I don't know what to say I'm so sick of this disease! I hate complaining on here all the time, but it's really my only therapy so bear with me!! I know it could be worse, I really, really do, and I thank God every day, every single day...but on the same hand it's really slowly sucking the life out of me. It's not all the things I have to do, I can handle any kind of task that will better her health or keep her healthy, it's the emotional impact of watching your child go through it!! I can't describe how it feels when she's sneaking food or watching other kids have what she can't, it slowly chips away at your heart, and let me tell you my heart is a mess right now!!
(I'm going to vent now)
It's eating dinner as a family and hating to let your other kids have anything extra because you know she can't. It's that she is ALWAYS hungry and there's not a dang thing I can do about it (insulin makes you hungry). It's the bruises on her arms, legs, butt, and stomach that bring tears to my eyes daily. It's feeling helpless. It's wanting so badly to make it better when I can't. It's worrying about things like her having babies, living on her own, drinking when she's older, being away from us, having seizures and all the crap that comes along with having Diabetes. It's wondering if Tim, me or one of our kids are a kidney match (not Harrison of course) so that if she desperately needs a kidney there's one. It's the thought of those beautiful blue eyes not being able to see.
I want her to feel normal, I want her to be healthy, I want her to be carefree like other kids can and not worry abouts carbs and serving sizes!!!
I NEED A DAMN CURE FOR THIS DISEASE!!!!!
Tuesday, June 16, 2009
Monday, June 15, 2009
Pump
So as most of you know Olivia was going to her pump opt on Thursday, which I couldn't of been more excited for!! This was it, this was the day I could order her pump, thing would be better now, right?? Wrong!
So at the opt I asked for a nurse to come up and actually insert the catheter of the Omnipod into her, big mistake!! This lady had no idea what she was doing!! Tim and I told her we wanted it to be inserted in her tummy, I also told her I wanted to pinch the site while it was being inserted. She put it on her, Tim and I told her we think it's backwards, she assured us it wasn't. Click, it was inserted and then Olivia started screaming and crying, "take it out, take it out it hurts, it hurts" sure as sh*t this lady put it on wrong and it was very close to Olivia's hip bone, we took it out at once!! I was not very happy, the nurse disappeared she must of known that I was going to kill her!!
I bribe Olivia with a trip to Target to have the normal site put in for her mandatory 3 days of wearing a dummy pump. She cried and cried but there was no place to run, so I held her while the lady did it. (Flash back to holding her down while they were giving her her first shot) She was crying, I was crying...why does this have to be her life.
She wouldn't even walk, she cryed all the way to Target, but cheered up as she was picking out her toy. People stared...I don't like this very much. Yes, she is hooked to something, it's now very visual that she is not normal, there is something wrong with her. Life sucks.
The next three days was a roller coaster ride from hell. The pump is very hard to be hooked to while getting dressed and going to the bathroom. It's not really meant for summer dresses and swimsuits.
We decided this wasn't for us, maybe we would be going with the Omnipod after all!! I called my insurance company to get it going, they inform me of what this is going to cost me...
-Children's with special needs insurance doesn't cover the Omnipod. We pay them $95 a month. So now all they will be covering is her vial of insulin, after blue cross blue shield of course, and anything that would be left over from a hospital visit.
-Our monthly fees after BCBS pays their part is around $100.
-Even better news is that we have to meet her $2,000 deductible every year before they'll pay for anything.
-Initial copay is around $1400.
We are talking around $5,000 a year just for these fees, that doesn't include Dr. visits and all the extra expense of food and supplies.
Yikes, I don't know what to do, I don't want to put a price tag on my daughter's health but YIKES, I don't know if I can do that!!
Would she hate the Omnipod, would it bother her when she was wearing her swimsuit, dresses, jeans...who knows.
We have much soul searching to do!!
So at the opt I asked for a nurse to come up and actually insert the catheter of the Omnipod into her, big mistake!! This lady had no idea what she was doing!! Tim and I told her we wanted it to be inserted in her tummy, I also told her I wanted to pinch the site while it was being inserted. She put it on her, Tim and I told her we think it's backwards, she assured us it wasn't. Click, it was inserted and then Olivia started screaming and crying, "take it out, take it out it hurts, it hurts" sure as sh*t this lady put it on wrong and it was very close to Olivia's hip bone, we took it out at once!! I was not very happy, the nurse disappeared she must of known that I was going to kill her!!
I bribe Olivia with a trip to Target to have the normal site put in for her mandatory 3 days of wearing a dummy pump. She cried and cried but there was no place to run, so I held her while the lady did it. (Flash back to holding her down while they were giving her her first shot) She was crying, I was crying...why does this have to be her life.
