All In Due Time

Four years ago I was at the worst point in my life ever. My 3 year old son had been diagnosed with Type 1 diabetes just 3 weeks prior. My days consisted of clock-watching and finger-poking. I never slept through the night. I would sit and stare at the numbers in Riley's log book for hours trying to figure out what to do about them. I would lock myself in the bathroom and cry and then sneak in Riley's room at night while he was sleeping and pray and cry some more.



I was miserable. I was inconsolable. My son had an incurable disease and I was helpless to do anything about it. I felt guilty. I felt guilty because I felt it was my fault he was going through all of this. I felt guilty because when he looked at me with his tear-filled I eyes I couldn't do anything but cry myself. I felt guilty because I didn't see it coming, didn't take him to the doctor sooner.



I couldn't think of anything but diabetes. My whole day revolved around carb counting and insulin dosing. I scoured the Internet and read everything I could about Type 1 diabetes. I read medical articles as well as postings from other moms of kids with T1.



I tried my hardest to put on a brave face for everyone, especially Riley. I did not want him to see the pain in my eyes. I refused to let him see me cry. I didn't want anyone in my family to see my struggles. I felt so weak. I knew I needed to suck it up and move on, to find happiness again, but I just didn't know how.



Five months into Riley's diagnosis he was placed on a pump. Those first 2-3 months after that were hell. I often wondered what we'd gotten ourselves into. But, after those first few months I fell in love with his pump. Still, it took me a while to get out of the MDI mentality, to figure out that Riley didn't need to be on a schedule. It took me a while to learn to decrease or increase the basal for certain situations. It took me a while to not cringe when I saw the tubing sticking out of the waistband of his pants.



Then, in October 2006, Riley's one year anniversary came and went. Those days leading up to it were heart-wrenching. I relived the pain of his diagnosis all over again. I was still grieving for my son on an almost daily basis. I didn't cry every day, but there wasn't a day that went by that I didn't think, "Why my son? Why does he have to go through this?"



Fast forward 3 years; fast forward through starting Kindergarten, the flu, numerous ear and sinus infections, birthday parties, starting sports, learning to check his own sugar and do his own insulin, explaining to others over and over again what type 1 diabetes is, knowing you have to live it to really understand.



There were more tears. But, the interval between the tears got longer and longer. The "whys" got less and less frequent and now that has stopped all together. The why just does not matter anymore. Tears, while I'm sure they are not gone for good, have slowed down to maybe a couple of episodes a year.



I hate to admit it, but I used to look at Riley and all I could think of were the things he couldn't do, how unfair life was. Now, those thoughts never cross my mind. There isn't anything he can't do. Some things may be harder for him, but life is like that in one way or another for everyone.



Fast forward 3 years and that brings you to where I am right now.



I hardly ever think of diabetes during the day any more, other than when I have to think of it. I still log sugars. I still pour over them from time to time. I spent about an hour last night analyzing sugars and figuring out what to do about them. Riley has been having a lot of lows lately. I made a carb change as well as a tiny basal change. Now, I have to wait and see if that helps. I still get occasional calls from school about Riley's sugar that forces me to think about it.



I remember early on in Riley's diagnosis wondering how on earth some of the moms whose blogs I read could be so happy. How could they just go on with their life like diabetes didn't bother them? I could not fathom ever getting to that point.



But, here I am right there. I now realize that diabetes did still bother those parents, they had just learned how to deal with it. It took me longer than some parents to get here. And, I know some parents who have children who were diagnosed before mine that haven't quite reached that point yet. We all have our processes we have to go through.

4 Years In

• 14,600 finger pokes
  



• 910 shots of insulin

• 426 site changes

• 3 blood draws
  



• 1 very happy, healthy little boy who I love more than life itself

I want it so badly I can taste it

We met Dr. Benjamin, Riley’s new endo, last week. I was a little wary about the visit. We absolutely adored Dr. Morris and I knew there was no way we would find anyone else like her. I told Michael on the way to the appointment that as long as the doctor didn’t say we tested too much or that we shouldn’t test sugars in the middle of the night, then I’d be OK.

The first thing the doctor said, after introducing himself, was how awesome Dr. Morris was and that he actually trained under her when he first started. Then, he said how his philosophy was much like hers in that he was there to help us fit diabetes into Riley’s life and not Riley’s life into diabetes. That’s when I knew we’d be just fine.

All in all it was a very pleasant visit. Even though I thought Riley’s A1C would be decent I am always on pins and needles waiting for the result. After Dr. B gave his little spiel he said, “Riley’s A1C is awesome, by the way. Is it always in that range?”

“What range is that?”

“Well, it’s 7.2 today.”

(Yay!!!) I told him it was hovering around there for a while, but due to a bad school year last year we’d gotten up in the 7.8-7.9 range and worked hard to get it back down, with the last one being 7.4.

Dr. B then said that his goal for kids Riley’s age was 7.5, so he was very pleased with the 7.2.

Riley’s sugars have really been doing well lately. Of course, diabetes still lets me know who the boss is every now and then, but for the most part, everything has been going well.

