L has decided to do her own injections.
This is her second day doing this.
W*O*W!
(she is 7...)
Thursday, August 24, 2006
Tuesday, August 22, 2006
504 plans
We are working on putting together a 504 plan for L before she goes back to school in a few weeks. We went to a ADA (American Diabetes Association) training seminar on this tonight.
A 504 plan is actually Section 504 of the Rehibilitation Act of 1973 and Americans with Disabilities Act of 1990 (ADA). It is a care procedure document that is created for a student with a disability that the school must follow while your child is in their custody. L goes to a private school, but we are still going to create a 504 plan with them for her.
The ADA has some samples of these on their website http://www.diabetes.org which are helpful. I also like a simple "at-a-glance care plan" that a company called Type 1 Tools makes www.type1tools.com. That one is not a 504 plan, but is great for having in the classroom, or for babysitters.
It is great that the ADA has training available like this. There were about 10 parents there, and it was great to hear their stories (we were the most recently diagnosed family) and get some advice.
On the other hand, I also feel the reality of what parentling a child with a cronic condition is like at evenings like this and feel a little depressed and overwhelmed afterwards. I prefer the days when it feels normal enough not to matter.
A 504 plan is actually Section 504 of the Rehibilitation Act of 1973 and Americans with Disabilities Act of 1990 (ADA). It is a care procedure document that is created for a student with a disability that the school must follow while your child is in their custody. L goes to a private school, but we are still going to create a 504 plan with them for her.
The ADA has some samples of these on their website http://www.diabetes.org which are helpful. I also like a simple "at-a-glance care plan" that a company called Type 1 Tools makes www.type1tools.com. That one is not a 504 plan, but is great for having in the classroom, or for babysitters.
It is great that the ADA has training available like this. There were about 10 parents there, and it was great to hear their stories (we were the most recently diagnosed family) and get some advice.
On the other hand, I also feel the reality of what parentling a child with a cronic condition is like at evenings like this and feel a little depressed and overwhelmed afterwards. I prefer the days when it feels normal enough not to matter.
Friday, August 18, 2006
A+
2nd clininc appointment today - the doctor gave our family an A+!
Here are a few things we discussed:
1. When mixing insulin, you have to draw the short acting 1st (NPH) and then the long acting 2nd(Lantus). If you do it the other way around (as I have been) you contaminate the NPH and it becomes uneffective. Oops.
2. Add a vile of a long acting insulin (i.e. Lantus) and syringes to any school emergency kits.
3. ALL SUGARS ARE CREATED EQUAL. Count the Carbs.
4. There is still no cure for type 1 diabetes
5. Nothing can bring a proud tear to your eye like watching your 7 year old give her doctor an injection.
6. Don't worry, the numbers are good. Wait until the "honeymoon" period is over...
Here are a few things we discussed:
1. When mixing insulin, you have to draw the short acting 1st (NPH) and then the long acting 2nd(Lantus). If you do it the other way around (as I have been) you contaminate the NPH and it becomes uneffective. Oops.
2. Add a vile of a long acting insulin (i.e. Lantus) and syringes to any school emergency kits.
3. ALL SUGARS ARE CREATED EQUAL. Count the Carbs.
4. There is still no cure for type 1 diabetes
5. Nothing can bring a proud tear to your eye like watching your 7 year old give her doctor an injection.
6. Don't worry, the numbers are good. Wait until the "honeymoon" period is over...
Monday, August 14, 2006
i heart guts!
This just in!
We might be working with genius artist Wendy B. of Weeber World to create an original design for a juvenile diabetes fundraiser! She does the sweetist drawings of internal organs I have ever seen with the funniest captions!
Check out her designs and buy stuff!
Sunday, August 13, 2006
Spoiled Insulin, Part 2
We started with the new insulin today. She had lower numbers, but still high at dinner.
A friend suggested that a growth spurt could make numbers higher - natural steroids. Interesting.
Giving it another day or two. We can review with the endrocrinologist at her two month check up on Friday.
stay tuned...