She wouldn't even walk, she cryed all the way to Target, but cheered up as she was picking out her toy. People stared...I don't like this very much. Yes, she is hooked to something, it's now very visual that she is not normal, there is something wrong with her. Life sucks.
The next three days was a roller coaster ride from hell. The pump is very hard to be hooked to while getting dressed and going to the bathroom. It's not really meant for summer dresses and swimsuits.
We decided this wasn't for us, maybe we would be going with the Omnipod after all!! I called my insurance company to get it going, they inform me of what this is going to cost me...
-Children's with special needs insurance doesn't cover the Omnipod. We pay them $95 a month. So now all they will be covering is her vial of insulin, after blue cross blue shield of course, and anything that would be left over from a hospital visit.
-Our monthly fees after BCBS pays their part is around $100.
-Even better news is that we have to meet her $2,000 deductible every year before they'll pay for anything.
-Initial copay is around $1400.
We are talking around $5,000 a year just for these fees, that doesn't include Dr. visits and all the extra expense of food and supplies.
Yikes, I don't know what to do, I don't want to put a price tag on my daughter's health but YIKES, I don't know if I can do that!!
Would she hate the Omnipod, would it bother her when she was wearing her swimsuit, dresses, jeans...who knows.
We have much soul searching to do!!
Thursday, June 4, 2009
Summer Camps
So I got a sheet home for a Girl Scout camp that I know Olivia would love, the only problem is how could she go!! This camp is about American girls and they're going to be cooking, putting on plays, swimming and doing arts and crafts. Now if Olivia didn't have diabetes it would be a no brainer, she'd totally be there, but she does and I'm left with...how could she, and should I even let her try!! It sucks, I know she'll miss out on stuff like this because there just won't be anyone there to care for her, and I don't think I can devote the whole week to going to camp with her, who would watch all the boys?? It's just a bummer!! I'm really going to search out a high school age girl that has type 1, and make her my babysitter, then I could pay her to go to camp with Livy!! Anyways I'm going to call the Girl Scout people and see if there is anything we can do, I just needed to vent a little....thanks!!!
Tuesday, June 2, 2009
Tonights dinner
BS=86 No correction
Dinner to insulin ratio= 1 unit for every 18 carbs
Dinner: Salad= 1.26
Chicken=0
Dressing=5
Cheese=.28
Strawberrie=10.93
Blueberries=7.43
Soy milk=10
Grand Total= 34.9 carbs = 1.94
Total units given= 2 units of novolog
Just try to do this for one meal!! There is this lady that I talk to on facebook, she has four kids and they all have type 1, can't imagine!!
Dinner to insulin ratio= 1 unit for every 18 carbs
Dinner: Salad= 1.26
Chicken=0
Dressing=5
Cheese=.28
Strawberrie=10.93
Blueberries=7.43
Soy milk=10
Grand Total= 34.9 carbs = 1.94
Total units given= 2 units of novolog
Just try to do this for one meal!! There is this lady that I talk to on facebook, she has four kids and they all have type 1, can't imagine!!
The aftermath
So I think the depression of the 9.0 is sinking in, I know it shouldn't be, but it is. I know it's okay, I know we're heading in the right direction, but dang.....9.0!!
It just sucks!! It sucks that she just can't eat when she's hungry, it sucks that we just can't say let's go get ice cream, it sucks that we spend so much of our family meal time weighing, measuring and discussing, it sucks that this is forever, it sucks that there is no day off....I could go on forever!! It just plain sucks!!
I'm blessed that she's here, I'm blessed that she can live with this disease, I'm blessed that she can still participate in everything all the other kids can, I'm blessed that she can walk and talk!! I'm blessed that she's here with me, that she's my daughter!!
So while I feel like complaining about this at the moment, it's okay!! I need to just vent and then put one foot in front of the other and keep moving on!! This is the life I have been given, it's not a terrible one by any means, I have a great husband and four great kids, and one little challenge to overcome daily...no biggie!! I think maybe I'm at complete peace with it, but then I think of her as a young adult and her doing it on her own, trying to have kids, trying to follow the strictness of food regimens and just coping with the everyday battles! I wish I could control this disease for her for the rest of her life, but I can't!
Now I'm off to make dinner..to measure and weigh :)
It just sucks!! It sucks that she just can't eat when she's hungry, it sucks that we just can't say let's go get ice cream, it sucks that we spend so much of our family meal time weighing, measuring and discussing, it sucks that this is forever, it sucks that there is no day off....I could go on forever!! It just plain sucks!!
I'm blessed that she's here, I'm blessed that she can live with this disease, I'm blessed that she can still participate in everything all the other kids can, I'm blessed that she can walk and talk!! I'm blessed that she's here with me, that she's my daughter!!
