Pump Shipment

It's official!

I got the call from the pump rep today and Kacey's pump is officially in the mail. It was shipped today and we will get it next Wednesday. I got off the phone and cried! We've waited for this moment for the last 8 months and it's finally here! I called her CDE because we're still battling some really nasty highs. She went on and scheduled our Pump Training while I was on the phone with her. Kacey will be hooked up to a saline trial on March 20th! We go back on March 24th and she will be hooked up to insulin and be an "official pumper"! They are not making us do a whole week of saline so thats very cool! So she won't have the pump in time for her birthday but she'll be hooked up VERY soon!

Now about those highs....
We're really fighting the D-Monster the last few days. She's had some really nasty highs that are making her grumpy, tired and ready to eat everything in sight. She's called me from school the last 2 days in tears because it's making her feel bad. She doesn't have a cold...no sign of a runny nose or a cold even coming on....no sign of illness at all! (Knock on wood) Her teacher said she could tell Kacey wasn't feeling well and she wasn't acting herself with all these highs. It's affecting her grades in a MAJOR way! So we need to get these under control fast!

Here is what she's gone through since yesterday morning....
3-4-09
6am- 191
10am- 320
10:30am- 261
12:30pm- 211
2:30pm- 312
4pm- 222
5pm- 145
7pm- 341
8pm- 310
9pm- 357
10pm- 300
3-5-09
12am- 173
4am- 162
6am- 178
10am- 261
12:30pm- 242
2:30pm- 367

Ummmm can you say DOSE CHANGE! Her CDE said to leave the Lantus at 14 units and then we are changing every mealtime dose.
Breakfast will be 1:8 instead of 1:10
Lunch will be 1:10 instead of 1:12
Dinner will be 1:10 instead of 1:12
Snacks will be 1:10 instead of 1:12

Hopefully this will help bring those numbers down! I feel so bad for her because I don't know what else I can do? There was mention in the comments yesterday of puberty. Holy cow! Could this be happening already? How would we be able to tell if she was?

What Do You See?

Take a look at this pic I took with my phone... What do you see?
Some days we get so wrapped up in what is going on in our own little world and we fail to really see things around us. For 10 years, I've driven the same road, the same time each day (taking Kacey to school, going to the store, etc) and I've never seen this before. Some would call it a simple telephone pole but if you look beyond the pole, I call it a sign. No, I'm not talking about the street sign in the picture. I'm talking about the shadow reflected on that hill. I was stopped at the stop sign and for the first time in 10 years, I noticed it. This view had such an impact on me this morning and I had to take a picture of what I was seeing....there it sat on a hill of melting snow....shining brightly in the sunshine...A CROSS! It was as if the shadow was standing out for me to see. The meaning of this sign came to me on a rough day but it also, once again, reminded me to have faith. It reminded me that no matter how bad it gets, I can trust that things will work out just fine. Just when I feel like I'm ready to fall....my faith is renewed!

This afternoon, I received an email from someone that I will call "True Friend". I know she doesn't want her horn tooted and I will not share her name unless she wants it shared but I have to share the power of the friends I've made on here. I need to go back and share a bit of my story first.....

I was stressing over the coverage of Kacey's supplies. Finally after 4 hours of playing a game of cat & mouse with United Healthcare reps, I was able to speak to someone that knew more than the other reps did at Customer Service. She explained to me that I should call the Cozmo rep because they would know how things were going to be covered since they are the ones that are filing the paperwork for her pump. I called the Cozmo rep and she went on to explain to me that we have the $3500 cap and that means we exhaust the benefit for the year. I got choked up and she went on to tell me that for 3 months of supplies it would cost us $640 but we had the first 3 months paid for because they would be shipped with the pump. She also tells me she is still waiting for the "Letter of Medical Necessity" to be signed. WHAT?!?! She said they filled it out but the doctor forgot to sign it. Just my freakin luck! Nothing about this process has been easy!! So I told her I'd find out what the hold up was? So I hang up with her and then I get a call from Kacey....yikes...she's using the teachers cell phone! She proceeds to tell me, "Mommy, I feel like poop but the other word." (LOL she wanted to say she felt like shit!) I felt helpless! Her blood sugars have bounced in the high 200-to-high 300 range all day and even doing corrections, she couldn't get them down :( So I called her CDE and I told her about the numbers Kacey is having. I have to fax sugar numbers in to the office and she will call me first thing tomorrow and let me know what to do. So then I tell her about the letter not being signed. She pulls the letter and says "It's signed! I don't know whats going on?" So she fills out a new one as I was speaking to her and faxes it right over to Cozmo. I went on to explain to her what was going on with the pump supplies and she tells me the same thing about paying out of pocket. She's going to check with the other nurses and pump reps tomorrow at the Pump Class and see if there is anyone that knows how we can get around this. I hang up with her and plop down in a pile. By this point, I'm feeling like the Diabetes Demon has gotten the best of me and I'm ready to just give in. I decided to come back on here and check email. That's when I got the note from her.

