Nice segment with Denise Fuastman on Science Friday 8/29/08. It is available at the iTtunes Store as a free podcast. I am officially old because I have no clue how to link the iTunes Store podcast.
http://www.sciencefriday.com/program/archives/200808291
August 30, 2008
I am Voting for Thomas P. Murt
He is our local representative in Harrisburg.
I wrote him about HB 2002 Short Title: An Act amending the act of March 10, 1949 (P.L.30, No.14), known as the Public School Code of 1949, further providing for school health services. (I would hate to see a long title ya know what I mean?)
This is the PA Safe at School bill for students with diabetes I wrote about a few days ago. He called our house when I was at work yesterday and spoke with one of the older kids. He said he would add his sponsorship. I got this card in the mail from him today.
Wow that was fast. I even see he is now listed on line as a a co-sponsor of the bill!
Democracy in Action! Wohoo!
So my friends I suggest you join me in voting for the honorable Mr. Murt if you are in our district and if you are not, write your honorable dude or dudette.
I wrote him about HB 2002 Short Title: An Act amending the act of March 10, 1949 (P.L.30, No.14), known as the Public School Code of 1949, further providing for school health services. (I would hate to see a long title ya know what I mean?)
This is the PA Safe at School bill for students with diabetes I wrote about a few days ago. He called our house when I was at work yesterday and spoke with one of the older kids. He said he would add his sponsorship. I got this card in the mail from him today.
Wow that was fast. I even see he is now listed on line as a a co-sponsor of the bill!
Democracy in Action! Wohoo!
So my friends I suggest you join me in voting for the honorable Mr. Murt if you are in our district and if you are not, write your honorable dude or dudette.
August 29, 2008
What is Your Goal?
There it is a bullseye at the center of a Type 1 parent’s universe. It is the blood glucose “target.” What yours 95, 110, 100?
Funny thing about Type 1 is how it makes life so quantifiable. Poke your kid with a shard of steel squeeze out some blood and in five seconds you get feedback on your parenting skills. Hit the goal and you are doing great. Oh, that parenting would be so easy - it's not.
And the goal isn’t a number.
Everyone who has listened to Cosby knows that as parents our goal is to get the kids out of the house. Yeah, it is a joke, but it is funny because it is true. The target is their own apartment supported by their own income. It’s not that we don’t love’m to the contrary we love them so much that we want what is best for them. Coincidentally what is best for them (to move out of our house) is good for us too.
It's just that nobody told Type 1 the plan. It will try to confuse you into not focusing on the goal. It wants you to see numbers and find reasons not to trust. Type 1 wants us to be clingy and over protective to withhold responsibility. It tells us this is for the kids own good, until they grow up.
Life doen't to happen instantaneously. Not that that wouldn’t be nice; all, sweet little kid then BAMB! Hit'm with some Emril essence and instant adult. No issues in between. But they have to grow into being an adult. We need them to grow into it so we know they can handle the responsibility. What the heck parents need kids to grow into their adult lives so we know WE can handle giving up the responsibility.
For our kids to step into their lives we need to step back.
Sadly part of our type 1 kids' adult lives will be diabetes management. Yeah a cure would be cool but my bet is our kids will grow up and move out before there is a cure. So we need to help them get ready and our part of that is growing into the idea of letting go. Giving responsibility and trust is as important for us as it is for them. We have to get past our 'need' to look over their shoulder and read the meter - literally then figuratively. They will never get out if we don't let go.
We all made type 1 mistakes. Making them was a big step in our growth as type 1 parents. Remember that first missed shot? It was a good thing. Didn't feel like it at the time but it was. It meant we were getting past the shock of diagnosis and getting back to some part of life. A little. We kicked ourselves for it too. We saw progress as failure. Don't do the same thing with letting go, don't make the mistake of seeing progress as failure.
Our teens need the same process of growing we did. We need to see their taking responsibility and forgetting as progress not failure. To do that we need to see far more successes than slip ups. We may need to create success situations as well as not yell at slip ups.
Create success situations like, "I want you to take care of you diabetes this evening when we are out, this weekend, this week, this month, until your next check up. How about you take these prescriptions to the pharmacy, call in you set order, down load your meter, set your basals and take out the trash." Hey when they are living by themselves the trash will still need to be taken out.
It is about life. It isn't easy. It takes a lot longer than a blood check. It is not about a number. Unless that number is their apartment unit.
