Wednesday, March 15, 2006

Year Two

Yesterday was the one-year anniversary of this blog.

It was such a busy day, what with Joseph home for spring break (weird, because you know, it's not even spring yet... and we're expecting a snow storm here tonight... sigh). And Evan has been sick with a fever and a nasty, wet cough since Sunday night.

You get the picture. The day went by, and here I am this afternoon, posting my first entry for Year Two.

Wow.

So, where to begin?

How about if I give you the low-down on Monday's endo appointment?

We arrived for Joseph's visit exactly on time-- an amazing feat given our more typical difficulty just getting out of the house. Despite Evan's reluctance to leave the warm couch, and the warm glow of the television-- PBS Kids beckoning -- we made it out the door in record time.

And, before we could take a seat in the waiting room, a nurse with long gray hair, a broad smile, large clipboard in hand, called out:

"Joseph?"

"Yes."

"Don't sit down."

Immediately, she brought us to the "pre-" examining room. The room where his finger is pricked for the A1c. The room where height, weight, and blood pressure measurements are taken. Where I'm always craning to see the numbers on the scale. Only to be frustrated by those damn kilograms; I can never figure out the conversion.

Too nervous, I guess.

Then, off to the examining room. Where we waited for nearly 45 minutes.

Given last month's visit, you can understand my anxiety as we sat there-- Joseph reading Eragon; Evan insisting that I help her come up with names for the characters in her latest story.

And all the time, my mind racing.

I just couldn't relax. Because, despite knowing that all of those extra tests his endo ordered last time came back negative, I was afraid that again, he might not have grown.

That really, I was screwing up here. Because the only other explanation for a failure to thrive would be poor blood sugar control.

Well, I needn't have worried.

The very first thing Joseph's doctor said when she walked in (smiling, mind you), was:

"Wonderful to see you all again. Joseph's growth is beautiful, just beautiful. He's between the 50th and 75th percentile in weight and about 75th percentile in height. Back on his normal curve. "

Upon hearing these wonderful, wonderful words, a tremendous wave of relief swept over me.

Until, that is, I remembered the A1c.

"Well, it's gone up slightly-- from 7.3 to 7.5. After looking at his logs, I think an increase in his basal rate from 8 am to 10 am should smooth out that spike he seems to experience between 10 and 11 am. That should help bring his A1c down to 7, which is really our target for high school kids. Joseph is actually right where we want him to be for elementary kids."

Hmmm.

"Well," I began, "I'm not sure that changing the basal rate during those hours is such a good idea." Then I pulled out the logs, flipping to the Saturday and Sunday entries.

"If you look here, there's no spike on the weekends-- when Joseph sleeps in. His bg stays steady, in the low 100s, all the way until as late as 11am. If we increase the basal in the morning, he's bound to go low."

The doc agreed.

Instead, we're going to give him more insulin for his breakfast bolus, and actually lower his basal between 10 and noon (to try to prevent the lows he's experienced when we've increased his food boluses in the past). We'll see...

So, it's all pretty good.

But still, I'm exhausted. Thinking about the never-ending bg checks, site changes, endo visits.

The endless worrying.

I'm just in a funk about all of it right now.

Maybe it's because we're seven months into Year Two with diabetes, and I'm surprised by the fact that our ability to integrate this condition so well into our lives makes me both proud and more than a little sad.

Maybe because I'm still fighting this new reality of ours.

Maybe because really, I just can't accept it.

14 comments:

Shannon said...

Aww Sandra. I wish I could give you a big hug. I know it's exhausting for you. But you're doing great! You may not feel it in your mind, but just look at your son and how he's thriving.

Didn't we start our blog around the same time? My anniversary is this month also, although I couldn't tell you what my starting date is.

I remember when you first commented on my blog. I thought "what a relief that there is another parent who can relate to what I'm writing about". You gave me the most comforting comments. And when you said you cried while reading about my account of Brendon's diagnosis, I also understood that things were still so raw for you.

You've come a long way since then. May year two bring some ease of mind for you :)

Anonymous said...

Dear Sandra,

I am a happy lurker of diabetes blogs and find it so enlightening to know other diabetics stories (I AM normal!)

I wanted to thank you for this blog and to give you a virtual hug of appreciation for all of the effort your are putting into Joseph's care and for helping me, retrospectively, better appreciate my parents. I was 10 when I was diagnosed (with a 463 bg!), and they gave me shots, did my bg, and forgave me when I lied about "not" eating the M&Ms in the pantry. They have been my constant advocates and sounding boards since I've been out on my own.

I know that it's exhausting as a parent (much more now than then!), but you are making such an important impact not only on your son's health but on how he views his condition as just that -- something to be dealt with but not something to control him.

Despite doctor's fears that I would not develop properly (I was "petite" for a long time!) I'm 5' 8" and healthy. I've been a diabetic for 17 years and my bloodsugars go up and down like Joseph's, but my A1C is 6.6 and while yes, complications are a threat, they're much less threaten-ing knowing that their are people like my parents and you to lean on if they happen.

Be encouraged,

NCL

Vivian said...

Sandra,
How awesome that his growth is back on track and that his A1C is still really great. You are so on top of it, I know that there is a lot of work behind that statement. You are such an awesome mom and your children are very blessed. It will be a great year two, we are wishing it into the universe. =)

Nicole P said...

Sandra,

I'm sending you the biggest hug I can muster now. I wish I knew just the right thing to say, but I don't.