"True Friend" went on to explain how she had several "extra" supplies (infusion sets, cartridges, IV prep sets, etc) that she knew we could use for the Cozmo and she was willing to send them to us...about 6 months worth...so that means 3 months from Cozmo and 6 months from her...it would get us through til our policy renewed the $3500!! I sat here and I cried so hard because that was the last thing I expected. I cried trying to tell Frankie about it. I have cried all evening just thinking about how generous this gift is! I could never ever thank her enough and I'm so very greatful to call her my friend. Thank you so much "True Friend"! You're a true angel! I've been blessed so much recently and it's hard to put into words how I feel. Once again, I am so thankful to have the Diabetes OC to turn to. I can only hope and pray that when someone else is in need, I am given the chance to "pay it forward" and help them the way I've been helped.

God IS Good!

More Changes

Because we are snowed in, I had no way to fax blood sugars this morning. Last night, Kacey's numbers went haywire! I noticed her downing a glass of water and asked her if she felt ok. She said she did but she was very thirsty... blood sugar check, please! The meter said....YIKES! Her numbers haven't hit the 300's in a while! Hmmm...think Jill, think! Ahhh it's 2 hours post meal. Looks like a possible dose change because her body must be back to "normal" since the flu. We pushed more water and tested an hour later. The meter said.... HOLY HIGH NUMBERS BATMAN! What in the world is going on? Geesh! So we tried more water...and waited...she dozed off and I tested her at 10pm. The meter read... 220 mg/dl. So I knew I could catch a few hours of rest before I had to test again. Set the clock for 2am... tested... 180 mg/dl. Whew! I can sleep :) This morning she woke up at a 168 mg/dl. She did fine at breakfast but 2 hours post lunch was a disaster! She was screaming she was hungry and very thirsty. Test again, please! The meter read..... Thats it! I gave her more water and called her CDE. I explain whats going on and tell her since we're snowed in I couldn't fax blood sugars but a dose change was needed because she was hitting the 300's. I asked to change it back to what it was before she got the flu since obviously she was all better and her body was telling me it was...LOL! She agreed to change it back and see what happens the next 3 days. While I had her on the phone, I asked her about NovoLog vs. Humalog and she had no idea why our prescription was written for Humalog if we were on NovoLog in the hospital. They usually start you on what the preferred insulin for your insurance it. In our case, NovoLog is cheaper and thats what we were started on but somehow ended up with a prescription written for Humalog. The NovoLog pens are a 2nd tier instead of 3rd tier...$30 instead of $50!! Once we start using the vials then it will only be $15! Wowwwww! Thats a HUGE savings for us :) Guess I'm glad I did some research on our insurance's website otherwise we never would have caught it.

Now if I can just figure out how much pump supplies are going to cost us?!?!

Dose Change

I knew it was coming! Our CDE called this afternoon and Kacey's dose was changed.

Breakfast was 1:8 and now it's 1:10
Lunch was 1:15 and is staying 1:15
Dinner was 1:12 and now it's 1:15

She said the flu sorta threw Kacey's body outta whack (LOL ya think?)

She had another great day doing her care in the classroom today. Her teacher was giggling this afternoon because Kacey asked to test because she felt "weird" and her BG was 275. One of the other little boys went up to Mrs. M and said "Thats wayyyyy too high for Kacey!" LOL! She said all the kids are learning diabetes care in class...haha! ~smiles big~ Whatever works, right? I'm so glad things are working out with everything in the classroom.

