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
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.
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"
BREAK MY HEART :(
- 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.
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"
BREAK MY HEART :(
- 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
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:)
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:)
Friday, August 27, 2010
3 year Diaversary
I do not think I can write much about this right now (other than the fact that I am at work), it is amazing how raw the emotions can still be.
Yes - I did have to step away from my desk before I lost it.
As any D-parent knows, the of diagnosois truely ROCKS your world. As much as diabetes is know second nature in our lives, it seems like yesterday that we heard those awful words: Grace has type 1 diabetes. When caring for a person with diabetes you can have the feeling of complete control one minute and whithin the same hour have no idea where that control went. They are tough emotions when it involves your child!
I have learned so much about diabetes, blood sugar, diet, nutrition, exercise, (etc, etc, etc) and how all of those things come together to affect Grace and her body, both emotionally and physically. But, even with all of the knowledge and practice in the world, a BS number of 295 or 350 pops on to the screen and **BOOM** back to square one. Curse all of the great mysteries of Diabetes.
I will end by saying that Grace - and all of the other T1's I have met - are AMAZING children and individuals. She is strong, confident, brave and will always be my sweet baby girl!
(Props to all the mom's and dad's out there taking care of these woderful kids! It take a D-Mom/Dad to truely understand!)
Yes - I did have to step away from my desk before I lost it.
As any D-parent knows, the of diagnosois truely ROCKS your world. As much as diabetes is know second nature in our lives, it seems like yesterday that we heard those awful words: Grace has type 1 diabetes. When caring for a person with diabetes you can have the feeling of complete control one minute and whithin the same hour have no idea where that control went. They are tough emotions when it involves your child!
I have learned so much about diabetes, blood sugar, diet, nutrition, exercise, (etc, etc, etc) and how all of those things come together to affect Grace and her body, both emotionally and physically. But, even with all of the knowledge and practice in the world, a BS number of 295 or 350 pops on to the screen and **BOOM** back to square one. Curse all of the great mysteries of Diabetes.
I will end by saying that Grace - and all of the other T1's I have met - are AMAZING children and individuals. She is strong, confident, brave and will always be my sweet baby girl!
(Props to all the mom's and dad's out there taking care of these woderful kids! It take a D-Mom/Dad to truely understand!)
Thursday, August 26, 2010
Show me the numbers!
Well, we've moved on to the next step of the CGM study. We finally got the monitor/sensor. There's one catch - it's blinded for two weeks. All that we get to see are the actual BS tests. I can't wait to see the numbers.
I have such mixed emotions about this study and putting Grace through it. I know I've talked about it before, but now that she has this extra "thing" attached to her arm, it reminds me every time I look at her that she has this unfair, unforgiving, awful disease. We try very hard to teach Grace to NEVER be ashamed of having diabetes. Right now she is a confident little girl and does not know the concept of good or bad self-esteem. I want her to hold on to her confidence knowing that so many girls struggle with it as they get older. I am so excited about what we might learn about how her little body works with the CGM, but I don't want her to have any insecurity or embarrassment. I write this because she basically threw her monitor last night. Yes she was "HI", and I hope this CGM helps get rid of all of those highs that make her feel so lousy, but I hate to her so upset about diabetes. I know it's because I hate it too and wish I could take it all away. On the other side, today was a new day. Grace was excited about the new case, belt and was showing her friend M her new meter. I'm so proud of her and really hope that after the two week blind study, we are picked for full study. I really don't want to wait another six months to get the CGM. As crazy as they can make us, I really want to see the numbers.
