Jimmy Blog: April 2011

Thursday, April 7, 2011

Homework while high..

The first image is what Jimmy is capable of for a homework assignment... You can even see the smiley face that his teacher gave him! It's not perfect, but it's close to his best!! The second image is what his homework looks like when his blood glucose level is high (over 300...)...

Not pretty, huh? So, I contacted my nephew to see if he had any insight as to what it's like to function with a high bgc... see his response in my next post... quite insightful...

Tuesday, April 5, 2011

A note to Jimmy's Nurse

A note to Jimmy's Molly Center nurse... I just wanted to let you know that I think you are wonderful - you have a way of making us feel that Jimmy is the only patient you care for - even though we know that's not the case... anyway, it's midnight - and I'm just up testing Jimmy - at a whopping 292 - and there's a reason... Here's the background... He woke up at a 123 this morning and had at least 3/4 of a regular size banana at 8a.m. I covered 20 carbs . He felt low just after 9a.m. at school but tested at a 290. At 10 a.m. he was a 168. Had cashews for a snack (his new favorite) and his nurse ONLY covered for the carbs - no correction as per Jimmy's plan. At 10:56 he plummeted to a 59 - but he seemed ok. Was it the fat in the nuts? not sure, so ... 15 carbs of juice and a retest revealed he was only a 62 at 11:11 (15 minutes later.) His nurse gave another juice box, and at 11:27 he was only up to a 93 at which time she gave him a 20 carb snack. Seems to happen lately... Yesterday morning, at 11:30 he was a 90, so he had a decent snack, for which I covered only some of ... thinking he was going to be sitting in church for an hour at 12:30. Then, while in church at 12:45 (Lunch would not be until after mass, where there was to be a basketball ceremony in the gym complete with snacks and pizza at 1:30), he said he felt low. He was a 168, but he insisted he felt low - he even insisted he was dropping - which he seems to be able to recognize when he's trending down (can't wait to start the sensor...). I didn't do anything, but he complained again that he felt low and at 12:59 he was a 159. He INSISTED that he was dropping, so I gave him 1/2 a juice box being that we were in church, and let's face it - you know Jimmy and how it's hard to keep him quiet/entertained/well behaved, etc... , and the 1/2 of a juice box made him feel better. At 1:45, he was a 150 and good to go for lunch. Wondering what's happening with his plummeting at lunchtime... Joann sent us an email form pedsmolly to raise his basal rate at 10 am because she felt he was rising after lunch, but I'm wondering if she only saw the result of us trying to raise him from a low. since it seems to be happening at that time. p.s. I didn't raise his 10 a.m. basal. So. on to today. He had his low (above) and was off to his 2nd school (to which he attends Monday's and Thursday's from noon to 3:30 pm. They are great (but no nurse on site - just loving wonderful teachers who are moms and know Jimmy since way before his diagnosis). They always call me at a moment's notice with a low or a high, or a question and have been so willing and ready to help with his diabetes. Today, I went to cover him at lunch - normal occurrence. He complained that he didn't' want pretzels for his 2pm snack, so I decided to bring him a different snack at 2 (the school is right across the street from mine) - He also needed test strips, so I brought them, too. I'm SO GLAD I went -I got there with is strips and snack and he told me that his site had just come out. He hadn't told his teacher - not sure why - looking in to that... So- because I had a class at 2:15, I decided to cover him via novapen shot for his snack. Then I picked him up at sometime between 3:30 and 4 as usual, and Jenna had piano at 4:30, so by the time she got home after 5 and he wanted a snack, he insisted on another shot and even declared it was time for a pump vacation (a term we introduced if in fact he joins the swim team this summer). Not a chance. I delivered another shot via nova pen since he was quite busy playing outside with the neighborhood kids (we LOVE our block) and he didn't want to take the time to insert a new site. As soon as I could catch him and keep him for a bit, I inserted the new site. A bit later, it was time for dinner - he was a whopping 500 plus. (no keytones.) YIKES! We delivered a bolus, and Jimmy declared he never saw the pump give him a 2.7 before - he said it was a record. Not sure about that, but I repeat, YIKES! So, now at midnight, he's a 292. The pump said to give him 0.9, but I chickened out and gave him 0.6. I'll do my best to check him at 3,but it's already almost 1a.m. My husband's been pretty good at testing him at 3.a.m. and 6:30 a.m., so I'll send you an email in the a.m. with an update. Don't want a low in the middle of the night. He's such a HEAVY sleeper. Ok, have to go to bed - I'm going to try to look into Apidra now... never heard of it. willing to try whatever is best for him. On another note - I'm trying so hard to feed him well - not always easy - trying to give him more complex carbs instead of simple ones... He's 6, so of course it's near impossible. Loves bananas, cashews, yogurt, cheese sticks for snacks, but then there's always the birthday party treats, desserts, grocery store check out line candy, etc... You're right about the glycemic index. I'm learning AND trying. One thing we definitely noticed it that he's always high after pancakes (Aunt Jemima original mix - I know - terrible - and Lite syrup (lower carbs) and bacon - I know it slows down the carb absorption.) Will look into keeping track of foods and carbs and trends - always do it for lunch for his nurse, so why not continue... He's a "grazer" as you mentioned, so it's tough... I'll keep you posted. Thanks so much again for getting back to me not only today, but Friday as well. We thing you're w onderful, and feel so blessed to have you on Jimmy's side!!! Peace, June

Sunday, April 3, 2011

Uncle Ed

Well, one year was uneventful! Which was actually nice! I didn't know what to expect, but it was my dog, Shortstop's birthday, so that was a reason for happiness!!! We played BINGO for family bingo night at school, so it really took our minds off of it!

