I'm not the only one

Today after church Morgan and I went to a local burger place to pick up lunch. As we were standing in line taking in all of the people I noticed a little boy about 7 years old sitting at a table with the ever familiar little black pouch, testing his blood sugar. I think that this is the first time in 3 1/2 years that I have seen another child checking their blood sugar. I told Morgan "Look, look" His smile was wide. I told him he should go up and talk to him. Morgan was actually pretty nervous. He wanted to, but didn't know how to approach the boy. I gave him some suggestions but ultimately Morgan went out to the car, got his meter and came in and checked his own blood sugar. I told him he should go up and say something like "Hi, I saw you checking your blood sugar, I check mine too". Well he did just that. The boys mom asked about Morgan's pump and other stuff, but in the end thanked Morgan for coming up and saying hi. Her son had said 'I'm not the only one' and it really made her day.

I know as a parent sometimes I feel alone in this, especially in the early "daze" but I took comfort in knowing that I was not the only parent up at 2 or 3 in the morning checking blood sugars. Counting down 5..4..3..2..1...praying that the meter would give me a good number so I would not have to treat a low, only to have to check again in 15 minutes and again in 15. Places like TuDiabetes, Children with Diabetes and my wonderful sister-in-law who helped out in the beginning and even now 3 1/2 years into diagnosis. It can feel like 'we are the only ones' but we are never really alone.

"Take Your Medicine Before Practice....

So it doesn't interrupt our practice."

Now why the hell didn't I think of that? I usually don't have to deal with stupid, stupid comments from ignorant people, but this comment is from someone who is going to be Morgan's basketball coach.

Basketball tryouts started this past Monday. Morgan came out of it with a glucose of over 400. Not good. He can't function well when over 250 and it showed. When I got there to pick him up he was uncoordinated, breathing hard and just didn't look well. I spoke with the head coach, who has known Morgan since 1st grade and is completely on board with Morgan's diabetes. He wants Morgan safe and wants to know what he needs to do to keep him healthy. Basically, it came down to Morgan being uncomfortable taking care of his diabetes in this new 'high school' arena. He wants to participate 'just like everyone else', not be singled out for being different. His blood sugar had been 95, so he downed a ton of carbs and went back to work. With the adrenaline and carbs, he sky-rocketed to a very unhealthy number.

Pat and I decided that until EVERYONE (Morgan, Coaches, Parents) was comfortable dealing with diabetes, I would just attend tryouts this week and help Morgan manage his blood sugars. This way, he could focus on basketball, I could keep an eye on him for signs of hi's or low's, and he could gain the confidence to walk off the court to take his blood sugar and treat it as necessary. Tuesday and Wednesday were great, he stayed below 250, took insulin as needed and checked his blood sugar about every 45-60 minutes. No problem. Until last night.

Morgan had forgotten his ankle braces so I ran home and got them for him, so he was late getting on the court. A little into practice another coach (Coach B) told Morgan that Coach M wanted to talk to him....in the stairwell. I figured he was being scolded for being late and didn't think anything of it. But over the course of tryouts, I had to call Morgan off the court to have him check his blood sugar. He was 135, too low for comfort, but he ate a little and had some Gatorade, they were just going to be shooting and not running. Well, he did end up running and he would not come off the court when I tried to get his attention. When I did, he was 106, shaking and pretty emotional. I could not figure out why he was so upset. I told him that I was there, I wasn't going to let anything happen, he was okay, just sit out and lets get his blood sugar up. That's when he told me about the stairwell....

Apparently, Coach M told Morgan in the stairwell that he "needs to take his medicine before practice so it doesn't interrupt"! I could have committed homicide or at the very least ripped the skin from that man's back. I spoke with the head coach, told him what was said. He was furious. He said that there is no room for that kind of prejudice and ignorance on his staff and he would take care of it.

This man has no idea of what he has done. Morgan was just starting to feel like he could take care of himself without having to worry about what the coaches would think. Unfortunately, ignorant people say stupid things and have no clue what it is like to deal with this 24/7. I wish we could just deal with it for an hour in the morning and forget about it until tomorrow. Life would definitely be much easier. I don't know what is going to happen. I think an apology to Morgan is in order. AND a very lengthy coarse in diabetes education.

