Week One

Week one of school is over. And, to put it mildly, it's been hell.

Riley's sugars at school this week ranged from 52-360. His sugars while at home: 43-460.

Of course we've had lows before, even runs of lows. He might have a day here and there where he goes low a few times and we may have 2 or 3 days in a row where he goes low at least once a day. But, in the almost two years we've been dealing with this disease, we have never had a whole week where he went low at least once a day.

It's just so frustrating. I will be sitting down tonight and studying Riley's logbook. If I can't come to a conclusion on my own, I'll be faxing sugars to his endo and asking for help.

The lows are scary. Really scary. And, they make Riley feel like crap. That's what I hate the most.

But, on the bright side, Riley has thoroughly enjoyed every single day at school. He loves recess and PE and Spanish. He went to library today and checked out a book and he can't wait for me to read it to him.

It does give me some comfort that Riley is having a good time despite his diabetes. And, hearing him ramble on about what he did during the day and who got a mark on the board for bad behavior, is great.

But, in the quiet of night, I watch him sleep and my eyes fill with tears. My brave little man has no idea how much more he has to face than the other kids in his class every single day. He has no idea the fear that the lows he's had lately put in my heart. He has no idea what these fluctuations are doing to his body.

And, I want to keep it that way for as long as I can. I'll bear that burden for now. If only I could bear the rest for him too.

It's driving me crazy...(er than I already am)

Riley's had quite a few lows lately. I'm talking 40s and 50s. They started on Friday. We went to a football game and he played in the playground the whole time (with a decreased basal), he started running low after that, but I thought I just didn't decrease his basal enough.

I've increased his insulin sensitivity factor. I've decreased his basals and yet he's still going low. I'm even subtracting insulin from pretty much every single bolus he's getting. It is really driving me crazy. I hate the low, lows as much as the high, highs.

When I got home yesterday he was asleep on the couch. I woke him up because I knew if he got too much of a nap in it would be harder to get him to go to bed on time. As soon as his eyes opened he said, "My sugar feels low." It was 43. What if I hadn't woken him up? I don't even want to think about it.

He ran high pretty much all through the night. I chalked that up to rebounding.

Then, at 2:15 today his teacher called to tell me his sugar was 60. 15 minutes later he was 85. I said he'd be OK until he got home.

When he got to my mom's he was 151 and he had a snack.

My mom just called and now he's fifty-freaking-nine again!!!!

It's just so frustrating. So very, very frustrating. His total daily dose of insulin has decreased from 10 units to 9 units over the last week.

I decreased his basals on Saturday and again yesterday. What in the heck else can I do? I don't want to decrease them too much and make him high all the time either.

Have any of you dealt with this before? Any advice? I'm at my wits end. (and my wit wasn't very long to begin with)

Day 2

Day 2 at school went better than Day 1. Riley started yesterday morning with an 89 before breakfast. And, yesterday, I actually remembered to bolus him for breakfast. But, I still screwed up a little (more on that later).

His snack time sugar (2 hours after his breakfast bolus) was 247. Not great, but not 360 either. The pump suggested to give him 1.20 units. This seemed awfully high to me again, so I told Holden to give .90.

He didn't go low at recess. And, at lunch his sugar was 102.

He was so excited when he got home. He went to Spanish class yesterday. He just loved the Spanish teacher. Holden has the same teacher for Spanish too and he is one of Holden's favorite teachers. I also got to hear about how T got 2 marks beside his name because he wouldn't be quiet and listen. The same boy got in trouble the day before for running up the slide the wrong way.

All in all school went rather well yesterday. He was ready to go back this morning, so things must be going well.

When I gave him his breakfast bolus this morning ( I know, 2 days in a row. What can I say?) I noticed that something was wrong. I don't know why I didn't notice it yesterday.

Riley's carb coverage at breakfast is the highest it is all day, 1:28. But, his pump was set to start the 1:28 at 8 AM. During the middle of the night his carb coverage was 1:40. So, since he's eating breakfast earlier now the pump was showing what to give for 1:40 coverage. I changed the setting so that it's 1:28 again. Hopefully, that will help with this snack time sugar today.

