First, I want to thank everyone who has sent me pictures and info for "Faces of Hope". I now have 22 hopeful faces. It's not too late to submit your picture and info if you haven't done it yet.
At my walk last year, in addition to Faces of Hope, I also did a presentation with some facts about Type 1 diabetes along with some facts about The Iacocca Foundation.
This year I wanted to do something different. But, I didn't know what. I thought about making it sort of a day-in-the-life-of-Riley thing. You know, take pictures of Riley checking his sugar, drinking a juice when he's low, that sort of thing. But, somehow it didn't seem quite right to me.
This morning on the way to work I was thinking about it again. You know how I feel about educating people about Type 1 diabetes.
I've posted before that it is hard for me to really educate people about this disease. I can tell them statistics, I can explain that it's an autoimmune disease, and I can tell someone how often Riley must check his sugar. But, somehow my words seem to ring hollow. I can't quite describe what it's really like.
Maybe it's because I don't have diabetes. I only have second-hand knowledge of the disease. I do know that it is so much more than insulin and finger sticks. But, I have trouble articulating exactly what it is other than that.
So, I have decided to do a presentation this year with Type 1 diabetes facts. You know, incidence of diabetes, that it's an autoimmune disease, the highs, the low, things like that.
But, in between those stats, I want to put some quotes by some of you.
What do you want people to know about Type 1 diabetes? What is important for them to know?
Just a few sentences will do. Along with that please include your name (just first name will be fine), age, and how long you have had diabetes.
The quote can be about a positive or a negative. Whatever it is that you want people to know about this disease.
This is not just for the adults. Parents please ask your kids what they want others to know about their disease.
Sorry this is so last minute. If you can help me out I would really appreciate it.
If you want to participate you can leave your answer in the comments section or you can email it to me at pennylane5001@mchsi.com
An example of how I'll present it is kind of like this: "Riley is just like you and me, he just wears his pancreas in his pocket."--Holden, big brother to Riley, age 5, living with diabetes for 2 years.
Thursday, September 27, 2007
Wednesday, September 26, 2007
School Update
I haven't written anything about Riley and school lately. Mainly because things have been going fine.
He hasn't had a low at school in a while. His last one was one day last week and it was only a 73 that appeared at lunchtime. He's been in the lower 200s a few times and it is always at morning snack. That number has always been the hardest for us to reign in anyway.
We haven't had anymore problems with administration. In fact, they seem to have just left us alone to do our own thing. I like it that way.
His teacher continues to amaze me. She is doing really well with Riley. She's doing so well, in fact, that I told her she could stop calling me every time she gives Riley insulin. The first few weeks she would have Riley test and after he had eaten she would call and say, " His sugar is __, he ate ___ carbs, he has ___ units on board, and the pump says to give him___ units." Then, I would tell her how many to give. Sometimes I gave what the pump suggested and other times I did not.
But, after a while I noticed I was telling her to give what the pump suggested every time. So, I wrote her a note and told her that she didn't have to call anymore if she doesn't want to. But, I did ask that she call me if his sugar is <80>200 at his meals. Why? I don't know, because I want to know, I guess. I can't quite let go of the reigns completely. I don't know if I ever will.
After the pump fiasco yesterday, I wasn't very happy sending Riley to school. What if his pump failed?
First off, I realized around 9:00 that when I changed his pump battery it cancelled the temp basal I had set. If I don't decrease Riley's basal by 60% for 3.5 hours after a site change he has severe lows. So, I called Holden and had him go decrease Riley's basal for me. OK, one crisis adverted.
Then, about 30 minutes later, his teacher called. His snack time sugar was 304. The pump suggested to give him 1.10 units for that and his snack. I told her to give him 1.00. Then, a couple of minutes later I remembered that because I had changed the battery after his breakfast bolus that the insulin on board had been erased. I calculated that Riley had probably received about .4 or .5 more units of insulin than he probably needed. That's a lot of extra insulin for his little body.
So, I called the teacher again and asked that she check Riley's sugar again in an hour because I was afraid he had gotten too much insulin and his sugar might crash.
An hour later, I was at a patient's house. This particular patient I have been seeing every week for over 9 years. My kids have been to see him. He's like a part of the family. One of the first things he asks every week is : "How are my boys doing?"
The phone rang in the middle of his dressing change. I excused myself and answered it. "Hi, Penny. This is P." I could hear the panic in her voice. "Riley's sugar is 384. What do I do?"
I was silent for a minute. I couldn't think. I was afraid to tell her to give him more insulin because he had just gotten insulin an hour earlier. But, I didn't want his sugar to go up any more. And, I was very afraid that either his pump wasn't working properly or the site change I had done earlier that morning was bad.
I told her that I would call my mom to come pick Riley up. She said, "I'm sorry. I wish I knew what to do." I told her that was OK, I didn't even know what to do myself.
Then, I called my mom and asked that she go get Riley. As I explained that his sugar was 384, my voice caught in my throat and I began to cry. I couldn't help it. I didn't want to. But, I did it anyway.
My patient just lay there silently. I felt so bad for crying, but my emotions just got the best of me. I sucked it up and finished his dressing change. All the while I kept thinking, "I can't take this anymore." over and over.
I was about 45 minutes away from home. I left my patient's and went to my mom's. An hour had passed since he had last checked his sugar.
I found him in the back yard with my mom. He ran up to me with his pirate's sword in his hand and ,while grinning from ear to ear ,invited me into his castle. My mom had built him a little fort in the back yard to play in.
She said he wasn't upset about leaving school. He was just upset that he wouldn't get to "play pirates" on the playground. So, my mom made it so he could play pirates at her house.
I ushered him into my mom's house with a bottle of ketone strips in my hand. It was lunchtime now, so I checked his sugar. It was 166.
I felt like such a fool. He would have been fine at school. All I could think when his teacher said his sugar was 384 was that I wanted him with me.
Everyone who deals with this disease knows that it's kind of a learn as you go disease. This school thing is new and I'm still learning.
His teacher just called and his snack sugar is 292. Ugh. I hate this disease. Really, really hate it.
I'm not panicing now. Now, I'm just mad.
He hasn't had a low at school in a while. His last one was one day last week and it was only a 73 that appeared at lunchtime. He's been in the lower 200s a few times and it is always at morning snack. That number has always been the hardest for us to reign in anyway.
We haven't had anymore problems with administration. In fact, they seem to have just left us alone to do our own thing. I like it that way.
His teacher continues to amaze me. She is doing really well with Riley. She's doing so well, in fact, that I told her she could stop calling me every time she gives Riley insulin. The first few weeks she would have Riley test and after he had eaten she would call and say, " His sugar is __, he ate ___ carbs, he has ___ units on board, and the pump says to give him___ units." Then, I would tell her how many to give. Sometimes I gave what the pump suggested and other times I did not.
But, after a while I noticed I was telling her to give what the pump suggested every time. So, I wrote her a note and told her that she didn't have to call anymore if she doesn't want to. But, I did ask that she call me if his sugar is <80>200 at his meals. Why? I don't know, because I want to know, I guess. I can't quite let go of the reigns completely. I don't know if I ever will.
After the pump fiasco yesterday, I wasn't very happy sending Riley to school. What if his pump failed?
First off, I realized around 9:00 that when I changed his pump battery it cancelled the temp basal I had set. If I don't decrease Riley's basal by 60% for 3.5 hours after a site change he has severe lows. So, I called Holden and had him go decrease Riley's basal for me. OK, one crisis adverted.
Then, about 30 minutes later, his teacher called. His snack time sugar was 304. The pump suggested to give him 1.10 units for that and his snack. I told her to give him 1.00. Then, a couple of minutes later I remembered that because I had changed the battery after his breakfast bolus that the insulin on board had been erased. I calculated that Riley had probably received about .4 or .5 more units of insulin than he probably needed. That's a lot of extra insulin for his little body.
So, I called the teacher again and asked that she check Riley's sugar again in an hour because I was afraid he had gotten too much insulin and his sugar might crash.
An hour later, I was at a patient's house. This particular patient I have been seeing every week for over 9 years. My kids have been to see him. He's like a part of the family. One of the first things he asks every week is : "How are my boys doing?"
The phone rang in the middle of his dressing change. I excused myself and answered it. "Hi, Penny. This is P." I could hear the panic in her voice. "Riley's sugar is 384. What do I do?"
I was silent for a minute. I couldn't think. I was afraid to tell her to give him more insulin because he had just gotten insulin an hour earlier. But, I didn't want his sugar to go up any more. And, I was very afraid that either his pump wasn't working properly or the site change I had done earlier that morning was bad.
I told her that I would call my mom to come pick Riley up. She said, "I'm sorry. I wish I knew what to do." I told her that was OK, I didn't even know what to do myself.
Then, I called my mom and asked that she go get Riley. As I explained that his sugar was 384, my voice caught in my throat and I began to cry. I couldn't help it. I didn't want to. But, I did it anyway.
My patient just lay there silently. I felt so bad for crying, but my emotions just got the best of me. I sucked it up and finished his dressing change. All the while I kept thinking, "I can't take this anymore." over and over.
I was about 45 minutes away from home. I left my patient's and went to my mom's. An hour had passed since he had last checked his sugar.
I found him in the back yard with my mom. He ran up to me with his pirate's sword in his hand and ,while grinning from ear to ear ,invited me into his castle. My mom had built him a little fort in the back yard to play in.
She said he wasn't upset about leaving school. He was just upset that he wouldn't get to "play pirates" on the playground. So, my mom made it so he could play pirates at her house.
I ushered him into my mom's house with a bottle of ketone strips in my hand. It was lunchtime now, so I checked his sugar. It was 166.
I felt like such a fool. He would have been fine at school. All I could think when his teacher said his sugar was 384 was that I wanted him with me.
Everyone who deals with this disease knows that it's kind of a learn as you go disease. This school thing is new and I'm still learning.
His teacher just called and his snack sugar is 292. Ugh. I hate this disease. Really, really hate it.
I'm not panicing now. Now, I'm just mad.
Tuesday, September 25, 2007
Pumpy the 7th and WDD
There seems to be a theme emerging here.
This morning was a site change morning. I was kind of glad considering the night Riley had. He clocked in, in the 300s twice in the middle of the night, then down to 219. He awoke this morning with a sugar of 173.
After I changed his site, he continued to eat breakfast. Then, I gave him his bolus.
A few minutes later I heard "Fer Elise" coming from the living room. Uh, oh. That is the song that Riley's pump plays when it alarms.
Michael checked the pump and it said "Low Battery". OK, that was something I could handle.
I got a coin and unscrewed the battery cap and removed a very wet, corroded battery. What?!? How in the world did that happen? I knew the battery wasn't old. We've only had this pump for 3 months.
The rest of the pump looked fine. So, I cleaned out the battery compartment as best I could with a q-tip and popped in a new battery. Then I went through the routine of rewinding it, loading the cartridge, and priming the tubing for a second time.
Then, I sent him off to school praying that it will work OK. And, so far, it has.
But, I called Animas and told them what had happened. Pump number 7 will be delivered tomorrow. I'm just glad that Animas has such good customer service.
------------------------------------------------------------------------------------------------
Also, I received an email this morning about World Diabetes Day on November 14. I just wanted to share some of it with you.
"This year we are asking every city, town and village to acknowledge World diabetes Day and recognize diabetes as "a chronic, debilitating and costly disease associated with severe complications, which poses severe risks for families."
We need monuments of local and national importance from the village hall to the tallest tower to light up in the colour blue of the UN flag (Pantone 279 or as near as possible).
Among the monuments involved we can count the Empire State Building in New York, the Citadel and Library in Alexandria, the Blue Mosque in Turkey and the London Eye.
An up-to-date list of the buildings that have thus far agreed or declined to join the celebrations can be found on the World Diabetes Day website.
We need your help in adding monuments to the list. Let us know the monuments you are pursuing and those that have declined. "
Go here to check out a list of monuments that are participating.
If you know of a monument or site that is willing to participate you can let WDD know at the link above also.
Also World Diabetes Day has a new website: "The site provides a central location for all World Diabetes Day materials and information." It can be found at http://www.worlddiabetesday.org/.
I went to the site this morning and it has a lot of great stuff there. It details ways you can get involved in promoting this day.
