Monday, January 28, 2008

$9000 closer to a cure

The Promise Ball and Auction was a fabulous time on Saturday! Our first little girl puppy that we donated brought in $4500 in the Auction for JDRF. Our second male puppy went for the same $4500!! I was so excited that our family could help to raise $9000 and be that much closer to finding a cure for our children!

We were so rushed on Saturday getting ready for the Promise Ball that we didn't even have a chance to take good pictures! I am so bummed! I spent WAY too much money on the girls hair (prom up-do's) and nails to miss the pictures! That makes me so sad! I hope the ones we got will turn out better when printed. It was interesting to see all the wealthy high status people at the ball. Most were pretty friendly. Most of them were drunk I am sure, thanks to the beautiful open bar. The resort was gorgous, and so were all the evening gowns. I can't imagine having $50,000 (or way more!)to drop on charity and auction items. We hung out mostly in the volunteer area and helped anway we could.

When it was time to go up on stage in front of the 1,000 guests Maddison had a bit of stage fright! She nearly cried, but I just whisked her on stage. She did great. You really can't see the crowd when you have those lights shining in your face! The host asked me to tell my story.....I had to just speak from the heart. I was surprisingly comfortable. Hannah smiled and answered some questions too. Then Maddison decided she LOVED being on stage and after we were done she wanted to go back ON stage! LOL. The girls got to feel like fancy princessess for the day, and so did I!! I never wear a dress! We all could have done without the fancy shoes that left our feet screaming in pain though. We stayed late and enjoyed some cocktails in the end while the girls ran around trying to find some way to offer their help as volunteers. I am grateful we were able to experience this event with JDRF. It was truely a night I will always remember.

That night, was even perfect for numbers! Maddison went to bed at 83 and becuase I was noticing her going high at night lately I decided to leave it and check in 2 hours. Then she was 83 again! That never happens! Then she was 86 at 4am and 88 for the morning breakfast. WOW! How could that happen? Of course it didnt the following night and the highs returned. But I am glad our family had one perfect night at the Ball, and perfect numbers that night to top it off. It has been a l-o-n-g year, and we so deserved this night!

Thursday, January 24, 2008

Whirlwind of excitement

I haven't had the chance to post about our exciting news! Our family is donating one of our puppies to the JDRF Promise Ball Charity Auction. Our gift was accepted last week, a spur of the moment idea... and we have been preparing for the ball ever since. This is a black tie "Ball" with every detail imagineable. We were asked to attend the event this Saturday, so me being a very casual, shy person.....I am a bit anxious. I am not really nervous because this is for Diabetes, something true to my heart. But we are so excited!

We will be called on stage as a family as the first Live Auction promotion. We will be asked some simple things about our lives with Diabetes and how long we have been "keeping the promise" to help find a cure. They are impressed with our family because they don't often have Type 1 families donate to this "Elite" auction. So we are very honored to be considered a special family being Maddison and I both have Diabetes. Our timing just happened to be right with the puppies being born, so we are truely lucky to be able to make this donation! The puppies are still only 2 weeks old so the winning bidder will recieve a promise certificate and photo for 1st pick of a female from our litter of 8 puppies. JDRF sent out a photographer on Tuesday to have video and photos taken for playing while we are on stage promoting our puppy and speaking our story. We have been out all week buying our formal attire, Josh was fitted for his Tux, and I get to pamper myself tomorrow! I have an appointment for hair, nails and a pedicure.......I have NEVER had my nails done, or a pedicure! I always do those myself becuase I am too cheap! Not to mention I want to rip the nails off in a day or two :) So, we will be excited to post pictures here soon! I made an appointment for both the girls to get their hair and nails done before the event Saturday. It is at a special little girls salon......we so deserve this night as a family! It has been hard the past few years! So watch for pictures of us all in our formal attire, a sight never seen before!

Friday, January 18, 2008

Diligence x's 2!!!

I'm so happy to say my A1c was 6.0% WOW! I will take that any day!! Then I asked my Endo about the home test A1c and the reliability. She said they are "Horrible" and she really stressed that word. So, considering Maddison's 6.6 A1c came from a "home A1c" in the office instead of the lab, it makes me wonder. My endo said they can vary as much as 1% YIKES!! I prefer to think Maddison's was accurate!