- Posted using BlogPress from my iPhone
I have such mixed emotions about this study and putting Grace through it. I know I've talked about it before, but now that she has this extra "thing" attached to her arm, it reminds me every time I look at her that she has this unfair, unforgiving, awful disease. We try very hard to teach Grace to NEVER be ashamed of having diabetes. Right now she is a confident little girl and does not know the concept of good or bad self-esteem. I want her to hold on to her confidence knowing that so many girls struggle with it as they get older. I am so excited about what we might learn about how her little body works with the CGM, but I don't want her to have any insecurity or embarrassment. I write this because she basically threw her monitor last night. Yes she was "HI", and I hope this CGM helps get rid of all of those highs that make her feel so lousy, but I hate to her so upset about diabetes. I know it's because I hate it too and wish I could take it all away. On the other side, today was a new day. Grace was excited about the new case, belt and was showing her friend M her new meter. I'm so proud of her and really hope that after the two week blind study, we are picked for full study. I really don't want to wait another six months to get the CGM. As crazy as they can make us, I really want to see the numbers.
- Posted using BlogPress from my iPhone
Wednesday, August 11, 2010
Cobra - Oy Vey :(
A little background - My Husband recently changed jobs. His last day of work was June 30th. Because of the "pre-existing" condition (Grace's diabetes - a whole other blog), we have elected to continue coverage for her until we find the best available option. The best option might not come until September or October with the (unknown) changes coming to healthcare. Again, a whole other blog.
We received all of the paperwork was in July. It stated that we had until September 3rd to decide who will continue what coverage. So, me thinking I was on the ball, filled out all of the paperwork within a week & mailed payment for July & August. I never thought there would be any problem - I still had a month and a half until the deadline. Boy was I wrong. Sometimes nothing is easy. Grace's regular coverage ended on June 26. So when I tried to go fill a prescription at the end of July, it said that she no longer had insurance. WHAT??? I thought the transition was going smoothly & we would not have any problems getting her supplies.
So, long story short, after many phone calls to Medco (prescription plan), UHC (health plan), and Payflex (Cobra plan), I found out that the cost of the prescription coverage went up about $72. This meant that she had coverage in July with no lapse, but because it was Aug. 4th, we still had a small balance due and the enrollment paperwork had not been forwarded to Medco.
Oy Vey. It is now Aug. 19 and it looks like I will be able to fill a precription on Monday or Tuesday. Keep your fingers crossed for me. I HATE getting so low on her supplies. I am thankful that I stocked up before all of this happened. I am down to nothing. I don't know why it makes me so nervous, but it's like the feeling you get when your gas light comes on and you are still 10+ mile away from a gas station.
Next week, I am going to fill everything - pen needles, syringes, insulin (Novo. & Lantus)etc, etc., etc. Then wether I need it our not the day I am able to fill everything again, I am going to do it. Stock up while I can. What a headache this has given me.
We received all of the paperwork was in July. It stated that we had until September 3rd to decide who will continue what coverage. So, me thinking I was on the ball, filled out all of the paperwork within a week & mailed payment for July & August. I never thought there would be any problem - I still had a month and a half until the deadline. Boy was I wrong. Sometimes nothing is easy. Grace's regular coverage ended on June 26. So when I tried to go fill a prescription at the end of July, it said that she no longer had insurance. WHAT??? I thought the transition was going smoothly & we would not have any problems getting her supplies.
So, long story short, after many phone calls to Medco (prescription plan), UHC (health plan), and Payflex (Cobra plan), I found out that the cost of the prescription coverage went up about $72. This meant that she had coverage in July with no lapse, but because it was Aug. 4th, we still had a small balance due and the enrollment paperwork had not been forwarded to Medco.
Oy Vey. It is now Aug. 19 and it looks like I will be able to fill a precription on Monday or Tuesday. Keep your fingers crossed for me. I HATE getting so low on her supplies. I am thankful that I stocked up before all of this happened. I am down to nothing. I don't know why it makes me so nervous, but it's like the feeling you get when your gas light comes on and you are still 10+ mile away from a gas station.
Next week, I am going to fill everything - pen needles, syringes, insulin (Novo. & Lantus)etc, etc., etc. Then wether I need it our not the day I am able to fill everything again, I am going to do it. Stock up while I can. What a headache this has given me.
Saturday, August 7, 2010
Why I cried today . . .
- Grace starts kindergarten in one week.
