Year End Meme

I'll post about Christmas later. (It was great, by the way.)

I want to end this year blogging like I have the last two years. I will post a sentence from one definitive post from each month.

January: Nice to Be Amongst the Living

"I started this blog to help other parents of kids with Type 1."

February: It Makes Me Put My Hand Over My Heart

"While standing for The National Anthem at one of Holden's basketball games last week I noticed that nearly every one was standing with their hand over their heart."

March: It's the (Seemingly) Little Things

"A lot of times with life it's not the big events or the times in your life that get the most attention that have the most significance."

April: Diabetes Burnout: What Do You Do?

"Everybody gets burned out sometimes."

May: Just Imagine

"It was Riley's bedtime."

June: And I'm Off...

"I'm officially off work for the summer."

July: How Much Life Has Changed Since Diagnosis

"Every couple of months or so we get a newsletter in the mail from the medical center where we got pump training."

August: Amen

"Riley's overheard prayer:"Dear God, Grandaddy is a good grandaddy."

September: Running At 120%

"Sunday night Riley had a stuffy nose."

October: Three Years Chained

"Three years ago today was the worst day of my entire life."

November: Hope, Belief, Pain, and Faith

"Today marks 3 years that I have been blogging."

December: Head or Heart (or Kidneys or Eyes Or...)

"Every parent wants what’s best for their child."

It Wasn't a One Time Thing

Back in September Riley ended up in the ER because he was having trouble breathing. He did a round of antibiotics and a round of Prednisone and used an inhaler as needed. After a few days he was better. The doctors didn't really have an explanation for what had happened. All they would say is "maybe it's a one time thing". It had all started with a stuffy nose.

Friday, Riley started with a stuffy nose again. By Sunday afternoon he was wheezing.

I gave him his inhaler and it helped to clear him up. But, after a few hours he was wheezing again. He needed his inhaler about every four hours, including twice in the middle of the night.

I took him to the doctor today. He's on Prednisone again (oh, joy). The doctor said I can give the inhaler every 2 hours if needed (and I've had to do that a few times). And, that if I have to continue to give it every 2 hours that I need to call back and they'll put Riley in the hospital.

As I write this Riley is jumping up and down on his mattress in the living room. (We are doing our annual tradition of sleeping in the living room under the Christmas tree lights.) He is wheezing and coughing (he had his inhaler less than an hour ago). When I tell him to calm down so he can breathe better he tells me he's trying to bring his sugar down.

45 minutes ago it was 375. I've increased his basal 120% like last time he was on Prednisone. I'm hoping it will work.

I'm also hoping that this Prednisone does it's job and I can stop using the inhaler so often and then stop using it at all.

This time instead of "maybe it's just a one time thing" I heard, "maybe he'll grow out of it".

I hope he "grows out of it" before Christmas.

1.9%

As is the usual with this blog I have poured out my pain and dispair in the last couple of posts. I started this blog to be a help to other parents going through the same thing. As I've said before, it became more of a help to me.



When I'm having a bad day D-wise I come here and vent. I talk about the highs and the lows. I speak of the pain this disease has caused me as well as my fears. Every once in a while you'll get an uplifting post from me, but not very often.



It's kind of like when you get good service at a restaurant, you appreciate it, but you don't say much about it. But, if you go to a restaurant and get horrible service you tell everyone you know.



When I'm getting horrible service with diabetes I write about it here.



98% of the time diabetes is way far in the back ground. It gets the time and attention it needs and deserves and then I move on. Occasionally, I get in a rut and the other 2% comes out in my posts.



Right now I'm very happy. For one, this is the last week of school before Christmas break. Since I am a school nurse now my whole family is pretty much on the same schedule. My kids, Michael, and I all get out 1/2 a day on Friday. Then, we don't have to go back to school until January 5th. I can't even convey in this post the excitement that brings to me.



Earlier today the teacher next door and I actually counted up the seconds we have left before Christmas break. It doesn't sound as long when you put it in seconds.



I can't wait to be at home for a couple of weeks with my family.



I'm somewhat happy diabetes-wise too. We've had a rough couple of months. Riley's sugars have been high and it seemed that no matter what I did they would stay that way. Now, he's starting to even out some. It has taken several weeks of increasing his basal to finally get to where we are now. I guess I should have been a little more aggressive with the increases, but I was trying to avoid lows too.



Riley is so excited about Christmas. I love to see the smile on his face and the glimmer in his eye every time we move the candy cane on Santa's beard to count down the days until Christmas.



Every day is exciting to him. I am trying to catch a little bit of the excitement myself, trying to see the world through his eyes.



I'm trying to let the little things go. I'm trying to focus on the good and pray my way through the bad. I'm learning to let the laundry pile up (didn't take too much persuasion for that) and instead spend time with my kids.



As far as Riley is concerned diabetes is in the background 99.9% of the time. I'm trying to learn from him how to get my other 1.9%

Fear

This post was inspired by a post written by George. He spoke about how he worries about having his leg amputated and how he worries he might have a heart attack in his sleep.

Hearing his fears brought mine bubbling up to the surface.

