Yesterday was Little Man's endo appointment. While, I admit, most of the time we were actually sitting in the office (after the urine sample and A1C finger stick, and downloading his pump info), the appointment consisted of just chit chat... we also got some awesome news!
His A1C results back in January were 7.9.
This time they were....
(drum roll please......)
7.2!!
Oh yeah! Take that diabetes!
I got so excited, I had a permanent smile on my face for a good 3 hours (tried desperately to spare the nurse my embarrassing "chair dancing" skills lol!)
Little Man sat on the little bed in the room, looking back at me and the nurse, asking, "What does that mean? Is that good?"
I looked at him and said, "That's very good!" and gave him a high five for all the hard work he's done trying to learn everything and manage things. The nurse told him "Yes, it is very good! Its like, if this was a test in school, you'd get 100%!"
Its funny she put it that way too, because, while we were waiting in the hall to see if she was going to send us out to the waiting room till a room opened up for us, or send us straight back, I was telling the nurse that was doing the finger stick for his A1C that "I always get a little nervous for these appointments, waiting for the A1C results. Its like, its our report card!"
The really exciting thing about his A1C result is... It's the lowest we've ever had it since he was diagnosed 3 1/2 years ago! January's was the highest it's ever been, too.
What's the lowest A1C result you've had?
What's the highest?
Showing posts with label Personal blogging. Show all posts
Showing posts with label Personal blogging. Show all posts
Wednesday, April 25, 2012
Tuesday, April 5, 2011
Heart
I wanted to share with you all something he did this weekend.
You see, every weekend, he stays with my inlaws.
He loves going to their house, playing the Wii (and kicking "G" and Pap's tail at Wii Bowling! LOL!), and growing wonderful crops like corn, peppers, tomatoes, peas, beans, squash, etc etc.
Anyway. He came home from G and Pap's house Sunday night while I was napping. When I woke up, my husband informed me that Lenny had something to show me.
Then, I was told the story behind it. (Prepare yourselves, mama's! I'm sure many of you will find it to be a tear-jerker as I have! LOL!)
My husband filled me in on the story.(Paraphrasing the story as I can't describe it the same way it was told, but you'll get the hint!) He said, Lenny was messing with one of the piggy banks he has at my inlaws house. Then, appearently, he told my inlaws that he wanted to take the money out of the piggy bank, and put that money toward a cure.
My baby boy. He didn't want to spend the money on a toy, or video game. He wanted to give the money he's saved to The Cure.
He wants a cure so badly he can taste it.
He is such a great Diabetes Advocate. Always willing to talk to anyone, even strangers, about his diabetes. I've never heard him talk about it to others in a negative light, but, you can tell he wants people to know about it, know he has it, and know he wants a cure.
You may remember a previous post I made back in February about a talk we had with Lenny about the Tooth Fairy. The one where he asked if he could donate the money that the Tooth Fairy gives him for losing his teeth, to the cure.
Conversations like these happen all over the world. In thousands of families homes. With children as young, and even younger, as well as older.
Children and adults living with this condition pray for a cure every day of their lives.
While, they do learn to cope, manage, and live a happy and healthy life, they still, deep down, wish they never had this disease.
Families like ours do everything they can to help make their child's dreams a reality.
This is what these kids want the most.
A Cure.
Will you help us help these kids?
Saturday, March 26, 2011
Why We Do It
Along the same note of my post yesterday, "Why I Blog".. Wendy at Candy Hearts shared this video on a facebook group we are in together. I loved it so much, I just wanted to share it with you all.
Giving credit where credit is due:
The creator of this awesome video is Shamae at "Our Crazy, Happy Life".
Giving credit where credit is due:
The creator of this awesome video is Shamae at "Our Crazy, Happy Life".
Friday, March 25, 2011
Why I Blog
She tagged me in her meme, essentially asking me why I blog.
Since I have two blogs, this one, and Mama Gardener, I will blog on both blogs my "why" for blogging.
For Sugar Free Candyland, my reason for blogging is simple. To educate, advocate, help, learn, and theraputic reasons.
Educate:
I use this blog to hopefully educate others about the truth about Type 1 Diabetes, the differences between Type 1, Type 2, Pre-Diabetes, MODY, Gestational Diabetes, and any other forms of diabetes that I learn about that others may not know about.
Although Type 1 Diabetes is relatively common in our country, with an estimated 1 in every 400 children are living with Type 1 Diabetes according to the American Diabetes Association. That said, despite the fact that it is relatively common, a large portion of the general population does not understand what Type 1 Diabetes is, how it differs from Type 2, etc, etc, etc.
I have had family members, friends, and even strangers come up to me and ask me "will he outgrow it?", "Did he get it because you let him eat too much sugar?", and make comments like "I thought he couldn't eat cake and ice cream because of his diabetes".
The wonderful media in this country doesn't help matters either. Countless celebrities go on national television, whether it's to promote a new product or service they are offering, or whatever the case may be, and talk about "juvenile diabetes" in the most incorrect ways... making statements like "Obesity causes Juvenile Diabetes".. then it is up to us, the parents of these children with Type 1 (Juvenile) Diabetes, to gather all our resources, and strength, to not only educate the said celebrities on the truth about what Juvenile Diabetes really is... the fact that it is an auto-immune disease and not caused by "obesity", and what our children really go through every day of their lives.. to set the record straight. Granted, most times, said celebrities will go back on the air to make a formal public apology and correct their previous statements... however, in my mind, the damage is already done. Who's to say that everyone who read, saw, listened to their first statements, have also read, heard, saw, their follow-up apologetic, correction statements? Those who do not see those follow-up statements still go through life believing the miscommunicated, misconceptions that they heard earlier in the day... earlier in the week. These type of "oopsie's" set all us Diabetes Advocates back several steps in our efforts to educate and advocate for our children and loved ones living with Type 1. It makes our job, our passion, that much harder.
This is why I blog here on Sugar Free Candyland. To educate others about the truth about Type 1 Diabetes. If I reach even just one other person... if just one other person learns something from my blog posts... then I consider that a job well done.
Advocate:
Along with educating others, I use my blog as an engine to advocate for children with Type 1 Diabetes... children like my son Lenny. I use it to keep my readers, and those who "stumble" across my blog, updated on our efforts to help find a cure. I use it to share information about new technologies, new experiments, new researches being done, that I have come across in my own research across the internet... ones that help our children live more like "normal" children, that give our children the hope for a cure in their lifetime.
To Help:
I use this blog to help other families living the same life we live. I use this blog to help newly diagnosed families feel "not so alone" in the journeys they will travel ahead. I use this blog to help others realize that, we are all fighting the same battles every day, though they may vary in situations, they are all the same at the core.
To Learn:
I use this blog to learn things for myself, and my family. I find that I learn a lot from my readers, commenters, and those "Featured T1-er's" that I interview. I learn a lot about myself through all these things, as well as learn a lot about all of you, how you cope with the everyday challenges that Type 1 present to us all, how you find solice and peace at the end of the day, how you all vent out your frustrations. It allows me to feel close to each and every one of you, even if we are all thousands of miles away, it allows me to hold a very special place for each and every one of you, each and every one of your children, in my heart. It allows me to learn so much about you, the real you. It is something that I find so much comfort in, personally, when I read your comments, your interview answers, knowing that we may all be from a different "blood line" but we are all facing the same battle. All fighting the same fight. All living the same life. You all, everyone I have met here, and across the DOC, are like a second family to me.
Theraputic:
I find it very theraputic to reach out to so many people through my blog. I find that, even though I may be having a "bad day", or a "stressful day", I know I can come here and express these feelings to you all and not be judged, criticized, or humiliated, because I know many of you have had days like these and will be supportive and understanding. Though, I don't post very often about my "bad days" as I do try to keep this blog as educational as I possibly can, I know that when I do come here and make a vent post, you all understand my situation, are willing to help my family come up with a solution, or just be there for us to be that "shoulder to cry on" when we need it. I also know that when our family has those "great days", the days where we just want to jump up and dance all day because of accomplishing an achievement, no matter how big or small, that you all will be here cheering and dancing with me! As I said, I view you all as a second family, and these small things that we share with one another, are the same small things I share with my closest blood family members; are the same reactions we receive from our closest family and friends.
Those are my 5 reasons for why I blog here.
Now, it is your turn! I encourage you to go on your own blog and do a blog meme about this very thing... why do you blog?
Here are the rules that DawnMarie posted on her meme post:
The Rules:
1. Comment below to answer the question with five reasons.
2. Create your own blog entry to continue the meme.
3. Give credit and link back to the original blog post and to the blog where you saw the meme shared.
4. Tag your friends and encourage them to participate.
Tuesday, March 1, 2011
Life Saver
Woke up at 6:30am.
Ahh, I can enjoy a cup of coffee first thing in the morning, before the kids wake up!
7am- kids up.
7:15am-
"Lenny, come on bud, eat. We gotta get ya dosed, dressed, hair and teeth brushed before your aide gets here"
7:30am-
"Lenny, hurry up with your waffle. Your aide is gonna be here in 15 minutes and your not dressed yet, not dosed yet, hair and teeth not brushed yet."
"Mackenzie, sit down and eat your breakfast. If you want to go to school today, ya gotta eat breakfast!"
7:35am-
"Ok, Lenny, go put on the clothes I put on your bed, then go brush your teeth."
"Mackenzie, eat baby girl!"
7:40am-
(sigh) "Lenny, leave your sister alone, get your shoes on, brush your hair and watch for your aide, shes going to be here soon"
"Mackenzie, leave Lenny alone. Sit down and eat"
Mackenzie says.... "Im not hungry. No." "Mackenzie, you have to eat. You like these!"
That was the start of our day... with the exception of a few "Am I going to have to seperate you two already?" comments LOL!
Lenny goes off to school, then Mackenzie goes off to school.
The day goes on. I had an enjoyable day talking with my friend Heather, who came over for a visit and to give us the Girl Scouts cookies we bought from her. Got a few (yes, I mean a few... very few LOL!) things done around the house after she left. Then, hubby came home.
Short time later...
*KNOCK KNOCK!* *DING DONG, DING DONG*
Lenny comes storming in, happy and giggly.
I asked him to go pick up his room.
He rushes and gets most of it done in the 15 minutes before she got home. I go and talk to Hubby for a bit while he does it.
Lenny comes in the room.
"Lenny... what do you have in your mouth?"
He spits out a Life Saver.
"WHERE did you get that?!"
"It was on my floor" (I recalled him coming home with one in his pocket, wrapped of course, on sunday night.)
"You know your not allowed to have these things without getting your sugar checked first Lenny. Why are you eating that?"
"I wanted it" (ok, inside i did have to kinda chuckle. Made me think "ok Mr. Obvious!" LOL but, I kept that to myself, was more concerned about how his sugar would react. Life Savers have about 4g carbs per piece. Anytime he gets more than 3g of carbs that are not covered with insulin, his sugar usually skyrockets.)
At first, I told him to throw it away. But, before he got to the trash can... I had a "lightbulb" moment (and as I say this, I think of the part of the Dispicable Me cartoon... LOL!) I say...
"Wait! Don't throw it away. You can have it. BUT.....
you and Mackenzie have to clean up your bedroom. If ya do, I'll let ya play outside till I get dinner done. The rules are though, when I say its time to come in, you can not get mad and throw a fit. Deal?"
He happily says "DEAL!!!" and runs into his room.
I love it when I can bribe my kids to clean their room LOL! He had most of the bedroom picked up before Mackenzie even got home! She gets home about 15 minutes after he does.
When Mackenzie got home, he only left her with a few things to pick up... and they were on their way outside.
45 minutes later...
"LENNY! MACKENZIE! TIME TO COME IN! DINNERTIME!!"
They come inside, and surprisingly no fights about it!
Check his sugar...
5..4..3..2..1...
54
Well, that's kind of a surprise! Thank goodness I let him have that Life Saver!
Ahh, I can enjoy a cup of coffee first thing in the morning, before the kids wake up!
7am- kids up.
7:15am-
"Lenny, come on bud, eat. We gotta get ya dosed, dressed, hair and teeth brushed before your aide gets here"
7:30am-
"Lenny, hurry up with your waffle. Your aide is gonna be here in 15 minutes and your not dressed yet, not dosed yet, hair and teeth not brushed yet."
