Second Checkup

Sam had his second checkup yesterday.
He's put almost 5 pounds back onto his 4 year old frame, which doesn't sound like much, but is actually 16% of his total body weight.
His average blood sugar level taken over a period of 6 months, in this case was 180. That was lower than the high 200s that he showed at our first appointment, before the official diagnosis.
We were told that an insulin pump will run us about $5500. So we are taking donations. :)
We met with both his doctor and a nutritionist. Both said we are doing a good job. That's encouraging to hear, because some days I feel like I'm doing a miserable job at taking care of my child. His blood sugar levels have been dropping significantly lately, which has confused us. Some days we intentionally undershoot him with insulin, hoping to normalize him and keep him from dipping so low below 100. It hasn't been working.
They informed us that this means that Sam has entered "the honeymoon phase." We had read about this and our doctor had talked about it, but we didn't know when it would start. No one does.
The Honeymoon Phase occurs after a Type 1 diagnosis. In very simplified terms, the very tired pancreas gets to take a breather while the insulin injections take over. In Sam's case, at the time of his diagnosis, his pancreas had not yet shut down completely. He needed a very small amount of insulin to normalize his blood sugar. With practice, we were able to figure things out and generally could predict what his blood sugar number would be. Not always, but often.
Over the past couple of weeks, however, his numbers have been consistently low and confusing. That means that what is left of his beta cells have started working again, so he requires less insulin than he did before. This honeymoon phase can last a few months or even a couple of years. Eventually, his remaining beta cells will stop working and his body will be completely reliant upon the insulin we give him.

That might be more than you ever wanted to know about Diabetes.
Me too.
And yet, that is where we are.

This handsome boy turns 4 in just a matter of days. He seems much older than that. He has been forced to grow up a lot in the past 3 months. He asks about carb counts, he handles his syringes gently and carefully, he no longer fights or complains about being poked and prodded. God has been gracious to him and to us throughout.

Month 2

As we enter month two of life with diabetes, it seems we've all come a long way.

Long gone are the days of screaming and fighting and crying with every injection and every blood test. These days, Sam is calm, relaxed, and compliant.

Each day, the advice of our doctor and nurse makes more sense. They have both said to us that caring for diabetes is an art, not a science. We can never, NEVER predict what Sam's blood sugar will be. All we can do is test it and then respond or react to the number.

Even when we account for every carb and correct his blood sugar with insulin, we so often see a number higher or lower than we expect. It doesn't mean we've done something wrong or bad, it's just information that we have to respond to. This has helped relieve some of the emotion and guilt I was attaching to his results each time.

Our nurse is incredibly amazing and reachable. We have called her on her personal cell phone countless times (even on Christmas Eve!!) and she is always helpful and encouraging. She has helped us to troubleshoot and figure out what seems to be the best balance for Sam.

He requires both fast-acting insulin (immediately after he eats), and longer-lasting insulin. Initially, we gave him his longer-lasting insulin right before bed. This insulin releases slowly and pretty constantly throughout the day, theoretically to keep his blood sugar somewhat normalized. However, what was happening was his blood sugar would be super low in the morning and would spike around 3 PM. So we started giving it in the morning, after breakfast. But then he started spiking later in the evening. Now he gets half a dose after breakfast and half a dose before bed. It's working for now, but it could change again.

We're still learning.

First Checkup

We went back to the Pediatric Endocrinologist this week. It seems strange that this diabetes thing has already been (and has only been!) a part of our lives for over 3 weeks now.

In that time, Sam has gained back about 4 pounds. His cheeks have their color back and he looks healthy and normal again. To be honest, we didn't realize just how sickly he looked until we looked back at pictures- then it seemed painfully obvious. Of course it also helps that both the stomach bug from hell and the fever and cough that plagued our house now seems to be gone.

Everything went really well with the doctor. He once again spent a lot of time with us- over an hour, educating us, asking questions, and encouraging us with his confidence in the technology that is on the horizon that will change Sam's life.

At home, testing and insulin injections are going more smoothly than before. In just the past few days, I've made myself start giving the insulin injections again. I had been relying solely on my husband to do them and had lost all confidence that I could even manage. Miraculously, Sam responds very well to me giving them and he isn't fighting as hard.  Praise God!

Week 1

So, if this is what a normal week with diabetes looks like, just shoot me now.

Our 3 children were plagued with the stomach bug for the past week. (As I knock on wood that it's actually passed...) Just when we thought they were settled and feeling better, another one would pick up where the last one left off.

This constant stress, plus the newness of Sam's diagnosis and new requirements (blood sugar tests, insulin injections) made this past week officially the toughest of my parenting career.

This week plunged us head-first into what our nurse called the "common sense" mode of diabetes care. Because Sam wasn't keeping food in him, his blood sugar remained pretty low. So most days he wasn't requiring insulin, only food to bring his levels back to normal. This was a blessing and a curse. It was a blessing in that he HATES the insulin injections and he fights and bucks and screams at us each time we give them. It was a curse in that, once the bug is gone and he's feeling better, the insulin is going to be a (3-4 times) daily part of his life.

