Monday, October 8, 2012

Alone In A Thousand

It wasn't until last week that I realized something. Kacey is in a middle school of over 1000 kids and she is the ONLY Type 1 diabetic in the school. What are the chances? ONE in ONE THOUSAND! She was a bit disappointed that she didn't have anyone that shared T1D with her this year. Last year there were two boys and although she wasn't close with them, they would run into one another in the clinic and give a little wave and compare numbers. This year there is no one. She's all alone. ALONE. Yeah, she's feeling that lately! As she gets older, she knows that she is different yet there is no one to turn to that really understands what she is going through. I try, I really do try to understand but I really don't know what a nasty high or dreaded low feels like. Her sister tries, and she does know what a low feels like but it's not the same. There are days I feel completely helpless because T1D just isn't common around here. I can count on one hand how many we know. Out of those 5, 2 of them are older boys, one is a little girl, one is a grown woman and the other is young lady. No one Kacey's age near where we live. Our hospital for our Endo is an hour and a half away and we can't participate in those events we'd like to. Helpless. Alone. Heartwrenching! I wouldn't wish T1D on anyone but I find it shocking that out of our entire county....all 6th & 7th grade in our entire county goes to the same middle school....and Kacey is the ONLY ONE! She did make one friend this year that has a sister who is T1D and she knows a little about diabetes but she's been very interested in Kacey's pump and Dexcom. Her sister is on a pod so she had not seen a Ping before. But it's still not the same. I feel bad for her some days because I know that she just wants to have a friends that KNOWS what it's like. Kinda like the whole reason I started find other Moms that KNOWS what it's like! Do your kids have other T1D's in their school? Do they spend time together? If they don't how do you help them find others?

Tuesday, October 2, 2012

Daisy Dex Is Back!

I’m not sure if it’s the cold medicine or if it’s everything running through my brain but I can’t sleep tonight. I’ve tossed and turned, played all the games waiting for me on my iPhone and I’ve paced the floor quite a few times. I’m restless! Why? Why can’t I just relax and rest this body that is fighting off this nasty fall cold? Excitement? Ummm…yeah just a little! Tonight I finally convinced Kacey to go back on Dexcom. She took a break almost a year ago. For a 12 year old little girl, there were so many factors that went into giving her the break. First, it’s her body, right? I’ve always felt like Dexcom was a choice. She can’t choose to not have diabetes. She would never choose to go off her pump. But somehow Dexcom is a choice. She doesn’t HAVE to wear it but it’s REALLY nice if she does. We jumped into the Dexcom system with both feet and I think she may have had a bad burnout. That’s ok! She was going through several changes. One of them included “hiding diabetes” with all her cute little outfits. It’s hard to hide a pump and when you add in the size of Dexcom then its even harder. Kacey had started to thin out so she wanted some tighter shirts. She wanted the pump pack that kept her pump close to her body, not the cute little pouches that showed it off. She was growing up! L Friends were really taking notice of her outfits but they were also taking notice of sensors too! Middle school kids are cruel and mean in todays world. Kacey wears her Dexcom sensors on the backs of her arms and let’s face it….after a week of a sensor stuck on you, it starts looking pretty crappy! Stuff sticks to it, it looks fuzzy and gunky from trying to add more sticky to it and then if you add IV prep over it, it looks downright nasty! So when she was constantly asked, “What is THAT?”…”How come you haven’t washed that off?”…”Why do you have to wear that every day?” ….she wanted a break. She was in middle school, she didn’t want everyone to know about her diabetes because she didn’t want to be known as “THAT girl” and she wanted to choose who she told about such a personal issue. She told her close friends and she made some lasting friendships but she didn’t want everyone knowing about her diabetes. It was a hard pill for me to swallow. It was HER issue but WE were going to tackle it together. The first step we made was taking a step back from Dexcom. I hated the decision but I knew it was something we needed to do. She needed a little more “freedom” before she ended up really burning out and rebelling. This meant more sleepless nights, flying blind and I thought it would only last a month or two….NOT ALMOST A YEAR! Scared…yeah that doesn’t even begin to describe it! She’d drop to the 120-130 mark and I’d start to get paranoid. Was that up? Was that down? Is she gonna fall fast? I’d give her a snack and not cover it and send her soaring into the 300’s and then I felt like shit because I knew I should have waited. It was nasty! Her A1c shot up again…ashamed….yes….a 9.4…sickening! I tried to sit her down and explain that we really needed to try Dexcom again to get things under control but she didn’t want to even listen to me. She would snub her nose and remind me of it being HER choice. We’d have a power struggle and she would win. After all…it is HER body. All I could do was suggest that it was BEST but she didn’t want any parts of it. We made it through summer…pool…lots of playing…and then the start of school. Believe me, I was scared about her starting without it. I knew we’d managed to fly without it last year but would we manage another year? I brought up the issue of wearing it again a couple of weeks ago. She’d had some crazy lows out of nowhere and was waking up low. It’s a crappy start to the day when you start out low and can’t seem to jumpstart your body. What’s going on? Is it the cold? Is she due for her period? Is it the correction from 2am? So many factors were playing in and there wasn’t a consistent pattern. I HATE THIS! I hate when I can’t figure it out. So I asked this….”Kacey, have you given any thought to possibly wearing Dexcom for a few weeks so we can figure out what is going on?” Thankfully I was sitting down when she responded with…”You know Mom, I was just thinking about it yesterday because I’m starting to not feel lows again and highs feel like lows” ***INSERT SILENT SCREAM OF JOY*** I had to make her think it was all about her….her decision…her choice to wear it…she’s calling the shots. So I told her I thought she might want to think about it some more and when she was ready, we could put a sensor on and take a look at what her body was doing because a lot has changed since she wore it last…she’s taller, she’s thinner, she’s more active, she’s got her period regularly, she’s going to be doing Marching Band, she’s got new teachers, she’s got new friends….and she’s grown up! ;) She took the bait! She agreed that she was older and she understood how important it was and she was willing to try again. THANK YOU JESUS!!!!