I just opened up an email with an attachment of the newsletter from Riley’s school. There was an announcement in it about Walk of Hope which will be held on October 7 to raise money for a cure for Type 1 diabetes. (All proceeds will go to Dr. Faustman’s awesome research going on at Mass General Hospital. Please go here to make a donation. If you do, please comment or email me and let me know. I’d love to add the total to the amount raised at the walk.)

As I read it my eyes filled up with tears and started to spill over onto my cheeks. It caught me completely off guard. It came out of nowhere.

Well, not out of nowhere, I guess. It came out of almost 4 whole years of worry, blood sugar tests, needles, highs, lows, carb counting, praying, crying….

Riley’s 4 year anniversary of his diagnosis is coming up on Tuesday. I don’t know why it gets to me every year, but it does.

October 6, 2005 will always be imprinted in my memory. It is the thought of that day, and knowing that right now, other parents (and their kids) are having a day just like that of their very own, that make me want a cure so badly I can taste it.

I used to be so sure that one day I would taste it for real. Now, I’m not so sure, but I’m not going to stop trying to make it happen. I will fight for a cure, until my very last breath. It’s the least I can do for Riley. I said this several years ago and I still mean it: I fight for a cure, because I don’t want Riley to ask me one day why I never tried to fix it. I want to be able to tell him that I tried my very best.

Although, in the back of my mind, I fear that my best is not good enough.

Pumped Up

Riley's pump finally arrived around 5:00 yesterday afternoon. I was like a kid a Christmas when it arrived.

And bonus: He was using an Animas 1250, but they sent a 2020. It has a color screen and it's really neat. I also like that you can pick the time that you want to change carb coverage and target BGs. On the 1250 you could only adjust at them at the times already preset by Animas.

Off to meet the new endo today. I'll let you know how it goes.

Look Ma, No Pump!

Around 2:00 Saturday morning, Riley's pump alarmed that there was 10 units or less of insulin left in his cartridge. Michael silenced the alarm and went back to bed. I was due to change his needle at breakfast anyway.

So, when his pump alarmed again at around 7:30, I didn't think much of it. Michael went to silence it again and I heard: "Penny, the pump screen is blank!"

My heart sank and I got a bad feeling in the pit of my stomach. I jumped up out of bed. I pushed every button I could on his pump. The back light would come on and the pump would beep appropriately when I locked and unlocked it, but I could not get anything to show up on the screen.

I called Animas and while I was waiting for someone to call back I changed the battery. I was really hoping that would work, but alas it did not. That's when I knew that it was bad.

I spoke to the very nice Animas lady and I was on the phone for less than a minute before she was taking down my address to send a new pump. Since it was Saturday the pump would not arrive until Monday. I guess she could hear the sound of defeat in my voice. She was very sympathetic to my plight. She asked if I had the pump settings written down somewhere and when I said yes she said, "Good job, Mom." That's when I wanted to ask her if she wanted to go explain to my 7 year old that he had to go back to injections for two days. My stomach hurt just thinking about it.

It had been at least 3 years since Riley had received an injection of insulin. But, just like everything else having to do with diabetes, he took it like a champ. He said he was hungry and wanted breakfast. I sat him down and explained to him that his pump was broken and he'd have to take a shot with breakfast. He shrugged his shoulders and said "OK". I really need to take some lessons from him.

Right now we're between endos. Well, not really between endos. We have one, we've just never met him. Riley's beloved Dr. Morris, who is the best pediatric endocrinologist in the world, had to close her practice in June, due to health problems. She recommended a doctor to us. Since we had been seen by her in June, I made the appointment for September.

When I made the appointment I spoke with the nurse (who, I learned, is Dr. Morris' best friend. Thanks for looking out for us Dr. M.) and she gave me the emergency number to call with problems. I dialed it and was immediately connected to some doctor I've never spoken to before. She said, "Oh, it's simple, you just take his basal and shave 10-15% off and that's how much Lantus he takes."

Sorry, doc, there is nothing simple about it. Since Riley's total basal is 8.40 units, she told me to give him 7 units of Lantus. Also, she was going to call in a prescription for new Lantus. The Lantus I had in the fridge had an expiration date of this month, but had been in my fridge (unopened) for a year and a half. I would rather be safe than sorry. I also had her order some more syringes for us.

Not to go into too much detail, but as of late my life has been very stressful even if you take diabetes out of the equation. My mom is still sick, with no real answers as to what is going on. Work is horrible, I was switched to being the school nurse at the high school with no warning at all and I've hated every minute of it.

Then, Riley's pump decided it needed a vacation. I went to the pharmacy and the doctor had not called in the prescription. The pharmacists ended up having to call her and get the info. All the time, I'm waiting and envisioning Riley's sugar rising as he had no basal insulin floating around.

I finally got home and gave him the Lantus. He screamed and said it hurt. Since then, I've had to chase him a few times to give him his NovoLog also. He's skipped snack a couple of times too, only because he knew if he ate he'd have to take a shot.

