One More Try

I'm going to give one more push to donate to my charity badge located on the side of my blog. The badge will not be any good after March 31st. I know many of you give to your own charity. But, this is for those of you who don't or maybe who do, but would like to help this one too.

The Iacocca Foundation gives all of its money to research to find a cure. Their money does not go to any other avenue. That's one of the main reasons I choose to support The Iacocca Foundation. I want a cure. While better medicines and new technology is great, I look forward to a day when Riley doesn't need any of it. And, I want to do everything in my power to make that day come to fruition.

Now, some statistics: ( I know I may be "preaching to the choir" here, but maybe someone is reading that doesn't know that much about D. All these statistics were collected from various resources throughout the web.)

Type 1 diabetes is the most common chronic disease of childhood. It is more common than cancer, cystic fibrosis, MS, rheumatoid arthritis, and muscular dystrophy.

1 in every 600 children will develop Type 1 diabetes.

As many as 3 million Americans may have Type 1 diabetes. 171 million people have diabetes world-wide.

In the US 13,000 children are diagnosed with Type 1 diabetes each year. That's 35 children every single day.

Diabetes reduces life expectancy on average by up to 15 years.

(That last one is the one that really hits me in the gut.)

Also, that cute little boy you see on the badge. That's my baby. I love him more than I do life itself. But, this isn't just about him. It's not just about your child. It's not just about you. It's about everybody WORLD-WIDE that deals with this disease on a daily basis.

I am going to leave you with a video. I've seen it on some other blogs. If you haven't seen it, take some time and watch it.

Here are some more faces of diabetes:

A Fear of Purple Elephants

At Riley’s endo appointment in September the subject of school came up.

As Dr. M was talking she could see me squirming in my seat. “I don’t want to think about him starting school right now.”

She smiled. “Does Riley ever stay with someone who is not a relative?”

“Um, no. The only people who know how to care for his diabetes are my husband and I and my mom. I’m not leaving him with anyone else.”

She smiled some more. “Well, maybe you should think about leaving him with someone just to go to the grocery store or something. Just a quick little trip.”

This was during the time that Riley was playing soccer. “Or, you can leave him at soccer practice and run to the grocery store.”

Was she crazy? Leave him alone at soccer practice? What if he went low? What if he needed me? What if…

Then she went on to say that I needed to let go a little at the time. It would make it easier on me when it was time to send him off to school, which makes perfect sense.

“This woman knows what she’s talking about.”, I thought. “I really need to listen to her and do what she says.”

Michael and I talked about it on the way home. I admitted I needed to give up some of the control. We talked about situations I would be comfortable with.

Then, I proceeded to do exactly what I’ve been doing all along. And, that was six months ago.

Why is it so hard for me to let someone else have the reigns for a while?

Riley has been staying with my mom when I’m working. He’s been doing this for 17 months. I have just gotten to the point in the last couple of months where I stopped calling my mom several times a day to check on Riley’s sugars. I have even gotten to the point where I don’t automatically look at his sugars as soon as I walk in the door.

This is a big step for me. The next big step is coming up in 5 months. And, I don’t know what I’m going to do about it.

I know I need to ease into it like Dr. M said. But, I just have so many fears. I’m terrified of the what-ifs.

What if…he goes low and has a seizure? No, he’s never had a seizure before, but what if he does and I’m not there?

What if…he goes low and no one notices until he passes out?

What if… he goes high and starts to spill ketones?

What if…his set comes out and I’m not right there to change it?

What if…they don’t count his carbs right?

What if… a purple elephant lands on the moon and sprinkles sugar in the air?

Yes, I do know how silly I sound.

I have never been a person to live by the what-ifs in life. Ever. So, what has changed? What has this stupid disease done to me?

A lot of it has to do with control. I am not a control freak. Really, I’m not. You only need to look at my house and see the chaos to know that being in control of everything is not an issue for me.

With diabetes no one is ever really in control. You can do everything just right (eat, count carbs, bolus) and still come out with crappy numbers. I think me handling every aspect of Riley’s D helps me to somehow feel more in control of things.

Silly, really, trying to feel in control of something you know you can’t control anyway.

But, the big issue, and this in the one I struggle with the most, is fear. Fear that something bad will happen to Riley. Fear that if I had been there, whatever it was would not have happened.

Holden got his driver’s license (and a car) a little over a month ago. A few weeks before, I started panicking. I didn’t know how I was going to handle it. I just knew I would worry that something bad was going to happen every time he was out on the road.

But, you know what? That’s not the case at all. The day he got his license, I stood there with my video camera and watched him drive away for the first time. I waited for the panic to rise in my chest, but it never came. I said a little prayer and went on with my day.

Do I worry that he might get in a wreck? Yes. But, I don’t dwell on it. I just tell myself that if it happens I will deal with it then. There is no reason to waste my time worrying about things that hopefully will never happen. And, even if it does happen, all the worrying in the world won’t change it.

Why oh why can’t I get to that point about Riley’s diabetes?

I’m hoping that when he starts school and I don’t have a choice but to let him go, I’ll do OK. But, right now, I have a choice, and that choice is to keep him as close to me as possible.

Damn Diabetes

My anniversary was yesterday. ( I love you, Michael.) To celebrate, we went out to eat on Friday night and then rented a couple of movies to watch at home (since there was nothing playing at the theater worth spending our money on).

Riley and Holden stayed at my mom’s. Riley has spent the night there a few times since he was diagnosed. His sugars have been running pretty good throughout the night, so I felt good about him staying. My mom gets up and checks his sugar throughout the night like I do. But, I just feel better when his sugars cooperate and she doesn’t have to do anything with them.

I changed his set on Friday morning. Everything seemed to be going OK. I got off of work a little early to go home and change. On the way home, I got a call from my mom. Riley was getting ready to eat a snack and she had checked his sugar and it was 362. She was hoping to catch me before I went to eat (an hour away). I could hear the panic in her voice. She was trying to play it cool, but I knew she was worried that it was a set problem and I was not going to be close by to change it.

I went home and changed and called as we were leaving (45 minutes later). His sugar was now 243. OK, it was coming down some. I called again at suppertime and he was 200. Not great, but not in the 300s either.

I finally felt better and put diabetes out of my mind for the night. I knew my mom could handle it. She keeps him every day of the week.

We got home and popped one of the movies, Saw III, into the DVD player. Yes, I know, we’re just hopeless romantics aren’t we? I love horror movies. But, let me tell you, this one was pretty intense. There were several scenes where I couldn’t bare to watch and I had to turn my head away from the TV or bury my face in Michael’s chest.

The movie ended around midnight. We decided not to watch the other movie (The Departed: We watched it later. It was not nearly as good as I thought it would be and it had way, way, way too much cursing in it for me. If Leo and Nicholson hadn’t been in it, I don’t know if I would have even finished watching it.)

We were in the processes of getting ready to go to bed when the phone rang. As soon as it started ringing I knew that something was wrong.

It was Holden. He was calling to tell me that Riley’s sugar was 322. My mom wanted to know if she should give the full dose of insulin the pump recommended or cut it back a little since it was midnight.

I told Holden how much insulin to give and to recheck in an hour and a half and call me back. I hung up.

I sat on the couch with my head hung down. And, then, I started to cry.

Michael walked over and asked me why I was crying. “You wouldn’t be crying if his sugar was like that and he was here.”

“But, he’s not here. He’s there. He’s there and I’m not.”

My crying turned into sobs.

It was a mixture of a lot of things, I guess. First, guilt, because I wasn’t there with him (even though he was asleep). He’s my responsibility.

Secondly, some of it was a little selfish. I mean, I can’t even get away from it all even when he’s not with me. This was supposed to be our anniversary celebration and I was sitting on the couch blubbering like and idiot, all because of diabetes, once again.

