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.

Please consider Jenna Karpowich

for the honor of Sibling of the Year.

Thank you from the bottom of my heart.

June Karpowich

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!!!

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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