"Mackenzie, sit down and eat your breakfast. If you want to go to school today, ya gotta eat breakfast!"
7:35am-
"Ok, Lenny, go put on the clothes I put on your bed, then go brush your teeth."
"Mackenzie, eat baby girl!"
7:40am-
(sigh) "Lenny, leave your sister alone, get your shoes on, brush your hair and watch for your aide, shes going to be here soon"
"Mackenzie, leave Lenny alone. Sit down and eat"
Mackenzie says.... "Im not hungry. No." "Mackenzie, you have to eat. You like these!"
That was the start of our day... with the exception of a few "Am I going to have to seperate you two already?" comments LOL!
Lenny goes off to school, then Mackenzie goes off to school.
The day goes on. I had an enjoyable day talking with my friend Heather, who came over for a visit and to give us the Girl Scouts cookies we bought from her. Got a few (yes, I mean a few... very few LOL!) things done around the house after she left. Then, hubby came home.
Short time later...
*KNOCK KNOCK!* *DING DONG, DING DONG*
Lenny comes storming in, happy and giggly.
I asked him to go pick up his room.
He rushes and gets most of it done in the 15 minutes before she got home. I go and talk to Hubby for a bit while he does it.
Lenny comes in the room.
"Lenny... what do you have in your mouth?"
He spits out a Life Saver.
"WHERE did you get that?!"
"It was on my floor" (I recalled him coming home with one in his pocket, wrapped of course, on sunday night.)
"You know your not allowed to have these things without getting your sugar checked first Lenny. Why are you eating that?"
"I wanted it" (ok, inside i did have to kinda chuckle. Made me think "ok Mr. Obvious!" LOL but, I kept that to myself, was more concerned about how his sugar would react. Life Savers have about 4g carbs per piece. Anytime he gets more than 3g of carbs that are not covered with insulin, his sugar usually skyrockets.)
At first, I told him to throw it away. But, before he got to the trash can... I had a "lightbulb" moment (and as I say this, I think of the part of the Dispicable Me cartoon... LOL!) I say...
"Wait! Don't throw it away. You can have it. BUT.....
you and Mackenzie have to clean up your bedroom. If ya do, I'll let ya play outside till I get dinner done. The rules are though, when I say its time to come in, you can not get mad and throw a fit. Deal?"
He happily says "DEAL!!!" and runs into his room.
I love it when I can bribe my kids to clean their room LOL! He had most of the bedroom picked up before Mackenzie even got home! She gets home about 15 minutes after he does.
When Mackenzie got home, he only left her with a few things to pick up... and they were on their way outside.
45 minutes later...
"LENNY! MACKENZIE! TIME TO COME IN! DINNERTIME!!"
They come inside, and surprisingly no fights about it!
Check his sugar...
5..4..3..2..1...
54
Well, that's kind of a surprise! Thank goodness I let him have that Life Saver!
Tuesday, February 22, 2011
For The Love Of D...
I thought that blog title was kinda cute, don't you?!
Me and "D" (diabetes), have this love/hate relationship going on.
"D" loves to drive me bonkers with the continual rollercoaster ride of emotions and blood sugar levels.
I hate "D" for what it does to my little boy, everything he has to do in his day to day life to manage this disease.
Yes, I know "hate" is such a strong word. I do try to save it for those things I truely do hate, by definition of the word. But, honestly, I DO hate "D".
What started this topic?
Well, last night, for whatever reason, Lenny was running a bit on the high side. At 6am, when his sugar climbed back up to 221, I decided to put him on a +30% temp basal for the remaining hour he was going to be sleeping, knowing that without that, because of the way I have his night time basals set up, he would have kept climbing much more.
Oddly enough, by 7am breakfast time, he still climbed... to 273, despite increasing the basal. I know, I know, today I will change his basal settings at night. I just can't wrap my brain around how, as of lately, regardless of putting him on a +30% temp basal, no matter what time of day it is, he still climbs.
Oh well, I'm just glad it didn't come with its friend, Ketones! For that, I must thank "D" for not making his day (and mine!) more miserable than it could have been!
Me and "D" (diabetes), have this love/hate relationship going on.
"D" loves to drive me bonkers with the continual rollercoaster ride of emotions and blood sugar levels.
I hate "D" for what it does to my little boy, everything he has to do in his day to day life to manage this disease.
Yes, I know "hate" is such a strong word. I do try to save it for those things I truely do hate, by definition of the word. But, honestly, I DO hate "D".
What started this topic?
Well, last night, for whatever reason, Lenny was running a bit on the high side. At 6am, when his sugar climbed back up to 221, I decided to put him on a +30% temp basal for the remaining hour he was going to be sleeping, knowing that without that, because of the way I have his night time basals set up, he would have kept climbing much more.
Oddly enough, by 7am breakfast time, he still climbed... to 273, despite increasing the basal. I know, I know, today I will change his basal settings at night. I just can't wrap my brain around how, as of lately, regardless of putting him on a +30% temp basal, no matter what time of day it is, he still climbs.
Oh well, I'm just glad it didn't come with its friend, Ketones! For that, I must thank "D" for not making his day (and mine!) more miserable than it could have been!
Tuesday, February 15, 2011
My Improvised Version of "Cupid Cups"
You remember my post from yesterday. The one about the yummy Valentines Day treats, including the one I saw posted on Leighann at D-Mom Blog, her "Cupid Cups"
I thought tonight I would make a brief post about my version of her Cupid Cups.
The reason I call them my version, is because I took her recipe, and molded it to fit the ingredients I had on hand, made larger portion sizes, and added another scoop (or two) of Sugar Free Cool-Whip on top with a marichino cherry. I didn't have the 2 boxes of Sugar Free Strawberry Jello, but I did have one box of Sugar Free Strawberry Jello, and one box of Sugar Free Cherry Jello. So, for color presentation, I used both. I put the Strawberry jello on the bottom layer, the cherry jello with cool whip on the second layer, then put a dallop of cool whip and the cherry on top!
I followed her instructions, using just mild ingredient variation, making larger portion sizes, and including more cool whip and the marichino cherry, and TADA!
The photo above was taken of my dessert. Lenny did not have that much extra cool whip on top. In fact, he only had the recommended 2 tbsp of cool whip, to help cut a few carbs (2tbsp sugar free cool whip is 3g carbs. I definitely have atleast 2-3 times that much on mine lol!)
I wish I had taken a photo of him eating his Improvised Cupid Cup, but, I didn't think of it. Honestly, I was enjoying my own too much, and the thought escaped me! LOL! I will say this though... he loved it! He got too full to finish it, so he only ate about half of it and saved the rest for later, but, his eyes got like saucers when I presented it to him tonight!
I estimated the carbs for this yummy treat, because of the portion sizes and the additional ingredients (extra cool whip and marichino cherry) to be approximately 10g carbs. His blood sugars faired well with this estimation, he was 98 at dinner and 195 at bedtime snack. I chalk the 100 point spike there to the fact that it took him a little over an hour to finish eating dinner plus half this tasty treat, and the fact that he is fighting a cold (and his blood sugars have been running quite high the last few days with this cold).
 |
| This is my version of Leighann's @ http://www.d-mom.com/ "cupid cups" |
I thought tonight I would make a brief post about my version of her Cupid Cups.
The reason I call them my version, is because I took her recipe, and molded it to fit the ingredients I had on hand, made larger portion sizes, and added another scoop (or two) of Sugar Free Cool-Whip on top with a marichino cherry. I didn't have the 2 boxes of Sugar Free Strawberry Jello, but I did have one box of Sugar Free Strawberry Jello, and one box of Sugar Free Cherry Jello. So, for color presentation, I used both. I put the Strawberry jello on the bottom layer, the cherry jello with cool whip on the second layer, then put a dallop of cool whip and the cherry on top!
I followed her instructions, using just mild ingredient variation, making larger portion sizes, and including more cool whip and the marichino cherry, and TADA!
The photo above was taken of my dessert. Lenny did not have that much extra cool whip on top. In fact, he only had the recommended 2 tbsp of cool whip, to help cut a few carbs (2tbsp sugar free cool whip is 3g carbs. I definitely have atleast 2-3 times that much on mine lol!)
I wish I had taken a photo of him eating his Improvised Cupid Cup, but, I didn't think of it. Honestly, I was enjoying my own too much, and the thought escaped me! LOL! I will say this though... he loved it! He got too full to finish it, so he only ate about half of it and saved the rest for later, but, his eyes got like saucers when I presented it to him tonight!
I estimated the carbs for this yummy treat, because of the portion sizes and the additional ingredients (extra cool whip and marichino cherry) to be approximately 10g carbs. His blood sugars faired well with this estimation, he was 98 at dinner and 195 at bedtime snack. I chalk the 100 point spike there to the fact that it took him a little over an hour to finish eating dinner plus half this tasty treat, and the fact that he is fighting a cold (and his blood sugars have been running quite high the last few days with this cold).
Wednesday, February 9, 2011
A Funny Story, and New Announcement!
I just had to share this funny story with you all!
Last night, while my husband and I had dentist appointments, we were sitting in the office room waiting for the doctor to come back in. Lenny somehow starts talking about teeth falling out.
So, we go into the story about the "tooth fairy" with him, and explained to him that she gives him money for every tooth he looses!
Without missing a beat... the first thing out of his mouth was:
"Money that I can donate for a cure??"
This little guy, he never ceases to amaze me!
We told him that if he wants to donate his money to a cure, he can. Or he can use it to buy a toy, or save it, or do whatever he wants with it... its his money!
Earlier in the visit, as he was talking to the nurse and doctor while I was getting some dental work done, out of the blue he told them that he has diabetes. All I could do was smile. I am so proud of him for being willing and brave to tell even perfect strangers that he has diabetes!
Now, for my exciting announcement!
We have a new project launching soon, right here on Sugar Free CandyLand!
We will be interviewing one D-mom, (and dads!!!), as well as adults with Type 1 Diabetes! We will feature one person living with Type 1 every Thursday, so be sure to drop by and check out what other parents and adults with Type 1 have to say!
Would you like to be interviewed, too?
Email us at T1DTeamLenny@gmail.com with the subject title "Interview" to express your interest in sharing your story with us!
Last night, while my husband and I had dentist appointments, we were sitting in the office room waiting for the doctor to come back in. Lenny somehow starts talking about teeth falling out.
Without missing a beat... the first thing out of his mouth was:
"Money that I can donate for a cure??"
This little guy, he never ceases to amaze me!
We told him that if he wants to donate his money to a cure, he can. Or he can use it to buy a toy, or save it, or do whatever he wants with it... its his money!
Earlier in the visit, as he was talking to the nurse and doctor while I was getting some dental work done, out of the blue he told them that he has diabetes. All I could do was smile. I am so proud of him for being willing and brave to tell even perfect strangers that he has diabetes!
Now, for my exciting announcement!
We have a new project launching soon, right here on Sugar Free CandyLand!
We will be interviewing one D-mom, (and dads!!!), as well as adults with Type 1 Diabetes! We will feature one person living with Type 1 every Thursday, so be sure to drop by and check out what other parents and adults with Type 1 have to say!
Would you like to be interviewed, too?
Email us at T1DTeamLenny@gmail.com with the subject title "Interview" to express your interest in sharing your story with us!
Friday, February 4, 2011
My Sweet Munchkins
First, I should probably start from the beginning. I must apologize for not blogging much over the past week or so. I had some dental surgery done and have been feeling quite crappy, to be honest. Because of the stitches, soreness/tenderness, swelling, amongst other things, I have not had much energy as I have not been able to eat properly. I promise that once things smooth over, and I am able to get my mind back on blogging more (and get over this writers block! LOL!), I will be back here writing your eyes out lol.
With that said, back to my sweet munchkins.
Ever since my dental surgery, my little munchkins have been quite angels! Don't get me wrong, they are typically good kids. But, you know kids. Kids can be mischevious, curious, as well as loads of fun! Well, since my dental issues started, they have really tried hard not to upset mommy. They ask every morning, "mom, are you feeling better today?" Actually, they ask that atleast twice a day. Once in the mornings, and then again usually when they get home from school. They really know how to warm your heart!