Also, I just signed him up for school next year. This is not settling well with me. He will be attending a private school. They do not have a school nurse. His teacher will be the one caring for him. Also, the school is Pre-k through 12th grade, so Holden will be there to look after him too.

But, it’s still hard for me to think about him being there all day without either my mom or me. He has not stayed with anyone other than Michael, my mom, or me since he was diagnosed. Well, he did stay home with Holden for about an hour and a half the other night. Michael and I were at a meeting about 2 minutes away and I had my cell phone the whole time.

I kept crying and crying and crying. (I’m wondering if any of it was due to carry over from the movie also, not Saw, but Steel Magnolias)

Michael, bless him, didn’t know what to do. He held me, but there wasn’t really anything he could say to make it better.

He would say, “Maybe his basals need adjusting. Or, maybe it’s his needle.”

To which I would reply: “It doesn’t really matter, does it? I can fix his needle, I can adjust his basals, but I can’t fix him. No matter how hard I try, no matter what I do, he still has diabetes. I can’t fix that. And it kills me. It just kills me.”

So, I cried for about 30 minutes and then we went and lay in the bed. But, I couldn’t sleep. I knew my mom was supposed to call in another hour to report his sugar. Until then, I couldn’t sleep.

Michael and I lay there and talked about Riley and his future and my fears of him going to school, no more crying, just talking this time.

Then, at 1:20 the phone rang. His sugar was down to 264. Well, at least it was coming down.

I finally let myself drift off to sleep.

Riley ran high all night and awoke with a sugar of 256. Mom didn’t call until around 10:30 when he wanted snack and he was 299. (Why didn’t I call earlier? Because I was still in bed asleep. 17 months of getting up every 2-3 hours has taken its toll.)

Michael and I got up and I went and changed Riley’s needle. I didn’t know what else to do.

I didn’t correct the 299 because of the drop he usually gets with a set change. Sure enough, an hour and a half later, he was 70. I gave him a few fruit snacks and checked again in 20 minutes. He was now 49. Yep, it must have been the set causing the highs.

If he had been with me, I would have changed the needle earlier. He wouldn’t have ran high as long.

Guilt, pain, grief, anger all rolled into one. That’s part of being a parent of a child with diabetes.

My head knows Riley’s going to be OK. I know Riley can be and do anything he wants. But, my heart just want get on board with my brain.

And, I don’t know how to make it.

Because sometimes you just need a good cry

A couple of nights ago I was sitting on the couch flipping through the TV channels. As usual, nothing was on worth watching.

But, then, I saw it, a movie I used to love, that was until Riley got diabetes. I own the movie, but have not been able to bring myself to watch it over the past 17 months. It just hits too close to home.

But, I turned it there anyway. I didn’t really plan on watching it. I was almost compelled to turn it there.

I missed the beginning. When I turned it on, Shelby was sitting in the kitchen and telling her mom that she was pregnant. Her mom was none too pleased with this information.

At this point, I started telling myself, “OK, turn it NOW. You've seen it a hundred times. You know what happens. You really don’t need to watch it. Turn it.”

About that time, Shelby followed her mom into the other room and said:

“Mama, plenty of diabetics have babies and they do just fine.”

“But not you Shelby, you’re special.”

And that, my friends, is when I lost it. I started to cry. And, I pretty much cried through the whole rest of the movie.

I would get OK and then something would happen and I’d start up again.

Occasionally, Michael would walk through the living room and say, “You shouldn’t be watching this.” I would just peer at him from beneath the Kleenex I was holding up to my eyes.

I cried softly most of the time. But, when Jackson found Shelby lying in the floor, I started to sob.

And, when she died, I sobbed some more.

And, when her mom lost it at the funeral, I sobbed even harder.

I sat on my couch and cried all I wanted. I sat there and grieved for my son like I haven’t done in a long, long time.

It was just something that I needed to do.

After the movie was over, I got up, dried my tears, checked Riley’s sugar, read him a bedtime story, and tucked him into bed.

All the while, my now favorite quote from the movie was running through my head. Something that Shelby says to her mom when she tells her she's pregnant:

“ I’d rather have thirty minutes of wonderful than a lifetime of nothing special.”

And, I felt blessed because I think it’s the other way around for me. I’ve had a lifetime of wonderful and maybe thirty minutes of nothing special.

That's what I wish for Riley too. And now, I'm at the point where I can see it happening. A year ago, I couldn't say that. But, now, I'm sure that's what's in store for my boy: a lifetime of wonderful.

Another music meme

I got this meme from Nicole who got it from Julia. It looked like a lot of fun, so I thought I'd give it a try. But, turns out, Nicole and I turned 18 in the same year (who knew?) So, I did mine a little differently.

The rules are to go to popculturemadness and click on the decade you turned 18. Then, click on the year you actually turned 18. Paste the songs into your blog. Then, edit them: the ones you liked put in bold type, the ones you didn't like mark through, the ones you were neutral about put in italics, and the ones you don't know leave unedited. (but, I'm putting a question mark beside them like Nicole did)

I clicked on the PopMusic button and clicked on the hits for the year I turned 18 and got a longer list of songs, so that's what I am using. They are listed as the greatest hits of that year.

And, I must preface this by saying: Don't laugh at the songs I liked. Cut me some slack. I was only 18. Also, I haven't looked at the list yet. I probably won't know that many songs and the ones I do know I probably won't like. I was a Led Zeppelin/Jimi Hendrix/Aerosmith/Grateful Dead kind of girl in high school.

Unforgettable - Nat and Natalie Cole
Summertime - DJ Jazzy Jeff and Fresh Prince
(Everything I Do) I Do It For You - Bryan Adams
Gonna Make You Sweat - C + C Music Factory
More Than Words - Extreme
O.P.P. - Naughty By Nature
True Companion - Marc Cohn (??)
Good Vibrations - Marky Mark & The Funky Bunch
Strike It Up - Black Box (??)
Power of Love/Love Power - Luthor Vandross
It's So Hard To Say Goodbye To Yesterday - Boys II Men
Enter Sandman - Metallica
Motownphilly - Boys II Men
Crazy - Seal
God Bless The USA - Lee Greenwood
Unbelievable - EMF
Gypsy Woman (She's Homeless) - Crystal Waters (??)
Lets Talk About Sex - Salt N Pepa
Black or White- Michael Jackson
It Ain't Over Till It's Over - Lenny Kravitz
When A Man Loves A Woman - Michael Bolton
Here We Go - C+C Music Factory (??)
P.A.S.S.I.O.N. - Rythm Syndicate (??)
Star Spangled Banner - Whitney Houston
Coming Out Of The Dark - Gloria Estefan
Wind Of Change - Scorpions (??)
Things That Make You Go Hmmmm... - C+C Music Factory
Emotions - Mariah Carey (??)
I've Been Thinking About You - Londonbeat
She Talks To Angels - Black Crowes
Baby Baby - Amy Grant (??)
Can't Stop This Thing We Started - Bryan Adams (??)
Someday - Mariah Carey (??)
I'll Be There - Escape Club (??)
Something To Talk About - Bonnie Raitt
Joyride - Roxette (??)
Deeper Shade of Soul - Urban Dance Squad (??)
Love Is A Wonderful Thing - Michael Bolton
Silent Lucidity - Queensryche (??)
Set The Night To Music - Roberta Flack and Maxi Preist
Gett Off - Prince & The New Power Generation (??)
Sadness, Part 1 - Enigma (??)
Right Here, Right Now - Jesus Jones
Around The Way Girl - LL Cool J (??)
I Touch Myself - Divinyls
Walking In Memphis - Marc Cohn
Love Will Never Do (Without You) - Janet Jackson (??)
Rico Suave - Gerardo
High Enough - Damn Yankees
Justify My Love - Madonna
I Don't Wanna Cry - Mariah Carey (??)
Blowing Kisses In The Wind - Paula Abdul (??)
Every Heartbeat - Amy Grant
Everybody Plays The Fool - Aaron Neville
I Wanna Sex You Up - Color Me Badd
The Motown Song - Rod Stewart (??)
Miracle - Whitney Houston (??)
Touch Me (All Night Long) - Cathy Dennis (??)
(If There Was) Any Other Way - Celine Dion (??)
Losing My Religion - R.E.M.
Now That We Found Love - Heavy D and The Boys
Where Does My Heart Beat Now - Celine Dion
Round and Round - Tevin Campbell (??)
How To Dance - Bingoboys with Princessa (??)
Kiss Them For Me - Siouxsie & The Banshees (??)
Learning To Fly - Tom Petty and the Heartbreakers
You Could Be Mine - Guns N' Roses (??)
Don't Treat Me So Bad - Firehouse
Let The Beat Hit 'Em - Lisa Lisa and Cult Jam (??)
Wicked Game - Chris Isaak
Love... Thy Will Be Done - Martika (??)
Do The Bartman - The Simpsons
Shiny Happy People - R.E.M.
Into The Great Wide Open - Tom Petty & The Heartbreakers

