Grace has been using the OmniPod pump for three years this April. Three years. Three years ago do you know what I heard - that smaller Pods and a new PDM were on their way. As in, a few months until they cleared the FDA and they would be in our hands.
Grace was even in the clinical trials for children with Type 1, on the new PDM. I held the new Pod in my hands, played with the PDM, was trained on it by a CDE OmniPod representative from Texas who was flown to Philadelphia to help conduct the FDA trials. That was TWO YEARS AGO.
And what pisses me off even more is that the NEW customers to Insulet - the ones who have 'cut the cord' are the first ones to get the new system and Pods. We have been more than loyal, outspoken advocates of Insulet and OmniPod for three years.
You know when I may get the new system for Grace? Good question. Insulet can not tell me. As in, when I call, they have no idea when I will be given the new system. No timeline. No date in the future. Nothing. Hmmmm. I'm not a business person, but something stinks about this.
My good friend Lorraine Sisto, who's son Caleb is also Type 1, and who blogs at This is Caleb, wrote a piece stating her feeling about it all.
Head on over there and read what she has to say.
She's been waiting SIX years for this.
Go ahead, ask her when she is getting her new system for Caleb.
Go ahead, ask.
http://thisiscaleb.com/2013/03/31/six-years-of-waiting-omnipod/
Sunday, March 31, 2013
Thursday, March 28, 2013
Not wanting to
'I don't want to. I just don't WANT TO.'
Those were the words that Grace said to me when I mentioned that it was Pod change time. She was about to 'expire' in a few hours, and I didn't want to do a middle of the night Pod change.
'I understand, you don't want to. But we have to. It's already started. I deactivated the other Pod, so it has to come off and a new one on.'
'I DON'T want to. I just don't want to do it.'
And instead of me stating again why she has to do it, why she must do it, why it isn't negotiable and why it doesn't matter, in the end, that she doesn't want to, but she just has to... I hug her.
I hug her hard and whisper in her ear.
'I hear you honey. I hear you. You don't want to do this anymore.'
And she cries and says 'Yeah.'
I try and say all the right things - I try to understand what it must be like to do this every three days, to wait for the 'shunk' of the cannula into the skin, to have this damn Pod hanging off me every bloody second of every day, to bolus for every thing she eats, for all the finger pricks and the blood and well, all of it.
I can try to understand, but I don't REALLY understand.
But I do understand that it must be hard. I have done some very hard things in my life for a very long time and I do understand the feeling of things being so hard that you don't know how you are gonna get up and do it one more damn day. That I do understand, in spades.
I tell her our mantra, that we don't have to like it, but we just have to do it. And I will be there to hold her hand, help her through it, and move on, so we can do the great things in life.
I tell her that.
And I also tell her that I understand hard.
Those were the words that Grace said to me when I mentioned that it was Pod change time. She was about to 'expire' in a few hours, and I didn't want to do a middle of the night Pod change.
'I understand, you don't want to. But we have to. It's already started. I deactivated the other Pod, so it has to come off and a new one on.'
'I DON'T want to. I just don't want to do it.'
And instead of me stating again why she has to do it, why she must do it, why it isn't negotiable and why it doesn't matter, in the end, that she doesn't want to, but she just has to... I hug her.
I hug her hard and whisper in her ear.
'I hear you honey. I hear you. You don't want to do this anymore.'
And she cries and says 'Yeah.'
I try and say all the right things - I try to understand what it must be like to do this every three days, to wait for the 'shunk' of the cannula into the skin, to have this damn Pod hanging off me every bloody second of every day, to bolus for every thing she eats, for all the finger pricks and the blood and well, all of it.
I can try to understand, but I don't REALLY understand.
But I do understand that it must be hard. I have done some very hard things in my life for a very long time and I do understand the feeling of things being so hard that you don't know how you are gonna get up and do it one more damn day. That I do understand, in spades.
I tell her our mantra, that we don't have to like it, but we just have to do it. And I will be there to hold her hand, help her through it, and move on, so we can do the great things in life.
I tell her that.
And I also tell her that I understand hard.
Wednesday, March 27, 2013
Blue hair, baby!
