Wednesday, April 30, 2008

Home Again

Last night Maddison had a goopy eye, red......inevitable pink eye was to greet us this morning. I actually got out of bed at my scheduled time of 5am this morning to fit in my 3 mile run and weight routine. I haven't been able to get out of bed on time lately! Too bad my blood sugar was 48!!!!!!!!!!!!!!!! I have never had a number this low greet me in the morning. Never, ever. So I had my juice and crawled back into bed figuring this wasn't the best way to start a work out. Weird number, no reason. I better play it safe. I was unusually high 160's all day yesterday which was weird too. So much for starting my day as I planned! That is really irritating. Maddison was 88 with her little eye swollen shut eye. Damn it. Josh just got to bed at 5am when I woke up, so now I have to take the day off-AGAIN.

I took Maddison to the closest urgent care which was actually a very nice place. Very nice Doctor. Pink eye confirmed, there goes another $100 to medical bills and a prescription! I'm actually feeling quite crappy with a sore throat, ear pain and a headache. I am sure the headache is from the low this morning, who knows how long I was in the 40's. Two hours after my morning coffee I was 267!!!!!!!!! WTF? I never hit over 200, so looks like something is screwing with me. That's just great. I had to call in sick AGAIN for the 3rd time this month. I feel like crap and my house is a mess. Maddison is asking to take the dogs for a walk and is already bored at noon. She wants to be entertained apparently. Sorry girly, not today. Wouldn't that just be great if I end up sick and have to stay home more this month? I am planning to start giving copies of our Dr visits and Urgent care visits to my work to cover my ass. My rollercoaster blood sugar is just beginning today I fear. I can feel it already. I'm tired of feeling guilty for things such as missing work which I really can't control. Enough, I am being a total bummer, AGAIN. I think I need a nap!

Monday, April 28, 2008

1 in 300

Today Maddison had a school music concert to share with parents and family. It was so cute listening to all those little voices singing together. For some reason though, every time I attend a school function with the kids on stage as a group I end up being teary eyed and crying afterwards. It isn't the normal emotions of seeing your child on stage and being proud. I look at all those little faces and wonder why Maddison was the 1 in 300 children that are diagnosed with Diabetes each year. I see all those little eyes so happy and full of life, and I know she blends right in. But she IS that 1 in 300 and it hurts my heart. She looks the same as all the other kids but silently carries a difference. I look at each child and remember when Maddison was just like them without all this weight on her shoulders. (or is that my shoulders?) It makes me miss the simplicity we once had, the carefree life that those children have, we have no more. I worry about each and every one of those children and wonder who is the next 1 in the crowd of 300. It scares me for each and every one of them. I never thought anything like Diabetes could steal my ability to just enjoy seeing my child grow up, but some days like today it has.

Why can't I just enjoy the concert without a whirlwind of emotion inside? That makes me feel cheated. I sit there wondering the "whys" and remembering Maddison's first concert after diagnosis. I came home and cried alot that night with all these same thoughts going through my mind as I watched all the other kids around her. I couldn't get over all those cute smiling faces, then seeing Maddison looking frail and tired in comparison. Yet nobody else knew that this one little girl in a crowd of 300 children had just been diagnosed with a screwed up disease. She was just another little girl in a crowd of kids, but my heart was broken knowing she was the child up on that stage that was now "different." Back then she still didn't know what low felt like and I was a nervous wreck fearing she would pass out on stage in front of hundreds of people. I literally sat on the edge of my seat with my heart racing. I would wonder why any child has any disease? Then I would feel guilty for feeling so bad about Diabetes when some moms didn't get to bring their sick child home from the hospital. I knew we were fortunate to have a manageable disease and I knew in my mind that this was "just Diabetes" but it doesn't make it hurt any less.

Even today I look at Maddison on stage and wonder if she is low. Is she high? Would she stop the performance if she needed to treat a low? Apparently the answer is no, as I learned today. Maddison was looking a bit pale, and I figured she must be low. I was pondering if I should get up and call her off stage. Should I just slip her some juice in front if everyone or call her away? I really didn't want to have to do that. I was hoping she would reach into her pocket for a glucose tablet she has tucked away if needed. She didn't, and I grew more and more anxious as I watched the clock and watched her looking around trying to find me again. When the kids were done singing I quickly rushed to ask Maddison if she was low, and she said "Yes, or I might just be nervous" and she was 62. -Sigh-

