The Journey Of Diabetes Through A Mom's Eyes

The Doctors

2008-09-28T15:55:00.000-07:00

Anyone ever watch the T.V. show The Doctors? It's kind of new. The Doctors is just what it sounds like - it's a pannel of doctors that give information on various topics. Sometimes they even debate their views on different subjects. For more information, check out their page on CBS. I refuse to post a direct link, and below I will tell why.

It seems that on Spetember 29th, 2008 one of the doctors decided to tell a bunch of children that "they would get diabetes if they ate too much sugar". That is a total myth, and several parents at the Children with Diabetes forums were outraged. What did the parents over at CWD do? What they usually do.... They banded together, and wrote emails to the staff. No one got a reply, though....

The next step was to post to the blog over at The Doctors website. The posts were deleted...

The Doctors have messed up, but they are not letting their mistake become known to their fans, nor are they correcting their mistake. Will that be yet another mistake? I sure hope so.

Here's my plan. I say we find a media outlet, and get attention on the mistake from a source that The Doctors cannot delete, nor ignore. By doing this The Doctors cannot delete it, and they can no longer hide that they gave out misinformation to a bunch of elemenrty school students, and they will not get away with spreading the Myths that the parents of children with diabetes loath so much.

Stem Cell Research Immoral?

2008-07-18T10:03:00.000-07:00

Stem cell research is a debate that often explodes in any circle. These debates also happen in the diabetic community, even though stem cell research has a high potential to cure diabetes.

Of course, there are many things that go further than diabetes that will affect one's views on the subject, and everyone is entitled to their opinion.

I of course, am one of those liberal nuts who is pro choice, and also for stem cell research. Especially in the case of stem cells that will be discarded, because for whatever reason their owners no longer want or need them. I believe that it is a waste to discard those stem cells, rather then use them to save, or drastically improve a life. In fact, I believe it is immoral to not use them for this purpose.

2008-07-09T07:48:00.000-07:00

During my absence I started attending college classes through the University of Phoenix's online extension program, Axia College. This week we had to answer some questions about the topic we had chosen for our final project that is due at the end of the term. For this class we have to write an essay. I thought about doing type 1 as my topic, however I chose against it. I think I am too emotionally involved in the topic of type 1 to write a truly non biased essay, which is part of the deal, non bias that is.....
This assignment is one that we will post for the whole class to see (some of our assignments are part of class discussion, others are private between student and teacher) and then the class will discuss each other's work by agreeing, disagreeing, or asking further questions.
Anyhow, I was reading through other peoples posts. It's required that I respond to 2 of these posts, 3 separate days of the week. Guess what I found? Another parent of a CWD....
Of course I am now watching that discussion with great interest.... We had the grandfather story come up as a response with the remark about how amazing it is that diet can affect us in so many ways.... Yeah, you all know the one I am speaking about. I took deep breaths.... I counted down from 10, then 100. I paced back and fourth. I went into CWD chat and goofed off with other parents. It was approaching 11, and I needed to get this done before midnight, or it would not count for that day, and I needed it to count. I browsed other topics, thinking I could post to one of them instead, but the diabetes one was still on my mind. I had to write a post to these people, or the comments would continue to be about somebody's grandfather, another person's aunt, ect... This is what I posted.... I am just hoping I was diplomatic enough....

Unfortunately, (name removed for confidentiality) son, and my daughter will have to take insulin either through an injection, or a catheter that is placed under their skin, several times per day for the rest of their lives, or until another treatment, or a cure is found. Pills that currently exist are not an option, because they do not produce the right results to treat our children.
While we still have to pay attention to their diet, it isn't quite as easy as cutting out the junk. You would be amazed at what healthy foods effect a person's blood glucose levels in a bad way, and what kinds of junk foods are easier to manage in terms of keeping one's blood glucose levels in a normal range. Since carbohydrates are needed for a child to have normal growth and development, a child with diabetes presents many special challenges with regards to diet.
Almost everything our children do will effect their blood glucose levels, whether it be eating, exercising, or even the unforeseen such as; hormones, stress, and illness.

For more information on the differences between the two types the Juvenile Diabetes Research Foundation has a brochure on the subject that can be found here: http://www.jdrf.org.au/publications/factsheets/differences_between_type_1_and_type_2.pdf

Last post for a while

2008-03-08T19:40:00.000-08:00

Due to some issues I am having this will be my last post for a while.

I just wanted to say thank you to all of you that read the crap I write on here and have given me so much support.
Love to all, Jamie

Way to go Texas A&M

2008-02-23T16:40:00.000-08:00

Texas A&M is working on a new type of bg sensor.

I am not a fan of the current tech for CGMS. Though I am not sure how ready I would be to implant beads under Julia's skin either. I'm glad people are looking in other directions then the traditional "insert probe into skin" rather then continuing to try and improve that technology. Of course we have plenty of companies doing just that. That's not a bad thing, however I don't see how we are supposed to get better results when we know the issue with current CGMS is that results are delayed because the glucose concentration in the interstitial fluid is behind the current amount of blood glucose in the blood by 5-20 minutes.

We probably didn't give dex a fair shake when we tried it. It was only for a week, but the dang thing was never on target, or even within 20%. I'm glad we tried it before buying one because before that I really wanted CGMS. Julia also didn't like it, so I would never push for another go at it.

So even though there is at least 5 years to go minimum if the project that Texas A&M works, I am sooo hoping it pans out, and very glad that we have someone looking into another way.

Oh my....

2008-02-18T09:49:00.000-08:00

Part of being a parent of a cwd is that we are responsible for the life, health, and happiness of our child. Diabetes doesn't take a break. More often then not parents check during the night. Most children will not wake for low bg. Parents typically know when they need to based on their own child's needs and trends.

A few weeks ago though I had an adult type 1 try to tell me not to check overnight unless I absolutely had to. Sleep disturbance and emotional reasons were her motives. She was trying to look out for our kids. However she then suggested that all of the parents waiting for the night check read a book about diabetes burn out. I will not name the book here, because as a parent that has read it, I don't think it is a good read for most parents simply because we take each poke, each bg number that is out of range to heart.

We don't enjoy poking our kids, in fact diabetes care is an oxymoron for most of us parents. Care implies tenderness, and there is not much if anything about diabetes that you do tenderly. Where we used to peek in on our children and see our sleeping little angels, we now peek in and hope to not disturb their sleep, and our biggest hope at the moment is the number displayed will be dead on so that no further action is needed and we can be assured of our little darlings safety.