I changed all of his basals Sunday night, taking into account that he's going to bed earlier and eating breakfast earlier. Now, he even has a weekday basal rate and a weekend basal rate. But, I didn't think about changing the time on his carb coverage.

And, another thing to add to my list for nomination for mom of the year, I forgot to send Riley's machine to school this morning. I know a lot of people have a machine at school and a machine at home. But, I chose to just send his machine back and forth. That way I know what his sugars are doing every day. I don't want to wait until Fridays to find out how his sugars have been all week.

Today was also a site change day. Riley tends to go low after site changes. That's why I decrease his basal 60% for 3.5 hours after a site change. It helps, but he still has a low sometimes. I even decrease the amount of his breakfast bolus too.

After I changed Riley's site this morning, he turned to me and said, "You know this means I'm probably going to go low don't you?" It still angers me that he has to know things like that.

I should be getting his snack time sugar called to me any minute now. Then, I'll see how day 3 is going sugar-wise. But, Riley-wise I know things are fine. He's enjoying school and I'm so glad that he is.

Holden just called and his snack time sugar was 261. Ugh.

The first day

Riley's first day had some ups and some downs, literally. His teacher certainly got broken in well on the very first day. I kind of felt sorry for her at one point. She didn't sign up for this when she became a teacher. But, I didn't sign up for it when I became a mom nor did Riley sign up for this when he came into the world. We were all drafted against our will.



Holden called me at around 9:40 AM. It was Riley's snack time and his sugar was 360. Holden had plugged all the numbers in the pump and it suggested a bolus of 1.65 for the sugar and Riley's snack. Thinking this sounded kind of high I asked how much insulin Riley had on board. "None," was his reply.



Being that Riley had just been bolused about 2 hours earlier for breakfast, he should of had some insulin lingering around. And, then it hit me, "I don't remember giving him any insulin this morning." I unhooked his pump to check the line for bubbles, I reconnected him, then, I stuck his pump in his pocket. I never bolused for his cereal.



I really started my child's first day of school off with a bang. I have never forgotten to give him insulin before. I picked the perfect day to do it, didn't I?



I debated about not telling you guys about my screw up, but decided, what the heck? Everyone screws up and I screwed up royally. Maybe this will help some other parent out there to feel better about themselves.



"Well, even though my kid has diabetes, I , at least, don't forget to give them insulin like that poor dumb mother." Hey, I'm glad I could be of help.



Riley has been having some lows lately (but, that's a whole other post), so I told Holden instead of giving 1.65 to give 1.20 units instead.



A little later my mom called to check on Riley. I told her the scoop and she asked when they would check him next. I told her I assumed it would be at lunchtime.



An hour later my cell phone rang, "Hi, Penny, this is Mrs. W, I just called to let you know Riley is OK. I had him check his sugar and it's come down to 218. I'm glad you gave me that timer or I would have forgotten to get him to test again." (When I spoke with his teacher last week I gave her a kitchen timer to use to set after Riley went low to remind her to test again in 15 minutes to see if he'd come up.)



I also instructed her that if he got insulin for a high sugar I wanted him to test again in an hour to make sure it was coming down. But, somehow, I don't know why, I didn't really expect her to do it. But, she did. Riley's sugar had come down a little too much for my taste, but I knew he'd be eating and testing again in a little over an hour, so I hoped he'd be OK.



An hour later my cell phone rang again, "Hi, this is Mrs. W again. I'm so sorry to bother you."



"You're not bothering me at all."



"Well, we were outside on the playground and Riley came up to me and said his sugar felt low and it's 59. We're going to eat lunch in about 20 minutes. Do you just want me to give him a juice box?"



"Yes, give him a juice box and have him check again in 15 minutes to be sure it's coming up."



I had visions of my child sitting on a bench sipping juice while all the other kids ran and played. It broke my heart. I cried the hardest last night when I thought about that happening. And, now, it had happened on the very first day.



About 30 minutes later Holden called me back. Riley's sugar was 125 and he had eaten his lunch. The pump suggested 0.85 units. Not wanting him to go low again, I told him to give 0.70 units.

The rest of the school day went off without a hitch. His snack time sugar after school was 208. Then, he dipped down to 69 at supper. (See what I mean about the lows.)

When I picked Riley up from school yesterday he met me with a big grin on his face. When asked what his favorite part was he , of course, said recess. (Even though he went low while at recess.)