Everyone has chipped in drastically while I have been down. The kids have been doing an amazing job at keeping the living room cleaned up (as best they can anyway lol! I'm not picking up massive amounts of toys like I used to!). My husband has helped a lot with the rest of the housework; dishes, laundry, etc! My sister-in-law has washed a few loads of laundry for me right after I had my dental surgery done, so that the kids and hubby would have clean clothes for the week; because she knew I was on a "no lifting" restriction. My inlaws took the kids for several days so that I could rest and heal as quickly as possible. I just love my family, and don't know what I would ever do with out them!
Monday, November 8, 2010
Happy Birthday, My Wonderful Husband!
I just wanted to take a moment to say Happy Birthday to my wonderful Hubby!
I love you, baby!
Although you have to work on your birthday, I do hope you have a wonderful day. Since I wasn't able to buy you anything for your birthday, I hope you enjoy the brownies I'm going to make your you!
I hope you always remember that you and the kids mean the world to me! I love you all so much!
Happy Birthday!!!!!!!!!!!!!!!!!
Wednesday, October 27, 2010
Vigilence Is Key
The last few weeks has been a rocky road for us as a family. Battling lows, then battling highs. Now, currently, battling illness related ketones and consistant highs because of illness and diahrea.
I have kept something that has been going on with us "on the down-low" since the day Lenny fell in school. I only told a select few people from the "D community" of friends I have on facebook, not because I don't trust all of you, but just because, well, would you want to try to repeat a story to over 100 people? LOL!
I haven't posted much about this on my wall either. But, now that it seems the metaphoric storm is over, I wanted to share something with you.
As a mom of a diabetic parent, my #1 priority is to be sure my children are safe and healthy, in school, at home, and away from home.
That said, when I feel as if my "control" over my child(ren)s medical conditions is being limited, it upsets me.
First, let me start off by saying, I am fully aware of how school nurses must abide by laws, regulations, and policies set upon them. I am also very understanding about this. That said, I do not blame the school nurses involved with Lenny's diabetes management for why things previously were so difficult. I do not blame them for asking for doctor orders for the changes and "last minute decisions" I have had to make over the last couple of weeks to prevent lows from occurring, when I needed to deviate from the original Diabetes Medical Management Plan we had set up at the beginning of the school year. It isn't their fault, they were just following the laws, regulations, and policies they should be following.
Does this make it less stressful for the parents? NO! In fact, in my personal experience, I think it made me MORE stressed!
So, all that said, here is what has been happening over the last few weeks that I have said very little about on facebook or anywhere else.
As you all may recall, Lenny fell in school one day a few weeks ago. The nurse called me and told me about it, said he looked confused, so she checked his sugar and the meter read he was fine (if I recall correctly, maybe he was even a little on the high side). We played it out till snack, and by snack time, he crashed... hard. The next day, a similar situation occurred. Although, Lenny did not fall that time, he was still crashing hard, and told someone he felt low. They checked him and his blood sugar was 127. I told them to give him 2 glucose tabs because I was seeing a pattern with this, and he still had insulin on board, and without the tabs, he would crash again by snack like he did the previous day. They did so, then asked me later if I could get the school an order from the doctor for that. I did. This pattern had gone on for about a week and a half. I did make some changes to his basal and I:C at breakfast, as our endo suggested, and things worked out. However, I wanted to put him on a temp basal at lunch one day to prevent the dinner time crashes he was experienceing. He has lunch, then 40 minutes of gym, then 20 minutes of recess, then afternoon snack. All the activity after gym was causing delayed hypo reactions after snack, despite having a 15-20 gram carb snack.
Long story short, I wound up having to get the school 4+ doctor orders for various last minute decisions for, what I call, "preventative maintenance" purposes... in 2 week time frame. Some days it was getting 2 school orders in a day, or one one day and another the next. It was absolutely rediculous!
On one of the more high stressed days, I must admit, I exploaded on the school nurse for asking for another school order. I did apologize later, because, I know it is not her fault and she did not deserve it. She was just following orders/laws, etc. She was just doing her job.
I asked her, "What law states the doctor can not put "Per moms request" on a school order for medication"
It was the PA Code: Professional Nursing Law is what I have been repeatedly told regarding this, since MAY!
Since May, no one has been able to tell me where in this particular law I could find that it states doctor orders must specifically state dosages for medications. So, I went researching. The nurse did her own "investigating" too, by contacting school nurse consultants and such and talking things over with me.
For the last two weeks, I have been doing google search after google search. Speaking with other "D-moms" both within the state of PA and in other states, etc. I had also contacted places like the "Bureau of Special Education's Consultline, A Parent Helpline" , PA Bar Association, and tried getting in contact with an attorney just for the pure and simple reason of trying to have someone with legal knowledge explain this particular law to me and verify or nullify my understanding OF the law. I contacted an ADA advocate about it over the summer as well. I pulled out as many stops as I could to educate myself on this law!
Determined? Absolutely!
I have so many .pdf files on my computer regarding this, you wouldn't believe it!
Then I got a phone call from our endo late in the evening one night last week. It was like 7:30pm when she called... totally caught us off guard LOL! She apologized for calling so late but said she was still at work and received a revised DMMP form from the school nurse, with different "parameters" for hypoglycemic treatment. It kind of confused her because I had never mentioned to her what was going on. I told her that I was trying not to involve the endo's with it just yet until I learned more about this particular law and parental/child rights regarding it. I told her everything that had been happening, and expressed my concerns with the current DMMP plan we set up before school started. Told her that the current DMMP plan does not allow me to make split second decisions that could prevent a hypoglycemic event from occurring under the parameters set in place on the DMMP plan, that I needed more flexibility and control over situtations. Explained the hypo events we had had over the past weeks, and told her I can not continue to call Childrens Hospital on an almost daily basis over minor changes and tweeks that need made for "preventative maintence" purposes. I also told her that I had contacted an attorney to learn more about the law, from a legal specialist. When she heard that, she sounded very impressed that I had taken this route. She did ask if I had contacted an advocate from the ADA and I told her that I did back in May, but didn't feel confident in what I was told in regards to all of this, so I wanted to get it straight from an attorney to be 200% sure I knew what was going on with this law. She told me to keep her posted on my findings, and that this could very well help many other families!
I wasn't too happy that the school nurse had emailed a new DMMP over to our endo without talking with us first, I must admit. She did call me the next day though and mentioned it and said she just wanted to get the doctors input on it. The school nurses have been absolutely wonderful in regards to keeping Lenny's best interest at heart, and doing what needs to be done for his diabetes. Granted, I wish they had contacted me about this first, but, I also know that if the doctor DID sign that prior to my knowledge... it would have come to a screeching hault asap lol.
After discussing all of that with the school nurse, I understand why she did what she did, may not be happy with it still, but, I understand.
We had shared notes with the school nurse and vice versa to see where we could come up with a mutual agreement that would still be within legal limitations.
I told her that I could not understand why other area school districts were able to give the parents more control but our school district is being so particular about this state law. All schools in the state must still abide by that law if it in fact states things as they are understanding it. She said she would contact other area schools to see what they are doing to be able to work with the parents.
That leads us up to today.
From 8am till about 11am I was on and off the phone with the school nurse, discussing how we could find that much needed "happy medium". She had spoke with the other school districts and it helped her to come up with some ideas and alternatives that would still be within the laws and regulations.
Then, I told her about this .pdf thing called Diabetes in School Children with a DMMP plan and other sample forms that I had come across that was designed by the PA Dept of Health and Diabetes Prevention & Control Program. Told her that it has a line in there that states "Parents are authorized to adjust the insulin dosage under the following circumstances:_____". I told her that this is about a 4 page document, but is sooo specific about all aspects of diabetes management, including for children with Type 2 diabetes, those with Type 1 taking injections, as well as those on the pump, this one might be a better fit for us.
After discussing it all with her, and finding out that appearently this is the DMMP plan that many local D-parents use in the surrounding school districts and it works out for them, as well as is legitimate under the Nursing Law, she said she would feel comfortable with it, and to talk it over with our endo and if she feels comfortable with it, then go ahead and fill it out and have it signed so we can enforce it immediately. She said since she actually has that exact 54 page "book" that I got this form from (I emailed it to her for her to cross reference and she actually does have it... I seen it at the trainings before school started LOL!), that when she presents the new DMMP plan to her supervisor, she would be sure to let her supervisor know that this is where I received this specific DMMP form, that this is where I referenced it. She said she would tell her supervisor that since it was from the PA Department of Health and the Diabetes Prevention and Control Program, that she is comfortable with it. She said our original DMMP plan that we had set up before the school year started was actually excerpts from this 4 page one, that she was just trying to include the most relevant parts pertaining to pump therapy as well as hypo/hyper, ketones etc... but she didn't realize the detail that she was condensing. Honestly, had I been in her shoes and seen the vast amount of coverage that this 4 page DMMP included (in regards to children that take pills for their diabetes, etc), I probably would have thought the same thing she did, so, I really don't blame her for trying to condense it down to something more individualized.
Anyway, Lenny had his appointment today with the endo, and we went over all of this. We created a new DMMP using this 4 page form. I also gave the dr some of the information I had collected in my research over this law, as well as emailed her the rest of my information regarding it after I got home. Hopefully this will help other parents, atleast in the state of PA, in the future. All has been worked out, and I think things should go more smoothly now.
As I get a chance, I will post links on another page on the blog to my findings regarding the PA Code: Professional Nursing Law, as well as other documents that may help parents in the state of PA gain a little more control over situations with their childs diabetes in schools.
As for Lenny's diabetes check up. His A1C was 7.9. Thats the highest it has been since diagnosis... however, he has had several days with ketones over the last 3 months, due to illnesses since starting school. He also had ketones this morning as well, so, taking that into consideration, he is doing pretty darned good! They gave us some angled infusion sets to try out to see if they would help open up some more site locations for us as well. All in all, a pretty darned good day, even with the ugly show of Ketones first thing in the morning!
I don't think he will be going to school tomorrow though. He woke up at midnight tonight with a very bad case of diahrea. This explains the ketones yesterday.....viral infection, again.
So, the moral to this story is... Vigilence and Determination is Key. Do your research, stick to your guns, unless you find out for sure, without a doubt, that what you want to see accomplished is against the law. And, don't forget, communication and cooperation with the schools is very very important. We can't just go in there guns-a-blazing. We must be able to try to work with them, keep communication lines open, but yet, keep our children's needs and concerns at the forefront. It's yet another balancing act we must learn to manage.
In Control: A Guide for Teens With Diabetes (Juvenile Diabetes Foundation Library)
I have kept something that has been going on with us "on the down-low" since the day Lenny fell in school. I only told a select few people from the "D community" of friends I have on facebook, not because I don't trust all of you, but just because, well, would you want to try to repeat a story to over 100 people? LOL!
I haven't posted much about this on my wall either. But, now that it seems the metaphoric storm is over, I wanted to share something with you.
As a mom of a diabetic parent, my #1 priority is to be sure my children are safe and healthy, in school, at home, and away from home.
That said, when I feel as if my "control" over my child(ren)s medical conditions is being limited, it upsets me.
First, let me start off by saying, I am fully aware of how school nurses must abide by laws, regulations, and policies set upon them. I am also very understanding about this. That said, I do not blame the school nurses involved with Lenny's diabetes management for why things previously were so difficult. I do not blame them for asking for doctor orders for the changes and "last minute decisions" I have had to make over the last couple of weeks to prevent lows from occurring, when I needed to deviate from the original Diabetes Medical Management Plan we had set up at the beginning of the school year. It isn't their fault, they were just following the laws, regulations, and policies they should be following.
Does this make it less stressful for the parents? NO! In fact, in my personal experience, I think it made me MORE stressed!
So, all that said, here is what has been happening over the last few weeks that I have said very little about on facebook or anywhere else.
