Sunday, December 14, 2008

Week Re-Cap.....

One day this week I had J.J. all set up eating his lunch. I had already bolused, so I got in the shower. We were rushing to go somewhere, so I was a little preoccupied. I didn't think to check whether he ate or not. I mean, the kid ALWAYS eats his food!! So here I sit down to shut down my laptop and what do I see? A PLATE FULL OF FOOD!!!

I called J.J. and asked him why he only ate half of his food. He said his sisters made him mad, so he went to his room. YIKES!! He also said he didn't like the breaded mozzarella sticks. Hey, no problem about not liking something.....BUT.....I NEED TO KNOW!!! So he sat and ate the rest of the food he liked while I looked for something that was about 7 carbs to account for the mozzarella stick.

While he's eating the 7 gram fruit bar he tells me his knees hurt and he doesn't feel good. JUST KEEP EATING, BUD, JUST KEEP EATING!!

The second mishap was Friday night. I had taken the kids to a friends house so I could surprise Jason with an empty house and a nice dinner. ( that hasn't happened in 15 years!!) I brought with me a box of Pizza Rolls so they would have an easy time counting carbs for J.J. I told Jess to call if she had any problems. We didn't receive a call so we assumed all was well.

When Jason picked up the children, Jess said she counted up 64 carbs and put it in the Bolus Wizard and all was good. NO PROBLEMS!!! Ahhh......but we knew there was a problem when we checked his blood and he was 381. We looked back at the bolus history and it didn't show she had dosed for his dinner. It appears she forgot to push the ACT button that one last time.

That's the thing about using the Bolus Wizard on the Medtronic pump....there are so many screens to go through and just when you think you've approved the dose and its doing its thing.....there is one last final push of a button. I've forgotten twice already!! I know better now when it does it's little doot-dooooot-doot warning at me. But sometimes I don't always hear it. Jess heard it, but had no idea what it was for. Oh happens.....we learn to take note of it and move on. He came down by the morning and all was well.

I thought a lot this week about how the fight for my sons health means I can never give up. To "manage" means I'm always TRYING to be on top of things. There is no rest with this disease. Oh, I know NOW that I can't be 100% perfect....ummm right now I can't even get to the 50% range. I can only do so much. But the fact still remains we will continue to be vigilant in the management and try our best to notice when we need course adjustments.

This week it dawned on me that he was going high in the afternoons or pre-dinner checks. I decided to plug in the meters to the computer and see what kind of numbers they pooped out. I downloaded the first one and was blown away by the pre-dinner percentage for the past week. It was a whopping 0%!!! That means we were in target range 0 times......big goose egg. I told hubby and was ranting on and on about it, when I looked down and noticed I had one more meter to download....ooops!!

When I downloaded the second meter it had 11% ....a little better, but still in need of a course adjustment. We decided to set a temp basal in the afternoons for a few days to see if that would help. If that did the trick we would go ahead and change his basals. So far it looks like it's doing the trick.

Illness Looming
I know I sound like a broken record...but.....We have not had a major sickness in this house since J.J. was diagnosed. Blessing to be sure. Sarah, however, came down with a stomach bug yesterday. I spent a few hours gathering all my information about managing vomiting and diabetes. It won't be easy and there will be a lot of new, weird scenarios I'm sure. I know I can't really prepare. I can only go through the illness to really know how to deal with it, but at least all the information is gathered and I can try my best. Thankfully the docs are on call 24/7 & beg us to call ASAP when an illness arises....especially our first. They'll be there to help us walk through it.

More Soul Food
I was visiting a church this week and noticed a booklet in their information center. Well, actually I didn't notice it, hubby pointed it out to me. The title was "Creations of God Impacted by Disability: One Mother's Thoughts" by Janet Lacher. The author's son was diagnosed with infantile spasms, a catastrophic form of epilepsy at the age of 7 months. She wrote a little booklet to help her congregation understand the issues parents of disabled children face and how the church body has helped them and can in turn help others in similar circumstances.