Funny thing about Type 1 is how it makes life so quantifiable. Poke your kid with a shard of steel squeeze out some blood and in five seconds you get feedback on your parenting skills. Hit the goal and you are doing great. Oh, that parenting would be so easy - it's not.
And the goal isn’t a number.
Everyone who has listened to Cosby knows that as parents our goal is to get the kids out of the house. Yeah, it is a joke, but it is funny because it is true. The target is their own apartment supported by their own income. It’s not that we don’t love’m to the contrary we love them so much that we want what is best for them. Coincidentally what is best for them (to move out of our house) is good for us too.
It's just that nobody told Type 1 the plan. It will try to confuse you into not focusing on the goal. It wants you to see numbers and find reasons not to trust. Type 1 wants us to be clingy and over protective to withhold responsibility. It tells us this is for the kids own good, until they grow up.
Life doen't to happen instantaneously. Not that that wouldn’t be nice; all, sweet little kid then BAMB! Hit'm with some Emril essence and instant adult. No issues in between. But they have to grow into being an adult. We need them to grow into it so we know they can handle the responsibility. What the heck parents need kids to grow into their adult lives so we know WE can handle giving up the responsibility.
For our kids to step into their lives we need to step back.
Sadly part of our type 1 kids' adult lives will be diabetes management. Yeah a cure would be cool but my bet is our kids will grow up and move out before there is a cure. So we need to help them get ready and our part of that is growing into the idea of letting go. Giving responsibility and trust is as important for us as it is for them. We have to get past our 'need' to look over their shoulder and read the meter - literally then figuratively. They will never get out if we don't let go.
We all made type 1 mistakes. Making them was a big step in our growth as type 1 parents. Remember that first missed shot? It was a good thing. Didn't feel like it at the time but it was. It meant we were getting past the shock of diagnosis and getting back to some part of life. A little. We kicked ourselves for it too. We saw progress as failure. Don't do the same thing with letting go, don't make the mistake of seeing progress as failure.
Our teens need the same process of growing we did. We need to see their taking responsibility and forgetting as progress not failure. To do that we need to see far more successes than slip ups. We may need to create success situations as well as not yell at slip ups.
Create success situations like, "I want you to take care of you diabetes this evening when we are out, this weekend, this week, this month, until your next check up. How about you take these prescriptions to the pharmacy, call in you set order, down load your meter, set your basals and take out the trash." Hey when they are living by themselves the trash will still need to be taken out.
It is about life. It isn't easy. It takes a lot longer than a blood check. It is not about a number. Unless that number is their apartment unit.
August 27, 2008
Son of the Sidekick
Sounds like a summer super hero movie spin off. 
It looks like a spin off too. Home Diagnostics has a new meter on the market, the "True2Go."
It's small. "Small enough to screw onto the top of a test strip bottle."
Wait a second. This looks like my favorite theme park meter the Side Kick redone.
The problem with the Sidekick was it died after about 50 tests. It was programmed to stop working when it did as many tests as the number of strips it was sold with. You could not get it to work if you bought new strips for it (I tried.) These were great in the kid's pocket meters. Great is a word that here means small and easy to carry.
The insurance company in its infinite wisdom wouldn't buy them for us because the Sidekick was an over the counter product. Never mind that the strip for strip a Sidekick was cheaper than the strips they did pay for. To hold the line on costs they bought the more expensive stuff. You have to work at an insurance company for that to make any sense.
So maybe Home Diagnostics figured out that they could sell strips a.k.a. cash cows if the made son of Sidekick. I'll have to get my hands... err.. the kids fingers... on one.
August 26, 2008
From The News Wire: Faustman on TNF
What the heck is TNF? Tumor Necrosis Factor
Oh and you can listen too. There is an audio clip.
More here:
http://www.boston.com/news/nation/washington/articles/2008/08/26/diabetes_therapies_take_new_approach/
Oh and More Mice are getting cured:
http://www.sciencedaily.com/releases/2008/08/080825175043.htm
Read all about it here: Selective Killing of Autoimmune Cells Suggests Therapy for Type 1 DiabetesBOSTON, Aug. 25 -- Laboratory studies of type 1 diabetes and other autoimmune
diseases show that boosting levels of tumor necrosis factor (TNF) or its
receptor activity selectively destroys autoreactive T cells, suggesting a
possible cure for the diseases, investigators here reported.
Oh and you can listen too. There is an audio clip.