Kayleigh is taking a Health & Medicine class this year in high school. She is really enjoying the class and it's an opportunity for Kayleigh to learn more about how her body works. She has a project coming up. She has to write a report on a person that did something helpful with medical science. She chose to write her report on Fredrick Banting. She said she thought it would be fun for all of us to learn about one of the people that was responsible for discovering the medicine we use to keep her sister alive, INSULIN. I thought that was very cool! So then she took in the article from the 9 year old little girl that had Type 1 that died in Texas. Her teacher was discussing the article with the class. She went on to tell the class that people that have diabetes are not allowed to eat sugar and how a 9 year old little girl can't think abstractly and doesn't understand how the disease really works. Kayleigh said she could feel herself getting madder and madder until she finally raised her hand to set this teacher straight (LOL!) She explained to her teacher that her sister would be 9yrs old next month and and she DOES understand her care and the statement about diabetics not being able to eat sugar is FALSE! She went on to say that there were 2 things her sister couldn't have unless she was low and that is regular soda and real fruit juice (orders given by Kacey's Endo). She can have things with sugar in them as long as she gets a shot of insulin for it. She said her teacher was dumbfounded and replied with "Oh ok." WOOOOHOOOOOO! GO KAYLEIGH!!! Kacey's big sister attempted to be an advocate and speak up to educate someone that is obviously misinformed...and she's a teacher! (proud Mommy moment)

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.

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!

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!!

Aggressive Dose Change

I got a call from the CDE yesterday afternoon and she said they got the faxed blood sugars and they are going to make the aggressive dose change. The I:C ratio is now 1:15 at EVERY meal!! YAYYYY! Finally! I've been saying we needed this change for a while now :) OK...so dinner dose was the first we did it and she was a 156 before bed! She woke up at a 196 so if that continues then it wouldnt surprise me if they made the Lantus change next week. I'm just happy they made the aggressive change so she can come down out of those high 200's-300's. She was all smiles this morning so thats a good sign!

I'll update later on how the numbers went :)

Adjustments

I finally got a call back from the CDE about the faxed blood sugars! She said she wasn't sure why I wasn't called but Dr. R didn't want to make any changes....WHAT?!?! Ummm so the "Supermom" part of me stood up and said "Well I really think a change needs to be made!" (keep in mind I already made the change at lunch and hadn't said anything because she was having sugars in the high 300's just 2hrs after eating) So she asked me what I thought needed a change and I told her if she looked at her chart then2 hrs after lunch she was bouncing into the 300's and I felt that was a sign that she needed a carb change! Her response... "Great job Mom!" Ahhhhh ~does a happy dance~ So she told me to change the carbs for lunch and then fax blood sugars in on Monday and if she was still staying high through the day then as long as she wasnt sick they were going to take "a more aggressive approach" ....FINALLY! Whew! She said they didn't want to change much because of her being sick. They werent sure how many of the highs were because of the cold and how many were from food so they just left it. Yesterday she spent all day in the 200's...my "Supermom" part of me says... Lantus change :D LOL...lets see what the doc thinks when I give them last weeks sugar numbers! Haha! Ya know, there is this part of me that really gets this! I mean I really do understand it now... I understand the dosing....I understand the carbs....I understand the slow changes...I understand DIABETES! Now I dont understand why she goes from a 60 to a 495 in 15min...LOL but I'll get there! I feel comfortable with tweaking her dose...Kacey is comfortable enough to test often (so we can watch the changes)... and Im actually proud of both of us! We've come a long way in 4 months and I think we're doing pretty darn good :)

All that being said....its 7:30am and time to go test her for the first time this morning!

Have a great Sunday!

ANOTHER Dose Change!

~sits up and tries to smile thru gritting teeth~

Yep...ANOTHER dose change! The CDE called and said the doc wanted to change her breakfast carbs from 1:20 to 1:18... hmmm isnt that what I wanted to do already? LOL! She said it seems Kacey's running high after breakfast.....DUH! Haha! Geesh...if I dont laugh about it then I'll cry!