Hannah has been showing alot of Diabetes symptoms lately. I know every parent with a "D" child wonders about the other children being diagnosed. Being our genetic link in our family, I am concerned-again. I always thought Hannah had symptoms even before Maddison was diagnosed. I suspected Hannah, not Maddison. So off and on Hannah will be irratable after eating, especially sweets. (but she is 11) She has been more thirsty lately. Stomache aches, peeing more than usual and then there is this morning. Hannah had an accident. She hasn't in over 2 years though it was common before. So when she came to me and said she had an accident at 5am, I lay there stiff as a board. I thought OH SHIT! I had to break my promise, and get out the meter. She was 103. That is a bit concerning. <100 is normal, 110 or more fasting is a diagnosis.

So, what do you do? I feel that post prandial is the first to go in our family. Do I do a random check? Do I ignore it? Do I try one of the Home A1c's with the bad reputations? Do I just wait and see? Do I limit carbs and sweets to rest her pancreas? At this point there is nothing I can do. She was 103 not 403. So I guess I sit and wonder day in and day out. Everytime I get past the worry with Hannah something like this happens to start the concern all over again. I hate Diabetes. Even with a 6.0 and a 6.6 this month, I hate Diabetes because it is so silent. At least if Hannah was 403 I wouldn't drive myself crazy with wonder. Of course, I never want to see Hannah being diagnosed. Never, ever in this lifetime. But the worry and wonder is almost the same stress as being diagnosed. I hope these concerns for Hannah leave my brain QUICKLY so as not to ruin my happy high of good A1c's!!!

Thursday, January 17, 2008

Diligence has paid off!

Maddison had her 1yr follow up today, a month late. It is hard to get an appointment with a practice that is so overwhelmed with patients. I was astonished to hear Maddison's A1c is 6.6%!!!!!!!!!!!!!!!!!!!!!!!!!!!! I wanted to cry. I couldn't stop smiling, my heart was pounding with excitement, relief, and wonder......I wonder if her A1c is so good because of too many lows? Why did that thought have to ruin my happiness? Is it ever good enough? I actually don't think Maddison has had too many lows. A lot of times she ends up in the low 90's to 80's before her next meal, and that is ideal, though her range acceptable is 120-150. She has a few lows a week, not serious, (KNOCK ON WOOD) though she has had at least a handful of bad lows under 50 since her last A1c of 7.5% in September. But, that 7.5% was reflecting numbers from when we started the pump and ran high for 2 months because I was too cautious in making changes. The fact that me questioning such a good A1c was irritating and it invaded my happy moment! I have worked so hard for this 6.6%!!! Diligence has paid off, proof is in the numbers, and no, the Endo and I don't believe it is due to too many take that Diabetes! Nice try! Now, I just have to see what my A1c is tomorrow for my own appointment! YIKES!

So today I am ecstatic. The Endo said we are doing "phenomenal" and I am on cloud 9. I couldn't be happier!! Problem though, is that now I will expect nothing higher than this in the future, and that really isn't realistic with Diabetes. I keep telling myself that so as not to beat myself up in the future when A1c's are higher, maybe ALOT higher. But for now, sleep deprivation has paid off, and I have kept her in good range over night, which really is 10 hours of her day, half of her A1c result really. I am so proud that diligence has paid off in the numbers!

Wednesday, January 16, 2008


Maddison went to bed at a 180 last night, I corrected that giving .3 which always does the trick lately. Not last night! At midnight she was 324, what the heck? See, now THAT is why I ALWAYS check 2-3 hours after the correction is made! That was very weird. I made sure there were no bubbles, no food from earlier affecting her, site looks good, insulin was new, right pattern is set. Just weird.

Endo's will tell you not to check over makes me so mad! I would NOT want that 324 hoovering all night and starting our day! I will take the sleep deprivation thank you very much. Do they think Diabetes sleeps? I mean really? If their kid had "D" would they not check at night? Would they want them to sit there all night at 324? Hello? They tell us (and we know) that pump failure can cause Ketones in a matter of an hour or so. Then why wouldn't you check at night when your kid sleeps for 10 hours!!?? So, now I am wondering if tonight will bring the same thing......just when I had the basal set right for a whole month! Talk about frustrating. No wonder I never get more than 3 hours sleep in a stretch! I am always, always having to increase or decrease something!