Some days that number is anywhere but dead on. That becomes frustrating. It can turn completely rational people with wonderful sense into babbling idiots... It can cause the most confident people to doubt them selves; the most intelligent to feel about as smart as a rock. It really does a number on one's mental state. New people are often plagued by the pain they inflict on their sweet child many times a day.

To imply that the parent of a CWD has no clue the pain they inflict is a large, rather wrong statement to make. Most of the parents I know would take their child's diabetes from them if they could, pain and all. Why? Because it would hurt less to practice diabetes care on ourselves....... It's as simple as that.

Banging my head against the wall

2008-02-15T13:12:00.000-08:00

Do you ever wish that you'd gone to medical school and became a endo, and maybe a GI doc, too? I sure do some days. I try hard not to micro manage, and when the problem isn't obvious I try to just adjust and move on. It doesn't always work that way though.

Julia's bg has been erratic lately. We will see days with mostly lows, adjust with the temp basal until we have it right on for a few days, then change over to new basal rates. Then the next week we see highs for a few days only to stabilize again and back and fourth it goes. I am about to pull my hair out. I wish I could find the culprit so that I could remove it from the situation, or head it off, or at least know how long this will last.

For a while I thought it might be the cold weather, or maybe we were going to far with the 10 minutes pre meal exercise that we use to help with after meal spikes. I've taken both out of the equation with no different results then I had before.

I really feel like I need to find a stress reducer other then banging my head against the wall. I've said it before, and I will say it again. Someone needs to make an emoticon of a smiley guy banging it's head against the wall, just for us D parents. Maybe it would save us all a few brain cells.

A very special friend!

2008-02-05T20:08:00.000-08:00

I met Richard Alvin V. about a year ago. His reputation had proceeded him. I had heard of him through a few people and actually wasn't to sure if they were making it up, or if Richard was real. He's real alright, and honestly I don't know where I'd be without him. He gives me inspiration, and hope for Julia's future. He gives advise, and support when it is needed. He's always willing to share a piece of himself and his life with those that have that need or want. He's super sweet and very special. He's given me such wonderful support and encouragement over the last year that I do not have the words to express it all here.

Richard has started to share his amazing life story about living with type 1 over the past 60+ years in a blog on diabetes daily. I'd like to share the link here, and allow you all to read about, and maybe even get to know the man that has given me much hope for the future, a lot of inspiration, and a wonderful gift of his friendship.
Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter17

I will post links to further chapters as they come out.
Jamie

Diabetes foundations, and the ethics of fund raising!

2008-02-01T16:31:00.000-08:00

There are tons of people out there that want money for diabetes related purposes. Some want it for education, others want it for research, some to help those in need get supplies - locally, nationally, and internationally, and the list goes on. Everybody always needs money though.
I find myself skeptical when I see an ad for a D fund with a child in the ad asking for money if it doesn't have a word in the name that says it is for kids, even if thats what they claim. When Julia was first diagnosed I received an ad via email. It had a picture of the cutest little girl in it. The fund raising goal in this ad was to raise $1 for each person in the U.S. with diabetes. Upon reading further it was going to educate people about type 2.
I feel like our kids are often used to secure money for purposes that will never benefit them. This angers me. It more then angers me. I become outraged. I want to scream into space because I feel like funding that could go towards a cause that actually helps them is being robbed from them. It's not that I don't think that things need to be done for our kids, but it is comparable to a child earning a ton of money and the parent living off of, and bankrupting the child, in my mind at least.
Then there are groups that mis represent themselves using our kids. These are not as bad as the former, IMO. I have mixed feelings about them. They do good for all, but they will run an ad that sounds like they exclusively are there for kids when they actually are there for all. That's not quite the grand theft of the first group, but it's still not right morally. I think they'd do better basing it on relationship names such as saying the fund is to help grandmas, grandpas, mothers, fathers, children, parents, cousins, aunts, and uncles. I know when I click on a page to donate and I find it isn't what I am thinking it upsets me. I tend to not donate after that, even if it was a cause that I originally would have donated to.
I clicked on a foundation today. I was actually trying to see what it was, but I would have given money if it had been what the ad advertised as. It was a good cause, a good group, with great intentions to help all in many ways. I didn't donate though cause I felt scammed. This was on a diabetes site. It is a reputable name, and a real charity, but I felt lied to because the ad I had read was so very misleading making it sound like a fund for kids with diabetes. That's the cause I want to get behind in all of this, that's what is important to me. Not just for my child, but for all of the children, and adults that have type 1. That's where my heart is. It isn't that I don't care about the other types or want cures for them, but it's more like I'd like to see a cure for anything else that people have. It isn't my deep passion.
Maybe I am making a mountain out of a mole hill, but that doesn't change the way I feel. You can tell me all day long if I am and I will believe you, but I will still feel the same exact way.

So, lesson learned. Check and make sure where those funds go if you are as biased as I am.

My gluten free diet is over. This is how I feel!

2008-01-30T18:34:00.000-08:00

Choosing the D doctor!

2008-01-30T15:10:00.000-08:00

For the most part I make changes to Julia's doses on my own. My main need for a pediatric endocrinologist , or diabetetoligest is to write scripts, and take A1Cs. It's nice to have a second set of eyes though when things are just way up and down and the trend is that there is no trend.

In May Julia's pediatric endocrinologist quit his practice. He had some issues with the hospital he was working at. He was the only pediatric endo here. I went on a search which led me to a pediatritian that specializes in diabetes. I was having trouble seeing Julia's trend. Some mornings she'd go high, and others she'd go low. I also wasn't seeing enough of the overnight pic even with hourly checks. I needed that second set of eyes. Since her meter average was 149 he wasn't concerned. That upset me. I thought we were out of the dark ages of making dose changes based on averages. Well since then I take Julia to her GP. Our GP is great. She knows that I have knowledge to make good changes in doses. She knows I test a lot. She's pro pump, and pro CGMS. She'll fight with the insurance co with you, and takes the time you need for the appointment. Only she'll tell you up front she doesn't know that much about diabetes.
I get my way though, and I am a control freak so this has suited me the best out of my choices.

Now we have a new pedi endo in town. I think Julia needs to see him. I think he'd be a good choice. However given the attitude of the hospital with diabetes I am scared of him taking our pump, and restricting her diet. I'm scared of having to call in numbers and not having the control to make changes again. To me, waiting to make a change that's staring me in the face is stupid. I've also always had "changes may be made to diabetes health plan by parents when they feel that a change would be of benefit" on all of our school stuff since if they write it as an order, so that we don't have to wait for the doctor to call and say, she started ballet last night, and has been running low, so her basal needs to be reduced and she should only be bolused for half carbs, or she's sick, we need to double up on it all. That can take a day or two of waiting. Diabetes is an immediate disease.