After reading that list, I know why I listened to classic rock when I was in high school. Do The Bartman and Rico Suave? Music was really bad when I was a senior in high school. Really, really bad.

Has it really been a whole year?

One year ago today we began on our pumping journey. It really doesn't seem like it's been that long, and then, in a way, it seems like we've been doing this forever.

We did our training at Wake Med in Raleigh. I remember that day. I was so nervous. I just knew that anytime Riley moved he would pull out his set. He's one of the most active 4 year olds I've ever seen. People actually comment all the time on how "busy" he is. And, in the last year, I think his set may have pulled out twice.

I remember putting his set in. It took me forever to rewind the pump and prime and all that stuff. The pump kept timing out and going back to the main screen before I could get to the next step. Now, from start to finish, it takes maybe 10 minutes, if that long.

I changed his set just this morning and barely even thought about the steps. It's just second nature now.

I really can't say enough nice things about the pump. I absolutely love it. I can't imagine what our lives would be like without it. I know there is no way we would have an A1C of 7.2 on injections. I know plenty of people do, but there's no way we could do it with Riley.

He gets such tiny doses of insulin. When he was on injections, he would often just run high because he couldn't get a small enough dose by syringe to bring him down. Early on, it was not unusual for him to get .15 unit for a correction, impossible with a syringe. So, when he needed just a little correction, he just ran high instead.

As much as I love the pump it's more work. Especially if you really want to fine tune everything. I mean you can change your insulin dosage from one hour to the next.

I've had my moments when I just wanted to throw the darn thing out the window. Especially early on. (To read about the first month of pumping go to my March 2006 archives. But, beware, it's not pretty.)

When I look at the picture at the top, I can't help but feel a twinge of sadness. While I'm so glad the technology is there and that Riley is able to benefit from it, it's also a little painful to see him attached to a machine.

But, it doesn't seem to bother him at all.

I'll leave you with a couple of pictures I took before I got the one you see at the top. Riley wouldn't be serious.

Pump or not, my kid is still a goofball.

I Can't Get Enough of This Guy

Yes, I know everyone else isn't as in to him as I am, but take a look. I think he has some great things to say about living with diabetes.

Things that make you go hmmmm......

My mom called yesterday to let me know Riley's sugar was high.

She knew I would tell her to recheck it, so she already had. I always recheck when the result is in the 300s and there's no real explanation. For example, he had pasta or he's been running high all day.

But, the last few days his sugars have been great and the 343 that registered just didn't make sense. So, she checked it again and got 302. Yes, different, but still high.

He had a chicken sandwich and apple sauce for lunch (a very common meal for him) So, it was one of those "What the heck?" moments.

I told my mom to bolus for the 302 and to recheck in one hour. Whenever I bolus for a abnormally high sugar, I recheck in an hour to make sure it's coming down. That way I know it's probably not his set causing the high.

My mom called me an hour later. Riley's sugar was 50. Yes, 50 and he still had an awful lot of insulin on board.

He got fruit snacks and some (uncovered) cookies. Somehow he miraculously never rebounded.

So, my question is this: What in the heck happened? It's just so frustrating.

His sugar was checked twice, fingers wiped both times, using different fingers on a different hand. So, the high reading should have been correct. And, the low reading was correct.

He hadn't been any more active than usual. So how in the world did he drop 252 points in one freaking hour? Don't have an answer? Me either.

Just another example of why you can never just get comfortable with this disease.

Brought to you by the number 35

Friday night I packed. Clothes, check. Toiletries, check. Insulin, check. Infusion sets, check. Extra strips, check.

Saturday morning we headed off to the great city of Charlotte.

Before checking into the hotel, we stopped to eat. While at the restaurant, Riley proclaimed that his sugar felt low and then he began to slide down in his seat almost to the floor.

His sugar was 61 . He got fruit snacks and then lay in the booth with his head in my lap and his feet in Michael’s until he felt better.

This was one of the doosies though. His sugar did eventually come up. But, it was one of those where he felt so bad he was whiny and begging for more fruit snacks.

But, other than that little episode (and the resulting spike of 310: rebound or miscounted carbs for the mini pizza he ate, who knows?), things on the diabetes front did just fine on our little trip.

Then, it was off to the hotel where I took a much-needed nap while Riley and Holden had pillow fights and Michael watched ESPN.

Then, it was time to leave. I was so excited my stomach felt like it had butterflies fluttering around in it.

We walked out of the front door of the hotel lobby, turned left, and then left again. And, there it was: Charlotte’s Bobcat Arena.

Now, I was really getting excited. Was he already inside? What was he doing? Would he play much? Would I be able to see him check his sugar?

We got there plenty early and sat down in our seats. We took the time to pose for some photos.

I took in the layout of the place.

Then, it was time. The lights dimmed and the music started and…there he was!! It was Adam Morrison!!!

I was clapping and screaming (and so was Riley).

We had a great time. Morrison didn’t start, but he got in the game fairly early and played most of the game. He ended up scoring 13 points.

We had great seats (8 rows up from the court), but it was behind the visitors bench. I couldn’t really see him when he was on the bench, so I never saw him check his sugar. (but I’m sure he did.)

The Bobcats played the Toronto Raptors and were only losing by 1 at half time, but Okafor and Wallace were both hurt in the second half and the Raptors ended up winning by 16 points.

But, I don’t care. I got to see Adam Morrison. I got to see someone who got diabetes and said, “So what? I can still do what I want.” And then proceeded to do just that. He was diagnosed with diabetes in the 8th grade, but never gave up his dream of being in the NBA.

Most people just saw an NBA basketball star run out on the court. But, not me. I saw hope. Hope for Riley and his future. Hope that Riley really can one day do whatever he wants.

I screwed up

I screwed up.

I’m not surprised. It’s not the first time I’ve screwed up, and unfortunately, it won’t be the last.

But, I screwed up when it comes to Riley's diabetes and it is tearing at my heart this morning.

I know it’s not really that big of a deal. I’m trying not to dwell on it. The whole reason I’m writing this post is to get it out and hopefully move on. It really amazes me how writing about an experience helps me to move on and not dwell on it.

Last night at supper Riley’s sugar was 116. Excellent.

He had some meat, spaghetti Os, french fries, and some ketchup. I counted his carbs twice and bolused for 25 grams.

At 9:30 last night, he wanted a snack. I checked his sugar. It was 351.

I looked at Michael, “Hmm, I wonder how that happened.”

I checked his needle, checked his tube for bubbles, and found everything to be in working order. I just chalked it up as "one of those things".

I bolused. He went down. He had a snack. He went to bed. He went low (69) twice during the night.

This morning at my mom’s I was logging his sugars and what he ate last night.

I started writing down, “french fries, ketchup, spaghetti o’s” . Then I started thinking. “Wasn’t there something else?”