Tuesday, January 15, 2008

Evil foods

Cereal is evil for Maddison. I don't even buy any sugary cereal such as Fruit Loops, Apple Jacks or Cookie Crisp. Cheerios, Bran Flakes or any non-sugar added we choose to buy. I know, no fun. Kids LOVE those sugary cereals! And, who doesn't? I wish Maddison could have them, I really do...but the spikes from cereal are crazy!! At last check a few months back Maddison had Cheerios. I balanced with some protein and fat from eggs with cheese. (the girl doesn't touch fruit, a whole 'nother story!) She started at 98 with a 15 min pre bolus and a ratio of 1:10 vs 1:13 her norm. An hour later she was 338!!!!!!!!!!!!! That is pretty much what always happens with cereal for us and sometimes I have seen her DROP way low by hour 3. Still don't have it right, so I gave up and I am happy she hasn't noticed I avoid cereal. She usually has Pancakes or Waffles with Peanut Butter and Sugar free syrup with SF chocolate milk. I need to try harder to sneak in some fruit! How can you not like fruit?

Pretzels are evil. That is a given though with an 81 on the GI index.

Pizza for us, gets us immediately, unlike some people with "D" and of course, the highs get us later too!

Corn Bread, which Maddison LOVES, is horrid for 8 hours!! How does that happen?

Some people complain about french fries for their kids with "D", but those aren't so bad for Maddison. We beat those down every time!

I wish that the CDE would educate you on these types of foods. Our CDE never mentioned any food effecting you differently. Who would have known that digestion of food is a HUGE mountain to overcome in learning about insulin dosing???!!!

Thursday, January 10, 2008

Our puppies

The wee hours of Tuesday morning our Golden Retriever Roxxie had 8 perfect puppies. From midnight until 8am (talk about tired!) I helped her deliver the little cuties. I woke the kids up right after number one came out, and they saw numbers 2-4 be born before I sent them back to bed at 4 am. I kept them home from school as promised. We are in puppy heaven at our house. Mommy dog is awesome, she was a pro from the first push to the last puppy. Maddison sits with them every morning before school and they crawl around in her lap. She told me "They are drawn to me like a "magnament" because they know I love them. Ohhhh how I dread the day we say good bye to them! Grandma gets pick of the litter, so I guess that will help save our broken hearts when the time comes!

We are working to donate a puppy to one of the Diabetes Seizure Alert Canine programs, but of course they require Hip, Eyes and all those top line certifications. So we will see how it all pans out. I really hope it works out, I would feel so great knowing one of our puppies could make the difference to a child and family with Diabetes!

Sunday, January 6, 2008

Vacation is over but not the Honeymoon!

Tomorrow the girls go back to school after 3 weeks of winter break. I have always liked my kids being home. I never wanted to send them to school because they are just what I do every day!I am totally a care taker, and happiest when I have someone to care for. But since Diabetes came along for Maddison I have learned that the routine of school makes management so much easier. The predictable routine saves my sanity in fluctuating blood sugar land. So tomorrow I am looking forward to them being at school, where I know they are occupied and safe.

It was really hard to be at work when they had Great Grandma and Auntie's watching them while I worked my 3 days a week. Big sister Hannah did all the Diabetes work for Maddison, she carbed out and managed highs and lows with adult presence. Hannah lives it with us every day, so she was best at doing this for Maddison since she knows how the pump works and Grandma hasn't been trained yet. So Hannah called me many, many times a day to verify what she was doing. Man, was that stressful. Expecially when she would call saying Maddison was low. Yes, she had adults there that understood low treatment, but you just never know the details of the day! How much has she been running around? Is she coming up or dropping lower?-Ugh

So, I am where the honeymoon part comes in to play, yep...that would be me. I have been playing this Diabetes game for 22 months now since I was diagnosed St Patricks day 2006. Well, I decided I needed to do some basal testing. So, out of the blue I wondered if I even needed my measly 2.45 units of basal I get over 24 hours. That is nothing. For my 118lb body I should require around 20 units a day just for basal amounts when not eating. But no, I am still considered in the "honeymoon" stage

