Thursday, March 31, 2011
One Year
Tomorrow is one year. It's been a blur, and I've just spent some time reading over some of my blog entries. It's like it's happened to someone else - I really feel like I was reading someone else's thoughts and feelings... Unfortunately, they were MY thoughts and feelings. I'm quite glad that I've written it down. Reflection is a powerful thing. I'm very thankful for a group of women who listened to me talk about diabetes and Jimmy's one year anniversary tonight. They've been there for me for a few years now, and I can't imagine my life without them. Even when I said, "Enough about me, what's happening with all of you?" No one chimed in. I know there is so much going on in all of their lives (who ISN'T going through something?) and yet, they just listened, supported, and were genuinely interested in Jimmy's care and my well being. Please say a prayer for Jimmy and pray that diabetes will one day be a thing of the past. Peace, June
Tuesday, March 29, 2011
Insulin Pump Site change
Here's how we change Jimmy's insulin pump site. It gets changed every 2 days. Found the video on youtube at this link: http://www.youtube.com/watch?v=WNcaUtZxKJU So, thanks to the one who posted it - good work!! Of course, Jimmy is 6, and we do it for him... but Jenna is learning, and Jimmy will do it one day himself...
Peace, June
Friday, March 25, 2011
a cure...
Jimmy's friend asked him if he will always have diabetes. Jimmy said, "No, because if people donate enough money, they will find a cure." Out of the mouths of babes... from his mouth to God's ears!!!
Saturday, March 19, 2011
Jenna
I've often referred to Jenna as, "Jimmy's Other Mother". She was 5 when he was born, so she was right by my side for all that needed to be done. From the minute he was born - bottles, diapers, outfits, kisses, books, etc... You name it, she was there! She helped him learn to walk, learn his colors, numbers & letters, taught him how to write his name, how to play hide and seek, and even helped him learn how to swim!Jenna and I even studied the art of giving a successful "time out" together so that when Jimmy needed one, he would get one. Super Nanny was instrumental in that department. Jimmy is tough - or is it strong willed - or stubborn - I think I actually need a word that combines all 3 of those. It took us MONTHS in order to get Jimmy to stay on a time out for the appropriate number of minutes. If you've ever seen the show, you know where the kids BOLT off the "naughty spot" and it takes the parents close to an hour to get the kid the complete the time??? It took double that sometimes.They can be the best of buddies sometimes, and then I'll hear her say, "Jimmy, please find something else to do or you will get a time out!!!! ONE........................ TWO......................." And then you'll hear him say, "OK, I'll stop!!!" She goes back and forth between sister and mothering him. They make a pretty good team together!Sometimes, she can get him to do things I can't get him to do... today for example. My niece came down to do a project for her HS class. Her assignment was to research a childhood disease and tell the class about it. So, for part of her project, she wanted to present how Jimmy takes his insulin with the pump vs. how her brother takes insulin with shots. Her plan was to video them both and incorporate the videos into her project.One problem: Jimmy was NOT going to be video taped. He was being - ummm - still looking for that combination word for how he gets - well... he was being, let's just say, JIMMY!!!Here comes Jenna to the rescue. She came over and said, "Hey Jimmy, let's make funny faces in to the video and watch ourselves!" And that was it. He snapped out of JIMMY mode and they had 2 minutes of fun with the camera and we were able to get the project done! He wasn't in a perfect mood, but - she got him to do what my niece and I couldn't do!!! Here's the video.....
Not the best, but he got through it, and it was all thanks to Jenna!!!!!!!!!!!!!!!!!!!
She helps with Jimmy so very much - before the pump, she was even able to give him his insulin shots - at 10 years old! Now, she's 11 and helps so much with his pump. She's learned how to count Jimmy's carbs and how to manage some of his diabetes "stuff". I'll look for a video of them in action together and add it another time - Just wanted to get this down while I had a minute. (And the reason I had a minute is because Jenna took Jimmy outside to make sure he got his exercise - they're playing basketball right now!!!) She's really the best!!!
Peace,
June
Tuesday, March 15, 2011
tooth fairy!!
Jimmy has (or should I say had) 5 teeth on the bottom row in between the 2 pointy teeth where everyone else on the planet has just 4.
Sunday, he lost the 5th one!!!
A little before midnight that night, I was awakened to the sound of him whispering... He was talking in his sleep and it sounded like he was having a conversation with someone. As I listened from my room, I heard him say in such a cute little raspy whisper,
"Come over here, so you can look at it closer!"
I swear there is a real tooth fairy!!!
Peace,
June
Sunday, he lost the 5th one!!!
A little before midnight that night, I was awakened to the sound of him whispering... He was talking in his sleep and it sounded like he was having a conversation with someone. As I listened from my room, I heard him say in such a cute little raspy whisper,
"Come over here, so you can look at it closer!"