There is a page outlining events that are scheduled for that day. Check it out. There may be one near you.
And, if you have a blog and haven't added a WDD banner, what are you waiting for? Go here to get the code for your banner.
This is an opportunity for us to make a difference. We are always talking about educating people about this disease. Thanks to WDD, here's a chance to do it on a grand scale.
This morning was a site change morning. I was kind of glad considering the night Riley had. He clocked in, in the 300s twice in the middle of the night, then down to 219. He awoke this morning with a sugar of 173.
After I changed his site, he continued to eat breakfast. Then, I gave him his bolus.
A few minutes later I heard "Fer Elise" coming from the living room. Uh, oh. That is the song that Riley's pump plays when it alarms.
Michael checked the pump and it said "Low Battery". OK, that was something I could handle.
I got a coin and unscrewed the battery cap and removed a very wet, corroded battery. What?!? How in the world did that happen? I knew the battery wasn't old. We've only had this pump for 3 months.
The rest of the pump looked fine. So, I cleaned out the battery compartment as best I could with a q-tip and popped in a new battery. Then I went through the routine of rewinding it, loading the cartridge, and priming the tubing for a second time.
Then, I sent him off to school praying that it will work OK. And, so far, it has.
But, I called Animas and told them what had happened. Pump number 7 will be delivered tomorrow. I'm just glad that Animas has such good customer service.
------------------------------------------------------------------------------------------------
Also, I received an email this morning about World Diabetes Day on November 14. I just wanted to share some of it with you.
"This year we are asking every city, town and village to acknowledge World diabetes Day and recognize diabetes as "a chronic, debilitating and costly disease associated with severe complications, which poses severe risks for families."
We need monuments of local and national importance from the village hall to the tallest tower to light up in the colour blue of the UN flag (Pantone 279 or as near as possible).
Among the monuments involved we can count the Empire State Building in New York, the Citadel and Library in Alexandria, the Blue Mosque in Turkey and the London Eye.
An up-to-date list of the buildings that have thus far agreed or declined to join the celebrations can be found on the World Diabetes Day website.
We need your help in adding monuments to the list. Let us know the monuments you are pursuing and those that have declined. "
Go here to check out a list of monuments that are participating.
If you know of a monument or site that is willing to participate you can let WDD know at the link above also.
Also World Diabetes Day has a new website: "The site provides a central location for all World Diabetes Day materials and information." It can be found at http://www.worlddiabetesday.org/.
I went to the site this morning and it has a lot of great stuff there. It details ways you can get involved in promoting this day.
There is a page outlining events that are scheduled for that day. Check it out. There may be one near you.
And, if you have a blog and haven't added a WDD banner, what are you waiting for? Go here to get the code for your banner.
This is an opportunity for us to make a difference. We are always talking about educating people about this disease. Thanks to WDD, here's a chance to do it on a grand scale.
Friday, September 21, 2007
Does this bother you?
I'm paraphrasing here, but read this statement from a radio ad and see what you think:
"...kids eating school lunches leading them down the path to obesity and diabetes"
Does that statement bother anyone else?
It is a radio ad for Boar's Head turkey. I'm in the car a lot and I hear this ad every day, sometimes twice a day.
At first I tried to ignore it, but after hearing it so many times, it really started getting to me.
I am all for eating healthy and I believe an overhaul needs to be done to school lunch menus. But, this ad seems to perpetuate the myth that my son has diabetes because of the way he ate, or that all people that are overweight have type 2 diabetes.
Kids may become overweight from what they eat. But, there is no proof they will develop either type 1 or type 2 diabetes because of what they eat.
Type 1 diabetes is an autoimmune disease. And, just because you are obese doesn't mean you will develop type 2 diabetes either. There are many more factors that attribute to the disease, some of them genetic.
Anyway, just had to vent my frustrations here. I think it would be a good idea to pull the ad. My kid has enough stereotypes hanging over his head because of this disease. He doesn't need them perpetuated by a national ad campaign.
If it bothers you like it does me you can contact Boar's Head and let them know by calling: 1-888-884-2627. I can't find an email address. If any of you do, let me know what it is.
"...kids eating school lunches leading them down the path to obesity and diabetes"
Does that statement bother anyone else?
It is a radio ad for Boar's Head turkey. I'm in the car a lot and I hear this ad every day, sometimes twice a day.
At first I tried to ignore it, but after hearing it so many times, it really started getting to me.
I am all for eating healthy and I believe an overhaul needs to be done to school lunch menus. But, this ad seems to perpetuate the myth that my son has diabetes because of the way he ate, or that all people that are overweight have type 2 diabetes.
Kids may become overweight from what they eat. But, there is no proof they will develop either type 1 or type 2 diabetes because of what they eat.
Type 1 diabetes is an autoimmune disease. And, just because you are obese doesn't mean you will develop type 2 diabetes either. There are many more factors that attribute to the disease, some of them genetic.
Anyway, just had to vent my frustrations here. I think it would be a good idea to pull the ad. My kid has enough stereotypes hanging over his head because of this disease. He doesn't need them perpetuated by a national ad campaign.
If it bothers you like it does me you can contact Boar's Head and let them know by calling: 1-888-884-2627. I can't find an email address. If any of you do, let me know what it is.
Wednesday, September 19, 2007
Hopeful faces
Walk of Hope is coming up in a few short weeks. I am doing a presentation again this year entitled "The Faces of Hope".
It's just a little slide show of people with Type 1 with a info like their age, age at diagnosis, hobbies, where they live (if they chose to share). Along with that I need a picture.
I had 22 hopeful faces last year. But, this year I only have 10.
If any of you would like to help me out I'd appreciate it. The presentation will only be shared at the walk. It will not go up on YouTube or even my blog for public viewing.
If you'd like to help out email me a picture or two along with your information to pennylane5001@mchsi.com
Thanks!!!
It's just a little slide show of people with Type 1 with a info like their age, age at diagnosis, hobbies, where they live (if they chose to share). Along with that I need a picture.
I had 22 hopeful faces last year. But, this year I only have 10.
If any of you would like to help me out I'd appreciate it. The presentation will only be shared at the walk. It will not go up on YouTube or even my blog for public viewing.
If you'd like to help out email me a picture or two along with your information to pennylane5001@mchsi.com
Thanks!!!
Monday, September 17, 2007
Taking out frustrations
After reading over my last post I realized that maybe I shouldn't have said that certain people should kiss my butt. Besides being kind of juvenile, it also may make people feel like if they don't know anything about Type 1 diabetes then I am upset with them.
This is not the case at all. I don't expect people to know anything at all about Type 1 diabetes. I'm a nurse and I don't know things about certain diseases. In fact, until Riley was diagnosed with Type 1 diabetes the extent of my knowledge was that those with Type 1 were considered "insulin dependant". All I knew on the way to the hospital was that my son would have to take insulin. That was the extent of my knowledge. I had no idea how time-consuming this disease is. I really thought I would give him a couple of shots a day, same dose at the same time, and things would be OK. I had no idea how complex this disease really is.
But, I do expect that if you don't live with this disease to keep your opinions to yourself. Asking questions is perfectly fine. The only way to learn about this disease if you don't live with it is to ask questions. But, even then, you can't truly know what it's like.
I was talking with a couple of my co-workers the other day about the meeting at school. I was telling them that I had called the mother of one of the other kids at Riley's school who has D to see if she'd ever had similar problems with administration. She had not. This particular mom is also a nurse at another agency in town.
After I talked to her I visited a few patients and when I got back to the office I had a voicemail from a social worker at the same agency. This is someone I know pretty well. She's one of the better social workers. We share a couple of patients that don't live in the best of places so we visit them together every month.
The message went like this: " Hi, Penny. This is P. J told me what was going on with you and the school. My son has diabetes too. You stand your ground about this. Don't back down. I'll be thinking about you."
I nearly cried. I called her back and told her how nice it was. I had no idea her son had D too. At some point I said, "So, you really get it." To which she replied with a sad tone in her voice, "Yeah, I do." A lot was said with that statement.
I was telling my co-workers that even though they've seen me cry, they've seen me battle, they've seen the sleep deprivation on my face, they still don't know what it's like. They are both mothers and I told them that they have an idea of how horrible it would be. But, unless you are the mother of a child with diabetes you really don't know what it's like. I told them that what they imagine is probably only the tip of the iceberg to how it really is. I didn't say this to bring about pity. But, to point out that unless you live it, you really can't explain what it's like.
You can educate people about Type 1 diabetes. You can tell them about carb counting and giving insulin. You can tell them how to change a site and how to check a sugar.
But, this disease is so much more than carb counting and giving insulin. It is so much more than finger pricks and site changes or injections.
It is a all-consuming disease. It must be factored in to every single aspect of your life. Those who live with this disease, if they want to have decent control, have to think about it pretty much all the time. They can't eat without thinking about it. They can't drive a car without thinking about it. Those with a pump can't pick out an outfit without thinking about it. You can't sleep without thinking about it. You can't exercise without thinking about it.
Don't get me wrong. People with D don't sit around thinking about it all the time. It's just part of their life. I guess you get used to factoring it in to everything. You have to.
Still, there are the times, like yesterday, when Riley sugar went from 64 to 310 to 66 to 363. Those are the times I just want to scream. Those are the times I want to throw his pump across the room. Those are the times that I want to just give up.
I just want to be able to stop thinking for a little while. But, I can't. That is a luxury this disease will not let me have. You can't stop thinking about it, because it's not going anywhere. You can cry, you can throw things, you can curse the sugar machine as it flashes the word HI. But, you can't forget about it.
Some people try to forget about it. They go for months, sometimes years, just doing their own thing. But, they'll pay for it later. Diabetes always has the last word.
Educating people about Type 1 diabetes is a complicated process. For example, how we deal with Riley's diabetes is not how others deal with theirs or their child's. Everyone responds to carbs differently. They have different basal rates. They have different carb ratios. Some people require a lot of insulin to bring down their sugars, others only require a small amount for the exact same sugar.
An example is Charlie, Carey's son, he is the same age as Riley and also on a pump. Whenever we do a site change on Riley he tends to go low. We try to combat this by decreasing his basal by 60% for 3.5 hours after every site change. Charlie, however, tends to run high after his site changes. His parents increase his basal by 60% after his site changes.
I guess the gist of what I'm saying is this, even us who live with diabetes on a daily basis can't tell others what they should or should not be doing. Or what they should or should not be eating. This disease is so individualized that even we as parents of kids with D can't give out too much advice.
For example, Riley can eat cake and ice cream and have near-perfect sugars. But, another parent's kid may not be so lucky. Cake and ice cream may cause their sugar to go out of control every time they eat it. It would be easy for the mother of that child to judge me and say that I shouldn't let my child eat cake and ice cream because of what it does to their child's sugar.
I always feel inadequate trying to educate others about Type 1 diabetes. For one, you have to simplify everything. Diabetes is not cut and dry. But, when you explain it to someone you can't go into details about different carb ratios at certain times of the day. Or, that when Riley is playing he requires a decrease basal on his pump.
And, the whole "Riley can eat anything anyone else can eat." , well we (the ones who have D or whose kid has it) know that 's really not true. It is, but it isn't. That is hard to explain to someone else. Riley cannot have regular soda unless his sugar is low. He cannot have cotton candy at the fair. Lasagna is a treat saved for those times when his sugar has been cooperative for a period of time. Because I know that he will run high for several hours after he eats it.
I think sometimes my frustration comes, not from people's ignorance of or questions about this disease, but from my own inadequacy of explaining it to others.
Because, I want them to know what it's like. I want them to feel what it's like, just for a moment. So maybe they'll understand when Riley's sugar is high that usually it's nothing that he or I did wrong. Or, understand the pain that comes from watching your child prick his finger like it's nothing. Or, the absolute terror of seeing a reading of 42 on a sugar machine.
But, I can't. So, you see, maybe I'm not really mad at the people who don't know any better. Maybe I'm just mad at myself, because I just can't articulate it well enough to make them understand.
Maybe I'm just frustrated because I don't even understand it myself.