The finger pricks (for blood sugar testing) were a battle as well. Each time, we begged Sam to stop fighting us, and each time, he yelled "NO!"  I couldn't help but think of one of the last scenes in Tangled, where Rapunzel's evil mother yells for her to stop fighting and she responds, "No! For the rest of my life, I'll never stop fighting you!"  Despite what everyone tells us; that this will get easier, that he will get used to it, that it won't be this hard forever, I see him fighting us for the rest of his life. He's always been our most stubborn child. We found a technique that works better than the 3 hour battles we were facing in the first couple of days. They are easier on us, and we think easier on him, but he still screams and fights.

We are seeing in Sam a desire to exhibit control in some aspect of his life. On day 2, he "figured out" that if he doesn't eat, he doesn't have to get poked. So he refused to eat.  And he fights us when it's time to brush his teeth. He fights us when it's time to take a bath. He fights us when it's time to put his shoes on. He is fighting and fighting and fighting.

And we are struggling with anger, and frustration, and confusion.
And we are forced to our knees in prayer.
And we are taking comfort in the truths of scripture, which are true even when they don't feel true: ‎

"We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."--Romans 5:3-5

the days before the diagnosis- part 2

600? How is that possible? Can that be accurate? Our friend tested his own blood sugar, as did my husband. The meter was accurate.

Our friend immediately called her husband, who started trying to get in contact with their doctor- a Pediatric Endocrinologist. It was Saturday, but their doctor was the kind who gives his patients his home phone number, personal cell number, etc. They were confident we would hear back from him. In the meantime, she advised us to cut out all carbs.

Lesson 1- It's not just about sugar, it's about carbs.
In the 12 hours prior, Sam had eaten 2 chocolate-chocolate chip cookies, a cup of hot chocolate, an orange scone, peanut butter toast, crackers and goldfish.

My in-laws were going to be at our house at any moment. Date night didn't seem quite appropriate, but we had a lot to figure out and the extra set of hands would be helpful as we processed. As soon as they walked in the door, my husband dropped the bomb on them. "We just found out that Sam probably has diabetes."

Sam was lying sleepily on the couch, but after eating some cheese and drinking two glasses of milk, he was up and excited to see his grandparents. We got them Chick-fil-A for dinner (grilled nuggets for Sam, which he refused to eat, crying because he wanted "normal" nuggets like his siblings) and then headed out to dinner ourselves. Time alone to digest what we had just learned in the past two hours seemed like a good idea at the time. But by the time our pasta arrived, neither of us had any desire to eat or to be away from home any longer. We immediately got to-go boxes and headed home.

Sam was fine while we were gone. He ate almonds and greek yogurt for dinner, he played Wii and he wrestled with his grandpa.  Life seemed normal enough. That night, he didn't wet the bed. He never even woke up once. I had the words "diabetic coma" running through my head, but in reality it was probably sheer exhaustion and the lack of carbs in his body that allowed him to rest without excessive urination.

The next day was Sunday, the day the stomach bug hit our house.

the days before the diagnosis- part 1

I didn't want to be right. 

I wanted to have been worried about nothing.

I didn't want my "mother's intuition" to be spot on. 

Sam started wetting the bed, which isn't completely unusual for a "potty-trained" boy under the age of 4. But he hadn't done that before. And it was happening every night. We invested in a package of Pull-ups and a plastic sheet and thought it would pass. 

But it didn't. And then he was peeing more frequently during the day.

The red flag, for me, came 3 weeks ago, when I took all 3 kids out for dinner and left my sickly husband at home on the couch. As soon we sat down to order, Sam had to go to the bathroom. I asked his big brother to take him. Then he had to go again before we left. Two times in 30 minutes? That seems odd. When we got in the car to head home, he immediately asked for his water cup. I didn't have it, and he asked again a few minutes later. I assured him we would be home soon and we'd get a drink then. 

That night, I told my husband what happened and asked him to confirm- isn't excessive thirst and frequent urination a sign of diabetes? His face dropped as he told me that he had been concerned about that, as well. He had noticed how very irritable Sam gets when he gets hungry. In all honesty, I had chalked that up to being almost 4, or just his general disposition. 

We didn't talk about it much more, but it kept nagging at me. We have a few church friends who have Type 1 Diabetes. I called the mom of one of those boys and told her what I was observing in Sam and about my concerns. She shared her experience and then encouraged me to test his blood sugar, as that would be the best way to get an answer. She offered to come over with her son's extra kit and do the test with us. We wanted to wait. 

3 days later, I couldn't wait any longer. Nothing huge happened. It was more of the same- bed wetting, coming close to accidents during the day, lots of water guzzling. My husband and I had a date planned for Saturday night and the in-laws were coming to watch the kids in about 2 hours. For whatever reason (Divine intervention), I told him I didn't want to wait any longer. I called our friend and she showed up with the test kit within the hour. It didn't work (dead battery) so she called her son and he came over with his extra kit.

One finger prick later, our lives changed. 

Sam's blood sugar was 600.  (Normal is between 70-100)

Out to dinner with the kids. The first night I used the "D" word.