Saturday, July 28, 2012

Cablevision comes to the house today, and the technician asks, "So who is the diabetic?"  I was caught off guard, but Jimmy answered right away in a loud, confident voice, "I AM! Do you have diabetes, too?"

Turns out that he saw Jimmy's  blood glucose meter (aka tester) on the table... He is also a type 1 diabetic who was diagnosed at 10.  He's now 37, married, 2 children, and in total control of his health.  Who does he have to thank?  His family and CAMP NEJEDA!!!

I'm so thankful for the family weekends at Camp Nejeda both last year and this year on Father's Day Weekends... 2 AMAZING experiences and need blog posts to describe... but in the meantime, Jimmy was granted a spot this summer for one week at Camp Nejeda's sleep away camp!!!!! Although I was a basket case while he was gone (missing him, etc...), I was so proud of him that he went! All I got when I dropped him off was, "Bye Mom!" with a smile and a wave - just like that, he was off!

So much more to come about camp... but his face in this picture says it all (he's on the left :)
Also, check out this note he sent us from camp:

(Translation: "I am having a great time at camp. Love Jimmy. Thank you Dad for paying for this."

Gotta love him!!!
Peace, June

Monday, January 16, 2012

time goes by

I don't know how it is that Jimmy is 7, Jenna is 12, and that it's 2012 already! I know it's cliche, but I thought they were just babies!

Jenna and I took a trip down memory lane tonight - she sprung it on me that she needed a picture of her as a baby and also in kindergarten. So there we are, reminiscing about her baby years - going through the albums and noticing how much Jimmy looks like her - and noticing that there aren't too many photos of 'just Jenna' since Jimmy came along!! And as Jenna pointed out, that it's always been that way - wherever she is, he's there, too! She was ok with it - for a minute I thought she was going to complain about it. All she asked was, "Mom, was it easy when it was just me?"

She's such a good kid. She knows it's hard now. Diabetes is hard. I told her that it was hard work with just her - but I love it, and that she was my only priority then. Now, she shares me with her brother - but that she was lucky to have me all to herself for almost 5 years before Jimmy came along. She agreed, and added, "I'm glad Jimmy is here."

Me too. Like I said, she's a good kid!

Jimmy mentioned to me on Friday that he remembers playing video games in the hospital when he was first diagnosed. I'm relieved to know that of all the bad stuff he went through in the hospital, that he remembers the good stuff!!!

Christmas was difficult. The time spent sitting in the car to go visiting doesn't go over well with blood sugars. The tempting sweets over the holidays is just ridiculous. Being off schedule does a number on Jimmy's numbers...

I find it amazing that his A1C was actually lower than it was 3 months ago since the holiday break was so "off."

We're hovering at an 8.2 now - down from an 8.5.

We've made the necessary changes now, but I'm afraid that he's sitting too low lately. He has a low almost every day for the last 2 weeks. Need to contact the dr. (aka Rachel) to see what we should do.

On another note, we had a crappy Friday the 13th. It was Thursday night, and I waited until he fell asleep to change his site (it's just easier than fighting him - which isn't always the case, but when he fights, it can be ugly. So when I can, I'll just do it when he's asleep.)

I changed it, but in the morning, he was over 200. I feared that Friday the 13th was getting us, but bolused him anyway, covered for breakfast, and went off to school (keeping my fingers crossed.)

Well, don't you know I got a call from the school nurse that Jimmy was in the 400's with keytones.

Panic mode.

Ok, here we go.
1. Correct him with a shot of 1 and 1/2 times the correction with the novalog pen. oops, he flinched, and didn't get the entire correction...

2. Give a 2nd novalog pen shot to guess what he didn't get and make up for it...

3. Then he decides he's hungry. Ok, so now we need to give another 1 unit, except - OH NO - there are no more novalog pen nano needles, AND he needs a new site!!!

4. Locate the original syringes in the nurse's office and chase Jimmy around until he agrees to have the syringe to cover for his yogurt and chips he wanted to have. Finally gave him the shot, and he doesn't want the snack anymore. Really???

5. Convinced him to eat the snack.

6. Still high, so I decide to to take him home and change the site, only to realize the site I put in the night before was the last site until the delivery on Saturday - which wasn't soon enough.

7. Communicating with the Molly Center about Jimmy's keytone status, they told me to come on over to see them since they have some extra sites on hand. Thank goodness!!! So I get there, and make a mental note that I'll need gas before I get home.

8. Leave the Molly Center, head to the bank, since Jimmy wants pizza from his favorite place, but they only take cash - so off to the bank. The plan was that I'd get the cash, get the pizza, then go home to change his site and eat.

9. Best laid plans... as we're leaving the bank, my car (which said that I still had 5 miles to go) ran out of gas.

10. Can't find my AAA card, so I call Jim. He has it and gives me the number - which I call, and discover that my phone battery is low (I had let Jimmy play with it as a distraction in the nurse's office) and the phone then actually shuts off. So there I am, leaving the bank, blocking the exit with my dead car. Angry people honking at me, yelling at me, etc... Happy Friday the 13th.

11. Now keep in mind that Friday morning, it was actually nice out. However by about noon, it was a blustering, windy, freezing, flurries falling day. We hadn't had our heavy winter coats with us because I'm evidently a bad mom who doesn't read the forecast! I wasn't sure what to do...

12. So, already feeling like the worst mom ever, we go to the nearest safe and warm place - Starbucks (the bank was farther down the strip mall, and Jimmy was soooo cold!!!) Luckily, the manager took pity on me and offered to watch Jimmy so I could go get gas. I was sure she was going to call DYFS on me for not having a winter coat for him and for abandoning my child. But I go across the street to get gas. Praying with every footstep that I was doing the right thing.

13. (13 being the final step in my awful ordeal) I have to pay extra for a gas can, even though the gas station attendant can see my car from his station - he claimed that I wouldn't bring it back... So freezing my butt off, I run the gas over to pick up Jimmy from Starbucks (to find out that the manager had given Jimmy a cup of hot chocolate - WITH WHIPPED CREAM!!!!!!!! I guess I didn't mention that he was a diabetic, since I knew he was already high and that he wouldn't go low in the 5 minutes I was across the street getting gas...) Although, I was still incredibly greatful that this kind, angelic person (albeit complete stranger) was nice enough to look after Jimmy for me on what might have been one of my worst days ever!!! So, there we are - getting back to my car - gas can in hand. You'd think that one of the 3 security guards directing traffic to avoid my car blocking the exit would have offered to fill my tank with it, but that wasn't the case. They actually watched me as I tried to figure it out. I was freezing, my fingers were numb, and I couldn't get the cap off. It was kind of like a water bottle that you need to pry off the plastic piece before use - so frustrating!!! Well, no thanks to them, I got it off, filled the car, and Jimmy and I were off.

We did it.
We survived Friday the 13th.
And it was only 1:30 in the afternoon!!!
What else would the day have in store for me???

Luckily, Jimmy's keytones were gone by the time I got home, and despite the major amounts of carbs in the hot chocolate, I was able to correct that high in a reasonable amount of time.

Always something with diabetes - at least this time, I was able to blame something else - namely Friday the 13th. I'll be better prepared next time - I hear there are 2 more this year - Wish me luck!!


Sunday, December 4, 2011

saying goodnight

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?


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.

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.

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.

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....

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.

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.

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:

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!

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.


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...