Still can't believe it's a year...

On another note, here's an email I sent to my uncle updating him on the goings on up here. You can tell from the email that we never get a chance to get together... but I'd love for my kids to get to know their Great Uncle, and Grandma's Little Brother!!

Hi Uncle Ed!!

You asked how I'm doing, well... Here goes...

I'm doing well!! I'm in my 18th year of teaching, and I'm so blessed to have such a great job which I love. I have 2 beautiful and perfect children - Jenna, 11 and Jimmy, 6. We live in lovely River Edge - which is right next to Oradell. We've been in our house for over 6 years now. We moved from Wayne, NJ - which is where I used to teach, but now I'm lucky enough to be teaching in River Edge! The schools are wonderful, and both children are thriving! Their picture from the first day of school this year is attached.

They're gorgeous, if I do say so myself!

I married a wonderful man, Jim, who grew up in River Edge, and whose dad was an All American Basketball player in the 40's (if your dad was the "Babe Ruth of Gymnastics", he was just short of that in the college basketball scene in the 40's.) His name was Anthony "Butch" Karpowich. Jim is the baby of the family, so you and he have that in common - you would love him!!! He's a teacher and a coach, and graduated with an Ed.D. in Education - so now he is "Dr. Karpowich"!

Jenna is 11, and in the 5th grade. She excels in school, and participated in band (she plays drums and piano), is a girl scout, takes hip hop dance, starred in basketball, and is in Gifted and Talented in school!!! Softball is starting now... she hopes to pitch and play shortstop. A righty through and through - you'd be surprised to hear that she bats lefty! With strength on her side, she can really hit! She's a delight, and you would get a kick out of her!!! She's a great combination of a free spirit and go-getter!!!

Jimmy is 6, and his life revolves around sports!! He's taken Kindergarten by storm - and the building is still standing!! Basketball finished up, and he was the tallest in the program - in one of his games, he scored all of the points! Now we're waiting for baseball to start. He's quite big and tall for his age, so it should be an interesting season. We were delivered a blow last April Fool's Day when he was diagnosed with Type 1 Diabetes. It's been a year now, and you would be surprised how advanced treatment options have come over the years compared to "back in the day"... Jimmy wears an insulin pump, and is just about unstoppable with it! It sure beats taking shots! I'm sure you remember Dad's brother, Uncle John... He used to take a shot a day and was totally limited as to what he could eat. Jimmy can eat anything he wants at any time - and the pump delivers the insulin he needs while correcting high blood sugars. He does have his share of high and low blood glucose readings, but his level of care is so much greater than Uncle John's because of the amount of research and knowledge they have now. As of now in the world of Type 1 Diabetes, it is predicted that Jimmy will live within 5 years of his life expectancy - but I'm praying that with the advancements in Diabetes care, that that will change and he will not only live to - but surpass his life expectancy!

When I "friended" your shop, "Tattoo Blues" (at the suggestion of Donna), Heath contacted me... I told him that you were my Uncle, and we started up a Facebook friendship! He even looked into diabetic tattoos for me (the color changes to indicate a high and low blood sugar.) Turns out, its not quite the same as a regular tattoo, and it's still not ready for market... Maybe one day it will be. Jimmy has a cousin (Jim's side of family) who is also a diabetic - I'll treat them to their first tattoos when it comes on the market!!!

I keep a blog of the (literal) ups and downs of life with a diabetic child. You can find it at: http://jimmyjdblog.blogspot.com/p/diagnosis.html I keep it as a way to get my feelings down and to have it for one day when I can go back and see actually happened in our lives with diabetes. It's been such a blur and so very busy, not to mention extremely difficult and emotional. It also keeps friends and family updated.

On another note, it will be one year in June since mom passed. I'm so glad that both my kids got to know her. Jenna remembers her before the Parkinson's took over, and before her wheel chair. Jimmy remembers zooming her around in her wheel chair (I think he thought of it as her race car.) She will always have a place in their hearts and memories, and for that I'm so very thankful. Here's a site I put together so you can see the video tribute I made (it's also on Facebook - if Heath can show it to you on his account.) You can find the site at: http://claireschnakenberg.shutterfly.com/

I hope you are well and enjoying life in Florida. I'd love to hear about what's happening with you if you have some time - and I'd especially love to hear any old stories about mom you might remember! I miss her dearly, and reminisce often with Dad, Jennie, Julie and Tom. She's our biggest cheerleader now from up in heaven!!

Your niece ,

June

Jimmy Blog

Wednesday, April 20, 2011

from my nephew about hw while high...

highs and homework