Dose Change & Party

I had to put in a call to Kacey's CDE today. We had a repeat episode of yesterday this afternoon. Her charted blood sugars looked like an EKG...LOL! She had a low of 57 this afternoon and she had NO symptoms this time. She only tested because she was scared she'd drop like she did yesterday and sure enough....she did! She treated with glucose tabs like she did yesterday and only came up to a 166. Her CDE wants me to change carb ratios at lunch from 1:12 to 1:15 and see if that makes a difference. She did explain that all the physical activity she was having was probably causing it all but we could change that now and see how she did through the weekend. If she has more than 2 lows in one day then she wants me to call the emergency line over the weekend. If she doesn't then we need to fax blood sugars on Monday like we usually do and they will take a look at her week and see what changes they need to make.

I thought for sure she'd be running high today since she was having a Valentine's Day party. I figured the excitement would keep her high and silly me didn't think that she'd be saving all her treats to bring home! She was proud of herself that she saved them and then she said if she had known she was going to drop then she would have eaten them! LOL! Oh well! She got several "candy" treats from friends and one little boy gave her "sugar free" heart peeps. He was so proud of himself and told Kacey that he knew she couldn't have sugar and so he got her those so she could have some too. How sweet! Kacey didn't go into the whole spill about sugar free stuff with him...she just thanked him for thinking of her and making her feel special. I thought that was very grown-up of her :) and she didn't hurt his feelings for going out of his way to make sure she had what he thought she could! This is the same little boy that told his mother he HAD to be there for Kacey at the Walk to a Cure so he could make sure she was ok while she was walking. This kid has a heart of gold! And do you know...his mother made it a point to bring him so he could walk with Kacey that day and he missed out on another family event to be there with her. Thats what I call a true friend regardless of gender! Her teacher said that she had a hard time walking up and down the candy aisle and instead of doing candy for the class she decided she was giving them all "Free Homework Passes" ...YAYYY! One more reason we love Mrs. M!! The kids didn't know that she'd stressed over what to get them because she didn't want Kacey feeling left out and Kacey was thrilled to have another pass to use on "high blood sugar" days!

A New Symptom

I got to work another day this month :) This time with 5th graders! It was a great group and overall no major meltdowns. Only one that decided to put a "Kick Me Hard" sign on his friend...haha! Oh yeah, and my first fire drill as a Sub...those are always fun! The end of the day is when the day fell apart. It was 3:30pm and I was bring the class in from outside and one of my friends met me coming down the hall and said "Kacey's low!" I responded with "How low?" (keep in mind the kids were getting their backpacks to go home at 3:40pm) She said "54!" My mind swirled for a moment and I said "Tell them to give her a juice box. NO! Give her 3 glucose tabs!" About that time, Kacey's teacher comes around the corner and says "She's taken care of! I've already treated her." I breathed an instant sigh of relief and got the class packed up to leave. I took them to the front door to go to the buses and I saw Kacey sitting there with Mrs. M and she was smiling. So...this is what happened....

Kacey said she was sitting at her desk and started sweating. (Yikes! SWEATING? Thats a new symptom!) She asked one of her friends if he felt hot? Nope! So asked Mrs. M if it would be ok if she tested? Sure! She got her kit and it was a 54! Mrs. M asked her what she needed to do? She knew what to do immediately. She went to her backpack and pulled out her "emergency stash" of glucose tabs and ate 3. Perfect! There was no need to call on the nurse....Mrs. M & Kacey had complete control over the situation. YAYYYY! I was so proud of her (& Mrs. M!) I was a bit scared because I kept thinking about ...What IF Kacey hadn't tested because she was sweating? I would have got in the car with her THAT low and driven home. Scary! I'm just thankful that Mrs. M is on the ball. We got to the car and Kacey had a little bit of a meltdown. We tested and she was up to a 232 but that wasn't why she was crying. I think the thought of having a low like that at school had finally hit her. Then she cried even harder and said "I knew what to do, Mommy!" Thats right...she did....at only 8 years old, she treated her own low blood sugar without the help of an adult. It's amazing at how responsible our kids are when they are dealing with an illness like this. She did say that sweating wasn't her only symptom...she got the shakies while she was trying to open the glucose tabs but she said she thought it was just because she was scared. (Poor thing!)

She's been on the lower end of things for the last few days. I'm not sure if a dose change is needed? I'm really thinking it's because we've had some really nice weather and she's been playing outside. So now I have a question...yesterday she had gym, played outside for recess, came home and played outside all evening. She went to bed with a 115...woke up with a 151 (hmmmm?) and then she was a 155 at snack...so far so good! But then she went to an 81 for lunch and an hour later she was a 156 but said she was feeling low. An hour after that she dropped to the 54...up to 232 after 30min....and then 2hrs later for dinner she was an 85. Can all the activity she had yesterday affect her blood sugars today? I know that sounds crazy but I'm wondering if all the activity is affecting things.

Insulin Pump

I've had several people ask me lately, "How does the pump work?" So I thought I'd do a post for those that are still unsure about how the pump will work for Kacey. I just spoke with Kacey when she called me at lunchtime and she was so excited about showing off her "make believe pump" and new site. She said all her friends told her they thought it was "cool". Her teacher let her show the class the site and how it disconnects. I know I've said this before, but I'm so very thankful to have such a wonderful, caring and involved teacher like Mrs. M. She's really made an impact on Kacey's life and when you have a teacher like that, you remember that teacher years down the road. Mrs. M was excited to hear all about what we learned last night. I even offered for her to borrow the CD that came with the Cozmo packet and she gladly accepted. She's also said she'd like to attend the 3hr pump class once we get Kacey's pump.