I swear there is a real tooth fairy!!!
Peace,
June
Saturday, March 12, 2011
Almost one year...
They told me that after a year that I'd have the hang of life with Jimmy and diabetes. I don't know how I feel about that... hang of it? just when I think I have the hang of it, something changes!!!
-growth spurt
-illness
-rainy days
-a lot of exercise
-lack of exercise
-stress
-simple carb foods
-glitch in the pump site
-glitch in the tubing
It seems like the wind blows and there are changes and then I have to "get the hang of it" all over again.
Here's the latest blowing of the wind...
He's dropping, or should I say plummeting, at school, and then he's going high all evening. Why??? I don't know. Here's my latest instructions from the doctor:
I am not sure why Jimmy is dropping in school. He is actually on very little insulin for his size. He appears to be lower during school and then rise later that night. The rise and falls are also pretty quick. Some of the rises my be rebounds from lows though. I don’t want to lower his insulin to carb ratio anymore than it is already, so lets lower his basal during the school day. We can go from 10am – 3 pm at 0.25. This should help. The sensor will also help see what is going on. Also always try to give some insulin prior to meals to help better match up insulin and food doses. The only way to tell If he needs less basal would be to do a basal test…
feed him breakfast and cover foods and test him in 3 hours.
If the number is between 100-200 start the test
Do not give any food or insulin during this time
skip lunch and snacks… no food until 3pm
If he goes low, treat the low blood sugar and stop the test.
He should be able to maintain his blood sugar between this time. If not, then basal needs to be changed
Suggested dose changes
12am 0.225
3am 0.15
7am 0.325
10am 0.25
3pm 0.325
There it is. Anyone care to translate??? How am I supposed to NOT feed him from morning on???
The Molly Center thinks I'm doing great with the managing of his diabetes and the pump.
I feel like I know nothing.
Someone asked me recently just what I have to do for Jimmy... Here's a list of things that have to be done to manage diabetes:
-12 a.m. testing, giving a bolus if needed (correcting a high blood sugar), or waking him up to make him drink juice if he's low (the cake gel is a mess and just dribbles out of his mouth.)
-3 a.m. testing (same as above if necessary)
-changing his insulin pump site every 2 days (can take up to an hour if he's not in the mood, which is the usual case).
-uploading his pump information to the carelink site (takes about 20 minutes, and I usually do it while he's in the shower since his pump is off at that time - but that doesn't include interpreting the data... see below)
-trying to interpret his carelink information -see older post about the reports carelink generates - it's like reading top secret encoded scattergram type documents. I study them to try to find out what steps to take to fix the trends he's having - but I still have to contact the Molly Center for the final word...
-making sure his supplies are up to date - which reminds me, he needs more insulin viles
-daily communication - even several times a day - with his wonderful school nurse to figure out a course of action. Even though the pump does the math for us, it's not simple... there's a human factor involved. Less insulin if he's going to be active, more insulin if it's a rainy day and they're going to be inside and inactive all day. Trying to compensate for the lows he has. And when we think we have it, and we think the next reading will be perfect, his blood glucose number does something totally opposite of what we think it's going to do... You know the expression "it takes a village" well, it can't be just one person monitoring this - I thank God for Jimmy's school nurse and how she helps me manage his diabetes.
-counting carbs. not as easy as it sounds. Every time something goes in his mouth, I have to determine how much and how many carbs. I know it's 30 carbs for a regular sized banana - then what if he doesn't eat the last 2 bites??? If it's 22 carbs for 15 pretzels, what if he eats 22 pretzels - or better yet, what if he forgot to stop at 15 pretzels and I didn't notice him going back for more??? not to mention the difference between complex and simple carbohydrates...
-putting up with the whims of a 6 year old. one minute he tests himself with out incident, and the next minute he hates testing and throws the tester across the room. I still remember the darkness of the closet that first few weeks of his diagnosis when I had to search for him and finally found him in his safe place (they both used to play in my closet, so he was always happy there...) He doesn't cry about it anymore, but he still gets angry and hates testing and getting his new pump site sometimes...
-managing his appointments - of which there are MANY - every 4 months to the endocrinologist, pediatric opthomologist, pediatrician, dentist, pediatric dermatologist, neurosurgeon, support groups, pump classes, etc...
-Molly Center communication - just about weekly - to identify the trends and make modifications
That's all I can think of at the moment...
Then there's life in general - full time work, family, house, diabetes - doesn't leave time for much else...
So thankful that I have wonderful angels helping me to help Jimmy. Maybe - just maybe - I'll get the hang of it one day.
