Tuesday, November 16, 2010

Today's Perspective - Update

Wendy - thank you for your prayers and comment. And thank you to everyone who has kept Baby H in your thoughts and prayers. Please keep them coming. He has undergone his first surgery and is still recovering. They continue to discover exactly what is going on and are trying to treat one problem at a time. The good news is that he is getting stronger and they are able to process the information they are getting to ensure that they do the right things. Mom has been able to hold and snuggle with him which has its own strong healing powers unto its own. He has a tough road ahead of him, but everyday brings new information and some positive progress as well. Thank you again for your thoughts and prayers.

Sunday, November 7, 2010

Today's Perspective

Every year since Grace's diagnoses, We've participated in the ADA's Tour de Cure. We've already created our team for the June 2011 ride and I've been extra excited because both my girls were going to ride with us this year. We got a tag along bike and a new carrier for the 16 mile ride.

I've been getting together my personal fundraising page over the last few weeks. With it being diabetes awareness month, I decided to be "real" about living with diabetes. I put together a bunch of emotions, the fear and anger, that a parent faces with a five year old diabetic child. We've all discussed the truths of living with diabetes in DOC. I was putting it all out there. The things that might not show up on a Type 1 Google search.

This morning I was stopped in my tracks. I still can't process the news I got this morning.

A dear friend of mine gave birth to her first child last night. He was immediately put on life support and transferred to another hospital. He will, at a minimum, have two heart surgeries. The outlook does not look good at this time. My friend has not gotten to touch or hold her newborn child and only saw him for a minute.

I am going to take this time to be thankful for the life that we were given. It is rarely easy and maybe not the one I would have chosen for Grace, but I've held her, loved her, hugged her and watched her grow into a five year old little girl. I will not take any of that for granted.

- Posted using BlogPress from my iPhone

Tuesday, November 2, 2010

Time to recognize

Wow - October has come and gone in the blink of an eye. We had an extremely busy month filled with family events, work, doctors appointments, flu shots, traveling, school parties, house parties, a fieldtrip and some trick or treating to finish it off right. We made it through somewhat unscathed and had some fun too. Everything was happening so fast that I didn't have to much time to worry. There were only a couple extreme highs (400's) and a handful of mild lows. I don't know if it was because we had no choice but to go with the flow and no time to stop and over analyze, but Grace's BS numbers were really good most of the month.

We were doing a lot of testing throughout the days, so we caught any numbers that were falling and avoided problems, but this is where I am getting concerned. Very early on, before Grace was even four, she started to recongnize her lows. Of coarse not every one, but by this year I was really feeling comfortable with her ability to tell me when she was low. We have been working on playtime. She might feel low, but she doesn't want to stop playing to tell me. So I've been really trying to reinforce how important it is to let me know and if we do quick sugar test and maybe a chewie (starburst), we don't have to sit and rest while we wait for her sugar to come up. This is very understandable problem for a five year old. I love that she is getting out there and playing with other kids and having tons of fun. I just watch a little more and test every 30-45 minutes. Problem solved. But this month we had probably four or five lows (60's-70's) that she didn't recognize. We only caught it because it was time to check for a snack or meal or what not. This is very scary to me. Even after she tested low & I asked how she felt, she said fine. She didn't feel low. I thought we were lucky because she was on top of recognizing her lows. Maybe it was all of the excitement and emotions of the month? With the holidays ahead of us, we will continue to test, test, test and remember to take time to slow down a little.

Thursday, October 7, 2010

If you don't have one - you need one!!!

OK - So I thought I'd participate in the NO D Blog Day. What a perfect time to admit to myself, and everyone else, that I have a problem. Yes, a serious addiction. I keep something attached to me at ALL time. Monring, noon and night. It never leaves my side. If I go to the kitchen, it usually comes with me, if I go to bed, it sits on my bedside table. I get seperation anxiety when we are apart. I think I need an intervention.

I am talking about my iphone. Yes, my iphone. I truely feel lost without it. I use it in EVERY aspect of my life. I do not know how I survided without it. I'm surprised I wasn't walking in circles (OK, I still do that, but you get what I am saying). If Apple needs a spokeswomen, I am that person. I think everyone should have one. Let me tell you about the ways I use my phone and about a few of my favorite apps:

  • Of course email and internet = anytime access to www.calorieking.com
  • Social apps: Free RSS feed (anytime access to some blog reading), Blogpress (to post to my blog) & Facebook. Also, just last night I found a new app - Tango. This is video calling for those in my family that won't update to the iPhone 4 (I think I'm an iPhone snob too). My girls love to video chat with G'ma.
  • Our Groceries - this holds all of our families lists: groceries, Target, Walmart, and Andee's misc. stuff. The GREAT thing about this app. is that my husband has it on his phone too. Our list sync whenever either one of us adds something or crosses something off. LOVE IT!
  • Accounts - yes, I even have my checkbook register on my phone
  • Walgreens app. - for any prescription I might need to refill
  • Restaurants app. - I won't mention why I use this ALL of the time, but it does have all of nutritional informations (carbs. and calories, etc) for just about every restaurant chain. LOVE IT!
  • Then there are shopping apps. (Ebay, Groupon, etc.) and recipe apps. (I wish I actually used these), motivational quote apps, traffic apps, realtor apps., sports apps. , book apps., music apps, picture apps., Christmas list apps. and more and more and more apps. . . . . . I could go on if you like :)

Ok Ok I'll stop now. I think you get the picture. I really love my phone. Oh yeah! It is a phone too! I can actually make calls - which I rarely use. Weird isn't it?

Love my iPhone.

If you don't have one, I really think you need one!

Wednesday, September 29, 2010

New issues

I've been reading a handful of blogs for over 2 months now. Reading everyone's stories and experiences (the good and bad, the highs and lows, and the funny and scary) has been . . comforting? I hate to say that someone else struggling gives me any kind of comfort, but I can truly sympathize with so much of what I have read. Maybe encouraging or inspiring is a better adjective. The parents, the kids, the caretakers - everyone that deals with T1 24/7/365 are the only other people that can truly understand some of the feelings I have. And being part of the DOC (I am such a dork that typing that made me smile - I kind of feel cool :) - anyway it helps me (attempt) to understand some of the feelings that Grace is having and might have in the future. I hate not understanding what she is going through. I hate even more that I can not "fix" it. But, knowing this allows me to be as supportive as I can and try to hold her hand along the way.

I've had a few heartbreaking diabetes moments this past week. I'm just going to get them off my chest & let the blog carry the weight of a being a parent of a CWD.

- My youngest daughter (16 months old) got her first blood sugar test. The poor thing can't be extra thirsty, have an extra wet diaper or randomly throw up without me thinking it is diabetes related. What sibling, other than a brother or sister of a T1 kid, has to get a sugar test for wanting more juice? OK, to my credit, it was all of these things at one time plus the doctor recording her age incorrectly and saying she was concerned about her weight, and an infection, but still!?

- A conversation I had with Grace this weekend went like this:
Grace "Mommy, your not going to like what I have to say."
Mom "What is it?"
Grace "Your not going to like it"
Mom "Honey, you can tell me anything, what is it?"
Grace "I hate having Diabetes"

- Sunday shopping with Grace. We had a blast, she's a little diva picking out clothes, jewelry and all the accessories to go with it for Mom, sister, and herself. She loved it (me too). Why can't we share a GUILT FREE cookie before we head to the car? Yes she was 303 for some reason, but we did it anyway. She enjoyed every minute of it & I sat there holding back the tears knowing we shouldn't be having that cookie.

- Now Monday night. Our fist meeting to see what the girl scouts are all about. She is sooo excited to be a Daisy. We were talking about the meeting before bed and she said "Oh you forgot to tell the teacher I had diabetes." I told her that I would definitely talk to the leader when we found out who it was. I also told her that I would go to the meetings as long as needed. She said, what will we do? I can't read yet. (She was talking about knowing if she was low). She also said we can just use the same needle over and over and over again. (She can do her sugar tests, but can't change the lancet needle yet). Then she slowly got sadder and sadder and finally said, I don't want to go on the nature hikes. I did convince her that I would be there with her & that she wouldn't miss out on anything . . but still?

- Now my last heart breaker. W were at dinner and getting ready to dose (Gracie is on shots). The temps have dropped this week and we are wearing long sleeves. For anyone else, this is no big deal, but come shot time, She either has to pull her arm out and lift her shirt, pull her pants down slightly for a bum shot or pull them way down for a leg shot. We never hid doing her shots, but as she's getting older, understandably, she doesn't want to lift shirt or drop her pants. We talked about it and mom and dad are going to work on belly shots (she only lets one of her old teachers do belly shots) which will be a little more discreet at a restaurant, but still this is just another thing she has to think about and deal with. I know I'm not the only one, but I so wish my little one didn't have to deal with the BS.

OK - so for now, I am going to let these things go and deal with the new issues that will continue to pop up as she matures. I'll keep supporting Grace, doing the best I can at letting her be a kid.

Monday, September 6, 2010

And yes, it does get easier!

I love Uni-solve. I am sooo glad it actually worked. You never know with stuff like that.

