JDRF Walk

We participated in our local JDRF walk this weekend - the Juvenile Diabetes Research Foundation walk. It was damp and drizzled from time to time, but the temperature was cool and it was a nice morning. We saw some familiar faces and met some new friends and even got to talk to some pharmaceutical providers about the types of research and development they are doing in diabetes management

This is definitely a new "annual event" for the Stopper family.

Highs and Lows (again)

I've used that title before, but its still so appropriate I'm using it again.

It is the best way to explain Emma's week.

We are still on a roller coaster with her readings, although not as dramatic as we were. Starting last Sunday at lunchtime, Emma's readings went over 300 and they stayed there for 24 hours, despite giving her multiple insulin injections. They just didn't want to come down. It got as high as 475, which doesn't scare us nearly as much as it used to!! Anyway, after 24 hours, I went ahead and called into the nurse who told me to give her until she got through another meal and see how she was doing. I tested her right before lunch on Monday and she had come down - to TWENTY-NINE. That is NOT a typo - she was at 29. Many people would be unconscious at that reading - she was running around giggling as I corralled her into her high chair. Needless to say, we were a little freaked out by that reading and couldn't explain it - the nurses are baffled.

That started a period, however, with few highs. She had one high overnight that we treated but then the nurse said not to bother. It seems that children this age often excrete a growth hormone while they are sleeping - and its often around 3am - and it makes their blood sugar increase. So, when you swear that you think your children grew overnight, they did!

Anyway, her growth spurt subsided. We haven't had a reading over 250 since then. Her readings have been in the 60s and 70s most times. This is a little low for our liking (we want her over 100). And, she has decided she doesn't want to eat - which is often typical after a growth spurt too. So, between Emma's low blood glucose readings and her reduced eating, we have actually had several meals where we haven't even had to give her insulin. It was a nice break to give her poor arms and legs a break from all of the poking.

She's tired though because I have to keep waking her up at night to give her juice to keep her readings up - seems backwards to us!!

But, the nurses have changed around her treatment a little and we are trying a couple of things a little different to see how she does. We'll give that the weekend and see.

But, as I tell other folks - Emma seems no worse for the wear. Other than fussing about her shots right now, she's running around perfectly normal (like any normal 2 year old that is testing her boundaries and getting into EVERYTHING!)

You really can find out almost anything on the Internet

I do believe that we are fortunate that Emma has developed Diabetes during this time of information technology. It makes it much easier for us to do Carb counting for her meals.

I haven't been feeling well today and decided that I was ordering pizza for dinner since Mike was leaving town. So, off to the Pizza Hut web site I go. I can put in the kind of pizza, toppings, and crust, and how many pieces of pizza Emma might eat, and it will give me a complete dietary breakdown, including carb count.

Did you know that 1 piece of Pizza Hut thin crust pizza with just cheese has 30 carbs!!

I have also been able to find out that a Chicken Nuggett Happy meal has 40 carbs - 10 for the nuggets and 30 for the french fries.

This is good information to know as we desire flexibility with when and where we eat!

A quick update

I've been meaning to provide a quick update for a few days and just haven't gotten around to it.

We are settling into a good routine here. Emma's new insulin regimen works much better. Now if she doesn't eat enough, we can just adjust her insulin down. If she wants seconds, we can just adjust her dose up.

Her blood glucose levels aren't swinging as much as they were, but still swinging some. She has been going low at night, which is intriguing, but we may just adjust by giving her a little snack before bed (we cut that out just because it keeps her awake to eat at 8pm). She also seems to be a little high before dinner, but that is most likely from her afternoon snack, so we'll probably start giving her insulin after that.

She has adjusted beautifully. When we tell her we need to poke her finger, she always says "pinkie one". Then she asks if we have to "pokie leg?" She has now chosen to sit in her rocking chair in front of the TV for her injection and its just gotten so easy because she doesn't even say anything most times now when we give it to her.

Had a little scare earlier this week when the sleep-deprived Mommy gave Emma the wrong insulin in the morning. I realized it about 1 hour into its 2 hour effectiveness - it was her "short acting" insulin. So, she got about another meal's worth of carbohydrates in the form of juice and granola bars to offset the insulin and I was very happy when her readings came back up. The nurse said that is actually a pretty common mistake - didn't feel too common to me. At least it was a short-acting insulin and in 3 hours I knew it was completely back to normal.

So, outside of feeling like we have a newborn that has to eat every 3 hours all night, things are pretty normal. I have gotten Samantha and Michael back into school, although not the full routine that I'd like. We won't be having "Spring Break" per se this week, as I have assignments for them to do, but I'm sure if one of their friends comes knocking on the door to play, I'll let them go out! Is it awful to pray for rain! It's gonna be a tough week regardless as Mike leaves in about 2 hours for a week in San Francisco.

