You know when you go in to check on the lil ones, and they're almost asleep? well, that's what all of us do... no matter what time of the night it is, that's what we do - we tuck them in. right?
Right.
Well, they expect that it's a comforting, loving, soothing, and motherly time of night...
For most kids, that would be a correct summation of the feeling of the night.
For Jimmy, it's not quite so.
Tonight, I waited until Jimmy was asleep until I changed his site. It back-fired.
I revealed the place I would like to have placed the new site (on his lower belly) and he stayed sound asleep.
I wiped the site clean with an alcohol wipe. He remained sound asleep.
I placed the site inserter on the site, and he remained asleep.
I inserted the site. He fussed, rolled over, and before I knew it happened, he had ripped out the new stite.
Poor kid. There he was sound asleep, and he was bleeding from the site on his belly that he had ripped out.
Time goes by...
...
It's in now. It's in his lower belly, but on the opposite side. He'll be ok. I just feel so badly that he is bothered enough to be awakened by his site changes.
I hope he can't remember them.
Peace,
June
Sunday, December 4, 2011
Sunday, November 27, 2011
Mad Libs
For Thanksgiving, we traveled to Maryland. It was a lovely visit with family, including a speedboat ride on the Chesapeake, the annual football game, swimming at the hotel, and the biggest turkey I've ever seen!
On the trip down, Jenna brought Mad Libs... a family favorite of ours!! Always a funny story, especially with Jim and Jimmy's funny parts of speech choices (use your imagination - you know, a "Smelly Birthday", or a "Hairy Christmas"... the words that make the boys laugh!!!)
Jimmy and Jenna just love them, and in only first grade, Jimmy knows what even adverbs are!!! Jenna is such a good teacher and takes such good care of her brother!!!
Well, I'm sure I mentioned in the past that swimming makes the insulin pump site a bit less adhesive... well, it ripped off on Thursday morning after we arrived at the hotel and took a dip in the pool before we made our way to our Thanksgiving extravaganza... Jimmy was getting dressed when it came off... no doubt due to the chlorine...
So, he sucked it up and accepted a new site (after avoiding it at first by locking himself in the bathroom, bribing him with extra dessert, running down the hotel hallway, scratching his back, allowing him to pick his own site, and more...)
The site was done on Thursday at about noon... only to have the site rip out after Friday morning after another swim...
Poor kid. It's so awful to have to handle his diabetes, and it's NOTHING compared to what he goes through. I almost cried for him that he would have to have a new site within a 12 hour time period. He cried, screamed and locked himself in the bathroom (again) to avoid it.
As you can imagine, it wasn't pretty.
I had to talk Jimmy into it, and Jim had to talk me out of losing it from how upset I felt I made Jimmy feel. He was almost as upset as the time I hound him hiding in my closet when he didn't want a shot early on in his diabetes journey...
After the site, I held Jimmy, rocked him scratched his back, whispered good stuff to him, tried to make him smile (to no avail), etc... He acted as though it was the end of the world. My heart broke for him.
And then came Jenna to the rescue with Mad Libs!! Jimmy finally started to open up and let it out. Jenna asked for an adjective. Jimmy offered, "mad."
Jenna asked for a noun. Jimmy said, "frown."
Clearly he was expressing how upset he was with the site insertion. My poor little Jimmy.
I'm thankful that he let it out, but my heart continues to break for him.
I'm thankful for so many things, but I'm not a fan of diabetes.
I'm thankful.
Peace,
June
On the trip down, Jenna brought Mad Libs... a family favorite of ours!! Always a funny story, especially with Jim and Jimmy's funny parts of speech choices (use your imagination - you know, a "Smelly Birthday", or a "Hairy Christmas"... the words that make the boys laugh!!!)
Jimmy and Jenna just love them, and in only first grade, Jimmy knows what even adverbs are!!! Jenna is such a good teacher and takes such good care of her brother!!!
Well, I'm sure I mentioned in the past that swimming makes the insulin pump site a bit less adhesive... well, it ripped off on Thursday morning after we arrived at the hotel and took a dip in the pool before we made our way to our Thanksgiving extravaganza... Jimmy was getting dressed when it came off... no doubt due to the chlorine...
So, he sucked it up and accepted a new site (after avoiding it at first by locking himself in the bathroom, bribing him with extra dessert, running down the hotel hallway, scratching his back, allowing him to pick his own site, and more...)
The site was done on Thursday at about noon... only to have the site rip out after Friday morning after another swim...
Poor kid. It's so awful to have to handle his diabetes, and it's NOTHING compared to what he goes through. I almost cried for him that he would have to have a new site within a 12 hour time period. He cried, screamed and locked himself in the bathroom (again) to avoid it.
As you can imagine, it wasn't pretty.
I had to talk Jimmy into it, and Jim had to talk me out of losing it from how upset I felt I made Jimmy feel. He was almost as upset as the time I hound him hiding in my closet when he didn't want a shot early on in his diabetes journey...
After the site, I held Jimmy, rocked him scratched his back, whispered good stuff to him, tried to make him smile (to no avail), etc... He acted as though it was the end of the world. My heart broke for him.
And then came Jenna to the rescue with Mad Libs!! Jimmy finally started to open up and let it out. Jenna asked for an adjective. Jimmy offered, "mad."
Jenna asked for a noun. Jimmy said, "frown."
Clearly he was expressing how upset he was with the site insertion. My poor little Jimmy.
I'm thankful that he let it out, but my heart continues to break for him.
I'm thankful for so many things, but I'm not a fan of diabetes.
I'm thankful.
Peace,
June
Saturday, November 12, 2011
I hate this
At 11pm, I ripped off Jimmy's site on his belly. It was 2 days old (the norm), he was itching it, but he didn't want it off (and that was at 6pm). He'd prefer to be asleep when I change his site...
Poor guy, at 11, he was sound asleep, and I thought it would be ok to take it off. He woke up enough to proclaim, "Owwwwwww!"
Tears came to my eyes as I scratched Jimmy's back to make it all ok again and let him go back to sleep. I HATE that I have to interrupt his sleep to take care of DIABETES.
Just the word is awful. I've got tears in my eyes.
So now, I've put in the new site. It's in his arm. I tried to roll him over, and he held his arm and told me, "NO!" But, I waited until he fell asleep again and then I put it in. He didn't wake up. Thank God. Jimmy's regular life is constantly interrupted for D. It's not right. It's so not right.
He won't remember the removal of the site tonight, or the insertion of the new site tonight, but I will.
I hate hurting him. I hate diabetes. and I hate that it gets a capital d everywhere. It doesn't deserve a capital d.
I've got to test him again in an hour, so I've got to get some z's.
My sister told me today that I've got a lot on my plate. I told her, "Everyone has a lot on their plate. Right?" Everyone's got something. Everyone has something on their plate...
And besides, I signed up for what's on my plate. I don't mind at all the work I've got in front of me... I just hope I can absorb a percentage of what Jimmy has on his plate. I'll take whatever I can for him.
I hate diabetes.
Peace,
June
Poor guy, at 11, he was sound asleep, and I thought it would be ok to take it off. He woke up enough to proclaim, "Owwwwwww!"
Tears came to my eyes as I scratched Jimmy's back to make it all ok again and let him go back to sleep. I HATE that I have to interrupt his sleep to take care of DIABETES.
Just the word is awful. I've got tears in my eyes.