Just when I thought I had alot of the emotions of Diabetes tucked away, a concert like today's brought so much back up. I should have been able to just enjoy the damn concert without a thought or concern in my mind. It brought back alot of questioning life in general. Questioning myself in coping with a chronic disease. Shouldn't I just see Maddison on stage and be happy? Why do I see her as any different when she is in a crowd of other children? Why does that make me so sad? Shouldn't I have moved on from these emotions by now? I guess the emotional side is just a big circle that never ends with great days, better days, really bad days and days that you just live life without a "D" thought. Those days are great. Today wasn't that day that I would have liked it to be. It was a day that Diabetes took over my mind. Tomorrow I hope Diabetes emotions leave me alone. Most days lately it does, but all it takes is one of these emotional days to drag me down for awhile. The funny thing is I always get back up! So does everyone else in life of course, day after day after day. Wow, we have a long road ahead. I had better work on my coping skills!

Tuesday, April 22, 2008

Weather changes =insulin changes

Yep, add weather to the list of what changes Diabetes. Not only our long summer in AZ bringing long days in the pool, but the heat itself causes changes in insulin requirements. Maddison had way too many lows on Saturday. I thought it was excitement from a fun filled day. Sunday she had a few lows too. Monday after school she had another low. So we changed her ratio in the afternoon since changing her basal never works during the day. That should do it! I HOPE.

I have hoovered around 70-110 the past week. So, I am not feeling my lows right now until the 40's. I have had 8 hypo's in the last 4 days! YUCK! So this morning for work I put on my medical alert bracelet just in case. I have been a good girl and hit the workout at least 3 days a week, causing the GREAT blood sugars, but alot of lows until I get things figured out. You just can't win I guess. Otherwise we are doing good, feeling great! That's about it for now, nothing interesting to post. Nothing upsetting, nothing I am pondering these days. Just Diabetes in the back seat in life where it should always be!

Thursday, April 17, 2008


Maddison's A1c today came in at 6.8%!! Yeah! I figured it had gone up a bit from the last, but 6.8% is still f-a-b-u-l-o-u-s!!! Of course the nurse mentioned that 6.8% is on the "low" side of where they want most kids to be. (Our Endo shoots for 7-8%)But, she said since we have good "control" then they are fine with it, which makes me wonder why they think we have good control? They don't download meters or pumps anymore so how would they know if Maddison's A1c is based around alot of lows? Well, it isn't anyway, but it still got the wheels turning inside my mind. I guess you always think an A1c is never good enough. Too high, too low. It made me wonder if maybe she is having too many undetected lows, even though I know she isn't! God I hate the doubt that this disease inflicts upon us! Her A1c is in line perfectly with what her meter averages so I am sure she isn't having too many lows but my mind tells me to make sure! Every few days she has some lows, certainly not every day and they are typically 70's and 60's, nothing lower or scary.

We have been sitting very well at night, but I still would like to stop checking her blood sugar 12 times a day which is our average right now. I think that is just way too much. Do we have a great A1c because Diabetes is running our life? Are we working too hard on numbers? I don't personally think you can ever work too hard for good numbers. I don't work all that hard to get good results (right now anyway) we just seem to be at a good place. The hard work comes just from it being so damn constant!! Our typical finger pokes for Maddison are:

5am when mom wakes up

(sometimes again at 6:30 am if the 5am was corrected for a high, which isn't likely)

915am at school before recess

1045am before lunch

1230pm after PE only on PE days twice a week

215pm when she gets home for a snack

5pm before dinner

8pm before bed

check again while she is sleeping if there is active insulin from a snack before bed

You have to recheck anytime she was too high or too low going to bed


**gotta check if she feels low. If she is low you have to give carbs and then re-check. If she is STILL low, give more carbs and RECHECK AGAIN! Gotta check if she is angry or grumpy. Gotta check if her tummy hurts, head hurts or she is tired. Gotta check before or after swimming. Gotta check before a walk.*** You get it!

I really do shoot for just checking Maddison about 8 times a day. Life happens. I talked to the Doctor about this today and she assures me to just keep doing what we are doing. I know, I know, I know! I feel guilty for our A1c because I think doing this well means I am working too hard at it! Too many finger pokes, too many hours of sleep lost. Too many "you have to wait 15min to eat that Maddison" too many thoughts and lost energy on Diabetes management. I guess Diabetes never just lets you feel good about how you are managing, even with a really good A1c. I still feel like it isn't good enough, not that I want it to be lower, but now I worry that Diabetes takes too much of our every day to get there.