More here:
http://www.boston.com/news/nation/washington/articles/2008/08/26/diabetes_therapies_take_new_approach/
Oh and More Mice are getting cured:
http://www.sciencedaily.com/releases/2008/08/080825175043.htm
August 25, 2008
Tip's Tip
Last night the Olympics ended.
Tonight the Democrat’s National Convention starts.
I am going out on a limb and guessing the Olympic Games will prove more entertaining than the Political Games.
Once again health care is a ‘Big Issue.’ The national parties are going to fight about stuff that they are more interested in as fighting points than practical day to day living with a chronic condition matters.
Can you tell that I don’t have big expectations that much will change? Tip O’Neill once said, “All Politics is Local.” Old Tip knew his stuff. Take his advice.
Maybe the most local issues are schools. You don’t have to look too hard to find parental angst on the issue of type 1 care and school. In fact I dare say this is a more emotional issue with type 1 families than the mess that we lovingly call health care / insurance.
All the boogie men of type 1 come into play with a bad school and type 1 family relationship; the food police, testing, activity, power, ignorance, responsibility and all the rest.
There is a T1 community but for the most part it is a virtual community that exists with on line connections. Politically we are not locals so in a lot of ways we don’t exist as a block with political clout.
So while you are skipping the coverage of both parties national convention, drop a note to your state representatives about the need for safe diabetes care in school. If anyone knows a list by state of pending legislation, I would live a link. ADA has this list of states with laws and this about states that don’t but neither is quite a list of states with legislation pending to call and write our legislatures about. (Pa folks here is the info for us.)
Do your civic duty. Watch the national conventions if you must but during breaks write you state reps and help bring some rational order the school rules for type 1.
Tonight the Democrat’s National Convention starts.
I am going out on a limb and guessing the Olympic Games will prove more entertaining than the Political Games.
Once again health care is a ‘Big Issue.’ The national parties are going to fight about stuff that they are more interested in as fighting points than practical day to day living with a chronic condition matters.
Can you tell that I don’t have big expectations that much will change? Tip O’Neill once said, “All Politics is Local.” Old Tip knew his stuff. Take his advice.
Maybe the most local issues are schools. You don’t have to look too hard to find parental angst on the issue of type 1 care and school. In fact I dare say this is a more emotional issue with type 1 families than the mess that we lovingly call health care / insurance.
All the boogie men of type 1 come into play with a bad school and type 1 family relationship; the food police, testing, activity, power, ignorance, responsibility and all the rest.
There is a T1 community but for the most part it is a virtual community that exists with on line connections. Politically we are not locals so in a lot of ways we don’t exist as a block with political clout.
So while you are skipping the coverage of both parties national convention, drop a note to your state representatives about the need for safe diabetes care in school. If anyone knows a list by state of pending legislation, I would live a link. ADA has this list of states with laws and this about states that don’t but neither is quite a list of states with legislation pending to call and write our legislatures about. (Pa folks here is the info for us.)
Do your civic duty. Watch the national conventions if you must but during breaks write you state reps and help bring some rational order the school rules for type 1.
August 22, 2008
What A Croc
OK. Type 1 sucks. That doesn't mean you can't have fun with it.My pals at Cosmo were having a good time getting trial pumps on us at Friends for Life. These ladies were right up front with the fact that they didn't love their belt clips. Their solution?
A Croc cell phone case.
A Croc cell phone case.
You know what else is a croc? Thinking serious an solemn are the same thing.
Thanks Cosmo Ladies.
August 21, 2008
Not All Families Get Along
I am enjoying all the Olympic broadcasts. I am not going out and ordering a half dozen new cars but I may feel better about a 12 pack of diet coke and all the stuff we buy from the J&J family of companies.
We steer a ton of business the J&J family’s way. For example test strips.
It seems that they, like a lot of families, have some less functional members. By this I mean the One Touch branch of the family. Don’t get me wrong I still feel good about being a customer of someone who is bringing all the swimming races into our living room and a bunch of good people to FFL but maybe they could take a lesson from the events they beam into said living room.
Timing is everything - see Michael Phelps’s touch out in the fly. One one hundredth of a second did the deal. I think we can all be impressed with the time keeping ability needed to correctly identify the winner.
Time matters. Unless you are one touch.
One touch isn’t exactly in the same class as the Olympic Games when it comes to timing. Our meters seem to stray off time about as fast the US Swimmer set worlds records. In other words - all the time. I have flat out given up trying to keep them in line and on time.