So while I feel like complaining about this at the moment, it's okay!! I need to just vent and then put one foot in front of the other and keep moving on!! This is the life I have been given, it's not a terrible one by any means, I have a great husband and four great kids, and one little challenge to overcome daily...no biggie!! I think maybe I'm at complete peace with it, but then I think of her as a young adult and her doing it on her own, trying to have kids, trying to follow the strictness of food regimens and just coping with the everyday battles! I wish I could control this disease for her for the rest of her life, but I can't!
Now I'm off to make dinner..to measure and weigh :)
Monday, June 1, 2009
The dreaded number is 9
So it's not exactly what I was hoping for, but she did go down from 9.4 to 9.0. I have to be honest it was yet another slap in the face!! I'm glad she's going down, I just wish she went down a little more!! I'm trying not to beat myself up too much over this, we're going in the right direction, we've only now really learned the skills necessary to keep her under tight control!! I remind myself often that we could of spent her whole life with her old Dr. and we would probably never ever see great numbers like we will see in the near future!! I wish I hadn't spent the past almost 2 years following this guy, but there's nothing I can do about it now except be thankful that I am no longer with him!
We went to our third class and learned so much more, we now have 2, 3 and 4 hour BS (blood sugar) goals and different carb to insulin ratio's for breakfast, lunch and dinner! Breakfast she is 11 carbs for 1 unit of insulin, lunch is 22 carbs for every unit, and dinner is 18 carbs for every unit!! For her BS's her 2 hour goal (2 hours after insulin is given) is 200, 3 hour is 180 and 4 hour is 150, her correction is 1 unit for every 120 over. So if 4 hours after insulin was given and her BS was 195, she would be 45 over her target..you would divide the 45 into the 120 which = 0.37, and lets say it's lunch time and she's having 39 carbs for lunch..you then take her lunch ration which is 1 to 22, divide 39 by 22 = 1.77. Then you add the two together..0.37+1.77=2.14, so she would get 2 units of insulin. It's a lot of math, and I now always have a calculator with me!! So at every meal you will see Tim and I talking about the math, trying to count the carbs, weighing her food and discussing if we are right or wrong!! When she has a really high number it puts us both in a very somber mood, it's hard to have a great dinner when your stressing over what kind of error you've made!
Tim would kill me for posting about this, but it's life we all make mistakes!! The other night she was high before bed, so Tim had given her a correction dose. He miscalculated it and over dosed her by a unit. We didn't realize this until I tested her BS at 11:00 and she was63, Tim quickly ran downstairs to get her a snack. He felt soo awful, but these things are very easy to do when your just learning all this! She of course was fine, Tim on the other hand was pretty shaken up!
We're still learning and looking forward to the June 11th pump class, we will probably be ordering our pump that day. In some ways we're not 100% ready for it, we would love to master these skills before we move on, but since we are about 1 year into bad A1C's it's really the right move to make!!
Keep Olivia in your thoughts and prayers as we move on with this next journey, I know it will be a hard one!!
We went to our third class and learned so much more, we now have 2, 3 and 4 hour BS (blood sugar) goals and different carb to insulin ratio's for breakfast, lunch and dinner! Breakfast she is 11 carbs for 1 unit of insulin, lunch is 22 carbs for every unit, and dinner is 18 carbs for every unit!! For her BS's her 2 hour goal (2 hours after insulin is given) is 200, 3 hour is 180 and 4 hour is 150, her correction is 1 unit for every 120 over. So if 4 hours after insulin was given and her BS was 195, she would be 45 over her target..you would divide the 45 into the 120 which = 0.37, and lets say it's lunch time and she's having 39 carbs for lunch..you then take her lunch ration which is 1 to 22, divide 39 by 22 = 1.77. Then you add the two together..0.37+1.77=2.14, so she would get 2 units of insulin. It's a lot of math, and I now always have a calculator with me!! So at every meal you will see Tim and I talking about the math, trying to count the carbs, weighing her food and discussing if we are right or wrong!! When she has a really high number it puts us both in a very somber mood, it's hard to have a great dinner when your stressing over what kind of error you've made!
Tim would kill me for posting about this, but it's life we all make mistakes!! The other night she was high before bed, so Tim had given her a correction dose. He miscalculated it and over dosed her by a unit. We didn't realize this until I tested her BS at 11:00 and she was63, Tim quickly ran downstairs to get her a snack. He felt soo awful, but these things are very easy to do when your just learning all this! She of course was fine, Tim on the other hand was pretty shaken up!
We're still learning and looking forward to the June 11th pump class, we will probably be ordering our pump that day. In some ways we're not 100% ready for it, we would love to master these skills before we move on, but since we are about 1 year into bad A1C's it's really the right move to make!!
Keep Olivia in your thoughts and prayers as we move on with this next journey, I know it will be a hard one!!
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