As some of you already know, we have officially decided to choose the Cozmo insulin pump. You can read all about this pump at http://www.cozmore.com/ to get a better understanding of how it works and the wonderful features it has.

The pump is a plastic case that's about the size of a deck of cards or small cell phone. It contains a reservoir that holds several days worth of insulin, a tiny battery-operated pump, and a computer chip regulating how much insulin is pumped. The infusion set is a thin plastic tube with a fine needle at the end. It carries the insulin from the pump to the site of infusion beneath your skin. It delivers insulin in two ways: continuously at a low dose and rapidly in a larger dose. The low dose is delivered every few minutes (3 minutes for the Cozmo pump) 24 hours a day to maintain a "basal" level of insulin, just like the pancreas does in people without diabetes. The larger dose, or "bolus" doses are given before meals. With the press of a button, you program how much additional insulin the pump is to release, depending on results of blood sugar and the amount of food you intend to eat. Your body is unique so you must work very closely with your doctor to get the doses just right for you. The Cozmo pump also has the glucose meter that attaches to the back of it. Kacey will never be without her meter again.

Most people quickly adapt to wearing a pump. When the infusion set is properly inserted and the skin at the site is not irritated, you should not be aware of your pump. The most common infusion site is the tummy but you can also use the hips, thighs and arms...basically the same places you use for injections. The tubing comes in lengths long enough to allow you to put the pump in your pocket or clip it on your belt. You can even get the tubing long enough to stash the pump safely in your sock. The infusion set should be changed every 3 days to avoid infection at the site area.

The Cozmo pump is waterproof but it can be put in protective cases during sports. Some pumps have a quick-release device for temporary detachment. Most patients feel that the adjustments they have to make are minor and that having their diabetes well controlled makes the effort worthwhile.

Insulin pumps have been available since 1979. They have become very popular over the past several years because of their convenience, flexibility, and ease of use. The insulin pump isn’t for everyone though. You must be willing to check your blood sugar at least four to six times a day, before each meal and before bed and remember to bolus every time before eating. Insulin pump users must also know how to count carbohydrates and should have their diabetes in control before starting the pump.

VA Air & Space Center

Today I had the chance to go with Kacey and her 3rd grade class to the VA Air & Space Center. I've lived in VA for almost my entire life and I've never been there. I must say I was a bit overwhelmed at first because there is SO much to see. We got there a little after 10am and we had to leave by 1pm so we didn't even get to see 1/4 of the museum and so I am going to have to take time to take the girls back when we can go through the whole place. We did have a chance to watch an IMAX movie (which Kacey loved!) It was about walking on the moon and actually showed first steps on the moon.

Kacey sporting the IMAX 3D movie glasses...and a snack since she was dropping!

Kacey learning how to land the space shuttle...LOL she's laughing because she crashed!

After the movie we went into a room where the kids got a chance to break up into groups and "build" a space community. They had so much fun being creative and it was great to see them so excited about what they had learned. We did battle another low today. When we arrived at the museum at 10am, Kacey was a 165...not bad for having pizza for breakfast (LOL! Yep I thought we'd avoid the low on a fieldtrip with pizza...Didn't work!) By 11am, we were watching the IMAX and Kacey tested at a 112 but said she felt like she was going lower. I quietly pulled out a snack during the movie so we could avoid the low. I knew lunch wasn't going to be til 1pm and by then I knew she'd be low at the rate she was falling. Well, at 12:45pm, Kacey came over to me and asked me when we were eating? I hugged her and told her she had a few more minutes and she said "I don't think I can wait that long cuz I'm really hungry and I feel low again." .... "You had the snack so I'm sure you are fine and we only have 15min and we're leaving and you can eat." ...."But Mommy...." I shot her one of those "You can wait!" glances and we waited quietly for the lady to finish talking. As we walked out to the bus, Kacey looks at me and says "I know I'm low and you'll see!" Her teacher giggled and we got on the bus. She immediately sat down and tested......70!!! She gave me a grumble and said "I TOLD YOU I WAS LOW!" as she proceeded to show her meter around to everyone within arms reach. LOL! OK....so maybe I was wrong...maybe she couldn't wait! Her teacher looked at me and laughed and said "Guess we better feed her when she says shes low." Haha! She ate and finished reading her Goosebumps book on the way back to school. Sometimes I really do think she knows her body :)

The Results

We just got home from Kacey's 6mo. Endo checkup and the results are in.......

YESSSSSSSS..... That is a 7.3%!!!

I am thrilled with the results and that is an excellent A1c for just 6 months into diagnosis! Her doctor was very happy to see that number :) When she was diagnosed her A1c in the hospital was a 10.5%!! We were in there for a little over an hour because we got to speak with the Educational Consultant about how she was doing in school and how the 504 Plan was working out. Everything was so positive! Dr. R came back in and I got to ask all my questions *smiles* The major one being....

When can Kacey start the pump?

His response.... (looking down at all her paperwork and then looking back up at Kacey) "I don't see any reason why we can't have her in the pump class on Feb 5th."

O.M.G.!!! I dont think I've ever seen Kacey smile so big before! So YES...there IS a possibility if everything goes smoothly with getting the insurance approval, she should be pumping by her birthday on March 8th. I just can't put into words how thrilled I am right now for Kacey.

Dr. R went on to praise her for keeping her blood sugars in good control, making sure she rotates shot sites and for not overusing her fingers since she tests so often. After we did all that she had to go have labs done... a blood test to check levels and cholesterol and a urine test. The last time she had to be stuck like that was when she was admitted in the ER for diagnosis and that brought back some pretty tough memories (for all of us!)