Grace has wanted blue ends of her hair, well, forever. OK, maybe not forever like we know it, but foreeeeeeeeeever in her 10 year old mind. Which is like 110 years to you and me.
I said yes, and frankly, without a moment's hesitation. It's her hair and frankly, it's only hair. Hair grows. Hair can be cut at any moment. It's a color, that's all.
Last night was the night. She had to go blonde on the tips before she got dyed blue.
And she loved every minute of it.
I present to you, in the spirit of the blue circle, Grace goes blue.
I said yes, and frankly, without a moment's hesitation. It's her hair and frankly, it's only hair. Hair grows. Hair can be cut at any moment. It's a color, that's all.
Last night was the night. She had to go blonde on the tips before she got dyed blue.
And she loved every minute of it.
I present to you, in the spirit of the blue circle, Grace goes blue.
Monday, March 18, 2013
Relying on Dex
Whoa... I have not posted in HOW long? Wowsa. Well, life keeps you busy, is all I will use as an excuse.
Dexom, how we love thee. There have been less sleepless nights thanks to you. Less finger pricking. Less having that low settle in for a good long spell. Less highs that last and last and last, cause we can ward it off with you, Dex.
One thing is, which I really hate to say is, Grace relies on it a little too much I think. Yes, I know it's a pain in the you-know-what to test when Dex is screaming 70 with a down arrow. I am completely aware of the others who may look at someone who is about to prick their finger and draw blood, though I am not the one they are staring at. I fully realize the complications that arise when peer after peer asks you 'What is that?' 'What are you doing?' 'OMG, you are really bleeding!' It sucks.
Seeing Dexcom read an 82 with a slightly southeast arrow, fearing you are heading towards a low, is call for a granola bar, no?! In her mind it is. And it results in a 234 BG merely two hours later. Cause I don't think she really was 82, I think she had just eaten, and Dexom was a little off. I think she was in the low 100s. Then add in an un-dosed-for 17g granola bar, and BAM, you got yourself a 234 BG.
Problem is, this isn't the first time she has done this. It's been about 3 times now in the last few months, the fear that Dex rings in at 80, the worry about a low, the treatment and then, the rebound high. I get it, the worry about the low. I get it, the trust in Dex and not the testing. And still I converse with her about a different way of approaching it. Might you test, honey? What do you think about testing, sweetie?
I absorb my daughter's eye roll as I suggest that she might think about testing next time this situation arises - the Dexcom ringing in with a 'supposed low' but no other earthly reason for a low, and the need to confirm or deny it's existence with a finger prick.
The eye roll says the treatment of the granola bar was just fine Mom. I saw where I was headed and I stopped it. So what I got a 234. I adjusted.
And I have to remember that my gal is learning, she is doing it herself and it's hers, not mine.
And that she did just fine.
Dexom, how we love thee. There have been less sleepless nights thanks to you. Less finger pricking. Less having that low settle in for a good long spell. Less highs that last and last and last, cause we can ward it off with you, Dex.
One thing is, which I really hate to say is, Grace relies on it a little too much I think. Yes, I know it's a pain in the you-know-what to test when Dex is screaming 70 with a down arrow. I am completely aware of the others who may look at someone who is about to prick their finger and draw blood, though I am not the one they are staring at. I fully realize the complications that arise when peer after peer asks you 'What is that?' 'What are you doing?' 'OMG, you are really bleeding!' It sucks.
Seeing Dexcom read an 82 with a slightly southeast arrow, fearing you are heading towards a low, is call for a granola bar, no?! In her mind it is. And it results in a 234 BG merely two hours later. Cause I don't think she really was 82, I think she had just eaten, and Dexom was a little off. I think she was in the low 100s. Then add in an un-dosed-for 17g granola bar, and BAM, you got yourself a 234 BG.
Problem is, this isn't the first time she has done this. It's been about 3 times now in the last few months, the fear that Dex rings in at 80, the worry about a low, the treatment and then, the rebound high. I get it, the worry about the low. I get it, the trust in Dex and not the testing. And still I converse with her about a different way of approaching it. Might you test, honey? What do you think about testing, sweetie?
I absorb my daughter's eye roll as I suggest that she might think about testing next time this situation arises - the Dexcom ringing in with a 'supposed low' but no other earthly reason for a low, and the need to confirm or deny it's existence with a finger prick.
