Embracing Life & the Child with the Disease

It’s just 1 number

Our quarterly endocrinologist appointment was today.  The post that I found on my wall first thing this morning from a wonderful T1 momma friend, Tina B, ” . . . it’s just one number among many numbers that we deal with day in and day out.”  However, it’s a number that gives us an indicator of the direction of our or our child’s blood glucose pattern over the last three months.  Another T1 mom, Lorraine Sisto , posted this golden nugget on my wall this morning as well, “The numbers are only information to use to decide on future actions – that’s it. I know it’s hard, but try not to think of them as an evaluation of the past, but as direction for the future.”

So, I had my head in the right place, prepared for whatever number came my way.  I know his numbers have been really good until the last two weeks.  BUT, I suppose it takes a lot more than a few weeks to hurt your a1c score.   Our number came up 6.8; and I almost cried.  I was so relieved.  Since we don’t have a CGM and typically don’t check sugars but about 4-6 times a day, I often wonder what it does in the in-between times.  And then I wondered how close our meters are compared to the meters used at the office or the blood test.  But at least for three more months, I can relax about the a1c test.

Our a1c history so far:

Date                                       a1c                     **average blood glucose

December 17                          >14                                     over 355

February 20                             8.9                                     200ish

May 20                                   6.8                                      165ish

**There are so many varying charts . . . but this gives a good idea

But there was some concern about his numbers the last two weeks.  She took a lot of time looking at his blood glucose log.  She asked about numbers that maybe I hadn’t recorded that weren’t at meal times or bedtime.  We had some numbers take a dive after being really high in a very short time.  She started asking about abdominal pain.  I don’t think there has been any, really.  Every now and then he complains of a stomach ache, but I don’t think any more than any other child.  And she asked if it ever burns or tastes badly when he burps (an acid reflux type of thing, in our house, we call it a vurp – vomit/burp).  He has done that a few times lately.  And we have had trouble with his feet being dry and cracked.  She said it wasn’t a fungus, just severe dryness.  Then Ryan complained about his legs hurting . . . first I had heard of this.  So, I’m not really sure if these are symptoms to be concerned with.  All of them can be explained away as diabetes or just simply normal.  She said that Dr. White, our regular endo (we see his nurse practitioner every other visit), would do a Celiac and thyroid screening at a year and then do it annually, but she recommended we just go ahead and do a screening now and just ease our minds.  Well, I’m all for easing my mind, but it won’t be eased until MONDAY. 

But I’m determined to not let it kill the joy of the a1c number.  It was a good report, and I must relish in it for while.   I know it might now always be there and we need to be proud of ourselves.  I’m so proud of the happy boy Ryan is and his understanding heart with all the dailies.  I’m watching him now play with Ethan.  He looks like such a mini-me of my oldest boy.  He’s smiling and laughing and making jokes with Ethan, thinking that he’s as big as he is.  That’s what really matters, regardless of the number.  If he is content and still a child with very few cares in the world.


Comments on: "It’s just 1 number" (3)

  1. Lorraine said:

    That’s really great news! Obviously all your efforts are paying off. I hope the testing all comes back clear. I can appreciate how hard the wait is. Keep busy this weekend. 🙂

  2. You guys are doing amazing over there!!! Go Team Ryan!!!!!

    My Adalyne has been dx for almost 5 years (age 24 months). She didn’t have much (if any!) honeymoon — I had avoided her symptoms for about 6 months before her dx. By the time help arrived, her little pancreas was all putterred out.

    For the FIRST time since her dx, we saw an A1c under 7 (6.8 to be exact — look, they’re twins!!) just this month. It took me 2 years to get her under 8…and we’ve hovered in the low 7’s since then.

    It really is JUST a number. I know it feels like SO MUCH more, but it isn’t. It’s just a map — a compass — a GPS. Oh, but…RELISH your 6.8, my friend!!!!!

    Addy was also dx with celiac a few years after T1. Her primary symptoms were random unexplained diarrhea, tummy aches, head aches, and leg cramps. She had those symptoms for YEARS — and tested negative 4 times before her labs were positive at the end of 2008.

    Following the blood work, her diagnosis was confirmed via endoscopic biopsy. On a side note, I have had **ZERO** symptoms, but asked for a screening with a routine physical because celiac tends to be genetic. and both my mother and grandmother have had lots of GI issues with no confirmed dx and very vague answers….my labs were positive and I had a confirmation endoscopy in 9/09! NO SYMPTOMS!!!!

    If you need to know more about the gluten free diet, I’m here.

    In the meantime, I’ll be praying for you guys!

  3. Yea! I love you all and pray for Ryan every day. So glad the Lord is watching over him (and you).

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