Peace,
June
-growth spurt
-illness
-rainy days
-a lot of exercise
-lack of exercise
-stress
-simple carb foods
-glitch in the pump site
-glitch in the tubing
It seems like the wind blows and there are changes and then I have to "get the hang of it" all over again.
Here's the latest blowing of the wind...
He's dropping, or should I say plummeting, at school, and then he's going high all evening. Why??? I don't know. Here's my latest instructions from the doctor:
I am not sure why Jimmy is dropping in school. He is actually on very little insulin for his size. He appears to be lower during school and then rise later that night. The rise and falls are also pretty quick. Some of the rises my be rebounds from lows though. I don’t want to lower his insulin to carb ratio anymore than it is already, so lets lower his basal during the school day. We can go from 10am – 3 pm at 0.25. This should help. The sensor will also help see what is going on. Also always try to give some insulin prior to meals to help better match up insulin and food doses. The only way to tell If he needs less basal would be to do a basal test…
feed him breakfast and cover foods and test him in 3 hours.
If the number is between 100-200 start the test
Do not give any food or insulin during this time
skip lunch and snacks… no food until 3pm
If he goes low, treat the low blood sugar and stop the test.
He should be able to maintain his blood sugar between this time. If not, then basal needs to be changed
Suggested dose changes
12am 0.225
3am 0.15
7am 0.325
10am 0.25
3pm 0.325
There it is. Anyone care to translate??? How am I supposed to NOT feed him from morning on???
The Molly Center thinks I'm doing great with the managing of his diabetes and the pump.
I feel like I know nothing.
Someone asked me recently just what I have to do for Jimmy... Here's a list of things that have to be done to manage diabetes:
-12 a.m. testing, giving a bolus if needed (correcting a high blood sugar), or waking him up to make him drink juice if he's low (the cake gel is a mess and just dribbles out of his mouth.)
-3 a.m. testing (same as above if necessary)
-changing his insulin pump site every 2 days (can take up to an hour if he's not in the mood, which is the usual case).
-uploading his pump information to the carelink site (takes about 20 minutes, and I usually do it while he's in the shower since his pump is off at that time - but that doesn't include interpreting the data... see below)
-trying to interpret his carelink information -see older post about the reports carelink generates - it's like reading top secret encoded scattergram type documents. I study them to try to find out what steps to take to fix the trends he's having - but I still have to contact the Molly Center for the final word...
-making sure his supplies are up to date - which reminds me, he needs more insulin viles
-daily communication - even several times a day - with his wonderful school nurse to figure out a course of action. Even though the pump does the math for us, it's not simple... there's a human factor involved. Less insulin if he's going to be active, more insulin if it's a rainy day and they're going to be inside and inactive all day. Trying to compensate for the lows he has. And when we think we have it, and we think the next reading will be perfect, his blood glucose number does something totally opposite of what we think it's going to do... You know the expression "it takes a village" well, it can't be just one person monitoring this - I thank God for Jimmy's school nurse and how she helps me manage his diabetes.
-counting carbs. not as easy as it sounds. Every time something goes in his mouth, I have to determine how much and how many carbs. I know it's 30 carbs for a regular sized banana - then what if he doesn't eat the last 2 bites??? If it's 22 carbs for 15 pretzels, what if he eats 22 pretzels - or better yet, what if he forgot to stop at 15 pretzels and I didn't notice him going back for more??? not to mention the difference between complex and simple carbohydrates...
-putting up with the whims of a 6 year old. one minute he tests himself with out incident, and the next minute he hates testing and throws the tester across the room. I still remember the darkness of the closet that first few weeks of his diagnosis when I had to search for him and finally found him in his safe place (they both used to play in my closet, so he was always happy there...) He doesn't cry about it anymore, but he still gets angry and hates testing and getting his new pump site sometimes...
-managing his appointments - of which there are MANY - every 4 months to the endocrinologist, pediatric opthomologist, pediatrician, dentist, pediatric dermatologist, neurosurgeon, support groups, pump classes, etc...
-Molly Center communication - just about weekly - to identify the trends and make modifications
That's all I can think of at the moment...
Then there's life in general - full time work, family, house, diabetes - doesn't leave time for much else...
So thankful that I have wonderful angels helping me to help Jimmy. Maybe - just maybe - I'll get the hang of it one day.
Peace,
June
Thursday, March 3, 2011
eye doctor visit
one word: Phew! His eyes are just about perfect!!!
Jenna had amblyopia and was diagnosed at 4. Her brain wasn't computing images viewed by her right eye - it was very farsighted, had a astigmatism, and had something called asymotropia (where the images sent to the brain came in sort of skewed)... all 3 resulted in the brain deciding not to use the images coming from that eye anymore. It was shutting down. Since we caught it at the age of 4, it was "fixable." Had it not been caught by the age of 6, it would have been very hard to correct... So, thanks to the book, "Big Bird Goes to the Doctor", we realized that Jenna couldn't see well out of her right eye. A trip to the school nurse where I used to work in Wayne confirmed that we needed to get her to a Pediatric Opthamologist immediately. Otherwise, it wouldn't have been caught until she had a "separate eye exam" which doesn't happen usually until 1st grade - where it would have been much harder...