A friend suggested that a growth spurt could make numbers higher - natural steroids. Interesting.
Giving it another day or two. We can review with the endrocrinologist at her two month check up on Friday.
stay tuned...
Saturday, August 12, 2006
Spoiled Insulin?
Two highs in a row tonight for apparently no reason. We were expecting lows after the ice skating lesson and we were off schedule - running an hour late.
Blood sugar was 345. Wash your hand and retest. 324. Test again. 317. Bedtime test. over 300 again. Test for Keytones - negative (relief)
For those of you who have been doing this for years this probably seems like we are crazy to worry. Maybe not. To me it is crazy not to.
Check the books. Maybe it is because her insulin isn't working. We've been using hte same bottles we had since we can home from the hospital. (T confirms this theory with the doc after her dinner dose)
We'll see tomorrow.
Change the insulin every 28-31 days from now on.
Learn by our mistakes.
Blood sugar was 345. Wash your hand and retest. 324. Test again. 317. Bedtime test. over 300 again. Test for Keytones - negative (relief)
For those of you who have been doing this for years this probably seems like we are crazy to worry. Maybe not. To me it is crazy not to.
Check the books. Maybe it is because her insulin isn't working. We've been using hte same bottles we had since we can home from the hospital. (T confirms this theory with the doc after her dinner dose)
We'll see tomorrow.
Change the insulin every 28-31 days from now on.
Learn by our mistakes.
Tuesday, August 08, 2006
Business Call #2
I felt much more confident when I dropped L off at camp this morning. She was excited to be there, and yesterday went so well that I was okay when I left. Besides, we would hear from her at 11:30 - her business call...
T missed her call. I missed it too. Actually I heard the phone ring, but I didn't recognise the number and I ignored it. Arrgh. What was I thinking.
She was low. 65.
She is supposed to drink a juice box and retest in 15 minutes - but this is a fuzzy area, because it was lunch time and she decided to just eat lunch. She decided this with the camp director - even though I had explicit instructions written on her care sheet.
I can't get mad about this. She is doing so well and really making decisions about managing this. But I am stressed. It is just how I am.
The camp told me they were impressed that T & I called back so quickly when he got her message. You guys are really good! But that is our job. That is the seriousness of the situation.
T checked and the Migo phones are in stock at the Verizon Store. Going over to the dark side and getting my kid a phone.
T missed her call. I missed it too. Actually I heard the phone ring, but I didn't recognise the number and I ignored it. Arrgh. What was I thinking.
She was low. 65.
She is supposed to drink a juice box and retest in 15 minutes - but this is a fuzzy area, because it was lunch time and she decided to just eat lunch. She decided this with the camp director - even though I had explicit instructions written on her care sheet.
I can't get mad about this. She is doing so well and really making decisions about managing this. But I am stressed. It is just how I am.
The camp told me they were impressed that T & I called back so quickly when he got her message. You guys are really good! But that is our job. That is the seriousness of the situation.
T checked and the Migo phones are in stock at the Verizon Store. Going over to the dark side and getting my kid a phone.
Monday, August 07, 2006
Letter From a Friend with Type 1
my sister's friend sent us this letter when L was first diagnosed. It is great advice from someone who lives with type 1
The pump is GREAT. It automatically shoots insulin every 2 -3 minutes, all day. Then when you eat, you "bolus", which means you push a button and it shoots in more. You only have to deal with a needle every other day. It's like an IV, sort of. You stick the needle in your stomach, pull the needle out, and you are left with a little tube in your stomach with a plastic part that you stick to yourself.
Then the insulin pump has a "plug" on the end of the tube that you can snap into the part on your stomach. It makes life very flexible, and it is easy to use when you participate in any non-contact sport. Most people don't wear it if they are playing football or doing karate, but other than that, you can wear it for ballet and everything. I highly recommend it.