We took G's CGM off on Saturday night. I thought it would be mentally easier on Grace if we took a day or two off from the monitor. I am still shocked how much smoother the removal went. With a little patience it was pain free.

It even had Grace reminding me Sunday evening that we were going to put on the new one. It was such a relief to hear her.

We waiting one more night and put the new sensor on this morning. Smoother than expected. No bleeding, no errors, no problem.

Ahhhh. A good start to a good week ahead. I can feel it!

- Posted using BlogPress from my iPhone

Wednesday, September 1, 2010

This has to get easier!

A bumpy start to the new CGM.

On Monday, it was time to change the sensor. We decided to remove the old one in the morning, and rather than having the nurse have to do the first two calibrations (one after 1hour and one after 2 hours), we would put the new sensor on that evening.

So, in the morning we go to remove the old sensor. WOW - Gracie was in tears. It hurt so bad to tear that thing off. That's something they didn't tell us or give us any guidance on. It was not just like ripping off a band-aid. This baby was stuck on there good. VERY bad experience. So, it was good that we decided to wait. There is no way she would have let us insert a new one.

After school/work, we decided 7:00 would be the best time for calibrations, dinner, snack, shower, etc., etc . This was when everything went downhill - again! We got everything out on the table and ready to go. I started to talk to Grace about the new sensor and she (understandably) started to freak out. Running away, crying, saying NO NO NO. In the last 3 years since her diagnoses, she has (maybe) done this one or two other times. She has never literally run away. By now, I am trying to hold it together. I was willingly causing this my mental trauma in her life. But, I continue to calm her down & help her remember that it was taking it off that hurt so bad. Not putting it on. I promised her that I would look into & order some adhesive remover. I knew it had to exist, I had heard about it somewhere in my pump research. So, after some time, Grace was calmed down and she agreed to give it another chance. Great - here we go.

Mom & Dad: Wait, isn't there another piece that goes with this? I don't know. I can't remember. Yeah, look in the book, we're missing this piece. What piece? Oh the transmitter. Yes - it says right here in the manual in bold caps letters. Be sure NOT to throw away the transmitter. Yep - we threw it away & guess what else? It was trash day. It was definitely gone. Well Grace, no monitor tonight. Grace to bed, mom in tears, dad distraught. What a night. On to Tuesday . . .
I called the nurse to let her know we have no idea what we are doing and after a trip to the hospital, I was able to get a new transmittor. No more replacements allowed, so hope these things don't usually go bad.

Tuesday night: NO, NO, NO. I do not want it on my arm, my leg, my belly OR my bum. Why are we doing this? Moving forward a little bit-->everyone is now calm. Here we go with the insertion. Good, not so bad, done. Or are we? The actual sensor was pulled away from the "sled". We really do not know what we are doing. So, we put the transmitor on and pray for a connection. 3 minutes, 5 minutes, 7 minutes - error. No connection. The meter read "remove sensor and replace with a new one". So, off came the sled with more tears. This was on good because we used the extra stick glue to keep it in place.

OK, so we are thinking now what. Grace never wants to do it again, Dad is so upset to watch his little girl hurt and I am all over the place with my feelings: Why does it have to hurt, why can't it be easier, why did we not do the insertion right the first time, how are we going to continue with the study, why? why? why? why? So, we take a break and think about nighttime snack, reading our princess stories and we chill.

An hour later, I start talking about trying one more time. Another amazing act by my little girl, she lets me go for it. Everything went smooth as far as the connection, but wow there sure was a lot of blood. I don't know if the tranmittor will work. We gave it a try an NO LUCK. Well, I wasn't about to tell Grace this, so we went about our routine and she hopped in the shower. The transmittor fell off while she was in there & I told her to really soak the location of the sensor. I even used extra soapy suds to try to get under the tape. I was just going to leave it on her arm hoping the tape would peel off until our adhesive remover shows up in the mail. Again, moving forward --> Right before bed we checked it out & the bleeding seemed to stop & the shower cleaned the whole area. Why not? Lets reattached the transmittor & see what happens. wait, wait, wait - beep, beep the monitor read "was a new sensor inserted?" YES YES YES. It seems to be working. Then we had to wait an hour for the first calibration to see if we were back in action. Sweet Dreams baby girl. I tell Grace "just so you know I will be doing a couple sugar tests while your sleeping." It seems to help if I let her know ahead of time, she doesn't pull away after the finger prick as much. 9:15 calibration brings flowers to the monitor which means it is reading data. YEAH!!! The 10:15 calibratin works too. Yeah baby! This has to get easier. I know it will be great information in trying to manage Gracies diabetes. So, after this really long winded blog, I am done with my rant.

Until the next insertion:)