We had another drop this afternoon...not as bad...but a BIG drop. She was a 287 at 3pm and she just tested for dinner and was a 79! Instead of treating a low, I just had her eat dinner. This way I'm not stuck in the situation I was the other day with overcorrecting. She said she feels fine so thats always a good thing :)

As for me, I picked up my application this afternoon and I dropped off 2 of the 3 letters of reference that I needed filled out. I was at Kacey's school all day again today :) It really has lit my teaching fire again and I really like being there. It also makes me feel better knowing that Im just an announcement away from getting to her. I will be up at school every day the rest of the week because her school nurse, Mrs. H, is still out of town. Her Mom is still really bad off *sad* I'm still keeping her in my thoughts and prayers.

~*~JILL~*~

How Low Can You Go?

It seems like everytime I have a rant at Diabetes, he decides to back off because he knows how damn frustrating it is! Last night Kaceys bedtime blood sugar was a 149!!! The lowest shes been in a while! Even though it was a good number, I decided to put on my Secret Spy costume and see if I could catch that criminal named Mr. D.P. (Dawn Phenomenon). After Cara's mention of it, I did some research and it was saying to test at 3am for a few days and see what the numbers are. I think this will also help the Endo make changes to the Lantus as well...geesh...wouldn't it have been just as easy for the CDE to say "Mom, try doing 3am checks for us so we can use those numbers to help us with her dose" ~sigh~ Anyway...her bedtime check was 149 @ 8pm ... I checked again at 11:30pm and she was a 214 .... then at 3am she was a 170 ... and woke up at 7am with a 142! So shes spiking up toward the midnight hour and then coming down? She was a 182 for lunch and still smiling. Im glad to see her feeling better tho! I will continue to do the 3am checks until I fax numbers on Monday and then see what the doc says then. Hopefully that will give them a better idea of how to change things. Wooohooooo!

As for me... with the school nurse being out, I've been up at the school volunteering because its easier than running back and forth. That "teacher" part of me is starting to come alive again! I taught preschool for 8 years and then when I had Kacey I quit to be home with her. A part of me always wanted to be back in the classroom but then I liked having the freedom of being at home. I've been in the classroom with 1st graders and after a few days they're hugging me and waving to me in the hall...I'm not just "Kacey's Mom" anymore... I'm "Mrs. West" :) So...I've made the decision to go back to work. Yeah I know... it was a long and hard decision...but I'm going to put in to substitute for now. That way I still have the flexability...but I will also be at the school with Kacey if she needs me. I figure if I'm going to be in the class I might as well get paid for being there! I'm really excited about going back. I redid my resume...in the process of getting my 3 letters of recommendation and a copy of my transcripts...and I'll drop by on Monday for the application. For now, I'll continue to volunteer :) I'm working in the office on Monday and helping the principal with some preparations for the Fall Festival. So lots of excitement here and I've really been happy the last few days... its been a long time since I've felt like this!

~*~JILL~*~

Dose Change...again!

I got a call back (finally) from Kacey's Endo...or should I say CDE. I hate when I can't talk to the doc or CNP. Anyway, they reviewed the faxed numbers I sent and they are going to increase her Lantus from 10 to 11 and then change the dinner carbs 1:18 and leave breakfast and lunch carbs 1:20. Why dont they just change all the meals. OK... Im really frustrated because yesterday school called me at 3:15pm and said Kacey was a 360 and feeling bad and wanted to go home. I got there and Kacey had the "I feel miserable" look on her face and so when we got home she went right to her bed and ended up sleeping for nearly 2 hours. When she woke up it was dinner time and she tested... 153!!

Numbers yesterday were...

262 @ 7am

271 @ 8am

283@ 1pm

360 @ 3pm

153 @ 5pm

237@ 6pm

145 @ 8pm

then 210@ 7am this morning

Now...why am I frustrated? Cuz the dinner dose isnt the only one that needs to be changed! Shes high in the morning when she wakes up...for the last week she wakes up over 200 every morning and then shes high at all 3 meals! I keep screaming at myself because I want to change the dose myself but I know the doc has his reasons for doing what he's doing. I just hate her staying high all the time because it makes her feel so damn bad! She missed 2 days of school last week because she was in the high 300's and just wanted to stay in bed with a case of the "grumpies". So do I change the other meals 1:18 and see what happens and then tell the doc what I did.... or do I leave her like this and wait for the doc to do it? GRRRRRRR!