I also highly recommend making sure L knows everything that the adults know. It's so important that she understand that SHE is in control of this, not her parents. She has to be the one to know how to test her blood sugar, give her shots, etc. I know it seems like a lot for a 7 year old to take on, but it really isn't. If she understands that this is *hers*, she'll be MUCH better off in the future.
The kids I know whose parents did everything for them grew up to be very bad, irresponsible Diabetics. The kids who were involved with their own treatment were good. If she views this as something the grown ups take care of, that is a bad thing. I know that since it's new and she is young, her parents have to help - BUT - getting her involved in every aspect as soon as possible is vital.
You can also make it fun, like buying her a fun watch with an alarm to remind her when to test her blood sugar, or decorating her glucometer in a fun way, etc. As soon as possible, her parents should stop doing tests for her (if they haven't already) and let her do it on her own. The same with shots. One way to make it less intimidating is to let L give the grown ups shots - obviously, don't fill the syringe with anything, but just let her practice stabbing you guys with the syringe. I promise it doesn't hurt ;-)
Another thing is, if she isn't filling her own syringes yet, have her check to
make sure her parents did it right - and occassionally do it wrong to see if she can catch it. Have her recognize how much she needs to take, if there are bubbles, etc. The last thing is, as she gets more and more "in charge" of things, have her parents keep guiding her and making sure she's on ther right track, but make sure she knows she's the expert and she's the one in charge. She should WANT to know what her blood sugar is, it shouldn't be a chore or something she does unwillingly. She should want to make sure it's good, etc. I know she seems too young to be learning all this, but she really isn't.
And another thing to emphasize is that if she can take control and learn everything, *she* can be the one to control how she cheats. There's no reason she can't have cake at a friend's birthday party, she just has to know how to calculate how much extra insulin to take. Obviously, work with her doctor on those calculations first, but usually what will happen is there will be a scale.
Mine is this: 15 grams of carbs = 3 units of insulin. So I can essentially eat anything, even when I was on shots, as long as I could figure out how many carbs it was, and then take insulin accordingly. With shots, it means extra shots, but that's ok. I can eat a lunch that contains 45 grams of carbs and I would take 9 units of insulin, or I can eat a candy bar that contains 35 grams of carbs and take 7 units of insulin. It all works out the same, it's just about carbs. But again, make sure her doctor is the one figuring this stuff out, because her scale will be completely different from mine. I'm just showing that it's possible.
The pump is GREAT. It automatically shoots insulin every 2 -3 minutes, all day. Then when you eat, you "bolus", which means you push a button and it shoots in more. You only have to deal with a needle every other day. It's like an IV, sort of. You stick the needle in your stomach, pull the needle out, and you are left with a little tube in your stomach with a plastic part that you stick to yourself.
Then the insulin pump has a "plug" on the end of the tube that you can snap into the part on your stomach. It makes life very flexible, and it is easy to use when you participate in any non-contact sport. Most people don't wear it if they are playing football or doing karate, but other than that, you can wear it for ballet and everything. I highly recommend it.
I also highly recommend making sure L knows everything that the adults know. It's so important that she understand that SHE is in control of this, not her parents. She has to be the one to know how to test her blood sugar, give her shots, etc. I know it seems like a lot for a 7 year old to take on, but it really isn't. If she understands that this is *hers*, she'll be MUCH better off in the future.
The kids I know whose parents did everything for them grew up to be very bad, irresponsible Diabetics. The kids who were involved with their own treatment were good. If she views this as something the grown ups take care of, that is a bad thing. I know that since it's new and she is young, her parents have to help - BUT - getting her involved in every aspect as soon as possible is vital.
You can also make it fun, like buying her a fun watch with an alarm to remind her when to test her blood sugar, or decorating her glucometer in a fun way, etc. As soon as possible, her parents should stop doing tests for her (if they haven't already) and let her do it on her own. The same with shots. One way to make it less intimidating is to let L give the grown ups shots - obviously, don't fill the syringe with anything, but just let her practice stabbing you guys with the syringe. I promise it doesn't hurt ;-)
Another thing is, if she isn't filling her own syringes yet, have her check to
make sure her parents did it right - and occassionally do it wrong to see if she can catch it. Have her recognize how much she needs to take, if there are bubbles, etc. The last thing is, as she gets more and more "in charge" of things, have her parents keep guiding her and making sure she's on ther right track, but make sure she knows she's the expert and she's the one in charge. She should WANT to know what her blood sugar is, it shouldn't be a chore or something she does unwillingly. She should want to make sure it's good, etc. I know she seems too young to be learning all this, but she really isn't.