Tuesday, April 15, 2008

I spoke too soon


Yesterday I mentioned that I haven't made adjustments to Maddison's insulin for about three months now. I spoke too soon. Last night was the 3rd night that she had an 80 point rise in blood sugar from Midnight to 3am. Somewhere in those hours something may have to change. I suppose tonight I will have to test some basals, which really sucks because I feel pretty crappy and really need sleep right now. I have a headache, sore throat and just feel icky. TIRED. Very tired. I even took a two hour nap yesterday when the kids were in school. I never take time to do that but I was speeding down a scary slope of burnout and couldn't deny myself any longer.

The school nurse called before Maddison left school for the day to inform me that she has stayed in the 260-280's all day. That never happens. Uhhhhhhhhhhhh. So what are we looking at here? Are we getting sick? Weather changes? Bad insulin from being out in the hotter AZ days? Wow, maybe that is it! I will start with changing the vial of insulin. Wishful thinking probably. Remind me to never talk about how consistent blood sugars have been. Its a sure set up for changes ahead.

After school Maddison went swimming for about 1.5 hours......148 before dinner finally but hit 408 an hour later complaining of being "SO STARVING"....I'm not sure if she missed too much basal in the swim time, but I decided to just pull the site in fear of the bad insulin. When we pulled the site from her tummy it gushed blood everywhere and continued to bleed a few minutes. Perhaps that is the culprit. With a nice new site in the upper Bum the pump suggested a 1.4 correction for her 408......and we shall see how the night time goes. I am so glad I left work early and got to take an hour nap! Long night ahead I am sure. Surprise Surprise.

Monday, April 14, 2008

Type 1 Awareness Day

Today, April 14th is Type 1 Awareness day. Being so, I encouraged Maddison to finally tell her friends at Girls Scouts about her Diabetes tonight. She began by showing her picture with the puppy in the magazine and explaining how we donated puppies to raise money for a cure. She did really well, but the other girls seemed bored to death and didn't have any questions. I showed them my pump, chatted for a minute and that was it! I am happy that we have her Diabetes out in the open now and Maddison is looking forward to me being able to leave her alone with the group for the hour and a half meet each Monday night. I will give her my cell phone to call me if she is low, and she will call me if they have a snack. She can use her pump herself, so I guess I will have to brave this HUGE step and fight back my own fears to let her take some responsibility. She has the troop leader of course for all verifying of dosing..... and you know I will have her well informed by the time I actually leave Maddison the first time. :)

So my part in raising awareness today is to educate about all the differnt things we must consider when managing Diabetes. It isn't as simple as counting carbs and injecting the right amount of insulin, and most people think that if you have an insulin pump it does all the work for you. The insulin pump is managed and programmed by the user. It does nothing unless you tell it too. It does not check your blood sugar or dose automatically when we eat. How the heck would it know how many carbs I am eating? The main reason a person chooses the pump is becuase (for us)it can dose tiny amounts of insulin (1/10th of a unit) compared to syringes that have a minumum half unit increment. When you have Diabetes you must consider all these factors, every day with every dose........this is probably boring to most of you, but as far as awareness goes....this is what Diabetes really is......

The amount of insulin it takes to lower your blood sugar (How sensitive are you to insulin?)You must know how much 1 unit of insulin will lower your high blood sugar.
My sensitivity is 1:200 during the day. That means 1 unit will drop my blood sugar 200 points on average. But at night my sensitivity is 1:70!!! With a pump you can program an hourly range in which your sensitivity to insulin changes. VERY important becuase sensitivity can change all hours of the day. Most people are more active during the day and obviously not when sleeping, so insulin will effect you differently at different times of day. When children have growth spurts or are sick (especially with ketones) it is common to have to change your sensitivity dramatically.

Carb Ratio-
Maddison's carbohydrate to food ratio is 1:13 in the morning, this means for every 13 carbs she eats she gets 1 unit of insulin. This is programmed into the pump, so if she eats 36c I tell the pump by entering 36c and it will give her 2.77 units etc. You can't dose with this same accuaracy when using syringes. Carb ratios can be different for different times of the day (morning meals usually require much more insulin because the body is resistant to insulin upon waking) Maddison's lunch ratio is 1:26 and then changes to 1:28 for after school snack time, and then again changes to 1:26 for any food consumed after 5pm. It takes ALOT of recording blood sugar results to figure these things out!