Oh yeah...and did I mention I always hated Math and now I see numbers in my freakin dreams!!

~*~Frustrated Mommy~*~

This Evening....

This evening has been pretty calm here. Kacey's levels today were all over the place again. She woke up at a 142...then by lunch she went to a 262...this afternoon she was complaining of a tummy ache and she was still at a 252 and then within an hour she dropped to an 85 and she felt shaky....then she went up to a 95 and then to a 127. So she bounced all over today!

I got the info packet in the mail today from Medtronics. Im super excited about the whole pump idea! Ive been up late the last 2 nights doing research and reading all about it. I think the pump will solve our issues with the nurse and the whole dose thing. Also I think it will be much easier on Kacey! I got the info on the CGM as well and that looks super cool! With something like that she'd be able to monitor her sugar in class and know when she's dropping without having to leave the class or someone get her to the nurse. Anyone use the CGM system? I added that to my list of questions for the doctor on Monday.

Kacey is doing really good in class...despite the "Tigger-Syndrome" ...haha! She REALLY likes her teacher...and so do I!! She is just so compassionate and caring when it comes to Kacey.

On another good note, Kayleigh is feeling better...still a little stuffy...but her cold is going away. She had another hockey game last night and they won 4-0 ...YAYYY! She didnt play as much as she would of liked to because she told the coach she was feeling too bad. So the coach gave her a break and then put her back in. She has 3 games next week :) Michael & Tracy came to the game and Tracy is T1 too and she brought us some really good recipes to try. Kay is having "kitchen withdrawals" and is ready to get back to baking again! Tracy's been really informative with the pump. We really didnt know alot about it and she's got the MiniMed too! It's amazing how lives change when you have something in common! Who'd of thunk it? LOL!

Til tomorrow,

~*~JILL~*~

OK....Now what?

LOL the pic of this glucose monitor made me giggle!!

Soooooo... Kacey woke up this morning at a 157...which is great! Then by lunch she was up to a 237...yikes! So I thought maybe it was just because of what she ate. Well...by dinner she was a 217 and she just tested for bedtime and it was a 257...good grief! Here we go.....back on the roller coaster once again! So now what does this mean? Well...2 things....either the dose/carb change was too much...OR...those last few cells in her pancreas that were working, have now stopped working and that means shes rounded out of her honeymoon! Not sure what the doc will do next week?

We made it thru the storm with no damage :) It rained most of the day and so it ended up being a lazy day inside. I was able to have some "Mommy time" and had time on the computer. Once the rain let up, Frankie and the girls went to pick up some movies before the next batch of rain came thru. I finally got to see "27 Dresses" ....wonderful movie!

Been feeling like crap most of the day! I think Im coming down with a cold....or my allergies are starting to kick up :( Ive just felt achy and Ive been in my jammies ALL day!

I'm off to bed!

Goodnight :)

~*~JILL~*~

Dose & Carb Change

Got a call from Anne, the nurse at the Diabetes Center, and she said the doc said he wanted to decrease Kacey's Lantus again to 13 units...but he also wanted to change her carb ratio to 1:20 from 1:15...so thats GREAT news! She said Kacey is definately in her honeymoon period and now its a waiting game til she comes out of it. Once she does then we will get a good idea of what her dose will be and we can think about getting the pump :)

She had a better night last night....and I got a little more rest :)

Went grocery shopping today...ugh! I got Kacey a few of her favs... Goldfish and mini Nilla wafers seem to be what she wants at the moment. Also got her the new Jonas Brothers CD and she's played that song by Nick called "A Little Bit Longer"over and over! He wrote it about his diabetes and so it means a little more to her :) LOL...altho hearing it on repeat is getting old! I went on and put it on my iPod and so I let her listen to it from there so it was in her ears and not mine...haha!

Got a parent meeting for JV hockey tonight. Im soooo tired of running! Frankie asked me what I wanted for my birthday and I started to cry and said "Just one hour peace and quiet" *sigh*

So thats all for now!
~*~ JILL~*~

Another Dose Change

Well...Kacey woke up with ANOTHER low this morning... 62 :( So I called over to her doc's office and they called me back within 5min. They've lowered her dose from 20 to 17 and we have to try that and see if that keeps her sugar in her normal range. Kacey was excited because that means its not such a huge dose...LOL! Not sure how long this honeymoon is gonna last?!?! She had a 74 at lunch and then jumped to a 144 for dinner. So tomorrow we will know more about how the new dose is working.