I hate going to new doctors. I hate doctor hopping. I am going to give this one a chance, but I will explode if he thinks he's going to take the pump, restrict her diet, or not give me control over changes made.

Yeah, I know. I am a HUGE control freak.

Steel Magnolias and combative lows!

2008-01-28T11:15:00.000-08:00

Last night Steel Magnolias came on. I think most parents of children with D find this movie hard to watch. The movie (if you haven't seen it) shows a young woman with D progress through a small part of her life while trying to balance diabetes, complications, and normalcy. There is a scene at the first part of the movie where Shelby (played by Julia Roberts) has a bad low that comes on sudden. She is combative and fights treatment. Her mom forces enough OJ into her to bring her around enough to finish treating her. This is how the film makers introduce diabetes in the film. This part has never really gotten to me that bad before. It's usually later in the movie that is hard to handle (don't worry, I wont spoil it). However last night this part left me emotional mush!

I have been through that kind of low with DH. I guess last night it just hit me out of the blue, but I could not stop sobbing afterwards. My mind kept flashing back to Shane's last low like that:
I awoke in the middle of the night to pounding and quickly realized Shane was trying to go through our dresser. This is not a common occurrence for him, and he doesn't sleep walk normally, so my guess was low bg. I slowly approached him, say his name and not getting a response at all other then him still trying to get through the dresser. I got behind him and tried to turn him. When I did this he swung at me full fisted.( Now don't get me wrong, Shane has still never hit me to this day. Luckily his reflexes are slow and his gross motor skills are sloppy when he is that low, or I am sure by now I'd have had at least a few shiners by now. ) So I stepped back and dodged the swing. I decided to try and help I'd turn on all of the lights leading to the kitchen where I figured he was trying to go. It worked, he followed me and sat down at the table. I sat a juice in front of him, and was lucky that he took it, and started to snap out of it.
The scariest part for me of a low that is so bad that fight, or flight mode kicks in is that it is hard to treat a person that wants to fight you. It could go very wrong, very fast.
Night time lows have always been bad with confusion for Shane. Luckily they don't happen often. I think it is a combo of a low for an extended amount of time with the sleep disturbance. Sometimes I am not sure if he even really wakes up. When he is confused like that he wont go for, or use the low treatments in our bedroom, he always heads for the kitchen out of instinct I guess.

So last night I was an emotion wreck. Thankfully a good friend was there to help cheer me up even though she didn't know that I needed it, or what had gone on in my head earlier. Thanks Lanae! So last night a positive came from a negative. I got to know a friend better, and we had some fun. Without that negative we wouldn't have had that chat! I would have missed that chance to get to know her better.

Sometimes the dark has to come before the light, and sometimes the light comes from the darkness.

The fear of changing treatments

2008-01-25T18:36:00.000-08:00

Fear! Fear is everywhere. Often it is a motivator, but sometimes it hinders progress all the same. I see it motivating parents of kids with diabetes just as often though I see it hinder them in progressing onto a better treatment. In diabetes there is a basic tier level. Most leading doctors in the field of diabetes agree that NPH, Lantus/Levmir, and the pump is the order of this tier. So why isn't every person pumping, or at least want one of these pumps?

For the NPH user that is tired of the flux in bg, tired of having to make their child eat a certain amount of carbs, or not able to control over night bg levels without sacrificing one way or another in terms of high or low bg levels there comes a time to move on. This of course doesn't always happen. Some people, specially those in their honeymoon phase may not see the need for a change. Maybe this treatment fits them perfect, or maybe they work very hard to make it fit, or maybe they have problems like the above. For the person it isn't working for, they have obvious other options. Sometimes doctors out of fear are still using outdated insulins, and will not step into the now. Sometimes the patient is scared of what a new treatment might bring. Lets face it, starting a new treatment is almost never an easy switch, and usually requires tweaking before you get it just right. That of course can make you feel like you have stepped back to the first day of diagnosis, and can help you to feel very unsure of yourself.

