Next week we are starting the process to put Emma on a pump. Its not going to be easy but we hope that it will make things a little easier for us in the long run. For one thing, she has some strange "times of day" that we cannot adjust for well with the regimen we have (namely her body wants to go low between 10pm and 2am each night, leading to a juice and protein snack in the bed with us).
The process is supposed to take 2-3 months but we are trying to do it as quickly as possible to eliminate a couple of these lows that we are currently experiencing. This week is "Pump Night". We go have an introduction / initial training with the Nurse and then we meet with the pump vendors. I think I've narrowed it down to 2 pumps that I want to look at. The Nurse said that she normally doesn't recommend a pump but she is going to in our case because Emma is so little and her doses are so small. The pump she is recommending is one of the two - so we will spend a lot of time looking at that one on Wednesday.
After we decide on a pump, it has to be ordered and processed through Insurance. I have made, oh, 5 calls to the insurance company to confirm exactly how and where we can get a pump. The bad news is that I kept getting conflicting information - which is what I expected and the reason I called 5 times. The good news is that the one consistent piece of information I DID get is that it is covered 100% with no co-pay. That is good news since these cost about $7500 and even a 10% co-pay wouldn't be cheap.
After the pump arrives, Mike and I each have to wear it for a couple of days. We wear it with simply a saline drip. This is so that we understand what it takes to use a pump - since we will be managing the pump 100% until Emma is old enough. After we each wear it, then Emma will wear it for a few days to get used to it while we still do injections. There are lots and lots of cute little pouches that they sell to hold insulin pumps on a belt so I'm going to get her a couple so she'll enjoy it a little more.
Then we start the insulin drip through the pump. On all accounts, I understand that what you go through to get it calibrated is as bad as when you were first dealing with the diagnosis. The doses are little/teeny and they can be administered almost as frequently as every 15 minutes, so you are coming up with a scheme that gives the right dose in each time frame all day and all night long. Lote more finger sticks while you are figuring it out. AND then hoping that your infusion site is good (or the insulin won't get in) and the tubing doesn't get kinked OR your child doesn't disconnect it (I'm hearing funny yet not funny stories of 3 and 4 year olds disconnecting their own pump because they think its funny)
But in the end we should be able to manage her reading much better. No injections and insulin on a better schedule that SHOULD keep her from some of the shooting highs and dropping lows that we have been experiencing recently. I'll keep you updated.
Saturday, August 4, 2007
Thursday, August 2, 2007
One of those days
I just don't always understand this disease. For the past few days, we have had to treat an overnight low. We typically give juice but we've been adding in some peanuts for protein - protein helps keep the blood sugar higher once you get it up.
Do you know how difficult it is to get a 2 year old to eat peanuts and drink juice at 10pm or midnight. Well, that's not tough - but then getting her back to sleep is.
But we had another low at dinner. I had checked her 3 hours after her snack today and she was normal. 45 minutes later when our pizza arrived, she was down at 57. That's 3 hours and 45 minutes after dosing and it should have all but been out of her system by then.
Its so difficult to manage when her body keeps doing this.
Next week we start the 2-3 month process of putting her on a pump. One of the great things that we look forward to getting from the pump is the ability to adjust her "baseline" dose throughout the day - higher for times she runs high and less for times of day that she runs low - the key will be just figuring out those exact times.
The other thing I'm going to discuss with the nurse is a Continuous Glucose Monitoring System. That won't completely eliminate the need for finger sticks, but it will greatly reduce them AND it will send alarms when she gets too HIGH or too low. This will be valuable while on the pump because if there is a problem with the pump and its not administering insulin, she's go up quickly so the pump will tell us. And if she has some of the unexplained lows, especially in the night time, it will tell us that too.
But gosh, for the first time with all three of our kids, we might actually have to get a baby monitor to put in her room for night. We have always just counted on hearing the kids fuss if they really need us at night but I think we'll need the monitor to hear the alarms!
Do you know how difficult it is to get a 2 year old to eat peanuts and drink juice at 10pm or midnight. Well, that's not tough - but then getting her back to sleep is.
But we had another low at dinner. I had checked her 3 hours after her snack today and she was normal. 45 minutes later when our pizza arrived, she was down at 57. That's 3 hours and 45 minutes after dosing and it should have all but been out of her system by then.