And so it begins

For the last week or so we have had a wonderful break.  Morgan has not had Cross Country and therefore I have not had to worry too much about his blood sugars.  I did take this week to really hunker down and make adjustments and take more care in his carb counts, i.e. weighing his breakfast, writing carb counts on his lunches.  And the results?  Amazing numbers, at least for this week.  He started open gym for basketball last night, which means a lower basal rate over night, which typically relates to a higher wake up number....until I get it figured out again.  But not before basketball officially starts next Monday.

On a lighter note....this is what I woke up to this morning.  I guess it is time to break out the snow tires. 

Kitchen Remodel and Anniversary

I guess you could say that we are officially finished.  Though I need to put up the backsplash and we are going to tile the front entry.  Hopefully, these things should get done before the end of the year.

In addition to the kitchen, we put new flooring in the dining room and took about 8 inches off the front entry wall.  We can now see from the kitchen into the front room.

The laundry closet that we removed is now a peninsula/bar that is 9.5 feet long.  The sink and dishwasher are also here.

Looking toward the dining room from the computer area.

Island area.

The new laundry room, where the old kitchen used to be.

We are very happy with the way it turned out.  It is so much more functional and I love cooking again.  Pat has already planned a couple of parties and after Oregon States whipping of USC, we are looking forward to our annual Civil War Party.

We also had an anniversary of sorts this past week.  9/25 was Morgan's diagnosis date.  3 years.  Obviously I have mixed emotions.  100 years ago he wouldn't be here, but we would all rather that there was a cure.  The past couple of weeks has been difficult trying to get his glucose back in range.  Must be another growth spurt on its way because his insulin needs have almost doubled again, even with running cross country.

Imagine Mercy

We traveled over the hill with a friend for a concert last night, to watch couple of my favorite christian bands: Mercy Me & Casting Crowns. I can barely listen to either one of these groups without tears. Their music always touches my heart and it did last night. As we were waiting for MM I saw a man standing back stage (we were in the 2nd row) and immediately noticed his T-Shirt: Black with a white hand print, red dot on a finger. I instantly knew what that was about and was set on trying to find out more i.e. trying to read the fine print. When the band came out, it was the drummer for MM who was wearing the shirt! As the set progressed I learned more. Bart Millard, who is the lead singer, shared that his son was diagnosed with Type 1 diabetes when he was 2 year old, Sam is now 5 so he was diagnosed about the same time Morgan was. Bart then started the Imagine a Cure Organization. That was the T-shirt I spotted. I am now on a mission to get my hands on a few.

So not only were the tears flowing from the beauty of their songs, but now also for another family who has to bear the struggles of this life-long disease. A sense of connection with another parent who has been where I have been: sleepless nights, constant worrying. I don't let myself get wrapped up in the pity party of diabetes and Morgan doesn't either. It is, what it is and I can't do anything about it, if I could, I would have. God has a greater purpose and maybe some day he will let us know what that purpose is. But in the meantime we just allow God's glory to shine through and give him the praise in both good times and bad.

Raise Your Voice

Today is Type 1 Diabetes Awareness Day. I asked Morgan to guest post for me today. To write something about living with diabetes. This is what he wrote.

Living With Diabetes

Its when I first wake up, I always have to remind myself to check my blood sugar not knowing what it will be. Trying to guess what it will be with how I feel. For breakfast I usually always eat cereal pouring the same amount every morning memorizing the carbs. During breakfast I count the days since the last time I changed my site and arguing with myself if I should change it or go for another day which will turn into two.