So now, I've put in the new site. It's in his arm. I tried to roll him over, and he held his arm and told me, "NO!" But, I waited until he fell asleep again and then I put it in. He didn't wake up. Thank God. Jimmy's regular life is constantly interrupted for D. It's not right. It's so not right.
He won't remember the removal of the site tonight, or the insertion of the new site tonight, but I will.
I hate hurting him. I hate diabetes. and I hate that it gets a capital d everywhere. It doesn't deserve a capital d.
I've got to test him again in an hour, so I've got to get some z's.
My sister told me today that I've got a lot on my plate. I told her, "Everyone has a lot on their plate. Right?" Everyone's got something. Everyone has something on their plate...
And besides, I signed up for what's on my plate. I don't mind at all the work I've got in front of me... I just hope I can absorb a percentage of what Jimmy has on his plate. I'll take whatever I can for him.
I hate diabetes.
Peace,
June
Friday, November 4, 2011
where do i begin?
My little King. Jimmy was "The Burger King" for Halloween, and he was a big hit!
I'm so proud of Jimmy. For only 6 years old, he is becomming so incredibally responsible and wise beyond his years - yet somehow, he remains a little boy!!! He manages to test his own blood sugar, deliver insulin when he's high, and count the carbohydrates he eats (what other 6 year old does this?) all while being funloving, mischeivous and getting into trouble regularly!!
It's been so long since my last posting - and my only excuse is that I'm too busy to post. Blogging has been kind of cathartic for me to get my feelings and thoughts down... and to not be able to do that has been rough.
It's just too much at times, yet we have no choice. It doesn't end.
But no matter how much it puts me back, Jimmy has literally NO end. This is with him for life...
The picture above is from the Molly Center & JDRF's Halloween party. The caricaturist they had last year was there again this year, and she was able to capture the essence of Jimmy to a tee!!!
Much more to come - I am going to budget time to post more often....
Peace,
June
Monday, July 4, 2011
a plethera of topics!
So much has happened, and now that summer is here, I thought I'd have more time to post... But it's still so busy!!!!!
I don't know where to begin... I'll start with an amazing experience.
CAMP NEJEDA (http://www.campnejeda.org)
We had a WONDERFUL time at Family Weekend at Camp Nejeda!!!!! June is such a busy time of year for us as teachers, and it was hard to pick up and go away for 3 days. But it was just the doctor ordered; I found the weekend to be a blessing, informative, healing, beneficial and more. In searching for just the right word, salubrious seems to about cover it. Our salubrious weekend at Camp Nejeda was just what the doctor ordered.
Our experience was amazing. Not that I'm happy that other people are going through what we are, but it helps to know that there are people just like us with whom we can relate. We got to meet other families who know exactly what we are going through... You know when your kids are sick with a cold or cough or a stomach bug - and you wake up in the middle of the night to check on them? Well, that's every night for the parents of a diabetic. We test Jimmy at midnight and 3 a.m. most nights. If he's low, we have to wake him up to make him drink a juice box (and he's so cute sipping on the straw mostly asleep!!) He's not usually low at night, but still, we check - at least once, but usually 2x a night. There's one mom we met who checks her son every hour or 2 every single night. With all my heart, I can relate. I'm so afraid he'll go low, or he'll be too high and need a correction, or his pump site will come out, or his pump is pressing into his skin too much... Although I get so much love and support from friends and family, I found solace in spending the weekend with all of these wonderful families.
One family has 3 children who are all Type 1 diabetics, the oldest of whom is autistic. The father said that he thinks the reason he was with us that weekend was to make us feel better. I simply can't fathom what he is going through. I guess all one can do is play the hand that God deals you. I pray that his family has help from family and friends. I pray that his children are ok. I pray that he got as much out of the weekend as I did. Another family has 2 diabetic children and 2 full time jobs. Another family has a boy Jimmy's age who was diagnosed when his sister was just a newborn. I can't even imagine what that must have been like. Every family was attentive to each others' story. Every family offered support. It was like a Cornerstone weekend for families of diabetics!
And that's just my experience! I am so happy for my son that he got to play with other kids just like him! It was completely normal have a pump attached with a tube dangling out from his waistline. Almost every counselor wore their pump site in a visible spot. I actually found myself feeling bad for Jenna that she wasn't like all the rest of the kids! No site for her, no testing for her, no carb counting for her... It was a funny feeling to know that Jimmy and his diabetes was the norm at camp! He got to know so many kids and counselors with diabetes just like him! Almost all of the kids and counselors there had an insulin pump!!! At one point, one of the insulin pumps sounded an alarm and all 13 kids checked to see if it was theirs!!!
Our time there was a blessing, and I'm so happy we went! The line of the weekend was from one of the mothers. When her son was diagnosed and they were in the hospital, she told him, "I wish I could take your diabetes away and have it myself." His response was, "No mommy, I don't want you to have diabetes.............. Let's give it to Daddy!!!!!"
I don't think I've done the weekend justice, but I really feel better off for having experienced Camp Nejeda. I really look forward to next year! Jimmy can go for a week on his own next year, too (although I don't know if I can do without my Jimmy for a whole week! lol)
I have the emails of the counselors and families who were there for the weekend, and I hope to be able to reconnect with some or all of them in the future.
INTERCRANIAL ARACHNOID CYST
Earlier this morning, I made an appointment for Jimmy's 2nd annual MRI for his Arachnoid Cyst. Remembering back to a year ago, it was diagnosed after he had gotten hit in the head with a bat. To rule out a skull fracture, they did a CAT scan and found the cyst (completely unrelated to the bat incident.) As if Type 1 diabetes wasn't enough, I now had to follow up with an MRI of his brain an a Pediatric Neurosurgeon.
He's probably had the cyst since birth, but they want to check him every year to make sure there are no changes. Here's what Jimmy's cyst kind of looks like... I got this pic from the internet, since I don't have his scan. It's similar in size and shape to Jimmy's, but his is more toward the front of his head... maybe a little fatter and not as long - but you get the picture.
In a nutshell, the cyst is a benign collection of brain fluid that is not where it's supposed to be. It has to be monitored yearly to check for growth or changes, and small ones usually not a problem. Here's a site I found that kind of spells out what an "Intracranial Arachnoid Cyst" is: http://www.skullbaseinstitute.com/arachnoid-cyst/
Of course, Jimmy's is a "sizable" cyst (not small), but so far it doesn't appear to be causing any problems (such as headaches, dizziness, vomiting, etc...)
So, I'm not going to do my best not to worry about it (yeah, right). I'll wait for the MRI and follow up appointment later this month and see what the doctor has to say. Until then, back to Type 1.
7.7 A1C
He's growing and gaining weight wonderfully! Off the charts for height and just under 100th percentile for weight. The doctor says he looks good and Although his A1C went from a 7 four months ago to a 7.7, his doctor is happy. The 7 had too many lows, so our goal was for fewer lows for our next appointment. We did it! He was running high there for a while, and I was really worried that it would be over an 8 - so, I'll take a 7.7.
The doctor helped us raise basal rates and adjust carb ratios. Although it wasn't our favorite Molly Center nurse, Rachel, it was a good appointment. We've just been spoiled with how wonderful and amazing Rachel is. Hopefully, she'll be at our next appointment in September!
ISSUES
He's still having skin issues with the tape for his sensor... It's not on at the moment. He HATES having it inserted. I usually do it at night, but then I have to wait 2 hours to calibrate it... And the tape already came off a few times in the pool. We'll certainly revisit it - with new tape. To be continued...