Its so difficult to manage when her body keeps doing this.
Next week we start the 2-3 month process of putting her on a pump. One of the great things that we look forward to getting from the pump is the ability to adjust her "baseline" dose throughout the day - higher for times she runs high and less for times of day that she runs low - the key will be just figuring out those exact times.
The other thing I'm going to discuss with the nurse is a Continuous Glucose Monitoring System. That won't completely eliminate the need for finger sticks, but it will greatly reduce them AND it will send alarms when she gets too HIGH or too low. This will be valuable while on the pump because if there is a problem with the pump and its not administering insulin, she's go up quickly so the pump will tell us. And if she has some of the unexplained lows, especially in the night time, it will tell us that too.
But gosh, for the first time with all three of our kids, we might actually have to get a baby monitor to put in her room for night. We have always just counted on hearing the kids fuss if they really need us at night but I think we'll need the monitor to hear the alarms!
Tuesday, July 31, 2007
I AM crazy
I have too much to do. I always have too much to do. I often wonder about those people who have blissful time of not much to do. Not me.
But I keep taking it on.
I am now the Recruitment Leader for the JDRF Capital Chapter. This is a fantastic opportunity for me. I'll be using some of the skills that I used when I worked and working with something that I am (now) passionate about.
I'll be working to help identify opportunities to get more "Advocates" on board - advocates being people who are willing to contact our Senators and Representatives regarding important Diabetes issues. I'll also be contacting the Congressional Representative offices covered by our chapter (8 of them - between MD, DC, and VA) to schedule meetings to discuss their support of important legislation. Right now, that is the Special Diabetes Program, a $150M program that is up for renewal next Spring. We are starting a campaign to contact 400 representatives through meetings in their home districts to discuss how diabetes has affected our families and to ask for their support. I have 8 to get scheduled and 1 to attend (my own district)
I am excited about this role and it is very important in the chapter and involved with Government Relations, all of which is exciting to me, but who knows when I'll find the time to do it all!
But I keep taking it on.
I am now the Recruitment Leader for the JDRF Capital Chapter. This is a fantastic opportunity for me. I'll be using some of the skills that I used when I worked and working with something that I am (now) passionate about.
I'll be working to help identify opportunities to get more "Advocates" on board - advocates being people who are willing to contact our Senators and Representatives regarding important Diabetes issues. I'll also be contacting the Congressional Representative offices covered by our chapter (8 of them - between MD, DC, and VA) to schedule meetings to discuss their support of important legislation. Right now, that is the Special Diabetes Program, a $150M program that is up for renewal next Spring. We are starting a campaign to contact 400 representatives through meetings in their home districts to discuss how diabetes has affected our families and to ask for their support. I have 8 to get scheduled and 1 to attend (my own district)
I am excited about this role and it is very important in the chapter and involved with Government Relations, all of which is exciting to me, but who knows when I'll find the time to do it all!
Monday, July 30, 2007
How God selects the mother of a diabetic
How God Selects the Mother of a Diabetic Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
Did you ever wonder how mothers of children with diabetes are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew." "Forrest, Marjorie, daughter, Patron Saint Cecilia." "Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity." Finally, He passes a name to an angel and smiles, "Give her a child with diabetes."
The angel is curious. "Why this one, God? She's so happy."
"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter? That would be cruel". "But has she the patience?" asks the angel.
"I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side. I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?" God nods. "If she cannot separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with less than perfect. She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone.
"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles.
"A mirror will suffice."
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
Did you ever wonder how mothers of children with diabetes are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew." "Forrest, Marjorie, daughter, Patron Saint Cecilia." "Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity." Finally, He passes a name to an angel and smiles, "Give her a child with diabetes."
The angel is curious. "Why this one, God? She's so happy."
"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter? That would be cruel". "But has she the patience?" asks the angel.
"I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side. I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?" God nods. "If she cannot separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with less than perfect. She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone.
"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles.
"A mirror will suffice."
Tuesday, July 17, 2007
Welcome to my diabetes blog
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.
I hope this is theraputic for me and helpful for someone else who might be experiencing diabetes with their little one.
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.
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