Diabetes decided that it wasn't taking up enough of our time. It wanted us to spend 2 1/2 hours on Monday with the doctor and another 3 hours today. Kudos to Levi who is learning to play with his trains on the floor and totally disregard the adults.
All I can say is ouch. Today was the day we learned about the insulin pump. The pump would be attached to Levi and "feed" him his insulin directly into the fat beneath his skin. He would wear the pump on a belt and then there would be a tube into his bum. Stanford won't allow you to move forward with the pump until you wear it yourself. Dave went first. It wasn't pretty. I have to admit that I was rolling with laughter after Dave nearly assaulted the lady when she inserted the needle. But then it was my turn. I was thinking to myself, "how hard can this be? I've given birth". DAMN. It's 2 hours later and I think I still feel it. First of all, it's not a shot. I think they tried to insert a damn knitting needle into my stomach. I yelled ouch. Then they told me that once it was in, I wouldn't feel it anymore. I felt it. I felt it for every second until the removed it. Ummm, I don't see this working out for us. Call me a wimp. I'm actually bruised where it went in and I have a small bloody red spot from it. So please, explain to me again how I'm going to do this to Levi every 3 days? Ummm, again, I don't see that happening.
Thanks for the class Stanford. I think I'll continue with the daily regimen of 4 shots. Otherwise, I think I would need to take a valium every 3 days. Nope, not gonna happen.
Wednesday, January 25, 2012
Sunday, January 22, 2012
2 months today
Hard to believe it's been 2 months as of today because it feels like so much longer. Diabetes has been so tiring and so darn relentless. It never gives us a break and if we relax with it at all, it strikes back with a vengeance. Damn diabetes. I don't hate many things in my life but I can say with total confidence that I hate diabetes.
Paula Deen is not helping our cause. Everyone is criticizing her for the way she cooks and with her recent annoucetment of having diabetes, it just doesn't help. It's already bad enough that everyone thinks that diabetes is a lifestyle disease. Diabetes 2 is. But Levi DOESN'T HAVE DIABETES 2. He has Diabetes 1. Juvenile Diabetes. No, I didn't feed him juice/coke from birth. Nope, he's not overweight and I didn't stuff him full of sugar. No, I didn't do this to him and No, he didn't have this from birth. I didn't overlook it. We did not cause this.
I went out to lunch with a childhood friend, someone who does care, and I realized how little information there is on diabetes 1. It is an autoimmune disease. They don't know how one gets it and there is no cure. He will have this his entire life unless a cure is found. He has to manage this always and we don't get a break from it. As much as we will try and minimize diabetes, it will always be lurking in the background. I've had a few postings on facebook and I realized that most people don't have a clue what I'm talking about. If I was in their shoes, I totally understand that I wouldn't know either. I don't blame them but I realize that we are alone in this. Of course there are other families dealing with it, and maybe dealing with it better than we are, but in reality it's just our family.
I went to a MOPS mom's group and the subject was patience. I need to have patience with others. I need to have patience with myself as I am still learning. We head back to Lucille Packard children's hospital tomorrow and I have quite the list of questions.
But today is also a day of celebration. We have come so far and we will not let diabetes define Levi. We have continued to do fun family things and more importantly, he is not only alive, but he is thriving.
Paula Deen is not helping our cause. Everyone is criticizing her for the way she cooks and with her recent annoucetment of having diabetes, it just doesn't help. It's already bad enough that everyone thinks that diabetes is a lifestyle disease. Diabetes 2 is. But Levi DOESN'T HAVE DIABETES 2. He has Diabetes 1. Juvenile Diabetes. No, I didn't feed him juice/coke from birth. Nope, he's not overweight and I didn't stuff him full of sugar. No, I didn't do this to him and No, he didn't have this from birth. I didn't overlook it. We did not cause this.
I went out to lunch with a childhood friend, someone who does care, and I realized how little information there is on diabetes 1. It is an autoimmune disease. They don't know how one gets it and there is no cure. He will have this his entire life unless a cure is found. He has to manage this always and we don't get a break from it. As much as we will try and minimize diabetes, it will always be lurking in the background. I've had a few postings on facebook and I realized that most people don't have a clue what I'm talking about. If I was in their shoes, I totally understand that I wouldn't know either. I don't blame them but I realize that we are alone in this. Of course there are other families dealing with it, and maybe dealing with it better than we are, but in reality it's just our family.
