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