Then it hit me. He had a roll. He ate a roll and got no coverage for it, 15g of no coverage.

Well, that explains the 351.

His average sugar yesterday was 164. Not bad for a four year old. But, I averaged his sugar without the 351 and it was 145. I like that better.

So, now, I’m beating myself up for miscounting his carbs. I know things like this happen. I know it won’t be the last time I do it. And I know in the grand scheme of life it didn't make that much of a difference.

But, I’m supposed to protect him. And, I’m the one who ran his sugar up last night. It was me. Not his insulin or a kink in his cannula or some weird unexplained cosmic thing. Me, me, me.

It just scares me. Number one, that I could just forget to bolus for something. Number two, it scares me what not bolusing for one roll did to his sugar.

Seeing what the miscount in carbs did made it more real to me somehow. It’s strange. I can’t really explain it.

It just sort of reinforced to me how dangerous this disease really is. And, how important it is to stay on top of it 24/7.

Maybe I needed to be reminded of that.

Parenting a child with diabetes

I’ve been thinking a lot lately about the parents out there who have just learned that their child has diabetes.

What would I say if a mother approached me and said, “My child was just diagnosed with diabetes yesterday.”?

Is there really anything that can be said? There are really no words of comfort to give. There is nothing to say to make it better. But, I’d try.

If nothing else, I’d be there to hold their hands and answer their questions. Even though, unfortunately, a lot of the questions they might ask really have no answers.

I know I’d try to convey to them that things will get better, but they probably wouldn’t believe me.

I remember when Riley was first diagnosed, I kept hearing, “It will get easier.”

And, I kept thinking, “No it won’t. It might have gotten easier for you, but it won’t for me. My son has a chronic disease and that is not going to change.”

But, somehow, even though the chronic disease part isn’t going anywhere, things did get easier, at least a little.

I think maybe the worst part for most parents is worrying that they’re not doing everything right. (which is impossible by the way)

I mean, we spent one night in the hospital and then I’m supposed to come home and be a pancreas for my 3-year-old son. I was armed with the knowledge of drawing up and injecting insulin and a vague understanding of counting carbs, but that was pretty much it. And, there is so much more to it than that.

The hard part is realizing that you’ve got to learn as you go. Of course your endo is there to guide you a bit. But, they can only do so much.

If there’s one thing I’ve learned, it’s that taking care of diabetes is a lot of guesswork. Now, once you get the hang of it, it’s an educated guess, but it’s still a guess nonetheless.

You’ve got to get to where you’re OK with that. There is no x + y = good blood sugar.

That was really hard for me. I thought you give him the insulin to cover the carbs and his sugar will always be in range.

I quickly learned that his sugar is often not in range no matter how hard I try.

When Riley was first diagnosed, I would sit for hours and look at his log book trying to figure out what I did wrong, why his sugar went up to 350 and then down to 57.

I’ve learned that usually it’s not anything I did wrong or anything that Riley did, it just is what it is. That’s a hard pill to swallow.

As parents we are supposed to protect our kids. We are supposed to fix things and with disease there’s no “fixing it”. Try as hard as I might I can’t fix it. I can’t make all of his sugars be in range.

Now, does that mean I should just give up? Heck no. It just means I have to be resilient. No matter how I tired I am of trying and not getting the results I want, I have to keep trying. I don't have a choice.

So, for any parents out there who might be reading and your child is newly diagnosed I wanted to leave you a few tidbits that have helped me.

#1) Keep good records. Even if you’re tired at the end of the day, log those sugars. They are your key to recognizing patterns. And recognizing patterns lets you know where you might need to make adjustments in insulin. And, by pattern, I mean at least 3 days worth of similar sugars at similar times.

#2) Don’t obsess over a few high sugars. (Yeah, I know, it seems impossible.) I used to freak out ANYTIME Riley’s sugar got high. I’ve kept all of his records and one time I went back and looked at his sugars from his first few days home. There were a few high ones, but they were way better sugars than what I would see down the road. But, I remember panicking a lot back then if his sugar went over 250. Now, at the end of the day, I go through and average his sugars. It’s really helped a lot to put it all into perspective. All of the sugars are not going to be OK, but I know at the end of the day if his average blood sugar is OK, then we’re on the right track. This is also another good way to notice patterns. If he has a few high days in a row, I know some adjustments might be needed. ( This only takes a few minutes. I usually do it while I'm watching TV.)

#3) Don’t forget to let your kid be a kid. (That probably should have been #1 on the list) I try very hard to let Riley be like everyone else as much as I can. I let him have cake and ice cream at birthday parties. He has a cookie or two for dessert every night. He got a sucker after getting his hair cut yesterday. When he was first diagnosed I would freak out about birthday parties. I would go in the bathroom and cry when he ate his cake. But, I’ve since figured out how to dose for birthday cake and for ice cream. The only way to learn how to deal with things, like cake and ice cream, is to let them have it and learn what it does to their sugars and then figure out how to fix it. There is not really much that your child can't do. Really.

#4) Test their sugar and test it often (kind of quoting Wilfred Brimley there) Don’t ever let someone tell you you’re testing your child’s sugar too much. You are the parent; you’re paying for the strips, test as much as you need to. I tested more than Riley really needed to be tested in the beginning. It was more for me than for him. It helped calm my fears. But, since then the testing has decreased. But, I still test anywhere from 9-12 times a day (on average). If he has a string of lows I test more, of course. You will know how often you need to be testing. And, to go along with that, don't let anyone tell you you're getting up to test too much at night. Again, you do what you've got to do.

#5) Never stop being an advocate for your child. (That kind of goes with what I said in #4. Don’t let their endo brush you off when you feel like you need to talk to them. (If they keep doing this, find a new endo. Riley's endo lives 3 hours away. But, I trully believe she's the best there is and it's well worth the drive.)Don’t let others make comments about your child having "bad diabetes” without correcting them (nicely, of course). We are their voice. We’re all they have until they can do it on their own. Educate, educate, educate. That is the key to getting people to help find a cure.

OK, I didn’t mean to ramble. Nor did I mean to sound like the authority on parenting a child with D. I am far, far from it. Most days I feel like I'm flying by the seat of my pants myself.

I'm just sharing a little bit of the knowledge I've picked up. I'd love to hear some of yours.

FULL REWIND REQUIRED

Riley had been running high for a while. He would come down a little with insulin, but not as much as I thought he should. He woke up with a sugar of 222 this morning. That’s pretty unheard of for him. But, he had lasagna for supper last night, so I chalked it up to that.

I arrived in the office at 12:30 and picked up the phone to call my mom. Her first words were, “He’s still high.” I told her I’d be there soon to change his site. I’d rather be safe than sorry.

I got to my mom’s, sat down on the couch, and called over Riley. I pulled out his old set. I couldn’t find anything wrong with it. It looked fine to me.

I filled the cartridge with insulin and tapped out all the bubbles. Then, I went to prime/rewind on his pump menu and hit “OK”.

I scrolled up to “rewind”. It flashed across the screen “FULL REWIND REQUIRED”. Every so often, his pump requires that it rewind the whole way. His pump will hold 200 units. Riley only uses 9.5-10 units a day, so there’s no need to fill it all the way. I usually only rewind to about 75. It doesn’t take as long that way.

As I sat there listening to the whir of his pump and watching the arrows flash on the screen, I thought, “Hmm, why didn't God give us a rewind button?"

What if I could rewind back to before Riley had D, back to when life was simple?

I really don’t remember what life was like before Riley got diabetes. I don’t remember not thinking about what he ate or when he ate, or even if he ate. I don’t remember not getting up two or three times a night to check on him. I don’t remember going to work and not calling my mom all day to check on him.

It’s a defense mechanism I guess. It helps to take some of the sting out of it.

The whirring stopped and I heard a beep and my attention was again returned to the pump. I primed it and swabbed the area with IV Prep.