As you all may recall, Lenny fell in school one day a few weeks ago. The nurse called me and told me about it, said he looked confused, so she checked his sugar and the meter read he was fine (if I recall correctly, maybe he was even a little on the high side). We played it out till snack, and by snack time, he crashed... hard. The next day, a similar situation occurred. Although, Lenny did not fall that time, he was still crashing hard, and told someone he felt low. They checked him and his blood sugar was 127. I told them to give him 2 glucose tabs because I was seeing a pattern with this, and he still had insulin on board, and without the tabs, he would crash again by snack like he did the previous day. They did so, then asked me later if I could get the school an order from the doctor for that. I did. This pattern had gone on for about a week and a half. I did make some changes to his basal and I:C at breakfast, as our endo suggested, and things worked out. However, I wanted to put him on a temp basal at lunch one day to prevent the dinner time crashes he was experienceing. He has lunch, then 40 minutes of gym, then 20 minutes of recess, then afternoon snack. All the activity after gym was causing delayed hypo reactions after snack, despite having a 15-20 gram carb snack.
Long story short, I wound up having to get the school 4+ doctor orders for various last minute decisions for, what I call, "preventative maintenance" purposes... in 2 week time frame. Some days it was getting 2 school orders in a day, or one one day and another the next. It was absolutely rediculous!
On one of the more high stressed days, I must admit, I exploaded on the school nurse for asking for another school order. I did apologize later, because, I know it is not her fault and she did not deserve it. She was just following orders/laws, etc. She was just doing her job.
I asked her, "What law states the doctor can not put "Per moms request" on a school order for medication"
It was the PA Code: Professional Nursing Law is what I have been repeatedly told regarding this, since MAY!
Since May, no one has been able to tell me where in this particular law I could find that it states doctor orders must specifically state dosages for medications. So, I went researching. The nurse did her own "investigating" too, by contacting school nurse consultants and such and talking things over with me.
For the last two weeks, I have been doing google search after google search. Speaking with other "D-moms" both within the state of PA and in other states, etc. I had also contacted places like the "Bureau of Special Education's Consultline, A Parent Helpline" , PA Bar Association, and tried getting in contact with an attorney just for the pure and simple reason of trying to have someone with legal knowledge explain this particular law to me and verify or nullify my understanding OF the law. I contacted an ADA advocate about it over the summer as well. I pulled out as many stops as I could to educate myself on this law!
Determined? Absolutely!
I have so many .pdf files on my computer regarding this, you wouldn't believe it!
Then I got a phone call from our endo late in the evening one night last week. It was like 7:30pm when she called... totally caught us off guard LOL! She apologized for calling so late but said she was still at work and received a revised DMMP form from the school nurse, with different "parameters" for hypoglycemic treatment. It kind of confused her because I had never mentioned to her what was going on. I told her that I was trying not to involve the endo's with it just yet until I learned more about this particular law and parental/child rights regarding it. I told her everything that had been happening, and expressed my concerns with the current DMMP plan we set up before school started. Told her that the current DMMP plan does not allow me to make split second decisions that could prevent a hypoglycemic event from occurring under the parameters set in place on the DMMP plan, that I needed more flexibility and control over situtations. Explained the hypo events we had had over the past weeks, and told her I can not continue to call Childrens Hospital on an almost daily basis over minor changes and tweeks that need made for "preventative maintence" purposes. I also told her that I had contacted an attorney to learn more about the law, from a legal specialist. When she heard that, she sounded very impressed that I had taken this route. She did ask if I had contacted an advocate from the ADA and I told her that I did back in May, but didn't feel confident in what I was told in regards to all of this, so I wanted to get it straight from an attorney to be 200% sure I knew what was going on with this law. She told me to keep her posted on my findings, and that this could very well help many other families!
I wasn't too happy that the school nurse had emailed a new DMMP over to our endo without talking with us first, I must admit. She did call me the next day though and mentioned it and said she just wanted to get the doctors input on it. The school nurses have been absolutely wonderful in regards to keeping Lenny's best interest at heart, and doing what needs to be done for his diabetes. Granted, I wish they had contacted me about this first, but, I also know that if the doctor DID sign that prior to my knowledge... it would have come to a screeching hault asap lol.
After discussing all of that with the school nurse, I understand why she did what she did, may not be happy with it still, but, I understand.
We had shared notes with the school nurse and vice versa to see where we could come up with a mutual agreement that would still be within legal limitations.
I told her that I could not understand why other area school districts were able to give the parents more control but our school district is being so particular about this state law. All schools in the state must still abide by that law if it in fact states things as they are understanding it. She said she would contact other area schools to see what they are doing to be able to work with the parents.
That leads us up to today.
From 8am till about 11am I was on and off the phone with the school nurse, discussing how we could find that much needed "happy medium". She had spoke with the other school districts and it helped her to come up with some ideas and alternatives that would still be within the laws and regulations.
Then, I told her about this .pdf thing called Diabetes in School Children with a DMMP plan and other sample forms that I had come across that was designed by the PA Dept of Health and Diabetes Prevention & Control Program. Told her that it has a line in there that states "Parents are authorized to adjust the insulin dosage under the following circumstances:_____". I told her that this is about a 4 page document, but is sooo specific about all aspects of diabetes management, including for children with Type 2 diabetes, those with Type 1 taking injections, as well as those on the pump, this one might be a better fit for us.
After discussing it all with her, and finding out that appearently this is the DMMP plan that many local D-parents use in the surrounding school districts and it works out for them, as well as is legitimate under the Nursing Law, she said she would feel comfortable with it, and to talk it over with our endo and if she feels comfortable with it, then go ahead and fill it out and have it signed so we can enforce it immediately. She said since she actually has that exact 54 page "book" that I got this form from (I emailed it to her for her to cross reference and she actually does have it... I seen it at the trainings before school started LOL!), that when she presents the new DMMP plan to her supervisor, she would be sure to let her supervisor know that this is where I received this specific DMMP form, that this is where I referenced it. She said she would tell her supervisor that since it was from the PA Department of Health and the Diabetes Prevention and Control Program, that she is comfortable with it. She said our original DMMP plan that we had set up before the school year started was actually excerpts from this 4 page one, that she was just trying to include the most relevant parts pertaining to pump therapy as well as hypo/hyper, ketones etc... but she didn't realize the detail that she was condensing. Honestly, had I been in her shoes and seen the vast amount of coverage that this 4 page DMMP included (in regards to children that take pills for their diabetes, etc), I probably would have thought the same thing she did, so, I really don't blame her for trying to condense it down to something more individualized.
Anyway, Lenny had his appointment today with the endo, and we went over all of this. We created a new DMMP using this 4 page form. I also gave the dr some of the information I had collected in my research over this law, as well as emailed her the rest of my information regarding it after I got home. Hopefully this will help other parents, atleast in the state of PA, in the future. All has been worked out, and I think things should go more smoothly now.
As I get a chance, I will post links on another page on the blog to my findings regarding the PA Code: Professional Nursing Law, as well as other documents that may help parents in the state of PA gain a little more control over situations with their childs diabetes in schools.
As for Lenny's diabetes check up. His A1C was 7.9. Thats the highest it has been since diagnosis... however, he has had several days with ketones over the last 3 months, due to illnesses since starting school. He also had ketones this morning as well, so, taking that into consideration, he is doing pretty darned good! They gave us some angled infusion sets to try out to see if they would help open up some more site locations for us as well. All in all, a pretty darned good day, even with the ugly show of Ketones first thing in the morning!
I don't think he will be going to school tomorrow though. He woke up at midnight tonight with a very bad case of diahrea. This explains the ketones yesterday.....viral infection, again.
So, the moral to this story is... Vigilence and Determination is Key. Do your research, stick to your guns, unless you find out for sure, without a doubt, that what you want to see accomplished is against the law. And, don't forget, communication and cooperation with the schools is very very important. We can't just go in there guns-a-blazing. We must be able to try to work with them, keep communication lines open, but yet, keep our children's needs and concerns at the forefront. It's yet another balancing act we must learn to manage.
In Control: A Guide for Teens With Diabetes (Juvenile Diabetes Foundation Library)
Tuesday, October 26, 2010
"Us vs Them" Controversy
A few days ago, I read something on facebook, posted by another "diabetes community" that I occationally read. It was someone's opinion of the "Us Vs. Them" Controversy that, I guess, appearently is flooding the online diabetes world.
I don't really hear too much about this controversy, except from time to time.
To my understanding, the controversy (atleast from what I am understanding as far as some of the things I have read over recent months) is Type 1 (us) vs. Type 2 (them). Is it, who's disease is harder? Which disease is easier? Which is more serious? I don't know.
Honestly, my opinions of this controversy are simple.
I personally don't think the controversy is over which is harder, which is easier, which is more serious, or anything of that nature.
I think the hardest thing, for Type 1 parents, like myself, when hearing about "diabetes" in general, is just that... the generalization.
You see on the news, tv commercials, and a vast amount of information on the internet about "how to prevent diabetes", "how to control diabetes", as well as various products and services surrounding these same topics.
What do all these things have in common? Generalization.
Have you ever wondered, why so many people in this day and age really don't know that much about either type? Why, when people say "oh, my little boy is diabetic", they instantly think about type 2 and obesity? Why so many people believe the misconceptions regarding diabetes (type 1)?
It is because the media generalizes diabetes, instead of recognising the diseases as seperate.
No, I don't really think either one is harder or easier. While yes, in the "bad days" phases of managing my own son's diabetes, I fall victim to thinking that way. But, I do feel bad for those with Type 2, and Gestational, and, the ever so rare Type 1.5 (yes its real! Click the words to learn more!). However, I think each type also comes with its own set of worries, frustrations, fears, and complications. Some may be similar to what we, as parents of type 1 children, go through, some, may not be. Who knows. I can only speak from the personal experiences I encounter as a mother of a type 1 child.
However, I do think, if the media would differenciate the different types, instead of generalizing "diabetes", it would not only help the awareness factor for diabetes as a whole, but also the individual types, possibly help parents across the globe "see" the signs of type 1 before DKA sets in, educate the public more on the severity of the disease(s), and help lessen some of the frustrations many parents experience.
What frustrations am I referring to?
Just to name a few...
1) The looks we get when telling our children "no" in the candy isle.
2) Some of the questions we receive regarding our child's medical condition. While, deep down we know these questions are just because they don't know, and are trying to learn... for some parents, having to answer the same questions a million different times because the general public is left oblivious about the disease, because the media doesn't communicate the differences, causes, management care, etc properly, can become tedious, tiresome, and yes, even frustrating at times. I remember when my son was first diagnosed, how many times I got asked the question "did he get diabetes because he ate too much candy?" For a while there, that question used to get under my skin, not so much because of who was asking the question, or the question itself, but just the sheer fact that so many people are so unaware of this disease. It doesn't bother me as much anymore, and instead, now I am at the point where I encourage questions like these, and many others... in an effort to help teach people the true, cold hard facts, about the disease.
3) The frustration of hearing about another child being diagnosed, but diagnosed while during DKA. I know for myself, had I been informed properly about diabetes, the types, the symptoms, etc. early on, I probably would have been able to recognise the symptoms sooner. Maybe not, but, the possiblity would have been greater. Maybe my son's blood sugar wouldn't have been 593 with very large ketones and an A1C level of 12.5% at diagnosis, had there been enough media attention to the disease, the individual types, and their "causes" and symptoms.
So, do I have the "Us vs. Them" mentallity? Some may think so, but I'd like to think not. I'd like to think my mentallity is more about how to educate the public more on the different types, instead of lumping all the different types of this disease into one category. I think by generalizing it to the public, it actually causes more confusion, less awareness, and ultimately, possibly delaying early detection for children.
Those are just my thoughts on this matter.
What are your thoughts?
I don't really hear too much about this controversy, except from time to time.
To my understanding, the controversy (atleast from what I am understanding as far as some of the things I have read over recent months) is Type 1 (us) vs. Type 2 (them). Is it, who's disease is harder? Which disease is easier? Which is more serious? I don't know.
Honestly, my opinions of this controversy are simple.
I personally don't think the controversy is over which is harder, which is easier, which is more serious, or anything of that nature.
I think the hardest thing, for Type 1 parents, like myself, when hearing about "diabetes" in general, is just that... the generalization.