Been a relaxed day today :) While I was stressing this morning, Frankie took it upon himself to go make us all breakfast. I was thrilled to see him picking up the slack! After breakfast, I decided I needed to get a bit of cleaning done around here and as I was cleaning I saw him following my footsteps and he scrubbed the bathrooms, cleaned up the kitchen from breakfast and dusted in our room. Today is the first day I actually havent felt "rushed". Maybe it was having his help...maybe it was getting comfortable in our routine...whatever it was Im just glad I wasnt feeling like I was running in circles!! I think he finally realized today how hard all this has been on me. We had a really good day at Busch yesterday and today has been another good day. After we cleaned up, we went to Grannys for lunch. His Granny & Aunt actually went and got frozen pizza for the girls and they had read the labels!!! I was SOOO proud of them! Thats a huge step for them to actually look at the labels til they found something that Kacey could have too that didnt have too many carbs. Made me feel really good! I also talked to them about his other Aunt. Her diabetes is very out of control and Im actually scared for her because her legs are sore again and shes got another UTI/bladder infection. Her doc isnt an Endocrinologist and I fear that it wont be long til she loses her legs and when that happens you cant turn back the clock. So I got the name of the doc that Tracy goes to and I called his Aunt and told her all about the doc. Shes a female so I think she will have a bit more sympathy for her. I told her I would call and get her the appt and take her over there if she would go....she said YES! I was floored!! Her own kids have tried to get her to go and she put it off but I think now she sees that its to the point that its really out of control and I told her I want her to be a good role model for Kacey and if shes not following the doc then how is Kacey going to learn how to manage her diabetes. So I think it just struck her the right way!! So tomorrow I will call and make the appt for her :)

Well I guess thats it for now! I'll keep you all posted :)

JILL

Follow Up Appt @ CHKD

We had our follow up appointment at CHKD this afternoon. This was the first time we had ever been to the sattelite office so it was really nice! Makes it much easier to go there instead of that long drive to Norfolk!!

OK...sooo ...I asked what Kaceys A1c was when we got to the hospital and it was 10.5% (not good!) The nurse we spoke to was VERY nice and she explained things soooo much easier and in terms that Kacey could understand :) We signed up for the carnival on the 11th so that should be tons of fun and we heard some exciting news as well...they are giving away tickets to the Jonas Brothers concert...woohoo! The girls were thrilled! They decided to change Kaceys dose of Lantis from 24 units at night to 20 units. Seems she's hit her "Honeymoon" stage and so shes not needing as much insulin. No idea on how long this will last....somewhere between 2wks to possibly 2 years....yikes! I asked about the pump and she said that once Kacey got thru this honeymoon stage and her levels stabilize then we can think about the pump. Not sure about Kaceys feelings on it yet. She made mention to not wanting it because she wanted to just take her shot and get on with it and not worry about pumping. So I guess we'll see when the time comes.

A bit of good news....Kacey took her shots in her tummy today and she said it was MUCH easier! We talked to the nurse about it and she really made a big deal of it to Kacey and it made her feel really good! She told Kacey to try doing the Lantis in her tummy too because it wont hurt as much since shes got that little fat roll there. She could also take it in her hip fat. Then she encouraged her to try her finger sticks herself. So this evening she took her Lantis in her tummy and didnt even cry! Then she did her own finger stick!!! I was sooooo proud of her and how far shes come in just 2 weeks!

On a sad note....Kacey made me cry. After all her shots and finger sticks...she was getting ready for bed and had this sad look on her face. I asked her what was wrong and she teared up and said "Mommy why do I have to have diabetes?" Well I choked up and couldnt hold back tears and the only logical answer I could give her was "Because God thinks youre special! I bet he thought you were such a big girl and he knew you could help other kids your age and all the grown ups in our family learn more about diabetes." Geesh....what else could I say to her? I ask myself the same question every day.... God, why us? Why Kacey? and one day Im sure I will know the answer but right now its just not time for me to!

OK...til tomorrow :)
Jill