I asked him if when he went low he had to stop playing. He said, "No."

"What? You kept playing?"

"No, but no one else did either. All of us came in at the same time."

So, my vision of him sipping juice while everyone else played was all wrong.

As far as Riley was concerned he had an awesome first day of school. And, at the end of the day, I know that's what really matters is his perception of how things went.

When I woke him this morning I said, "You've got to get up so you can go to school," a huge grin spread across his face again.

He's ready for another day and so am I.

(P.S. First day of school pictures will be forthcoming. Hopefully I will get a new modem today and I can actually post from home.)

He's at school

Well, Riley's at school and, somehow, the world didn't end.

It's been a rough weekend. My internet modem was fried by lightening, so I wasn't able to blog all weekend, which is probably a good thing for you. My posts wouldn't have been pretty.

It all started on Friday. The school that Riley attends celebrates Gingerbread Day every year. It's a time for the kindergartners to come to school with their parents to see their classroom and meet the teacher. They read the story of the gingerbread man and then eat gingerbread cookies.

I was so nervous that morning that I was literally shaking. I felt like I was going to be sick on my stomach and I wasn't even leaving Riley there, I would be with him the whole time. I could only imagine how I'd be when I had to leave him there.

I knew he would be eating gingerbread cookies, so I'd gone to Calorie King to see if I could figure out the carb count. But, it wasn't very helpful because it really depended on how big the cookie was. So, I had absolutely no idea how to count carbs for this cookie.

When we walked in the door, the teacher, Mrs. W, exclaimed "Hi there Riley!!" then she leaned over and whispered in my ear, "The gingerbread cookies came in a box. They are 14g of carbohydrates a piece." That was music to my ears. She was already looking out for my boy.

Riley thoroughly enjoyed himself and got to meet his classmates for the year.

I did just fine on Saturday. I was a little on edge, but I did OK most of the day.

Sunday is when things went really awry.

It all started going down hill at church, of all places. My pastor's wife gathered all the kids that are in school and read them a book called "The Kissing Hand". It is about a little raccoon going to school for the first time and he doesn't want to go. So, his mom tells him to open his hand and gives him a kiss in the palm. She tells him that anytime he feels scared or alone at school to press his hand to his cheek and it will be like getting a kiss from his mom. While she's reading a tear or two slipped down my cheek, but it wasn't too bad.

At the end of the book the little raccoon and his mom are standing in front of the school. The little raccoon turns to his mom, opens her hand, and kisses her palm too. The tears increased a little.

Then, our pastor prayed. And, as he prayed for God to watch over the children and keep them safe at school it's like a flood gate opened and the tears started to pour. I was holding back sobs. As soon as the prayer ended I quickly got up and went outside before Riley got back to his seat and saw me crying.

I stayed outside a few minutes and got myself straight. I felt so stupid for crying. I didn't cry when Holden started school. But, with Riley, I was terrified that something bad will happen. I kept having visions of him passing out at school and no one noticing.

We went to the beach after church and Riley had a great time. He was still very excited about starting school the next day.

Once we got home from the beach the reality of the next day set in. I became very quiet. I couldn't seem to keep a thought in my head. Riley went to bed (after a few tears). He's never had to go to bed early and he wasn't happy to be starting that.

I decided I should try to get some sleep. I knew I probably wouldn't sleep well, if at all, but I knew I might as well try. Once I got to bed I couldn't get the image out of my head of Riley checking his sugar at school on Friday. It was very painful for me to watch my child prick his finger while all the other kids were already devouring their cookies.

And, then, I cried like I haven't cried since he was diagnosed. I cried and I prayed. And, in between the two I talked to Michael, who, bless his heart, had to get up at 5:30 AM and probably just wanted his silly wife to be quiet so he could go to sleep.

At first, I talked about being scared that something bad would happen to Riley. But, I didn't linger there long. As I kept talking I realized what really was the matter.

I was mad, very mad, at diabetes. Michael said, "I just look at it this way, Riley is going to be a stronger person because of this." I've said that same thing before. But, last night, I wasn't having any of it.

I told Michael that that's just a nice way of saying someone has to go through a lot of crap. You only get stronger because of bad things, not good things. And, no mother wants anything bad to happen to her children.