And another thing to emphasize is that if she can take control and learn everything, *she* can be the one to control how she cheats. There's no reason she can't have cake at a friend's birthday party, she just has to know how to calculate how much extra insulin to take. Obviously, work with her doctor on those calculations first, but usually what will happen is there will be a scale.
Mine is this: 15 grams of carbs = 3 units of insulin. So I can essentially eat anything, even when I was on shots, as long as I could figure out how many carbs it was, and then take insulin accordingly. With shots, it means extra shots, but that's ok. I can eat a lunch that contains 45 grams of carbs and I would take 9 units of insulin, or I can eat a candy bar that contains 35 grams of carbs and take 7 units of insulin. It all works out the same, it's just about carbs. But again, make sure her doctor is the one figuring this stuff out, because her scale will be completely different from mine. I'm just showing that it's possible.
Business Call #1
Dropped L off at an all-day camp today and we agreed that she would make a business call to her dad at lunch to review her numbers.
This was advice that a friend gave us and we decided to try it and see if it would be a good system for us to touch base during the day.
Here is the recap:
"Hi Dad. My numbers were 105 at lunch, 146 at snack. Okay. Bye!"
Well, that is one well adjusted seven-year-old!
This was advice that a friend gave us and we decided to try it and see if it would be a good system for us to touch base during the day.
Here is the recap:
"Hi Dad. My numbers were 105 at lunch, 146 at snack. Okay. Bye!"
Well, that is one well adjusted seven-year-old!
Sunday, August 06, 2006
BYO-SFMS
Insulin - check
Syrings - check
emergency kit - check
sugar free mapel syrup - OMG...
This morning we decided to have brunch out - something we used to do often before L's diagnosis, and havn't done since. We had her carbs all figured out.
4" Pancakes, 17g (x2=34g
8oz Hot Chocolate 30g
bacon - 0g
sugar free maple syrup - og
for a total of 60ish carbs.
No wait for tables when we get there - good, because we all allready 1/2 hour past regular scheduled eating time (7:30) Dad is meeting us there, but he had to take a shower, so he is running behind.
I prepare the insulin injection at the table (and try to ignore the comments of the couple sitting next to us: "What are they doing? I think that is insulin. Oh really?...") and then remember I didn't think to bring the sugar free maple syrup.
We ask the server - no, they don't have any. T offeres to go to the market to get some. Cool. But I have to get some carbs into L soon - and I order her pancakes - they are a special item, so they will take 15 minutes. That might just work out.
Still, I'm worried that she is going to go low - maybe they have a sugar free vanilla soda and I can get something else for L while we wait for T to come back with the syrup. Nope. Plan B. I order her hot chocolate. Our server is getting annoyed. I call her back and order the pancakes and appologize for being complicated. She says its okay, but I know she wishes we would just leave...
T gets back with the syrup quickly. We order our food. I am still worried that she is going to go low. My Dad shows up. The server has to come back and take his order now too. This time its another server - our original one is ignoring us.
Some relaxing brunch. T and I decide we will carry Sugar Free Mapel Syrup in a flask from now on. One more thing to remember to keep in our kit.
Regular syrup is 54g carbs for 1/4 cup.
BYO SFMS.
Syrings - check
emergency kit - check
sugar free mapel syrup - OMG...
This morning we decided to have brunch out - something we used to do often before L's diagnosis, and havn't done since. We had her carbs all figured out.
4" Pancakes, 17g (x2=34g
8oz Hot Chocolate 30g
bacon - 0g
sugar free maple syrup - og
for a total of 60ish carbs.