Then there is Lantus/Levimir that lasts for about 24 hours. These longer acting insulins can usually be taken once a day, but some people have to split them into two doses for various reasons. This coupled with 4 shots minimum daily can really scare people off. You have to carb count, and you have to be accurate with your carb counting to see good results. No more feeding the insulin. Some doctors are scared of these insulins, even in today's day and age and even now that they have been out for close to ten years. They say they are too powerful when in reality I'd rather overdose on one of these then on the new rapid acting insulins that are used for meals when you take it unit to unit. What it really is with these doctors is fear, and lack of education. If they had the education the fear wouldn't be there. They'd fear the lack of control more then the fear of what can go wrong. This treatment is sometimes called the poor mans pump because you take a shot of rapid for every meal eaten unlike with NPH which has spikes to help cover usually lunch. You can correct for high bg levels without having to consider the spike in the insulin, too which is a great asset. However most people do not need a strait line basal. It can work for most, or be made to work well for most. Once out of the honeymoon a person may see their needs become peaks and plateaus and will either need to rearrange their schedule to make the insulin fit, make sacrifices in bg control one way or the other (high or low too often) or they will need to move on to the pump. Like before, doctors that are not well educated in pump therapy as well as uneducated patients will have unreasonable fears about the pump. I mean it is a machine for crying out loud and we are going to use it to control our bg 24/7? Machines break, they malfunction.
Look at your remote control, you don't take it everywhere, and use it quite as often and mine at least spends half it's time lost in the couch, under the couch, or where ever else little mind think mom and dad may not find it. It's missing the pause button. Don't ask me how. I've had the same remote for a few years now, though. The remote before died a horrible death because the battery door fell off and then the tab that hold it on was broken off. Not being one to duct tape the door back on we paid out the money for a new universal remote. Now if these are the problems I have with my remote, what in the heck is my child going to do with a $6,000 pager sized medical devise that has a tube that remains in the body for up to 3 days? Band aides don't stay on for 3 days, my kids can destroy medical tape that is attached to them in a matter of hours without even trying. Like this little patch is going to hold on them, HA! Then you always here pumpers complain about site failures. Site failures can be anything from kinked tubing to a site that is not absorbing due to trauma, blood backing up into the site, or a site that comes out weather it is seen or not.
The pump companies and the medical companies that make supplies for these pumps however have thought about these problems. This is where all of those fears above become unreasonable and exaggerated due to a lack of education and understanding. I read the book pumping insulin and also the book smart pumping. I read pumping insulin twice before pump start day. There are just things about pumping that I will go into later that a person cannot learn from a book and need to be practiced before they are good. Back to the pump companies. My daughter's pump has alarms for pretty much anything that can go wrong. Her occlusion alarm tells when there is back pressure in the tubing which means a kink, or blocked tubing. There are alarms with codes for different malfunctions. An alarm to tell you if the piece that the motor uses to push the syringe forward is not touching the syringe (not primed) and alarms to tell you when you are close to being out of insulin. Julia's pump lets you decide how many units you want left for when it alarms. Supply companies have many different types of sets. Teflon tubing to go under the skin for people that have a fear of having metal in them for 3 days, or metal for those that either fear kinks, or get kinks often. There are a ton of different types of tacs, glues and things to help hold sites in place. There are products made to help you remove sites that are stuck too well. Numbing creams and sprays to reduce pain. For $6,000 you also get one heck of a warranty and 24/7 customer service with same day shipping during business hours and next day shipping for after hours. They always overnight the new pump to you because they do not want you to go to long without it. For vacations some companies have programs where they will ship you a back up pump at no extra charge to take with you. Warranties last 4 years, and that is standard with each company. While bad things can happen on a insulin pump reality is that it happens most frequently during that period of adjustment we talked about with changing therapies. There's a learning curve, not just from books, but from trial and error with inserting sites and learning the best place to do so, and if you need additional products like a numbing cream, or a something to help the site stick. Changing treatments also usually requires changes in dosing. So doing all of this together is often intimidating.
I've also seen a new type of pumper recently. Well, not new, untethered. The untethered pump method was created for people that needed to be unhooked from their pumps for long stretches at a time. Mostly athletes use it, however more recently it has became popular with parents that are afraid of site failures, and their child going into DKA. While this may seem like a perfect balance, and may be good for a beginner, it has it's drawbacks. One of the most loved benefits of the pump is the ability to temporarily reduce, or increase basal rates (back ground insulin). If using the untethered method you can only decrease to the point that the insulin is being delivered through the pump, but cannot decrease the lantus, or levimir being given because it lasts for 24 hours. Reducing the basal rates often comes in handy when high activity causes bg levels to drop, and it also comes in handy during vomiting, or the stomach flu. This is a feature that many people who pump without adding any other insulin find to be a very important feature. However understandably each person if they do choose to pump will choose pumping for several reasons that are as individual as the person them self. Some choose it for quality of life, or flexibility, while others choose it for better control, or the ability to set the pattern of the insulin to their needs which is harder to do with the other insulin therapies. I am sure there are more reasons then that.
Of course not everyone is emotionally ready, and some never will be. Some will make due with the other methods, and others will do their best to make due.
All in all pumping gets a bad rap from those that don't understand it. They may understand the theory, they may have read the books, but until they've practiced it and been through it, they wont understand how freeing, and how much control it gives you over a disease that is uncontrollable. While it isn't without it's flaws, flaws exist in every treatment, and human error is right there at the top of the error list according to John Walsh.

INSULIN FOR THE HOLY FRIGHTS. Waterloo daily April 10th 1935

2007-09-02T23:20:00.000-07:00

Personal Health
By William Brady, M. D.
(Copyright, John F Dille Co.)

INSULIN FOR THE HOLY FRIGHTS.
This talk' is mainly for the doctors who seek information
about the uses of Insulin to help very frail,
undernourished patients gain a little desirable padding
for their bones. '
Some time in 1928 Drs. K. E. Appel, C. B. Farr
and H. K. Marshall published a report of their ex-
perience in the use of insulin to enable numerous mental
patients to gain some needed" flesh. Sixteen male
patients made an average gain of three pounds a week
and 13 female patients gained an. average of 2.4 pounds
a week, on doses of from 5 to 35 units of insulin
dally for periods of from two to eight weeks. Along
with the insulin the patients received -a diet which
yielded around 4,000 calories a day. Orange Juice was
always kept at hand for any patient who manifested
any symptoms of overdose of insulin, as It should be
kept at hand by every patient receiving insulin.
Dr. Nellis B. Foster, in an article on Insulin published
in 1930 said:
"Why so many physicians seem to be afraid
of insulin is beyond -my comprehension. A normal
person can take from 5 to 10 units of Insulin with
no notable effect. From 10 to 20 units a couple of
times a day is an ideal way to stimulate the
appetite. Recently I had a lad . . . physical wreck
.after a severe siege of pneumonia. He had no
appetite; nothing tempted him. So he was given
20 units of insulin before breakfast and dinner and
the result was marvelous. He became ravenous."
Further on this same authority, discussing now the
treatment of .diabetes, says he has no patience with
the' all too common custom of the physician administering
the insulin. He declares that any intelligent person
may be instructed how to administer his own insulin,
and often children 10 years old do it with perfect
technic.
In an article by Dr. James J. Short published In
Jour. Lab. & CHn. Med. for January, 1929, on "Increasing
Weight with Insulin," the author advocates doses
of 10 units three times daily before meals, and a diet
including a i liberal amount of fats, since the hunger
produced by the insulin Is sometimes satisfied with too
little' carbohydrate to help much In building up weight.
German physicians who have used this treatment
with satisfaction . advocate higher doses-of Insulin, as
much as 20 units three times a day. With these larger
doses of course the patient should take larger meals
or more carbohydrate.
- Every person receiving insulin, no matter for what
purpose, should have always at hand either some
orange juice or a. snack of candy,-sugar or milk chocolate'
or sweet milk, and cake some such carbohydrate
food ; at once If he feels any unusual weakness or
queer spell at any time within three hours after his
dose of insulin.
That's all there is.
Now- if people keep on writing to me to complain
that their doctors do not think the insulin treatment
is safe or advisable for a poor skinny wight with nothing
in particular the matter except underweight, I
may get mad and open a clinic or something-and Invite
'em all to come in and learn how to fatten up.

Diet and Insulin Control Diabetes Jan 10th 1930

2007-09-02T23:08:00.000-07:00

This article was found in the Chester Times in P.A. dated Jan, 10th 1930
(It was in PDF, and did not transfer exact. I cleaned it up a little, but not all of the way, I think you can get the gist though.)