She wasn't too happy about getting the blood test. After we finished in there, we took a walk down to the ER to see if we could find Nurse Amanda. She was Kacey's ER nurse when she was diagnosed and admitted to the PICU. We spoke to two different people and they didn't know who we were talking about :( So we didn't get to see her.

It was a long day full of excitement and a few tears. This was the first time we'd been back to the hospital since she was diagnosed and walking through the hallways brought back all those memories. Some good, some bad. I asked both girls what memories they had of being there. Kayleigh laughed about eating cafeteria food with Daddy and how noisy it was in the PICU. Kacey got tears in her eyes and said I remember how nice the nurses were to me and getting to play with the sick kids in the playroom. I turned to Frankie and asked him what his memories were and he said he just remembers being scared because she was so sick. As for me...it all seems to be such a blur and I just remember feeling rushed through everything. Everyone was so nice and so supportive and I just remember feeling so low. I beat myself up over the guilt I felt. Guilty for not being able to see all the signs sooner and her getting so sick. My memories this time....I walked through those halls with confidence. The confidence I've gained the last 6 months. The feeling of control....control over Kacey's diabetes. This time I walked through those halls with a smile. A smile because we are not letting this D-Monster rule our lives anymore!

Today was a good day....no make that a GREAT day!

More about pump class soon :) YAYYYYYYYY!

Virus...Virus...Everywhere!

Yikes! It's been a crazy few days. The word "VIRUS" has circulated through our house and it's making it's rounds.

First, on Friday, my computer started acting weird. I did a virus scan and it locked up. I had one of those "Oh shit!" moments. I tried 3 more times to run the scan with no luck. It wasn't long after that I got a pop-up telling me my computer was infected with a worm and I needed to run a complete scan. Ummmm....I TRIED TO! So I ended up downloading another free scan. No luck! It would get to the end of the download and then tell me it couldn't be downloaded. My browser was hijacked and I couldn't get to any website directly to download another program. So after 3 days of research I finally got Malwarebytes Anti-Malware to download and once I renamed the file it worked ;) Ahhhh the power of the net is a great thing! Virus can kiss my ass! I will now make a vow to run the scan every other day to keep that crap from getting in my computer.

So...then yesterday morning Kayleigh woke up and said she didn't feel well. Since she is due for her time of the month I told her it was probably just that and for her to just take a day to rest. She got a shower thinking she'd feel better but when I heard the call from the bathroom....you know the call... "Mommmmmmmm I need you!" with that bit of panic in her voice. I went running in and she was sitting on the closed lid toilet and said she didn't feel good and everything went black and she was seeing black and yellow spots. The "mommy panic" set in and I immediately grabbed the glucose kit because my first thought was low blood sugar since she hadn't had much of an appetite the day before. It was an 84...perfect for a nondiabetic. She sat there for a few more minutes as this passed and she didn't have anymore symptoms until lunchtime. She said she was freezing and her body was aching all over and when I went to touch her cheeks she was burning up! She was running almost a 102 fever...yikes! No sore throat, no cough, no stuffy nose or drainage, no sick stomach, no loose bowels... I was puzzled! I gave her some Motrin and she went back to bed. She still didn't have much of an appetite. She stayed in bed all afternoon and started feeling a little better by dinnertime. She ate a little bit of dinner and went right back to bed. She alternated between pulling the covers up and kicking them off so I knew she still had the fever. She ran between 100-101 all night and then this morning it was back up to nearly 103! I put her in the bathtub and called the doctor. They got her in right away. The doc tested her for strep and the flu...both were negative (thank goodness!) So what is it? A VIRUS!!! Ahhhhhhhhhhh! It's a virus that mimics the flu but without the throwing up and loose bowels. It wipes you off your feet though. She also had protein in her urine and I have to take her back in a few days to have that rechecked. She was quick to tell me there were no traces of sugar (LOL! Duh!) And whats even worse...Kacey just came to me an hour ago and said "Mommy, I don't feel too good." UGH! The doc told me that it would probably go through all of us since it was a virus and there is nothing we can do to prevent it. Ummmm...can you say LYSOL? Hahaha! It just sucks because I know if Kacey gets it then it will throw her blood sugars in a tailspin again.
***sigh***
So thats been my last few days in a nutshell.

As for this week....
Tonight we are spose to be dumped on with about 6 inches of snow. I'll believe it when I see it...LOL! Kayleigh has exams this week so that will throw the exam schedule out of whack for sure. But with all the hustle and bustle of everything going on, it made the days fly by a little faster and we are down to 3 days until Kacey's Endo visit! More to come on that soon :)