So, I turned off my basals and decided to do my fasting tests, which really sucks because that means no morning coffee!!! At 8pm I started with ZERO insulin. I was 167. But, instead of correcting of course, I left it. I checked myself at midnight when the alarm sounded for Maddison's check....I was 223! YIKES! I have to say at first I thought DAMN! I better just turn the basal back on, but I know myself pretty darn well and a few hours was safe. Well, I slept though the 3am alarm to check Maddison and jumped out of bed at 7:45, late for work. I thought for sure I would be at some near death number. I was 101!!!!!!!!!!!!!!!! What the hell? That is lower than the 120 I always wake up at!! So being on the right track, (and late for work anyway) I decided to just leave my pump set at ZERO. I checked every hour as standard basal tests go......I was 101 then 118 then 131......Ok, I was starving to DEATH. I obviously don't need that measly 2.45 units I pump for basals. But screw this, I need my coffee. As scared as I was to NOT take insulin for carbs, I had my 6c Double Shot Expresso Light with no bolus!!An hour later I was 109. What!?? So, I decided to go for it. I had a 13c low sugar yogurt drink and a handful of Pecans. An hour later I was 168 (with no insulin!) then 104 then 90 by hour 4!!!!!!!!!!!!!!!!!!!! So I starved myself until dinner and called it that. Josh kept telling me to eat my 80c dinner without insulin, but who is he trying to kid? My stressed, barely working pancreas could never catch up to 80c, and probably not even recover on its own!

WOW! I can't tell you enough how empowered I felt that ((((((((((((I))))))))))))))))))))) was in control, not Diabetes. I felt completely cured, although we all know what would happen if I had continued this experiment and eaten normally. But at this point it doesn't matter. I didn't need insulin, for a whole day! If the average person with Diabetes went without their insulin for a whole day they would be extremely ill. In a weird way I am motivated to continue this way. So I am back to my treadmill 5 times a week and low carb. I need to anyway. I feel like a big mush ball after not working out routinely since Maddison was diagnosed. And, we all know about Holidays. I was a too skinny 107lbs in October and I am back to 118 after the wrath of the holidays (and defeating depression) Problem is, if I eat low carb I lose too much weight. But, I would like to continue on this power trip of mine and feel as though I am disease free. So, I will keep my 2.45 basal just to encourage my resting pancreas. I will eat better, and not eat everything I want. I will go back to eating right. I wonder how long I can actually continue this "Honeymoon"???I guess we will just have to see.

Wednesday, January 2, 2008

CGMS soon to come!

Ahhh the new calender year of medical insurance. How sad that I look forward to a new year mainly because my insurance benefits will be renewed! We can now have the Minilink CGMS
sent out without paying out of pocket. A brand new $1000 toy that is waiting to make our numbers better. Less finger pokes! (eventually) Have I mentioned that Maddison is checked at LEAST 12-15 times a day? Do you know how ridiculous that is? Activity for Maddison this Christmas vacation has given her numbers from 34-384 in just hours. And 280-67 in just 20 minutes. Three times this happened in the last week. I can't deny my kid her trampoline, her scooter or running outside with the dog just because she has 1.8 units active. I can't always give an extra snack and make it all right. Some times the juice doesn't catch it. I pray that the Minilink will.

I am scared to death of this thing. I am fearful of the amount of time and work I will have to invest to get it figured out. To get it to make sense, to know the ins and outs of a new medical device. So, I will be wearing the CGMS myself until I understand it better. I just couldn't hook Maddison up without knowing what the hell to expect. We are already running out of "real estate" on her little behind because of the pump sites. Is this thing even going to be beneficial? Is it going to be a nightmare? Will I want to throw the thing in the pool like I did the pump the first few weeks? I have heard all the horror stories of bad sensors, bleeding sites. Rash, irritation, bad readings, numbers that are totally off. I can tell you I am very skeptical, but I believe it is also only as good as the user itself. (most of the time) So tomorrow is the day! They will be sending our package on its way and it will be here Friday.

Did I mention that in 2007 our medical expenses exceeded $3,300 for prescriptions? That is for two with Diabetes in one household. That doesn't include the $1800 I paid out of pocket for my portion after insurance on my insulin pump. Josh's company picked up the $1800 for Maddison's pump as a courtesy/medical hardship. I could never thank them enough for their generosity! Then there was the $1400 in office visits. $1200 we paid to Phoenix Children's Hospital for the 3 days Maddison spent when she was diagnosed. WOW! It really sucks to see that your medical expenses are so high. And now, I am fighting our insurance over pump supplies. You see, our policy covers "disposable medical supplies" at 100% but of course, they are denying bills for pump supplies as DME (Durable Medical Equipment) Well, guess what UHC.....I have been an Insurance Appeals specialist for over 11 years and I am not about to play your games. I can start to save every pump site change if you would like to see that these are indeed a disposable medical supply. So, tomorrow I will have to call them yet again and make my point clear. The cost difference is extraordinary if we were to pay for 24 site changes a month according to how they want us to pay. It is just not going to happen. I will soon let you in on my victory :)