This is not the case at all. I don't expect people to know anything at all about Type 1 diabetes. I'm a nurse and I don't know things about certain diseases. In fact, until Riley was diagnosed with Type 1 diabetes the extent of my knowledge was that those with Type 1 were considered "insulin dependant". All I knew on the way to the hospital was that my son would have to take insulin. That was the extent of my knowledge. I had no idea how time-consuming this disease is. I really thought I would give him a couple of shots a day, same dose at the same time, and things would be OK. I had no idea how complex this disease really is.
But, I do expect that if you don't live with this disease to keep your opinions to yourself. Asking questions is perfectly fine. The only way to learn about this disease if you don't live with it is to ask questions. But, even then, you can't truly know what it's like.
I was talking with a couple of my co-workers the other day about the meeting at school. I was telling them that I had called the mother of one of the other kids at Riley's school who has D to see if she'd ever had similar problems with administration. She had not. This particular mom is also a nurse at another agency in town.
After I talked to her I visited a few patients and when I got back to the office I had a voicemail from a social worker at the same agency. This is someone I know pretty well. She's one of the better social workers. We share a couple of patients that don't live in the best of places so we visit them together every month.
The message went like this: " Hi, Penny. This is P. J told me what was going on with you and the school. My son has diabetes too. You stand your ground about this. Don't back down. I'll be thinking about you."
I nearly cried. I called her back and told her how nice it was. I had no idea her son had D too. At some point I said, "So, you really get it." To which she replied with a sad tone in her voice, "Yeah, I do." A lot was said with that statement.
I was telling my co-workers that even though they've seen me cry, they've seen me battle, they've seen the sleep deprivation on my face, they still don't know what it's like. They are both mothers and I told them that they have an idea of how horrible it would be. But, unless you are the mother of a child with diabetes you really don't know what it's like. I told them that what they imagine is probably only the tip of the iceberg to how it really is. I didn't say this to bring about pity. But, to point out that unless you live it, you really can't explain what it's like.
You can educate people about Type 1 diabetes. You can tell them about carb counting and giving insulin. You can tell them how to change a site and how to check a sugar.
But, this disease is so much more than carb counting and giving insulin. It is so much more than finger pricks and site changes or injections.
It is a all-consuming disease. It must be factored in to every single aspect of your life. Those who live with this disease, if they want to have decent control, have to think about it pretty much all the time. They can't eat without thinking about it. They can't drive a car without thinking about it. Those with a pump can't pick out an outfit without thinking about it. You can't sleep without thinking about it. You can't exercise without thinking about it.
Don't get me wrong. People with D don't sit around thinking about it all the time. It's just part of their life. I guess you get used to factoring it in to everything. You have to.
Still, there are the times, like yesterday, when Riley sugar went from 64 to 310 to 66 to 363. Those are the times I just want to scream. Those are the times I want to throw his pump across the room. Those are the times that I want to just give up.
I just want to be able to stop thinking for a little while. But, I can't. That is a luxury this disease will not let me have. You can't stop thinking about it, because it's not going anywhere. You can cry, you can throw things, you can curse the sugar machine as it flashes the word HI. But, you can't forget about it.
Some people try to forget about it. They go for months, sometimes years, just doing their own thing. But, they'll pay for it later. Diabetes always has the last word.
Educating people about Type 1 diabetes is a complicated process. For example, how we deal with Riley's diabetes is not how others deal with theirs or their child's. Everyone responds to carbs differently. They have different basal rates. They have different carb ratios. Some people require a lot of insulin to bring down their sugars, others only require a small amount for the exact same sugar.
An example is Charlie, Carey's son, he is the same age as Riley and also on a pump. Whenever we do a site change on Riley he tends to go low. We try to combat this by decreasing his basal by 60% for 3.5 hours after every site change. Charlie, however, tends to run high after his site changes. His parents increase his basal by 60% after his site changes.
I guess the gist of what I'm saying is this, even us who live with diabetes on a daily basis can't tell others what they should or should not be doing. Or what they should or should not be eating. This disease is so individualized that even we as parents of kids with D can't give out too much advice.
For example, Riley can eat cake and ice cream and have near-perfect sugars. But, another parent's kid may not be so lucky. Cake and ice cream may cause their sugar to go out of control every time they eat it. It would be easy for the mother of that child to judge me and say that I shouldn't let my child eat cake and ice cream because of what it does to their child's sugar.
I always feel inadequate trying to educate others about Type 1 diabetes. For one, you have to simplify everything. Diabetes is not cut and dry. But, when you explain it to someone you can't go into details about different carb ratios at certain times of the day. Or, that when Riley is playing he requires a decrease basal on his pump.
And, the whole "Riley can eat anything anyone else can eat." , well we (the ones who have D or whose kid has it) know that 's really not true. It is, but it isn't. That is hard to explain to someone else. Riley cannot have regular soda unless his sugar is low. He cannot have cotton candy at the fair. Lasagna is a treat saved for those times when his sugar has been cooperative for a period of time. Because I know that he will run high for several hours after he eats it.
I think sometimes my frustration comes, not from people's ignorance of or questions about this disease, but from my own inadequacy of explaining it to others.
Because, I want them to know what it's like. I want them to feel what it's like, just for a moment. So maybe they'll understand when Riley's sugar is high that usually it's nothing that he or I did wrong. Or, understand the pain that comes from watching your child prick his finger like it's nothing. Or, the absolute terror of seeing a reading of 42 on a sugar machine.
But, I can't. So, you see, maybe I'm not really mad at the people who don't know any better. Maybe I'm just mad at myself, because I just can't articulate it well enough to make them understand.
Maybe I'm just frustrated because I don't even understand it myself.
Friday, September 14, 2007
Just when I get comfortable...
I've been debating about posting this. But, it's what's on my mind lately. I've learned that sometimes just by writing about things I'm able to just let them go.
I had a message to call Riley's teacher when I got home Tuesday afternoon. I thought it was kind of strange because she always calls my cell phone. I soon found out why she called me at home. It turned into a marathon conversation.
She said that the elementary school principle had come to her and said that she thought it may be a liability issue for her to be giving Riley's insulin. And, that there is a teacher's aide at the school that is an EMT and had agreed to give Riley his insulin so his teacher could focus more on the class.
My hackles went up. First, the principle had made decisions about my son's health without ever consulting me. Sorry, but she doesn't just find any old body to give my child insulin. Secondly, Riley's teacher only deals with his insulin pump while all the kids are eating snack and lunch. It's not taking away from any class time.
I ranted and raved. The teacher agreed with everything I said. She said that she had no problem giving Riley his insulin. She said what happened was that she asked for some help at lunchtime and snack time. She has a full time assistant, but with the class size and the activity level of the class, she still needed a little more help. And, the fact that she had to help Riley with his insulin factored in too. But, she never asked for help with Riley. She asked for help getting snack and lunch passed out in the classroom.
I became even more irate. Riley may be part of the problem, but he is not the cause of the problem. She assured me that Riley is very well-behaved and that she has absolutely no problems out of him all day. I then asked how often she had to deal with his diabetes on an average day. (He hasn't gone low at school since the first week.) And she answered, only at snack and lunch.
I eventually calmed down. I asked her just to make sure if she was OK giving Riley's insulin. She assured me she was. She said it was a little overwhelming at first, but now she was very comfortable doing it. (Keep in mind, she doesn't check his sugar. She counts his carbs and administers his insulin. It's not a very time consuming task once you get used to it.)
Before I hung up, she said, "And, there's one more thing I want to mention to you." My heart dropped. "I just wanted to let you know that the principle (For the purposes of this post, I will call her Miss B.) questioned me about Riley eating school lunches."
She said that she was telling Miss B how helpful I had been and that I had gone to the lunch lady and figured out the carb counts for things so that Riley could eat school lunches.
She said Miss B was "appalled" that I would let Riley eat school lunches. And, she said that I should not let him eat any lunches from school until his sugars become stabilized. Also, she did not think that I should have let him have a cupcake at the birthday party that a little girl had at school one day.
My head nearly exploded. The teacher said she just wanted to let me know so that if it came up in conversation I wouldn't be blindsided. I told her I appreciated it. Because, if I didn't have that heads up I don't know what I would tell Miss B if she mentioned it to me. But, I can assure you it wouldn't be pretty.
So, first thing Wednesday morning I called the school to arrange a meeting with Miss B. I told them that the meeting had to occur that day because it affected my child's health. I also said that I wanted the main principle in the meeting too. (Riley's school has the head principle as well as a principle for the elementary school students and another for the middle and upper school students.) I said I wanted someone else in there to witness what was said.
Also, I had dealt with Miss B before. She has a tendency to not listen and she can be rude at times. If I went off on her I wanted a witness. I have also spoken with Mr. M (the head man) and find him to be helpful and accommodating.
Miss B called me back a little later and said she would be glad to meet with me. Then, she went on to say, "But, I'll be glad to just get someone to help Mrs. W pass out snack and lunch so that she can continue to give Riley his insulin."
I told her that sounded like a great idea, but I still wanted to meet with her. Oh, no, she wasn't getting off that easily. She was going to listen to what I had to say. And, I was going to say it all in front of her boss.
Michael and I met with her in Mr. M's office. She started off with, "I really hope there hasn't been any misunderstanding. I wasn't trying to make an 'administrative decision'. I just thought that it would make more sense if someone with a little medical background gave Riley his insulin instead."
Michael and I told her that it would make more sense to keep things like they are. Things were working just fine for the first 11 days. Now, all of a sudden, there is a problem. Also, I had spoken with Miss B about all of this before the school year ended last year. She told me then that I needed to work things out with Riley's teacher. And, that's exactly what I did.
Miss B then said, "Mrs. W is very comfortable giving Riley his insulin. She actually doesn't want to turn that over to anyone else."
I told her I didn't either, so I didn't really see where the problem was. She then said, "Well, Mrs. W came to me and said she needed help at snack and lunch. So, I just thought it would make sense to get someone with a little medical knowledge to take over doing the insulin pump for her."
Michael told her that he did not appreciate her jumping to the conclusion that if Mrs. W needed help it was because of the diabetic kid. Mrs. W has a pretty rowdy class. Some of the kids have problems sitting still. We have been assured by Mrs. W that Riley has been "a perfect angel". He said that he was upset that the 2-3 minutes that she spent dealing with Riley's pump was being made a big deal out of while she has other kids in her class that because of their behavior got way more of her time and attention.
Then I told her that Mrs. W had been trained to give Riley his insulin and that we started talking about it several months ago. Then, Michael piped in and told her that I have a BS degree in nursing and before Riley got the pump I had never even laid eyes on one before. So, he doubted an EMT would have any knowledge of the pump either.
I looked at Mr. M and said, "It seems to me that you don't need any training to open a milk carton for a kid. But, you do need training to give my son insulin. Why doesn't the teacher's aide assist with snack and lunch and just let Mrs. W. continue to give the insulin like before?"
He said, "As long as Mrs. W is fine giving his insulin and you are fine with her giving it, then I don't see why we need to change anything."
They decided to get the teacher's aide/EMT to go in the class at snack and lunch to help pass out the food while Mrs. W continued to give Riley his insulin.
Then, just when I thought things were over, Miss B said, "I was looking at the carb list you gave Mrs. W. And, I see that Riley is eating some school lunches (by the way, Riley has only eaten one school lunch since school started). I was just concerned because school lunches have a lot of carbs in them. Also, she said Riley ate a cupcake at a party the other day."
You see, it is good that Mrs. W had pre-warned me about this. Because, otherwise, I probably would have ripped this woman's head off and handed it to Mr. M. But, instead, I calmly explained that Riley can eat anything that any of the other kids can eat as long as he receives insulin. I also told her that if a meal he was eating had a little more carbs than I liked I was ordering Riley water to drink instead of milk, to cut down on the carb count. Then, I explained to her that it was important to me that Riley be treated like the rest of the kids as much as possible. I also told her that I was offended that she thought I would jeopardize my child's health in order to let him be like the other kids.
That's when Mr. M piped in and said, "Yeah, you're not going to let him eat a cupcake just so he can be like everyone else if it's going to kill him."
I then said that cake and ice cream don't really affect his sugar much at all. And, that the foods that do, pastas and for some reason Cheese Nips are limited to special occasions.
That was the gist of the meeting. We did spend more time chatting with Mr. M about his step-son who has gone off to boarding school but was in Holden's class last year. All while, Miss B sulked in the corner.