A New Pattern

Kacey's CDE called today and I was able to speak with her about the 48 mg/dl she had the other day. She was just as stumped as to why she dropped but she said not to be alarmed because we test often enough and we would of caught it before it got too low. How low is too low? I thought anything below 80 was low so what is too low? She reassured me that Kacey is fine and not to be alarmed when we see those 40's. It is something we're going to see on a regular basis. (yikes!) So she went on to tell me that Kacey was definately through her honeymoon. Made me want to cry but at the same time be happy. Reason being...we were told no pump until she was through the honeymoon so this means we have a green light for the pump but at the same time it means her pancrease is completely broke :( It's not spitting out anymore insulin and now she's completely dependent on the shots (not that she wasn't before...but its more final now) So...I'd call it a "bitter-sweet" moment. I did express (for the thousandth time) how we were really pushing for the pump and I told her about Kacey asking Santa for one. We had an "awwwww" moment and she told me that when we go to see Dr. R next week, to let him know Kacey was more than ready for the pump and since Santa couldn't give it to her for Christmas then maybe Dr. R could give her a great birthday present ;) (her bday is Mar 8th) She said we were doing an excellent job testing through the day and the more she tests the better they can adjust her dose. That really made me feel good! She did have one concern though. It's a concern that I brought up before but then was quick not to "make excuses" for the highs. Her concern was this... when Kacey was home for those 2 weeks for Christmas break, her blood sugars were nearly perfect! We had nothing over 200 with the exception of Christmas Eve and New Years Eve (totally understandable) but when she started back to school last week her blood sugars went wacky again and she's been bopping around in the 200's and then at dinner time she drops drastically. For instance, yesterday she went from a 269 @ 3pm (2hrs after lunch) to a 68 @ 5pm and so I threw a mini pizza in the oven and while waiting for it to cook she said she felt REALLY low and she dropped to a 60 in 10min. So she asked me... Is Kacey anxious at school? Is she under a lot of stress at school? Maybe changing classes is something that is making her feel anxious and stressed and she just doesnt know it? Can you think of anything that would make her bounce in the 200's through the day with absolutely no change in her regular diet? My reply....No. Her teacher had mentioned back when we did the 504 Plan that Kacey seemed to get a headache or tummyache when it was time to leave class. Mrs. M thought maybe it was because she was feeling insecure. As I mentioned before, Mrs. M's husband is Type 2 and Kacey feels very secure with her. It's like she knows Mrs. M is going to be able to take care of her if something happens because she knows what diabetes is and how to handle highs/lows. She told me that with lots of positive encouragement, Kacey finally started to leave the room without "feeling bad". She hasn't mentioned anymore about it so I assume that she hasn't had anymore problems with it. I really never thought about stress making blood sugars go up. I knew I had read it but I think I just automatically associated stress with adults. Shame on me! I guess I never considered Kacey to be stressed over anything. When I asked her if she was feeling ok this afternoon, she said she had a great day and so I asked her if she had anymore issues with feeling bad when she changed classes and she told me no. So what do I do? She doesn't appear to be stressed and she loves school. She actually cried the day they left for Christmas break because she thought it was the end of the school year. Sad huh? LOL! My question is this...those of you with kids...do their blood sugars run higher at school than when they are home? Back to the high and drastic drop....for the last 3 days, she will run high in mid-high 200's 2hrs after lunch and then make that drastic fall to the 60's. Her lunch ratio is 1:10 and we have to keep it at that to keep her from spiking at 3pm. So I made a suggestion to the CDE... at 3:30pm when I pick her up from school, should I give her a snack and then do dinner about 6:30pm instead of coming home and doing dinner at 5pm? I'm trying to figure out a schedule that would work best for Kacey. She said to keep the same schedule for the next week and see if she drops every single day at dinner. If she does, then I can switch the meal times up and play with it til I get the timing right.

Today is a good day :) The reason...because I feel like I do have control of Kacey's diabetes, despite the highs and lows she is having. I feel like I understand things so much more and I've certainly come a long way and learned ALOT in 6 months. I am thankful to have one CDE call me every week (God I hate change!) I used to get frustrated when we had 3 different ones calling and none of them really knew us. I've built a nice relationship with our CDE and it was actually nice to sit and talk with her for 15 min on the phone today. I didn't feel rushed and she was really open to my ideas. When she told me I was doing a good job managing things I felt a beam of sunlight :) Thats a great feeling! LOL I giggled and told her the true test would be that "report card" we get next Thurs! She reminded me that we were only 6 months into this and not to expect to have that 6.0 and I said anything lower than the 10.5 she had in the hospital would be great with me ;)

Tomorrow is a big day for me. I will be substitute teaching all day for my internship. I am shadowing a great 1st grade teacher :) I've already popped in to tell her I was going to be in the class with her and she was thrilled to know the name on the email she got was me. (Can you say....confidence boost!) I'm really excited!

The Lowest Yet!

We had a rough morning yesterday! Kacey woke up at a 127. She's been waking up with some really great blood sugars and she's still had a great streak of daily blood sugars. When we went shopping on Saturday, Kacey has been asking for syrup. Syrup = every diabetics nightmare. Ugh! So I decided to take a look at some of the sugar free ones. I know those can be just as bad! But it's hard to eat waffles or pancakes plain. So there I stood in the aisle at Walmart scanning the labels of syrup with Kacey beside me grinning. Pancake & Waffle Syrup = 53g carbs (OMG!) Pancake & Waffle Light Syrup = 26g carbs (getting lower...but still OMG!) So then I spot Sugar Free Butter Flavor Low Calorie Syrup from Maple Grove Farms. Hmmm... made with Splenda...ohhhh then I spot where it says "supporter of Children with Diabetes" (cool!!)...turn it over 12g carbs! (wow! much better!) So as a parent, what do you do? Make your child eat plain pancakes or give in and bolus for the sugar free stuff? I gave in! I explained that because it was sugar free then it might not taste as good, but she'd adjust to the flavor. That brings us to breakfast yesterday. She wasn't very hungry and said she wanted waffles. Ok, 2 waffles, 30g carbs. Plus syrup, 12g carbs. Spray butter, 0g. Thats 42g carbs and I've got a smiling child. She loved the syrup! I tasted it and it wasn't bad at all. I could actually switch the whole family over to that stuff. This was at 9am. By 12pm, Kacey came in and said she was hungry. Well all she had was 2 waffles so since it was lunchtime, I told her to go test. The result....

This is been Kacey's lowest yet!! Umm, Kacey do you feel low? No. Do you feel shaky? No, I'm just hungry. I quickly got her something to bring her up. 15 min later, 88. Wow! By then she was getting fussy and wanted lunch. So she had lunch and tested 2 hours after that and she was an 81 (and falling). So her body decided to do something silly yesterday because then once we got to the JDRF Awards, she was running in the 200's! What scared me was she never felt the low! Thats really low for her and she wasn't having any symptoms!