I cocked the inset and held it up against Riley’s skin. He flinched as the spring released and delved the needle into his flesh. I held it there a few seconds and pressed down a little. Then I pulled back on the device. And, out came the needle and the canula with it. “Darn it!!!”, I shouted. It didn’t stick.

I got a tissue and held it to where the blood was trickling out. It seemed to take forever to stop bleeding.

Then, I went through the routine again with a new set. Placed it against the skin, deep breath, released the spring, and, this time it stuck.

I bolused for his lunch he had just eaten and cleaned up what was left from the site change. Then, I leaned over and gave Riley a kiss on the cheek and explained that I had to go back to work.

He looked at me and said, “Now I’m going to go low.”

“What did you say?”

“I’m going to go low.”

“Why do you say that?”

“Because sometimes when you change my needle, I go too low.”

He’s right. It’s just something that happens. A 60% decrease in his basal for 3 ½ hours and a decrease in his meal bolus usually does the trick. But, he still usually has at least one time during that day that he has to have fruit snacks to keep him from going too low.

As smart as he is and as proud as I am that he knows this, I turn away as the tears well up in my eyes.

“It’s just so unfair!”, I think to myself. “He shouldn’t know that! He shouldn’t have to worry about things like that!”

But, he does.

And, now, I know why God doesn't give us rewind buttons.

I don't know how Riley got this disease or why. If I were to go back in time, it wouldn't prevent him from getting it, it would just delay it.

To fully get rid of this disease a full rewind would be required.

And, I'd rather have the Riley with the carbs and the pump and the midnight needle sticks than to have no Riley at all.

A part of me

I have been inspired by Kerri and Nicole, whose significant others are so sweet they’ll give you a cavity, to write a post about my sweetie.

I know I don’t tell him nearly enough how much he means to me. I take so many things for granted.

Like, the fact that if I happen to groan when I roll over in bed, he always asks me if I need anything. And, if I do need (or want) anything, he’ll get up and get it, whether it’s when we first go to bed or at 3 o’clock in the morning.

Or, the other night, I accidentally got his pillow by mistake. As I lay my head down on it, I commented on how nice and soft it is. He immediately responded with, “You can use it if you want to.” He said this knowing that my pillow is as flat as a pancake and he probably wouldn’t sleep a wink if he used it, because he loves fluffy pillows. But, he would have given it up to make me happy.

Or, the poems he’s written me over the years. Or, the flowers he brought home a couple of nights ago, just because. Or, the wonderful father he is to both the boys. Or, the way he looks at me sometimes like he did when we first met. Or, how whenever someone asks him to go out after work, he tells them he’d rather go spend time with his family. Or the way he makes me feel like I’m the most attractive person in the world even though I still have my pajamas on and my hair is sticking up all over the place.

He makes me feel safe. He makes me feel needed. He makes me feel wanted.

He helps make me, me.

I love you, Michael Alexander, like a whole lot.

Fun with music

A little while ago a lot of you posted this meme. I wasn't in a very fun mood at the time, so I skipped it.

I decided to do it today, just for fun.

The rules are: put your Ipod, MP3 player, or computer music program on shuffle and answer the questions with whatever song pops up.

What does next year have in store for me? Lips of an Angel--Hinder (huh?)

What's my love life like? 18 and Life--Skid Row ("Your crime is time and it's 18 and life to go" Well, I was hoping to be with Michael for the rest of my life.)

What do I say when life gets hard? Drain You--Nirvana (Yes, it is very draining sometimes.)

What do I think of on waking up? Kiss--Prince (Funny, Michael usually wakes me up with a kiss every morning.)

What song will I dance to at my wedding? Mama Kin--Aerosmith

What do I want as a career? Money Maker--Ludacris (Now we're talking!)

Favorite place? Zero--The Smashing Pumpkins

What do I think of my parents? At Last--Etta James (That would have worked out better if I could switch that with my wedding song answer.)

What's my porn star name? Straight To Hell--Drivin' N' Cryin' (Is that a sign or what?)

Where would I go on a first date? Wishing Well--Terence Trent D'Arby (And, I know just what I'd wish for.)

Drug of choice? Swim--Bush

Describe myself. Testosterone--Bush (Well, I didn't really think I was all that manly looking.)

What is the thing I like doing most? What I Got--Sublime (The perfect answer!!)

What is my state of mind like at the moment? Billie Jean--Michael Jackson

How will I die? Waiting on the World to Change--John Mayer ( I hope not.)

Well, that was fun. Feel free to play along if you'd like.

One more thing

One more thing about the badge in my sidebar. You can also put it on your blog or web page or wherever you'd like. Just go to the sidebar and click on "Get this badge".

Thanks!

Six degrees of seperation

I got an email about this, but I didn't really pay much attention to it until today.

The email was explaining a way to have people donate to the charity of your choice. (This was started by Kevin Bacon, thus the name.) So, I got to thinking, why not give it a shot? Even if I don't get any donations, I won't be any worse off than I am now.

The charity I chose is The Iacocca Foundation. If you would like to donate, please click the link on the blog.

The people that raise the most money will get $10,000 donated to their charity. $10,000 to go to research to find a cure for diabetes, wow that would be great.

If you would like to fund your own charity you can do so by going to Network for Good.

Test strip update

Since I last posted, I have gotten the strip problem straight, for now.

Not long after I wrote my last post, I found a medical equipment company to get the strips from. The man there was very knowledgeable and very helpful.

I went and picked up 250 Freestyle strips this afternoon. From now on they will be mailing me 350 strips every month.

And, I no longer have to pay up front. They called my insurance company and found out I'd met my deductible. (Yeah, like the very first day that the plan started.) And, they are just going to send me a bill for my 10%. That means I got 250 strips today for $20.00. Woo hoo!!!

But, you know what the best thing is that happened today? I found out what a great community the OC is. I had a couple of people to email me and offer to send some strips to get me through. I can't tell you how much that means to me.

I am honored to be a part of such a wonderful group of people.

I'm still really, really tired, but now it's a happy tired.

P.S. George, I'm really hoping you win the lottery.

Tired

I’m tired, just plain tired.

I really, really, really need a good night’s sleep. Michael and I have been getting up 2-3 times a night to check sugars for the last 16 months. And, there’s no end in site. You see, if I don’t have the alarm set to get up and check sugars, then I won’t sleep anyway because I’ll lie there and wonder what his sugar is all night.

I’m so tired I’ve slept through the alarm a few times. Evidently, I’ve been hitting snooze over and over again in my sleep, because eventually the alarm will wake me and it will be 30 minutes or so later than when I meant to get up and check.

But, it’s a necessary evil. We still have occasional nighttime lows. And, here lately, nighttime highs. Two nights ago we kept getting up and bolusing sugars in the 300s. Finally, at 5 AM I decided I’d had enough. As much as I hated to, I changed his set. (I found out he had a bent cannula)

Riley awoke to the stick of the needle and started to cry. When will it ever end?

Also, I’m mentally tired. Not from the numbers, but the other aspects of this disease.

I am still fighting a battle with my insurance company, a battle that has been going on for almost 5 months now.

I’m still having trouble getting Riley’s strips. I am able to get his 150 a month just fine. They are billed under pharmacy. But, the others I need every month, that’s another story. The rest of strips are billed as DME (Durable Medical Equipment). Don’t ask me why. It makes no sense.

The ones I get under DME I have to pay for up front (around $250), then the insurance is supposed to send a check to reimburse me for what is covered (90%). But, I have yet to get reimbursed for any strips that I have purchased since October 1st. And that, my friends, is a whole lot of freaking money.

I have been given several reasons why I haven’t received the money yet. The last reason is that the strips were purchased out of network, so now I may not get any of the money back.

I have someone working on getting me my money. But, in the meantime, I had to find a pharmacy that is in my network.

I went to this pharmacy yesterday (after calling Dr. M and getting all the paperwork faxed that I would need to get these strips), and was told that the insurance was denying the strips saying I needed prior authorization. This is how all my trouble started in October.