My biggest fear is having one of my children die before me. I pray almost every single day that God does not let either one of my children die before I do. I can't really think of anything worse that could happen to a parent.

Holden is seventeen. My fear for him stems from him being out on the road. I pray for his safety several times a day. Every time I hear his car pull into the driveway, music blaring, I say a silent prayer of thanks.

A parent worries about all of their children. We worry that they'll be safe and we worry that we're not screwing them up too badly.

But, when a chronic disease is brought into the mix, worry and fear take on a whole new dimension.

Early on in Riley's diagnosis I was fearful of a lot of things. I worried about him whenever he was not with me. I worried that he'd go low and no one would know what to do. I worried that I wasn't taking adequate care of him, that I wasn't capable of doing what was needed for him.

I didn't go to the movies for over 2 years after his diagnosis because I was afraid that my cell phone wouldn't pick up in the movie theater and that my mom might need me to ask me something about Riley's sugars and she wouldn't be able to reach me.

Those fears are still there to an extent, but not to the extent that they used to be.

I cried the whole summer before Riley started kindergarten. But, once he got there I realized that he was doing just fine. His teacher did an excellent job taking care of him. I learned to relax a little. I learned that I was not the only one who could take care of Riley and his diabetes.

I relaxed enough to go to the movies. Michael and I even went away for a weekend 2 1/2 years after Riley's diagnosis. I wouldn't do it earlier. I worried about being too far away from him. I worried that he would need me and I wouldn't be readily available.

Those fears have subsided a bit. But, there are still fears that have been there since day one and that are still there. I can't make them go away.

I realize that all of this may seem silly to many of you. You may call them irrational fears. Even if they are irrational, they are still my fears. They don't haunt my every waking moment. But, irrational or not, they are there.

My husband and I check Riley's sugar at least 2 times during the night while he's sleeping. Still, the first thing I do every morning when I get up is walk to Riley's bedroom door and listen for the sound of him breathing. If I can't hear him breathing I go into his room and place my hand on his chest. Once I find him still alive I take a deep breath and say a silent prayer of thanks.

Riley doesn't know I do this. I don't think Michael even knows I do this. But, I've done it every single morning for the last 3+ years. I learned of Dead in Bed Syndrome early on in Riley's diagnosis. And, try as I might, I can't get the thought of the horror of waking up in the morning to find your child dead out of my mind.

I guess maybe some parents of non-D kids might be able to relate to that a little. I think a lot of parents worry about SIDS when their children are babies. But, once they reach their first birthday that fear usually subsides.

I believe I'll have this fear forever.

I also worry about complications. Like I said, it's not an ever-present kind of thing. But, it's a fear that enters in and out of my thoughts, particularly when Riley's sugars have been high for a few days.

When I was doing research for Walk of Hope I came across this statistic: "By 20 years after diagnosis most people with Type 1 diabetes will have some form of complication".

It has haunted me ever since. Riley was diagnosed when he was 3. I can't bear the thought of my son having some complication from this disease by the time he's 23.

Here is another disturbing figure: 24% of type 1 diabetics will develop retinopathy (damage to the nerves in the eye caused by high blood sugars) after 5 years, almost 60% after 10 years and 100% after 20 years.

Again, when Riley's 23....

23, just getting out of college, just really starting life....

Fear can be crippling. But, it can also be motivating.

Sometimes the fear cripples me, sometimes it wins. Sometimes I cry myself to sleep or lock myself in the bathroom and sob because I"m overwhelmed with it all.

But, most of the time my fear motivates me. It motivates me to hold onto my sons a little tighter. It motivates me to log Riley's sugars. It motivates me to teach him a little at a time so that he can one day do all of this on his own.

But, most of all, it motivates me to help find a cure. The only way to get rid of these fears is to get rid of this disease.

That's exactly what I'm trying to do.

(**edit: Go read this post to hear just how real complications can be. While there take time to give Kate and Lance a hug or two.)

'Tis the Season (for giving to Faustman's research)

People tend to be a little more generous around this time of year. They seem to have the holiday spirit.

Are you feeling generous?

Thursday, December 18 there will be a diabetes walk at my son's school. All of the proceeds will be donated directly to Dr. Faustman's research at Massachusetts General Hospital.

My son attends a school that has about 320 kids. Of those 320, 5 of them have Type 1 diabetes. They range in age from 6-17.

If you'd like to help and donate to a very worthy cause email me and let me know and I'll tell you where to send the check. Or, if you'd like you can click here and donate on-line. If you choose the on-line option please email me (pennylane5001@embarqmail.com) and let me know your donation amount so I can add it to the walk total. Any amount is greatly appreciated.

It all adds up to a cure.

**edit: I just read the Faustman news letter!!! I read it with a huge grin on my face. I have the most hope I've had in a while. Click here to read the newsletter and have a few grins of your own.

An Opportune Low

Holden had another basketball game last night. As we stood in line to buy food Riley was eyeing some very delicious-looking cupcakes.

"Can I have one?"

"Let's see what your sugar is first."

I checked his sugar while standing in line: 63.

"Yes. I guess you can."

"Can I eat it first?"