Weird Feeling?

Kacey experienced something really weird last night and again today.

Last night she went to bed around 8pm and woke up at 9:30pm in a sobbing cry. I went in her room and she was sitting up in bed wiping her face. I asked her what was wrong? I thought maybe she was dreaming and she said her tummy hurt. So I felt her face to see if she was warm. She wasn't. She then said "Mommy I think I need to test because I feel low." LOW? She was a 234 before bed. She couldn't be that low in just an hour. So I got her kit and she was a 199. She sat there and continued to sob insisting she was low. She kept saying "Mommy I feel it! I feel low!" So I retested her to make sure...198. Nope she wasn't low. She did it again this morning. She woke up at a 156 and was extremely tired. She said she felt "fuzzy". She insisted she was low and she knew what low felt like! Because I don't know what a low feels like, it's hard for me to understand what her body is doing. Does anyone know what she's talking about? Could she be feeling like that because she's starting to come down from a 200+ blood sugar? I don't know and I don't understand why she's feeling this.

She did go on to school and she said she didn't have the feeling anymore. When she tested for dinner she was a 91 and she wasn't feeling "weird".

I'm baffled!

Excellent Numbers!

I will probably jinx myself by posting about this but I'm going to risk it! **giggles**

This past week Kacey has had some awesome numbers! It's one of those weeks that I've felt in total control of her diabetes and a high number here and there hasn't upset me at all. The low's that shes had haven't been really low. She's hit the 60's or 70's and she gets that "weird feeling" and asks to test. All of them have been from "my eyes are bigger than my stomach" issue. She says she is hungry and then she will eat about 3/4 of it and say shes full. Thankfully we've checked and caught the lows before they got too low! So I thought I'd share these numbers :)

Mon- 211, 131, 139, 121, 102, 203, 174 (bedtime)

Tue- 136, 123, 208, 132, 110, 105 (bedtime)

Wed- 147, 123, 211, 195, 90, 238, 274 (bedtime) New Years- high carb fun snacks

Thu- 151, 136, 238, 215, 165, 110 (bedtime)

Fri- 121, 109, 199, 79, 152, 137 (bedtime)

Sat- 128, 134, 119, 61, 93, 70, 137, 119 (bedtime)

Sun- 102, 104, 144, 70, 169 (dinner...not tested for bed yet)

She woke up at 102 this morning and thats the lowest shes woke up at in a long time! I like the looks of these numbers and I hope they don't make any changes this week when I fax blood sugars in tomorrow. Let's just hope these numbers stay this way for a while!

Shhhhhh! I can dream, right? ;)

Diabetes Etiquette & Rant (Watch out!)

We're only 5 1/2 months into Kacey's diagnosis and I've not really had too many confrontations about her diabetes with anyone. I try my best to educate those around me that are ignorant to Type 1 and how it differs tremendously from Type 2. I try my best to keep my cool while inside I'm ready to explode because some people just don't understand how difficult some days can be. Diabetes doesn't give you a break. It's always there. It never takes a vacation. I never get to just relax (even though I really try to) I still constantly worry. As a Mommy, thats my job! I do my worrying without many seeing it. I never let Kacey know that it frustrates me when we can't get the numbers in control. I never let her see me silently cry and wish this disease would go away. When I hear people say thing like, "Well it could be worse! She could have cancer or something worse.", I wanna scream at them! Some people don't think diabetes is a big deal....IT IS! No she's not dying and she doesn't "look" sick...but if I wasn't the type of Mommy to stay in control of her diabetes then she WOULD be dying and she WOULD look sick! Without her insulin, she'd die in a few days! That's one freaking scary thought if you ask me! It just makes me so mad that people could compare this disease to diseases they think are "much worse" when in fact this D-Monster is a horrible disease that will NEVER go away! So yes...its just as worse as something like cancer!

Which brings me to my Diabetes Etiquette. I've seen this posted on several blogs that I keep up with and I figure since it directly affects what I'm feeling right now then it was my turn to post it! My job as Kacey's Mommy is to educate those around me that are ignorant to diabetes and to the "myths" about this disease. People don't understand the effort it takes to keep your child's blood sugars stable, the frustration you feel when you don't get the numbers you hope for and the emotion it takes on your entire being.

Number 1: DON'T offer unsolicited advice about my eating or otheraspects of diabetes.You may mean well, but giving advice about someone’s personal habits, especially when it is not requested, isn’t very nice. Besides, many of the popularly held beliefs about diabetes (“you should just stop eating sugar”) are out of date or just plain wrong.

Number 2: DO realize and appreciate that diabetes is hard work. Diabetes management is a full-time job that I didn’t apply for, didn’t want and can’t quit. It involves thinking about what, when, and how much I eat, while also factoring in exercise,medication, stress, blood sugar monitoring, and so much more – each and every day.

Number 3: DON’T tell me horror stories about your grandmother orother people with diabetes you have heard about. Diabetes is scary enough and stories like these are not reassuring! Besides, we now know that with good management, odds are good you can live a long, healthy, and happy life with diabetes.

Number 4: DO offer to join me in making healthy lifestyle changes. Not having to be alone with efforts to change, like starting an exercise program, is one of the most powerful ways that you canbe helpful. After all, healthy lifestyle changes can benefit everyone!

Number 5: DON’T look so horrified when I check my blood sugars or give myself an injection. It is not a lot of fun for me either. Checking blood sugars and taking medications are things I must do to manage diabetes well. If I have to hide while I do so, it makes it much harder for me!

Number 6: DO ask how you might be helpful. If you want to be supportive, there may be lots of little things I would probablyappreciate your help with. However, what I really need may be very different than what you think I need, so please ask first.