Lately, Jimmy doesn't want to test and yells, "I HATE TESTING! WHY DO I HAVE TO TEST???" every time he has to test with me. It breaks my heart. My last post was about Jimmy and inserting new sites. He hates to do it. It's a huge ordeal sometimes. I'd estimate that 1 out of 3 times now he is ok with it. The other 2 times are draining. As I said in my last post, my heart breaks for him.
So, now he hates testing, doesn't want his site changed and would rather do anything but get his sensor site inserted. What do I do???
Jimmy had a major meltdown in June toward the end of school. His site was in need of changing when he was at school, so I went at lunch to do it. Jimmy tried everything to get out of doing a site change at school. Running out of the room, trying to lock himself in the bathroom, kicking, arms flailing, throwing anything in his reach, crying, yelling, etc... It was a total venting meltdown. He's 6, and what I've asked of him to do in the last year would be hard for a mature grown up. He doesn't have the skills to properly voice his thoughts, feelings and/or objections to his treatment. Poor kid. I let him punch pillows, but I'm not sure if that's such a good thing. He throws his tester when he's done testing - I know that's not a good thing.
I got to have a meltdown, too. After his episode in school, I was leaving (after having to just restrain my son to insert his site.) I was strong the whole time, until I saw a look on one of the teacher's faces. In one glance, she conveyed how sorry she was for what Jimmy was going through. It was all I needed, and burst out sobbing as I was leaving the building to go to the parking lot. You know that full blown ugly sob - the kind where where your shoulders go up and down and you need tissues for more than your eyes... I think the angels were at work. The bus driver came to my rescue - he's a kind man who I know as more than the bus driver - he's the secretary's husband and a friend of my husband's - who simply came over and asked if there was anything he could do or was there someone he could get to help me. I couldn't control myself, and somehow I wasn't even remotely embarrassed to be crying in front of him! He made sure I turned on the car to put the air conditioning on (it hadn't even occurred tome to turn it on!) and saw to it that I was calmed down before I drove. It was a long time coming that I allowed myself to let it all out, and days before Camp Nejeda. Quite timely, I think.
I have a call in to the Molly Center to find out about counseling or group meetings for him... they're going to think I'm crazy because he's a seemingly perfectly happy, adjusted, normal, enthusiastic, life loving kind of kid. He just has these meltdowns and fits of 6 year old tantrums associated with his diabetes care.
My new approach is to ask, "What would Blaze do?" Blaze was his counselor at Camp Nejeda. He was a great role model for Jimmy, as were all the counselors! He never complained once about testing. Not once. It was a non issue - it was what everyone did! I hope that Camp will be a place for Jimmy to not have diabetes be an issue in the future. His care was NEVER an issue while we were there.
JIMMY THE READER!!!
I don't know where to begin... I'll start with an amazing experience.
CAMP NEJEDA (http://www.campnejeda.org)
We had a WONDERFUL time at Family Weekend at Camp Nejeda!!!!! June is such a busy time of year for us as teachers, and it was hard to pick up and go away for 3 days. But it was just the doctor ordered; I found the weekend to be a blessing, informative, healing, beneficial and more. In searching for just the right word, salubrious seems to about cover it. Our salubrious weekend at Camp Nejeda was just what the doctor ordered.
Our experience was amazing. Not that I'm happy that other people are going through what we are, but it helps to know that there are people just like us with whom we can relate. We got to meet other families who know exactly what we are going through... You know when your kids are sick with a cold or cough or a stomach bug - and you wake up in the middle of the night to check on them? Well, that's every night for the parents of a diabetic. We test Jimmy at midnight and 3 a.m. most nights. If he's low, we have to wake him up to make him drink a juice box (and he's so cute sipping on the straw mostly asleep!!) He's not usually low at night, but still, we check - at least once, but usually 2x a night. There's one mom we met who checks her son every hour or 2 every single night. With all my heart, I can relate. I'm so afraid he'll go low, or he'll be too high and need a correction, or his pump site will come out, or his pump is pressing into his skin too much... Although I get so much love and support from friends and family, I found solace in spending the weekend with all of these wonderful families.
One family has 3 children who are all Type 1 diabetics, the oldest of whom is autistic. The father said that he thinks the reason he was with us that weekend was to make us feel better. I simply can't fathom what he is going through. I guess all one can do is play the hand that God deals you. I pray that his family has help from family and friends. I pray that his children are ok. I pray that he got as much out of the weekend as I did. Another family has 2 diabetic children and 2 full time jobs. Another family has a boy Jimmy's age who was diagnosed when his sister was just a newborn. I can't even imagine what that must have been like. Every family was attentive to each others' story. Every family offered support. It was like a Cornerstone weekend for families of diabetics!
And that's just my experience! I am so happy for my son that he got to play with other kids just like him! It was completely normal have a pump attached with a tube dangling out from his waistline. Almost every counselor wore their pump site in a visible spot. I actually found myself feeling bad for Jenna that she wasn't like all the rest of the kids! No site for her, no testing for her, no carb counting for her... It was a funny feeling to know that Jimmy and his diabetes was the norm at camp! He got to know so many kids and counselors with diabetes just like him! Almost all of the kids and counselors there had an insulin pump!!! At one point, one of the insulin pumps sounded an alarm and all 13 kids checked to see if it was theirs!!!
Our time there was a blessing, and I'm so happy we went! The line of the weekend was from one of the mothers. When her son was diagnosed and they were in the hospital, she told him, "I wish I could take your diabetes away and have it myself." His response was, "No mommy, I don't want you to have diabetes.............. Let's give it to Daddy!!!!!"
I don't think I've done the weekend justice, but I really feel better off for having experienced Camp Nejeda. I really look forward to next year! Jimmy can go for a week on his own next year, too (although I don't know if I can do without my Jimmy for a whole week! lol)
I have the emails of the counselors and families who were there for the weekend, and I hope to be able to reconnect with some or all of them in the future.
INTERCRANIAL ARACHNOID CYST
Earlier this morning, I made an appointment for Jimmy's 2nd annual MRI for his Arachnoid Cyst. Remembering back to a year ago, it was diagnosed after he had gotten hit in the head with a bat. To rule out a skull fracture, they did a CAT scan and found the cyst (completely unrelated to the bat incident.) As if Type 1 diabetes wasn't enough, I now had to follow up with an MRI of his brain an a Pediatric Neurosurgeon.
He's probably had the cyst since birth, but they want to check him every year to make sure there are no changes. Here's what Jimmy's cyst kind of looks like... I got this pic from the internet, since I don't have his scan. It's similar in size and shape to Jimmy's, but his is more toward the front of his head... maybe a little fatter and not as long - but you get the picture.
In a nutshell, the cyst is a benign collection of brain fluid that is not where it's supposed to be. It has to be monitored yearly to check for growth or changes, and small ones usually not a problem. Here's a site I found that kind of spells out what an "Intracranial Arachnoid Cyst" is: http://www.skullbaseinstitute.com/arachnoid-cyst/Of course, Jimmy's is a "sizable" cyst (not small), but so far it doesn't appear to be causing any problems (such as headaches, dizziness, vomiting, etc...)
So, I'm not going to do my best not to worry about it (yeah, right). I'll wait for the MRI and follow up appointment later this month and see what the doctor has to say. Until then, back to Type 1.
