I have been keeping a private journal of thoughts and information about our 2 year old Emma, who was diagnosed with diabetes in March of 2007. Over the next week or so, I will move posts from my other blog and post other thoughts that I have kept to bring all of my diabetes information together.
I hope this is theraputic for me and helpful for someone else who might be experiencing diabetes with their little one.
Tuesday, July 17, 2007
Monday, July 16, 2007
I'm so tired
When Emma was first diagnosed with Diabetes, the adrenalin kept me going. Kept me going through 3 nights of little to no sleep in the hospital (including a drive from one hospital to another at 1am the first night, and a switch from the PICU to the Pediatric floor at 1am the 2nd night). Kept me going through conflicting Doctor's orders and late food (which is an issue for a diabetic).
Once we came home, I got emotional. It didn't take much to set me off. The first month she was home was a blur. Hundreds of readings we didn't understand, constant calls to the Doctor, then the change to a new Doctor, lots of training with the new Doctor, and finally stabalizing a little.
We still get up at least once a night, and usually twice. Typically around midnight and 3am, based on what her readings are and what time we eat dinner. This is to prevent VERY SCARY low blood sugar readings overnight. I have told many people that its like having a newborn (having to get up overnight) without the sleeping during the day that helps a newborn's mother recover.
Now the reality of our life is really setting in. As I sat on the couch to give Emma her two injections after dinner I just sat there a minute and realized "this is my life". Until she leaves my house as an adult, I will be responsible for making sure she gets her medication all day and night, every day of my life. What an awesome burden. I'm so tired. And we've only just started.
There are lots of advancements on the horizon. Continuous Blood Glucose Monitoring. Infrared BG meters. Insulin Pumps. But, the only way to change this is to find a cure. In my lifetime. I can only hope.
But for now, I'm just tired. My brain is so tired of the responsibility. So tired of the worrying. So tired of watching the clock because I really want to know if her insulin worked at the 3 hour mark. So tired of testing her blood because she's fussy and I can't tell if she's just being 2 or her blood sugar is low.
I'm just so tired.
Once we came home, I got emotional. It didn't take much to set me off. The first month she was home was a blur. Hundreds of readings we didn't understand, constant calls to the Doctor, then the change to a new Doctor, lots of training with the new Doctor, and finally stabalizing a little.
We still get up at least once a night, and usually twice. Typically around midnight and 3am, based on what her readings are and what time we eat dinner. This is to prevent VERY SCARY low blood sugar readings overnight. I have told many people that its like having a newborn (having to get up overnight) without the sleeping during the day that helps a newborn's mother recover.
Now the reality of our life is really setting in. As I sat on the couch to give Emma her two injections after dinner I just sat there a minute and realized "this is my life". Until she leaves my house as an adult, I will be responsible for making sure she gets her medication all day and night, every day of my life. What an awesome burden. I'm so tired. And we've only just started.
There are lots of advancements on the horizon. Continuous Blood Glucose Monitoring. Infrared BG meters. Insulin Pumps. But, the only way to change this is to find a cure. In my lifetime. I can only hope.
But for now, I'm just tired. My brain is so tired of the responsibility. So tired of the worrying. So tired of watching the clock because I really want to know if her insulin worked at the 3 hour mark. So tired of testing her blood because she's fussy and I can't tell if she's just being 2 or her blood sugar is low.
I'm just so tired.
Friday, July 13, 2007
Finding Joy in the Morning
"Joy in the Morning" is the name of a blog that I often frequent. This woman is an inspiration. She strives to find joy in the morning despite some serious challenges in her life, including several miscarriages, a lost child at birth, serious childhood illnesses and the loss of a child at age 16. I think I would just curl up and die but she goes on and thrives.
I don't have nearly the challenges this woman has in her life. I don't have nearly the challenges that many others have in the lives. I do have challenges - don't get me wrong - but not like some others I read.
One of my challenges right now is wondering if I will EVER get more than 6-7 hours of sleep a night - and that is INTERRUPTED sleep. I see no prospects in the future for CONTINUOUS sleep. We have to get up with Emma at least once, and often twice overnight, to check her blood glucose levels. And worse than that, if we have to treat her, we have to stay awake at least 30 minutes to check her again. And if we aren't happy with the results, we have to treat her again and wait another 30 mintues. And I remind you this is often at 3am.
We are tired in our house. Physically tired. Emotionally tired. Completely drained. It is just so affecting our overall lives in so many ways.
I'm having trouble finding joy in the morning - most days I'd just like to find sleep. I hope the joy finds me again soon.
I don't have nearly the challenges this woman has in her life. I don't have nearly the challenges that many others have in the lives. I do have challenges - don't get me wrong - but not like some others I read.
One of my challenges right now is wondering if I will EVER get more than 6-7 hours of sleep a night - and that is INTERRUPTED sleep. I see no prospects in the future for CONTINUOUS sleep. We have to get up with Emma at least once, and often twice overnight, to check her blood glucose levels. And worse than that, if we have to treat her, we have to stay awake at least 30 minutes to check her again. And if we aren't happy with the results, we have to treat her again and wait another 30 mintues. And I remind you this is often at 3am.
We are tired in our house. Physically tired. Emotionally tired. Completely drained. It is just so affecting our overall lives in so many ways.
I'm having trouble finding joy in the morning - most days I'd just like to find sleep. I hope the joy finds me again soon.
Sunday, June 3, 2007
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.
Friday, April 13, 2007
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!)
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!)
Sunday, April 1, 2007
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!
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!
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!
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