So tonight was the night! After dinner, I got all the supplies layed out and told her I was ready whenever she was. She stalled for about 10 minutes and then came in to get me. It’s been so long since she felt that sensor go in. She’d forgotten what it felt like! We did the prep and insert with no issues and then she turned to me with a smile that slowly faded to a straight face. “Mom, I hope I don’t get asked a bunch of questions.” I smiled back at her and gave her a wink and said, “Well if you do, just tell them you’re a spy!” We both giggled and she hugged me and thanked me for putting it on. We both excitedly awaited the 3 hour calibration and when she got a vibration and beep to enter 2 BG’s, she squealed with excitement. She entered them in and there it was….that beautiful arrow with a 122! Ohhhhhh how I’ve missed that little arrow!

So for an hour, we watched it stay steady, turn to rise straight up and then turn to double down. I’m looking forward to a week of good data to help tweak these basals and see whats going on within that sweet little body of hers. For now she is a 156 with a steady arrow but I now have to resist the urge to run in there and press that little button and see what she is without pricking her finger. I MUST get some rest! Thank you Lord for helping her understand that this piece of equipment that she has a love/hate relationship with is a true security blanket for her mother. Thank you for giving me the wisdom to help her understand the importance of it and for helping me show her that she is more grown up than she was a year ago. Lord please help the kids at school to understand that just because she beeps, wears funky things on her arms and pricks her fingers, she really is just a normal child wanting to fit in. Please help them to hold their tongues that would normally make comments that they don’t realize are hurtful. Please help the teachers to understand when the beeping gets frustrating for them, it’s ten times worse for Kacey. And Lord, please give me the patience to analyze this data to make changes to her insulin needs in order to keep those sweet little organs of hers safe. In your most precious name….Amen!

Goodnight Everyone!

5 months

NO! I'm not pregnant! 5 months....thats over HALF of a pregnancy though!