Basal dose-
Figuring out your basal rate can be the hardeset by far! A Basal dose of insulin is the "background" insulin that your body needs when you are not even eating. Your body always needs insulin, not just when you eat. It is constantly being given in tiny amounts in a normal healthy pancreas. The insulin pump works the same way. When you don't have a pump like us, you must inject 2 different types of insulin. One for food, and one for your "basal" insulin. On insulin shots the "basal" dose is given in one dose and is expected to slowly dissolve and last 24 hours. It can be really hard to manage, and dissolve unpredictably for many reasons. With an insulin pump we are able to micro manage basal amounts as needed from hour to hour. My example is Maddison. This is what her pump doses each hour, for 24 hours each day..... automatically.... as programmed by me (you know, the one that knows exactly how her body works, LOL)

Midnight thru 1:30am (.05 per hour)
1:30am thru 7:30pm (.10 per hour)
7:30pm thru 11pm (.15 per hour)
11pm thru Midnight (.20 per hour)

Maddison requires much more insulin at night when the body is resting because she is a growing child. All hormones are most active when at rest and your body is rebuilding and repairing, resting for another day. How the Hell do you figure out what rates to program? The best way is to fast with no food to determine if the background "basal" dose is correct and not causing highs or lows of course! What a pain in the a** I tell you! If you have the correct amount of insulin being dosed each hour then your blood sugar should remain within 30 points of where you started testing. You then check your blood sugar every hour to see where a change needs to be made, if any. If your basal amount is incorrect, you will see a rise or drop in blood sugar. It is amazing to check your child in at bedtime with a 140 and then to see a 386 at 3am. That would mean you can change something somewhere to avoid a rise in blood sugar.....but what do you try to adjust first? Sometimes it just happens for no reason. Sometimes it happens one night, not the next, and then reappears out of nowhere for another 2 days! Then guess what!? One night it will be a low.......that is Diabetes. Usually things stay stable when you get the doses set right, but that doesn't always last for long. Your basal requirements are always changing as a child. Right now I haven't made any changes for Maddison in about 3 months. That is the best record so far. This, to me, is why you micro manage with a pump. A pump can change the basal rates hour to hour to avoid (especially nightime) lows and highs, keeping your blood sugar stable. You cant adjust hour to hour without a pump. It is alot of work to get basal's set right. It is alot of finger poking, and alot of figuring out what to change first. It can change week to week, with illness, stress, PMS, growth spurts or who knows what else! And it does change, ALOT.

Target Range-
A target range is programmed in the pump to tell it where you want your blood sugar to be. For Maddison during the day we have it set from 100-130, but at night it changes becuase it would be dangerous if she were to drop suddenly. Her target at night is set for 130-160. If I check her at night and she is too high at 348 I tell the pump she is 348 and it calculates a "correction" according to her programmed sensitivity for that time frame. It will show me that suggested amount and I can approve it or change it. On a good day she comes down perfectly in range, on a "bad" day we correct it several times until it is finally right. On really BAD days due to illness, stress or growing it may not come down at all. Or it may come down too much causing a low. With Diabetes every day is different. Most days can be predictable, but alot of days never make any sense.

The pump also keeps track of how much insulin is active or still working. Maddison's insulin for food works to lower her blood sugar for 3 hours on average. If she is low I can enter that number from her meter into her pump and it will tell me .8 is still active for example. I can then base that on how many carbs she will need to stay in range. If she is high I can enter that number in the pump and it does the math for me to determine how much more insulin she needs to get back into good range.

The pump does not however have any idea that foods like chocolate, ice cream, french fries and pizza are crazy. Foods with alot of fat or protein digest very slowly (but every person with diabetes is different!)So if your insulin is done working in three hours and you still have food digesting there will not be insulin working to help the highs after 3-8 hours later. You can set a "dual wave" bolus, and extend a percentage of your insulin to be given over a specified time. We can give 60% of the dose up front and 40% over say.....2 or 3 hours to avoid the highs later. An amazing feature of the pump! It keeps track of everything I dose, and for sleep deprivation that is a must.

This is my every day in managing Diabetes for 2. Just when I think I need to make changes somewhere, it all settles down. Just when I think a ratio is off, it is actually a basal amount. You only learn by changing something and waiting to see if it works. If it doesn't you try again. Change something else. Change something back. Try different food combinations, wonder if the insulin is bad. Wonder if the pump site is bad. Wonder if there was an air bubble in the tubing. Then you wonder if you forgot to count something, or do you really just suck at carb counting? Being off by even 5 carbs can be HUGE! I am always analyzing the blood sugar situation.

I hope that you actually finished reading to this point. I know it must have been boring for anyone that doesn't have Diabetes. Alot of talk that doesn't make sense I am sure, and you probably really dont care to even hear all of this. But I appreciate the fact that you care enough about Maddison and I to try and understand how complicated Diabetes is, and why I am always seemingly obsessed about talking about our new lives with this screwed up disease. It is right there with me in so many ways. It can be overwhelming at times, and it can be confusing. I hope that you are now aware of what I have to consider every day just to keep my child (and me!) healthy and free of complications in the future. I know I have forgotten to mention so much. The emotional side wasn't even one I was going to mention today. Time for me to get to bed! I had to sit down tonight and do my part to raise awareness, so there ya go!