I went to a MOPS mom's group and the subject was patience. I need to have patience with others. I need to have patience with myself as I am still learning. We head back to Lucille Packard children's hospital tomorrow and I have quite the list of questions.
Sunday, January 15, 2012
Battling the lows
My husband went away this weekend for the first time in a long time. It's been fairly stressful lately so it was good that at least one of us had a breather. On Saturday morning I took all three kids to the park with some friends. We were there about 2 hours and Levi came up and said "food". He'd been playing pretty hard so I decided to test him. He was 45! Normal range for regular kids is 70-120. Usually Levi is around 150 during the day. Going this low taught me a lesson. I wasn't really prepared. I had 3 hershey kisses with me and 1/2 of his apple from the morning. I totally forgot that I had a juice box in the car. I got his sugars up but he went low throughout the day. It was the first time that my mom babysat. I had a princess party for my 4 year old. He went low for her and she panicked. It's like the blind leading the blind around here. I checked him at 9:00 pm too after he had been asleep for a few hours. He was 62 so I gave him juice. He loved that! Thankfully his numbers went up and I only checked him at 11 pm and 3 am. I feel like I have a newborn again.
On a more positive note, in the last 2 days, there have been 3 times that Levi did not cry when he got his shots. What a relief! I hated having to hold him down while he cried. Nothing tears at your heart like hurting your child. I HATED IT. We went out to Japanese food and after we ate, he just stood on his chair and let us give him both shots. I was so proud of him. I'm thinking of starting some kind of reward chart for him. I still worry every moment. I wake up thinking of diabetes and I go to bed thinking about it. I hate diabetes.
On a more positive note, in the last 2 days, there have been 3 times that Levi did not cry when he got his shots. What a relief! I hated having to hold him down while he cried. Nothing tears at your heart like hurting your child. I HATED IT. We went out to Japanese food and after we ate, he just stood on his chair and let us give him both shots. I was so proud of him. I'm thinking of starting some kind of reward chart for him. I still worry every moment. I wake up thinking of diabetes and I go to bed thinking about it. I hate diabetes.
Monday, January 2, 2012
My new years resolution
It's day two of the new year and I've been wanting to post, but just unsure of what to write. I've joined some support groups and online yahoo groups. It can be so overwhelming to hear about CGM, pumps, bolusing etc. I don't even know what they mean yet. People write about their worries/concerns and I don't even know what they are talking about. It is as if there is an entire world of diabetes to be worried about, but I haven't learned enough to worry about it yet.
I'm still sleeping in Levi's room. I'm still worried every morning if he will wake up. I worry about his blood glucose levels all day long. Now that he has stopped crying when I check his blood sugar, I find myself checking it much more often. When his daddy goes to check him, Levi now cries for me to do it. That's just another added stress. I read a post from another mom that said "reduce stress". I'm going to take that to heart.
Usually my new years resolution is the exact same thing. Lose those last 5-10 pounds. Not this year. This year my resolution, although copied from someone else, is to reduce stress. I always want my house neat and everything in order and in all honestly, I can't do it. My brain can't keep up. I worry about Levi all day long. I just don't have the energy to worry about too much else. When asked to volunteer, I won't say yes unless I can do it without stressing. No more. And I can't worry about what others think. I can't worry about what the other moms on the playground at school are saying about me. I can only worry about my three children. They are growing up so fast and I'm going to cherish it.
No more.
I'm still sleeping in Levi's room. I'm still worried every morning if he will wake up. I worry about his blood glucose levels all day long. Now that he has stopped crying when I check his blood sugar, I find myself checking it much more often. When his daddy goes to check him, Levi now cries for me to do it. That's just another added stress. I read a post from another mom that said "reduce stress". I'm going to take that to heart.