7.7 A1C
He's growing and gaining weight wonderfully! Off the charts for height and just under 100th percentile for weight. The doctor says he looks good and Although his A1C went from a 7 four months ago to a 7.7, his doctor is happy. The 7 had too many lows, so our goal was for fewer lows for our next appointment. We did it! He was running high there for a while, and I was really worried that it would be over an 8 - so, I'll take a 7.7.
The doctor helped us raise basal rates and adjust carb ratios. Although it wasn't our favorite Molly Center nurse, Rachel, it was a good appointment. We've just been spoiled with how wonderful and amazing Rachel is. Hopefully, she'll be at our next appointment in September!
ISSUES
He's still having skin issues with the tape for his sensor... It's not on at the moment. He HATES having it inserted. I usually do it at night, but then I have to wait 2 hours to calibrate it... And the tape already came off a few times in the pool. We'll certainly revisit it - with new tape. To be continued...
Lately, Jimmy doesn't want to test and yells, "I HATE TESTING! WHY DO I HAVE TO TEST???" every time he has to test with me. It breaks my heart. My last post was about Jimmy and inserting new sites. He hates to do it. It's a huge ordeal sometimes. I'd estimate that 1 out of 3 times now he is ok with it. The other 2 times are draining. As I said in my last post, my heart breaks for him.
So, now he hates testing, doesn't want his site changed and would rather do anything but get his sensor site inserted. What do I do???
Jimmy had a major meltdown in June toward the end of school. His site was in need of changing when he was at school, so I went at lunch to do it. Jimmy tried everything to get out of doing a site change at school. Running out of the room, trying to lock himself in the bathroom, kicking, arms flailing, throwing anything in his reach, crying, yelling, etc... It was a total venting meltdown. He's 6, and what I've asked of him to do in the last year would be hard for a mature grown up. He doesn't have the skills to properly voice his thoughts, feelings and/or objections to his treatment. Poor kid. I let him punch pillows, but I'm not sure if that's such a good thing. He throws his tester when he's done testing - I know that's not a good thing.
I got to have a meltdown, too. After his episode in school, I was leaving (after having to just restrain my son to insert his site.) I was strong the whole time, until I saw a look on one of the teacher's faces. In one glance, she conveyed how sorry she was for what Jimmy was going through. It was all I needed, and burst out sobbing as I was leaving the building to go to the parking lot. You know that full blown ugly sob - the kind where where your shoulders go up and down and you need tissues for more than your eyes... I think the angels were at work. The bus driver came to my rescue - he's a kind man who I know as more than the bus driver - he's the secretary's husband and a friend of my husband's - who simply came over and asked if there was anything he could do or was there someone he could get to help me. I couldn't control myself, and somehow I wasn't even remotely embarrassed to be crying in front of him! He made sure I turned on the car to put the air conditioning on (it hadn't even occurred tome to turn it on!) and saw to it that I was calmed down before I drove. It was a long time coming that I allowed myself to let it all out, and days before Camp Nejeda. Quite timely, I think.
I have a call in to the Molly Center to find out about counseling or group meetings for him... they're going to think I'm crazy because he's a seemingly perfectly happy, adjusted, normal, enthusiastic, life loving kind of kid. He just has these meltdowns and fits of 6 year old tantrums associated with his diabetes care.
My new approach is to ask, "What would Blaze do?" Blaze was his counselor at Camp Nejeda. He was a great role model for Jimmy, as were all the counselors! He never complained once about testing. Not once. It was a non issue - it was what everyone did! I hope that Camp will be a place for Jimmy to not have diabetes be an issue in the future. His care was NEVER an issue while we were there.
JIMMY THE READER!!!
I don’t know how his teacher did it, but Jimmy is READING!!!!! His teacher had such an amazing effect on him this year! He went from only knowing how to write his name in September to being a full-fledged sounder-outer!!!!! I’m so proud of my boy! His report card was great, and thanks to the clock on his pump, he's even telling time! I recently told him that we would be going somewhere at 3pm, and that it would be in about an hour. In response, he told me that we would not be leaving in an hour, that we would actually be leaving in 1 hour and 4 minutes (I was flabbergasted that the time he said that, that it was 1:56!!! One hour and 4 minutes indeed!!! Believe it or not, the pump has helped Jimmy with numbers and time. He can read numbers into the hundreds - "Mom, I'm a 159, isn't that 9 points too high?" or, "Mom, I'm 227, I bolused already!!" He likes to be in charge of his pump and meter, so his numbers (and time telling) really benefited!!!!
As for reading, we signed up for the summer reading program at our town library, and he’s now begging us to read together regularly! (Of course, there are the bribes, uh, er, I mean incentives that come along with the summer reading program, but hey – whatever works!!!)
More next time...
Peace,
June
Sunday, June 12, 2011
my heart breaks for him
Jimmy cried in pain twice tonight...
I remember the time when Jenna woke up on the day of her 7th birthday party -- throwing up. She had a bad stomach bug, and I broke the news to her that she wouldn't be able to have her birthday party that day, that we would need to postpone it. To her, I was the WORST mother in the world. She's the most respectful, loving, wonderful daughter (most of the time, lol), but that moment when I told her, she turned into a monster who hit me, told me she hated me, screamed, cried, threw herself on the ground - I took it all. I let her do it. This was the worst thing that had ever happened to her, and according to her, it was me that canceled it. I let her vent, calmed her down, and then cried for an hour myself. I felt terrible for her. I felt terrible doing it to her - the canceling of the party... I know it wasn't me, but I just feel responsible for anything bad that happens to my children.
So, I just finished crying. The poor kid had to get a new pump site as well as a new sensor site.
To start, Jimmy had a choice tonight -- a new site in either his belly, or hip (which still hasn't happened yet). He chose his leg - which was not an option. So, I caved and said the leg site was fine, as long as he ripped off the old site (which he HATES doing.) In the end, he chose his belly (I'll rip the site off when he's asleep.)
So, the belly it was. He has to prep himself, and say no, and run away, and come back and suck his stomach in, and put bluey on it (his blanket - see a much earlier post about bluey), and roll on the floor, and breathe in and out five hundred times, and I finally got him to sit still for 3 seconds and told him on 1 I would do it. I knew he would bolt, so I said 3, 2... And I did it before 1.
I'm the worst mother in the world. He screamed and cried and carried on for 15 minutes that I tricked him and that it hurt, and itched, and burned, etc...
Just like I took it when Jenna gave it to me, I took it this time, too.
Jenna's only done that once. Jimmy does it upon occasion when I insert a new pump site, and 1 in 3 times I insert a new sensor site. (sigh) He does it every so often for Jim, but at least then he comes running to me... My heart breaks regularly for my little boy. I can take it, but I just want him to grow up feeling this is his normal. I don't want him to feel different, or burdened, or stressed about it. I want him to know that this IS his normal.
He played Little League this season (maybe the tallest in the league, short of another tall boy on his team.) His first season!! How exciting it was!!! T-Ball might be the cutest thing ever (and I thought Kindergarten Softball was cute!!!) When Jimmy was up to bat, a father in the stands said loudly, "Oh no, they're gonna have to back up the players, this kid's a MONSTER!" I didn't know whether to take it as a compliment or to hide behind the bleachers. With his size and our block's consistency in impromptu whiffle ball games in which Jimmy holds his own against kids older than him, he is able to whack the crap out of the ball (pardon my french). So, back to little league... after the dad in the stands informs the coach that the "monster" is up, the infield backs up, and Jimmy proceeds to hit the ball over their heads to just before the lip of the outfield. He proudly declared it a home run, even though every kid just hits and runs to 1st base. He feels great about playing, and I'm so happy for him.