Friday, April 11, 2008

"What if they never find a cure Mom?"

Well...........I replied by saying we would just keep living life the way we are and stay strong. I never thought Maddison would really ask that question. As much as you want to believe in a cure, there is the part of you that really doubts it. A huge part of you some days. I guess I just keep believing for Maddison. Anything is possible, right?

I do know that technology is incredible compared to years past. This makes me believe in better treatment, look at our insulin pump for goodness sakes! We can dose increments of .05 compared to syringes that only dose as little as .50. We can set temporary rates to avoid lows, or fight unusual highs. We have the ability to increase and decrease our basal dosing every half hour if needed, especially helpful at night when hormones reek havoc on our growing children. That itself is amazing and I beleieve in alot of the studies that are now active.

We found out today that we will be meeting with Senator John Kyl or Travis Fleet. We don't have a day set yet, but sometime next month. I have until then to work on Maddison I guess. I know she doesn't want to do this, but I am hoping I can give her something in exchange for her promise.....maybe Horse back riding! She has been dying to go, and I bet she can't say no to that!

Tuesday, April 8, 2008


Today I was reading about misdiagnosis stories in the forums over at Now, believe me, I am fully aware that this happens ALOT just like our experience with Maddison. But Maddison was found very early on. Her ability to stay awake, eat or be "normal" hadn't yet been taken from her. So many kids were taken to the doctor numerous times. Did you know that 1 in 3 kids are life flighted to the ER because they are in such extreme ketoacidosis? Some of these kids were literally near death and the Pediatricians completely overlooked a group of symptoms, not on one occasion, but over many visits! Stories such as these make me want to scream. They make me physically ill inside. Serious re-education is needed for any Physician anywhere on this planet if you ask me. Here are some quotations from horror stories of other parents......

"I asked her pediatrician (nurse practitioner, Navy hospital) to compare her weight to her previous appointment back in August of '07. She said there was a ten pound loss, but not to worry. I mentioned checking for diabetes because she had been drinking tons of water and eating EVERYTHING in the house but was told "...I am 95% sure it's not diabetes..." by the ped after she asked a few more questions. Okay. I was fine with that. But not for long. I knew something was wrong. Kathleen continued drinking and peeing A LOT and then other stuff alarmed me. Her hair and skin was so dry, she was losing hair, she had pains in her legs and (a few days before dx) her stomach, and although I at first figured she was just being a teen, she was um...GROUCHIER (not the word I would've used ) than usual.She had another follow-up appointment on March 19 and during that I again mentioned a blood test for diabetes. I told the ped that I respected her medical knowledge, but she needed to respect me knowing my child, and something wasn't right. They took blood that afternoon and said they would call me. Next afternoon we got a call saying her BS level was 'elevated' and we needed to come in early the next morning for a 3-hour glucose test. We go into her office and are told that Kathleen's BS level is 395 and she is diabetic. The ped keeps apologizing over and over for not listening to me."

"3 weeks after our original appointment with the Pediatrician she started with the flu symptoms throwing up and drinking ALOT.. She went to bed the next morning at 5am on 1-19-07 she went from looking like an 8 year old to 90 year old women. Her entire face was sunken in, she looked horrible.. I put her in the car with her 3 year old brother and rushed her to Howard County which is a part of Johns Hopkins. She was DKA and BG of 950. She was then transported to JHU in the PICU and can I tell you those doctors about 7 of them surrounding her was LIVID that her Pediatrician did not do a urine sample on her or blood work three weeks ago. They immediately called her Pediatrician who was on vacation and left her a message of Brittney's diagnosis. When we returned from the hospital 5 days later her pediatrician called me on the phone to apologize.. APOLOGIZE I said my daughter almost DIED because the lack of a simple urine/blood test which they would have caught it sooner."