Diet and Insulin Control Diabetes
By ROYAL S. COPELAND, M. D.
-.United States Senator from New York.
farmer Coinmissioner of Health, >'«u? Tori; City. DIABETES U « condition resulting from inability of the system
to handle properly the sugar which is consumed and which is
essential to health- . In this disease the body becomes overloaded
with sugar or glucose. Other foods cannot be assimilated
properly and digestion faila. ' '
Persons who have a habit of overeating and
who are overweight are subject to it. The
tendency to overweight appears to "run in
families" and so, in a. sense,'diabetes may be
considered to have a heredity nature. Obesity is
usually a forerunner of diabetes.
It is more frequent, too, among people who
are' mental workers, rather than among manual
laborers. Nervous influence's have their part to
play in the disease as,well. It is probable that
disturbances in the-nervous system interfere with
the chemistry of the body. : •
.; .There, are upwards'of a million people in
the United.States today who have diabetes. Some
types are very mild in their nature, while others
are more severe. ...
It is encouraging to know, that through a
carefully planned diet and the -use of insulin OR COPCLAND
treatments the disease may.be kept in control. If a patient will follow
certain health rules, he may live long and enjoy a useful life
The use of insulin in: diabetes dates from 1921 whfn Dr r>cd-
«nck G. Banting; in tho.;Toronto General Hospital, made his discovery.
He proved it possible to take Insulins . *
from the bodies of young animals
and use It in injections for the successful
treatment of this disease. Its
use makes possible the burning of
sugar in the body, and it also assists
the. disposition of fat. This insulin
treatment Is not taken Independently
of. but In connection with a
proper and limited diet. - . •
- The diabetic patient must first of
all. follow a carefully planned diet,
which -Is outlined by his physician.
The prescribed diet is taken under
the most precise regulations. Much
can be accomplished by Fu'ch a re-
Eime. "The diet • necessarily differs
with each .individual- ' . I
All. reasonable foods may be In- I
eluded, but this total quantity of food
•should be strictly limited. The pa> I . A—H mieht b« well to try a. rood
tlent must be extremely temperate nosf *ml .thro.it spray Pnrhari." shin
the urn of sweets. - UnltM haf • '- - '•'• - ' '•• , »n~ -,nrt
throat speclalist for the necesiary
treatment.

The good doctor then goes on to answer questions that have been submitted to the paper.

2007-09-01T12:44:00.000-07:00

I know I promised to post this years management plan, but I didn't do one. No I didn't leave her hanging either. I just filled out the form that comes with the ADA school packet. Each time I went over the health plan I was writting I forgot something, or went off the trail.

School is going well. The school had a new dx last year. The child was in first grade, and had the teacher that Julia has this year. The little girl is no longer at the school, but she and her parents laid the ground work for us, so it is a relief. There has been no issue about testing, insulin, ect...
I'm excited!!! Julia is doing well!!!

Death, taxes, and Change.....

2007-08-11T12:40:00.000-07:00

Every once and a while life changes. The life that we once knew will change for better, or for worse. The problem with that when speaking in terms of a child with diabetes is that we end up having to tweak the insulin all over again.

School is set to start, and I find myself writing a health plan for first grade. Yes, all day at school, and lunch there to boot. Now if this was creative writing it would be done, and in a way I guess it is. In order to write a good plan for school we need to know what will our challenges be? Last year it was sever lows. Highs were never really an issue. Now all of that has changed, and so I am finding myslef not knowing what to write, and knowing that I am going to have to tweak this health plan many times. I wish I could just pick up where we left off last year, but it would not be accurate. Do all D parents go through this yearly, or do things eventually go back to how they were?

So far change has been my biggest arch enemy. Not that all changes are bad, and yes, I do look forward to full time school, but the only three things that are ever certain in life is Death, Taxes, and Change.

Back to writing the health plan. I'll post it when I am done!

The story of insulin

2007-08-07T15:13:00.000-07:00

This was shown on Dlife.

2007-08-04T20:09:00.000-07:00

We took the kids to a safety fair today. It was hot, the drinks were gone, and the lines to see, or do ANYTHING were waaayyyyy to long. The kids got to climb the rock wall at one of the booths, but that was an hours wait. We had all had it by then. This used to be a small event, but was advertised on TV this year, and it was all FREE! so yeah, it was crazy. No ones fault, just to hard to do anything, and for me, way to hot.

Julia seems to go high from the heat this year. She gets so sick in the heat, too. I don't know if it is the headache, and tummy ache from the heat, or the high, or really what sequence all of this is playing out. She was a happy 126 when we arrived. An hour later she was a soaring 333. We decided to go get lunch at a little fifty's diner that is so cool to go to. Cool off, get some food, relax, ya know? We get sat in the motorcycle table (there is a real harley sitting above the table). The kids love it. Julia is feeling really icky and we are thinking at this point maybe getting our order to go. She doesn't want to, so we decide to stay. I bolus her for the lunch she ordered and was just brought. And about 5 minutes later it happens............

An alarm goes off on her pump. She hands it over to me, and it reads............
PUMP OCCLUSION!
It is our first. Julia has been pumping for 9 months now, so that isn't too bad. I was hoping, as I am sure everyone does to never have this happen. It happened about 5 minutes after the lunch bolus, so I wasn't sure if she did get any insulin. Only way to know is to test. We finish our lunch, and head home knowing that we will need to correct here in a bit, but we didn't realize how bad it would be. We were fairly close to home. I am sure that she didn't get her lunch bolus. Of course this is hind site, and as they say it is always 20/20. She was 554. Had moderate ketones. Makes me wonder if she wasn't really coming down from the first correction, too. Maybe that test was wrong. Who knows. We gave her 2 units by injection. Changed the site. She came down eventually, but it took soooo much more insulin, and it was from a fresh bottle. Her basal rates have increased, and I don't typically have to make huge corrections, so now I wonder if I need to change her ISF, or if that huge of a high just needed more. Poor girl. Ketone level is negative again. They flushed rather quickly.

Have I told you lately how much I HATE DIABETES???? Well, I do, I may come to terms with it at times, but it just plain sucks. Sometimes I find a silver lining, but that wasn't today. Today the clouds are all black, and angry that this monster has come to our home without being invited. It has bared it's ugly teeth, with it's eyes glowing red hot and went in for the kill, but for today we have defeated the nasty D monster. If only for this moment because we all know that highs, and lows with a scattering of normal is what lay ahead just around the corner.

Summer Camp

2007-08-04T03:35:00.000-07:00

I know I haven't blogged in a while. There are a few reasons: I haven't had much to report. And second I have been too lazy, or tired, or whatever to figure out what the heck my password is. I did though to post on another blog, so here I am in the wee hours of the morning posting on my blog while I am logged in and know what my password is, and can think of somewhat of a topic to go into.

Once in a while the parent of a child with diabetes finds out that they have surpassed those in the position of teaching said parent. I had this happen at diabetes camp. Not a good place to find that out....... after all, you are entrusting them with your child, your D child at that.

