By the time we arrived at Dr. M's office yesterday I had had decided that whatever "the number" was I'd deal with it and move on.
We went through the usual routine. Riley was weighed and he had his height measured. Then he pricked his finger and the blood was sucked up into something that looks like it should be part of his lego Star Wars collection.
Then, we waited. I wasn't really nervous. I knew there was no need to be. I knew his A1C wasn't any better. I was just hoping it wasn't any worse.
Dr. M walked in and gave me a tight little smile. I knew then that the number wasn't any better.
She went through the usual stuff. She asked about Riley's health and our family's health. She talked with Riley for a little while. She asked him if he was eating like he wanted to. He replied that he was. She asked him if he'd had any lows lately and he nodded his head. She asked what he did and how did he feel when he was low.
Her last questions was: "Riley is there anything that diabetes keeps you from doing that you want to do?"
His reply: "Nope."
This brought a little smile to my face.
Then, she looked at me and Michael. "His A1C is 7.9." I felt the tears build up behind my eyes. "Which that is in range for his age. It's under 8.0. But, I'd like to see it lower."
"Me too", I said. I had stifled the tears. There was no reason to cry. It wouldn't do any good. Plus, I didn't want Riley to see me cry.
She sat about looking at his sugars over the last two weeks. She saw the lows. But, there were also plenty of highs.
It's not like he was on the lower end all day and then dipped down too low. Usually, he was high and then went low.
Over-correction? Maybe. Diabetes just being it's sucky self? More likely.
We sat in her office over an hour with her pouring over his logs. She asked a million questions.
What does he usually eat? Can we add a little protein here? How often is school calling because of his sugars?
Riley had not gained any weight since his last visit. She looked back and said average weight gain in a year was about 5 pounds and that since last December Riley had gained exactly 5 pounds. She said we couldn't come back at the next appointment without him gaining any weight.
She suggested feeding him a little more food throughout the day. She asked where we thought we could add some carbs. She looked at his log and saw that his carbs were, by far, the lowest at breakfast. "Why don't we up his carbs here? You can give him more cereal."
I gave her a wary eye. I'm not big on low carb eating for my kid. But, over the years I have learned that the only way for Riley to have decent sugars in the morning is for him to eat lower carb at breakfast. By that, I mean he usually eats around 25g carbs at breakfast.
"I guess we can try it." But, I'm sure the way I said it Dr. M knew I was very skeptical.
She poured over his logs again. She saw his mornings numbers and decided that we shouldn't mess with the morning carbs.
I said, "How about this? How about I feed him when he's hungry?"
She smiled. "That sounds good. A lot of times in the most structured families this gets forgotten."
Sometimes Riley will come to me and tell me he's hungry. I often make him wait until it's "time for him to eat". Now, I'm not. If he's hungry, he eats. If it's an hour before dinner, he can have an apple to get him through.
I know it sounds horrible. But, for the sake of the numbers, I would give him some sugar free jello (no sugar, no carbs, no calories), which I'm sure did nothing for his hunger. Or, I'd let him eat a cheese stick. Again, when I'm hungry I don't want no stinkin' cheese stick.
In the midst of the diabetes and the numbers I forgot that he's a growing little boy.
So, after over an hour Dr. M made a few basal suggestions, but not many. She was almost just at stumped as me. Besides, now that he's having these lows, his basals need to be decreased some. And, with an A1C of 7.9 it's hard to decrease anything. It's not that I changed basals right before his appointment either. The last basal change was about 2 weeks ago.
"These lows come at very random times. It's hard to see where to tweak his basals"
"Tell me about it," is all I could say.
Before we left Dr. M told me to see what I could do with his basals and if I got frustrated to call her. She could at least listen and understand my frustrations, she said.
As I stood up to leave Dr. M said something that reminded me why we make a 6 hour trek to her office every three months.
I was pulling on my coat as Riley quietly played with toys in the corner.
Dr. M said, "Mom, turn around and look at your son. He's happy. And, he's healthy. You've done a great job. You have a healthy, happy kid."
It's very frustrating to work so hard, to pour so much time and energy into something and not get the results you were hoping for.
But, as I turned to look at Riley I realized I do have what I was hoping for. I have a happy, healthy kid. A kid who when asked said that diabetes doesn't keep him from doing what he wants.
I've got to learn to stop focusing on the number and start focusing on the big picture.
" Not everything that counts can be counted. Not everything that can be counted counts."
Those words are on a sign in Dr. M's office. I like them and am going to try to focus on remembering that not everything that counts can be counted.
YAYYYYYYYYYYYY!!!! Good job Mom! :)
It sounds like you have a wonderful doc :) If she had told me to turn around and said what she did to me I think I would have busted into tears right then!
LOL...feed that growing boy ;)
Good Job Penny!!! You are doing a TERRIFFIC job with him. When I read your posts, I often think that I hope that when Jada gets older, I can just let her be a kid- like you let Riley. I want to be her to be healthy, but don't want to over obsess with this disease. Thanks for being so real on your blog- it's been such a help to me! Blessings and Congrats!
Penny, this is another one of your great posts. Thank you.
I remember that Michael ate a lot as a child. Of course we never worried because he just burned through it, but he seriously had an incredible appetite and capacity to eat. I remember worrying about how his mom and dad were going to afford to feed him as he got older, even though he was thin as a rail.
That is a great quote. I am so new to this and am quickly recognizing that the numbers don't always make sense. It sounds like you are doing more than enough and giving it your all.
My 2nd daughter has Down syndrome and celiac disease. I remember the 1st time we retested her for celiac antibodies they were still present, and I freaked. Our doctor said, "Nicole are you doing the best you can? I know you are, and I also know that you have to live your life. You could let this become an obsession and control your life, or you can do your best and know that it's good enough."
I have learned that if I am doing ALL I can sometimes I have to ask God to do the rest.
Penny, I love your posts! You always have a way of putting into words all of the things that I am thinking but never think to put into a blog post.
From one D Mom to another I KNOW you are doing a really gret job!
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