Later that night, after Riley had eaten a piece of my dad's birthday cake, I checked his sugar two hours later and it was 130. I just wanted to call Miss B up and tell her that she could kiss my butt. (Yes, I know my maturity level is astounding.) But, I'm sure she would just be appalled that I let him have cake at all.
I told Michael what bothers me most is that this is something Riley will have to deal with for the rest of his life. People who are ignorant about his disease, yet think they know everything. People who even after you tell them that yes, you can have that piece of cake shake their head and pity you because they think you are in denial about your own disease.
All those people that feel that way, they can kiss my butt too.
I had a message to call Riley's teacher when I got home Tuesday afternoon. I thought it was kind of strange because she always calls my cell phone. I soon found out why she called me at home. It turned into a marathon conversation.
She said that the elementary school principle had come to her and said that she thought it may be a liability issue for her to be giving Riley's insulin. And, that there is a teacher's aide at the school that is an EMT and had agreed to give Riley his insulin so his teacher could focus more on the class.
My hackles went up. First, the principle had made decisions about my son's health without ever consulting me. Sorry, but she doesn't just find any old body to give my child insulin. Secondly, Riley's teacher only deals with his insulin pump while all the kids are eating snack and lunch. It's not taking away from any class time.
I ranted and raved. The teacher agreed with everything I said. She said that she had no problem giving Riley his insulin. She said what happened was that she asked for some help at lunchtime and snack time. She has a full time assistant, but with the class size and the activity level of the class, she still needed a little more help. And, the fact that she had to help Riley with his insulin factored in too. But, she never asked for help with Riley. She asked for help getting snack and lunch passed out in the classroom.
I became even more irate. Riley may be part of the problem, but he is not the cause of the problem. She assured me that Riley is very well-behaved and that she has absolutely no problems out of him all day. I then asked how often she had to deal with his diabetes on an average day. (He hasn't gone low at school since the first week.) And she answered, only at snack and lunch.
I eventually calmed down. I asked her just to make sure if she was OK giving Riley's insulin. She assured me she was. She said it was a little overwhelming at first, but now she was very comfortable doing it. (Keep in mind, she doesn't check his sugar. She counts his carbs and administers his insulin. It's not a very time consuming task once you get used to it.)
Before I hung up, she said, "And, there's one more thing I want to mention to you." My heart dropped. "I just wanted to let you know that the principle (For the purposes of this post, I will call her Miss B.) questioned me about Riley eating school lunches."
She said that she was telling Miss B how helpful I had been and that I had gone to the lunch lady and figured out the carb counts for things so that Riley could eat school lunches.
She said Miss B was "appalled" that I would let Riley eat school lunches. And, she said that I should not let him eat any lunches from school until his sugars become stabilized. Also, she did not think that I should have let him have a cupcake at the birthday party that a little girl had at school one day.
My head nearly exploded. The teacher said she just wanted to let me know so that if it came up in conversation I wouldn't be blindsided. I told her I appreciated it. Because, if I didn't have that heads up I don't know what I would tell Miss B if she mentioned it to me. But, I can assure you it wouldn't be pretty.
So, first thing Wednesday morning I called the school to arrange a meeting with Miss B. I told them that the meeting had to occur that day because it affected my child's health. I also said that I wanted the main principle in the meeting too. (Riley's school has the head principle as well as a principle for the elementary school students and another for the middle and upper school students.) I said I wanted someone else in there to witness what was said.
Also, I had dealt with Miss B before. She has a tendency to not listen and she can be rude at times. If I went off on her I wanted a witness. I have also spoken with Mr. M (the head man) and find him to be helpful and accommodating.
Miss B called me back a little later and said she would be glad to meet with me. Then, she went on to say, "But, I'll be glad to just get someone to help Mrs. W pass out snack and lunch so that she can continue to give Riley his insulin."
I told her that sounded like a great idea, but I still wanted to meet with her. Oh, no, she wasn't getting off that easily. She was going to listen to what I had to say. And, I was going to say it all in front of her boss.
Michael and I met with her in Mr. M's office. She started off with, "I really hope there hasn't been any misunderstanding. I wasn't trying to make an 'administrative decision'. I just thought that it would make more sense if someone with a little medical background gave Riley his insulin instead."
Michael and I told her that it would make more sense to keep things like they are. Things were working just fine for the first 11 days. Now, all of a sudden, there is a problem. Also, I had spoken with Miss B about all of this before the school year ended last year. She told me then that I needed to work things out with Riley's teacher. And, that's exactly what I did.
Miss B then said, "Mrs. W is very comfortable giving Riley his insulin. She actually doesn't want to turn that over to anyone else."
I told her I didn't either, so I didn't really see where the problem was. She then said, "Well, Mrs. W came to me and said she needed help at snack and lunch. So, I just thought it would make sense to get someone with a little medical knowledge to take over doing the insulin pump for her."
Michael told her that he did not appreciate her jumping to the conclusion that if Mrs. W needed help it was because of the diabetic kid. Mrs. W has a pretty rowdy class. Some of the kids have problems sitting still. We have been assured by Mrs. W that Riley has been "a perfect angel". He said that he was upset that the 2-3 minutes that she spent dealing with Riley's pump was being made a big deal out of while she has other kids in her class that because of their behavior got way more of her time and attention.
Then I told her that Mrs. W had been trained to give Riley his insulin and that we started talking about it several months ago. Then, Michael piped in and told her that I have a BS degree in nursing and before Riley got the pump I had never even laid eyes on one before. So, he doubted an EMT would have any knowledge of the pump either.
I looked at Mr. M and said, "It seems to me that you don't need any training to open a milk carton for a kid. But, you do need training to give my son insulin. Why doesn't the teacher's aide assist with snack and lunch and just let Mrs. W. continue to give the insulin like before?"
He said, "As long as Mrs. W is fine giving his insulin and you are fine with her giving it, then I don't see why we need to change anything."
They decided to get the teacher's aide/EMT to go in the class at snack and lunch to help pass out the food while Mrs. W continued to give Riley his insulin.
Then, just when I thought things were over, Miss B said, "I was looking at the carb list you gave Mrs. W. And, I see that Riley is eating some school lunches (by the way, Riley has only eaten one school lunch since school started). I was just concerned because school lunches have a lot of carbs in them. Also, she said Riley ate a cupcake at a party the other day."
You see, it is good that Mrs. W had pre-warned me about this. Because, otherwise, I probably would have ripped this woman's head off and handed it to Mr. M. But, instead, I calmly explained that Riley can eat anything that any of the other kids can eat as long as he receives insulin. I also told her that if a meal he was eating had a little more carbs than I liked I was ordering Riley water to drink instead of milk, to cut down on the carb count. Then, I explained to her that it was important to me that Riley be treated like the rest of the kids as much as possible. I also told her that I was offended that she thought I would jeopardize my child's health in order to let him be like the other kids.
That's when Mr. M piped in and said, "Yeah, you're not going to let him eat a cupcake just so he can be like everyone else if it's going to kill him."
I then said that cake and ice cream don't really affect his sugar much at all. And, that the foods that do, pastas and for some reason Cheese Nips are limited to special occasions.
That was the gist of the meeting. We did spend more time chatting with Mr. M about his step-son who has gone off to boarding school but was in Holden's class last year. All while, Miss B sulked in the corner.
Later that night, after Riley had eaten a piece of my dad's birthday cake, I checked his sugar two hours later and it was 130. I just wanted to call Miss B up and tell her that she could kiss my butt. (Yes, I know my maturity level is astounding.) But, I'm sure she would just be appalled that I let him have cake at all.
I told Michael what bothers me most is that this is something Riley will have to deal with for the rest of his life. People who are ignorant about his disease, yet think they know everything. People who even after you tell them that yes, you can have that piece of cake shake their head and pity you because they think you are in denial about your own disease.
All those people that feel that way, they can kiss my butt too.
Tuesday, September 11, 2007
Friday, September 07, 2007
Lunch Lady Land
I met with the lunch lady today to look at carb counts. She was very nice and accommodating. I looked at every can and box and saw what the carb count is per serving. The only problem is knowing how much of the serving Riley is actually getting at each meal. But, now I can at least make an educated guess as to how many carbs he's eating.
She was very nice. Her husband has Type 2 and she had a little bit of knowledge about carbohydrates. But, when I asked to see the ice cream cups to see how many carbs are in them I got a look. You know the one. The "should-you-really-be-feeding-your-kid-that" look.
So, I took that time to educate her about the difference between Type 1 and Type 2 and while her husband may be insulin resistant Riley does not make any insulin at all. I explained it to her like this, "When you eat ice cream your pancreas spits out insulin to cover that ice cream. Riley's does not. So, when he eats ice cream he has to take insulin through his pump to cover the ice cream. So, he can eat ice cream just like anyone else, he just has to take insulin for it."
I thought I got my point across. But, then she told me about "A" who is in high school and has D and how he eats too much candy. Well, I happen to know that A is very vigilant with his care. So, I proceeded to tell her that if A is eating candy then I'm sure he's taking insulin for it or he's eating it because his sugar is low.
All in all it went well. Like I said she was very nice. It just bothers me to think that when I let Riley have ice cream that people think I'm killing him.
But, I digress. Riley gets to eat cafeteria food next week and he's happy about that.
Since I had a meeting with the lunch lady today I have been singing the Adam Sandler song in my head for the last two days. I found this clip from Saturday Night Live. I am an Adam Sandler and a Chris Farley fan. This is one of the funniest skits I've ever seen. (Yeah, I have a weird sense of humor)
I hope you enjoy and I hope all of you have a great weekend.
Check out this video: adam sandler and chris farley, lunch lady land
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She was very nice. Her husband has Type 2 and she had a little bit of knowledge about carbohydrates. But, when I asked to see the ice cream cups to see how many carbs are in them I got a look. You know the one. The "should-you-really-be-feeding-your-kid-that" look.
So, I took that time to educate her about the difference between Type 1 and Type 2 and while her husband may be insulin resistant Riley does not make any insulin at all. I explained it to her like this, "When you eat ice cream your pancreas spits out insulin to cover that ice cream. Riley's does not. So, when he eats ice cream he has to take insulin through his pump to cover the ice cream. So, he can eat ice cream just like anyone else, he just has to take insulin for it."
I thought I got my point across. But, then she told me about "A" who is in high school and has D and how he eats too much candy. Well, I happen to know that A is very vigilant with his care. So, I proceeded to tell her that if A is eating candy then I'm sure he's taking insulin for it or he's eating it because his sugar is low.
All in all it went well. Like I said she was very nice. It just bothers me to think that when I let Riley have ice cream that people think I'm killing him.
But, I digress. Riley gets to eat cafeteria food next week and he's happy about that.
Since I had a meeting with the lunch lady today I have been singing the Adam Sandler song in my head for the last two days. I found this clip from Saturday Night Live. I am an Adam Sandler and a Chris Farley fan. This is one of the funniest skits I've ever seen. (Yeah, I have a weird sense of humor)
I hope you enjoy and I hope all of you have a great weekend.
Check out this video: adam sandler and chris farley, lunch lady land
Add to My Profile More Videos
Thursday, September 06, 2007
Some going-ons
Just some going-ons:
** Riley's sugars have evened out a bit at school. He is not going low as much. His lows are starting to show a pattern, so I decreased some basals last night to see if that will do the trick.
** Holden is not bolusing Riley anymore. His teacher called me at snack time yesterday and said, "I'm doing it on my own today." She then said, "OK, Riley's sugar is 310 (yeah, I know, I'm working on it) and he ate 15 g of carbs. It says to give him 1.2 units of insulin and he has .05 units of insulin on board." I was pretty impressed. I just love this woman. Have I mentioned that?
** Holden is a little relieved to not have to get out of class anymore. (See, I said he was a good kid.) "Mom, Mrs. M goes over Pre-Calculus so fast that I miss too much stuff when I leave to give Riley his insulin." Now, he's not missing it anymore.
** Riley told me a secret yesterday about a kid in his class. Apparently, A, his reported best friend in his class, has a girlfriend. When I asked Riley if he has a girlfriend he smiled and said, "No, Mom." But, apparently there is a girl in his class who he thinks is pretty. He doesn't know her name, but "She has brown hair like me."