School with my diabetes is really nothing until I have been high for a very long period of time and haven’t come down, and reminding myself to check my blood sugar so I can give insulin so I don’t feel so crummy. But one of the main things that I always seem to forget is to check my blood sugar before a test that way I can see what I score with a normal blood sugar or a high one. One thing I love about my friends is that they get involved with my diabetes, everyday at lunch when I check my blood sugar my friends crowd around my meter seeing what I am. And I always hear the same questions everyday… “Is that good?”, “Wow, that’s HIGH!”, or my favorite one, “Oh, your too high to be eating that cookie let me eat it for you”. One class in school that is a little tough with my diabetes that isn’t lunch. It’s FACS or Home Ec. A few things that is hard about it is that it is right after lunch and we cook things that are sooo good (because of the sugar). For example: I could have been high at lunch and given a huge bolus and bam be normal in FACS with a bunch of insulin on board and we are eating something high in carbs. Sports at the moment I am doing track, but I also play basketball and that could mean no insulin given during an AAU tournament, yet, lots of eating. Track I find a lot easier because of the time between each event, and basketball being a starter can be somewhat more difficult for me and my mom. Now let me tell you what my mom does for me.

Now if it weren’t for my mom nagging me to check my blood sugar every second and going outside to play I would be very sick not saying my dad does nothing he does but just keep reading). I think I would have the worst A1C ever, if it weren’t for her. She works my basal and checks me in the middle of the night when she has had a crappy day. And now that I am writing this paper (which my mom pushed me to write ) I see how important she is and yeah I might press buttons on my pump to give insulin to keep me alive, but who is figuring out those ratios, and helping me stay alive and encouraging me to keep going even when she is frustrated. So everything that I have written about diabetes affecting my life yeah that is true. But now I see what has really affected my life…my mom and how much she wants to get involved. But if I didn’t have my mom I would still have my dad to help me out, but it just wouldn’t be the same. So thanks mom for all of your help. And all of you Diabetics out there even if you are out of the house, find someone that encouraged you through those tough times keeping your blood sugars steady. And also for you non-diabetics if you know a diabetic if they need help, help them out either praying for them or just telling them that you are there for them.

By;
Morgan
P.S.
I have finally decided, with the help of this paper, that I am NOT moving out of the house =].

Do I have a great kid or what? I was going to write something as well. What it is like to be the parent of a type 1. I think I will wait for another day.

Round 2

I have been layed out again with another rotten cold only this time had laryngitis for about 7 days and couldn't get any work done.  I am feeling better and finally caught up so I can do some blog posting!

Dealing with Morgan's diabetes and basketball has always been a 'trial-by-fire' thing.  We do what we know how to do, (control carbs, give insulin and pray) and hope that everything works out okay.  During the previous 3 tournaments we would watch his blood sugars sky-rocket into the 300 and 400's.  This was primarily due to being early morning games, 8AM and having eaten breakfast less than an hour before.  Adrenaline also causes his blood sugars to climb.  So the combination of the 2 was a sure fire way to end up playing basketball with high blood sugars.

At this last tournament, I asked Morgan if he could try to keep his morning carb intake to 50 grams.  You would have thought I asked him to chew off his left hand!  I tried to explain to him my reasoning and he agreed to give it a try.  so he limited his breakfast to fruit, potato's, and protein.

About 20 minutes before the start of his game, one of the other moms tell me that Morgan blood sugar is low!  WHAT?!?!?  When I ask him he was 59!  Go figure!  We finally got him up to a safe level, 130's I think, but he didn't start.  I told him that he was good to go, but he was still very wary.  

When he did go in, his mind was just not on the game.  He had passes hit him square in the chest that he missed, not 1 but 3.  It wasn't until halftime and his glucose over 200 that he finally became comfortable enough to play the game. 

Just when I think we have it all figured out, Diabetes shows me that it can still kick me in the pants!

When I Move Out

It has been nearly 28 months since Morgan's diagnosis of diabetes.

I will not even begin to count the number of finger sticks he has had in order to check his blood sugar levels. I will not even begin to count the number of injections/infusion sets he has had in the past 28 months.

I could probably count the number of times he has forgotten to check his blood sugar before he ate or I could count the number of times he has forgotten to bolus for something he ate 1-2 hours earlier.

I feel like Nagging Nellie when I remind him to check his blood sugar, or the ever present question in the morning, on the way to school "Did you bolus for your breakfast?" Or the question asked everyday after school "How were your numbers today?"