"Bella was dx'd at 22 months old. She had been sick for about a month before we FINALLY got a doctor to check her for D. It all started with a bad diaper rash.... we just couldn't get rid of it. So we brought her to her pedi's office. They gave us a prescript. and sent us on our way.... (I DID explain that B had been acting off lately, drinking a lot, waking up in the middle of the night...)after about 5 or 6 days of antibiotic cream, her rash still was not gone, so we went back to the pedi's office. They checked her again, mentioned D, but said that they didn't want to put a catheter in because that would be too invasive, so we should keep an eye on her, and keep using the cream and the rash would go away.... (OK - I'm not a doctor, so this sounds oK to me....)A Few MORE days go by and she's practically passing out after waking up from a 2.5 hour nap, drinking a TON, cranky, tired, clingy, looks horrible, etc....So we go BACK yet again (can you tell I'm not too thrilled with our pedi office?!) and I'm like "do whatever you need to do to find out what's wrong with my kid!" In comes the Dr, does a quick finger prick, puts cottonballs in her diaper, and says... "Her blood sugar is high (599) and she is diabetic. I want to check those cotton balls for ketones, and then we're going to send you to Children's hospital" Here I am freaking out, yes because my poor baby is sick, but more so thinking "HOW HARD WAS THAT?!?!?!" why could this have not been done WEEKS AGO?!?! They had mentioned it, but the nurse didn't want to do it!!!!!!"

"In mid December 2006 Zeb seemed cranky and just not himself. That continued and I thought it was a phase, 18 months old and cranky is really not unusual. Then just before Christmas I commented that he was getting so tall 'look how he's thinning out'. (he did grow out of all his long pants about the same time) Christmas day he didn't seem great but okay, but then a dinner he threw up every time he tried to eat, it was like anything solid made him gag. Took him to the doctor the next day where he was diagnosed with a double ear infection and put on antibiotics. It seemed like he felt a little better at first but then after being on medicine for 5 days he was still acting sickly so I took him back. Doctor said we needed to try a different antibiotic as this one wasn't doing the job. I mentioned how skinny Zeb looked, they weighed him and said he had failure to thrive. I knew this wasn't right, he had been growing and plump up till just a few weeks ago, but they didn't listen at all. He seemed a bit better for a few days and we thought maybe it really was just the ear infection, maybe he wasn't walking because he was dizzy from the inner ear issues...maybe. Took him back the first of January, ears were clear and yet he still was not walking and seemed to feel crummy. I took him back two more times over the next 2 weeks listing symptoms including peeing through diapers, no energy, eating tons one day and nothing the next, cranky, not walking at all, drinking all the time. I was put off again and again as an overly worried mom (not at all me really). I took Zeb back on January 16 because he seemed so sick and sleepy. Waited an hour to be seen for 5 minutes and told that he 'likely picked up a stomach bug from big brother/sister' and to 'go home, give him pedilyte and stop worrying'. I left that place in a rage and crying so hard I could hardly breath. I KNEW something was wrong with my child and this dumb@$$ doctor had sent me away like I was some hysterical fool. I came home and called doctors offices looking for anyone who would take us right away. I got an appointment with my niece's pedi for 6 pm. Zeb slept most of the day. As soon as she took us back she started talking to us and I think now she knew right away what was wrong. In 15 minutes she knew more about Zeb than the other doctor ever did. She left the room to talk with another doctor there and they came back together and told us they thought Zeb had diabetes. And I swear my first thought was 'that is the stupidest thing I have ever heard, of course he doesn't have diabetes'. They had just moved into their new office and couldn't find a meter anywhere but none the less called the hospital telling them to bring us straight to ER. Meanwhile the nurses checked Zeb's blood sugar which was 356 fasting and I remember asking what should it be, I had no idea. He was moved to the PICU and after trying both hands and arms ended up with an IV in his neck because he was so dehydrated. He was in PICU for 3 days and 2 more on the peds floor."

"DS's doctor didn't say either way what he thought it might be. He sent us home with a script to get a urinalysis but DS would not urinate into the little cup. We went back the next day for a fasting glucose test which showed BS 87 - normal. We got those results on a Saturday. Took DS back to dr on Monday. He said it's not diabetes but can't tell more unless we can get the urine to run tests. Also said to take DS to ER if any other symptoms presented. That night at dinner, he started shaking and he vomited. ER doc did CT scan, chest X-ray since the fasting BG test came back normal. When those were normal, he rechecked the blood and the BG was 957. An ambulance ride to the PICU at midnight, then 3 1/2 days in the hospital.

Believe it or not, this is happening every single day. Mis-diagnosis of a disease that has classic symptoms.

-new onset bed wetting
-yeast infections
-weight loss
-fruity smell of urine or breathe

What did these Physicians not see? Is it so hard to do a QUICK urine sample? A quick finger poke? Why do they think it is so uncommon? 1 in 300 are diagnosed by age 12. Yes, YOU CAN BE DIAGNOSED at age 1, 2 or 3. I am simply disgusted today in reading the suffering some of these children endured before a "trained" Licensed Pediatrician decided that MAYBE their symptoms pointed to Diabetes. Absolutely disgusted.