I tried to explain to the pharmacist that I did not need prior authorization and that he needed to bill it as DME. He just looked at me with this dumb look on his face. He called Medco (who handles the pharmacy benefits), but I told him to call the State Health Plan (who handles DME). He wouldn’t do it. And, there is not another pharmacy in my town that is in-network. (My wonderful pharmacist who I have been using for years is in the process of filling out all the paperwork, so he will be in-network.) But, until then, I’m stuck dealing with incompetence.

So, I have a call in to a lady at the State Health Plan to try and get her to explain to the pharmacist how to put the strips in his computer, so they will go through and I can get them. Until then, I’m running dangerously low on strips and may have to purchase even more with my own money.

Tears are streaming down my face now, hot tears of anger and frustration.

I feel so helpless. What else can I do? No one seems to want to listen to me when I explain to them why it's so important that I get these strips. I've written letters, the ADA has written a letter, but it's all falling on deaf ears.

Sometimes I look at people and wonder why they don’t fight for what they need. Why do they just roll over and play dead? But, now I know.

They’re tired, just plain tired.

My dance

I remember it like it was yesterday.

I felt a funny feeling in my rather large belly. Not really a pain, but more of a tightness. It was 6 AM. I lay in bed for an hour. The tightening was starting to get a little more painful and was now coming at 5 minute intervals.

Finally, at 7, I got up and told my mom. I pointed to my stomach and said, "I think it's time."

My dad was in the shower. My mom went and told him it was time to go to the hospital, but he didn't believe her. He went through his normal routine.

His face turned pale when he came out and saw me sitting on the edge of the bed holding my belly and panting.

I got up and got dressed. I put on make up and curled my hair. (I know, what was I thinking?)

Then, it was off for the hour drive to the hospital. I felt every little bump in the road. Every time I moaned a little my dad would speed up.

Finally, we arrived at the hospital around 9 AM and I was settled into the room.

It was a long day. Someone was in the room with me all the time. But, there was one time when everyone had gone somewhere and I was all alone.

And, I panicked. The enormity of what was about to happen hit me like a ton of bricks. I didn't think I was ready for this, not the labor itself (although I wasn't ready for that either), but I wasn't ready to be a mom. I was scared to death.

Finally, at around 7:30 that night I started pushing. And I pushed. And I pushed. And I pushed. I screamed some and I pushed some more. Then, I screamed some more. One of the nurses grabbed my face and squeezed.. hard. She told me to stop screaming and to breath. I was confused, didn't you have to breath to scream?

Finally, the Dr. came in. He kept telling me to push.

"Come on Penny, one more push."

"Come on Penny, one more push."

"Come on, just one more."

Are you starting to see a pattern here? I stopped believing him. I remember at one point I said , "I can't do this." He assured me that I could. He was right.

At 8:42 PM the pushing stopped.

He was here. He was perfect. He was mine.

I had wondered if I really had a purpose. People treated me like I didn't. After all, I was just another pregnant teen. But, the moment they laid him in my arms, I knew why I was here.

I was made to be his mom.

I took him home and I loved him with love that I never knew existed, pure, unconditional love.

Nothing else mattered to me, but him. He was my life. He was my heart. He was my inspiration.

I've loved him for 16 years now. I've tried to be a good mom. I've tried to lead by example. I've tried to be his teacher. But, I think he's been mine.

We've been through a lot, just the two of us. Many times when I wanted to give up, I'd look into his little face and find my motivation to go on, my motivation to be a better person.

I can't imagine my life without him. I don't know where I'd be had I not had him. But, I do know this, I wouldn't be happy. I couldn't be. A part of me would be missing.

If someone had told me when I was younger that I would get pregnant when I was 16 and that the father would leave me to raise the baby all by myself, I would have told them they were crazy.

I would have done whatever it took to stay on the path I had chosen. I was going to college. I was going to be a nurse. A baby was not in the plans and I wouldn't give up my dreams.

But, I didn't know. I thought his "sperm donor" and I would get married. I thought we'd be one big happy family with the white picket fence.

I'm so glad I didn't know. I would have changed it and I wouldn't have one of the best things that has ever happened to me.

He's my baby and I love him more than life itself. I've always told him he's my dance.

"Now I'm glad I didn't know,
The way it all would end,
The way it all would go,
My life is better left to chance,
I could have missed the pain,
But, I'd of had to miss.....the dance."

Happy birthday Holden! I love you!

Perfect Post Awards

Thank you Julia for awarding me with a Perfect Post Award for Because I Have To.

I'm truly honored.

Because I Have To

It was 4:30 in the morning. I heard a voice coming from the other room.

“Daddy?”

I nudged Michael to wake him and told him Riley had just called him. He immediately got up and went to see what he wanted.

Upon entering his room, Michael hears, “Daddy, will you check my sugar?” When Michael told me this, I sat up in bed. This can’t be good.

A few seconds later, I heard the Freestyle Flash beep and Michael called out, “It’s 55.”

Michael went to get some fruit snacks and some peanut butter crackers. Before, I could move I heard Riley’s voice again.

“Mommy, will you come hold me?”

I got up and sat on the foot of his bed and he crawled into my lap. About that time Michael came in with the snacks.

He sat there and slowly chewed the fruit snacks and then 2 peanut butter crackers. I noticed he was shaking. When he was done eating, I held him like a baby and wrapped the blanket around him. He lay there shivering with his eyes closed. I began to rock him back and forth.

I looked up and caught a glimpse of us in his TV. Me sitting there rocking back and forth with my sweet boy in my arms waiting for the sugar to take hold and start to work.

And, the sadness I’ve been keeping at bay for the last couple of months reached up and slapped me in the face.

I just stared at the two of us and wondered how in the world we got to this point and if it would ever end. Really, one of my first thoughts was, “Is there really ever going to be a cure?”

Riley’s sugar went up to an acceptable number and I lay back down in bed. But, it was a while before I was able to sleep again.

And, all day today, the image of us in the TV keeps popping in my head. My emotions have been a mixture of sadness and anger.

I’ve been so busy the last couple of months. Today I realized that it hasn’t been by accident. When I’m busy, when there’s always something going on, I don’t have time to dwell on his diabetes.

Don’t get me wrong; it gets plenty of my attention. But, I don’t dwell on it. I test, correct, and treat lows now without really batting an eye. Then, I move on to whatever task is at hand.

Today I realized what’s really going on. And, it’s one reason I was having trouble writing any posts.

I can be a little stubborn. OK, that’s not entirely true…I think Michael actually compared me to a bull one time (or 20, but who’s counting?). It’s one trait that Riley got from me. God help him.

Over the last couple of months if diabetes started to get to me, I’d push it aside. I didn’t want to think about it. I didn’t want to bring up all those emotions. Like I said, I did what had to be done, but I didn’t think about the emotions that come along with it.

I’m stubborn enough that if a bad thought started to enter my mind, I’d run it off.

I think that’s why I haven’t written a true diabetes post in a while. I didn’t want to dredge up all that emotion. I didn’t want to deal with it.

There was the time, when his sugar was 34 and after I gave him a whole pack of fruit snacks, he kept crying and begging for more. I’ll never forget that look on his face, the look of helplessness he had. He just kept pleading with me to give him some more. But, I knew if I did that what the end result would be. I knew he felt horrible. I knew the fruit snacks would begin to work, but Riley didn’t. He looked scared. He was looking to me for help, and all I could do was try to assure him he’d feel better in a few minutes.

At the time, I pushed it aside. He lay on the bed and I stroked his hair until he felt better. But, I never really felt the situation. I just lived through it.

Or there’s the time a few days ago when I changed his needle and when I gave him his bolus, he began to cry. With tears streaming down his face he said, “My needle burns.” I hugged him until he felt better. But, once again, I didn’t give it much thought.