Number 7: DON’T offer thoughtless 10 reassurances. When you first learn about my diabetes, you may want to reassure me by saying things like, “Hey it could be worse; you could have cancer!” This won’t make me feel better. And the implicit message seems to be that diabetes is no big deal. However, diabetes (like cancer) IS a big deal.

Number 8: DO be supportive of my efforts for self-care. Help me set up an environment for success by supporting healthy food choices. Please honor my decision to decline a particular food, even when you really want me to try it. You are most helpful when you are not being a source of unnecessary temptation.

Number 9: DON’T peek at or comment on my blood glucose numbers without asking me first. These numbers are private unless I chooseto share them. It is normal to have numbers that are sometimes too low or too high. Your unsolicited comments about these numbers can add to the disappointment, frustration and anger I already feel.

Number 10: DO offer your love and encouragement. As I work hard to manage diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.

Behavioral Diabetes Institute

Ok...I don't intend for this to be hurtful to anyone but as a parent you must know that we become "protectors" of our children. We work very hard to manage this disease and we don't need someone downgrading it by saying "It could be worse...she could have cancer." You're right...it could of been cancer...but this IS something just as bad...it's a progressive disease like cancer and it's certainly just as life threatening! Every single day I wake up and pray to God before I get out of bed that he watched over my baby and didn't take her from me. As I tiptoe to Kacey's room and place my hand on her chest to make sure she's breathing, I check her blood sugar while she's still sleeping peacefully and I pray for a "safe" number to show on that screen. It IS a scary disease and because I can't feel what her body is feeling that makes it even scarier!

**edit**
Furthermore, I was told today by a blogging mother ..." But many of our kids who have Down syndrome, deal with much more serious life threatening issues than diabetes, and there is not always a remedy such as insulin."

Well in response to that....cancer could be managed with taking the mass out and doing chemo/radiation and the person can be cancer-free... there are other serious life threatening illnesses that can be cured...but....

Until a CURE is found my child will NEVER be diabetes-free!!!!!!!!!

OK...I think I've said enough...probably too much...but after all, this is MY blog...MY place to vent my feelings...and I'm VERY thankful to have the support of every Type 1 and Parent of a Type 1 out there because they KNOW this exact pain and frustration I'm feeling! I love you all :)

The First Day Of 2009

Wow! It's hard to believe that a whole year has gone by. As I get older, the time seems to pass faster and faster!

Last night was a great evening! My Mom and Brian ended up coming over for dinner. The girls then convinced them to play the Wii. Yep! Can you believe it? The giggles echoed through the house and I think Mom and Brian enjoyed it as much as they did! Frankie and I sat back and watched as they played 2 games of bowling, a game of Yahtzee and then the girls showed them how to play the Carnival Games. It was a lot of fun! Before Kacey was diagnosed, she and Kayleigh used to spend every Friday night with my Mom. It gave Frankie and I a chance to be alone and gave them time to spend with her. When Kacey was diagnosed, the Friday nights stopped and then only Kayleigh was going. Well Mom really misses having them there! Kacey still isn't comfortable enough to stay the night away yet and I know it will take some time. We're on the countdown to her visit with the Endo... 21 more days! We will find out then when we start pump classes and my Mom is going to go to them too so she can learn what to do. In the meantime, I think they are going to start coming up here on Friday nights and bring pizza and play the Wii ... haha! It'll be fun for the girls :)

Both girls tried their hardest to make it to midnight without dozing off. Kacey's eyes shut a little after 11pm and we woke her back up at 11:30pm because she wanted soooo bad to see the Jonas Brothers in Times Square. She was wide awake then! She'd had that "power nap"...you know those ones they get as babies... 30min of rest and their little eyeballs pop open and no matter how hard you try you can't get them back to sleep! LOL! So both girls were awake at midnight and we woke Daddy up with the excitement :) (heehee!)

The girls had fun with the streamers and horns. They finally settled down about 12:30am and it was off to bed! Kacey was complaining of her head hurting....test her sugar...274! I don't know if that was a spike from the excitement, from playing the Wii earlier or from dinner but I was scared to correct and her drop too low during the night. When I tested her this morning... 150. Perfect! So it must have just been all the excitement.

I hope you all had a great holiday and I look forward to a wonderful 2009! No New Years resolutions for me since I break them by Feb 1st...haha!

Diabetes In Style

I think Kacey will be following in her sisters footsteps with the Vera Bradley addiction! For Christmas, a family member gave her her first Vera Bradley bag. It was a small over the shoulder purse that she could carry her kit and insulin pens in when shes by herself. We ended up going shopping this past weekend and this is what she ended up with!!It's a Vera Bradley backpack and "diabetes kit". She nearly did cartwheels in the store because when we found the "diabetes kit" she kept saying "It was made just for all my diabetes stuff!" I think it's really a make-up bag but I didnt have the heart to tell her that!

The kit comfortably holds her meter, lancet, test strips, both insulin pens, diabetes card with all her info, 2 extra syringes and in the 2 zippered pouches.... lancets and pen needles! Everything right in one little bag :) The backpack holds that kit, extra snacks, a juice box in a baggie (after that low yesterday), odds & ends like bandaids & handi-wipes, on-the-go Crystal Light packs, glucose tabs, glucose gel, skittles & smarties (thanks Lynnea), $5 for those "just in case" moments (you never know when you wont have cash on you to grab a snack!) and ohhhhh we can't forget the Nintendo DS! LOL! She's only had the backpack for 3 days but she's wanted to carry it! I think it makes a huge difference if you're forced to carry all these things that you be able to carry them in style! *wink* (BTW, I still don't own a Vera yet!)