"Yes, you need to go on and eat it to bring your sugar up"

Normally, he would get a juice box before he could eat but this particular cupcake was piled high with sugar laden icing. I knew he would eat the icing first. He always licks all the icing off first and eats the cake part last.

I rechecked him in 15 minutes: 93. He got a bolus for the cupcake and the cheeseburger he ate.

Two hours later he was 91. Since he still had insulin on board and we'd be at the game a while I told him he could have a snack. We got back in line and this time he eyed something covered in chocolate. I asked the person behind the counter what it was. It was peanut butter crackers covered in chocolate.

Riley ate two of them. I bolused accordingly and two hours later he was 88.

Even thought is sugar went low it was not dangerously low. He got to eat a few treats and his sugars responded rather favorably.

We needed a night like that.

Four

That's the number of birthday parties Riley attended this week. One was a party at school. The other three were all this weekend.

Things eaten at said parties:
cupcake, Doritos, cake, hot dog, potato chips, cookie, cake, peanut butter ball, sausage balls, Cheetos, crackers, cake, ice cream.

His sugars are still on the high side most days. I'm finding that blood sugar control has become much harder over the last several months. Riley's endo thinks that the "honeymoon" (what a stupid word for it) has finally ended for good. This means his pancreas doesn't help out at all anymore.

It just makes me want to cry. But, I won't. Past experience tells me it won't do any good.

Head or Heart (or kidneys, or eyes, or...)

Every parent wants what’s best for their child. You want them to grow up strong and healthy. You want them to have a strong and healthy body. You also want them to be mentally strong, not just smart, but mentally healthy too. You want them to have high self-esteem. You don’t want them to feel isolated or different.

The physical part isn’t too hard with most kids. You make sure they eat healthy. You make sure they brush their teeth at least twice a day. You take them to the doctor for regular check-ups.

The mental part is a little harder. But, most kids just want to be treated like everyone else. They want to belong, fit in. They don’t want to be singled out amongst their peers.

Throw diabetes into the mix and it complicates things a bit.

What do you do when keeping your child physically healthy is a detriment to them mentally?

Or, keeping them mentally healthy is a detriment to their physical health?

Parents of kids with diabetes are faced with this dilemma on a daily basis, usually several times a day.

It’s been wearing on me as of late.

Usually if Riley’s sugar is high he will take insulin and skip snack. But, what about when there’s a birthday party at school and his sugar is 350 and the main menu items are cupcakes and ice cream with a side of potato chips?

Should I make him skip the party to keep his body healthy? Or should I let him go on and eat knowing the food is going to send his sugar soaring even higher just so he won’t feel singled out?

I’ve done both. And, I’ve felt guilty about both.

It breaks my heart to think of him sitting at his desk watching everyone else eat their treats. But, it also bothers me to think that his sugar is already that high and, before going down, will probably go higher.

9 times out of 10 if peers are involved I let him go on and eat and just deal with the high later. There are enough things he has to do that make him stand out. I don’t want to add to that.

He’s the only one in his class who pulls out a blood sugar machine before he eats. He’s the only one who sometimes has to sit out at recess because his sugar is low. He’s the only one that the teacher counts his fries before he eats.

Yes, there’s enough already to make him feel different.

Lately, he’s had a lot of highs. I’m guessing he’s going through a growth spurt. I have been increasing basals on a weekly basis for the past several weeks. Still, he sees the 300s at least once a day.

I guess that’s why this has been weighing on me so much lately. When his sugars have been pretty much in range it’s easier to let him have cake and ice cream occasionally even if his sugar is high at the time.

But, now, he’s having all these highs….

It is a horrible feeling when you know whatever decision you make is going to impact your child in a negative way somehow. I’m constantly second-guessing myself. I feel guilty if I let him eat and I feel bad if I don’t.

I don’t know how to solve the problem. A cure, maybe. That would be nice. But, until then what do I do?

What do you think?

Our most difficult meal of the day, sugar-wise, has always been breakfast. For some reason, Riley’s carb coverage is the most at breakfast.

Riley eats the same breakfast every morning: ½ cup cereal, ¼ milk (total of 22g carbs). I know cereal is usually a no no for most PWD but Riley’s sugars usually do pretty well. Or, at least they do now.

For a while he ate a Go-tart every morning (25g of carbs). Yes, I know, lots of sugar, little to no protein, but he liked them, they were easy, and his sugars really did OK. Or, they did after a while.

Riley will eat the same cereal for a while until he gets tired of it and wants to change brands. His sugars do fine, after a while.

My point is this, I have found that when Riley switches cereal or he eats something different than he usually does for breakfast his sugar will be high 2 hours later. This will usually happen for 2-3 days. But, if we continue with the same breakfast, eventually, his sugars even out and are just fine 2 hours later.

Thoughts? Does his body get “used to” what he’s eating? Would it work with other meals?

Riley has been eating cereal every morning for a while. I was out of milk this morning, so he ate a Go Tart. He hasn’t had a Go Tart in a while. I totally expect his sugar to be high at his next check, when it is usually in range.

Does this happen with anyone else?