Or there’s the times when he mentions a cure. Or when his eyes light up when another boy with D walks in the room. Or the times when he’s in the 300s and he’s hungry and upset.

I push my emotions aside because I have to. I tell him he can’t have any more fruit snacks, because I have to. When his needle burns I pat him on the back and tell him everything will be OK in a little while because I have to. I tell him that I hope one day there will be a cure because I have to. I pretend not to notice that he loves to be around other people with D because I have to.

Every once in a while, I have a day like this because I have to.

I had to pull off on the side of the road today. The tears in my eyes were making it hard for me to see where I was going. All the emotions I had kept inside came pouring out.

The unfairness of it all; the heartbreak I have for my child. The anger I have that this disease decided to take up residence in his body and the fact that there’s not a damn thing I can do about it.

But, I know that tomorrow, I'll go back to the way things were. I'll test his sugar, I'll count carbs, and I'll bolus, all without giving it a second thought.

Because I have to. I just have to.

Mean People Suck

I said a few days ago that I haven't felt like posting anything recently. But, some events over the past few days have really bothered me and so I was inspired to post something once again.

First, I want to preface that sometimes I say "you" in this post, but I don't really mean, you the reader. I think most of you are very nice people. Also, if I'm talking about you specifically you'll know, because I'll mention you by name (or the only way I know to identify you)

As most of you know, who read my blog regularly, I love basketball. This time of year A LOT of my time is spent watching basketball. Michael is the assistant coach of both the JV and Varsity basketballs teams at Holden's school. I am the stat keeper for both teams.

We played a team in our conference Friday night. We had played them once before this year and had won. It was an upset for them. They were supposed to kill us.

There is one boy on the Varsity team that is a really great player. J averages about 20-25 points a game. Sometimes when teens (and sadly, adults) are that good at something, they are cocky and usually not very nice to others on the court. J is not that way. He just loves basketball and goes out to play to the best of his ability.

When they announced the starting lineup for our team, the opposing team's crowd booed J. They didn't boo everyone, just him. First, that got to me. But, then it got worse.

They started the game, and every time J touched the basketball the crowd started to boo, loudly. Whenever he threw the ball to someone else the booing stopped. I was so mad I was about to cry.

What is wrong with people? He's just a high school kid. Why do you want to be mean to anyone, especially someone you don't even know?

My personal opinion is that most people are so self-absorbed that they don't really ever think about other people's feelings. They don't really care if it hurts anyone else as long as it makes them feel better.

And, that's another thing, why does it make you feel better? Do you really need to pick on a high school kid to make yourself feel good? If so, there is something really wrong with you.

Eventually, the crowd stopped booing. But, then our own parents started up. They were sitting right behind our player's bench. Most of the time that J touched the ball, one of them would start yelling at him to dish it off and stop trying to do everything himself.

First off, why in the world do you want to harass a player on your own team? Secondly, he's really about the only one on the team who can play decently.

If he was a ball hog I could see why they might do it. Not that it would make it OK, but I could better understand their motivation. But, he's not. He not only scored 26 of the 52 points scored by the team, he also had triple the amount of assists of anyone else on the team. That meant he dished the ball off plenty and others scored because of it. There was one game where he had over 20 points and he had 9 assists.

The only motivation I can think of is jealousy. They were jealous that their kid wasn't scoring most of the points. They need to stop comparing their kids to J. They need to focus on the good attributes that their kids have and quite comparing them to someone else.

What makes people act that way? When are people going to learn that it's not about them and their feelings all the time? If people would stop comparing themselves (or their kids) with others life would be much simpler. I just don't understand why you can't be yourself and let others be themselves. Even if you don't agree with the way other people live their lives, why do you feel the need to condemn them and belittle them? Why do you care? As long as society is not suffering because of the actions of these people, keep your mouth shut.

This brings me to the second part of my post. Like I said, the first incidence happened on Friday. I never really thought to post about it, because I didn't really think any of you would care.

But, I read this post today and my anger flared once again. Not because of the post itself, but because of a comment made to this post.

This is not the first comment this person has left, but it was kind of the straw that broke the camel's back for me.

First, let me address the anonymous issue. If you are so sure that Allison is such a horrible person then why are you so afraid to let anyone know who you are? If you're going to be mean to people, you should at least own your meanness.

Secondly, not to sound cliche, but if you don't have anything nice to say then....don't say anything at all. I don't expect you to like everyone, but if you don't, why can't you just keep it to yourself? Why must you try to hurt people's feelings? It's just mean.

Maybe you're saying I shouldn't get involved. It's really none of my business. But, that's another problem these days. Unless something directly effects them people just don't want to get involved. I know Allison doesn't need my help. I think she's done a fine job responding to Mr. or Mrs. Anon all by herself.

Anonymous, if you're reading this, back off. She's just trying to make her way through this world like everyone else. Try focusing on what you can do to make yourself a better person and quite critiquing everyone else.

Hi

Dear Reader,

I’m still around and still reading all of my usual blogs. I haven’t really had time to sit down and post lately. Nor have I had the desire, to be honest.

Things around here are pretty good. Riley spends most of his time playing Lego Starwars or playing basketball in the living room. His sugars have been doing good. I've found that I don't really think about diabetes much anymore.

Holden is still playing basketball. He’s doing well with that and his grades. He’s in the middle of midterms right now. He’ll be turning 16 in a few weeks.

I just wanted to write a little note to say “hi”. I’ve been thinking about this blog a lot lately. I’m wondering if maybe it’s served its purpose. I don’t know. We’ll see.

Take care.

Love,
Penny

Delurk please

It's delurking week. (Yes, I know the week's almost over) So, if you read this blog regularly and don't comment or you've just stopped by, or you got here by some weird google search like "shaved armpits" (yes, I'm sad to say someone found my blog by searching for that), leave me a comment. Let me know how you got here and if you like what you see. Delurk! I dare you.

And, I finally got over my stubbornness and switched to the new blogger. We'll see how that goes.

Everything's beige

Just wanted to update you to let you know that Riley is much better now. He hasn’t had any ketones since late Saturday afternoon. He hasn’t had any temperature since then either. His appetite has picked up and his sugars are starting to even out a bit. They did well yesterday until about 5 PM and then they ran high for about 5 hours or so. Then, at 1:30 this morning, he clocked in with a 51. Go figure.

Anyway, he’s better now. Thank you all for your thoughts and good wishes.

Why purple is no longer my favorite color

I'm thinking it all began around 12 AM Friday morning. Riley woke up to use the bathroom and started crying. He said his legs hurt. A quick check of his legs revealed no swelling, bruising, or anything out of the ordinary.

Michael put him back to bed, but within minutes, he was crying again that his legs hurt. Now, you have to understand, Riley hardly ever cries. If he does cry, it's usually because he's upset with his brother. He really never cries about pain. My office is in a health department. I hear kids crying all day long when they get their baby shots. Riley has NEVER cried while getting a shot. Even when he was a little baby. Pain just doesn't seem to affect him the way it does others. So, when he wouldn't stop crying that his legs hurt, I knew something was wrong. I just didn't know what.

I told him to come into our room, and he was limping. I let him crawl into bed with us (which I don't normally do) until he fell asleep. After he'd been asleep for a while, Michael picked him up and put him back into his bed. In a few minutes, he was crying again. This time I got up and gave him some Motrin and lay in his bed with him for a while. He slept the rest of the night without incidence. His sugars ran around the usual during the night. Nothing out of the ordinary. But, at 6:30, it was 102 and at 8:15, it was 149. That should have been my first clue.

I don't work on Fridays, so I was home with him that morning. He woke up and started playing his xbox. He said his legs were better, but his lower back was hurting. Hmmm, strange.

I fixed his breakfast and instead of scarfing it down like he usually does, he just sat there and stared at it. Then, he started to shake and asked for a blanket. When I went to wrap him in it, I brushed against his forehead. He was burning up.