So, he makes it to 1st base in one game, and the coach from the other team (all the coaches coach on the field) says to Jimmy, "So, what do you have there, a BEEPER or something????" (Jimmy ALWAYS wears his shirts un-tucked, until he began T-Ball this year, you see, baseball players tuck their shirts in... So, since Jimmy clips his pump (which he's named "Jeter") on his waist band, everyone can see it. Now, Jimmy is totally used to it at this point and it's not an issue. So, he looks to me on the sidelines (I heard the comment from the coach) and I said to him (and I really felt badly), "It's his insulin pump." He said he was sorry, and visibly felt terrible and apologized, but I believe this may have been his first time that Jimmy knew that an insulin pump may not be the norm.
I said it earlier, I don't want him to feel badly, burdened or stressed about having diabetes. I don't want him to feel different.
My little boy. My sweet, little boy. He's so perfect and precious and such a "regular kid" in every way. But, there's this thing called diabetes that prevents him from being "regular." It's my job to make sure he can answer the question about what his pump is with confidence. I hope he can answer the question about his pump, "Hey is that a beeper?" when asked with complete confidence - as if it's such a normal thing and that it's SO not out of the ordinary.
Or, do I sew pockets into every piece of clothing he owns so he can hide it and no one knows?
To be continued...
Peace,
June
p.s. Jimmy's baseball picture came out so stinkin' cute - will scan and post as soon as I can...
p.p.s. The sensor site was just as ugly tonight. I wish I could take all his pain away.
I remember the time when Jenna woke up on the day of her 7th birthday party -- throwing up. She had a bad stomach bug, and I broke the news to her that she wouldn't be able to have her birthday party that day, that we would need to postpone it. To her, I was the WORST mother in the world. She's the most respectful, loving, wonderful daughter (most of the time, lol), but that moment when I told her, she turned into a monster who hit me, told me she hated me, screamed, cried, threw herself on the ground - I took it all. I let her do it. This was the worst thing that had ever happened to her, and according to her, it was me that canceled it. I let her vent, calmed her down, and then cried for an hour myself. I felt terrible for her. I felt terrible doing it to her - the canceling of the party... I know it wasn't me, but I just feel responsible for anything bad that happens to my children.
So, I just finished crying. The poor kid had to get a new pump site as well as a new sensor site.
To start, Jimmy had a choice tonight -- a new site in either his belly, or hip (which still hasn't happened yet). He chose his leg - which was not an option. So, I caved and said the leg site was fine, as long as he ripped off the old site (which he HATES doing.) In the end, he chose his belly (I'll rip the site off when he's asleep.)
So, the belly it was. He has to prep himself, and say no, and run away, and come back and suck his stomach in, and put bluey on it (his blanket - see a much earlier post about bluey), and roll on the floor, and breathe in and out five hundred times, and I finally got him to sit still for 3 seconds and told him on 1 I would do it. I knew he would bolt, so I said 3, 2... And I did it before 1.
I'm the worst mother in the world. He screamed and cried and carried on for 15 minutes that I tricked him and that it hurt, and itched, and burned, etc...
Just like I took it when Jenna gave it to me, I took it this time, too.
Jenna's only done that once. Jimmy does it upon occasion when I insert a new pump site, and 1 in 3 times I insert a new sensor site. (sigh) He does it every so often for Jim, but at least then he comes running to me... My heart breaks regularly for my little boy. I can take it, but I just want him to grow up feeling this is his normal. I don't want him to feel different, or burdened, or stressed about it. I want him to know that this IS his normal.
He played Little League this season (maybe the tallest in the league, short of another tall boy on his team.) His first season!! How exciting it was!!! T-Ball might be the cutest thing ever (and I thought Kindergarten Softball was cute!!!) When Jimmy was up to bat, a father in the stands said loudly, "Oh no, they're gonna have to back up the players, this kid's a MONSTER!" I didn't know whether to take it as a compliment or to hide behind the bleachers. With his size and our block's consistency in impromptu whiffle ball games in which Jimmy holds his own against kids older than him, he is able to whack the crap out of the ball (pardon my french). So, back to little league... after the dad in the stands informs the coach that the "monster" is up, the infield backs up, and Jimmy proceeds to hit the ball over their heads to just before the lip of the outfield. He proudly declared it a home run, even though every kid just hits and runs to 1st base. He feels great about playing, and I'm so happy for him.
So, he makes it to 1st base in one game, and the coach from the other team (all the coaches coach on the field) says to Jimmy, "So, what do you have there, a BEEPER or something????" (Jimmy ALWAYS wears his shirts un-tucked, until he began T-Ball this year, you see, baseball players tuck their shirts in... So, since Jimmy clips his pump (which he's named "Jeter") on his waist band, everyone can see it. Now, Jimmy is totally used to it at this point and it's not an issue. So, he looks to me on the sidelines (I heard the comment from the coach) and I said to him (and I really felt badly), "It's his insulin pump." He said he was sorry, and visibly felt terrible and apologized, but I believe this may have been his first time that Jimmy knew that an insulin pump may not be the norm.
I said it earlier, I don't want him to feel badly, burdened or stressed about having diabetes. I don't want him to feel different.
My little boy. My sweet, little boy. He's so perfect and precious and such a "regular kid" in every way. But, there's this thing called diabetes that prevents him from being "regular." It's my job to make sure he can answer the question about what his pump is with confidence. I hope he can answer the question about his pump, "Hey is that a beeper?" when asked with complete confidence - as if it's such a normal thing and that it's SO not out of the ordinary.
Or, do I sew pockets into every piece of clothing he owns so he can hide it and no one knows?
To be continued...
Peace,
June
p.s. Jimmy's baseball picture came out so stinkin' cute - will scan and post as soon as I can...
p.p.s. The sensor site was just as ugly tonight. I wish I could take all his pain away.
Friday, May 20, 2011
Nomination for Sibling of the Year!!!!!
A nomination for JDRF Sibling of the Year for Jenna!!!!
Here's what we submitted...
As I’m filling out this nomination for my daughter Jenna, she and her brother, Jimmy, are playing basketball out in the driveway. It was Jenna’s idea to take him out there so he could get his exercise. She loves him so much and is so very instrumental in his care. Here’s why I believe Jenna Karpowich should be named Sibling of the Year…
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 being a 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... One day, for example, my 18-year-old niece (who’s brother also has Type 1) came over 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 own diabetic brother takes insulin with shots. Her plan was to videotape them both and incorporate the videos into her project. One problem: Jimmy was refusing to be video taped. He was being - ummm – well - still looking for that combination word for how he gets - let's just say he was being, JIMMY!!! Here came Jenna to the rescue. She 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 then they were able to get the my niece’s project done! He wasn't in a perfect mood, but - Jenna got him to do what my niece and I couldn't do!!! The video was done - he got through it, and it was all thanks to Jenna!!!!!!!!!!!!!!!!!!! She is an amazing sibling.