I know you must be tired, frustrated, angry -- sometimes, I feel all of those things too. I hope you know what an amazing job you're doing -- and that Joseph, with your help, will continue to inspire you - and others - with his strength, and his charm, and his wit, and all of the other wonderful qualities that you so masterfully convey when you write about him and your lives.

Penny said...

Happy blogaversary!!! You are in my thoughts. I've been in a funk about diabetes lately too and really not at all pleasant to be around. But, I know that it will pass like always. It will pass for you too.

I'm glad Joseph is back on track with his weight.

Elizabeth said...

Sandra-
I am so happy to hear that Joseph is back on the right track with his weight and height. Kids his age seem to have the strangest growing patterns. My little brother was like that for a while, too. Although he doesn't have diabetes...

This disease can be so frustrating sometimes, and you just want to break down. And it is hard. But you'll get through. I've seen the perseverance in the time that I've been reading your blog. And Happy 2 year anniversary!

julia said...

Diabetes care is like Chinese water torture. Drip, drip, drip, with no end in sight. It's going to wear you down and make you mad/sad/frustrated/irate and a whole bunch of other stuff. It sucks. And it's ok to have a pity party sometimes. We all need it, and we're all here to give you virtual hugs and support you and each other in this battle.

Andrea said...

First...Congrats on your anniversary :). I am also a faithful follower of this blog and enjoy each and every entry. TY for sharing your experiences with us :)

To me, it seems like the appointment went by without a hitch...that's the way every one should be. It's so wonderful to know that Joseph is doing so well with his growth- i know that must be a relief for you.

I know there's some hesitation in getting too excited over this good news. I think it's not unusual to feel that way... For me, I think it has to do with fear that as soon as I think everything's going to be ok- everything changes and not in a positive way. Let's face it, this disease can be very unpredictable. It can seem easily controlled one day and the next be a whole different story.

However, I think we need to try and not think that way. Celebrate the good work and everything you and Joseph have achieved. He is doing WELL and there's not doubt in my mind that it's b/c he has such a caring and supportive Mom and family behind him, helping him along.

Yes, there will be stumbling points along the way, but I think you have to cross those bumps as you come to them and not obsess about them too much before they happen. Very likely, thoses things we worry about may never even become an issue.

This is something I'm trying to learn myself and, honestly, it's hard for me to be more present in the moment and make the most of each day. But I'm trying. I hope I'm not off base writing this, but i just sensed that you were a little apprehensive about enjoying the good news. Forgive me, if I am.

Congratulations Again and Best wishes ALways :):):)

Tekakwitha said...

Sandra,

As with everyone else that's responded, I'll be thinking about you today. Hang in there.

tek

Jamie said...

Big Hugs coming your way Sandra.

Like everyone else has said, you really are a great Mom and you're doing AWESOME raising your children and managing your sons diabetes.

Celebrate the wonderful visit with the endo you just had. It's great news that he's growing wonderfully and that his a1c was still in a great spot.

Congrats all around - you're doing a fabulous job!

Beanie Baby said...

Happy Blogaversary!

I think March is *the* month for starting blogs. It seems like every blog I visit had a blogaversary this month.

I'm so jealous of Joseph. My parents were nothing like you--right from the beginning it was "you're on your own"--I made my own doctor's appointments, got to them myself, ordered and picked up my own prescriptions, did my own research, managed my own testing and the results, all of it, in a house that was full of junk food all the time. Now mind you, I was 17, but I don't think I would treat Frances that way if she were 17. Anway, Joseph's a lucky kid to have you.

And I sympathize--believe me, very very much--on the growth issues, aka The Bane of My Existence. I'm glad to hear he's doing so well!

Sandra Miller said...

Many thanks for all of the hugs, and kind words.

They mean a lot.

Every so often it seems like my emotional state starts to mimic some of Joseph's rollercoaster blood sugars.

And yesterday was definitely a low (as have been a number of days, recently).

But today is better, thanks to many of the things I read here (and on some of the other d-blogs out there).

Andrea-- you were not off base at all.

And Beanie, I am so sad to read of your parent's lack of involvement after your diagnosis.

You're right, I cannot imagine telling my child (even at 17) that he was on his own with all of this.

I'm paying forward all of this hugging by sending one your way as well :-)

art-sweet said...

I think at first diabetes can be a bit like a new puzzle. It's challenging to put together the pieces. You feel a little thrill of pride when you "get it right" and the medical world smiles on you.

Then reality sets in. You don't always get it right. You worry. You get sick of the puzzle and you can't put it down.

And that's normal. It's a boring, frustrating, stupid puzzle. But, as I think I've said before, sticking at it is worth it for the life that you - and Joseph - will live despite it.

Here's to many more years of healthy blogging for you and your family.

Caro said...

Sandra,

I know I'm a couple of days late, but congratulations on reaching your first blog anniversary.

Last week you left a comment on my blog, in response to my epilepsy post, saying how inspiring you found it. Now is my turn to tell you how inspiring I find you. I really admire the way you are taking care of Joseph and his diabetes; Paying the necessary close attention, but letting him be a kid first and foremost. All of you have handled it with strength, and if the evidence here is anything to go by, you are doing a great job.

Reading your beautifully written posts gives me a glimpse inside what it was like for my parents, trying to bring me up as a normal kid who happened to have diabetes. For that I also thank you.

Diabetes sadly doesn't really ever get any easier, but it does gradually become just a part of life, albeit one we'd all change in a heartbeat.

Hang in there, and have a virtual hug, from across the ocean.