You see on the news, tv commercials, and a vast amount of information on the internet about "how to prevent diabetes", "how to control diabetes", as well as various products and services surrounding these same topics.
What do all these things have in common? Generalization.
Have you ever wondered, why so many people in this day and age really don't know that much about either type? Why, when people say "oh, my little boy is diabetic", they instantly think about type 2 and obesity? Why so many people believe the misconceptions regarding diabetes (type 1)?
It is because the media generalizes diabetes, instead of recognising the diseases as seperate.
No, I don't really think either one is harder or easier. While yes, in the "bad days" phases of managing my own son's diabetes, I fall victim to thinking that way. But, I do feel bad for those with Type 2, and Gestational, and, the ever so rare Type 1.5 (yes its real! Click the words to learn more!). However, I think each type also comes with its own set of worries, frustrations, fears, and complications. Some may be similar to what we, as parents of type 1 children, go through, some, may not be. Who knows. I can only speak from the personal experiences I encounter as a mother of a type 1 child.
However, I do think, if the media would differenciate the different types, instead of generalizing "diabetes", it would not only help the awareness factor for diabetes as a whole, but also the individual types, possibly help parents across the globe "see" the signs of type 1 before DKA sets in, educate the public more on the severity of the disease(s), and help lessen some of the frustrations many parents experience.
What frustrations am I referring to?
Just to name a few...
1) The looks we get when telling our children "no" in the candy isle.
2) Some of the questions we receive regarding our child's medical condition. While, deep down we know these questions are just because they don't know, and are trying to learn... for some parents, having to answer the same questions a million different times because the general public is left oblivious about the disease, because the media doesn't communicate the differences, causes, management care, etc properly, can become tedious, tiresome, and yes, even frustrating at times. I remember when my son was first diagnosed, how many times I got asked the question "did he get diabetes because he ate too much candy?" For a while there, that question used to get under my skin, not so much because of who was asking the question, or the question itself, but just the sheer fact that so many people are so unaware of this disease. It doesn't bother me as much anymore, and instead, now I am at the point where I encourage questions like these, and many others... in an effort to help teach people the true, cold hard facts, about the disease.
3) The frustration of hearing about another child being diagnosed, but diagnosed while during DKA. I know for myself, had I been informed properly about diabetes, the types, the symptoms, etc. early on, I probably would have been able to recognise the symptoms sooner. Maybe not, but, the possiblity would have been greater. Maybe my son's blood sugar wouldn't have been 593 with very large ketones and an A1C level of 12.5% at diagnosis, had there been enough media attention to the disease, the individual types, and their "causes" and symptoms.
So, do I have the "Us vs. Them" mentallity? Some may think so, but I'd like to think not. I'd like to think my mentallity is more about how to educate the public more on the different types, instead of lumping all the different types of this disease into one category. I think by generalizing it to the public, it actually causes more confusion, less awareness, and ultimately, possibly delaying early detection for children.
Those are just my thoughts on this matter.
What are your thoughts?
Monday, October 25, 2010
Diabetes Awareness Month is approaching
Diabetes Awareness Month is approaching us quickly. I have several ideas for blog posts regarding Diabetes, what it is, pre-diagnosis symptoms, and much more, however, I'm not sure I have enough ideas to blog about for every day in the month of November! LOL!
I need your help!
Let's hear what type of topics YOU would like to see discussed here. If you or a loved one has diabetes, what would YOU like our readers to learn more about regarding diabetes? What struggles would you like the general public to realize that you or your loved ones experience? What knowledge would you like the non-diabetic community to learn more about? Let's hear it!
Also, I would like to ask you to please help spread the word about our little blog. The more readers, both people with and without diabetes, we have following our blog, the more people we can make aware of the disease, and educate. That's originally what my "plan" for this blog was all about... although, I know at times I tend to ramble about what's going on with Lenny's diabetes.
I need your help!
Let's hear what type of topics YOU would like to see discussed here. If you or a loved one has diabetes, what would YOU like our readers to learn more about regarding diabetes? What struggles would you like the general public to realize that you or your loved ones experience? What knowledge would you like the non-diabetic community to learn more about? Let's hear it!
Also, I would like to ask you to please help spread the word about our little blog. The more readers, both people with and without diabetes, we have following our blog, the more people we can make aware of the disease, and educate. That's originally what my "plan" for this blog was all about... although, I know at times I tend to ramble about what's going on with Lenny's diabetes.
Friday, October 22, 2010
How would you celebrate?
This is a thought I find myself thinking about relatively often.
How would we celebrate the day we heard the news that they have found a cure for Diabetes?
How would we celebrate the day our child received that cure?
Every time I think about these two questions, I always manage to come up with a different answer.
I tease my husband all the time and tell him that "The day they find a cure, I'm going to go to ever house in Cresson and give whoever answers the door a big hug and kiss... walk down the main street and do the same to every person I run into"
Realistically, yeah, that probably wouldn't happen LOL! Though, I do, realistically, envision myself jumping up and down screaming at the top of my lungs! I see myself feeling an overwhelming variety of emotions... mostly happy emotions, like the ones that hit you to the core of your being. The kind of happy and excited emotions that make you cry uncontrollably.
The day my son receives the cure... how would we celebrate?
Sometimes I think we would take him out to The Meadows frozen yogurt shoppe and just let him go hog wild, not hold him back on the amount, type, or kind of frozen yogurt, ice cream, or custard that he wanted. Let him eat absolutely anything and everything he wanted, any time of the day. Yeah, sure, he'd be throwing up later that night.... but seeing him being so care-free, worry-free, and enjoying his "back to normal" life will be SO worth the "puke clean-up duty" LOL!
I also think after our initial "family celebration", I would probably call up/contact on face book, some of the local D-Moms I have met, going through the same things, and plan a huge "DIABETES FAMILY" celebration as well, getting everyone together to celebrate our achievement on "kicking diabetes' butt"! Everyone living with diabetes, whether its the individual, or you are taking care of someone with it... deserves to celebrate the day we can finally tell diabetes to GO AWAY and NEVER RETURN!
I would also reminisce, and say a little prayer, to those who have lost the battle over the years. Just this week, as I was reading some of my face book friends status updates, I learned that diabetes has claimed the life of another innocent child. She was 13 years old, and died of the "Dead In Bed Syndrome". She left behind 2 wonderful, loving parents, and a sibling who will always love and miss her dearly.
After finding out that news this week, I literally cried for 30 minutes. I cried for the family. I cried for the poor innocent child. I cried because of the reality that struck. I cried for my child. I cried for your child. And, I cried because of pure anger toward this disease. We need a cure.
So, if you were told that the researchers have found a cure for Diabetes... how would you celebrate? How would you celebrate the day your child received that cure?
I am really looking forward to hearing everyone's responses!
How would we celebrate the day we heard the news that they have found a cure for Diabetes?
How would we celebrate the day our child received that cure?
Every time I think about these two questions, I always manage to come up with a different answer.
I tease my husband all the time and tell him that "The day they find a cure, I'm going to go to ever house in Cresson and give whoever answers the door a big hug and kiss... walk down the main street and do the same to every person I run into"
Realistically, yeah, that probably wouldn't happen LOL! Though, I do, realistically, envision myself jumping up and down screaming at the top of my lungs! I see myself feeling an overwhelming variety of emotions... mostly happy emotions, like the ones that hit you to the core of your being. The kind of happy and excited emotions that make you cry uncontrollably.
The day my son receives the cure... how would we celebrate?
Sometimes I think we would take him out to The Meadows frozen yogurt shoppe and just let him go hog wild, not hold him back on the amount, type, or kind of frozen yogurt, ice cream, or custard that he wanted. Let him eat absolutely anything and everything he wanted, any time of the day. Yeah, sure, he'd be throwing up later that night.... but seeing him being so care-free, worry-free, and enjoying his "back to normal" life will be SO worth the "puke clean-up duty" LOL!
I also think after our initial "family celebration", I would probably call up/contact on face book, some of the local D-Moms I have met, going through the same things, and plan a huge "DIABETES FAMILY" celebration as well, getting everyone together to celebrate our achievement on "kicking diabetes' butt"! Everyone living with diabetes, whether its the individual, or you are taking care of someone with it... deserves to celebrate the day we can finally tell diabetes to GO AWAY and NEVER RETURN!
I would also reminisce, and say a little prayer, to those who have lost the battle over the years. Just this week, as I was reading some of my face book friends status updates, I learned that diabetes has claimed the life of another innocent child. She was 13 years old, and died of the "Dead In Bed Syndrome". She left behind 2 wonderful, loving parents, and a sibling who will always love and miss her dearly.
After finding out that news this week, I literally cried for 30 minutes. I cried for the family. I cried for the poor innocent child. I cried because of the reality that struck. I cried for my child. I cried for your child. And, I cried because of pure anger toward this disease. We need a cure.
So, if you were told that the researchers have found a cure for Diabetes... how would you celebrate? How would you celebrate the day your child received that cure?
I am really looking forward to hearing everyone's responses!
Wednesday, October 13, 2010
A day of low bgs, and a fuming conversation with a McDonalds manager
Let me start from where I left you all off last night, at the midnight check.
So, midnight rolled around last night and his blood sugar was 115. WOOHOO! GREAT! However, I still anticipated a low, but not until atleast 5am or breakfast time.
3am rolls around. 69. Sigh. Gave him 2 glucose tabs and rechecked at 3:30. He went up to 81.
I weighed the pros and cons on that one. Overnight, his endo's don't want him to be lower than 80. I let it go and rechecked him at 4:15am. 136 bg.
Oh yeah! Maybe we got this thing whipped!
Breakfast was at 7am and he had his usual breakfast that he almost always has. His blood sugar was 125 at that time. He was dosed at 7:15 am.
Again... YEAH! We're back on track!
Or so we thought.
8:45am I get a phone call from the school nurse. "I just wanted to call and let you know that Lenny fell in the hallway. He didn't hit his head or anything, but he seemed confused, so I checked his sugar. It was 187."
My first words...."thats not high enough an hour and a half after eating breakfast! Keep a very close eye on him for a low." I was on the phone with her till about 9:15 or 9:30. She said she has him sitting right next to her right now (in the classroom) and as of that moment, he seemed like he was fine. I said, ok, just watch for a low, because it sounds to me like hes going to crash.
10am snack time comes around. At about 10:20am I get a phone call. She said his blood sugar was 51 for snack, she gave him 4 glucose tabs, waited 15 minutes and rechecked him and he came up to 135. Ok, I never seen a jump like that after correcting a low then rechecking 15 mins later, but, I wont complain! She said she gave him a 16g carb snack (goldfish crackers) and dosed him for the snack carbs. Not a problem, worst case scenario he will be high at lunch.
Lunch time is at 12:15pm. By 12:20 I hadn't heard anything, so I called the school. I feel bad cuz I interrupted the lunch time (head nurse) nurse's lunch when I called, but I just had to check on him. She said his blood sugar before lunch was 230. I asked her if she had any idea about the activity level in the classroom this morning to see if that crash could have been caused by that. She said no, but they typically dont have much activity during that time... the teachers keep things pretty routine and structured, but, she said she'd see if she could find out and give me a call to let me know. There was no change in routine in the classroom.
So, then I get a phone call at 1:40pm... right before gym class. His blood sugar was 289. HMMM. Only a 59 point increase since lunch. Something's not right. I told her its not as high as it should be an hour and a half after lunch. He should have, at the very least, been in the 300s, if not 400s by then. I told her, again, watch for low symptoms. Actually, I BEGGED her to keep an extremely close eye on him during gym class. Gym class is 40 minutes long. I also asked her to call me back for every check there on after.
She called me back at 2:20pm, for his after gym class blood sugar check. He was 234. I said, well, that was a good 55 point drop. She asked me if he could go to recess because he was BEGGING to go LOL! I hesitantly said yes, go ahead, and begged again to keep close tabs on him. I told her, again, I'm expecting a crash again by the end of the day. Recess is 20 minutes long.
She called me back at 2:50pm for his before afternoon snack blood sugar reading. She said he was 136.