My main issues are not huge, they are relatively small in the over all view of it all, but to me they are very large issues. I am sure by next year they will be forgotten, however for now a rant must be written so that I can move forward onto new rants.

Our diabetes day camp that is for kids from 3-7 is ran by our CDE group. There are dietitians, CDEs and other nursing staff. Plus most of the volunteers are either diabetic them self, have a loved one that has D, or medical staff. This year there were some pre med students as well. Now, you'd think that most people in the categories above would know that a bg in the 200s needs correcting, right? All of you pumpers out there know that waiting until the next meal is silly, and not covering carbs is silly, too. Well, Julia ran in the 200-350 range while at camp. There were a few factors there. High temps always cause her to run higher, we just correct and move on when that happens. Then there was the fact that they were having 15g free snacks, both morning and afternoon. Julia runs her own pump. She only needs supervision, and guidance on how many carbs. So the last day of camp is parents day. I go, so does dad. Dad is over there somewhere looking at pumps. He wants one so badly. Were waiting for Julia to get back from the zoo with her group. When she shows up she has a tummy ache, head ache, and is in the 400s. Great...... No one has checked her ketone levels, even though she has been high all day long. So we feed her lunch and check. SHE IS MED on the urine strips. Double great!!! We got her home, and took care of it. It was so hard to get her to drink water that I ended up grinding ice and making SF coolaid slushes. Corrected with a syringe, and changed the site (diabetes camp had insulin, sets for site changes, cartriges, and syringes, plus both parents cell numbers in case they needed us, so why it wasn't done earlier, I dunno) added it into the pump so I could correct, and have the pump do the IOB for me. Check every 2 hours along with ketone levels. She goes down nicely once I get fluid into her. I am mad. I am very angry. I received a survey asking how camp was. Julia had a great time, met a lot of friends...ect... however I am still fuming, so I haven't filled it out. Think I should tell them what I think about their D care? Or just fill it out nicely?

I know I will send Julia back next year. Since dx it is one of the only times that she is in her true skin. She is always a little guarded when she is with kids with working pancreases. She says it is because she feels different. Poor kid. I also see so much emotional growth while she is there. Even though the holiday parties is ran by the diabetes youth group that typically works with older kids with D I find it most helpful to hit the christmas party. Mostly because it gives her that 6 month pick me up. She always comes away with such wonderful confidence, and a sense of self that is unbelievable. I can't wait until summer 09. SHe will get to go with the big kids to over night camp. I know I will be a wreck, but it will be good for her, and good for all of us, I am sure.

That is it for now. I will try to be better at blogging, or at least do it more often.

Morphining

2007-06-04T00:41:00.002-07:00

Ever feel like you are morphing? I know since Julia has had D I have morphed.

First I went out and bought a bunch of sugar free stuff. About a week after dx our CDE told me that SF stuff wasn't needed. But that I should avoid certain foods such as regular soda, and syrup, and juice, but that those things were good for lows. We lived like that for a long while, and then one day I saw this look on Julia's face while she was considering her drink options while we were eating out. She had the choice of diet coke, milk, herbal tea, or water. She just looked sad, not sad like she was going to cry, more broken. So now, I've just thrown that out the window, and have just let her pick whatever she wants. She isn't a huge drinker anyways, and usually just has one glass of whatever. It was tricky at first, but I think I've got it down.

Then there was the whole I hate diabetes thing that came out of the mouth of my babe. It controls her life, and no matter how hard I work to create balance that is just how she is going to feel. To many bg tests, to much worrying about carbs, and the kinds of carbs, and hey can you eat that sucker with dinner so that you can have some fat with it? Diabetes mocks me. I play by it's rules, but they are always changing. They will always change with each life stage, and growth spurt.

Over the past few months I have been holding a weight in my hands that I just don't want to carry. I know the answer to how to get better numbers. More testing. For a lot of people CGMS has been the answer to that. We tried one out, and it wasn't great. I was aware before hand of what it could actually do, that it tests are delayed, but I actually expected to catch lows before they were bad with it. I didn't. Not that whole week did it alarm at 90, and have a mild low. Going off of that was as accurate as taking Julia's word for it (she doesn't feel quite a bit of her lows). It did good with trends to a point, but I just feel we need better. Nothing out there will work for that, though. MM rubs me the wrong way. Our rep was rude, and wouldn't respond to me when looking for a pump, and they seem to have given up on improving their pump (which leaves a lot to be desired) and are no longer focusing on insulin delivery, but CGMS. SO MM probably will never have our business. Dex has plans to make CGMS more expensive to maintain from the sounds of it, and dex is really no better, or worse at guessing what the bg was. Animas has plans to release their CGMS in early 2008, and until that happens we will be playing a guessing game as to if it will happen. Some people having been awaiting the abbot model for quite some time now. Will we ever get something that is actually good? I know even our bg monitors are not accurate, but I'd at least like to be at the ball park if you know what I mean. SO I guess until I see something that is really worth the money we'd be spending we are out, and will not buy into the CGMS that are currently available......

I guess that is enough of a rant for now. Here's another wish that there will be a cure while Julia is young, and before any complications set in.

2007-06-04T00:41:00.001-07:00

Pump Died

2007-03-10T21:31:00.000-08:00

Julia's pump died on Thursday while at school. We were sent a new one by Animas, and recived it the next day. We had to go back on Lantus for that short time, though. It made me realize how much easier it is to manage b/g's with a pump. Not that I didn't know, but it was a huge reminder of why we switched. We had already given lantus the second day, so we kind of used the untethered approach for that day. We used the pump for her boluses, and set a temp basal at off until she would have been due for the next lantus injection. It worked really well.

I am really impressed that Animas got us a replacement pump out so quickly. We have had problems with other shipments not coming when they say they are out for delivery, so I was also impressed with UPS this time around.

Being back on injections was a nightmare. I really hope that we never have to do that again.

Emotions, stress, death, and taxes......

2007-03-07T10:23:00.000-08:00

Well, Julia has had change, enough to drive me to the edge. I think she is slowly coming out of her honeymoon. I make changes every few days. As soon as I've got it, I need to increase the doses more. This leads to lack of sleep, which leads to an emotional state I never knew existed until I spent most of my nights on "call".

We are also getting prepared for our big move. I received permission from the school to keep them here for the rest of the year, but Julia would like to switch now. She is ready to make new friends. She has to be anxious, but she sure isn't showing it. She is excited to have her new room, and paint it pretty colors, and she is excited to go to a new school, maybe ride the bus, and get to know more kids.

