that bring her such comfort
Maddison's ability to drink juice while still asleep
504 plans
Diabetes making our family more compassionate and caring every day, in every way
Diabetes bringing back the reminder to cherish each other and each new day

Our first overcast, rainy day in months is finally pouring down on Phoenix. I love the rain! Today is about to get very hectic. After school the girls and I will start to prepare all the yummy Thanksgiving fixings. I am very thankful my girls enjoy helping to prepare for holidays at home. As the usual Thanksgiving tomorrow, family will be coming to our house. So much to do, so little time. My Hannah was actually born Thanksgiving morning, November 28th at 8:38am in 1996. On Friday..BLACK FRIDAY, THIS FRIDAY.... my Hannah will be 12!! She is my turkey baby, I think that makes Thanksgiving even more special for us. I hope you all have a great holiday!! I'm sending wishes to stay free from the Diabetes demons, enjoy all the days food and festivities, think square bolus and rejoice!

Tuesday, November 25, 2008

My Poor Maddy

Sunday Maddison started on a yucky cold complete with stuffiness, runny nose and sore throat. She surely has the blood sugar to prove that this is a yucky one! My poor Maddy just can't seem to catch a break lately. She has battled strep throat, colds, pink eye, bad pump sites and tummy flu just too often these last few months leaving her immune system depleted with high blood sugars as a result of the chaos going on inside that little body. The repeated illnesses haven't given us a chance to recover from one week to the next. And of course, the stress of school hasn't helped. I think all the highs leave her more susceptible to the germs and being in the school nurses office 4-8 times a day doesn't help either. My poor Maddy, she has really had the yuckies too many times since school started this year.

Maddy's eyes are quite a bit shadowed lately. She's tired and worn from all the repeated illness and high blood sugar spells this new school year has inflicted. Just like we can see the lows in her eyes, her shadowed look has been staring back at me for weeks now. I can't even remember the last time she had continuous "good" blood sugars. Why can't we just get a break from all the sickies? I am sure that would help alot by giving her numbers a chance to stabilize before going wacky again with another different ailment.

I sit at work and try to fight off the urge to call our school nurse today. Yesterday I sent Maddison to school on a 150% basal rate. It didn't help at all. She never went under 280 until she came home to me. WHY is she high at school and not so much at home? WHY? Right now the obvious cuplrit is the cold she is fighting. My poor Maddy, feeling tired and crappy from persistent, continuous highs.

I'm not going to call....I'm not, I'm not, I'm not. I sent Maddy off today on a 200% basal rate. I know her nurse hasn't called yet because she is fine. I spoke with her this morning to let her know of Maddison's DOUBLE basal rate for her cold and she assured me she will call if she sees anything unusual. Sad, 200-280 is actually NOT unusual for Maddison these days. Precisely why I am up so much at night. I have to keep her under 150 at night, every night in order to give her back some health and time to recover from the school day highs. Nightime seems to be the only time of day in my control right now, the only time that makes sense or is easy to adjust. My poor Maddy, I promise I am doing my best to keep you healthy and feeling good!

Sunday, November 23, 2008

A reason to hope



This news release came out over a week ago. There is so much talk in the Diabetes community about wether or not *THIS* is potentially the answer to our prayers. For some reason, hearing it the first few times I didn't really think much about it. Just another "possible" break through I thought. But after another really frustrating week with Maddison's crazy highs and lows I felt I needed a dose of hope for the near future. So I tracked down the video again. This time I was already completely emotional and feeling defeated. I couldn't believe the words even after hearing them hundreds of times, "A possible cure for Type 1 diabetes". It was shocking this time, I cried and truely felt hopeful. I really believe we are getting closer.....my heart aches because I want this so much for Maddison and all the kids like her. We have reason to HOPE in the near future, we really do.

Friday, November 21, 2008

Doggie Pump?

Last night our Golden Retriever "Harlee" who is just 10 months old continually went over to the pool to drink. Maddison noticed and said "Mom, if Harlee gets doggie Diabetes would you pay for him to have an insulin pump?" Hmmmmm.....

Wednesday, November 19, 2008

I'm sorry

Look at this needle! For those readers that aren't aware of what this needle is, it is a pump site needle. Insulin pump users inject this every time we change a pump site, at least every three days. The needle is pulled out and a thin "cannula" remains under the skin. For the first entire year of pumping Maddison never complained about site changes. She never flinched. She never made a sound, and never felt but a small pinch. She has been comfortable using just a few areas for her pump sites, but now those sites have become bruised and scarred so the insulin isn't absorbing properly. A few weeks ago when we tried to go back to using her tummy she had a very painful site change. She screamed out in pain, which for her takes alot. But like other little kids, she just doesn't have enough chubbiness to find new areas for her pump sites. We have no choice but to venture to other areas, chubby or not. Understandably, she has become fearful of site changes. All I can say is "I'm sorry" and hope she understands that we just don't have a choice.

