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.
Friday, December 16, 2011
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.
Monday, December 5, 2011
Whole Foods
I cried today at Whole Foods. I didn't mean for it to happen and I wasn't prepared for it. I had been told that if Levi eats more than 10g of carbs in one sitting, he will need an insulin shot. I don't want to chase him all day giving shots but he'll probably get sick of cheese/salami pretty soon. Yes, I know about nuts etc but I thought Whole Foods will have some good low-carb options. I walked the aisles but there is just so much at that store so I asked for help. First person, no idea. She called an "expert" to help me. He walked me down the chip/pretzel aisle and then said he had no idea if they had anything low carb. He walked me over to the manager and they said "we sell protein bars". I said "I have a 2 year old who is diabetic and I'm looking for any possible low card snacks". He replied "we don't really cater to diabetics". Umm, I wasn't asking you to cater to me. "You should just go to Luckys". Lucky's is our local cheap grocery store. I don't know why but I just started to cry. Why should it be so difficult? Everything is hard. Tomorrow will be two weeks from our diagnosis day and I feel just as bad as I did then.
Saturday, December 3, 2011
Overwhelmed at LPCH (Lucille Packard Children's Hospital)
The morning after our diagnosis is a complete blur. I remember we needed to be there at 10 but I can't remember our morning. I remember not knowing what to feed him and I remember that I cried on and off through the night and I really didn't get any sleep. The only thing I knew about diabetes was that they needed to eat a special diet, they could lose a limb and they were prone to blindness. I'm the first to admit that I knew nothing and I feared everything. I kept looking at my little happy guy and wondering why him. Plus it didn't help that once again, I couldn't stop crying. I'm not ashamed to admit that if anyone talked to me, I just cried. I cried at Admissions and I cried when we met our new doctor. I was told we would have an entire team assigned to Levi.
Before we met our doctors, they needed to do the basics with Levi - weigh him, blood pressure, etc. To other kids this might not have been a big deal but Levi has had a fear of the scale since birth. No idea why but nothing makes him scream like having to get weighed. They finally managed to get his weight and he was 12.1 kilos or 26 pounds. 4 months earlier, when he turned 2, he weighed 26 lbs, 3 oz. How did I miss that he lost weight in 4 months? I felt like a failure at that moment. I knew he was skinny but his older brother has the same frame and I didn't think anything of it.
Dr. Kumar, a fellow at Stanford, came and introduced himself. We are going to have a social worker, dietician, nutritionist, diabetes educator and a pediatric endocrinologist on our team. Wow. I was still wrapping my head around how serious this was. I think I wanted to be in denial and I wanted it all to go away. Who wouldn't? No one wants anything wrong with their child. No one wants their child poked and prodded and made to cry.
They taught us to administer insulin, check blood glucose levels and basically educate us until my eyes glazed over. I don't think I caught anything in the last hour. I was so exhausted, so emotionally drained and just so sad. I just cried off and on. I had called my own dad during a break at the lab and when I told him that Levi was going to be ok, he cried. When your own dad cries, it's just tough to handle. I had forgotten that as much as I was upset, all of our family was also upset and trying to deal with it. Everything about our life had to change, willing or not.
I'm someone that would probably be described as a chatty-cathy, quick to laugh and have a good time and generally open with people. I have my flaws but somehow I still have managed to have some really good friends. I don't like to ask for help. I will always offer help but I'd rather give it than receive it. There were three friends that I talked to often during these days. I just cried while talking to them. And it was ok. They let me cry. I will be forever grateful to them for that. My eyes tear up now thinking of it. It is only 1 week later but I realize how devastating it was and how I really needed someone to just let me cry without judging me or without gossiping about me. That helped.
Before we met our doctors, they needed to do the basics with Levi - weigh him, blood pressure, etc. To other kids this might not have been a big deal but Levi has had a fear of the scale since birth. No idea why but nothing makes him scream like having to get weighed. They finally managed to get his weight and he was 12.1 kilos or 26 pounds. 4 months earlier, when he turned 2, he weighed 26 lbs, 3 oz. How did I miss that he lost weight in 4 months? I felt like a failure at that moment. I knew he was skinny but his older brother has the same frame and I didn't think anything of it.
Dr. Kumar, a fellow at Stanford, came and introduced himself. We are going to have a social worker, dietician, nutritionist, diabetes educator and a pediatric endocrinologist on our team. Wow. I was still wrapping my head around how serious this was. I think I wanted to be in denial and I wanted it all to go away. Who wouldn't? No one wants anything wrong with their child. No one wants their child poked and prodded and made to cry.
They taught us to administer insulin, check blood glucose levels and basically educate us until my eyes glazed over. I don't think I caught anything in the last hour. I was so exhausted, so emotionally drained and just so sad. I just cried off and on. I had called my own dad during a break at the lab and when I told him that Levi was going to be ok, he cried. When your own dad cries, it's just tough to handle. I had forgotten that as much as I was upset, all of our family was also upset and trying to deal with it. Everything about our life had to change, willing or not.
I'm someone that would probably be described as a chatty-cathy, quick to laugh and have a good time and generally open with people. I have my flaws but somehow I still have managed to have some really good friends. I don't like to ask for help. I will always offer help but I'd rather give it than receive it. There were three friends that I talked to often during these days. I just cried while talking to them. And it was ok. They let me cry. I will be forever grateful to them for that. My eyes tear up now thinking of it. It is only 1 week later but I realize how devastating it was and how I really needed someone to just let me cry without judging me or without gossiping about me. That helped.
