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.
Wednesday, September 29, 2010
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!