I will be so happy when his pump arrives later today. I'm sure the first thing I'll do is take it out of the box and hug it and kiss it.

I've always loved the pump, but these past few days have made me love it even more. I will go to help Riley take off his pants to get in the shower and fish around for the pump for a few seconds before I realize he doesn't have one on. When his sugar is low, I'll go to see how much insulin he has on board, only to realize that figuring that out is up to me.

Or, he was getting low in the middle of the night, and I went to tell Michael to decrease his basal and then realized you can't do that with Lantus. Or, he'll run around and around and I'll think "maybe I should decrease his basal".

Math has never been my strong suit. I've given all the injections, but Michael has been the one computing to determine how much insulin to give.

Yes, I've had a miserable weekend. Technology is wonderful. When the man in brown shows up at the door, I might even kiss him too.

Diabetes Is Expensive

We all know how much it costs to effectively manage diabetes properly. There are the sugars machines (which I have yet to have to pay for) and the strips. The strips are where they really stick it to you. “Here have a FREE machine. Now, all you have to do is pay around $50 a bottle for strips so you can actually use the machine.”

Then, for those on a pump there are the pump supplies. Or, if you’re on MDI you have to buy syringes. Then, there’s insulin, two kinds if you use MDI.

But, that’s not the expense I’m talking about today. I will save my decline of health care/ insurance rant for another day.

Today I am talking about the expense of a cellular phone. To those parents out there with kids with D, your cell phone is your lifeline. It is how you are able to be a pancreas while being miles and miles away from your child. You are able to talk to teachers and nurses or your child and tell them what to do. You are able to be reached at anytime if needed for an emergency site change. My cell phone is like my security blanket.

A couple of posts ago I wrote that I had to switch schools with no notice. To say that I live in a rural area is putting it mildly. Because I’m in such a rural area cell phone coverage can be spotty at times. It has gotten better over the last couple of years and now 99.9% of the time I can be reached by cell phone.

Except now. The school where I have been reassigned is in an area where I do not have any cell service. To say this stresses me out would be an understatement. I have a phone in my office, but what good school nurse sits in her office at all times. Also, I don’t have a private line. All calls have to go through the front desk. The front desk line is very often busy.

If you remember, Riley was supposed to call me at every sugar check for instructions on what to do. Well, after the first few days, that plan had to go. His teacher kept getting a busy signal every time she tried to call me. A few days into the school year I drove all over creation to find a place that still sold beepers. I figured his teacher could page me and I could call her back on the school’s phone.

I showed up at work that first day and realized about 10 minutes after Riley was supposed to check his sugar that I still hadn’t received my page. I called his teacher who had tried calling Michael when she couldn’t get me and then ended up calling my mom. She had paged me several times and I never called back. I quickly paged myself and found out that the pager did not pick up inside the school building. I called the pager company and they said that happened sometimes and there is nothing that can really be done about it.

I had noticed other staff members talking on their cells at lunch. I found out they use a different cell company than I do. I can’t really switch cell companies since I’m under contract. So, I contacted the other cell company today to ask about a pay as you go plan.

They have a plan where I will have to pay an activation fee and a monthly fee and then so much per minute for every minute that I use the phone. So, after work today I’m going there and sign up for yet another cell phone with a different company.

Thankfully, the beeper was not expensive and I did not have to sign a contract. Hopefully, the new cell phone won’t end up costing too much a month. It should only be used if his teacher needs me. She’s doing just fine with lunch and snack on her own. She has been told to call for any sugar less than 80 and over 300. And, anytime he has to check his sugar when it is not snack or lunch (including before PE). Hopefully, I won’t use too many minutes a month since I’ll still have my regular cell for other calls. It’s the activation fee that gets to me.

But, it’s all worth it to make sure Riley is OK. It not only helps me, but I think it stresses his teacher out not to have me readily available when she needs me.

Labor Day Meme

It's labor day and it's raining and I'm bored. Feel free to do this if you'd like...


How long were your labors?

Holden: Started first contraction at 6 AM and delivered him at 8:42 PM= 14 hours and 42 minutes

Riley: Started first contraction at 9 PM and delivered him at 12:18 PM the next day = 15 hours and 18 minutes

How did you know you were in labor?

The pain and tightening in my abdomen were dead give aways.

Where did you deliver?

A hospital in Eastern NC. I had both of them at the same hospital.

Drugs?

Holden: No, because I was young and stupid and didn't want my baby to get any drugs in his system.

Riley: Yes, because I was older and more tired and knew how much labor hurt. I had an epidural with him, but went through some pretty intense labor for several hours beforehand.

C-section?

No, for either.

Who delivered?

Holden: Dr. Sandy (Aka: Dr. Easley)

Riley: Dr. Stephenson

(And a bonus question) How long were you pregnant?

Holden: 39 weeks and 5 days. He was due on February 7th and born on February 5th.

Riley: 40 weeks and 1 day. He was due on May 12th (Mother's Day) and was born on May 13th.