I told her he is most definitely going to crash by the time he gets home at 3:45pm-ish. She said she gave him the chocolate covered pretzels snacks (100 calorie snack pack... 16-20g carbs) already, I told her to give him the cheese stick I put in the diabetes back that morning. He WOOFED that down fast... she said it was like in 2 bites HAHA! I told her to go ahead and bolus for the snack carbs, that I was going to call my husband and see if he could pick Lenny up from school instead of putting him on the bus because I was scared he would have a severe crash on the bus, then I'd call her back to let her know. Hubby was already having to pick up our daughter from Head Start after he got off work, and should be able to just swing by and pick him up as well on his way back home. The school is a 2 minute drive from my house. Literally.
So, called Hubby, he said he would but to verify that he could with the school because the school doesn't like last minute decisions on that. So, I called the secretary and asked her if it was ok, told her its kind of an emergency situation because I'm scared to let Lenny ride the bus today with the way his blood sugars are acting. She said its fine, just have him stop by the office to write a quick note stating Lenny would be a "walker" today. I said ok. Called Hubby back to let him know. Then called the nurse back to let her know, appearently the secretary had already told the nurse by the time I called back. I told the nurse "If my husband isnt there by 3:30, would you be able to do another quick blood sugar test just to give me an idea of where he stands, and call me back. She said she would.
I get a call back at 3:30pm on the nose. His blood sugar was 71. 40 minutes after eating snack he dropped another 65 points. I asked her to give him 2 glucose tabs.
On the way to my daughters dr appointment I checked his blood sugar in the car again at 4pm. He was 124. YAY!!
We wound up eating dinner late because of the dr appointment and traffic, which really had me worried. But, at 5:42pm his blood sugar was 129. WAHOO! For dinner, we went to McDonalds. He had a kids meal Hamburger and apples meal. No drink because the morons working there messed up our order... AGAIN! 4th consecutive time in the last 4 times we've been there!
They gave him a REGULAR coke instead of a DIET coke like we asked. Hubby said he even checked the screen to verify they put DIET on the order. So, needless to say, I called them and spoke to the manager!
I told the manager "Whoever you have working the drive through window seriously needs to be FIRED! The last FOUR TIMES in a row... FOUR CONSECUTIVE VISITS to your establishment, the person working the drive thru window has messed up my 5 year old, type 1 diabetic child's order. The last TWO times, she screwed up his drink. This time she gave him a REGULAR coke instead of a DIET coke like we requested. The last visit, she screwed up his meal as well as gave him REGULAR, SWEETENED iced tea, instead of UNSWEETENED iced tea." She proceeded to ask me if I had a receipt. I went searching through all the bags, pulled absolutely EVERYTHING out of those bags looking for a receipt. No receipt!
I said "No, she didnt give us a receipt... but she sure as hell gave us more than enough straws!" (yeah, she had 6 straws in the bag, plus 4 on our drink carrier!) She asked me to tell her what the order was and she would try to do some sort of a systems search to see if she could find the order. I told her, she did hear search, ironically, she couldnt find our order in the system. She said the only thing she could do, and will definitely do, is talk to both the workers that could have made the mistake, and stress the importance of correct orders, and explain to them that mistakes like this could severely harm a person with diabetes.
I said "Look. The last time I called and complained about this, my husband was already on his way down there to complain. You guys gave us 2 free kids meal tickets for our troubles. I don't give a crap about that. When you go talk to them, make damn sure you specify to them that this disgruntled customer specifically says "You are damn lucky I check my son's drinks before just handing them to him. Had I not done that, your mindless, unthoughtful mistake could have landed him in a hospital in a coma tonight. I assure you, if that were to happen, if it EVER happens, while my son is laid up in the hospital fighting for his life, my ass would be on the phone with a lawyer and suing someone!"
She said she understands my position, and would be doing the same thing in my position, bla bla bla, and said she would be sure to express the seriousness of their mistake. Am I feeling very confident about it? Um, no.
Anyway, after that explosion...
8pm snack time rolls around. Lenny's blood sugar was 71. Hubby gave him the normal snack (yogurt, hes been getting this same snack for MONTHS because it works so well for his overnight numbers), as well as a cheese stick to try to hold him through the night.
Midnight... 142! WAHOO! Did a 0 bolus (no insulin) just to keep the "check bg" alarm from going off throughout the night.
3am.. 107 bg. Not what I would call spectacular, but ok. Still expecting a low to show up either at 5am or 7am. Did another 0 bolus to make sure the pump would shut up during the night lol.
It is now 4am. I will be checking his sugar again in an hour to see where he stands.
I will update you all on his status tomorrow night. I do have a game plan for this if this decides to continue throughout the day tomorrow.
If you have any topic ideas in mind that you would like to see discussed here, please feel free to leave me a comment and let me know!
So, midnight rolled around last night and his blood sugar was 115. WOOHOO! GREAT! However, I still anticipated a low, but not until atleast 5am or breakfast time.
3am rolls around. 69. Sigh. Gave him 2 glucose tabs and rechecked at 3:30. He went up to 81.
I weighed the pros and cons on that one. Overnight, his endo's don't want him to be lower than 80. I let it go and rechecked him at 4:15am. 136 bg.
Oh yeah! Maybe we got this thing whipped!
Breakfast was at 7am and he had his usual breakfast that he almost always has. His blood sugar was 125 at that time. He was dosed at 7:15 am.
Again... YEAH! We're back on track!
Or so we thought.
8:45am I get a phone call from the school nurse. "I just wanted to call and let you know that Lenny fell in the hallway. He didn't hit his head or anything, but he seemed confused, so I checked his sugar. It was 187."
My first words...."thats not high enough an hour and a half after eating breakfast! Keep a very close eye on him for a low." I was on the phone with her till about 9:15 or 9:30. She said she has him sitting right next to her right now (in the classroom) and as of that moment, he seemed like he was fine. I said, ok, just watch for a low, because it sounds to me like hes going to crash.
10am snack time comes around. At about 10:20am I get a phone call. She said his blood sugar was 51 for snack, she gave him 4 glucose tabs, waited 15 minutes and rechecked him and he came up to 135. Ok, I never seen a jump like that after correcting a low then rechecking 15 mins later, but, I wont complain! She said she gave him a 16g carb snack (goldfish crackers) and dosed him for the snack carbs. Not a problem, worst case scenario he will be high at lunch.
Lunch time is at 12:15pm. By 12:20 I hadn't heard anything, so I called the school. I feel bad cuz I interrupted the lunch time (head nurse) nurse's lunch when I called, but I just had to check on him. She said his blood sugar before lunch was 230. I asked her if she had any idea about the activity level in the classroom this morning to see if that crash could have been caused by that. She said no, but they typically dont have much activity during that time... the teachers keep things pretty routine and structured, but, she said she'd see if she could find out and give me a call to let me know. There was no change in routine in the classroom.
So, then I get a phone call at 1:40pm... right before gym class. His blood sugar was 289. HMMM. Only a 59 point increase since lunch. Something's not right. I told her its not as high as it should be an hour and a half after lunch. He should have, at the very least, been in the 300s, if not 400s by then. I told her, again, watch for low symptoms. Actually, I BEGGED her to keep an extremely close eye on him during gym class. Gym class is 40 minutes long. I also asked her to call me back for every check there on after.
She called me back at 2:20pm, for his after gym class blood sugar check. He was 234. I said, well, that was a good 55 point drop. She asked me if he could go to recess because he was BEGGING to go LOL! I hesitantly said yes, go ahead, and begged again to keep close tabs on him. I told her, again, I'm expecting a crash again by the end of the day. Recess is 20 minutes long.
She called me back at 2:50pm for his before afternoon snack blood sugar reading. She said he was 136.
I told her he is most definitely going to crash by the time he gets home at 3:45pm-ish. She said she gave him the chocolate covered pretzels snacks (100 calorie snack pack... 16-20g carbs) already, I told her to give him the cheese stick I put in the diabetes back that morning. He WOOFED that down fast... she said it was like in 2 bites HAHA! I told her to go ahead and bolus for the snack carbs, that I was going to call my husband and see if he could pick Lenny up from school instead of putting him on the bus because I was scared he would have a severe crash on the bus, then I'd call her back to let her know. Hubby was already having to pick up our daughter from Head Start after he got off work, and should be able to just swing by and pick him up as well on his way back home. The school is a 2 minute drive from my house. Literally.
So, called Hubby, he said he would but to verify that he could with the school because the school doesn't like last minute decisions on that. So, I called the secretary and asked her if it was ok, told her its kind of an emergency situation because I'm scared to let Lenny ride the bus today with the way his blood sugars are acting. She said its fine, just have him stop by the office to write a quick note stating Lenny would be a "walker" today. I said ok. Called Hubby back to let him know. Then called the nurse back to let her know, appearently the secretary had already told the nurse by the time I called back. I told the nurse "If my husband isnt there by 3:30, would you be able to do another quick blood sugar test just to give me an idea of where he stands, and call me back. She said she would.
I get a call back at 3:30pm on the nose. His blood sugar was 71. 40 minutes after eating snack he dropped another 65 points. I asked her to give him 2 glucose tabs.
On the way to my daughters dr appointment I checked his blood sugar in the car again at 4pm. He was 124. YAY!!
We wound up eating dinner late because of the dr appointment and traffic, which really had me worried. But, at 5:42pm his blood sugar was 129. WAHOO! For dinner, we went to McDonalds. He had a kids meal Hamburger and apples meal. No drink because the morons working there messed up our order... AGAIN! 4th consecutive time in the last 4 times we've been there!
They gave him a REGULAR coke instead of a DIET coke like we asked. Hubby said he even checked the screen to verify they put DIET on the order. So, needless to say, I called them and spoke to the manager!
I told the manager "Whoever you have working the drive through window seriously needs to be FIRED! The last FOUR TIMES in a row... FOUR CONSECUTIVE VISITS to your establishment, the person working the drive thru window has messed up my 5 year old, type 1 diabetic child's order. The last TWO times, she screwed up his drink. This time she gave him a REGULAR coke instead of a DIET coke like we requested. The last visit, she screwed up his meal as well as gave him REGULAR, SWEETENED iced tea, instead of UNSWEETENED iced tea." She proceeded to ask me if I had a receipt. I went searching through all the bags, pulled absolutely EVERYTHING out of those bags looking for a receipt. No receipt!
I said "No, she didnt give us a receipt... but she sure as hell gave us more than enough straws!" (yeah, she had 6 straws in the bag, plus 4 on our drink carrier!) She asked me to tell her what the order was and she would try to do some sort of a systems search to see if she could find the order. I told her, she did hear search, ironically, she couldnt find our order in the system. She said the only thing she could do, and will definitely do, is talk to both the workers that could have made the mistake, and stress the importance of correct orders, and explain to them that mistakes like this could severely harm a person with diabetes.
I said "Look. The last time I called and complained about this, my husband was already on his way down there to complain. You guys gave us 2 free kids meal tickets for our troubles. I don't give a crap about that. When you go talk to them, make damn sure you specify to them that this disgruntled customer specifically says "You are damn lucky I check my son's drinks before just handing them to him. Had I not done that, your mindless, unthoughtful mistake could have landed him in a hospital in a coma tonight. I assure you, if that were to happen, if it EVER happens, while my son is laid up in the hospital fighting for his life, my ass would be on the phone with a lawyer and suing someone!"
She said she understands my position, and would be doing the same thing in my position, bla bla bla, and said she would be sure to express the seriousness of their mistake. Am I feeling very confident about it? Um, no.
Anyway, after that explosion...
8pm snack time rolls around. Lenny's blood sugar was 71. Hubby gave him the normal snack (yogurt, hes been getting this same snack for MONTHS because it works so well for his overnight numbers), as well as a cheese stick to try to hold him through the night.
Midnight... 142! WAHOO! Did a 0 bolus (no insulin) just to keep the "check bg" alarm from going off throughout the night.
3am.. 107 bg. Not what I would call spectacular, but ok. Still expecting a low to show up either at 5am or 7am. Did another 0 bolus to make sure the pump would shut up during the night lol.
It is now 4am. I will be checking his sugar again in an hour to see where he stands.
I will update you all on his status tomorrow night. I do have a game plan for this if this decides to continue throughout the day tomorrow.
