Saturday, November 29, 2008

Long Overdue Update....

I so apologize for not updating sooner. Unfortunately my mind is full of junk that I'd rather just trash, but it's hard to incinerate. Makes it hard to concentrate to write. But I will give it a whirl today, and maybe catch ya'll up on what's going on here.

J.J.'s tape allergy seems to have gotten a little better. I have to be militant in changing his site every two days. We noticed that when he went swimming he ended up not having hives when the site came off. I noticed that when the site was off after swimming there was no stickiness left, so obviously no residue to cause a reaction with the skin. That got me thinking that possibly just changing and washing more often may help. Even though the site may still deliver insulin effectively, it will have to come off because of his skin reactions. Bummer....because of cost...but if it's what needs to be done, then so be it.

Hubby surprised me with a stay at a Bed & Breakfast last weekend. If you're ever near MN and want a nice romantic getaway try the Rosewood, in Hastings, MN!! It was our first night away since J.J.'s diagnosis. The grandparents were here, but we prepared our oldest daughter for the night checks. It really tugged at my heartstrings. She just seems too young to be taking on this burden even if it is only for one night. (For her take on the night... check here!!)

Thankfully his numbers weren't too whacko while we were gone, and we were able to "manage" via phone....15 calls in a 24 hour period to be exact. Wouldn't seem like much of a break, but it was.....for me anyway.....Jason took ALL the calls!!:-)

The night before we left Jess was still up when I did my 11ish check so I had her do it. J.J. wasn't low, but not high enough to trust him to NOT go low. So I had her give him some milk. As I walked out I said "It's like having a really big baby.":(

Giving milk to him at night is always bittersweet. It often reminds me of feeding him when he was a baby, which brings back floods of memories. Yet, it also makes my heart scream...."I SHOULDN'T BE NIGHT FEEDING MY 5 YEAR OLD!!" He's too old for me to be giving him milk. BTW....he acts so much like an infant when we do give him milk at night. He barely wakes up, starts sucking (we use a sippy lid to avoid spills), and then goes right back to sleep. Doesn't remember it at all.

Last week J.J. received a new pump. It's a 522...barely used. The day it came Jason noticed the old pump had a crack and a leak in it!! So it was a blessing to get the "new" one. We started using the newer features right away. So far it's working great, and we are thankful to have another "cheap" solution.

As far as his BG numbers.....they've been O.K. We have reached a better level of control and feel we are coming out of the pump learning curve fog. Obviously we still have so much to learn, but we aren't seeing incredibly high numbers, and when we do reach the 300's every now and then we know it's o.k. to give a shot right away if it eases our minds. I still need to take more time in evaluating the numbers and adjusting doses and possibly basals, but so far we'll stay on this ledge before we climb anymore. Our bodies and brains can only take so much at any time. We feel like we need time for this level to soak in, then we can move on to the next. So eventually I'll download his meters and his pump and do some more tweaking.

One night last week Jason and I had our signals mixed up or something and we both ended up near J.J.'s bedroom with a meter and headlight. Hubby says to me, "Did you think a year ago that this would be our nighttime apparel?" NOPE!! Ended up J.J. was up anyway, so we snapped a photo.

Another thing I've noticed about our new life is where I find diabetic supplies. The other morning I was preparing for a shower when I looked down to find an old infusion site on a ledge in the shower!! (Notice little Herbie Husker?? GO BIG RED!!:-)


Thanksgiving Day we ended up dosing for many lows. He didn't eat much and played hard. I'm not sure about ya'll, but I'd rather catch minor lows, than deal with outrageous highs. But then again right now he doesn't get the real scary low reactions, so I know for some people that may be flipped. The funny thing on this day was our hostess made an apple pie without added sugar...she used cinnamon and agave nectar....it was really good. BUT.....What does J.J. pick for his choice of pie? PUMPKIN!!! I said, "J.J. don't you want to try this apple pie?" He says, "NO! I don't like apple pie!!" Oh well.....we dosed for the pumpkin....not a big deal.

On Thanksgiving we were asked to share what we were thankful for. I was afraid we would do that....not that I wouldn't have done it here if I were hosting....but I knew I would have to answer. And it's not that I'm NOT thankful, I am....but it's a different type of thankful that is hard to describe without a lot of tears. So I didn't get out much because my mind was so full...if that makes much sense, but I did get out something.

Basically I am so thankful that God is good. He's sustained us through so much this year. It's been difficult....many trials, many screw-up's and many lessons, but I can still proclaim that God is good. He is to me a ROCK!! On the SOLID ROCK I STAND....o.k...sometimes I wasn't STANDING......sometimes I was flat on my face in tears.....but I am still being supported by THE ROCK!!

We are gearing up for our ONE YEAR anniversary. I'm not sure what to call it....a diagnosiversary? What an interesting year......gee how should we celebrate? Should we celebrate? Hmm.......I wonder what others do on the big "D" day anniversary?

4 comments:

Kelly said...

We remember each year by talking about how lucky we are to have Diabetes and not a terminal disease like so many others. We also talk trash about Diabetes too, but in the end we always try to remember that we are amazing for what we go through everyday. Our 2yr for Maddison is on the 4th of December. You can bet we will still have a big yummy dessert to say TAKE THIS DIABETES!

Anonymous said...

That nighttime picture is TOO CUTE!

I also find sites all the time in the bathroom - especially on the shower ledge because I tend to change sites right after a shower.

Scott K. Johnson said...

I don't know my exact date, but I do celebrate the general time. I figure that I deserve a tip of the hat for successfully navigating all of the challenges through the past year, and acknowledge that I will do even better for the coming year.

It is hard work this diabetes stuff!

Cara said...

Your daughter's blog was touching. I often think about how my parents were effected by my diabetes, but I forget about my friends and other caregivers. She's a special girl.
By the way, I love the head lamps! :P

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