After over a year of patching her LEFT eye (to strengthen her right eye), and 6 years of glasses to maintain the strength she gained in that eye, she NO LONGER NEEDS GLASSES!!!!! Evidently, how your eyes are at 10 with this condition, is how your eyes are going to be. Pretty good, huh? Although, she was so very cute with her glasses at such a young age!!!
So, since she had eye issues, they suggested we take Jimmy to the Pediatric Opthamologist beginning at the age of 2. And now with Type 1 diabetes, it's imperative that he have regualr eye dr. visits...
He's always been extremely light sensitive - so sensitive that it would cause him to close his eyes or look down, wince, cry, grab my sunglasses, etc... The doctor has always said that it will get better with age... but that some people are just wired that way. I asked him again today, and he repeated the same thing.
Jimmy went through the entire exam (for the first time while sitting BY HIMSELF on the chair (in the past, he always needed to sit on my lap!) It went well, but the dr. needed to use the dreaded drops to get a better look... Jenna and I gasped... would this mean glasses??? what more could this kid endure???
So... dilation of the eyes complete, and now time for the LIGHT IN THE EYES TO LOOK INSIDE... YIKES!!! He clenched his eyes tight, squirmed in his seat, and used his hands to thwart the doctor's light away... luckily, JImmy failed!! The doctor was able to catch a glimpse of what he needed to see, and Jimmy's eyes are PERFECT!!!
We talked at length about what to expect as far as Jimmy's eyes go... He felt strongly, that, the better we take care of Jimmy now, and the better control he has over his diabetes growing up, the better his eyes will have the opportunity to be healthy through his life.
We're on the clock. God, please help me kick the daylights out of highs and lows. He's 6. He has NO idea of how to care for himself. It's on us. not him.
We're on it. Please pray for the strength for us to keep on it.
Peace,
June
Jenna had amblyopia and was diagnosed at 4. Her brain wasn't computing images viewed by her right eye - it was very farsighted, had a astigmatism, and had something called asymotropia (where the images sent to the brain came in sort of skewed)... all 3 resulted in the brain deciding not to use the images coming from that eye anymore. It was shutting down. Since we caught it at the age of 4, it was "fixable." Had it not been caught by the age of 6, it would have been very hard to correct... So, thanks to the book, "Big Bird Goes to the Doctor", we realized that Jenna couldn't see well out of her right eye. A trip to the school nurse where I used to work in Wayne confirmed that we needed to get her to a Pediatric Opthamologist immediately. Otherwise, it wouldn't have been caught until she had a "separate eye exam" which doesn't happen usually until 1st grade - where it would have been much harder...
After over a year of patching her LEFT eye (to strengthen her right eye), and 6 years of glasses to maintain the strength she gained in that eye, she NO LONGER NEEDS GLASSES!!!!! Evidently, how your eyes are at 10 with this condition, is how your eyes are going to be. Pretty good, huh? Although, she was so very cute with her glasses at such a young age!!!
So, since she had eye issues, they suggested we take Jimmy to the Pediatric Opthamologist beginning at the age of 2. And now with Type 1 diabetes, it's imperative that he have regualr eye dr. visits...
He's always been extremely light sensitive - so sensitive that it would cause him to close his eyes or look down, wince, cry, grab my sunglasses, etc... The doctor has always said that it will get better with age... but that some people are just wired that way. I asked him again today, and he repeated the same thing.
Jimmy went through the entire exam (for the first time while sitting BY HIMSELF on the chair (in the past, he always needed to sit on my lap!) It went well, but the dr. needed to use the dreaded drops to get a better look... Jenna and I gasped... would this mean glasses??? what more could this kid endure???
So... dilation of the eyes complete, and now time for the LIGHT IN THE EYES TO LOOK INSIDE... YIKES!!! He clenched his eyes tight, squirmed in his seat, and used his hands to thwart the doctor's light away... luckily, JImmy failed!! The doctor was able to catch a glimpse of what he needed to see, and Jimmy's eyes are PERFECT!!!
We talked at length about what to expect as far as Jimmy's eyes go... He felt strongly, that, the better we take care of Jimmy now, and the better control he has over his diabetes growing up, the better his eyes will have the opportunity to be healthy through his life.
We're on the clock. God, please help me kick the daylights out of highs and lows. He's 6. He has NO idea of how to care for himself. It's on us. not him.
We're on it. Please pray for the strength for us to keep on it.
Peace,
June
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