Time isn’t the only place this member of the clan seems to be off on its own. The $200 Ping meter is another case in point. (Any bets on if a $200 meter keeps time better than a free one? No. Wonder why not.) Animas went out of their way to make the 2020 bright readable color. One touch made the Ping meter dull unreadable monochrome.
There were clear undercurrents of Us vs Them when we asked about this at the combined One Touch / Ping booth at Friends for Life. As in go ask ‘THEM’ head jerking toward the One Touch side of the display booth why the meter has that screen. Clearly the issue had come up and the Animas and One Touch branches of the family had different views on viewable screens.
One Touch also demonstrated it is a bit of out of touch when it came to Mini’s too. For one thing they are not really particularly small. Hey One Touch - how about a meter in a strip can cap like a SideKick? That would rock.
We have two kids with Type 1. Telling the meters apart comes in handy for tracking who numbers are what. Even if you can’t trust the clock in the meter for when tests were done, knowing which meter is who’s helps. Color is a handy little feature in this regard. Yes Minis come in colors. (Grown up meters like Ultras Smarts and Pings only come in boring grown up gray because being a grown up apparently means being boring.)
Colored cases would be cool too. At FFL One Touch made it clear they have them. Yeah! Well they didn’t exactly have them at FFL. One Touch said they drop shipped the cases to selected Endo offices. They suggested we could call our Endo and see if they were one of the lucky offices that got them.
Ok I’ll get on that, after the Olympics.
We steer a ton of business the J&J family’s way. For example test strips.It seems that they, like a lot of families, have some less functional members. By this I mean the One Touch branch of the family. Don’t get me wrong I still feel good about being a customer of someone who is bringing all the swimming races into our living room and a bunch of good people to FFL but maybe they could take a lesson from the events they beam into said living room.
Timing is everything - see Michael Phelps’s touch out in the fly. One one hundredth of a second did the deal. I think we can all be impressed with the time keeping ability needed to correctly identify the winner.
Time matters. Unless you are one touch.
One touch isn’t exactly in the same class as the Olympic Games when it comes to timing. Our meters seem to stray off time about as fast the US Swimmer set worlds records. In other words - all the time. I have flat out given up trying to keep them in line and on time.
Time isn’t the only place this member of the clan seems to be off on its own. The $200 Ping meter is another case in point. (Any bets on if a $200 meter keeps time better than a free one? No. Wonder why not.) Animas went out of their way to make the 2020 bright readable color. One touch made the Ping meter dull unreadable monochrome.
There were clear undercurrents of Us vs Them when we asked about this at the combined One Touch / Ping booth at Friends for Life. As in go ask ‘THEM’ head jerking toward the One Touch side of the display booth why the meter has that screen. Clearly the issue had come up and the Animas and One Touch branches of the family had different views on viewable screens.
One Touch also demonstrated it is a bit of out of touch when it came to Mini’s too. For one thing they are not really particularly small. Hey One Touch - how about a meter in a strip can cap like a SideKick? That would rock.
We have two kids with Type 1. Telling the meters apart comes in handy for tracking who numbers are what. Even if you can’t trust the clock in the meter for when tests were done, knowing which meter is who’s helps. Color is a handy little feature in this regard. Yes Minis come in colors. (Grown up meters like Ultras Smarts and Pings only come in boring grown up gray because being a grown up apparently means being boring.)
Colored cases would be cool too. At FFL One Touch made it clear they have them. Yeah! Well they didn’t exactly have them at FFL. One Touch said they drop shipped the cases to selected Endo offices. They suggested we could call our Endo and see if they were one of the lucky offices that got them.
Ok I’ll get on that, after the Olympics.
August 19, 2008
Cheating
I wore a bunch of pumps at FFL. I had a Cosmo on the longest. I was very impressed with the menu structure and design that went into the user interface. But I am not here to talk about technology.
I’m here to confess.
My name is Bennet and I am a cheater.
I snuck food and didn’t bolus when I was on the pump.
Well more like I just flat out forgot - about half the time.
Maybe more.
It is so easy to get frustrated when the kids don’t bolus. The online forums are full of parental angst when kids don’t. We are SURE we would bolus every time if it was us.
I got news for ya: The only thing easier than being frustrated when your kid doesn’t bolus, is forgetting to bolus.