I checked his temperature and it was 102.2. I started to feel panic rising up into my throat. My first thought is that he has a UTI, thus the back pain. Also, he'd had a cough that had been coming and going over the past week. Could it be pneumonia? Now, I really started to panic. I got my stethoscope and listened to his lungs. They sounded fine, so I didn't think that was the problem.

He started begging me not to make him go to the Dr. But, within minutes I was on the phone with his pediatrician's office. I made an appointment for an hour and 45 minutes later. We live an hour away from his ped., so it was a mad rush trying to get ready and get there on time.

Riley slept almost the whole way there. We didn't wait long once there. I made sure to stress with the Dr. about how he never cries and how he cried about his legs. Being a nurse, what I was thinking could be wrong was not pleasant and I was trying to force the panic down that was about to bubble out.

First, he said he was going to get Riley to pee in a cup. (which is exactly what I wanted done) Then, he decided to forgo that and do a CBC (complete blood count), which I was even happier with, since a normal result would dispel the fear I had creeping up inside me.

Before he did any of that, he listened to his lungs and looked into his throat. All which checked out just fine. But, then he looked into his left ear and asked Riley, "Does your ear hurt, bud?" To which Riley said no. "Well, you have a pretty bad ear infection there." I sort of let out a sigh of relief. Now, we knew the problem. He said his right ear was pink also.

They did the CBC, just to be sure, and everything came back fine. The achy legs and back probably just came from the increased temp. On the way out the door, the Dr. asked if Riley was allergic to anything. (We go to a very large peds. office with about 10 doctors in it) I replied with, "I don't know. Other that insulin he's never taken anything prescription." I could tell by the look on his face, he didn't even know he had D. "You mean he's almost 5 years old and has never had to take an antibiotic before?" Yep, never. Holden was a whole different story. He kept an ear infection when he was younger. Kind of ironic that my child who depends on medicine to keep him alive is otherwise as healthy as a horse. (Exactly where does that phrase come from? Don't horses get sick?)

I left the office with a prescription for Amoxicillin. By this time, Riley was hungry. We went to McDonalds (his choice, not mine) and while there I took him into the bathroom to check ketones. Even though his sugars hadn't been out of control, I thought I'd check to be on the safe side.

As soon as the urine hit the stick it turned a deep shade of purple. The panic started to rise again. We'd never had ketones like that before. I immediately called Dr. M's cell phone and left a message letting her know what was going on. She called back within about 2 minutes to reassure me and started her speech about what to do.

One of the first things she said was, "Don't trust the pump." She told me to keep his basal the same, but to give all of his boluses by syringe. Since he was spilling ketones it was very important that he get the insulin he needs. The only way to be sure that he was getting his insulin was by syringe. It made sense to me, but I didn't like it. I hadn't given Riley an injection since he started on the pump in March. When I told Riley about it, he didn't like the idea either. But, since then, he's been getting most boluses by syringe.

Even though I know he's getting his insulin, his sugars are still pretty much through the roof. His lowest sugar since all this started was 124, but that didn't last long. His next sugar was 220, then 349. His highest sugar has been 483. The average of all his sugars yesterday was 247. Yuck,not a good number. Thankfully, he doesn't seem to feel too bad. He did sleep more yesterday than usual, but for the most part, he seems to feel OK.

I started following Dr. M's instructions and by 5:30 last night, his ketones were negative. When he went to bed last night they were still negative. But, this morning the stick turned that darn purple color again.

To top it off, he was due for a set change this morning. This complicates things. You see, Riley ALWAYS goes low after a set change. To remedy this I have learned to decrease his basal 60% for 3 hours after his set changes. This helps immensely. He still might run on the low side, but it tends to keep those nasty 40s and 50s out of the picture.

He was 315 at his set change. I decided not to decrease his basal and see what happens. I don't want him to go too low. Dr. M stressed the importance of him having "plenty of sugar" to go into his cells and "plenty of insulin" to get the sugar into the cells.

His temperature is doing a little better. I was alternating Tylenol and Motrin about every 3 hours before to keep his temp at bay. Thus, helping to keep him from getting dehydrated and making his ketones even worse. (I'm thinking that's what brought the ketones back during the night. It's really hard to make a four year old wake up and drink an adequate amount of water in the middle of the night.) But, now we're down to having to take something about every 6 hours.

I'm hoping we're on the road to recovery and I'm hoping not to see that stupid purple color any more.

The trip, a late Christmas present, and a sweet ride

We are back from our trip. We had a great time. As I've mentioned before, Michael and I are the youth leaders at our church. We took the youth (12 total) to Gatlinburg, TN to an Xtreme Youth Conference. It started Thursday night and ended at noon on Saturday. We got to see some great speakers and bands. The bands included: Rachael Lampa, Jeremy Camp, Newsong, Hawk Nelson, and Third Day. The speakers were Tony Nolan, Josh McDowell, Ergun Caner, and Johnny Hunt. My favorite band/singer was Jeremy Camp, but Third Day put on a great show too. My favorite speaker was Josh McDowell. We heard him speak twice at this conference and we had heard him speak at a youth conference before. He is just a phenomenal speaker. Ergun Caner also held my attention and even received a standing ovation after his talk.

Anyway, we had a safe trip there and back. It was about a 10-hour drive each way. Surprisingly, Riley's sugars were pretty good. The long time in the car didn't seem to affect his sugars much. The only time I used the temp. basal was about 6 hours into our trip home. He started to run a little high. But, the temp basal (an increase of 10%) seemed to take care of the problem.

We brought in the New Year at church. It was nice. We got home around 2 AM and we were able to sleep until about 10:30. I couldn't begin to tell you when I last slept that late. Riley's sugars did just fine sleeping in. Have I ever mentioned how much I love the pump?

Speaking of the pump. Remember when we were having some pump issues? Well, the Saturday before Christmas at around lunchtime, Michael tried to give Riley a bolus and his pump alarmed yet again. It was the same alarm as before. Of course, Animas was closed, but I left a message and someone called back within about 5 minutes. As soon as she came on the phone she confirmed that it was the same alarm code as before and then made sure she had the right address.

She shipped out a new pump. It arrived the day after Christmas. When Riley first got his pump, we ordered a blue one. But, when we went to the pump start, they had a silver one to play with. Riley really liked the silver one. The lady on the phone asked if Riley still wanted a blue pump. I went and asked Riley and he said he wanted silver.

He now has a silver pump. Just yesterday, he looked at me and said, "Mama, I like my new silver pump."

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I got this idea from Kerri's blog. You are supposed to take each month and write the first sentence of "a definitive post" for that month.

Here it goes:

January: It's hard to remember when the waves weren't crashing around me.

February: The pump arrived at 9:50 this morning.

March: I knew that adjusting to the pump would be hard, but I had no idea how hard.

April: Six months ago today at this time, Riley was sitting in the floor watching TV and eating a frosted strawberry poptart and drinking a big glass of apple juice.

May: What is is about "firsts" that make me crazy?

June: One of the hard things about having a young child with diabetes is that they often cannot tell when they are low.

July: Holden has had allstar games this week.

August: Michael came home from his first day back at work with some disturbing news.

September: note: I got the word "klempy" from Lyrecha.

October: Walk of Hope is coming up this Saturday.

November: I can't post about what it feels like to live with diabetes.

December: Riley had an endo. appointment today.

Looking back at those posts made me realize how far we have come in the past year. There have been many ups and downs (or highs and lows, if you will), but, man, has it been a great ride.

Here's to a year filled with twist and turns, ups and downs, and a few even spots where you just coast while the wind whips through your hair. A year filled with butterflies in your stomach, moments of pure calm, and moments when you feel like your lunch is going to come back up.

I hope your ride this year is great. And, when you get to the end, with your hair a mess and your stomach queasy , you just smile and say "I want to do that again!"