** When I called my mom yesterday afternoon to see what Riley's sugar was when he got home from school, she said she hadn't checked it yet because Holden was just pulling into the driveway. Why was he late? A kid pulled out in the parking lot at school and ran into Holden's car. Holden and Riley were both in the car and are fine. But, Holden's front bumper is not. There is a lot of paint scraped off of it. Since it was the other kid's fault, he will be paying for the repairs. Evidently, he hit him kind of hard because Holden said the other kid's bumper fell off.
** Riley has been taking his lunch to school so far. He started bugging me a couple of days ago to let him start ordering food from the cafeteria. So, I have a meeting with the lunch lady ("in lunch lady land"-anyone know that song?) tomorrow to see if I can figure out some carb counts.
** Riley starts soccer practice on Tuesday. Remember last year when he started soccer? On the first day I found out his coach was a diabetes educator. I was so happy. Well, this year it's even better. His coaches are a mom and dad to a kid who has D. Isn't that great? Yeah, it's me and Michael. I don't know how we get talked into these things. I know nothing about soccer. Michael loves soccer though. I told him he can do the coaching and I'll just try to make sure no one gets hurt and that they all get about the same amount of playing time.
** I have decided to get the whole school involved in my walk this year. (shameless plug coming: Walk of Hope is October 6. Please see the link in my sidebar if you would like to donate.) I will be typing out a letter that will go out in the kid's book bags. I'm nervous about it. I want to educate, but I don't want to overwhelm. I want people to know what Riley does every day and why it is so important to find a cure , but I don't want their sympathy.
** Riley's teacher just called about his morning snack. His sugar was 260 this morning. Here's my problem. He's usually high at snack , but if he gets a correction he goes too low by lunch. I've increased his insulin sensitivity a lot already. Do you think I should increase it more? He seems to only go low at lunch if he gets a correction. So that's probably the problem, right?
** I am tired of being a pancreas.
** Riley's sugars have evened out a bit at school. He is not going low as much. His lows are starting to show a pattern, so I decreased some basals last night to see if that will do the trick.
** Holden is not bolusing Riley anymore. His teacher called me at snack time yesterday and said, "I'm doing it on my own today." She then said, "OK, Riley's sugar is 310 (yeah, I know, I'm working on it) and he ate 15 g of carbs. It says to give him 1.2 units of insulin and he has .05 units of insulin on board." I was pretty impressed. I just love this woman. Have I mentioned that?
** Holden is a little relieved to not have to get out of class anymore. (See, I said he was a good kid.) "Mom, Mrs. M goes over Pre-Calculus so fast that I miss too much stuff when I leave to give Riley his insulin." Now, he's not missing it anymore.
** Riley told me a secret yesterday about a kid in his class. Apparently, A, his reported best friend in his class, has a girlfriend. When I asked Riley if he has a girlfriend he smiled and said, "No, Mom." But, apparently there is a girl in his class who he thinks is pretty. He doesn't know her name, but "She has brown hair like me."
** When I called my mom yesterday afternoon to see what Riley's sugar was when he got home from school, she said she hadn't checked it yet because Holden was just pulling into the driveway. Why was he late? A kid pulled out in the parking lot at school and ran into Holden's car. Holden and Riley were both in the car and are fine. But, Holden's front bumper is not. There is a lot of paint scraped off of it. Since it was the other kid's fault, he will be paying for the repairs. Evidently, he hit him kind of hard because Holden said the other kid's bumper fell off.
** Riley has been taking his lunch to school so far. He started bugging me a couple of days ago to let him start ordering food from the cafeteria. So, I have a meeting with the lunch lady ("in lunch lady land"-anyone know that song?) tomorrow to see if I can figure out some carb counts.
** Riley starts soccer practice on Tuesday. Remember last year when he started soccer? On the first day I found out his coach was a diabetes educator. I was so happy. Well, this year it's even better. His coaches are a mom and dad to a kid who has D. Isn't that great? Yeah, it's me and Michael. I don't know how we get talked into these things. I know nothing about soccer. Michael loves soccer though. I told him he can do the coaching and I'll just try to make sure no one gets hurt and that they all get about the same amount of playing time.
** I have decided to get the whole school involved in my walk this year. (shameless plug coming: Walk of Hope is October 6. Please see the link in my sidebar if you would like to donate.) I will be typing out a letter that will go out in the kid's book bags. I'm nervous about it. I want to educate, but I don't want to overwhelm. I want people to know what Riley does every day and why it is so important to find a cure , but I don't want their sympathy.
** Riley's teacher just called about his morning snack. His sugar was 260 this morning. Here's my problem. He's usually high at snack , but if he gets a correction he goes too low by lunch. I've increased his insulin sensitivity a lot already. Do you think I should increase it more? He seems to only go low at lunch if he gets a correction. So that's probably the problem, right?
** I am tired of being a pancreas.
Wednesday, September 05, 2007
Imagine
All you parents out there, just imagine that you could not afford life-saving insulin for your child. That you had to watch them suffer and die from a treatable disease because you just didn't have the means to afford the drug that could keep them alive.
This is a reality for parents all around the world every day.
While we complain that insurance doesn't cover enough strips, some people with diabetes don't even have a sugar machine. While we complain that the doctor doesn't spend enough time with us at our appointment, there are those that die from this disease before they are even able to see a doctor.
Please take a moment to go to Nicole's blog and read her post about World Diabetes Day and why it is so important that we become involved.
Then go download a banner of your own to put on your blog.
This is a reality for parents all around the world every day.
While we complain that insurance doesn't cover enough strips, some people with diabetes don't even have a sugar machine. While we complain that the doctor doesn't spend enough time with us at our appointment, there are those that die from this disease before they are even able to see a doctor.
Please take a moment to go to Nicole's blog and read her post about World Diabetes Day and why it is so important that we become involved.
Then go download a banner of your own to put on your blog.
Choices
A lot of people's emotions and attitudes are what they allow them to be. If a person focuses on the negative then they probably won't enjoy life very much. But, there are some people who don't have very many positives in their life, yet they focus on those few positives rather than the overwhelming negatives. They tend to have the best life of all.
It's all in how you look at it. And, I've been looking at it all wrong.
Some of you who read my blog regularly might find this hard to believe, but I am usually a very positive person. I don't tend to sweat the small stuff or the big stuff for that matter. I believe there is no reason to get worked up about something. If you can change the situation, then change it. And, if you can't, there is no reason to dwell on it, because you can't do anything about it anyway.
Sounds great doesn't it? It almost sounds easy. But, it's like diabetes is kryptonite to being positive for me. Sure, I have my moments where I think Riley will be OK. But, they are usually followed by a low, low or high, high which brings me back down to reality.
The other day my mom was asking why I thought Riley's sugar went so high. And, my answer was, "I don't know. Sometimes it just is what it is." It is. Sometimes you can do everything "right" and yet you still get crappy numbers. I guess that's what bothers me the most. I really have no control over what is happening with my child. Well, that's not true. OK, so I have minimal control.
Now that Riley is settled back into school I'm relaxing a bit and feeling a bit more positive. Yesterday his sugars did the best they've done in school yet. But, that's not why I'm feeling a little more upbeat. I'm feeling better because I'm focusing on the positives.
Not the positives of diabetes, mind you. I'm not quite there yet. There are no positives to diabetes. Period.
Riley's teacher got broken in really well the first week. One time she called and said Riley was drinking a lot of water and she tested him to make sure he wasn't high and he wasn't, but she just wanted to let me know. Or, another time, she called because while out on the playground Riley came up and told her his sugar felt low. When he tested, he was 171. She took him in the classroom and got him to test again and he was 163. She called me anyway because he said he felt low, but he wasn't. She called when he was high. She called when he was low. She told me when he went low she panicked because she felt like she wasn't reacting quickly enough. She wanted his sugar to hurry up and come up. I told her I felt the same way. She was doing all of this in addition to trying to teach a class of 5 year olds.
So, on Friday I sent a bouquet of flowers to school along with a thank you card for the wonderful job she had done with Riley all week. In it, I told her what a good job she had done. And, I thanked her for taking on the extra responsibility without ever complaining.
She sent me a thank you card back. Then, later that night I saw her at a football game. She came up to me and told me how much she enjoyed having Riley in her class. "He's such a trooper. He just does whatever he needs to do without complaining. And, he's so well-mannered. And, Holden, he's wonderful too. He's so patient with Riley and he's very patient with me as well. You have two wonderful boys there. You are truly blessed."
Blessed. Yes I am. Somehow I got caught up in the diabetes fog. I forgot what is really important.
I don't want other people to look at Riley and see a disease. I want them to look at him and see the cute, smart, somewhat sarcastic kid that he is. Ever since he was a little baby his smile could light up a room. We never had problems getting good pictures even when he was a tiny little thing. All you had to do was look at him and he burst into a huge grin.
And, Holden, he has always been my tenderhearted child. He can't stand to see someone in pain or to go without. He was the kid on the playground that knew which kid was always picked last to join in the games. When he got to pick, he'd pick that kid first just to make them feel better. He didn't care what other people said about it. And, one Christmas he wanted to buy a gift off of an angel tree for a kid who might not get anything for Christmas. I let him pick who to buy for and what to buy. He chose a little boy that wanted a bicycle.
"Holden, a bicycle costs a lot of money. (he was using his own money he had saved) Are you sure? Don't you want to pick someone else?"
"No, mom. Everybody needs a bicycle."
So, because of my child, there was a happy little boy that Christmas with a shiny red bicycle under the Christmas tree.
I've never had a bit of problem with him in school either. I've always had teachers comment on how nice and polite he is. Just yesterday a lady told me how much she enjoys working with Holden. "He is just so well-mannered. I would rather work with him than anyone else. He's so helpful. You don't see that much in a kid his age anymore."
Yes, I am blessed beyond belief. Diabetes is part of my little boy's life and so it is part of mine. But, it is only as big a part as I let it be.
God blessed me with two wonderful children. Sometimes I look at them and my heart feels like it is going to burst because I love them so much.
So what if my child has diabetes? He's still smart. He's still happy. And, just like his big brother, he cares about others.
For now, I'm putting diabetes in the background. No, I can't just forget about it. But, I can get it off of center stage. I may not have a whole lot of power over the lows and the highs, but I can at least chose how much I let it affect my emotions.
I am lucky to have the two boys that I do. I can live my life in fear from day to day of something happening to them. Or, I can enjoy that I have them in my life at all.
I chose the later.
It's all in how you look at it. And, I've been looking at it all wrong.
Some of you who read my blog regularly might find this hard to believe, but I am usually a very positive person. I don't tend to sweat the small stuff or the big stuff for that matter. I believe there is no reason to get worked up about something. If you can change the situation, then change it. And, if you can't, there is no reason to dwell on it, because you can't do anything about it anyway.
Sounds great doesn't it? It almost sounds easy. But, it's like diabetes is kryptonite to being positive for me. Sure, I have my moments where I think Riley will be OK. But, they are usually followed by a low, low or high, high which brings me back down to reality.
The other day my mom was asking why I thought Riley's sugar went so high. And, my answer was, "I don't know. Sometimes it just is what it is." It is. Sometimes you can do everything "right" and yet you still get crappy numbers. I guess that's what bothers me the most. I really have no control over what is happening with my child. Well, that's not true. OK, so I have minimal control.
Now that Riley is settled back into school I'm relaxing a bit and feeling a bit more positive. Yesterday his sugars did the best they've done in school yet. But, that's not why I'm feeling a little more upbeat. I'm feeling better because I'm focusing on the positives.
Not the positives of diabetes, mind you. I'm not quite there yet. There are no positives to diabetes. Period.
Riley's teacher got broken in really well the first week. One time she called and said Riley was drinking a lot of water and she tested him to make sure he wasn't high and he wasn't, but she just wanted to let me know. Or, another time, she called because while out on the playground Riley came up and told her his sugar felt low. When he tested, he was 171. She took him in the classroom and got him to test again and he was 163. She called me anyway because he said he felt low, but he wasn't. She called when he was high. She called when he was low. She told me when he went low she panicked because she felt like she wasn't reacting quickly enough. She wanted his sugar to hurry up and come up. I told her I felt the same way. She was doing all of this in addition to trying to teach a class of 5 year olds.
