Thursday, June 10, 2010

Diabetes Clinic

I'm thankful we didn't have much planned this week.  Our week has needed a lot of empty spaces - time to spend being with and helping friends and also at the doctor's office. 

Joshua had diabetes clinic on Tuesday.  We are getting close to the one year mark.  Not a date to celebrate, but it is one that is marked in my mind and heart nonetheless.  More on that later.

As we were waiting at the clinic, our favorite doctor stopped by the door.  She is the doctor that worked with us when Joshua was hospitalized last year at diagnosis.  She is wonderful!!!  We have yet to see her at any of our clinic visits so it was really nice to see her.  I hopped up and gave her a hug.  I then asked if she was here to see us and was excited to hear her say yes!  Our visit was scheduled with one of the attending doctors and evidently she signed up for us when she saw us on the list!  I was thrilled. 

It was especially nice since this ended up being a long visit.  (We were there for about 2.5 hours.)  She talked with us about how things were going and was as always - very encouraging!  Did I mention that she is wonderful?

Joshua's A1c was disappointing to me.  It was an 8.7.  No improvement since the last time.  This number measures his blood sugars over the last 3 months.  He has been on the pump now for 2 months.  She told me that she was pleased with his numbers - though he does still have bad numbers at times.  This disease can be so hard to "control" (and I do use that word very loosely). 

The attending doctor also came in.  We talked about ways to try to improve his numbers.  One way is to get a good reading on his numbers at all points of the day/night so that a good basal rate can be set.  This is the dose of insulin that his body receives throughout the day.  It can be adjusted so that he gets more or less depending on how his body handles things.  The first rates to check would be the ones during his sleep.  This would mean eating dinner, no snack at bedtime (or a no carb snack) and then measuring his blood glucose every 2 hours through the night.  (We could do this in stages and not all the same night.  It would need to be done more than one night too.)  I've told them that he spikes in the middle of the night - always has.  Well, except for 1 or 2 times when he was low.  It's those times that keep us checking in the middle of the night as he tends to drop as he heads toward morning.  In order to set up a good rate, we need a better picture of what is happening at each hour.   I'm typing all of this out and wondering now if anyone really wants ALL this detail!  LOL  I'll stop.

Joshua also had some other testing done.  Screens for thyroid, celiac and cholesterol.  Due to the diabetes, he is at greater risk for problems in these areas and so will have testing done yearly to try to detect any problems.  Celiac is something I wonder about off and on.  Eliana is also at greater risk for this due to having Down syndrome.  I've also heard that this can be an issue for kids with ADHD.  So, three of my kids with a greater "risk" of having issues.  It has made me wonder if I  should go ahead and make dietary changes.  Honestly, the thought is a little overwhelming to me. 

Food is on my list of things "to do" this summer.  I want to work on experimenting with greater foods for both Eliana and Daniel.  Both have made great progress, but still have a ways to go.  I'd love a better list of snack options - real food and not convenience items for all of us.  I'm hoping we'll be able to make more trips to the Farmer's Market - I love fresh produce!  Food, for better or worse, is more than just fixing something to eat for many of my children.  We all have a lot to learn and I want to do my part in helping my children to be healthy and to be able to make healthy choices - not just now, but hopefully for life. 

Anyway, our visit went well.  We'll hopefully hear back in a week or so the results of the testing.  I'm thankful for the surprise of seeing this doctor.  :-) 

I'm still working on the give-away.  Haven't figured out how to post the chip-in - but have some people trying to help me.  If anyone knows how to do this, please let me know.

Blessings

Leslie

6 comments:

  1. I am so glad that you were able to see a doctor that you like so much. It is so important to have people around you that you trust. The food issues are hard. We tried being gluten free 100% for about 10 months. I did see sma;; improvements in sensory and behavoir but then we started to slip. It is a really hard lifestyle change. Right now we strive for very little gluten and dairy. We eat as much organic meat and produce as possible.
    I pray that you find the right foods for your family.
    Blessings,
    Dawn

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  2. Glad things are going well. I can't imagine what a tough transition it is/has been for you guys getting to know diabetes.

    Hey, check out my girl today, I'm relatively proud of the photo. (I know, shameless huh!) http://photos.theshadesofpink.com/2010/06/365-30-l2l.html

    Have a great day Leslie, we are praying for you!

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  3. I didn't realize that your son Joshua has Type 1 diabetes. I've only been following your blog for a short time.
    I'd like to suggest that you check out a book called Dr. Berstein's Diabetes Solutions by Richard Bernstein. Here is a link to his book:
    http://diabetes-book.com/
    He's a Type 1 who has been living with it for 64 years, so he's up there in age. He's an engineer by training who learned how to keep blood sugars low and stable, and then went back to medical school to become a devoted diabetes doctor. My mother (a Type 2 now on insulin) gave me his book when I was diagnosed with Type 2 during a pregnancy (and the diabetes did not go away post pregnancy) and it has been a life saver. I realize Type 1 and Type 2 are VERY different, with Type 1 being far harder to cope with. The Bernstein book is extremely meticulous on a host of subjects, and it has helped me tremendously in eating properly and working to keep my blood sugars down
    God bless...such a hard road. We don't have any serious medical problems like this at home and my heart goes out to you. I'm also in awe of all you do given your children's special needs. God is good to give us the strength we need. I totally agree that big dietary changes are tough. May God give you wisdom.
    God bless, Laraba

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  4. Leslie, I really appreciate reading all of this. I find it very encouraging the way you approach things. Isn't it amazing how many autoimmune illnesses are related? I began finding out when my thyroid stopped working. I was really stunned and wished I'd known more about it BEFORE it happened! Food is a challenge here. I try to stay gluten free but it is hard in this present food culture we live in, and especially hard to do "this" for some people and "that" for the others! We should have a food clinic this upcoming school year -- let the moms each share a recipe that would fit several specific needs or something!

    Love you!
    Lynn

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  5. I am so in awe of you and everything that you handle on a daily basis with such grace. She looked wonderful in her little outfit for the pictures. I am sure the calendar will turn out just adorable. Hope you had a relaxing weekend.
    Blessings
    Diane

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  6. Thank you friends for your encouragement and your prayers!

    Dawn - I'm sorry that you didn't see much improvement. That is a lot of work for not much results.

    Laraba - Thank you for the book suggestion. Thank you too for the prayers. We definitely need wisdom!

    Lynn - Hugs friend. I'm sorry you are dealing with stuff too. Food stuff just is a challenge. You handle it with grace.

    Diane and Sheri - thank you both for your sweet words too!

    I'm thankful for all of you!

    Love
    Leslie

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