Sunday, April 6, 2008

Why we do what we do

This is a blog post from, and it just about sums it all up!!

Why we do what we do as parents

She knows

Tonight at bedtime Maddison was 82. Perfect number for most people, and most times, but too low for a child at bedtime. I gave her some juice and she knew enough to question. "Mom are you sure I should just drink half?" Maddison is taking responsibility for her own care. She can recognize when she might need more carbs because she was so active before bed. She knows that half a Juicy Juice box is just 7 carbs. She knows that she may need some PB or fat and protein to stick with her and keep her blood sugar safe through the night. How many kids think about being "safe" to go to bed at night? Maddison does, every-single-night. She knows.

Maddison then heard me setting the alarm clock. "When are you getting up Momma?" I told her at midnight. "How do you know that is the right time?" she asked me. I walked to the bed and sat beside her. I told her that there are some things I do just because I know I have too. I told her that I know I have to check her and myself at midnight every night so I can make sure that we are staying healthy for sleep. I tell her that if we are a good number to sleep then we are healthier all night long and in the morning to start our day. I know that she understands this, but I also know that she knows the real reason I check her every-single night. All night. That usually means at least every 3 hours, around the clock. If you question the importance read about "dead in bed".

Maddison knows about her Grandpa. I never hid from her the cold truth about why my Dad was in such poor health. Little did I know that Maddison would be diagnosed with the same disease. If I had known, I would have withheld and sheltered the truth with every bit of the ability within me. It was too late by the time Maddison was diagnosed. She knew. She knows that Grandpa suffers complications from Diabetes. But does she know that this is NOT Diabetes, but its complications? My dad already suffered a stroke, blindness, amputations and kidney failure.Does Maddison feel the end result of Diabetes is this prognosis? Could any child understand that although you have this same disease this will not be what happens to you? Is she scared? What does her 7yr old mind really think about all this? How sick is it that she just can't think of the normal kid thoughts and dreams in life?

Maddison and I have been even closer since her diagnosis. I hear her say "right mom?" at least 100 times a day. I have become her reassurance in a world that she feels has no promises. We are stuck in a pattern of "Mom knows best". She is always questioning the carbs or insulin dosing from Hannah, Dad or the school nurse. She knows that I am the main care giver and the most diligent. No child should ever have to question how they are being cared for, but Maddison does. She knows. Maddison knows that she will slowly take over the Diabetes care. The carb counting, the dosing, the managing numbers. Highs, lows, adjustments, exercise, PE Days. She knows that one day soon this Diabetes is hers, and not mine to manage. I think that until she is at least a teenager I will always want to be the responsible person. I know many parents that have children diagnosed at age 3 or 4. Their kids do alot of self care by age 6 or 7. I am not sure I can give this disease to Maddison at that age. For now Maddison's Diabetes is my disease to manage. She doesn't need the responsibility of carb counting, remembering to bolus, remembering to check her blood sugar. She is 7. She will be responsible for this disease the rest of her life. She needs to know that no matter what, I have the control and there is nothing she should be worrying about. Mom is in control, and mom would never in this lifetime let Diabetes defeat you. Not at midnight. Not while I should be sleeping. Not while you are testing at school. Not while you are trying to just be a kid. Maddison knows that I am all over this disease, and she will know that she must be one day too. Now is not her time like so many parents tell me. Her time will come. She is just 7 for Gods sake! She will know in the years to come what she has to do. But for now, she knows Mom is always right here.

Friday, April 4, 2008

Being recognized brings tears

Maddison has been quite the famous girl lately. She made front cover of a magazine for the City of Avondale simply because of her enlightning smile. She was chosen for the cover by attending a garden planting event where her Aunt Christina runs the Healthy Avondale program. For this she is so proud!

Then there is her full page photo featured in the AzSociety magazine, a follow up article from The Promise Ball when we donated our puppies. Maddison is precious in her evening attire and curly up-do, holding a puppy with pretty painted nails. She is quoted saying why she wants a cure for Diabetes "I don't want to poke my fingers anymore". This, is the photo that brings tears to my eyes. It was emotional for both Josh and I too see her pictured there. I'm not sure why exactly, we were feeling proud, and then a bit saddened. I never really thought of this her way. Maddison said to me "to bad my picture is there because I have Diabetes". And that made my heart break for the 100th time this week. I think that she is starting to feel resentment of the Diabetes, in fact, I know so after her last few days of varied emotions. I pray to God that Diabetes never "defines" her in her own mind.