Anyway, looking forward to Easter. Larry (my brother) and his family will be here Sat night after spending a few days in the city and then on Sunday we are driving to Charlottesville to eat brunch at the Boars Head Inn with my parents and my older brother, who I haven't seen in 15 years!

As I hear Emma talking from her bed upstairs, I'll wrap it up and go retrieve her for a snack - anyone want to predict how many of her things are thrown out of the crib and onto the floor? I guess all of them!

New Doctor, New Regimen - seems to be working

So we saw the doctor who will be our permanent endocrinologist yesterday. It was a crazy, hectic appointment because we had to go to Children's Hospital in DC; AND, it was the Doctor's day "on call" which is the only way she was able to actually see us.

She was frustruated with the regimen that the doctor in the hospital had put Emma on; as we were since her levels hadn't stabilized over the week and a half we'd been out of the hospital.

She started a new regimen yesterday. We like it for a variety of reasons:
- We increased her "long lasting" dose (her Basel). This is supposed to be the insulin that manages her throughout the day.
- We changed to a fast-acting "after meal" insulin for adjustments(Bolas). This is great because its based on her level before eating AND how much she eats. If she wants more carbs at a certain meal, we can increase her dose to adjust. If we can't seem to force the food in her mouth (which is often the case), we just decrease her dose. This is GREAT for a child who isn't in a position to understand the need for a certain amount of food.

In the past 24 hours, she hasn't gone above 250 (whereas she had been averaging higher than that most days). She has been staying mostly between 80 and 150 - and our target is 180!! So, for us, we are thrilled with the way her body is reacting. Of course, this could also mean her pancreas has kicked back in for a last hurrah, but either way, she isn't swinging and that makes us happy.

Baffling Body Chemistry

I assure you, after we get through this initial phase with Emma, it won't all be about her Diabetes. But for now...

Emma had a pretty good day yesterday. He numbers were getting more normal and the night before when I felt certain she was going to drop really low (because of her evening numbers), she stayed right on track. The one nurse I talked to said that her pancrease could even be beginning the "honeymoon phase" (after a person's sugars get back under control, their pancreas will often begin secreting insulin again. It's not much and it doesn't last forever - its sort of a "swan song" for your pancreas.

Well, Emma's body chemistry said "ha".

She was high over night (over 300). High enough for me to page the doctor, which I'm sure she loves at 3:15am! The Doctor had us give her an extra little dose of insulin overnight. But, her breakfast reading, morning snack, AND lunch readings were ALL over 300. It just doesn't make sense with the amount of insulin she had. It even baffled the nurse on the phone at lunch when she was deciding what to do. Both the doctor and the nurse made a comment "maybe she's coming down with something" (at which point I just wanted to pull out the gun and shoot myself). Getting a bug evidentally messes up your sugars too. Well, the nurse said to do Emma's normal dose and then check it about 3 hours later, when it should have been in effect (and the morning dose should still be working, since they overlap).

She was 150.

It just makes no sense, after being close to 400 for 12 hours, for a drop to 150 just 3 hours later!!

Baffling disease.

But hey, we got in with the new Endocrinologist on Monday. We have to drive all the way to DC for the initial visit BUT she got us a 10:30 appt, instead of the originally proposed 9am (which would have meant a 7am departure!)

The kind of post you wish you didn't have to post

For those in our immediate family and close friends, this is not new information. For others, it is.

Last Wednesday night at 10pm, I took Emma (our 2 year old) to the Emergency Room with extremely high blood glucose levels (a normal person would be between 80 and 130 and she was at 580). She was immediately admitted to the ICU and diagnosed with Type I (insulin dependent) Diabetes.

She stayed in the hospital until Saturday when she returned home and we began the processing of testing, and insulin shots on our own. I have spoken to the Doctor no fewer than 2 times a day since we have returned, and we have constantly been tweaking and modifying her injections until her body adjusts to the insulin and stabailizes.

I am happy to say that she has been "almost" stable for 24 hours. She had one "higher than normal" reading overnight, but the Doctor is fairly confident as to why this is happening and after leaving things alone today, she may make one more adjustment tomorrow that will probably address that reading.

But that's not the end of it. She will always have to monitor her sugar levels, and watch what she is eating. Right now, the struggles are making sure a 2-year-old eats what she needs to eat based on our injections. As she gets older, it will be more a "defiance" that will cause our challenges. And each growth spurt, and illness will be cause for adjustments.

But for now, we are just happy she is home and acting as though nothing has changed. She acts like nothing has happened and right now, she is currently transferring crayons back and forth from a lunch box to a Ziploc and back again (I think she has done this about 10 times now).

So for us, we have a goal of this having the least impact possible and being able to do things just as we normally have done. I do expect, however, that she will be eating more than one meal fed from tupperware at the soccer or baseball field so that she doesn't get off schedule.

From time to time, I will provide updates here, as its easier to cover everyone here than remembering all the emails I need to send!