Jenna 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 tests him, and she's even learned how to count Jimmy's carbs. She has attended every Molly Diabetes Education Center class, every support group, read every children’s book on the subject, visited Jimmy’s class to teach them about Jimmy’s pump, gone to every doctor appointment with him, and more! Learning how to manage some of his other diabetes "stuff" is where she is currently focusing her attention. She is a Girl Scout Junior, and for their group project, she and her troop took on a Diabetes Awareness Theme to earn their Bronze Award. Here’s how it all started.
This past summer, Jenna, Jimmy and 3 friends decided to have a lemonade stand. Jenna convinced them to ask their customers to make a donation to JDRF as well. Just about all of them did, and that’s how Jenna’s Bronze Award idea began! Here’s the picture of their “Stand”ing up to Diabetes Lemonade Stand that made the newspaper! Jenna is on the right in blue and black, and Jimmy is in the middle.
That’s what led to Jenna’s idea for Girl Scouts…
As a Girl Scout Junior this year, her troop was to complete a community project to earn their Junior "bronze" Award.
The idea Jenna and her troop originally wanted to do was raise more money for Juvenile Diabetes. Unfortunately, the Girl Scout’s has a policy the scouts are not allowed to raise money for anything other than the Girl Scouts. So… Jenna and the troop decided to turn it into a “Diabetes Awareness” Bronze Award project.
October 10th was River Edge Day. The girls contacted JDRF to get some handouts and buttons they could hand out. They also purchased pumpkins and paint for children to paint at their table. Kids came, painted a pumpkin, learned about diabetes and took home some JDRF goodies! Jenna was becoming an expert on the subject and telling everyone who came to the table all about diabetes!
Later in October, they had to make a Scarecrow for Halloween with the Girl Scouts. Just what was Jenna and her troop’s theme? A Scarecrow standing on his head to help Turn Diabetes Upside Down!!! They named their scarecrow: “J.D. Crow!” Here’s a rap-song they wrote and performed for the Scarecrow judges:
Turn Diabetes Upside Down With J.D. Crow and Troop 1416
I’m J.D. Crow and I’m here to say hello
here’s one thing that I want you to know
Juvenile Diabetes is what the J.D. stands for
Let’s kick this disease out the back door!
I’m standing on my head -- I’m upside down
Let’s turn J.D. around and get it out of town!
It’s Diabetes I want to scare
So I’m here to help make you aware
We’ll turn Diabetes Upside Down and Find a cure
Troop 1416 is doing our part you can be sure!
Turn Diabetes Upside Down with J.D. Crow and Troop 1416!
Here are the pictures from the day. Jenna is standing next to J.D. Crow! You can also see the sign they painted for the big day!
Finally, Jenna wrote a play to perform with her troop for a Diabetes Awareness Presentation to younger Girl Scout Troops in April. The play was about accepting people no matter what similarities or differences they might have. In the play, other girls were treating a girl with diabetes unfairly. The play taught the lesson that no matter who you are and no matter what you have (or don’t have), everyone has the right to be treated fairly. Diabetes doesn’t mean you’re different – it just means you’re unique – just like everyone else.
I believe I hit the jackpot with my children! Jimmy has stepped up and accepted the challenge of the pump and the CGM System, and Jenna has risen to the challenge of pushing herself to learn how to take care of a diabetic. She does it all right along with us, and of her efforts, I couldn’t be more proud. I am so honored to be the mother of two extremely special individuals. Jimmy is a one of a kind trooper, and Jenna is an exceptional sibling.
Here's what we submitted...
As I’m filling out this nomination for my daughter Jenna, she and her brother, Jimmy, are playing basketball out in the driveway. It was Jenna’s idea to take him out there so he could get his exercise. She loves him so much and is so very instrumental in his care. Here’s why I believe Jenna Karpowich should be named Sibling of the Year…
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 being a 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... One day, for example, my 18-year-old niece (who’s brother also has Type 1) came over 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 own diabetic brother takes insulin with shots. Her plan was to videotape them both and incorporate the videos into her project. One problem: Jimmy was refusing to be video taped. He was being - ummm – well - still looking for that combination word for how he gets - let's just say he was being, JIMMY!!! Here came Jenna to the rescue. She 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 then they were able to get the my niece’s project done! He wasn't in a perfect mood, but - Jenna got him to do what my niece and I couldn't do!!! The video was done - he got through it, and it was all thanks to Jenna!!!!!!!!!!!!!!!!!!! She is an amazing sibling.
Jenna 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 tests him, and she's even learned how to count Jimmy's carbs. She has attended every Molly Diabetes Education Center class, every support group, read every children’s book on the subject, visited Jimmy’s class to teach them about Jimmy’s pump, gone to every doctor appointment with him, and more! Learning how to manage some of his other diabetes "stuff" is where she is currently focusing her attention. She is a Girl Scout Junior, and for their group project, she and her troop took on a Diabetes Awareness Theme to earn their Bronze Award. Here’s how it all started.
This past summer, Jenna, Jimmy and 3 friends decided to have a lemonade stand. Jenna convinced them to ask their customers to make a donation to JDRF as well. Just about all of them did, and that’s how Jenna’s Bronze Award idea began! Here’s the picture of their “Stand”ing up to Diabetes Lemonade Stand that made the newspaper! Jenna is on the right in blue and black, and Jimmy is in the middle.
That’s what led to Jenna’s idea for Girl Scouts…
As a Girl Scout Junior this year, her troop was to complete a community project to earn their Junior "bronze" Award.
The idea Jenna and her troop originally wanted to do was raise more money for Juvenile Diabetes. Unfortunately, the Girl Scout’s has a policy the scouts are not allowed to raise money for anything other than the Girl Scouts. So… Jenna and the troop decided to turn it into a “Diabetes Awareness” Bronze Award project.
October 10th was River Edge Day. The girls contacted JDRF to get some handouts and buttons they could hand out. They also purchased pumpkins and paint for children to paint at their table. Kids came, painted a pumpkin, learned about diabetes and took home some JDRF goodies! Jenna was becoming an expert on the subject and telling everyone who came to the table all about diabetes!
Later in October, they had to make a Scarecrow for Halloween with the Girl Scouts. Just what was Jenna and her troop’s theme? A Scarecrow standing on his head to help Turn Diabetes Upside Down!!! They named their scarecrow: “J.D. Crow!” Here’s a rap-song they wrote and performed for the Scarecrow judges:
Turn Diabetes Upside Down With J.D. Crow and Troop 1416
I’m J.D. Crow and I’m here to say hello
here’s one thing that I want you to know
Juvenile Diabetes is what the J.D. stands for
Let’s kick this disease out the back door!
I’m standing on my head -- I’m upside down
Let’s turn J.D. around and get it out of town!
It’s Diabetes I want to scare
So I’m here to help make you aware
We’ll turn Diabetes Upside Down and Find a cure
Troop 1416 is doing our part you can be sure!
Turn Diabetes Upside Down with J.D. Crow and Troop 1416!
Here are the pictures from the day. Jenna is standing next to J.D. Crow! You can also see the sign they painted for the big day!
Finally, Jenna wrote a play to perform with her troop for a Diabetes Awareness Presentation to younger Girl Scout Troops in April. The play was about accepting people no matter what similarities or differences they might have. In the play, other girls were treating a girl with diabetes unfairly. The play taught the lesson that no matter who you are and no matter what you have (or don’t have), everyone has the right to be treated fairly. Diabetes doesn’t mean you’re different – it just means you’re unique – just like everyone else.