Her friends great grandfather died the other day. Julia's great grandfather has been in the hospital for about a week with pneumonia. He is 90, and is amazing, but we all fear that his time is running short. Julia is making the connection, and asking some pretty tough questions. I think this will definitely bring her some extra stress.

All the while I am trying to help all of my kids cope with EVERYTHING. Some are ready to move, others are not. Julia seems to be the only one worried about grandpa though, so that is a plus for now. It is all building up, and I find myself crying at the smallest things. I need to pull it together, have a stiff upper lip, but I am having the hardest time doing that. I did go to my doctor and ask for something to help my depression, however she thinks it is lack of self care. I don't sleep, I eat once a day, I do however keep plenty of coffee in my system, exercise, and I have kept up with my hygiene. I guess we all have our priorities, and mine is to stay awake, and not stink, haha.

Well, I better go meet with the tax guy. The only two things in life that are certain is death and taxes after all.......

Letter to hospital, what do you think?

2007-03-03T10:50:00.000-08:00

My daughter, Julia Burchfield was recently a patient in your hospital. She has type 1 diabetes. She was admitted because she had a bad virus, and was not able to hold down even liquids. She was starting to dehydrate, and was well on her way to going into DKA. IV fluids were much needed, and started almost immediately.
We also needed to get carbohydrates into her, and also she needed to be able to hold down food before being released. I was very impressed with the hospitals want to individualize care, and consult with family on my daughters care. There were a few concerns that I do have about the care my daughter received, and the care she may need in the future.
I believe that you can help patients with diabetes better by making a few changes as to what a diabetic diet is according to the hospital policies. Most people have now switched over to carb counting, or the carb exchange system to manage their meals rather then the old ways of no sugar, and set doses. Carb counting is the more exact approach. You add all carbohydrates, and subtract the the fiber. The total is how many carbohydrates you will end up with that either need to be covered with insulin, or some people who are not on insulin do have a meal, or daily limit that they stick to. Exchanges are rounded to 15. So for a food item that is 22g of carbohydrates, the exchange would be one and a half exchanges. The current hospital diabetic diet does not utilize either carbohydrate counting, or exchanges. The foods my daughter consumed in the hospital I had to guess a rough estimate. I was not given serving size, weight, or any other helpful tools in figuring out how many carbohydrates that she was eating. I am not sure all of what the current diabetic diet at the hospital entails, I was told sugar was not allowed, although juice was strongly suggested (which usually has sugar, or corn syrup added, and lacks in the nutrition whole fruit would have) we were also offered graham crackers (which have sugar in them). I believe that by changing the current diabetic diet, to one that does not exclude foods, and uses carbohydrate values so that patient are better able to dose their insulin, and manage their diabetes as they were instructed by their endocrinologist, CDE, or other medical professional that it will add a high quality to the care they receive.
I also have strong concerns about the way in which the orders were written, and that her pediatric endocrinologist was not consulted. Her orders were to treat blood glucose level between 60-80 with milk or juice, and to call the admitting pediatrician for instructions below 60. Below 60 is not a safe level to wait for further instruction. It needs immediate attention, specially for lower levels. The lower the level the more risk of loosing consciousness, or going into a seizure. I feel that orders could have been written better had her endocrinologist Alexander Karmazin been consulted. He is the one that advised us to go to the hospital, and I still do not understand why he was not the admitting physician. I do feel that if a person has a condition that will need to be treated, or will be effected during the hospital stay that the treating doctor for that condition should be consulted, and by doing this it will lead to better care.
The nurse that was overseeing my daughters care during daylight hours had a hard time following the written instructions. She believed that a blood glucose of 90 needed to be treated with juice, or milk with no insulin. When I told her that we should not do that, she checked Julia's orders again, but was not pleased. We were treated poorly by her for the rest of our stay. Luckily she called Don Scott in to teach me about the hospital's diabetic diet before we were released. He explained that carbohydrate counting is Julia's diabetic diet, and went over our release orders that were issued by the admitting doctor with us, and oversaw our release. I feel that it went more smoother after Don Scott was involved.
Thank you so much for taking the time to read this and consider what I have stated.
Sincerely, Jamie Burchfield

We are still here!

2007-03-02T22:50:00.000-08:00

I know, I haven't posted much here lately.

Almost moving day! I feel so stressed out! I wonder how Julia's b/g is going to react from it. She is excited, but I'd bet she still gets stressed and her b/g Whigs out on me. It's just how things like this go with her.

I go to the doctor in two weeks to talk about depression again. I went a week ago, but she thinks it is due to not taking care of myself. So my instructions are to sleep, and eat right. I'm working on it. I've also got to cut down on the coffee. Coffee is my friend. I'm not really ready for that step. I would not be able to stay awake without it most days.

We tried the CGMS for a 5 day trial. I didn't think it helped. A few people have brought up the point that I hadn't been at it long enough to know. Probably true, but I'll tell you, it was a pain in the bum, literally. Julia wasn't happy about it, the alarm went off quite a bit, and I would check her b/g, and it would be in target!

Still with the lows!

2007-02-19T19:56:00.000-08:00

And I am about to go crazy. Now it isn't just Julia, it is dad, too. He hasn't had any rapid all day because of his lows. He had a 15, and Julia had a 35 that I thought she was going to pass out from.It isn't our lowest low by far, but she really hasn't been below 50 much since starting the pump. I wonder what is in our water. If both of them are going low it has got to be some type of common denominator. I just can't think of what that would be. I'd say the weather, but it has been good then bad, and back to good, and back to bad, and we have seen lows all through it. I guess even if I knew why there isn't much I could do about it, but still it would be nice to understand. I am scared to let Julia play anywhere right now, but I can't imagine how it will effect her if I make her stay home. Maybe I will go visit her friends mom while she plays for a while so that I can make sure she is ok, and do a major carb load before hand. I will also email the school nurse in the morning to give instructions. I am going to have her correct for anything below 120 since she has been falling so hard and fast.

I hope everyones numbers are better then ours.

2007-02-16T16:18:00.000-08:00

Julia has seen quite a bit of lows recently. It has been 3 days now, and she is low within 2 hours of eating, and 4 hrs after, and at night, and fasting. I just can't keep that munchkin from dropping so now it is time to drop those basals, and higher her carbs per unit, and I bet when we do see a high we will need to tweak that ISF.

On a lighter note she loved her Valentines day party. She did just what I knew she would do. At least she has had plenty of fun candy to treat her lows.

She had her 100th day at school party yesterday. She wasn't happy. Shesaid it was more work then they usually do in school. I think the teacher needs to hear that feed back.