I dare anyone to put on a saline pump, put yourself in a moderately intellectually stimulating environment and see if you remember to bolus all the time. Oh and have your favorite snacks around and out when you wear it.
I flat out sucked at remembering. I would be walking out of a session all fired up about the topic talking with someone, grab a snack and keep talking. OK, ok, everyone who knows me, knows I keep talking all the time anyway, but there is a point here and that is... I forget...
... Doh! I’m wearing a pump.
What's more, if you’re not used to wearing a set everyday they’re not all that comfortable. It isn’t that they hurt. It is that they are just there, bugging you any chance they get.
The things are bastards that way.
The cord tries to pull the pump into the bowl every time you use the toilet. It thinks that is funny. I am telling you right now, you too can do in-stall gymnastics like a prepubescent Chinese kid looking for gold, when you know a 6 grand pump is heading for commode. If it isn’t diving for the bowl the pump is forever getting tangled up with the cell phone on your belt.
In short the pump made me well aware it was there, I just forgot to bolus.
Eating is as often a reflex more than a conscious act. There is food, it is comfort, you eat, you pay attention to what your mind is on and you forget the pump despite its gold metal efforts to remind you.
If you are like every other parent you and your fellow parents have designed our collective kids’ lives to keep them intellectually stimulated. We build building for that very reason. We call them school and pay taxes every month to support them. We want our kids to do well at this school thing. I mean we not only want straight ‘A’ but the class presidency, editor of the school news paper, lead in the play and league MVP would be nice too.
Kids have stuff on their minds. We go to great lengths to insure it.
All that and they bolus way better than the 50% I did. More like 80% or 90%, maybe even 99% of the time.
I have a new found respect for that.
(That and I’m considering entering the 2012 Olympics in the pump/stall gymnastics event, unless I have to wear a tight leotard, that is just unthinkable.)
I’ll tell you what is breaking the rules. Stigmatizing the very real and human slip of having a life and forgetting a bolus by using terms like sneaking, lying and cheating. Yes, it is easy to get frustrated but it is cheating to let that frustration morph into to humiliating and guilt tripping our kids. It is not about numbers it is about living with diabetes, long term, independent living.
It was no accident that the same coach at Friends for Life who said there needs to be consequences for behavior was also the same guy who said he never met a kid who was the problem. His experience is that it is always the parents who have the behavior problem.
It is not about numbers it is about how we lead.
What would you respond better to, being put down as a no good lying cheating skunk (sound like fighting words in an old western don’t it?) for the 20, 10 or 1% of the time you make a mistake or praised for the 80, 90 or 99% of the time you get it right? So how are kids any different? If you are not providing positive feedback 80, 90 or 99% of the time then being overbearing 20, 10 or 1% is cheating.
My name is Bennet. I am a diabetes cheater.
Knowing that is the key to not being one again.
I’m here to confess.
My name is Bennet and I am a cheater.
I snuck food and didn’t bolus when I was on the pump.
Well more like I just flat out forgot - about half the time.
Maybe more.
It is so easy to get frustrated when the kids don’t bolus. The online forums are full of parental angst when kids don’t. We are SURE we would bolus every time if it was us.
I got news for ya: The only thing easier than being frustrated when your kid doesn’t bolus, is forgetting to bolus.
I dare anyone to put on a saline pump, put yourself in a moderately intellectually stimulating environment and see if you remember to bolus all the time. Oh and have your favorite snacks around and out when you wear it.
I flat out sucked at remembering. I would be walking out of a session all fired up about the topic talking with someone, grab a snack and keep talking. OK, ok, everyone who knows me, knows I keep talking all the time anyway, but there is a point here and that is... I forget...
... Doh! I’m wearing a pump.
What's more, if you’re not used to wearing a set everyday they’re not all that comfortable. It isn’t that they hurt. It is that they are just there, bugging you any chance they get.
The things are bastards that way.
The cord tries to pull the pump into the bowl every time you use the toilet. It thinks that is funny. I am telling you right now, you too can do in-stall gymnastics like a prepubescent Chinese kid looking for gold, when you know a 6 grand pump is heading for commode. If it isn’t diving for the bowl the pump is forever getting tangled up with the cell phone on your belt.
In short the pump made me well aware it was there, I just forgot to bolus.
Eating is as often a reflex more than a conscious act. There is food, it is comfort, you eat, you pay attention to what your mind is on and you forget the pump despite its gold metal efforts to remind you.