I believe I hit the jackpot with my children! Jimmy has stepped up and accepted the challenge of the pump and the CGM System, and Jenna has risen to the challenge of pushing herself to learn how to take care of a diabetic. She does it all right along with us, and of her efforts, I couldn’t be more proud. I am so honored to be the mother of two extremely special individuals. Jimmy is a one of a kind trooper, and Jenna is an exceptional sibling.
Please consider Jenna Karpowich
for the honor of Sibling of the Year.
Thank you from the bottom of my heart.
June Karpowich
for the honor of Sibling of the Year.
Thank you from the bottom of my heart.
June Karpowich
Thursday, May 19, 2011
infection...
Worried sick about Jimmy.
The site on his arm where Jimmy had his "sensor" became pretty infected Tuesday morning... and it got worse yesterday... and it's bigger in surface area today, but not as red or hot or painful (medicine's probably working, but it shouldn't be getting bigger.) They did a swab of it to culture it for anything... It came back as "strep" which was suprising to me (thought that was only in throats.) Worst case scenario is IV antibiotics - say a prayer that it doesn't come to that...
It started Tuesday morning when Jimmy told me his arm hurt, and I just thought it was his usual complaint that it was uncomfortable. It didn't occur to me to look at the site since he complains regularly about it. Monday morning is when it should have been changed, but that's a whole separate story... in a nutshell, it wasn't changed when it should have been and although it's not the norm for a site to become infected so quickly, this is Jimmy (and let's face it, me) we're dealing with... He also said his head hurt when he coughed and he was kind of not himself Tuesday morning... I chalked it up to possibly having allergies... No fever, no sore throat.
So, I dropped him off at school as usual and called his nurse to alert her that he wasn't himself when, while I was on the phone, he appeared in her office asking for an icepack for his arm...
She looked at it, and told me to come to her office right away. It was swollen, red, hot to the touch, and when we took the site out, puss came out. I'm a terrible mother. I didn't even look at it. I failed him and I've put myself through the equivalent of writing, "I will not ignore my son if he says his site hurts" one thousand times on the chalk board. Needless to say, my principal told me to do whatever I needed to do. She's awesome... So, at the doctor, they "swabbed" to get a culture. I stupidly asked what they were checking for and he said that they just wanted to rule everything out. Even more stupidly, I asked what specifically he wanted to rule out. "Things like staff, mrsa..." was the answer.
WHAT???
Imagination combined with nerves is a very bad thing. He had to talk me down from the ceiling and I was able to relax and know that it wasn't either, BUT in the slim possibility that it WAS either, he was putting Jimmy on a broad spectrum heavy duty antibiotic. So, warm compresses, bacitracin, antibiotic and he'll be fine.
Unfortunately, the infection site grew steadily throughout the course of the day. I traced the original red spot at about 11 a.m. It grew at least twice the size by nightfall. We traced the outline of the redness at about 11 pm, and by morning it grew to near his elbow.
Jim stayed home with him yesterday, and brought him to the doctor again (because it was getting bigger and not receeding). They put himi on a 2nd antibiotic which would take care of "staff" if in fact that's what it was. (We still didn't have the results of the culture they took on Tuesday.)
In the meantime, on Tuesday, he was put on claritin for allergies and had a loose tooth (the front one of course) pulled due to the fact that it had a dead spot on it (from the time he fell down the steps when he was 3 and knocked it a bit crooked.) We didn't notice the dark spot until it became loose recently, since it was on the back of it. Dr. Mischel (my dentist since I've had teeth) made the decision to pull it - to make sure it came out in one piece and wasn't broken up... and he used what looked like ACTUAL PLIERS!!! Thank God Jimmy is extremely light sensitive and closes his eyes whenever he's in the dentist chair - he never saw the pliers.
So, between the arm pain, the puss, the probing swab culture, the antibiotics, the allergy medicine, the pulled tooth and the hovering mother, this poor kid has been through the ringer.
My husband cried at the doctor's office yesterday. The pediatrician put his arm around him - he felt so badly, too (same doctor who diagnosed Jimmy with diabetes and cried right along with me at the time). Jim wants to know what this little boy has done to deserve this. It's not fair and it's down right infuriating.
So, back to the dr. today, and a new outline of the latest size... The doctor is happy that it's less red, hurts less, not as hot, has no fever - and although it's getting bigger in area, the other things are more significant in hinting toward it might be healing...
You can see in the picture that we outlined the area where it started (the smallest outline.) Last night's outline is the dotted line. This morning's outline is the darkest outermost line.
My poor little guy. My heart breaks for him!
On a happier note, I just took a goofy picture of him so you can see his missing front tooth! He's so stinkin cute I can't get over it!
I'll keep you posted...
Love,
June
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UPDATE!!! Infection took 4 days before it began to recede... but it's all better! So relieved that it's over for now... Rachel at the Molly center says that she's NEVER seen an infection from the sensor - only skin irritation. Our stupid luck that Jimmy is her first case. If there are 100 children traipsing down the steps, Jimmy will be the one to fall down and knock a tooth loose. If there 25 kids in the outfield practicing how to swing a bat, Jimmy is the one who gets hit in the head with the bat requiring a trip to the ER. If there are 5,000 people going up the escalator every hour, then Jimmy is of course the one who, when the escalator stops is the one who requires 6 stitches on his shin where the shin met the teeth of the escalator steps... All of these actually happened... At this point, we're not only used to it -- we actually expect it. But, he always has a way of finding the silver lining and coming out on top. He's an amazing boy, and my world is enriched with him in it each and every day!!!
I love you Jimmy!
Peace,
Mommy
Sensor!!!
Oh my goodness, where do I begin??? We started the sensor (CGM, or continuous glucose monitoring system) a few weeks ago. It's an awesome thing in that I can look at Jimmy's pump and I know about where Jimmy's Blood Glucose level is (or at least as of 15 minutes ago.) You see, a true Blood Glucose reading is done with the finger stick and his meter. The sensor sits just under his skin, and not directly in his blood. It's called interstitial fluid, and what it comes from the blood into the layer under the skin - or somehting like that... Here's a picture of a medtronic sensor...
That's the "sensor" that looks like a horseshoe crab's "stinger". That's what sits underneath his skin. It's about 3/8 to 1/2 inch long, and actually, the needle is longer. Poor kid. My heart breaks on a continuous basis for him and what he has had to endure. I tried it myself, and although you can feel it (I've actually tried it twice), it doesn't really "hurt". But the sound of the click as it goes in is enough for your brain to tell you that it is going to hurt, which in turn really does make it hurt.... power of suggestion...
Here's what the sensor looks like when you're wearing it... keep in mind Jimmy doesn't wear it on his stomach as of yet... not enough meat there. He'll only wear it on the back of his arm - but here's what it looks like:
Here's a video of how to insert the GCM. http://www.youtube.com/watch?v=TdWZ9AC9CY0 It's a 12 minute video, but it actually takes us longer to insert... we're getting there...
Here's an email we sent to our sensor trainor nurse... She was wonderful! She's a medtronic nurse who works with one of our angels, Matt (Molly's brother). And, I think she might be an angel herself!!
Hi! We're definitely hanging in there with the sensor!! We definitely see the benefits that it will give over the long run...
A slight set back tonight... we fear that Jimmy may have "relocated" the insertion mechanism for the sensor... He's a good kid, but even in a deep sleep, he wakes up in pain just as I've inserted the sensor. He agrees that he likes knowing his number and if he's heading up or down with the arrows (and we like that, too) but he hates the insertion...