So, on Friday I sent a bouquet of flowers to school along with a thank you card for the wonderful job she had done with Riley all week. In it, I told her what a good job she had done. And, I thanked her for taking on the extra responsibility without ever complaining.
She sent me a thank you card back. Then, later that night I saw her at a football game. She came up to me and told me how much she enjoyed having Riley in her class. "He's such a trooper. He just does whatever he needs to do without complaining. And, he's so well-mannered. And, Holden, he's wonderful too. He's so patient with Riley and he's very patient with me as well. You have two wonderful boys there. You are truly blessed."
Blessed. Yes I am. Somehow I got caught up in the diabetes fog. I forgot what is really important.
I don't want other people to look at Riley and see a disease. I want them to look at him and see the cute, smart, somewhat sarcastic kid that he is. Ever since he was a little baby his smile could light up a room. We never had problems getting good pictures even when he was a tiny little thing. All you had to do was look at him and he burst into a huge grin.
And, Holden, he has always been my tenderhearted child. He can't stand to see someone in pain or to go without. He was the kid on the playground that knew which kid was always picked last to join in the games. When he got to pick, he'd pick that kid first just to make them feel better. He didn't care what other people said about it. And, one Christmas he wanted to buy a gift off of an angel tree for a kid who might not get anything for Christmas. I let him pick who to buy for and what to buy. He chose a little boy that wanted a bicycle.
"Holden, a bicycle costs a lot of money. (he was using his own money he had saved) Are you sure? Don't you want to pick someone else?"
"No, mom. Everybody needs a bicycle."
So, because of my child, there was a happy little boy that Christmas with a shiny red bicycle under the Christmas tree.
I've never had a bit of problem with him in school either. I've always had teachers comment on how nice and polite he is. Just yesterday a lady told me how much she enjoys working with Holden. "He is just so well-mannered. I would rather work with him than anyone else. He's so helpful. You don't see that much in a kid his age anymore."
Yes, I am blessed beyond belief. Diabetes is part of my little boy's life and so it is part of mine. But, it is only as big a part as I let it be.
God blessed me with two wonderful children. Sometimes I look at them and my heart feels like it is going to burst because I love them so much.
So what if my child has diabetes? He's still smart. He's still happy. And, just like his big brother, he cares about others.
For now, I'm putting diabetes in the background. No, I can't just forget about it. But, I can get it off of center stage. I may not have a whole lot of power over the lows and the highs, but I can at least chose how much I let it affect my emotions.
I am lucky to have the two boys that I do. I can live my life in fear from day to day of something happening to them. Or, I can enjoy that I have them in my life at all.
I chose the later.
Tuesday, September 04, 2007
Back to School
It was tough sending my little man back to school this morning. His sugars did much better over the weekend. They were pretty good except for Saturday evening when he went low and then went even lower. In fact, his sugars were low enough Saturday that his total daily dose of insulin was 7.1 units. That is compared to the 9+ units it is on other days.
I didn't do anything to his basals. I decided to stick it out for a little while and see if his body adjusts to school. I really think that's the issue. Riley was pretty much on a schedule before he started school. He's on a schedule now. But, it's a different schedule. He goes to bed earlier, gets up earlier, eats breakfast, morning snack, and lunch earlier. I guess it may take a while to get things back to our kind of normal. Plus, he has that extra excitement the newness of school brings. I'm hoping he'll get settled soon and so will his sugars.
Thank you all for your comments and kind suggestions. It helps to know that others out there have been through this and survived.
I didn't do anything to his basals. I decided to stick it out for a little while and see if his body adjusts to school. I really think that's the issue. Riley was pretty much on a schedule before he started school. He's on a schedule now. But, it's a different schedule. He goes to bed earlier, gets up earlier, eats breakfast, morning snack, and lunch earlier. I guess it may take a while to get things back to our kind of normal. Plus, he has that extra excitement the newness of school brings. I'm hoping he'll get settled soon and so will his sugars.
Thank you all for your comments and kind suggestions. It helps to know that others out there have been through this and survived.
Friday, August 31, 2007
Week One
Week one of school is over. And, to put it mildly, it's been hell.
Riley's sugars at school this week ranged from 52-360. His sugars while at home: 43-460.
Of course we've had lows before, even runs of lows. He might have a day here and there where he goes low a few times and we may have 2 or 3 days in a row where he goes low at least once a day. But, in the almost two years we've been dealing with this disease, we have never had a whole week where he went low at least once a day.
It's just so frustrating. I will be sitting down tonight and studying Riley's logbook. If I can't come to a conclusion on my own, I'll be faxing sugars to his endo and asking for help.
The lows are scary. Really scary. And, they make Riley feel like crap. That's what I hate the most.
But, on the bright side, Riley has thoroughly enjoyed every single day at school. He loves recess and PE and Spanish. He went to library today and checked out a book and he can't wait for me to read it to him.
It does give me some comfort that Riley is having a good time despite his diabetes. And, hearing him ramble on about what he did during the day and who got a mark on the board for bad behavior, is great.
But, in the quiet of night, I watch him sleep and my eyes fill with tears. My brave little man has no idea how much more he has to face than the other kids in his class every single day. He has no idea the fear that the lows he's had lately put in my heart. He has no idea what these fluctuations are doing to his body.
And, I want to keep it that way for as long as I can. I'll bear that burden for now. If only I could bear the rest for him too.
Riley's sugars at school this week ranged from 52-360. His sugars while at home: 43-460.
Of course we've had lows before, even runs of lows. He might have a day here and there where he goes low a few times and we may have 2 or 3 days in a row where he goes low at least once a day. But, in the almost two years we've been dealing with this disease, we have never had a whole week where he went low at least once a day.
It's just so frustrating. I will be sitting down tonight and studying Riley's logbook. If I can't come to a conclusion on my own, I'll be faxing sugars to his endo and asking for help.
The lows are scary. Really scary. And, they make Riley feel like crap. That's what I hate the most.
But, on the bright side, Riley has thoroughly enjoyed every single day at school. He loves recess and PE and Spanish. He went to library today and checked out a book and he can't wait for me to read it to him.
It does give me some comfort that Riley is having a good time despite his diabetes. And, hearing him ramble on about what he did during the day and who got a mark on the board for bad behavior, is great.
But, in the quiet of night, I watch him sleep and my eyes fill with tears. My brave little man has no idea how much more he has to face than the other kids in his class every single day. He has no idea the fear that the lows he's had lately put in my heart. He has no idea what these fluctuations are doing to his body.
And, I want to keep it that way for as long as I can. I'll bear that burden for now. If only I could bear the rest for him too.
Wednesday, August 29, 2007
It's driving me crazy...(er than I already am)
Riley's had quite a few lows lately. I'm talking 40s and 50s. They started on Friday. We went to a football game and he played in the playground the whole time (with a decreased basal), he started running low after that, but I thought I just didn't decrease his basal enough.
I've increased his insulin sensitivity factor. I've decreased his basals and yet he's still going low. I'm even subtracting insulin from pretty much every single bolus he's getting. It is really driving me crazy. I hate the low, lows as much as the high, highs.
When I got home yesterday he was asleep on the couch. I woke him up because I knew if he got too much of a nap in it would be harder to get him to go to bed on time. As soon as his eyes opened he said, "My sugar feels low." It was 43. What if I hadn't woken him up? I don't even want to think about it.
He ran high pretty much all through the night. I chalked that up to rebounding.
Then, at 2:15 today his teacher called to tell me his sugar was 60. 15 minutes later he was 85. I said he'd be OK until he got home.
When he got to my mom's he was 151 and he had a snack.
My mom just called and now he's fifty-freaking-nine again!!!!
It's just so frustrating. So very, very frustrating. His total daily dose of insulin has decreased from 10 units to 9 units over the last week.
I decreased his basals on Saturday and again yesterday. What in the heck else can I do? I don't want to decrease them too much and make him high all the time either.
Have any of you dealt with this before? Any advice? I'm at my wits end. (and my wit wasn't very long to begin with)
I've increased his insulin sensitivity factor. I've decreased his basals and yet he's still going low. I'm even subtracting insulin from pretty much every single bolus he's getting. It is really driving me crazy. I hate the low, lows as much as the high, highs.
When I got home yesterday he was asleep on the couch. I woke him up because I knew if he got too much of a nap in it would be harder to get him to go to bed on time. As soon as his eyes opened he said, "My sugar feels low." It was 43. What if I hadn't woken him up? I don't even want to think about it.
He ran high pretty much all through the night. I chalked that up to rebounding.
Then, at 2:15 today his teacher called to tell me his sugar was 60. 15 minutes later he was 85. I said he'd be OK until he got home.
When he got to my mom's he was 151 and he had a snack.
My mom just called and now he's fifty-freaking-nine again!!!!
It's just so frustrating. So very, very frustrating. His total daily dose of insulin has decreased from 10 units to 9 units over the last week.
I decreased his basals on Saturday and again yesterday. What in the heck else can I do? I don't want to decrease them too much and make him high all the time either.
Have any of you dealt with this before? Any advice? I'm at my wits end. (and my wit wasn't very long to begin with)
Day 2
Day 2 at school went better than Day 1. Riley started yesterday morning with an 89 before breakfast. And, yesterday, I actually remembered to bolus him for breakfast. But, I still screwed up a little (more on that later).
His snack time sugar (2 hours after his breakfast bolus) was 247. Not great, but not 360 either. The pump suggested to give him 1.20 units. This seemed awfully high to me again, so I told Holden to give .90.
He didn't go low at recess. And, at lunch his sugar was 102.
He was so excited when he got home. He went to Spanish class yesterday. He just loved the Spanish teacher. Holden has the same teacher for Spanish too and he is one of Holden's favorite teachers. I also got to hear about how T got 2 marks beside his name because he wouldn't be quiet and listen. The same boy got in trouble the day before for running up the slide the wrong way.
All in all school went rather well yesterday. He was ready to go back this morning, so things must be going well.
When I gave him his breakfast bolus this morning ( I know, 2 days in a row. What can I say?) I noticed that something was wrong. I don't know why I didn't notice it yesterday.
Riley's carb coverage at breakfast is the highest it is all day, 1:28. But, his pump was set to start the 1:28 at 8 AM. During the middle of the night his carb coverage was 1:40. So, since he's eating breakfast earlier now the pump was showing what to give for 1:40 coverage. I changed the setting so that it's 1:28 again. Hopefully, that will help with this snack time sugar today.
I changed all of his basals Sunday night, taking into account that he's going to bed earlier and eating breakfast earlier. Now, he even has a weekday basal rate and a weekend basal rate. But, I didn't think about changing the time on his carb coverage.
And, another thing to add to my list for nomination for mom of the year, I forgot to send Riley's machine to school this morning. I know a lot of people have a machine at school and a machine at home. But, I chose to just send his machine back and forth. That way I know what his sugars are doing every day. I don't want to wait until Fridays to find out how his sugars have been all week.
Today was also a site change day. Riley tends to go low after site changes. That's why I decrease his basal 60% for 3.5 hours after a site change. It helps, but he still has a low sometimes. I even decrease the amount of his breakfast bolus too.
After I changed Riley's site this morning, he turned to me and said, "You know this means I'm probably going to go low don't you?" It still angers me that he has to know things like that.
I should be getting his snack time sugar called to me any minute now. Then, I'll see how day 3 is going sugar-wise. But, Riley-wise I know things are fine. He's enjoying school and I'm so glad that he is.
Holden just called and his snack time sugar was 261. Ugh.
His snack time sugar (2 hours after his breakfast bolus) was 247. Not great, but not 360 either. The pump suggested to give him 1.20 units. This seemed awfully high to me again, so I told Holden to give .90.
He didn't go low at recess. And, at lunch his sugar was 102.
He was so excited when he got home. He went to Spanish class yesterday. He just loved the Spanish teacher. Holden has the same teacher for Spanish too and he is one of Holden's favorite teachers. I also got to hear about how T got 2 marks beside his name because he wouldn't be quiet and listen. The same boy got in trouble the day before for running up the slide the wrong way.