If you are like every other parent you and your fellow parents have designed our collective kids’ lives to keep them intellectually stimulated. We build building for that very reason. We call them school and pay taxes every month to support them. We want our kids to do well at this school thing. I mean we not only want straight ‘A’ but the class presidency, editor of the school news paper, lead in the play and league MVP would be nice too.
Kids have stuff on their minds. We go to great lengths to insure it.
- They are used to wearing sets.
- They know how to use a toilet and not do the stall Olympics.
- They can wear a pump and a cell phone without entangling the phone in the pump line to the point of an occlusion alarm going off and text without looking at the buttons. (The starting degree of difficulty value there is HUGE!)
All that and they bolus way better than the 50% I did. More like 80% or 90%, maybe even 99% of the time.
I have a new found respect for that.
(That and I’m considering entering the 2012 Olympics in the pump/stall gymnastics event, unless I have to wear a tight leotard, that is just unthinkable.)
I’ll tell you what is breaking the rules. Stigmatizing the very real and human slip of having a life and forgetting a bolus by using terms like sneaking, lying and cheating. Yes, it is easy to get frustrated but it is cheating to let that frustration morph into to humiliating and guilt tripping our kids. It is not about numbers it is about living with diabetes, long term, independent living.
It was no accident that the same coach at Friends for Life who said there needs to be consequences for behavior was also the same guy who said he never met a kid who was the problem. His experience is that it is always the parents who have the behavior problem.
It is not about numbers it is about how we lead.
What would you respond better to, being put down as a no good lying cheating skunk (sound like fighting words in an old western don’t it?) for the 20, 10 or 1% of the time you make a mistake or praised for the 80, 90 or 99% of the time you get it right? So how are kids any different? If you are not providing positive feedback 80, 90 or 99% of the time then being overbearing 20, 10 or 1% is cheating.
My name is Bennet. I am a diabetes cheater.
Knowing that is the key to not being one again.
Not the Mama
Delaney went to Diabetes Camp. It was about 36 hours after we got home from Friends for Life. In between she had the swim league champs where she swam up age groups, and the team picnic. Busy kid.
Camp requires a form be filled out with her the basal rates. So the night, after the picnic, I wrote them all down. I did the best I could but some of her's are odd, starting on the half hour at times, they didn’t fit the camp's form cleanly. Her basal are all over the place a mixture resulting from trial and error. A product of evolution, they worked.
She was due for some serious adjustments. Her A1C, at her check up, hours before leaving for FFL was on the higher than we would like side. But We didn’t want to mess too much with basal rates at the convention and subsequent week of walking around Disney. At Disney she was running on the low side probably as a result of all the walking and the hotter than the surface of the sun paths we were walking on.
Anyway checking in to camp, they didn’t want to look at the form. They started reading off basals from the pump. OK, why the form but ok.
Until they flat out got it wrong. So wrong it just jumped out - 6:00 am to midnight x. Wait my brain said, (OK me and 'brain' may be mutually exclusive, M&M size clump of nerve endings may be better.) But even the M&M size clump of nerve endings knew there are all those strange afternoon gyrations and the ramp up for the growth hormones that hit right after she goes to sleep. There was a lot of error in the trial and error that got to these numbers and I did a lot of it, error making that is. You have seen my spelling. You gotta know I make a lot of errors.
So I said, "No, that's wrong. Her basals don’t go flat from 6:00 am to midnight and why do you have us fill in this form if your just going to blow it off?"
Well they said they assume that the form is wrong - filled out a few weeks ago - so they don’t use it.
OK so why send it out then? And you are still not reading her pump right.
Oh well they know they were reading it wrong but they “were waiting for the mother” to come bask to ask her about the pump.
That went over really well.
Well maybe not.
So when we picked her up a week later the Endo fellow had a few fine points for me.
The form was wrong.
Did the doctor set up these basals, because a doctor should?
They are very complex.
She is running high and the basals need changing.
Delaney doesn’t know how to adjust her basals and she should.
And her I:C ratio needed a tweak.
Thanks. Love Ya / Mean It.
The form - nice of you to actually look at it. What was off what I wrote or what you wrote? No answer. Speaks for itself.
No the doctor never looks at her basals, occasionally the nurse talks them over with us but I can't recall once in three years when the Endo said boo about them and I have never missed and endo appointment. I set up the basals. We are the primary care givers and that is not only fine with her care team it is their stated goal.