He has never asked me to back off, or told me "Mom I can handle this." I program his pump; all of the basal rates, insulin to carb ratios, insulin sensitivities....everything. But, I always pull him in and tell him what I did and why. I still check his blood sugar in the middle of the night, when I feel the need. It is only a couple of times a month now, nothing like it was early in diagnosis when sleep was something I only vaguely knew.

The past 6-7 months have probably been the most difficult for me to deal with regarding diabetes and I don't really know why. His blood sugar levels are actually pretty easily managed, thanks to the "spot on" rates I have programmed in to the ever present Minimed 722. We are in the full throws of puberty, but his last A1c was 7.0% so we are doing a great job of maintaining.

It could be that MY own honeymoon with diabetes has worn off. I don't research the net as much as I did before, looking for ways to handle post basketball highs and lows....I know how to handle them. I am not researching insulin pumps...He loves MM722. I am not reading up on Section 504.... been there, done that, have one. CGMS?...he doesn't want any part of that.

I am not a newbie anymore.

What I have been doing is reading about people who live with this, day-in and day-out. Reading about their daily struggles and triumphs; coming to the realization that this is for real, this is for life, this is forever. I always try to maintain a positive attitude regarding diabetes, especially in front of Morgan. Getting down about isn't going to help him one bit and I don't want him to adopt a 'poor me' attitude.

In reading the many blogs and forums, I have found many wonderful people from the diabetes online community (D-OC). People like my wonderful SIL who have helped me muddle through the first year of the diagnosis fog, those who unknowingly helped me thrive, grow and become more confident in the second year and who I am sure will also unknowingly help guide me through the teen years of dealing with diabetes and beyond! Thank you!

I asked Morgan a while back "When do you want me to hand this diabetes stuff over to you? When do you want me to back off?"

His response: "When I move out."

I know even when he does move out, I will never be free of worrying about diabetes because neither will he and maybe that is why it has been so difficult.

Diabetes365

About 3 weeks ago I joined a group called Diabetes365. This is a group of people living with diabetes who have committed to take 1 picture a day for the next year. We are committed to bringing awareness to diabetes and what it is like living with it.

You can see the group pictures here.

My pictures are under 'Crebcycle'.

56, 58, 60....

just a couple of Morgan's blood sugar readings from last night/early this morning.


You see, his numbers have been awesome this week. Hardly any highs, maybe 1 or 2 lows.

I knew to be on the lookout. Numbers like the ones he has been having usually come at a price.

He went to bed with a blood sugar of 109 mg/dL after having 'dessert' but with about 4 units of insulin still coursing through his system, so I knew that we would need to check him in a couple of hours.

When Pat came to bed at 11:30 (2 hours later) he checked Morgan and was clocked in at 56. We give him 4 glucose tabs.

A re-check at 11:45 shows a whopping...58. I give him 4 glucose tabs and found another one in his sheets....he only got 3 the first treatment.

12:00 AM check....60....4 glucose tabs.....I really hope this ends soon and without the help of glucagon. Turn down the basal rate on his pump to about 50%.

12:15....54... O.M.G.... I really am praying at this point.
4 more glucose tabs and a sip of milk....his mouth has got to be like chalk dust. I'm not sure how much more sugar he can eat and am seriously considering giving him a little glucagon.

12:30...94....FINALLY....1 cup of milk and 2 peanut butter crackers.

Final count: 15 glucose tablets.. or about 60 grams of glucose. YUCK.

He woke up this morning with a blood sugar of 178, which is really quite impressive since he had 50% of his basal insulin all night long and there really wasn't a 'rebound' from his overnight low.

In the mornings, I always check his blood sugar and bolus for him. He always eats the same amount of carbs so I can get away with this and it kills 2 birds with one stone: 1) I can pre-bolus him to help with his breakfast spike and 2) it actually forces him to get out of bed!

So, this morning after I checked his glucose I was greeted with a much needed hug and a "you are the best Mom, thanks for taking care of me, I love you!"

Diabetes is that way. Keeps us guessing and on our toes.

Note to self: buy more glucose tablets and make sure glucagon is up-to-date.