She had 4 major issues that parents face. The first is ongoing loss. Mainly it's the ongoing realization of how different the child's life will be, and thus your life. Life will have to change and at each developmental stage comes ongoing challenges. There are many losses a person could list depending on the severity of the "disability". Diabetes, is minor compared to say a brain injury....or maybe childhood cancer. So our list of "losses" may be less, but they are still there nonetheless.

The second issue is fear. This is ongoing as well. Fears of complications. Fears of finances. Fears of isolation or abandonment as "people may grow weary of ongoing needs". Fears for the future. Fears of such a drastic world break down that I won't be able to get insulin to keep J.J. alive. I face all these fears and have to constantly learn how to trust God with them.

The third issue is the "nuts and bolts" of just living with the childs "disability" from day to day. Ahh....gee....don't we know this one too well!! With diabetes there is a ton of "nuts and bolts".

The fourth issue "involves the myriad of decisions that must be made". We are faced constantly with decisions. Daily, seemingly insignificant decisions to much bigger "treatment" decisions. To financial, insurance decisions. So many decisions that need to be made.

After reading these issues I realized again that I'm "normal" for someone encountering a childhood "disability". After listing the issues she emphasizes the need to be thankful, and be diligent to be thankful lest we get sucked into despair. Despair can come easy, and it can be constantly wanting to drag us down. A spirit of thankfulness is soooooo needed!!

Finally she lists ways the church has ministered to their family. These are descriptive, yet also prescriptive in that they can help people see how they can minister to others dealing with a childhood illness. I'll try to just list them quickly.....

1. Framework---a solid Biblical foundation is key!
2. Pastoral Care---this section was the most eye opening for me. She describes the need for couples to have the care and support of a pastor to work through their grief. How couples are so vulnerable at this time. She gives the divorce rate of 85-90%---higher than I had heard.
3. Small Groups--being able to get deeper into each others lives.
4. Good Friends---friends that don't mind a 3 am call, willing to listen, cry with, help and important!
5. Words of Blessing---"Be quick to listen and SLOW to give advice"--YES, YES, and again I say YES!!
6. Actions of Blessing--caring for the other children in the family, meals, house cleaning etc.
7. Attitudes--Let us see these blessed children as God sees them.....the fingerprints of God!
8. Prayer---not just physical healing but of spiritual healing and blessing.

O.K....silly me....after writing all of that I realized that the church had a full copy of the booklet online. I should've sent you there in the first place. If you want to read the booklet click on the link above and you'll be able to get a PDF file from that page. If it the link doesn't work leave a comment with an e-mail address and I'll e-mail you a copy!:-)

Overall the booklet was the soul food I needed this week. It also had Jason and I talking about how inadequately we were prepared for the mental....emotional....spiritual....aspects of this disease. I remember only one comment from the CDE about the grief, but that was it. We wished we would've had more warning....however, we're not sure we would've HEARD it, nor understood. Kind of like two lovebirds about to get married. They can go through marriage counseling before the ceremony, but they don't really hear it or pay attention. They're too lovestruck. How do we know that? Jason and I watched our wedding video Friday night and are just NOW after 16 1/2 years starting to "GET" what our pastor was saying to us.:)

Sorry for the long post....maybe next week I'll be able to write small quick notes instead of long notes!

Happy week all!!!

1 comment:

Kylie said...

Thank you so much for the link, I'm going to download and read.

It's funny, I said the exact same thing to Sam (my husband) the other day about how frightened I am now of some kind of catastrophic world event and how would we get Lilly the insulin she needed.

I really think I'm actually just getting into the grief process. We're only about 45 days post diagnosis, so I think I haven't even begun to realize the emotional toll of everything.

Reading blogs like yours are helping me see that I'm normal in my thought processes, so thank you for being so candid and honest.

Have a Merry Christmas :)

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