No wait for tables when we get there - good, because we all allready 1/2 hour past regular scheduled eating time (7:30) Dad is meeting us there, but he had to take a shower, so he is running behind.
I prepare the insulin injection at the table (and try to ignore the comments of the couple sitting next to us: "What are they doing? I think that is insulin. Oh really?...") and then remember I didn't think to bring the sugar free maple syrup.
We ask the server - no, they don't have any. T offeres to go to the market to get some. Cool. But I have to get some carbs into L soon - and I order her pancakes - they are a special item, so they will take 15 minutes. That might just work out.
Still, I'm worried that she is going to go low - maybe they have a sugar free vanilla soda and I can get something else for L while we wait for T to come back with the syrup. Nope. Plan B. I order her hot chocolate. Our server is getting annoyed. I call her back and order the pancakes and appologize for being complicated. She says its okay, but I know she wishes we would just leave...
T gets back with the syrup quickly. We order our food. I am still worried that she is going to go low. My Dad shows up. The server has to come back and take his order now too. This time its another server - our original one is ignoring us.
Some relaxing brunch. T and I decide we will carry Sugar Free Mapel Syrup in a flask from now on. One more thing to remember to keep in our kit.
Regular syrup is 54g carbs for 1/4 cup.
BYO SFMS.
Friday, August 04, 2006
Dieabeetiz
This is a book that Lili wrote the day she came home from the hospital
tipe one Dieabeetiz
by Liliana
I have dieabeetez. Me, Liliana Morrisey. Well, if you have tipe one you may have to take 5 finger pocks a day jest like me.
Here is another cind of shot. Its a insulin shot. A Inslin shot is wer your body is not working vary well and its not macing enof inslin.
And if your body is not making enof inslin, you may have to take a inclin shot2 times a day like me.
Dieabeetiz is avary seryis becus I had to go to the hosbitl.
The end
tipe one Dieabeetiz
by Liliana
I have dieabeetez. Me, Liliana Morrisey. Well, if you have tipe one you may have to take 5 finger pocks a day jest like me.
Here is another cind of shot. Its a insulin shot. A Inslin shot is wer your body is not working vary well and its not macing enof inslin.
And if your body is not making enof inslin, you may have to take a inclin shot2 times a day like me.
Dieabeetiz is avary seryis becus I had to go to the hosbitl.
The end
Thursday, August 03, 2006
Hello Muddah'
So, I took a big leap this week and let Lil go to a half day camp.
Walking away and leaving her in the care of the camp director and counselors was much worse than that first day of kindergarten. It was terrifying.
I am happy to report that she is having a great time! She met another girl at camp who has type 1: What are the odds of that? Oh - yeah, the odds are 1 in 400...
So, to ease my fears, I am thinking about getting her a "migo" phone. Me, the last native LA-ian to get a cell phone, is now considering buying one for my 7-year-old. I did some research and this one seems cool. Anyone out there have any feedback on this phone (not on my decision, please...I've beat myself up plenty about that allready!)
Wednesday, August 02, 2006
Diabetes Sucks
This is the best bracelet EVER! We ordered some from Hope Paige designs and they came today. They have the best med-alert jewelry I have found, and this really got me to smile!
http://www.hopepaige.com/
Tuesday, August 01, 2006
Bread & Butter
I am on a quest for a low carb bread. Breads are so high in carbs. Bagels are even worse! I ordered low carb bagels from Western Bagels but Lili didn't like them. I can't say I did really either - HOWEVER - I discovered they make "bagelettes" which are a perfect size for snacks and are only 16g carbs each! YUM!
http://www.westernbagel.com
My other recent discovery is Ciabatta bread - sandwich loaf style. There is a local baker here (Portland French Bakery) that makes it and it is 27g carbs for TWO slices. This is no huge discovery, most breads are 17g per slice - but those extra 7g carbs add up.
For the record, butter and cream cheese are 0g carb and while they are high in fat, they are essentially carb-free!
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