The eye roll says the treatment of the granola bar was just fine Mom. I saw where I was headed and I stopped it. So what I got a 234. I adjusted.
And I have to remember that my gal is learning, she is doing it herself and it's hers, not mine.
And that she did just fine.
Saturday, February 23, 2013
Her pancreas worked!
Just when I think I have the puberty hormones figured out, she has a night and day like this. Hardly needing any insulin, plummeting lows here and there, barely making it out of the 90's.
Oy.
Oy.
Friday, February 15, 2013
Tuesday, February 12, 2013
The picture before it all
Grace needs a school photo of herself in 1st grade, for a 5th grade school yearbook project.
And I know exactly which one it is. I can see it in my mind, her blue school dress, necklace with the flower on it that she chose that morning, and most of all, I remember the obligatory 1st grade missing-teeth grin. Every one of my kids has a 1st grade missing front teeth photo. I remember chuckling when the school photos came back that year.
And just like that, the great memories I have are gone. They leave, replaced by what the 1st grade year brought us, diabetes. It was a mere 2 months after the school photo was taken that we found ourselves in the ER of our local hospital, with a diagnosis of Type 1.
The 1st grade photo brings that with it too.
I scour the 5x7 photo and I hold it close to my face. Should I have noticed something? Are her arms thinner here? Her skin looks tight. Maybe my eyes are creating illusions. Don't her eyes look a little sunken in? My God, maybe her eyes were this sunken all the time and I didn't even know! I wonder what her blood sugar was then, if we were slowly creeping toward the D, or we were already firmly planted in it's soil. I will never know. But I scour the photo for clues I missed, for something to say to me ' THERE, see it!' But I don't. I see her.
I find Grace and I give it to her.
Look how cute you were, sweetie!
Mom, I don't have any front teeth!
I know, doesn't that make it even cuter?
I was 6, Mom. I was in Mrs. M's class that year.
Yeah, I know, honey. That photo was taken just about two months before you were diagnosed with diabetes.
Don't you wish we could go back, Mom?
I smile, but I don't know what to say. Do I wish I could go back? Wishes won't get me anywhere on this ride. I can wish and wish and wish, and we will still be where we are. I don't say any of that to her. I simply nod and smile. I don't know what to say.
It's a cute photo of you honey, it will look great for the 5th grade page in the yearbook this year.
Funny how one picture can say so much - sweetness, cuteness, reality, truth, shock, awe.
And I know exactly which one it is. I can see it in my mind, her blue school dress, necklace with the flower on it that she chose that morning, and most of all, I remember the obligatory 1st grade missing-teeth grin. Every one of my kids has a 1st grade missing front teeth photo. I remember chuckling when the school photos came back that year.
And just like that, the great memories I have are gone. They leave, replaced by what the 1st grade year brought us, diabetes. It was a mere 2 months after the school photo was taken that we found ourselves in the ER of our local hospital, with a diagnosis of Type 1.
The 1st grade photo brings that with it too.
I scour the 5x7 photo and I hold it close to my face. Should I have noticed something? Are her arms thinner here? Her skin looks tight. Maybe my eyes are creating illusions. Don't her eyes look a little sunken in? My God, maybe her eyes were this sunken all the time and I didn't even know! I wonder what her blood sugar was then, if we were slowly creeping toward the D, or we were already firmly planted in it's soil. I will never know. But I scour the photo for clues I missed, for something to say to me ' THERE, see it!' But I don't. I see her.
I find Grace and I give it to her.
Look how cute you were, sweetie!
Mom, I don't have any front teeth!
I know, doesn't that make it even cuter?
I was 6, Mom. I was in Mrs. M's class that year.
Yeah, I know, honey. That photo was taken just about two months before you were diagnosed with diabetes.
Don't you wish we could go back, Mom?
I smile, but I don't know what to say. Do I wish I could go back? Wishes won't get me anywhere on this ride. I can wish and wish and wish, and we will still be where we are. I don't say any of that to her. I simply nod and smile. I don't know what to say.
It's a cute photo of you honey, it will look great for the 5th grade page in the yearbook this year.
Funny how one picture can say so much - sweetness, cuteness, reality, truth, shock, awe.
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