Usually my new years resolution is the exact same thing. Lose those last 5-10 pounds. Not this year. This year my resolution, although copied from someone else, is to reduce stress. I always want my house neat and everything in order and in all honestly, I can't do it. My brain can't keep up. I worry about Levi all day long. I just don't have the energy to worry about too much else. When asked to volunteer, I won't say yes unless I can do it without stressing. No more. And I can't worry about what others think. I can't worry about what the other moms on the playground at school are saying about me. I can only worry about my three children. They are growing up so fast and I'm going to cherish it.
No more.
Friday, December 16, 2011
Early Start
A few months ago I contacted Early Start because I felt Levi wasn't talking as well as he should be. He's very difficult to understand and I'm always translating for him. They finally came out this week to do a full evaluation on him. Now that he has diabetes, I feel like I need to get him talking! I need to know if he doesn't feel well or if his tummy aches. They tested him for over an hour and he does qualify for services. It's kind of a mixed feeling. On one hand, I'm glad he will get the help that he needs. But on the otherhand, he needed to be in the bottom 33% to qualify so I wish he wasn't.
I wish I could just hug him and hold him tight. I wish diabetes never came into our lives. I wish he didn't need speech therapy. It's just one more thing that takes away from his play time. He is such a happy little guy. Don't you wish you could just wave your magic wand and make it all better?
Yesterday Levi's numbers were all over the board. I'm learning that I need to be much better at counting carbs. I counted his carbs with dinner and then gave him his shot. My older son had cub scouts last night and I needed to provide cookies for the meeting. I couldn't not give one to Levi! And I didn't have the heart to give him another shot. At bedtime his numbers were in the 300s. I realized that I need to be stronger. That's an area I'm clearly struggling with. Shots are still so traumatic for us. He cries so hard and I have to hold him down. I finally got off my arse and filled out the pump paperwork and sent it to Medtronic. I might as well start the ball going.
I feel so behind on everything. Things are slipping through the cracks. I haven't been working with my kinder on his work, we haven't been doing all the fun xmas stuff and in general, I feel like diabetes has taken over our life. Maybe my new year's resolution will be to take our life back.
I wish I could just hug him and hold him tight. I wish diabetes never came into our lives. I wish he didn't need speech therapy. It's just one more thing that takes away from his play time. He is such a happy little guy. Don't you wish you could just wave your magic wand and make it all better?
Yesterday Levi's numbers were all over the board. I'm learning that I need to be much better at counting carbs. I counted his carbs with dinner and then gave him his shot. My older son had cub scouts last night and I needed to provide cookies for the meeting. I couldn't not give one to Levi! And I didn't have the heart to give him another shot. At bedtime his numbers were in the 300s. I realized that I need to be stronger. That's an area I'm clearly struggling with. Shots are still so traumatic for us. He cries so hard and I have to hold him down. I finally got off my arse and filled out the pump paperwork and sent it to Medtronic. I might as well start the ball going.
I feel so behind on everything. Things are slipping through the cracks. I haven't been working with my kinder on his work, we haven't been doing all the fun xmas stuff and in general, I feel like diabetes has taken over our life. Maybe my new year's resolution will be to take our life back.
Monday, December 12, 2011
Sucks for them, sucks for me.
Even though the last few weeks have been crazy, there has been a certain amount of blissful ignorance on my part. When I've heard other's stories of worry/trouble, I've had a tendency to think "that really sucks for you." Um, what about me? Is there a reason that I hadn't yet made the connection that yes, it sucks for those people. But, I'm not special or different. It's going to suck for me too.
Levi has had a cold for a few days. After he woke up from his nap, he wouldn't stop crying. He was lethargic on the couch and inconsolable. Of course this is right at dinner time and right when my two older kids want attention. Nothing is ever easy.
I decided to break out the new meter and check for ketones. I've heard some horror stories about these darn ketones! Sure enough, his levels were at .7. Anything .6 and over requires a call to Stanford. I had the pediatric endocrinologist paged and told my husband to cancel his plans for the evening. There's nothing worse for me than not knowing what I'm doing or what I'm supposed to do.