I began to rant about how unfair it was that he had to check his sugar before he eats and how unfair it is that he's hooked to a machine 24/7, and the unfairness of having to sit out at PE or recess when his sugar is too low.

It sucks and it pissed me off. Instead of tears of pain, I cried hot tears of anger. I hated diabetes and everything that came along with it.

At around midnight I finally became tired and after checking Riley's sugar, I fell asleep. And, I slept pretty well. Other than the usual nighttime checks I slept all night.

This morning I went in to wake Riley. When he rolled over in bed I whispered, "Do you know what today is?"

With his eyes still closed and a huge grin on his face he said, "My first day of school."

He got up, had breakfast, brushed his teeth and was ready to go.

He walked into school with his head held high, not a bit of trepidation in his steps. He sat down at this desk and began to color the picture of a school bus that the teacher had put there.

We hadn't been there 2 minutes when he turned to me and said, "Aren't you going to leave now?" I told him I needed to speak to Mrs. W first and then I'd leave.

I went to speak to her one more time about checking Riley's sugars and getting Holden out of class to give his insulin. And, I gave her some juice boxes to use for lows.

Then, I stood back and watched my little boy color like he didn't have a care in the world. When I stepped closer Riley looked at me and said, "OK, now that you've talked to Mrs. W, are you going to leave?"

It was just his way of telling me that he was going to be fine.

And, I know that he is.

They are always there

Sometimes I have great days, days where diabetes is way back in the background of life. It's still there, it's just not center stage. There are days when I don't really think about diabetes all that much. There are days that even if I do think about it, I think "Oh, it's OK. Riley is going to be fine."

I really love those days.

But, then there are times, like today, that diabetes weighs heavily on my heart. It feels like the weight of it is dragging me down into an abyss that I can't escape.

There's a lot going on right now. Obviously, Riley starting school has me on edge. It forces me to think about the logistics of diabetes more than I really want to. I have to think about a plan for if Riley goes low a school. A plan for if Riley's set comes out at school. And, a plan for if, God forbid, Riley goes too low and has a seizure while at school. These are things I can usually keep tucked in the back of my mind. Bringing them to the forefront is quite painful.

Also, I am raising money for Walk of Hope. Raising money puts a strain on me because I have to think about diabetes and why it is so very important to find a cure.

When you convey to people why you want a cure it's not as simple as not wanting your child to be hooked to a medical device or wanting your child to be able to eat whatever he wants. There is so much more. This is a 24/7 disease. There are no holidays. There are no breaks, not even for one second.

There are worries that other parents will never have. There are worries that Riley will deal with that others will never have to experience.

There are the mornings, like this one, when I change Riley's set and he screams bloody murder and clings to me for comfort, a comfort that I just cannot give. I can't take away the sting of the needle anymore then I can take away this disease.

Of course, there's the complications looming over my head too. Riley's sugars have been pretty good lately. But, for the last two nights, he's run high all night long no matter how much we correct him. Last night he reached 403. We haven't seen the 400s in a while.

But, when he goes through those highs, even though I know we'll eventually get them straightened out, I can't help but have in the back of my mind what they are doing to his eyes, his kidneys, his heart.

Lately, I've been forced to think about things that I really don't want to think about, the bad things.

And, I've come to the realization that even on those good days when I don't think about the bad things, they are still there. Whether I think about them or not doesn't change the fact that they exist.

And, that is another reason why my heart is heavy this morning and, to some extent, always will be.

The meeting

The meeting went well. The teacher was very receptive and didn't seem to get uneasy until I started talking about Glucagon. I told her chances are that Riley will never have to use it, but I want her to know how to use it if the need arises.

I sat there and reviewed the book with her. She didn't have a lot of questions. But, when I mentioned that if he is low at recess that he needs to wait for his sugar to rise above 90 before playing, she said "Well, what if I get him to check his sugar before recess?" Ah, music to my ears. I told her that for the first few weeks until I get his insulin figured out it might not be a bad idea.

I'm ready, I think. I might as well be. Riley starts school on Monday and he will be in someone else's care. I can't change that. All I can do is focus on the positives.

He will be fine. My head knows that. I just have to convince my heart to get on board.