So, the sensor is off for tonight (we've looked everywhere - when it's normally where we keep everything related to his care). We fully intend to get it up and running once it's located, but what if we can't find it - is there a back up insertion we can get?
Also, I've uploaded his latest data to carelink - we had a decent day today (even in the 200's, but better than it's been. Maybe you can make more sense than we can... I'm sure you can make sense of it... It's quite difficult to get the sensor, pump, carbs, exercise, allergies, and Jimmy all on the same page... any input you have would be greatly appreciated!
Thanks so much for your call/email... Pump is working great!!
Thanks so much in advance!
June
More later,
Peace,
June
That's the "sensor" that looks like a horseshoe crab's "stinger". That's what sits underneath his skin. It's about 3/8 to 1/2 inch long, and actually, the needle is longer. Poor kid. My heart breaks on a continuous basis for him and what he has had to endure. I tried it myself, and although you can feel it (I've actually tried it twice), it doesn't really "hurt". But the sound of the click as it goes in is enough for your brain to tell you that it is going to hurt, which in turn really does make it hurt.... power of suggestion...Here's what the sensor looks like when you're wearing it... keep in mind Jimmy doesn't wear it on his stomach as of yet... not enough meat there. He'll only wear it on the back of his arm - but here's what it looks like:
Here's a video of how to insert the GCM. http://www.youtube.com/watch?v=TdWZ9AC9CY0 It's a 12 minute video, but it actually takes us longer to insert... we're getting there...
Here's an email we sent to our sensor trainor nurse... She was wonderful! She's a medtronic nurse who works with one of our angels, Matt (Molly's brother). And, I think she might be an angel herself!!
Hi! We're definitely hanging in there with the sensor!! We definitely see the benefits that it will give over the long run...
A slight set back tonight... we fear that Jimmy may have "relocated" the insertion mechanism for the sensor... He's a good kid, but even in a deep sleep, he wakes up in pain just as I've inserted the sensor. He agrees that he likes knowing his number and if he's heading up or down with the arrows (and we like that, too) but he hates the insertion...
So, the sensor is off for tonight (we've looked everywhere - when it's normally where we keep everything related to his care). We fully intend to get it up and running once it's located, but what if we can't find it - is there a back up insertion we can get?
Also, I've uploaded his latest data to carelink - we had a decent day today (even in the 200's, but better than it's been. Maybe you can make more sense than we can... I'm sure you can make sense of it... It's quite difficult to get the sensor, pump, carbs, exercise, allergies, and Jimmy all on the same page... any input you have would be greatly appreciated!
Thanks so much for your call/email... Pump is working great!!
Thanks so much in advance!
June
More later,
Peace,
June
Wednesday, April 20, 2011
from my nephew about hw while high...
highs and homework
June April 6 at 12:13pm
Hi, Jimmy was high last night for homework - in the 400's at first (not sure why), so we didn't do the homework right away - then he was in the 300's. It was a disaster... he pressed so hard, it was (extra) messy, he couldn't focus, etc... He was high - I know it interferes with ability to focus, but to what extent is it the high, and to what extent is it that he's 6 - and well, Jimmy? Thanks for your input - Hope all is good!!
I think it's probably more that he is 6, but obviously the numbers will affect everything from mood to academic/athletic performance, emotions, and overall attitude. I'm not sure why I do it but I never let my numbers be an excuse, especially with a 6 year old I think that it is important to make that clear because than he will use that as an outlet when he really doesn't want to do homework. High numbers are not going to make anyone completely incapable of focusing so I lean more towards he is 6 and probably in a bad mood or just didn't want to do the task.
June Schnakenberg Karpowich April 6 at 7:30pm
I was afraid of that - and I didn't let on that he was having trouble because he was high... the other day, he threw a bat because he was pissed at me - I know he was high, but I never factored that into the equation with him - I'm not going to give him excuses to use... His teacher said (to me - not to Jimmy) that if he's ever high and can't focus to do his homework, to just let it go, and he can do it another time... I'm not so sure about giving him an excuse... But, he had his head down and felt bad handing in his homework today his teacher said - he was embarrassed because it really was terrible. Comparing it to his usual work, it looked like he did it in the dark with his hands tied up behind his back... poor kid. How did you know to not let it be an excuse? And, do you notice your performance on schoolwork or during a conversation or during an argument or during a game is any different when you're high? Thanks Joe, you're always so helpful!!! On another note, Jimmy's teacher was asking what the class noticed in the picture of the book she was reading. In the picture, a boy had dressed up the class pet in summer clothes - I guess it was wearing a bikini top and summer clothes, and the kids were saying they saw nice colors, funny clothes on a pet, the boy smiling, etc... Jimmy raised his hand and said, "I see a bra!" It was all the teacher could do not to laugh herself!!! gotta love him - or else I'd be insane!!! Hope you're good!!
And then we talked on the phone...
My nephew gave me the BIGGEST reason to NOT give Jimmy the "excuse" to not let him do homework (or any other task at hand.) He told me, "If someone had told me that I didn't have to do homework when I was "high", then I would have eaten candy to make me high so I wouldn't have had to do it."
Now, keep in mind, that my nephew is among the BEST of the people I know. Since he was 4 years old, he was a pleasure to have a conversation with. When he was 10 (pre diagnosis) he played sports with a broken arm, because, if your coach tells you to get up and get back in the game, well, that's what you do!! He even finished the game!! He does what is expected of him - period. He's an awesome individual, and I hope my son can learn all he has to offer!!
So, do I let him not do the work? I don't think so. I hear it in my future if I do... It might sound something like this: "Mom, I can't empty the dishwasher because I'm high." or, "Mom, I can't do my homework because I'm high." Or, "Mom, I can't put my clothes in the laundry because I'm high." All along while he's thinking, "Mom, woohoo, thank god I'm high so I don't have to do what I need to do!!!"
I can't take the chance - can I? I don't think so... Would love some back up... I just hated how he was embarrassed to hand in his homework. As "Jimmy-ish" as he is, he does take some pride in his homework...
To be continued...
Peace,
June
And then we talked on the phone...
My nephew gave me the BIGGEST reason to NOT give Jimmy the "excuse" to not let him do homework (or any other task at hand.) He told me, "If someone had told me that I didn't have to do homework when I was "high", then I would have eaten candy to make me high so I wouldn't have had to do it."
Now, keep in mind, that my nephew is among the BEST of the people I know. Since he was 4 years old, he was a pleasure to have a conversation with. When he was 10 (pre diagnosis) he played sports with a broken arm, because, if your coach tells you to get up and get back in the game, well, that's what you do!! He even finished the game!! He does what is expected of him - period. He's an awesome individual, and I hope my son can learn all he has to offer!!
So, do I let him not do the work? I don't think so. I hear it in my future if I do... It might sound something like this: "Mom, I can't empty the dishwasher because I'm high." or, "Mom, I can't do my homework because I'm high." Or, "Mom, I can't put my clothes in the laundry because I'm high." All along while he's thinking, "Mom, woohoo, thank god I'm high so I don't have to do what I need to do!!!"
I can't take the chance - can I? I don't think so... Would love some back up... I just hated how he was embarrassed to hand in his homework. As "Jimmy-ish" as he is, he does take some pride in his homework...
To be continued...
Peace,
June
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