If you have any topic ideas in mind that you would like to see discussed here, please feel free to leave me a comment and let me know!
Wednesday, October 6, 2010
Happy 2 Year LIVE-Aversary Lenny!!!!
Today marks the second year of Lenny's diagnosis!
As I sit here typing, I am reminicing. Thinking about everything this family has gone through since October 6, 2008. How stressful and scary that first year was. All of the accomplishments. All of the battles, won and lost. All of the frustrating days with highs, lows, and ketones. All of the wonderful days of perfect levels. The learning curve as we entered this adventure, and as we started a new adventure in January 2010 when he got his pump. The excitement in his eyes when Rufus came to live with us, and when Rufus got his pump 1 week before Lenny started on his very own. The learning curve with getting the pump. All of the happy moments, and the not so happy moments. All of the A1C results over the last 2 years.
When he was first diagnosed, I remember it like it was yesterday, they told me his blood sugar was 593. The urine ketone test came back and they said when they dipped it, it immediately turned brown. When they explained that that brown color meant he had very large ketones, and what ketones were I was in shock. They told me that had I waited just one more week (his check up was a week away), he would have probably been in a coma. They told me when they called Children's, they originally wanted the pediatrician to send him in an ambulance or Life Flight. The pediatrician told them it wasn't necessary because he was still very much concious, awake, and alert.
Honestly, I was in shock from the time I saw the 593 on the monitor right up till we got home to pack our bags to spend a week in the hospital. My mother in law was with us the day we took him to the pediatrician, she came in the room with us. I remember the nurse telling us what the blood sugar reading was, and my mother in law bursting into tears. I didn't cry, atleast not at this point. I think it is because I was still in shock, and because, to be quite honest, I had no idea what Type 1 Diabetes really was, what it consisted of doing to take care of my baby boy, how serious it could be, or how life threatening it could be. I had no idea that I could lose him at any given minute because of a low blood sugar, or high blood sugar and ketones. I had no idea.
The tears for me hit when Lenny, Hubby, and me were in the car, driving 2 hours to Pittsburgh. It hit me that Lenny's life was about to change. Big time!
In the hospital, I remember trying to stay strong, for Lenny. I didn't want him to see me cry for him. I didn't want him to be scared. Sometimes, though, it did get the best of me. I remember my husband and how emotional he got. It was a side of him I don't think I have ever seen before.
Today though.... today is a wonderful day.
The kids won't have school today, so, we will be doing some fun things. Mommy got most of her housework done early this week. So, I think today we will play some games, maybe go outside for a while, and have a special treat to celebrate his 2 year LIVE-aversary!
Why celebrate on the day of his anniversary of his diagnosis?
Because, I look at it just like a birthday.... a new beginning.
We celebrate birthdays because it is a celebration of the beginning of a new life, the childs birth.
Well, we celebrate the anniversary of his diagnosis because it, too, is a new beginning. It was a new beginning of his new life, a life with diabetes. We celebrate because we are celebrating the years that pass that, he has diabetes, but diabetes most certainly does not have him!
He does not let his diabetes get in the way of him being a normal child.
So, HATS OFF, Big Hugs, Lots of Kisses, to you Lenny! You make Mommy very, very proud!P.S. everyone... comments should now work. I think I figured out what the problem was, and have fixed it (I hope! LOL!) Please feel free to go back through posts and leave comments if you wish! Thank you for your patience!
Monday, October 4, 2010
Something Interesting I Wanted To Share!
This morning I decided to call Children's Hospital of Pittsburgh and talk with the nurses on call about finding an alternative location for Lenny's pump sites. After explaining to her that his butt is forming hard spots from using his butt all the time for site changes, and his blood sugars are running high because of it, as well as the incident that happened last night (which I will go into in a few minutes), she suggested I try the back of his arms. I also asked her about this cream that so many other mommies with diabetic kids have told me about that numbs the area.
She told me the name of a couple different creams on the market... but then, she told me about these wipes that also help with pain relief. They are called ReliOn Alcohol Swabs with Pain Relief.
She says its not supposed to be a strong feeling of numbness like some of the creams out there, but, unlike the creams, there is no 30-45 minute waiting period for it to work. You wipe the area, the alcohol in them disinfects it, wait till its try, the benzocaine numbs the area a little, then proceed with putting the site on.
She suggested trying that first, at least until it is time for his next appointment at the end of the month. So, we shall buy some and try it out. Hopefully this helps and will not freak him out so much the next time I try to put the site in a different area other than his butt.
As for the events of last night. When we came home, the kids played and ran around the house till bedtime, with the exception of eating bedtime snack. At bedtime snack his blood sugar was 67. Gave him ONE glucose tab, and his nightly ritual bedtime snack.... yogurt. After he ate and was dosed, the kids went back to running around the house like a mad man. I actually expected him to be on the low side for the midnight check. Midnight rolled around, his blood sugar was 315 at the first check. That didn't seem right, so I rechecked.... 323. Checked ketones, no ketones. Gave a correction and waited.
At 3am I rechecked him, figuring he'd come down. 404 at 3am. Checked ketones with the Precision Xtra Blood Ketone meter. It read 1.3 which means moderate ketones... almost large though. I figured since he had a drink of water before bed and still hadn't peed the bed, I would wake him up to go pee, to help prevent him peeing the bed. While we were at it, I checked urine ketones. They read between small and moderate. Hm, what a predicament! Which reading do you go with? I decided to go with what the Precision Xtra meter said, since blood readings are more accurate than urine. I gave him 0.5 units more than the meter recommended for the high, to cover the ketones, and administered it via syringe. Decided to do a site change at that point also (yep, site change at 3am, sigh).
After removing the old site, what do I see? A bad kink. In the photo above, you will see something hazy looking inside the red circle (sorry, did the best I could to get a good shot of it lol). For those of you who are not familiar with diabetes and pumps, or those of you who may be familiar with diabetes, but not yet on a pump, that little hazy looking thing in the red circle is the cannula. The cannula is the part of the site that remains under the skin. The way it works is when you tell the pump to inject X amount of insulin into the person, the insulin you request runs down a tube/line, into the cannula. From the cannula, it is then sent into the persons body. Sometimes the cannula can get kinked. Kinks are caused by various reasons. This particular kink tonight was due to the location of where the site was, was getting a hard spot. If you notice in the photo, the cannula is almost flat. This prevented him from getting the much needed insulin he needed, for several hours. In turn, it caused his blood sugars to rise after bedtime snack to 323, and because it still wasn't correct by 3am, caused his blood sugars to continue to climb despite the correction, and in turn, develop ketones.
I hope all of that makes a little sense. If you have any questions, please don't hesitate to leave a comment and ask!
After doing a correction at 3am via syringe, and doing a site change, by breakfast this morning, he crashed... hard. His blood sugar before breakfast was 51 at 7:15am. Gave him 2 glucose tabs (because I don't usually like to give him the full 4 before a meal or snack because normally when I do, he has a bad rebound high), rechecked him 20 minutes later. He only came up to 58, so, I gave him 4 oz milk and rechecked another 20 minutes later. He came up to 177 then, so I let him eat breakfast. I called him off school today because I didn't feel comfortable putting him on the school bus with an initial blood sugar of 51. I was afraid of him crashing on the school bus. I know he has an aid that gets on the bus, follows him around school, and rides the bus home with him, but, I figure it is better safe than sorry.
Now it is almost snack time. I will blog later on about how the rest of his day goes.
She told me the name of a couple different creams on the market... but then, she told me about these wipes that also help with pain relief. They are called ReliOn Alcohol Swabs with Pain Relief.
She suggested trying that first, at least until it is time for his next appointment at the end of the month. So, we shall buy some and try it out. Hopefully this helps and will not freak him out so much the next time I try to put the site in a different area other than his butt.
As for the events of last night. When we came home, the kids played and ran around the house till bedtime, with the exception of eating bedtime snack. At bedtime snack his blood sugar was 67. Gave him ONE glucose tab, and his nightly ritual bedtime snack.... yogurt. After he ate and was dosed, the kids went back to running around the house like a mad man. I actually expected him to be on the low side for the midnight check. Midnight rolled around, his blood sugar was 315 at the first check. That didn't seem right, so I rechecked.... 323. Checked ketones, no ketones. Gave a correction and waited.
At 3am I rechecked him, figuring he'd come down. 404 at 3am. Checked ketones with the Precision Xtra Blood Ketone meter. It read 1.3 which means moderate ketones... almost large though. I figured since he had a drink of water before bed and still hadn't peed the bed, I would wake him up to go pee, to help prevent him peeing the bed. While we were at it, I checked urine ketones. They read between small and moderate. Hm, what a predicament! Which reading do you go with? I decided to go with what the Precision Xtra meter said, since blood readings are more accurate than urine. I gave him 0.5 units more than the meter recommended for the high, to cover the ketones, and administered it via syringe. Decided to do a site change at that point also (yep, site change at 3am, sigh).
I hope all of that makes a little sense. If you have any questions, please don't hesitate to leave a comment and ask!
After doing a correction at 3am via syringe, and doing a site change, by breakfast this morning, he crashed... hard. His blood sugar before breakfast was 51 at 7:15am. Gave him 2 glucose tabs (because I don't usually like to give him the full 4 before a meal or snack because normally when I do, he has a bad rebound high), rechecked him 20 minutes later. He only came up to 58, so, I gave him 4 oz milk and rechecked another 20 minutes later. He came up to 177 then, so I let him eat breakfast. I called him off school today because I didn't feel comfortable putting him on the school bus with an initial blood sugar of 51. I was afraid of him crashing on the school bus. I know he has an aid that gets on the bus, follows him around school, and rides the bus home with him, but, I figure it is better safe than sorry.
Now it is almost snack time. I will blog later on about how the rest of his day goes.
Thursday, September 30, 2010
Think I've figured part of it out..
Well, I think I figured out part of the problem with all the 300s on Wednesday (See previous post).
When I got ready to fill the cannula for the new site, I decided to look over some things. I unlocked his pump, and noticed that there was only 26 units in it. Hm. Wonder why. When you do a site change for Lenny, you should fill the cartridge up enough to last him for 2 days. His TDD (Total Daily Dose) for the most part hovers around 15-16 units per day. Therefore, she should have filled it at the minimum of 40 units. I typically fill it to about 80 units, just in case I am not able to do a site change every 2 days, or if he gets sick or whatever, there is more than enough insulin in there to remove that worry from my mind. Anyway, I decided to go through the history, checked how much insulin was given at each meal/snack throughout the day. Hm, he was given 2.20 units at morning snack and 3.65 units at lunch... why hasnt he come down with all that insulin plus a site change? I also decided to look at the TTD for today. At 4:30 he had already been given 10 units, this is bolus and basal total.
I decided to sit down and do some calculations about an hour ago. 10u TDD just did not seem right to me. Seemed too high knowing the site change was done at 10am that morning. His TDD from 12am to 4:30ish pm, by my calculations, should have been 10.6625. His TDD from 10am (which is when she said she was doing the site change) to 4:30ish pm, according to my calculations, should have been 8.2875.
So, if she did the site change correctly, how was there 10u TDD between 10am to 4:30pm? How were there such HUGE air bubbles in the tubing? How is it that when I look at the prime/rewind setting, all boxes are completed, yet the TDD shown in the pump doesnt match up with the calculations I came up with that it should have been for 10am through 4:30pm? And, more importantly, why did his numbers not come down much after her site change?
My conclusion...
It wasn't done correctly.
When I got ready to fill the cannula for the new site, I decided to look over some things. I unlocked his pump, and noticed that there was only 26 units in it. Hm. Wonder why. When you do a site change for Lenny, you should fill the cartridge up enough to last him for 2 days. His TDD (Total Daily Dose) for the most part hovers around 15-16 units per day. Therefore, she should have filled it at the minimum of 40 units. I typically fill it to about 80 units, just in case I am not able to do a site change every 2 days, or if he gets sick or whatever, there is more than enough insulin in there to remove that worry from my mind. Anyway, I decided to go through the history, checked how much insulin was given at each meal/snack throughout the day. Hm, he was given 2.20 units at morning snack and 3.65 units at lunch... why hasnt he come down with all that insulin plus a site change? I also decided to look at the TTD for today. At 4:30 he had already been given 10 units, this is bolus and basal total.