It will come. I know the first few weeks will be the most challenging. Once Riley gets in a routine and I get his insulin needs figured out things will be better.

I believe in angels and I know that my special little man must have and equally special angel. (Not to mention an awesome big brother that will be there with him too.)

I haven't cried yet. I don't know if I will.

I'm just going to take things one day at a time.

Jittery

School is almost here. In the words of Riley (said with a big grin on his face): "Mama, there's only 6 more days until school!!!" He is literally counting down the days. That helps to calm my nerves a little.

I have a meeting with Riley's teacher today. I can't stop thinking about it. I'm a little nervous and I'm not quite sure why.

I've made a little notebook for her to keep in the classroom. It has things like emergency numbers, how to count carbs, what to do about low and high blood sugars, things like that. I hope I don't overwhelm her.

But, I want her to know what to do. I've been working on the notebook more over the last few days. The last thing I put in there was how to give Glucagon.

That one threw me for a loop. I had to hold back the tears as I typed it, trying not to envision Riley lying on the floor while his teacher stabbed him with a needle. He's never had to use Glucagon before and I know it's unlikely that he'll need it at school. But, it's possible. And, it terrifies me.

I told my mom this morning, it's the lows that scare me. Riley can usually tell when he's low. But, yesterday he was 57 when my mom checked him for snack and Riley didn't feel a thing. He had several lows yesterday that seemed to come out of nowhere.

So, I'll let you guys know how the meeting goes. I just hope I don't cry. I don't think I will, but my nerves are so on edge I don't know what I'll do.

Wish me luck.

Out of the mouths of babes

I'm feeling a little better about Riley going to school. I'm doing well enough that I don't feel like dissolving into a puddle of tears anytime someone mentions school.

It happened yesterday. My parents have gone away on vacation. So, my babysitter is gone. Usually, in the summertime this wouldn't be a problem. But, Michael works off and on installing pools during the summer. And, the guy he works for needed him to work this week. I went back to work yesterday too, so this left us in a dilemma.

Michael called me at 9 o'clock yesterday morning. He said the guy he works for needed him ASAP. I was already at work. Holden was home. Michael decided to get Holden to watch Riley for a couple of hours until I could rearrange my schedule and pick him up.

Holden called me at 11:00 to report Riley's blood sugar (300; we're having problems lately getting that first sugar after breakfast down to an acceptable range) Anyway, Holden gave Riley insulin.

I told Holden I would come get Riley soon. He said there was no need to. "Mom, I'm going to be doing this on my own at school soon enough. You might as well let me start now."

And, that's what he did. Holden kept Riley all day. He checked sugars, counted carbs, and gave insulin like a pro.

And, now, I'm breathing a little easier. I'm not 100% OK, but I'm getting there. Holden will be at the same school as Riley. He's lived with this disease just as long as I have. He knows what to do and if he doesn't I'm just a phone call away.

Holden had to go to work too today. So, Michael took Riley to work with him this morning and I picked him up and he stayed at the office with me in the afternoon.

After I picked him up I was driving the 15 minutes back to work. He asked to see my clipboard. I use it at work to jot down notes about patients.

I handed him the board and heard him flipping through pages. Then I heard this little conversation:

"Let's see. You're here today because your son has diabetes. Is that right? So, you've brought him in for a cure?"

"Ma'am does he have Type 1 or Type 2? Excuse me. Ma'am is he Type 1 or Type 2?"

"Type 1? OK. So, all you have to do is log on and type in the password and then he'll be cured. The password is R-I-L-E-Y. Did you get that? It's R-I-L-E-Y."

"Just type that in and he'll be cured and he can eat and drink whatever he wants."

I hear that and my mama bear claws come out. I want to rip diabetes to shreds. I want to fight until I'm so exhausted I can't go on anymore. I want to see that day when my son really, really can eat whatever he wants. Not just in theory, but for real.

It's what he wants. It's my job to make it happen.

If you haven't donated to Walk of Hope, please take the time to do that now. Just click on the link at the top of my sidebar.

Thanks.

Back to Work

I went back to work today. That first day back from vacation is the worst.

But, I'm here and I have so much to write about. Yet, I can't bring myself to write. I want to, I really do.