All in all school went rather well yesterday. He was ready to go back this morning, so things must be going well.
When I gave him his breakfast bolus this morning ( I know, 2 days in a row. What can I say?) I noticed that something was wrong. I don't know why I didn't notice it yesterday.
Riley's carb coverage at breakfast is the highest it is all day, 1:28. But, his pump was set to start the 1:28 at 8 AM. During the middle of the night his carb coverage was 1:40. So, since he's eating breakfast earlier now the pump was showing what to give for 1:40 coverage. I changed the setting so that it's 1:28 again. Hopefully, that will help with this snack time sugar today.
I changed all of his basals Sunday night, taking into account that he's going to bed earlier and eating breakfast earlier. Now, he even has a weekday basal rate and a weekend basal rate. But, I didn't think about changing the time on his carb coverage.
And, another thing to add to my list for nomination for mom of the year, I forgot to send Riley's machine to school this morning. I know a lot of people have a machine at school and a machine at home. But, I chose to just send his machine back and forth. That way I know what his sugars are doing every day. I don't want to wait until Fridays to find out how his sugars have been all week.
Today was also a site change day. Riley tends to go low after site changes. That's why I decrease his basal 60% for 3.5 hours after a site change. It helps, but he still has a low sometimes. I even decrease the amount of his breakfast bolus too.
After I changed Riley's site this morning, he turned to me and said, "You know this means I'm probably going to go low don't you?" It still angers me that he has to know things like that.
I should be getting his snack time sugar called to me any minute now. Then, I'll see how day 3 is going sugar-wise. But, Riley-wise I know things are fine. He's enjoying school and I'm so glad that he is.
Holden just called and his snack time sugar was 261. Ugh.
Monday, August 27, 2007
The first day
Riley's first day had some ups and some downs, literally. His teacher certainly got broken in well on the very first day. I kind of felt sorry for her at one point. She didn't sign up for this when she became a teacher. But, I didn't sign up for it when I became a mom nor did Riley sign up for this when he came into the world. We were all drafted against our will.
Holden called me at around 9:40 AM. It was Riley's snack time and his sugar was 360. Holden had plugged all the numbers in the pump and it suggested a bolus of 1.65 for the sugar and Riley's snack. Thinking this sounded kind of high I asked how much insulin Riley had on board. "None," was his reply.
Being that Riley had just been bolused about 2 hours earlier for breakfast, he should of had some insulin lingering around. And, then it hit me, "I don't remember giving him any insulin this morning." I unhooked his pump to check the line for bubbles, I reconnected him, then, I stuck his pump in his pocket. I never bolused for his cereal.
I really started my child's first day of school off with a bang. I have never forgotten to give him insulin before. I picked the perfect day to do it, didn't I?
I debated about not telling you guys about my screw up, but decided, what the heck? Everyone screws up and I screwed up royally. Maybe this will help some other parent out there to feel better about themselves.
"Well, even though my kid has diabetes, I , at least, don't forget to give them insulin like that poor dumb mother." Hey, I'm glad I could be of help.
Riley has been having some lows lately (but, that's a whole other post), so I told Holden instead of giving 1.65 to give 1.20 units instead.
A little later my mom called to check on Riley. I told her the scoop and she asked when they would check him next. I told her I assumed it would be at lunchtime.
An hour later my cell phone rang, "Hi, Penny, this is Mrs. W, I just called to let you know Riley is OK. I had him check his sugar and it's come down to 218. I'm glad you gave me that timer or I would have forgotten to get him to test again." (When I spoke with his teacher last week I gave her a kitchen timer to use to set after Riley went low to remind her to test again in 15 minutes to see if he'd come up.)
I also instructed her that if he got insulin for a high sugar I wanted him to test again in an hour to make sure it was coming down. But, somehow, I don't know why, I didn't really expect her to do it. But, she did. Riley's sugar had come down a little too much for my taste, but I knew he'd be eating and testing again in a little over an hour, so I hoped he'd be OK.
An hour later my cell phone rang again, "Hi, this is Mrs. W again. I'm so sorry to bother you."
"You're not bothering me at all."
"Well, we were outside on the playground and Riley came up to me and said his sugar felt low and it's 59. We're going to eat lunch in about 20 minutes. Do you just want me to give him a juice box?"
"Yes, give him a juice box and have him check again in 15 minutes to be sure it's coming up."
I had visions of my child sitting on a bench sipping juice while all the other kids ran and played. It broke my heart. I cried the hardest last night when I thought about that happening. And, now, it had happened on the very first day.
About 30 minutes later Holden called me back. Riley's sugar was 125 and he had eaten his lunch. The pump suggested 0.85 units. Not wanting him to go low again, I told him to give 0.70 units.
The rest of the school day went off without a hitch. His snack time sugar after school was 208. Then, he dipped down to 69 at supper. (See what I mean about the lows.)
When I picked Riley up from school yesterday he met me with a big grin on his face. When asked what his favorite part was he , of course, said recess. (Even though he went low while at recess.)
I asked him if when he went low he had to stop playing. He said, "No."
"What? You kept playing?"
"No, but no one else did either. All of us came in at the same time."
So, my vision of him sipping juice while everyone else played was all wrong.
As far as Riley was concerned he had an awesome first day of school. And, at the end of the day, I know that's what really matters is his perception of how things went.
When I woke him this morning I said, "You've got to get up so you can go to school," a huge grin spread across his face again.
He's ready for another day and so am I.
(P.S. First day of school pictures will be forthcoming. Hopefully I will get a new modem today and I can actually post from home.)
Holden called me at around 9:40 AM. It was Riley's snack time and his sugar was 360. Holden had plugged all the numbers in the pump and it suggested a bolus of 1.65 for the sugar and Riley's snack. Thinking this sounded kind of high I asked how much insulin Riley had on board. "None," was his reply.
Being that Riley had just been bolused about 2 hours earlier for breakfast, he should of had some insulin lingering around. And, then it hit me, "I don't remember giving him any insulin this morning." I unhooked his pump to check the line for bubbles, I reconnected him, then, I stuck his pump in his pocket. I never bolused for his cereal.
I really started my child's first day of school off with a bang. I have never forgotten to give him insulin before. I picked the perfect day to do it, didn't I?
I debated about not telling you guys about my screw up, but decided, what the heck? Everyone screws up and I screwed up royally. Maybe this will help some other parent out there to feel better about themselves.
"Well, even though my kid has diabetes, I , at least, don't forget to give them insulin like that poor dumb mother." Hey, I'm glad I could be of help.
Riley has been having some lows lately (but, that's a whole other post), so I told Holden instead of giving 1.65 to give 1.20 units instead.
A little later my mom called to check on Riley. I told her the scoop and she asked when they would check him next. I told her I assumed it would be at lunchtime.
An hour later my cell phone rang, "Hi, Penny, this is Mrs. W, I just called to let you know Riley is OK. I had him check his sugar and it's come down to 218. I'm glad you gave me that timer or I would have forgotten to get him to test again." (When I spoke with his teacher last week I gave her a kitchen timer to use to set after Riley went low to remind her to test again in 15 minutes to see if he'd come up.)
I also instructed her that if he got insulin for a high sugar I wanted him to test again in an hour to make sure it was coming down. But, somehow, I don't know why, I didn't really expect her to do it. But, she did. Riley's sugar had come down a little too much for my taste, but I knew he'd be eating and testing again in a little over an hour, so I hoped he'd be OK.
An hour later my cell phone rang again, "Hi, this is Mrs. W again. I'm so sorry to bother you."
"You're not bothering me at all."
"Well, we were outside on the playground and Riley came up to me and said his sugar felt low and it's 59. We're going to eat lunch in about 20 minutes. Do you just want me to give him a juice box?"
"Yes, give him a juice box and have him check again in 15 minutes to be sure it's coming up."
I had visions of my child sitting on a bench sipping juice while all the other kids ran and played. It broke my heart. I cried the hardest last night when I thought about that happening. And, now, it had happened on the very first day.
About 30 minutes later Holden called me back. Riley's sugar was 125 and he had eaten his lunch. The pump suggested 0.85 units. Not wanting him to go low again, I told him to give 0.70 units.
The rest of the school day went off without a hitch. His snack time sugar after school was 208. Then, he dipped down to 69 at supper. (See what I mean about the lows.)
When I picked Riley up from school yesterday he met me with a big grin on his face. When asked what his favorite part was he , of course, said recess. (Even though he went low while at recess.)
I asked him if when he went low he had to stop playing. He said, "No."
"What? You kept playing?"
"No, but no one else did either. All of us came in at the same time."
So, my vision of him sipping juice while everyone else played was all wrong.
As far as Riley was concerned he had an awesome first day of school. And, at the end of the day, I know that's what really matters is his perception of how things went.
When I woke him this morning I said, "You've got to get up so you can go to school," a huge grin spread across his face again.
He's ready for another day and so am I.
(P.S. First day of school pictures will be forthcoming. Hopefully I will get a new modem today and I can actually post from home.)
He's at school
Well, Riley's at school and, somehow, the world didn't end.
It's been a rough weekend. My internet modem was fried by lightening, so I wasn't able to blog all weekend, which is probably a good thing for you. My posts wouldn't have been pretty.
It all started on Friday. The school that Riley attends celebrates Gingerbread Day every year. It's a time for the kindergartners to come to school with their parents to see their classroom and meet the teacher. They read the story of the gingerbread man and then eat gingerbread cookies.
I was so nervous that morning that I was literally shaking. I felt like I was going to be sick on my stomach and I wasn't even leaving Riley there, I would be with him the whole time. I could only imagine how I'd be when I had to leave him there.
I knew he would be eating gingerbread cookies, so I'd gone to Calorie King to see if I could figure out the carb count. But, it wasn't very helpful because it really depended on how big the cookie was. So, I had absolutely no idea how to count carbs for this cookie.
When we walked in the door, the teacher, Mrs. W, exclaimed "Hi there Riley!!" then she leaned over and whispered in my ear, "The gingerbread cookies came in a box. They are 14g of carbohydrates a piece." That was music to my ears. She was already looking out for my boy.
Riley thoroughly enjoyed himself and got to meet his classmates for the year.
I did just fine on Saturday. I was a little on edge, but I did OK most of the day.
Sunday is when things went really awry.
It all started going down hill at church, of all places. My pastor's wife gathered all the kids that are in school and read them a book called "The Kissing Hand". It is about a little raccoon going to school for the first time and he doesn't want to go. So, his mom tells him to open his hand and gives him a kiss in the palm. She tells him that anytime he feels scared or alone at school to press his hand to his cheek and it will be like getting a kiss from his mom. While she's reading a tear or two slipped down my cheek, but it wasn't too bad.
At the end of the book the little raccoon and his mom are standing in front of the school. The little raccoon turns to his mom, opens her hand, and kisses her palm too. The tears increased a little.
Then, our pastor prayed. And, as he prayed for God to watch over the children and keep them safe at school it's like a flood gate opened and the tears started to pour. I was holding back sobs. As soon as the prayer ended I quickly got up and went outside before Riley got back to his seat and saw me crying.
I stayed outside a few minutes and got myself straight. I felt so stupid for crying. I didn't cry when Holden started school. But, with Riley, I was terrified that something bad will happen. I kept having visions of him passing out at school and no one noticing.
We went to the beach after church and Riley had a great time. He was still very excited about starting school the next day.
Once we got home from the beach the reality of the next day set in. I became very quiet. I couldn't seem to keep a thought in my head. Riley went to bed (after a few tears). He's never had to go to bed early and he wasn't happy to be starting that.
I decided I should try to get some sleep. I knew I probably wouldn't sleep well, if at all, but I knew I might as well try. Once I got to bed I couldn't get the image out of my head of Riley checking his sugar at school on Friday. It was very painful for me to watch my child prick his finger while all the other kids were already devouring their cookies.
And, then, I cried like I haven't cried since he was diagnosed. I cried and I prayed. And, in between the two I talked to Michael, who, bless his heart, had to get up at 5:30 AM and probably just wanted his silly wife to be quiet so he could go to sleep.
At first, I talked about being scared that something bad would happen to Riley. But, I didn't linger there long. As I kept talking I realized what really was the matter.