Tonight after battling high 250-300's all day, it is apparent that Maddison's blood sugar isn't responding to just an increased basal rate and hourly corrections. It isn't just a few wrong carb counts. By bedtime she is 433, (also a wrong night for pizza!) so the site must be the culprit, right? I sure hope so. That would be an easy fix, I would prefer that. I just hope this craziness isn't the after math of last weeks stomach virus deciding to WHACK EVERYTHING OUT! Now I just had to convince Maddison we need to go back to her tummy. On Sunday I had let her go back to her favorite place (upper butt) and the numbers by the second day proved to be whacky. "Do the tummy or try an arm?" "There isn't another choice." I had to say. Her tears and pleading started immediately as they have the last many site changes. Talk about just wanting to hide. I can't help but feel horrible for coming at her with that damn needle in hand. I can tell her it won't hurt, but she knows too well that you just never know. I feel especially bad tonight for it is now 10pm, she surely is tired and feeling crappy, even emotional from running in the high, high range for hours. True, once the needle hits it is in, and usually the pain is just instantaneous. But she is just a little girl that doesn't want to be poked anymore!

After 5 minutes of Maddison crying and pleading I decided she wasn't talking herself out of her fear. "WAIT! STOP! JUST GIVE ME A MINUTE! I WILL SAY WHEN!" I could wait all day and she just freaks herself out more as I wait for her to give the "Go". She gets all worked up and exhausted because of this new fear, it breaks my heart. My poor Maddison. Good news, she hardly felt her tummy site tonight, but I sure felt her fear. Not only did I feel her fear but I felt her sadness, her every tear and her relief once we knew the site change was in without a painful jab to a muscle. I'm so frustrated again tonight having to put her through all this. The 100 finger pokes the past week, her missing class for the many lows, many highs that rob her of her feel good energy. Our crazy ER trip from just a little stomach bug. I'm tired of it all today. Mostly, I'm sorry. I'm sorry that all I can say is "be brave, stay strong" "this is just a normal site change!" Well, a site change isn't exactly "normal" for anyone, and certainly not for little kids! I'm sorry that THIS is our normal.

I tried to do my own arm site the other day and I jabbed myself straight in my triceps muscle. HOLY MOLY did THAT HURT! I even had tears welling up in my eyes. I honestly flinched the next few times I had to change my site, and I am a grown woman. It makes me feel horrible that Maddison is stuck in this fearful hesitant stage because of one horrible site change. And, I totally understand. I hate that tonight she felt helpless and scared after being tormented all day with 300 blood sugars. I'm sorry that she goes through this so often and all we can say is "I'm sorry"

Maddison understands why we have to use new pump site locations. She can tell you all about absorption issues and the importance of avoiding scar tissue. She understands we just want the best for her health. We had a brief but honest talk after all her tears tonight, and all she said was "I'm sorry mom".........SHE said she is sorry that she lost being brave! I could have lost it right then and there as the tears welled up in my eyes. I had to remind her of how brave she is every day with Diabetes, and she agreed with a smile. I'm so sad that she apologized to ME.

Tuesday, November 18, 2008

Whoa!


Last week Maddison started her first horse riding lessons! She has been eagerly awaiting since her birthday in August for the weather to cool off. Another hot one today in Phoenix....87 degrees in November!


I have to say, I sit anxiously waiting for her riding time to be over. I can't say that I dislike horses, I just dont like an animal that is so powerful and can decide to kick you in the head, bite you or stomp on you just because he is having a bad day! Yeah...I guess I just dont like them! It must be some childhood trauma, I dont know. As much as Maddison loves her 2 hour lesson each week, I hate for the day to come around. I'm honestly nervous the entire time. She looks like she is about to slide off, the dust gets in my eyes, the horse trots a little too fast, the other horses make too much noise that I am sure they will make Maddison's horse freak out.... I know, I worry too much. I'm proud of myself though! I made it this far to actually allow Maddison to get ON a horse. I swear this girl has made me a braver, stronger person.

Maddison's riding instructor is an awesome lady, much like the "bird lady" from the rescue where Maddison volunteers. She is soft spoken, enthusiastic and takes the extra time to really make Maddison feel proud of her efforts. I'm very grateful we found these two inspiring women for Maddison to look up to. They each have a passion, and they have both built their lives around it. I don't think I could wish anything more for my child than to pursue her passion, whatever it may be. Maddison is always assuring me she will grow up like them someday. I have no doubt in my mind she will, that's for sure.

Monday, November 17, 2008

My turn

Sunday the tummy bug Maddison had caught up with me. I don't know what felt worse, the fever or the constant vomiting. Luckily we had the RX Maddison received for vomiting after her visit to the ER and the second dose (after 6 hours!) eased my vomiting fairly quickly. I was able to set a temp basal on my pump to avoid lows, and hoovered in the 90's the entire 28 hours thereafter. Urine ketones showed high, but blood ketones were just .3 so I did my best to sleep it off. I survivied. I still feel like death, I'm dizzy mostly, so I am going to take it upon myself to go back to bed now. I hope no one else out there gets it!