School starts in 2 weeks. That's the main thing. But, I can't write about that now. Because, in order to write about it, I would have to think about it, and I just do not want to think about it.

I don't have my head in the sand. I'm doing what I have to. I'm getting a notebook together for the teacher. I'm doing what I can to prepare Riley for school. But, I haven't mentally prepared myself for it yet.

Every time I think about it a panic rises in my chest. I quickly think of something else just to make that sense of utter dread disappear.

In short, I'm not doing well with Riley starting school. Any prayers and well wishes are greatly appreciated.

And, one day, before school starts, I'll sit down and write about my emotions. But, not now. There's too much to do. And, I just don't have time for a breakdown.

We're Home

We left Sunday and got back late yesterday afternoon. We went on a mission trip to Myrtle Beach, SC. We had a wonderful time. Here are a few pictures from our trip.


This is the group from our church who went on the trip.

The first mission activity we participated in was passing out free lemonade on the beach.

This is my mom passing out the cups of lemonade.

Riley caught a ride back to the hotel in the wagon.

Why? Because in the middle of passing out lemonade he went down to 64. I made him drink Gatorade and eat snack all while he kept on passing out lemonade. But, I did make him ride back instead of walk. His sugar came up accordingly and did just fine after that.

Next, we visited a Boys and Girls club.

Holden shared a Bible story with the kids. He spoke about David and Goliath. He told of how young David was when he defeated Goliath. He told the kids that even though they were young they could still do great things with the help of Christ.

We also did crafts with the kids and played games with them.

Riley made a friend.

Holden had one particular kid who stole his heart and followed him every step he took.

We also visited a men's homeless shelter where we sang and shared a sermon.

And, a local nursing home. There we sang hymns and played Bingo with the residents.

We also had worship every night back at the hotel.

This is Josh, the summer missionary.

Holden participated in the talent contest where he juggled and showed off his basketball skills.

Josh showed off his skills too.


We also had some down time.

We went swimming at the pool and the ocean.

Riley's pump fared just fine in the salt water. We rinsed it and his site off with water as soon as he got out so the salt wouldn't accumulate on it.


We had a wonderful time at the water park.

We just toted Riley's machine around with us the whole time. When we got on a ride or in the water we left his machine with our shoes. No one ever bothered it. We kept fruit snacks in the machine, but also in a zip lock bag in a Velcro pocket Riley had on his bathing suit.

He never went too low. He got down to 101 once and I gave him a few fruit snacks and he did just fine. He never went high while we were there either.

And, as far as his site goes, I covered it with IV 3000. I cut a hole in it for the set to stick out. As you can see, he spent a lot of time in the water and he never lost a site.

Now, we're home and we are tired. But, it's a good tired.

But, vacation is not over yet. There will be more to come.

The stupid monster

We will be leaving on Sunday to go on a mission trip to Myrtle Beach, SC. While we are there we will be spending a day at a water park.



Riley loves water parks. He loves the slides and the lazy rivers and the wave pools. He'll spend the better part of the day in the water.



Our other trips to water parks were before the ugly monster named diabetes entered out lives. That stupid monster has a way of complicating things.



So, I have some questions for my invisible internet friends out there. Have any of you been to water parks and how did you handle your diabetes while you were there?



I was corresponding with another mom of a child with diabetes today (Hi Becky!) and she was saying that when they went to a water park they left his bag at the first aide station with his meter and juice in it.



What to do with the pump is not a big deal. He swims and bathes with his pump on. So, we'll just keep it on like usual.



But, I have been stressing over his sites. I'm worried that with his pump site staying wet the whole day the site will come out. I really, really do not want to do a site change in the middle of the water park. We use IV prep before putting his sites on. He's only had one site come out due to swimming and he swims pretty much every week. But, he's never in the water more than a few hours at a time.



Now, I'm stressing about what to do with his meter and his fruit snacks for lows. I don't want to leave them somewhere on the other side of the park and have him go low and me not have anything with me.



I know I could buy a very cool fanny pack;-) Then, I'd have everything with me, but what do I do with it when we get on the slides or get in the pool? Should I just leave it in the little receptacles they have there and hope it doesn't get stolen?



So, how do I keep the stupid monster from ruining our time at the water park? Any tips you have would be greatly appreciated.