- Grace has diabetes
- Diabetes sucks
- never dreamt 504 plans, health care action plans and quick reference sheets would be part of getting ready for kindergarten
- I have to trust a whole new bunch of people to care for my baby girl & hope they can take as good care of her as her daycare/preschool has
- The vet thought Chloe (my dog) had cancer (good news here, things are fine, just an infection.
- I packed up my one year olds old winter clothes to give away = both my girls are growing up so fast.
- Oh Yeah - diabetes sucks
I feel better now. I'm ready for a new day. Tomorrow will be a good one!
- Grace has diabetes
- Diabetes sucks
- never dreamt 504 plans, health care action plans and quick reference sheets would be part of getting ready for kindergarten
- I have to trust a whole new bunch of people to care for my baby girl & hope they can take as good care of her as her daycare/preschool has
- The vet thought Chloe (my dog) had cancer (good news here, things are fine, just an infection.
- I packed up my one year olds old winter clothes to give away = both my girls are growing up so fast.
- Oh Yeah - diabetes sucks
I feel better now. I'm ready for a new day. Tomorrow will be a good one!
Thursday, July 29, 2010
CGM
I could really use the CGM now/ tonight. Gracie was 260 at dinner. We are still giving her shots after eating (I know - something we need to work on), so she got her insulin around 7:00. When we got home & ready for bed her sugar was 160 (around 7:45). What? That seems way to fast to get into range.
Is she dropping?
Should we do an extra snack?
Nah, we just decided to do the normal 12 carb snack. We'll re-check in a bit?
OK - 9:05 - BS = 144
You would think I would love to see this number and I really do, but it still makes me nervous.
I think I'll test one more time in a couple hours.
Sweet dreams baby girl!
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Is she dropping?
Should we do an extra snack?
Nah, we just decided to do the normal 12 carb snack. We'll re-check in a bit?
OK - 9:05 - BS = 144
You would think I would love to see this number and I really do, but it still makes me nervous.
I think I'll test one more time in a couple hours.
Sweet dreams baby girl!
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Taking control & letting go
This morning after our normal routine of finding the perfect outfit for today - I kid you not, she's worse than a teenager - Grace twirled and posed so that I could see just hope cute she looked today. We headed down stairs for a sugar test and rather than grabbing the poker, she grabbed the tester and said can you do that part, I want to try it. So I said of coarse and did her finger prick. I've always had to help with the other actual testing part, but with the Freestyle that we are using (from the CGM trial), she scooped it right up and got a reading. The high number didn't even matter because WOW, my big girl is becoming a big girl.
While all I want to do is take care of her, it is so amazing to watch her grow and become more independant. A lot of times I know she's ready for things before she believes in it, but sometimes she does something to remind me to let go of some of the control - she'll be OK and make me proud.
Oh yeah, I almost forgot, she did it last night too. I know there is no excuse, but to my defense I have a terrible cold and all I want to do is rest. We went upstairs to get ready for bed. We got all tucked in and started to read our book. She looked at me startled and said "Mommy, my shot." Yep, she remember her lantus. I completely forgot about it. We went in the kitchen to do her shot, get a snack and do the bedtime sugar test. She was low, so the "normal" routine was thrown off. We treated the low, got a snack, retested and headed upstairs. NO Lantus. Well, good thing Grace knows what's going on. She's definitely something special.
While all I want to do is take care of her, it is so amazing to watch her grow and become more independant. A lot of times I know she's ready for things before she believes in it, but sometimes she does something to remind me to let go of some of the control - she'll be OK and make me proud.
Oh yeah, I almost forgot, she did it last night too. I know there is no excuse, but to my defense I have a terrible cold and all I want to do is rest. We went upstairs to get ready for bed. We got all tucked in and started to read our book. She looked at me startled and said "Mommy, my shot." Yep, she remember her lantus. I completely forgot about it. We went in the kitchen to do her shot, get a snack and do the bedtime sugar test. She was low, so the "normal" routine was thrown off. We treated the low, got a snack, retested and headed upstairs. NO Lantus. Well, good thing Grace knows what's going on. She's definitely something special.