Complex, No kidding? You should shave seen them when we needed hourly changes to average half the incremental change rate of the pump was capable of. Looked like a roller coaster.
Doh! I know they need changing. I told you that when she checked in but seeing how she was running daytime lows at Disney on a 10% reduced basal I didn’t really feel like changing them in the 36 hours between then and camp. Oh I told you that too.
Not for nothing y’all didn’t impress me when we checked in and with an unknown physical activity schedule I voted for running basals on the low side rather than risk a lot of lows on the BG side.
Oh and she is a total queen at making temp changes when asked to, can do most of her self care. She is ahead of where her brother was in both age and time from diagnosis on every type 1 skill. She is fairly good about combo blousing when she needs, asking us if she should.
Her reading needs work. Her penmanship could show a little more care. Her room is a rat’s nest. She needs to help out with the dishes and is due to better learn how the laundry works. She could be a little better at carb counting and I think in the grand scheme of things those take precedence over basal tuning.
But what do I know?
I’m am not the mother.
Delaney loved camp.
Camp requires a form be filled out with her the basal rates. So the night, after the picnic, I wrote them all down. I did the best I could but some of her's are odd, starting on the half hour at times, they didn’t fit the camp's form cleanly. Her basal are all over the place a mixture resulting from trial and error. A product of evolution, they worked.
She was due for some serious adjustments. Her A1C, at her check up, hours before leaving for FFL was on the higher than we would like side. But We didn’t want to mess too much with basal rates at the convention and subsequent week of walking around Disney. At Disney she was running on the low side probably as a result of all the walking and the hotter than the surface of the sun paths we were walking on.
Anyway checking in to camp, they didn’t want to look at the form. They started reading off basals from the pump. OK, why the form but ok.
Until they flat out got it wrong. So wrong it just jumped out - 6:00 am to midnight x. Wait my brain said, (OK me and 'brain' may be mutually exclusive, M&M size clump of nerve endings may be better.) But even the M&M size clump of nerve endings knew there are all those strange afternoon gyrations and the ramp up for the growth hormones that hit right after she goes to sleep. There was a lot of error in the trial and error that got to these numbers and I did a lot of it, error making that is. You have seen my spelling. You gotta know I make a lot of errors.
So I said, "No, that's wrong. Her basals don’t go flat from 6:00 am to midnight and why do you have us fill in this form if your just going to blow it off?"
Well they said they assume that the form is wrong - filled out a few weeks ago - so they don’t use it.
OK so why send it out then? And you are still not reading her pump right.
Oh well they know they were reading it wrong but they “were waiting for the mother” to come bask to ask her about the pump.
That went over really well.
Well maybe not.
So when we picked her up a week later the Endo fellow had a few fine points for me.
The form was wrong.
Did the doctor set up these basals, because a doctor should?
They are very complex.
She is running high and the basals need changing.
Delaney doesn’t know how to adjust her basals and she should.
And her I:C ratio needed a tweak.
Thanks. Love Ya / Mean It.
The form - nice of you to actually look at it. What was off what I wrote or what you wrote? No answer. Speaks for itself.
No the doctor never looks at her basals, occasionally the nurse talks them over with us but I can't recall once in three years when the Endo said boo about them and I have never missed and endo appointment. I set up the basals. We are the primary care givers and that is not only fine with her care team it is their stated goal.
Complex, No kidding? You should shave seen them when we needed hourly changes to average half the incremental change rate of the pump was capable of. Looked like a roller coaster.
Doh! I know they need changing. I told you that when she checked in but seeing how she was running daytime lows at Disney on a 10% reduced basal I didn’t really feel like changing them in the 36 hours between then and camp. Oh I told you that too.
Not for nothing y’all didn’t impress me when we checked in and with an unknown physical activity schedule I voted for running basals on the low side rather than risk a lot of lows on the BG side.
Oh and she is a total queen at making temp changes when asked to, can do most of her self care. She is ahead of where her brother was in both age and time from diagnosis on every type 1 skill. She is fairly good about combo blousing when she needs, asking us if she should.
Her reading needs work. Her penmanship could show a little more care. Her room is a rat’s nest. She needs to help out with the dishes and is due to better learn how the laundry works. She could be a little better at carb counting and I think in the grand scheme of things those take precedence over basal tuning.
But what do I know?
I’m am not the mother.
Delaney loved camp.
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