Tuesday, March 9, 2010

Diabetes is like riding a roller coaster ...

You go up and you go down.  You look for the even places and sometimes you just want off of the ride. 

These last few days have been ones of both ups and downs.  Yesterday, we had a visit with a rep from a pump company.  Joshua picked a pump that he thought he would like to try, so the rep came out to our home to talk with us.  She showed us the pump and let us play with it to better see the features. 

This is the one that Joshua has picked.  Animas One -touch Ping.  One picture is of the pump (the one with the darker screen) and the other picture is the glucometer.

She also brought out an infusion set.  For Joshua to try.  He was not all that thrilled about the idea.  Who can blame it.  The rep told him that this was a hurdle that he needed to get over so that he wouldn't fear it - and she was right.  We learned how to "cock" the set and then push it to get the small line inserted into his arm.  She told me that she couldn't do it as she wasn't a CDE (Certified Diabetes Educatory) or a nurse.  So it was my turn.  On the first try.  Nothing.  I didn't push hard enough.  I tried a few more times in the arm to get a feel for it and then again on Joshua's arm.

He said it didn't hurt at all!  Yippee!!!  I was so glad to hear that and know that he was glad that something he had feared had turned out to be not a big deal.  Whew!  Don't we wish it always ended that way?  How often though is it true that our fears are much worse than the reality?

We got a call later in the afternoon to let us know that they had received the paperwork we had signed that morning!  Love that it is moving quickly!

Today was our turn at Diabetes Clinic.  We have seen different people many of the times we have been there.  Unfortunately, we have never seen the doctor that we loved when Joshua was in the hospital.  I keep hoping to get an appointment with her!  Today was a new doctor who was nice and friendly.  I will confess though that a number of the things that she said to me left me feeling inadequate and that I wasn't doing all that I could or should be doing.  I left feeling pretty discouraged.

She was concerned about Joshua's weight.  He hasn't gained much in the last 8 months.  He does eat well though.  All of my children are on the slim side and I don't think Joshua will be any different.  She thought we needed to talk with a dietician.  We met with her briefly and she suggested he drink one more cup of milk per day.  She also took a couple of pages of our food log to analyze.  Not sure they were two stellar days, but oh well. 

The doctor was also concerned that he wasn't giving his own shots.  We use needles - not a pen - based on Joshua's choice.  The pen would be much easier to administer.  I'm not really worried that he isn't doing his own shots.  He doesn't want to.  Honestly, he has the rest of his life to do that!  If I can take some of the burden of this disease and help manage it for him, I'm happy to do that.  I know that other children do their own shots and if that works well for them, then that is great.  This is working for us.  I think since we'll be switching to the pump soon, that there won't be a need for as many shots either. 

One of the books I have read about diabetes care actually encouraged the parents to take on much of the care when the child was younger as this seemed to help decrease some of the rebellion of the disease that often happens in the teen years when they are tired of having and managing this relentless disease.

There were other questions too.  Did he wear his medic alert bracelet?  Yes, sometimes, but not all the time.  I told her that he was with me most of the time.  She then asked what if something happened to you?  Do we really want to ask this in front of a child?  She said there might be a time when I couldn't speak for him.  Joshua stated that he could speak for himself. 

None of this was huge and I do think she was trying to be nice and was just asking questions.  It's good for me to think about these things.  I'm trying to learn.  I'm not sure why I left feeling so discouraged, but I did.  Oh, and his A1C number (measure of his blood glucose over the last 3 months) wasn't nearly as good as I had hoped that it might be.  It is better than last time, but still higher that I had thought it would be.  It feels like a "report card" on how well we have managed things - or not.  I have to remind myself that we are doing the best that we can and that there is a lot to this disease that is really out of our control.

We did have another up today too.  I talked with the pump rep again and found out that his pump is covered 100 percent by insurance!  Yippee!!!  Gotta like having met all the deductibles (though I wish we hadn't had to visit so many drs this year). 

We are hoping to have the pump in another week or so.  Then we'll go to a class to learn how to use it.  Shouldn't be too much longer.

As I reflect on the day, I try to find things for which to be thankful.  I'm thankful we have access to quality health care.  I'm thankful we have meds to keep him healthy and alive.  I'm thankful that Joshua is a brave and strong young man who is learning hard things at an early age.  I pray that God would use this to mold him and strengthen him.  I'm thankful that God is walking with us every step of the way!

I am also reminded that I am seeking to please just One.  I need not worry about the approval of others (but do we ever stop wanting that?).  My hope is in Him.  I need to also find encouragement from Him.  So many lessons each day for me.