I was mad, very mad, at diabetes. Michael said, "I just look at it this way, Riley is going to be a stronger person because of this." I've said that same thing before. But, last night, I wasn't having any of it.
I told Michael that that's just a nice way of saying someone has to go through a lot of crap. You only get stronger because of bad things, not good things. And, no mother wants anything bad to happen to her children.
I began to rant about how unfair it was that he had to check his sugar before he eats and how unfair it is that he's hooked to a machine 24/7, and the unfairness of having to sit out at PE or recess when his sugar is too low.
It sucks and it pissed me off. Instead of tears of pain, I cried hot tears of anger. I hated diabetes and everything that came along with it.
At around midnight I finally became tired and after checking Riley's sugar, I fell asleep. And, I slept pretty well. Other than the usual nighttime checks I slept all night.
This morning I went in to wake Riley. When he rolled over in bed I whispered, "Do you know what today is?"
With his eyes still closed and a huge grin on his face he said, "My first day of school."
He got up, had breakfast, brushed his teeth and was ready to go.
He walked into school with his head held high, not a bit of trepidation in his steps. He sat down at this desk and began to color the picture of a school bus that the teacher had put there.
We hadn't been there 2 minutes when he turned to me and said, "Aren't you going to leave now?" I told him I needed to speak to Mrs. W first and then I'd leave.
I went to speak to her one more time about checking Riley's sugars and getting Holden out of class to give his insulin. And, I gave her some juice boxes to use for lows.
Then, I stood back and watched my little boy color like he didn't have a care in the world. When I stepped closer Riley looked at me and said, "OK, now that you've talked to Mrs. W, are you going to leave?"
It was just his way of telling me that he was going to be fine.
And, I know that he is.
It's been a rough weekend. My internet modem was fried by lightening, so I wasn't able to blog all weekend, which is probably a good thing for you. My posts wouldn't have been pretty.
It all started on Friday. The school that Riley attends celebrates Gingerbread Day every year. It's a time for the kindergartners to come to school with their parents to see their classroom and meet the teacher. They read the story of the gingerbread man and then eat gingerbread cookies.
I was so nervous that morning that I was literally shaking. I felt like I was going to be sick on my stomach and I wasn't even leaving Riley there, I would be with him the whole time. I could only imagine how I'd be when I had to leave him there.
I knew he would be eating gingerbread cookies, so I'd gone to Calorie King to see if I could figure out the carb count. But, it wasn't very helpful because it really depended on how big the cookie was. So, I had absolutely no idea how to count carbs for this cookie.
When we walked in the door, the teacher, Mrs. W, exclaimed "Hi there Riley!!" then she leaned over and whispered in my ear, "The gingerbread cookies came in a box. They are 14g of carbohydrates a piece." That was music to my ears. She was already looking out for my boy.
Riley thoroughly enjoyed himself and got to meet his classmates for the year.
I did just fine on Saturday. I was a little on edge, but I did OK most of the day.
Sunday is when things went really awry.
It all started going down hill at church, of all places. My pastor's wife gathered all the kids that are in school and read them a book called "The Kissing Hand". It is about a little raccoon going to school for the first time and he doesn't want to go. So, his mom tells him to open his hand and gives him a kiss in the palm. She tells him that anytime he feels scared or alone at school to press his hand to his cheek and it will be like getting a kiss from his mom. While she's reading a tear or two slipped down my cheek, but it wasn't too bad.
At the end of the book the little raccoon and his mom are standing in front of the school. The little raccoon turns to his mom, opens her hand, and kisses her palm too. The tears increased a little.
Then, our pastor prayed. And, as he prayed for God to watch over the children and keep them safe at school it's like a flood gate opened and the tears started to pour. I was holding back sobs. As soon as the prayer ended I quickly got up and went outside before Riley got back to his seat and saw me crying.
I stayed outside a few minutes and got myself straight. I felt so stupid for crying. I didn't cry when Holden started school. But, with Riley, I was terrified that something bad will happen. I kept having visions of him passing out at school and no one noticing.
We went to the beach after church and Riley had a great time. He was still very excited about starting school the next day.
Once we got home from the beach the reality of the next day set in. I became very quiet. I couldn't seem to keep a thought in my head. Riley went to bed (after a few tears). He's never had to go to bed early and he wasn't happy to be starting that.
I decided I should try to get some sleep. I knew I probably wouldn't sleep well, if at all, but I knew I might as well try. Once I got to bed I couldn't get the image out of my head of Riley checking his sugar at school on Friday. It was very painful for me to watch my child prick his finger while all the other kids were already devouring their cookies.
And, then, I cried like I haven't cried since he was diagnosed. I cried and I prayed. And, in between the two I talked to Michael, who, bless his heart, had to get up at 5:30 AM and probably just wanted his silly wife to be quiet so he could go to sleep.
At first, I talked about being scared that something bad would happen to Riley. But, I didn't linger there long. As I kept talking I realized what really was the matter.
I was mad, very mad, at diabetes. Michael said, "I just look at it this way, Riley is going to be a stronger person because of this." I've said that same thing before. But, last night, I wasn't having any of it.
I told Michael that that's just a nice way of saying someone has to go through a lot of crap. You only get stronger because of bad things, not good things. And, no mother wants anything bad to happen to her children.
I began to rant about how unfair it was that he had to check his sugar before he eats and how unfair it is that he's hooked to a machine 24/7, and the unfairness of having to sit out at PE or recess when his sugar is too low.
It sucks and it pissed me off. Instead of tears of pain, I cried hot tears of anger. I hated diabetes and everything that came along with it.
At around midnight I finally became tired and after checking Riley's sugar, I fell asleep. And, I slept pretty well. Other than the usual nighttime checks I slept all night.
This morning I went in to wake Riley. When he rolled over in bed I whispered, "Do you know what today is?"
With his eyes still closed and a huge grin on his face he said, "My first day of school."
He got up, had breakfast, brushed his teeth and was ready to go.
He walked into school with his head held high, not a bit of trepidation in his steps. He sat down at this desk and began to color the picture of a school bus that the teacher had put there.
We hadn't been there 2 minutes when he turned to me and said, "Aren't you going to leave now?" I told him I needed to speak to Mrs. W first and then I'd leave.
I went to speak to her one more time about checking Riley's sugars and getting Holden out of class to give his insulin. And, I gave her some juice boxes to use for lows.
Then, I stood back and watched my little boy color like he didn't have a care in the world. When I stepped closer Riley looked at me and said, "OK, now that you've talked to Mrs. W, are you going to leave?"
It was just his way of telling me that he was going to be fine.
And, I know that he is.
Thursday, August 23, 2007
They are always there
Sometimes I have great days, days where diabetes is way back in the background of life. It's still there, it's just not center stage. There are days when I don't really think about diabetes all that much. There are days that even if I do think about it, I think "Oh, it's OK. Riley is going to be fine."
I really love those days.
But, then there are times, like today, that diabetes weighs heavily on my heart. It feels like the weight of it is dragging me down into an abyss that I can't escape.
There's a lot going on right now. Obviously, Riley starting school has me on edge. It forces me to think about the logistics of diabetes more than I really want to. I have to think about a plan for if Riley goes low a school. A plan for if Riley's set comes out at school. And, a plan for if, God forbid, Riley goes too low and has a seizure while at school. These are things I can usually keep tucked in the back of my mind. Bringing them to the forefront is quite painful.
Also, I am raising money for Walk of Hope. Raising money puts a strain on me because I have to think about diabetes and why it is so very important to find a cure.
When you convey to people why you want a cure it's not as simple as not wanting your child to be hooked to a medical device or wanting your child to be able to eat whatever he wants. There is so much more. This is a 24/7 disease. There are no holidays. There are no breaks, not even for one second.
There are worries that other parents will never have. There are worries that Riley will deal with that others will never have to experience.
There are the mornings, like this one, when I change Riley's set and he screams bloody murder and clings to me for comfort, a comfort that I just cannot give. I can't take away the sting of the needle anymore then I can take away this disease.
Of course, there's the complications looming over my head too. Riley's sugars have been pretty good lately. But, for the last two nights, he's run high all night long no matter how much we correct him. Last night he reached 403. We haven't seen the 400s in a while.
But, when he goes through those highs, even though I know we'll eventually get them straightened out, I can't help but have in the back of my mind what they are doing to his eyes, his kidneys, his heart.
Lately, I've been forced to think about things that I really don't want to think about, the bad things.
And, I've come to the realization that even on those good days when I don't think about the bad things, they are still there. Whether I think about them or not doesn't change the fact that they exist.
And, that is another reason why my heart is heavy this morning and, to some extent, always will be.
I really love those days.
But, then there are times, like today, that diabetes weighs heavily on my heart. It feels like the weight of it is dragging me down into an abyss that I can't escape.
There's a lot going on right now. Obviously, Riley starting school has me on edge. It forces me to think about the logistics of diabetes more than I really want to. I have to think about a plan for if Riley goes low a school. A plan for if Riley's set comes out at school. And, a plan for if, God forbid, Riley goes too low and has a seizure while at school. These are things I can usually keep tucked in the back of my mind. Bringing them to the forefront is quite painful.
Also, I am raising money for Walk of Hope. Raising money puts a strain on me because I have to think about diabetes and why it is so very important to find a cure.
When you convey to people why you want a cure it's not as simple as not wanting your child to be hooked to a medical device or wanting your child to be able to eat whatever he wants. There is so much more. This is a 24/7 disease. There are no holidays. There are no breaks, not even for one second.
There are worries that other parents will never have. There are worries that Riley will deal with that others will never have to experience.
There are the mornings, like this one, when I change Riley's set and he screams bloody murder and clings to me for comfort, a comfort that I just cannot give. I can't take away the sting of the needle anymore then I can take away this disease.
Of course, there's the complications looming over my head too. Riley's sugars have been pretty good lately. But, for the last two nights, he's run high all night long no matter how much we correct him. Last night he reached 403. We haven't seen the 400s in a while.
But, when he goes through those highs, even though I know we'll eventually get them straightened out, I can't help but have in the back of my mind what they are doing to his eyes, his kidneys, his heart.
Lately, I've been forced to think about things that I really don't want to think about, the bad things.
And, I've come to the realization that even on those good days when I don't think about the bad things, they are still there. Whether I think about them or not doesn't change the fact that they exist.
And, that is another reason why my heart is heavy this morning and, to some extent, always will be.
Tuesday, August 21, 2007
The meeting
The meeting went well. The teacher was very receptive and didn't seem to get uneasy until I started talking about Glucagon. I told her chances are that Riley will never have to use it, but I want her to know how to use it if the need arises.
I sat there and reviewed the book with her. She didn't have a lot of questions. But, when I mentioned that if he is low at recess that he needs to wait for his sugar to rise above 90 before playing, she said "Well, what if I get him to check his sugar before recess?" Ah, music to my ears. I told her that for the first few weeks until I get his insulin figured out it might not be a bad idea.
I'm ready, I think. I might as well be. Riley starts school on Monday and he will be in someone else's care. I can't change that. All I can do is focus on the positives.
He will be fine. My head knows that. I just have to convince my heart to get on board.
It will come. I know the first few weeks will be the most challenging. Once Riley gets in a routine and I get his insulin needs figured out things will be better.
I believe in angels and I know that my special little man must have and equally special angel. (Not to mention an awesome big brother that will be there with him too.)
I haven't cried yet. I don't know if I will.
I'm just going to take things one day at a time.
I sat there and reviewed the book with her. She didn't have a lot of questions. But, when I mentioned that if he is low at recess that he needs to wait for his sugar to rise above 90 before playing, she said "Well, what if I get him to check his sugar before recess?" Ah, music to my ears. I told her that for the first few weeks until I get his insulin figured out it might not be a bad idea.
I'm ready, I think. I might as well be. Riley starts school on Monday and he will be in someone else's care. I can't change that. All I can do is focus on the positives.
He will be fine. My head knows that. I just have to convince my heart to get on board.
It will come. I know the first few weeks will be the most challenging. Once Riley gets in a routine and I get his insulin needs figured out things will be better.
I believe in angels and I know that my special little man must have and equally special angel. (Not to mention an awesome big brother that will be there with him too.)
I haven't cried yet. I don't know if I will.
I'm just going to take things one day at a time.
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