Gosh! It seems like it's been longer than 5 months since I've been here but its been even longer since I regularly blogged. Why? Why can't I find words to write anymore? Why don't I take the time to tell everyone about my day? Why am I so exhausted by the end of the day? Then when I find time I feel like I have diarrhea of the mouth and it turns out to be this long drawn out post that no one wants to read anyway!

Kacey started 7th grade! I was a nervous wreck when I met with all of her teachers, which btw were VERY interested and asked lots of questions. I was worried for Kacey because it was a new group BUT I know she is a responsible and well rounded little girl that is growing up right before my eyes. She WILL be I need to KEEP CALM and BREATHE!

My last post was on our anniversary. That was MAY! Geesh where did the months go?

Well we made it through Kayleigh's final year of school and graduation without too many hiccups. I'm so happy we are done with that school! She got a 97 A as her final grade on her cookbook project. We threw her an amazing graduation party with 80+ people at OUR HOUSE! It was awesome and everyone had a great time. She was swamped with cakes to do the two weeks following and so it took a little time to settle in that she was really out of school! She has started dating a pretty amazing guy :) His name is Chris and I think he's gonna be around for quite a while. She really wasn't interested in dating and actually turned him down...(glad she decided to give him a chance because we adore him!) She took a two week trip to upstate New York and had a fantastic time. She's stayed pretty busy with her cakes over the summer. After 2 interviews that didn't go so well, she's pushing forward with her own business. She is now a .COM! Check her out...  It's hard because she knows what work she is capable of but the two places she interviewed with want her to sign a no compete clause. She's had her own business for 4 years, built her own clientel and now she would have to sign it all over to work for $7 an hour. THATS TOUGH! I know God will lead her in the right direction and the right thing will come open for her. She's waiting til next year to go away to Pastry School.

I met with Kacey's teachers the week before school. I must say...this is the first year that I've had so many teachers ASK the questions before I actually got to the information. Do you realize how excited that makes this nervous D-Momma? VERY! They were all very thankful for the packet with her 504 Plan, Health Care Plan and cheat sheets. They all "knew" about diabetes but they had so many questions about Kacey in general. All of them seem so very nice and I'm excited that Kacey left there so excited. One of her teachers is a girl I went to high school that was kinda funny! Overall, I think we're in for the most awesome year we've ever had. I loved her elementary school but I REALLY love the middle school she is in now. I will treasure each moment this year because she will move to another school next year for a year and then she will be off to the same crappy high school that Frankie and I went to and Kayleigh just graduated from.

As for me....well for the last 2 months I've been so busy. My Mom had a total hip replacement at the end of July so my days of August were been spent taking care of her. She thinks she was a burden but it's my job to care for her, right? She was so used to caring for herself and always doing for others so when she was totally relying on me to do everything for her, she got herself all upset over it. She's made a remarkable recovery and it's great to see how far we've advanced with technology but she's still got a way to go. She's back to doing things for herself and driving herself but she's still having a hard time with a few things...sleep mainly! She can't seem to get comfortable sleeping or sitting so thats been a bit of a burden for her. She went back to work for half days but she still gets exhausted pretty easy. I keep having to remind her that even though they had her up walking only 4 hours after surgery...she had MAJOR surgery and it's only been 2 months!

Vacation....yep! I took the girls to Washington DC for a girls weekend away. It was a fun trip despite the rainy weather. They had a great time seeing everything and want to go back for more touring later. I also had a chance to take Kacey to Lucky Lake for some gem and mineral mining. That beats DC anyday! Haha! It was beautiful and since we're all "rock junkies", it was a perfect trip for us. Kacey actually found some aquamarine (her birthstone) and we used our "free cut of any rock" for that and they made it into a gem to place in a ring or necklace. That was very exciting!

I want to try and get myself back on a blogging kick so I am going to try and make time in the evening to write and have it post automatically :) I just got so turned off when I had all that blog drama before and it's been hard to sit down and write like I used to. I know I need to because my whole head feels like its going to explode some days. I feel like I've pulled away from the DOC when I should be pulling closer. I feel out of the loop and sometimes it's hard to jump right back in where I left off. Depression, Illness, Busy all plays a factor! I'll bounce back....just gotta MAKE time!