Wednesday, July 21, 2010
The count down has started - 3 1/2 weeks
Well, Grace's last day of daycare/preschool is August 11th. That evening is Kindergarten orientation, then the final meeting with the nurse on the 12th. I am so excited for her and the new adventures that she is going to experience, but handing her diabetes care off to new strangers is killing me. I still need to finish up her 504 Plan, start & finish her Healthcare Plan & put together a quick reference sheet for all teachers, nurses, after school care personell & anyone that will be in charge of of Grace at anytime. (Breath)
I am trying to stay calm, but I have a list a mile long of things I want/need to take care of before she starts school. Nothing is new, but I really want it all to go smoothly for her. She has enough to worry about with a new school, new friends (she only knows one person going to her new school), a new schedule, new people giving her shots, etc, etc, etc.
So, I started this post 2 days ago. I have now calmed down:
I just received my 2010 Calorie King for the nurse - CHECK
Tomorrow, Grace and I are going school shopping. We'll be able to check off quite a few "to Do's" and have a great time!!! She gets to pick out a new backpack, new lunchbox, and if we see something that works, a new diabetes bag. I love this stuff. She al so gets to pick out an outfit and get her first pedicure. I know, she is only 5, but she asked for it & has earned it through good behavior at bed time. She has done really well! We've had some nighttime issues and lots of fits, but nothing for 10 full days now.
To top things off, we get to share a strawberry banana smoothie. She loves them! It took some digging, but McDonald's finally posted the nutritional info. and the first go around worked as far as dosing. It should be a good day!
I am trying to stay calm, but I have a list a mile long of things I want/need to take care of before she starts school. Nothing is new, but I really want it all to go smoothly for her. She has enough to worry about with a new school, new friends (she only knows one person going to her new school), a new schedule, new people giving her shots, etc, etc, etc.
So, I started this post 2 days ago. I have now calmed down:
I just received my 2010 Calorie King for the nurse - CHECK
Tomorrow, Grace and I are going school shopping. We'll be able to check off quite a few "to Do's" and have a great time!!! She gets to pick out a new backpack, new lunchbox, and if we see something that works, a new diabetes bag. I love this stuff. She al so gets to pick out an outfit and get her first pedicure. I know, she is only 5, but she asked for it & has earned it through good behavior at bed time. She has done really well! We've had some nighttime issues and lots of fits, but nothing for 10 full days now.
To top things off, we get to share a strawberry banana smoothie. She loves them! It took some digging, but McDonald's finally posted the nutritional info. and the first go around worked as far as dosing. It should be a good day!
Wednesday, July 14, 2010
Hey good lookin'
I know that I am suppose to emphasize that there are no bad numbers. That we learn from the numbers and make adjustments because of the numbers, but I have to admit, as a parent, today was fantastic (and much needed after the week we've had). In the past five days Grace's BS has ranged from 40 to 450. Her poor little body and big emotions have been tested.
We've been working with her nurse to try to get things dialed in and a little more balanced. So when she woke up at 305, I thought "here we go again."
I was waiting for the call from daycare all day. Nothing . . .
This is what I read when I got her daily log sheet:
9:00 - 179
11:00 - 122
12:00 - 134
3:30 -
6:00 - 154
8:00 - 89
What? Really? Where did this day come from? I don't think in the 3 years since she was diagnosed she's had all these good lookin' numbers in one day. Sweet dreams baby girl - sleep calmly!
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We've been working with her nurse to try to get things dialed in and a little more balanced. So when she woke up at 305, I thought "here we go again."
I was waiting for the call from daycare all day. Nothing . . .
This is what I read when I got her daily log sheet:
9:00 - 179
11:00 - 122
12:00 - 134
3:30 -
6:00 - 154
8:00 - 89
What? Really? Where did this day come from? I don't think in the 3 years since she was diagnosed she's had all these good lookin' numbers in one day. Sweet dreams baby girl - sleep calmly!