When she first came home from the hospital, they sent us home with what they called a "Camo Pack". It was pink, blue and white camoflauge (Yuk!) but it was like an insulated lunchbox. It had a long strap and was sorta awkward looking. She carried that for about a month and then we tried switching things over to a bigger bag that I carried as my purse. Well that didn't last long because the first time she wanted to go somewhere with Daddy, I had to empty my crap and give her the bag. So then we switched to a purse with hearts all over it. It was flimsy and had a short shoulder strap that she couldnt keep up on her shoulder. So then she went to a mini backpack. That seemed to work the best! The backpack was one her sister had in her closet and never used. She's carried that for about the last 3 months. Its been nice because we are able to toss it from one car to the next...she can strap it to her back and not have to worry about losing it...and she can keep up with it instead of us always having to drag it. Since she's done so well with it....why not get her the Vera Bradley? ;) Now she's in-style! LOL!

Insulin Question?

So...this is what happens when you get insulin before a meal...then your child decides she's not as hungry as she thought she was! Kacey tested for lunch.... 257....but she'd just come in from riding her bike. So we tallied up the carbs she was gonna eat and gave her a correction. She sat down to eat and then decided she didn't want her mashed potatoes... ummmmm can you say... UH-OH! Thats about 2 units of insulin and we can't take it back! So I figured I'd just wait and see what happened.....WELL......

Two and a half hours later.... she comes to me and says "I think I need to test!" YIKES! I always know that it's bad when she asks to test because she's feeling that low come on. She tested.... 53! Yowsaaaaa! We were at Frankie's grandmas house and we had her diabetes pack but she turned her nose up at glucose tabs. Hmmmm.... gatorade? NO! juice? NO! Kacey you HAVE to drink juice or eat the glucose tabs. The last time she was low and we did the glucose tabs she went from a 60 to a 495 and it made her sick. Ok...so last time it was 4 tabs... lets try 2 and see what happens? I managed to get her to eat 2 of them and the result.....

A perfect number! She immediately started to feel more perky and smile. So thats good :) and we managed to bring her up without making her high again!

The reason for this post....

I've always had issues with giving her the insulin before her meal. I know the doc told us that we have to give it before the meal and I did raise the question...What if she doesn't eat what we bolus for? and the response was... give her juice to make up for the difference. But what scares me if there may not always be juice at our fingertips...and we end up having to treat with the glucose tabs. Is there a way to avoid this all together? Does the insulin HAVE to be given before the meal or can we do it as soon as shes done? I'm guessing to gain better control it has to be given before so it keeps the blood sugars from rising so fast but it's times like this when she doesn't eat everything we bolused for that I wonder if we should have waited?

Any suggestions or advice?

You Know....

I got quite a giggle when I read this on Sheri's blog and had to share it here! This is hilarious but the sad thing is....I've done most of them! LOL! Enjoy :) and THANKS Sheri for the laugh!

YOU KNOW YOU'RE THE PARENT OF A DIABETIC WHEN.....

In conversation, your husband describes his personality as Type 1 instead of Type A.

You ask your child how her day at school was, and she answers with a number.

The microwave beeps and your d-child shouts “that wasn’t me!”

Everyone in the family says they are "low" instead of hungry!

When your parents answer the phone, the first thing they say is "What's wrong?"

You have no problem asking your child if they are "high" in a middle of a public place.

You make sure your child has candy in bed with them

You ask your child what they had for lunch and they reply 45 carbs!

Your daughter wakes you up in the middle of the night and says, "Mommy, I'm beeping."

Your child says "I'm tired" and you ALWAYS have to wonder if she's low, high, or just plain tired.

You travel with as much food as you do baggage!

You hear another parent wish that kids would come with instructions and your diabetic child pipes in and says, "I do, and I don't leave home with out them."

Your first grader calls you from school to tell you that his teachers, nurse, and health aide are all absent so you decide to go to first grade for the day.

Your child refers to sequel movies as "Type 2".

You automatically wake up at 2:00 a.m.

Every meal turns into a math equation.

Your child falls and before you ask if they're okay you ask, "How's your pump site?"

You base your entire self-worth on your kid's last A1C!

You know what glucagon is and what it does.

You wake up the entire house because you accidentally finger poke your daughter's best friend for the middle of the night check - they look way too much alike.

Your daughter has a sleep over and her friends line up for blood sugar check, and none of them have diabetes.

Your daughter begins to miss the school nurse over summer break.

Your child refers to having a cold as being 'real people sick'.

You laugh out loud reading this list.

Another Dose Change!

I really saw this dose change coming and I predicted it a week before the call. The CDE just called me and said that Dr. R wanted to change Kacey's lunch carb ratio again. Instead of 1:12 they want to make it 1:10...wowwwww! I know she was still bouncing up in the high 200's to low 300's two hours after she ate lunch. They also want her to test after breakfast to watch the morning dose and see what happens. So now she will be testing three times while she's at school. So before she eats that morning snack at 10am then she needs to test. This won't need to be in effect until she goes back from her Christmas break since tomorrow is her last day til Jan 5th. So for now, her breakfast and dinner carbs will stay 1:15 and lunch is 1:10. Weeeeeeeee! It's a good thing I have the ability to keep all these numbers straight! I sit and think sometimes what if I was one of those mothers who was too busy with a social life to worry about numbers? Or what if I was one of those mothers who really didn't give a shit about her child? Yikes! Thats a pretty scary thought :( I know at times it's very stressful to remember I:C ratios, test times, figuring carbs (gotta have a calculator at all times), making sure you give Humalog and not Lantus... and I wonder how a child manages with a mother that isn't on top of all of that? I'm just pleased with myself that I am comfortable enough to make those dose changes or at least notice when I think one should be made and make note of it when I fax her blood sugars in. I knew she needed that carb change but I didn't want to make it until they called me because I know they are keeping close eye on the changes now. Wahooooo! We're almost a month away from her BIG 6 month appointment! I'm excited for 2 reasons.... 1) I finally get to see what her A1c is since she was diagnosed and 2) we get to discuss the pump!!!! I told Kacey that we knew she wouldn't be pumping by Christmas....but we're gonna push hard so she is pumping by her birthday in March!!