We were told that we would need to check his blood glucose levels and his ketones every 2 hours throughout the night. Considering Levi wakes up and cries each time, this is going to be painful. It's so hard to get him back to sleep and then I just lay there, worrying. I find myself checking to make sure he's breathing through the night. I remember doing that when my kiddos were first born. I never thought I'd be doing it again.
At the next check, his blood sugar levels had spiked but the ketones were down to .2 which I thought was great. We gave him an insulin shot to help his body get some energy and we put him to bed. Only 25 more minutes and we check him again.
My new reality is stressful. I feel a physical load upon my shoulders. Diabetes is the first thing I think of when I wake up and when I go to bed. I am constantly thinking what I'm going to make for meals, how many carbs it is, how much insulin in the shots, etc. I am grateful for the parents who have walked this path before me. I have so much to learn.
Levi has had a cold for a few days. After he woke up from his nap, he wouldn't stop crying. He was lethargic on the couch and inconsolable. Of course this is right at dinner time and right when my two older kids want attention. Nothing is ever easy.
I decided to break out the new meter and check for ketones. I've heard some horror stories about these darn ketones! Sure enough, his levels were at .7. Anything .6 and over requires a call to Stanford. I had the pediatric endocrinologist paged and told my husband to cancel his plans for the evening. There's nothing worse for me than not knowing what I'm doing or what I'm supposed to do.
We were told that we would need to check his blood glucose levels and his ketones every 2 hours throughout the night. Considering Levi wakes up and cries each time, this is going to be painful. It's so hard to get him back to sleep and then I just lay there, worrying. I find myself checking to make sure he's breathing through the night. I remember doing that when my kiddos were first born. I never thought I'd be doing it again.
At the next check, his blood sugar levels had spiked but the ketones were down to .2 which I thought was great. We gave him an insulin shot to help his body get some energy and we put him to bed. Only 25 more minutes and we check him again.
My new reality is stressful. I feel a physical load upon my shoulders. Diabetes is the first thing I think of when I wake up and when I go to bed. I am constantly thinking what I'm going to make for meals, how many carbs it is, how much insulin in the shots, etc. I am grateful for the parents who have walked this path before me. I have so much to learn.
Friday, December 9, 2011
"Little Carbs"
I went to my first playdate "support group" today. Another mom has started a non-profit called Carb DM and they were kind enough to have a playdate about 45 minutes away. I have been feeling so angry, so unable to talk to others and in such a general bad mood that I thought it would be helpful to go. I don't like feeling like this but I can't seem to shake it.
The first mom I met welcomed me so warmly but it is always nerve-wracking walking into a new social situation. The second mom walked in with a 4 1/2 year old and a newborn and just asked me how I was. A simple enough question right? I said ok but I started to cry. I feel like I can't answer truthfully when asked by regular people. I'm sure people care but in my head, I know that most can't understand. This mom, whom I have never met, walked over to me and gave me the warmest hug. Who does that? I needed it though, very badly. I spent the next two hours with three women who started as strangers but by the end, I think I can call them friends. They got me. They took time to help me understand and answer all my questions. I admit I left with some new fears. Sometimes ignorance is bliss.
I'm on day 17 and I think I have conquered giving the insulin shots. I need help calculating carbs and sometimes I don't get enough blood on the first try to check the blood glucose. But I've come far. I've only had 1 day without tears but maybe those days will increase. Not today though.
The first mom I met welcomed me so warmly but it is always nerve-wracking walking into a new social situation. The second mom walked in with a 4 1/2 year old and a newborn and just asked me how I was. A simple enough question right? I said ok but I started to cry. I feel like I can't answer truthfully when asked by regular people. I'm sure people care but in my head, I know that most can't understand. This mom, whom I have never met, walked over to me and gave me the warmest hug. Who does that? I needed it though, very badly. I spent the next two hours with three women who started as strangers but by the end, I think I can call them friends. They got me. They took time to help me understand and answer all my questions. I admit I left with some new fears. Sometimes ignorance is bliss.
I'm on day 17 and I think I have conquered giving the insulin shots. I need help calculating carbs and sometimes I don't get enough blood on the first try to check the blood glucose. But I've come far. I've only had 1 day without tears but maybe those days will increase. Not today though.
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