Maddison mentioned the other day that she "doesn't want to have Diabetes anymore" which is something she has never said before. She has complained about things associated with care of Diabetes, but never complained of "having Diabetes". Let me explain the difference....finger pokes hurt. She has never complained that she doesn't want to poke her fingers although we do so at least 8 times a day most days. Injections hurt, she never complained about having to have an injection, but certainly that some of them have hurt. Site changes can REALLY hurt. Stopping your play to check your blood sugar hurts your free spirit. Being denied a snow cone from the ice cream man makes you feel different from all the other kids.....yep, she has never before complained about HAVING Diabetes. She used to see each of these things as other irritations, not Diabetes.

I have heard Maddison say numerous times that she "likes" having Diabetes. Why you ask? Well being the physically tough girl that she is, she doesn't even notice the pain associated with needles and pokes. She is able to leave class many times a day to check her blood sugar, (which is a relief to her short attention span) and she can "get out" of a tough spot in her day if she is high or low, or if she just wants to claim that she feels that way. Not good, I know. She likes the Skittles before breakfast because she is low. (of course she is tired of juice by now) She likes the fact that she can choose a field trip with Mom or Dad instead of attending the one at school when there is no one to go and count carbs and dose insulin. But lately she is finally realizing that Diabetes as a whole really sucks. Realizing that all of these irritations are one thing called Diabetes. She thinks that people "know her" because of it. In her mind that means they "like her" just because of Diabetes. The entire school knows Maddison since she was diagnosed. I see lately that doesn't make her feel so good anymore. At least not in her heart. She doesn't want to be known for her Diabetes or because of it..... and that is killing me inside. She has been crying alot lately about school again. She says she doesn't have any friends except for 5. She is upset because last year before repeating 1st grade everyone knew her and loved her BEFORE Diabetes was diagnosed, and this year they all know her BECAUSE of her Diabetes. Not her words, but Mommy radar. It sounds to me that she is feeling like there is no one that is her true friend. She says that they just like her because they get to walk with her to and from the nurses' office. She is seeing herself in these publications lately (including the JDRF monthly newsletter as well!) and feeling bad about the "reason" she is being recognized. I'm not sure I know what to say about that. It makes me cry. It makes her cry, and I don't think this being recognized in the spotlight has been good for her confidence as one would imagine. I hope that she can overcome these feelings and quickly see that she is also recognized for helping fight Diabetes, one day and one opportunity at a time.

Although Maddison is hurting right now because of her recognition, I am hopeful for many more opportunities to arise from this. We are scheduled to meet with a Senator (not sure who yet) for the legislation review and "Promise to Remember Me" campaign next month. Maddison does NOT want to attend. We were asked to simply answer his questions on what our lives with Diabetes is like. Simple enough, maybe not for Maddison right now though. I feel empowered to actually speak out and be the voice of families everywhere that just want the world to know that this disease IS as horrible as the many others and deserves attention. This isn't about dieting and excersize, giving an injection and you are good to go. This is about a disease that effects millions of people worldwide, Type 1 or type 2 has no signifigance. The Senator wants to focus on Health Care costs of course, so listen!! Last years health care costs in the US accounted for $132 billion dollars!!!!! Is a large part of that based on lack of education and awareness of managing the disease? Of course it is! So many people are "ashamed" to have this disease, that is what REALLY bothers me. It makes me naseauted to think that my daughter could feel this way based on comments from other people or the media and news reports. The misconceptions are amazing. How did I or my child cause her pancreas to stop working? Did other children cause their Leukemia? Are they accused of causing their disease? But people with Diabetes ARE accused of this, even by uneducated Physicians!!!!People have other organs that fail, Diabetes is in fact a FAILED ORGAN IN YOUR BODY!!! It is time that people STOP THINKING THAT WE CAUSED THIS FUCKING DISEASE. Time for people to realize the complexity, and why so many people suffer complications!!!!! It is NOT an easy disease to manage!!! ESPECIALLY IN A GROWING CHILD!!!

-Whew!- I am about to get a bit off track........

I feel empowered because our situation is partly unique. I am a person with Diabetes and also have a child with the same disease. Not really so uncommon anymore, but I see my Diabetes as a "priveldge" in caring for Maddison. I understand what it feels like. Every-single-aspect of the disease I can relate to. Phyisical, emotional and everything in between. Now I just have to find my way in making a difference. I have to help Maddison live her life as "Maddison" and not as a person with a disease. Maddison has Diabetes, Diabetes does not have Maddison. Although I think that Diabetes will play a large part in who Maddison becomes, it does not make her who she is.