I decided to sit down and do some calculations about an hour ago. 10u TDD just did not seem right to me. Seemed too high knowing the site change was done at 10am that morning. His TDD from 12am to 4:30ish pm, by my calculations, should have been 10.6625. His TDD from 10am (which is when she said she was doing the site change) to 4:30ish pm, according to my calculations, should have been 8.2875.
So, if she did the site change correctly, how was there 10u TDD between 10am to 4:30pm? How were there such HUGE air bubbles in the tubing? How is it that when I look at the prime/rewind setting, all boxes are completed, yet the TDD shown in the pump doesnt match up with the calculations I came up with that it should have been for 10am through 4:30pm? And, more importantly, why did his numbers not come down much after her site change?
My conclusion...
It wasn't done correctly.
What a day..
Yeah, today wasn't such a good day. Mama's head just wasn't with it at all. I was making mistakes left and right, couldn't concentrate or focus on much of anything. Not sure what got into me, but boy, it was bad!
The day started off with probably one of the biggest mistakes I've made in a long time. Somehow, I managed to forget to dose Lenny for breakfast. He went from 222 to 498 between breakfast and 10am morning snack.
UGH! I felt like the worst mother in the world. Poor Lenny. I can't imagine how he must have been feeling! The LPN the school outsourced to cover the first two hours of the school day, called me at 10 to tell me his blood sugar, no ketones, and she checked the site and thought it felt hard and wanted to do a site change. I said, ok, I can agree to that. She wanted to put the new site on his belly. I told her, "well, if you feel comfortable doing that, then fine, you can try it, however, I've talked with the endo on a few occations about using an alternative site location. She and I both agreed that he just doesn't have enough fat anywhere else to put a site." So she put the new site on the other butt cheek.
After that, Hubby came home, and we took Mackenzie to her dentist appointment. This little girl has been in so much pain with her tooth, for atleast the last month. For a month solid, I've been giving her tylenol, motrin, and baby ambesol atleast daily, sometimes more. This weekend she was up till almost 3am almost every night because of a toothache. She missed school on Monday because of a toothache. I tried so hard last week to get her seen by the previous dentist we were taking the kids to, but they kept telling me "we don't have any time spots open" Please keep in mind, she was already seen once this summer for a check-up. At that appointment, they told me she had a bad cavity and wanted to schedule her for an appointment for a filling. That was back in july! They scheduled her next appointment in mid-october! If he knew then that this cavity was bad, why didn't they get her in sooner for the filling?
So, anyway, we changed dental providers with the insurance and had her seen at Aspen Dental in Johnstown, PA. These are dentists my husband and I have used in the past, know, and trust. They are truely wonderful!
So, what does the dentist tell us? They say "she has 3 teeth that are pretty bad. The one she is complaining about right now is an important tooth, too. I am going to start her on an antibiotic and refer her to a pediodontist". He explained to us that the reason this tooth is so important is because, while it is a molar, she is still due to get a 6 year molar yet. If he were to pull this molar out now, then what would happen is when her 6 year molar comes in, it would overlap where this one is, and crowd the area. In turn, causing a lot of pain and complications later down the line when the permenant tooth for this molar does come in. It made complete sense to me (though, I may not be explaining it well to you lol). He said what he is going to do is refer us to a pediodontist and let him decide whether to pull it or to do another proceedure (which I can not recall the name of it) that is basically similar to a root canal, but for children. He said he has done these proceedures before, however, not on someone as young as she is so he would feel more comfortable with a pediodontist making that call and doing that proceedure if he deems fit.
Hearing this news, infuriated both myself, and Hubby. While, yes, it may be part our fault for her getting a cavity, and even for allowing it to get this bad. BUT, why did this previous dentist allow this cavity to go on for so long (3 months), knowing it was so bad? Why didn't he put her on an antibiotic then? Why didn't he refer us to a pediodontist then, unless it just continued to get worse and worse since the July visit dispite our efforts to control the issue? (Since the July visit, we've increased the number of times per day she brushes her teeth, to the point that sometimes she was brushing them 5 times a day, after every meal and snack). The previous doctor was quick to reem me out for allowing my 3 year old daughter to get a cavity, but not so quick to take care of the issue promptly before it got any worse.
After that, we came home and waited for Lenny to get home from school. Lenny and his aid's grandson have seemed to have become really good friends! So much so, her grandson didn't want to leave my house, he wanted to play outside with Lenny still LOL!
When he came home, I started to look at Lenny's BG's. Remember when I said earlier that the AM LPN nurse at the school changed the site? Well, that site change only caused his BG's to drop about 150 points, which is odd for Lenny considering usually when I do a site change for him, he crashes. Although, as of lately, if I do a site change before school, its the complete opposite. Must be a difference in activity level there.
Anyway, He remained in the 300s through afternoon snack. After the aid and her grandson left, I talked things over with my Hubby. We noticed that one side of his butt did in fact feel a little hard, and decided, since his BG's were so high all day long, we would do another site change. This time, trying a different site location. We decided to try his leg.
Lenny fought us tooth and nail over this. He is so used to having his butt used for sites! He kept screaming "No! My butt, my butt, use my butt!" and moving away from us. When we were finally able to calm him down somewhat (more like hold him down), we did it. He screamed at the top of his lungs. Cried it hurt it hurt. We had it stay there for not even 2 minutes, thinking he would settle down after it is there for a bit... but he didn't. I decided to pull it.
As soon as I pulled it out, his leg bled. A lot. So much so, we had to get a paper towel and put pressure on it to get it to stop, then put a band-aid on it. He was crying the whole time... as was mommy. It hurt so much seeing him in pain, knowing I caused that pain. Felt the same kind of pain for him that I felt when he was first diagnosed and I had to give him his first injection at Children's Hospital of Pittsburgh.
At that point, we were left with the decision...
Do we try another site location, or go ahead and put it in his butt again?
We put it in his butt again, this time, further to the side and lower, in an area we don't typically use because I've always felt it was too close to his hip. After fighting him to get him to lay flat on the floor (this is how we do his sites, have him lay flat on the floor so he doesn't tense his muscles much and can relax. Works well for us, better for us than him standing or bending over), we got it in. He didn't want to lay completely flat on the floor at first because he said it hurt his leg.
After all this commotion, it was finally dinner time. Thank God for freezer bag meals at Walmart, that's all I have to say!
Check his BG for dinner... 93. Gotta love how activity plays so well on his blood sugar! Afternoon snack he was 318, then after all the playing outside he did with his aid's grandson, plus running around the house while Hubby and I made some diabetes related decisions, he dropped to 93!
The day started off with probably one of the biggest mistakes I've made in a long time. Somehow, I managed to forget to dose Lenny for breakfast. He went from 222 to 498 between breakfast and 10am morning snack.
UGH! I felt like the worst mother in the world. Poor Lenny. I can't imagine how he must have been feeling! The LPN the school outsourced to cover the first two hours of the school day, called me at 10 to tell me his blood sugar, no ketones, and she checked the site and thought it felt hard and wanted to do a site change. I said, ok, I can agree to that. She wanted to put the new site on his belly. I told her, "well, if you feel comfortable doing that, then fine, you can try it, however, I've talked with the endo on a few occations about using an alternative site location. She and I both agreed that he just doesn't have enough fat anywhere else to put a site." So she put the new site on the other butt cheek.
After that, Hubby came home, and we took Mackenzie to her dentist appointment. This little girl has been in so much pain with her tooth, for atleast the last month. For a month solid, I've been giving her tylenol, motrin, and baby ambesol atleast daily, sometimes more. This weekend she was up till almost 3am almost every night because of a toothache. She missed school on Monday because of a toothache. I tried so hard last week to get her seen by the previous dentist we were taking the kids to, but they kept telling me "we don't have any time spots open" Please keep in mind, she was already seen once this summer for a check-up. At that appointment, they told me she had a bad cavity and wanted to schedule her for an appointment for a filling. That was back in july! They scheduled her next appointment in mid-october! If he knew then that this cavity was bad, why didn't they get her in sooner for the filling?
So, anyway, we changed dental providers with the insurance and had her seen at Aspen Dental in Johnstown, PA. These are dentists my husband and I have used in the past, know, and trust. They are truely wonderful!
So, what does the dentist tell us? They say "she has 3 teeth that are pretty bad. The one she is complaining about right now is an important tooth, too. I am going to start her on an antibiotic and refer her to a pediodontist". He explained to us that the reason this tooth is so important is because, while it is a molar, she is still due to get a 6 year molar yet. If he were to pull this molar out now, then what would happen is when her 6 year molar comes in, it would overlap where this one is, and crowd the area. In turn, causing a lot of pain and complications later down the line when the permenant tooth for this molar does come in. It made complete sense to me (though, I may not be explaining it well to you lol). He said what he is going to do is refer us to a pediodontist and let him decide whether to pull it or to do another proceedure (which I can not recall the name of it) that is basically similar to a root canal, but for children. He said he has done these proceedures before, however, not on someone as young as she is so he would feel more comfortable with a pediodontist making that call and doing that proceedure if he deems fit.
Hearing this news, infuriated both myself, and Hubby. While, yes, it may be part our fault for her getting a cavity, and even for allowing it to get this bad. BUT, why did this previous dentist allow this cavity to go on for so long (3 months), knowing it was so bad? Why didn't he put her on an antibiotic then? Why didn't he refer us to a pediodontist then, unless it just continued to get worse and worse since the July visit dispite our efforts to control the issue? (Since the July visit, we've increased the number of times per day she brushes her teeth, to the point that sometimes she was brushing them 5 times a day, after every meal and snack). The previous doctor was quick to reem me out for allowing my 3 year old daughter to get a cavity, but not so quick to take care of the issue promptly before it got any worse.
After that, we came home and waited for Lenny to get home from school. Lenny and his aid's grandson have seemed to have become really good friends! So much so, her grandson didn't want to leave my house, he wanted to play outside with Lenny still LOL!
When he came home, I started to look at Lenny's BG's. Remember when I said earlier that the AM LPN nurse at the school changed the site? Well, that site change only caused his BG's to drop about 150 points, which is odd for Lenny considering usually when I do a site change for him, he crashes. Although, as of lately, if I do a site change before school, its the complete opposite. Must be a difference in activity level there.
Anyway, He remained in the 300s through afternoon snack. After the aid and her grandson left, I talked things over with my Hubby. We noticed that one side of his butt did in fact feel a little hard, and decided, since his BG's were so high all day long, we would do another site change. This time, trying a different site location. We decided to try his leg.
Lenny fought us tooth and nail over this. He is so used to having his butt used for sites! He kept screaming "No! My butt, my butt, use my butt!" and moving away from us. When we were finally able to calm him down somewhat (more like hold him down), we did it. He screamed at the top of his lungs. Cried it hurt it hurt. We had it stay there for not even 2 minutes, thinking he would settle down after it is there for a bit... but he didn't. I decided to pull it.
As soon as I pulled it out, his leg bled. A lot. So much so, we had to get a paper towel and put pressure on it to get it to stop, then put a band-aid on it. He was crying the whole time... as was mommy. It hurt so much seeing him in pain, knowing I caused that pain. Felt the same kind of pain for him that I felt when he was first diagnosed and I had to give him his first injection at Children's Hospital of Pittsburgh.
At that point, we were left with the decision...
Do we try another site location, or go ahead and put it in his butt again?
We put it in his butt again, this time, further to the side and lower, in an area we don't typically use because I've always felt it was too close to his hip. After fighting him to get him to lay flat on the floor (this is how we do his sites, have him lay flat on the floor so he doesn't tense his muscles much and can relax. Works well for us, better for us than him standing or bending over), we got it in. He didn't want to lay completely flat on the floor at first because he said it hurt his leg.
After all this commotion, it was finally dinner time. Thank God for freezer bag meals at Walmart, that's all I have to say!
Check his BG for dinner... 93. Gotta love how activity plays so well on his blood sugar! Afternoon snack he was 318, then after all the playing outside he did with his aid's grandson, plus running around the house while Hubby and I made some diabetes related decisions, he dropped to 93!
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