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Friday, July 9, 2010
CGM trial
Well, I signed Grace up for a trial at Childrens through Wash. U. I am very excited about it, but I also have mixed feelings about it.
What I hope to gain from it:
A clearer vision of how Grace's BS is affected by eating and play/exercise.
What happens at night!?!?!?
Less fear of lows and More confidence while bringing her numbers to a lower range (I feel so safe between 150 and 200 - I need to to get over this and bring it down to 100)
See how Grace reacts to having it - will she want a pump?
What I want to avoid:
I know it's nieve, but I don't want Grace to suffer any negative consequences - mental or physical. With T1, it is ALWAYS in your mind. I don't want her to feel a constant reminder. I also do not want her to begin to feel self conscious . I want her to hold on to her confidence (where diabetes is concerned) as long as possible. NEVER feel ashamed.
Now - since we've made the decision to move forward, I just hope we are in the main study rather than the home study. 6 months is to long to wait for the monitor. I'm really to impatient for that
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What I hope to gain from it:
A clearer vision of how Grace's BS is affected by eating and play/exercise.
What happens at night!?!?!?
Less fear of lows and More confidence while bringing her numbers to a lower range (I feel so safe between 150 and 200 - I need to to get over this and bring it down to 100)
See how Grace reacts to having it - will she want a pump?
What I want to avoid:
I know it's nieve, but I don't want Grace to suffer any negative consequences - mental or physical. With T1, it is ALWAYS in your mind. I don't want her to feel a constant reminder. I also do not want her to begin to feel self conscious . I want her to hold on to her confidence (where diabetes is concerned) as long as possible. NEVER feel ashamed.
Now - since we've made the decision to move forward, I just hope we are in the main study rather than the home study. 6 months is to long to wait for the monitor. I'm really to impatient for that
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Wednesday, June 23, 2010
Definition of Grace
Today my readings took me to three new blogs, all of which had one thing in common - Grace. These three blogs were from parents of children with Type 1 diabetes. All of the children were daughters named Grace. Of course, because I have a Grace with Type 1, I found this very strange, interesting, coincidental? Who knows, but it got me thinking about "Grace" and it's meaning. I pulled some definitions from the Merriam-Webster online dictionary. This is what I found:
Grace:
1 a : unmerited divine assistance given humans for their regeneration or sanctification
b : a virtue coming from God
c : a state of sanctification enjoyed through divine grace
Regeneration: renewal or restoration of a body, bodily part, or biological system (as a forest) after injury or as a normal process
Virtue:
3 : a beneficial quality or power of a thing
4 : manly strength or courage : valor
5 : a commendable quality or trait : merit
6 : a capacity to act
This is not the first time I've pulled the meaning of Gracies name, but after reading about three other extrodinary Grace's today, it just touched me a little more today. It added to my existing belief that there is definitely something special about these T1 kids!
Grace:
1 a : unmerited divine assistance given humans for their regeneration or sanctification
b : a virtue coming from God
c : a state of sanctification enjoyed through divine grace
Regeneration: renewal or restoration of a body, bodily part, or biological system (as a forest) after injury or as a normal process
Virtue:
3 : a beneficial quality or power of a thing
4 : manly strength or courage : valor
5 : a commendable quality or trait : merit
6 : a capacity to act
This is not the first time I've pulled the meaning of Gracies name, but after reading about three other extrodinary Grace's today, it just touched me a little more today. It added to my existing belief that there is definitely something special about these T1 kids!
Saturday, June 19, 2010
Blog/journal, public/private
I am not sure how I feel about blogging. I am a very private person and sometimes have trouble being honest, even with myself, about how I am feeling. I am excellant about putting up a strong front. With blogging, I hope to be able to let down my gaurd and really share. I annonumously follow several blogs, all of which focus on parenting or living with T1 diabetes. It helps me work through my own challenges and and enjoy our triumphs. I am a mommy to a type 1 diabetic. She is 5 years old (going on 15) and was diagnosed with diabetes at 2 1/2. For now I will just say that I wish it were me, not my sweet baby girl, that had to deal with a life full of dibetes.