Day of Diagnosis
Tuesday, November 22, 2011, our entire life changed. That sounds so dramatic but right now, whenever I think of something it is either before or after that day. I still don't know why I decided to call our pediatrician. Maybe it was mother's intuition or maybe it was comments from my family but I decided to call and I left a message. The only sign I had was that Levi was drinking a TON and his diaper was leaking during the day. That never really happened. I left a message saying maybe it was a growth spurt but something seemed wrong. An hour later I was standing outside my kinder's classroom, waiting for him to get out for the day, and the nurse called me. They wanted to see me right away with the alternate pediatrician. I wanted to wait for mine but they said he wasn't available until end of day and they needed to see me right away. I dropped my two older ones off at my aunts house and off we went.
They put a bag on Levi and within a few minutes, he had pee'd enough to get a sample. I had convinced myself nothing was wrong. My regular pediatrician has a booming voice and I heard the nurse knock on the door of the room next to me. They said they needed to see him. A few minutes later I heard him say "Get Stanford on the line and tell Dr. M that I will handle this". I knew right then that Levi had diabetes. Dr. C walked into my room and I just immediately started crying. I think this really threw him for a loop :) He told me that yes, Levi had diabetes but that he was going to be ok. He told me to call my husband and he needed to come home from work. I moved into another room while Dr. C tried to get ahold of Stanford. We were told we needed to head to Stanford (Lucille Packard's Childrens Hospital) and go straight to the emergency room where they would be expecting us. In addition to worrying about Levi, I had two other children to consider. Sometimes the older ones get a bit lost which is just as worrying to me.
We raced to Stanford and we were admitted immediately to a room in the ER. We saw numerous nurses, three doctors, and of course the billing person. $250 for the visit. Ouch. I was definitely impressed with Stanford but there's no changing the fact that Levi screamed during the visit. They needed to take blood which was a complete nightmare and then administer his first dose of insulin - right into his tummy. We had to told him down and it was just awful. Stanford confirmed his diagnosis and basically sent us home. We needed to return the next day for a marathon learning day.
I couldn't stop crying. I cried driving there, I cried through admissions and every time a doctor/nurse talked to me, I cried. Maybe others can be more stoic, but for me, I just cried. I cried for Levi, I cried out of fear and I cried out of sheer exhaustion. Just contemplating his disease was overwhelming to me.
They put a bag on Levi and within a few minutes, he had pee'd enough to get a sample. I had convinced myself nothing was wrong. My regular pediatrician has a booming voice and I heard the nurse knock on the door of the room next to me. They said they needed to see him. A few minutes later I heard him say "Get Stanford on the line and tell Dr. M that I will handle this". I knew right then that Levi had diabetes. Dr. C walked into my room and I just immediately started crying. I think this really threw him for a loop :) He told me that yes, Levi had diabetes but that he was going to be ok. He told me to call my husband and he needed to come home from work. I moved into another room while Dr. C tried to get ahold of Stanford. We were told we needed to head to Stanford (Lucille Packard's Childrens Hospital) and go straight to the emergency room where they would be expecting us. In addition to worrying about Levi, I had two other children to consider. Sometimes the older ones get a bit lost which is just as worrying to me.
We raced to Stanford and we were admitted immediately to a room in the ER. We saw numerous nurses, three doctors, and of course the billing person. $250 for the visit. Ouch. I was definitely impressed with Stanford but there's no changing the fact that Levi screamed during the visit. They needed to take blood which was a complete nightmare and then administer his first dose of insulin - right into his tummy. We had to told him down and it was just awful. Stanford confirmed his diagnosis and basically sent us home. We needed to return the next day for a marathon learning day.
I couldn't stop crying. I cried driving there, I cried through admissions and every time a doctor/nurse talked to me, I cried. Maybe others can be more stoic, but for me, I just cried. I cried for Levi, I cried out of fear and I cried out of sheer exhaustion. Just contemplating his disease was overwhelming to me.
A little about us..
It has been 11 days since my youngest son was diagnosed with Type 1 Diabetes, also known as Juvenile Diabetes. It didn't take very long to realize that although many other families have walked this path, there isn't a lot of support/knowledge and I have felt really lost. I'm writing this blog to share every step of our journey, in the hopes of maybe helping another family. Feeling alone with a disease is just another hurdle to conquer.
Levi is our youngest and only 2 years, 4 months. We also have a 4 and 5 year old so needless to say, we have always been busy. We are your typical Suburban family. My husband works long hours at a start up in Silicon Valley and I am lucky enough to be a stay at home mom. I don't know how working parents are able to handle this disease as I can barely handle it and I don't have to worry about a job.
I've always felt so lucky with my kids. Even though I'm busy, I never had to deal with "real worries". I didn't have a special needs child, my kids were basically well behaved and truth be told, we were skating through life. How quickly that can change. My biggest worry went from "what will I make my kinder for lunch?" to "will my child die in his bed?" Big change for us.
We are on day 11 of this journey. I have a LOT to learn, a lot of fears and I hope that my mistakes and my experience with this might help someone else. If nothing else, you know that you aren't alone.
Levi is our youngest and only 2 years, 4 months. We also have a 4 and 5 year old so needless to say, we have always been busy. We are your typical Suburban family. My husband works long hours at a start up in Silicon Valley and I am lucky enough to be a stay at home mom. I don't know how working parents are able to handle this disease as I can barely handle it and I don't have to worry about a job.
I've always felt so lucky with my kids. Even though I'm busy, I never had to deal with "real worries". I didn't have a special needs child, my kids were basically well behaved and truth be told, we were skating through life. How quickly that can change. My biggest worry went from "what will I make my kinder for lunch?" to "will my child die in his bed?" Big change for us.
We are on day 11 of this journey. I have a LOT to learn, a lot of fears and I hope that my mistakes and my experience with this might help someone else. If nothing else, you know that you aren't alone.
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