Training

Today was a milestone day for me. Today is the first day I left Kacey with anyone other than school or my Mom. I had to be at the training at 8am and school doesnt start until 8:40am. I took her to Frankie's cousin's house (who happens to be a very good friend of mine and her daughter is the same age as Kacey) I knew I could trust Bev with Kacey. I showed her Kacey's bag yesterday and showed her how to work the glucagon (just in case!). I dropped Kacey off at 7:45am and headed to my training. I got a break at lunch and I called the school to check on her and she was doing fine :) But I did get a bit of a "monkey wrench" thrown into my plans. I was originally told that it was going to be Tues & Thurs from 8am-4:30pm and now it's going to be on Friday! Well that means it's the last day of school before winter break. That also means I miss Kacey's school party. But most important...she has a fieldtrip that day!!! Shes going to the movies and I am VERY nervous now. It will be the first fieldtrip that I've not gone on since her diagnosis. I sat there brainstorming about what I needed to do. I can't miss my training on Friday because they aren't offering it again until next August. Sooooo....I am going to have her test before she leaves for the movie at 9:30am....eat a snack at the movie....then test when she gets back at 12pm. Hopefully this will eliminate any lows while she's out and then we can deal with the high once she gets back to school. OMG...I feel like I'm panicing over nothing but I'm scared to let her go. I know she will be ok and she can sit with the teacher during the movie. I am hoping that Bev (Frankie's cousin) will be able to go. Kacey & Whitney are in the same class and they were only allowing a certain number of chaperones to go. If they let her go then she can sit with her and she will know what to do (just in case!)

OK....Im gonna shut up and stop rambling!

LOL....so yeah it was a long day today. Lots of stuff about policies and procedures that I already knew from being in the classroom already.

Do Your Ears Hang "Low"?

LOL! This pic made me giggle hysterically! This is Kacey's first low in a long time! She woke up from a nap and told me she felt "funny". I grabbed the kit and this is what we got! Yikes! I caught up on several blogs this morning and it seems like many of you are suffering with lows! It's funny when you think about it because when Kacey is having all the unexplained highs then it seems like everyone is running high and then I read about all the lows and damn if she doesnt go low! Haha...its almost like having a bunch of women in the same house...when one gets PMS then it seems like they all do and end up getting on the same "monthly" schedule!

Nightmares!

I had a horrible nightmare last night that kept me up most of the night! I was reading one of the blogs yesterday about waking up and finding your child dead. Thats ALWAYS been a fear of mine! Since Kacey's diagnosis, it's gotten worse. When I wake up every morning, I tiptoe to Kacey's room and I ease my hand to touch her sound sleeping body....just to feel that she's warm! Then I test her blood sugar while she is asleep. I hold my breath until I see the number and most of the time it's high anyway but I can't shake that feeling of her waking up really low.

So...my brain must have been in overload after I read the post....

(keep in mind this is a DREAM)
In my dream, it was bedtime and I gave Kacey her insulin and put her to bed. I woke up to do a middle of the night check and her meter said 64. Wow! So I looked at the clock and it said 1:11 and I knew if I didn't give her anything to bring it back up then she would continue to go low and she had nearly 5 hours before it was time to wake up. I had her drink some juice and I went back to bed. On my way back to my room, I passed the dining room table where Kaceys supplies were laying and it was then that one of my worst fears had happened! The Humalog pen was laying out with the lid off. I gave her 13 units of Humalog instead of Lantus!!!! I started freaking out and went into a panic state and it was then that my husband felt that I was having a nightmare and woke me up!

It took me a long time to get back to a restful state. I'm always so afraid that I am going to give Kacey the wrong insulin. The Humalog and Lantus are both in the pens and even though one is blue and one is gray...I still use a sharpie marker and write DAY and NIGHT on them. Its for my own peace of mind to make sure when I get the pen that I see it written. I also write the date we opened it so I know 30 days from then we have to trash whatever is left.

Anyway...amazing what your imagination can do to you!

More Meds

I ended up calling the doctor this morning for Kacey. She was up all night coughing and feeling pretty miserable with blood sugars in the 300's. When she got up this morning she was still a 264 and was feverish. I took her temp and she was running a low grade 99.1 and her nose was running so bad. The CNP that we saw the other day wasnt working today and I explained to the receptionist that we were instructed to call back if Kacey got worse and she IS worse! She talked to the doctor and they pulled Kaceys chart and within an hour they'd faxed over the prescriptions to the pharmacy....another round of Zithromax and some cough med with codiene (to help her rest and quiet that nasty cough) ~sigh~ Kacey spent most of the day laying around and taking cat naps. She ate very little for breakfast...a little more for lunch....and NOTHING for dinner! Now the panic Mommy part of me was worried that she wasnt eating but the common sense Mommy part of me said its ok because her blood sugar was a 204! She did ask for some sugar free hot chocolate and nilla wafers for bedtime snack. So she got a little of her appetite back and her sugar was a 184...so at least we're down out of the 300's.

I sure hope she kicks this cold soon! I dont know if she'll be home from school again tomorrow? I dont want her to miss class...but then again her poor body needs the rest too and I think another day at home might do her some good since she's struggling so hard to fight this cold! We'll see how she does through the night.