I recently met a man that knew about diabetes. He doesn't have it, his brother was dx'd with type 2 a few years back. He was so scared of becoming diabetic he started researching it. It was really weird to talk to someone who knew as much as he did, and asked informed questions. That hardly ever happens.

I hope everyone is doing well.

2007-02-16T11:31:00.001-08:00

Valentines day ramblings of a mad person!

2007-02-12T07:53:00.000-08:00

Valentines day, full of flowers, candy, and those cute little cards children exchange. Julia's first year bringing home a sack, or box of cards that have HER name on them. She has been waiting for this for years. Watching her older brothers look through their cards, and having her few that she exchanged with her friends in the neighborhood. But now, she gets her own!! This will mean so much to her. I hope it is all that she has thought it would be. She is the type who will bring home her loot. Spill it onto the table, and look at each item. Inspect each candy. She will sort the candy from the cards, and sort each the candy, and the cards in the way she thinks they should be. She is an organizer. She is great at it.

Each year I make a treasure hunt for Valentines day. I don't remember how it started. I know it isn't the norm... I've done it since Shane, my oldest, was 4. Ah, that was it. I read that riddles helped to stimulate the brain, and greatly helped with problem solving abilities. I had planned on doing these hunts all of the time, but never did. I did however keep up the Valentines day treasure hunt. Usually I give them each about 10 riddles to solve. Some are things like "better catch me, I am always running." Or I will use the line out of a book, or a movie, and in the pages, or case their next clue will be hidden. Each child has their own clues that are tailored for them, and their interests, and abilities. It is great fun. It takes them about 15-20 minutes, and they know to start looking for their first clue when they get home. Most of the time it is in plain site, like their homework holder, or on the door.

Knowing this day is coming I have tried to stay positive. Not worry about the suckers, and other forms of pure condensed sugar with flavoring. I am fine with most deserts, and rarely buy anything sugar free. I do buy sweetener, and sugar free syrup, though, but not candy. I am fine covering chocolate, at least it has fat to slow it's digestion, the things I hate dealing with are the no-low fat candies. They only last about an hour in Julia causing a low if covered, or a high if they are not covered. I have tried covering half of the carbs, but have had mixed results. Of course some will be saved for treating lows, but that isn't fun. For some of the candies it works to give a free amount, and then cover for a snack. That doesn't work though when you have a 36g sucker. But like I said. I am trying not to stress, or cast a shadow over this holiday. All holidays have some sort of food, even if that isn't what they are about. I am my own worst enemy when it comes to this. This will pass, as all things do. Now I just need to let go.

I have been on the diabetes sites less. I am trying to let it slip from my mind, instead of always sitting there on the top of my brain all of the time. I have lived diabetes for over a year now. Not just lived with it, but had all thoughts diabetes all of the time. There are certain things, like always having my phone on hand (I hate cells phones), or looking at carb counts that are always going to be there, but I should not have to think diabetes while in the bath. I have actually read most manuals in the tub, when I am supposedly relaxing. N E U R O T I C!!!!

2007-02-08T00:53:00.001-08:00

My Fortune Cookie told me:
Roadsigns are plotting against you.
Get a cookie from Miss Fortune

Our first visit to the hospital since dx

2007-02-07T13:21:00.000-08:00

Julia started with the stomach flu on Monday around noon. I checked her b/g and ketone level. She was 99 with small ketone. I kept checking every 2 hours, as our sick day plan calls for. She was going at it at both ends by the 4th hour into this. Her b/g was starting to raise, and her ketone level was medium. By the 8th hour she was dry heaving, and wouldn't hold down even 2 oz of water. Ketone levels were large, and instantly black. Her b/g was staying stubborn around 240. She was very ill. It was time to take her to the E.R. per endo instructions.

When we got to the hospital we were the second worst case there. She was ushered back quickly. We were first seen by the nurses aid who asked some very frightening questions. He asked if Julia took her insulin as needed, or on a daily basis, and then asked if I gave her insulin even though she was high. He knew she was a type one. Obviously he didn't know what that meant.
I decided at that point to stay one step ahead in the b/g game, and correct before they had the chance to even check her. NO ONE WAS GOING TO GET NEAR HER TO TREAT HER DIABETES!!!!! The nurse was ok with that. They started an IV soon after our intake to get her fluids restored. Over all she would receive 4 bags of much needed fluid. She really wasn't peeing much anymore. They took blood out through the IV line, and later the E.R. doc came in to tell me that she was heading into DKA pretty fast. About an hour after that they decided to transfer her to the larger hospital about 10 mile away. My car had broken down earlier that day, so I ended up having to follow her in the ambulance since it was our only car.

When we got to the second hospital the resident there decided that since Julia was pumping I would do all diabetes care. I was fine with that. Doctor number two then entered the picture an hour later. He started asking me questions about Julia I:C ratios, and ISF, Basal rates.... ect. He wanted her to go back on injections so that the nurses could do it.....and he was trying to figure out how to write the orders. Once I explained how much easier it would be for me to just use the pump for all corrections, and boluses we were ok. He wrote to refer to me for insulin needs, but the nurses were to check b/g. The rest of the night went pretty easily. Julia didn't want to sleep until she had her IV out so she pushed herself until she fell asleep from exhaustion at 5am, but she did quit throwing up, and the diarea stopped. At 8:30 she got her first food. She ate Jello. This jello was absolutely the hardest thing to cover.... It was 40% sugar free, and was not measured! I took a guess, and bolused her for 10g of carbs. I suspected that there might be as many as 15g, but regular jello is all sugar and will be gone before the insulin. She was 157 so I didn't correct. I figured the b/g would catch the rest of the insulin. It worked. She was a happy 90 3 hours after. The nurse freaked out and tried to treat her for a low. I told her no way, that 90 was a good b/g. She wanted to give her a 8 oz juice ~ at least 30g of carbs which would easily send her into the 300 range, which would only increase the ketones we were trying to get rid of.... She huffed off and went to tell the doctor on me, who I believe sided with me since the rest of the would be hell. She drank some milk. Juice, and milk were all that she was allowed for some odd reason. Since Juice is almost impossible for me to cover alone poor Julia had to drink milk ALL day. This nurse, who was not happy about referring to me for Julia's insulin needs, and was not happy that I would not allow her to treat the 90 later restrict Julia's diet to a diabetic diet. Her meaning of diabetic diet was to remove all things she didn't think proper. She tried to tell me Julia couldn't have anything with sugar, then started making suggestions for Julia's first meal which needed to consist of 1 carb choice, and 1 serving of protein. My choices were scrambled eggs, PB, or boiled eggs for her protein, and Pears, bananas, or toast for her carb. She could have juice, or MILK for her beverage. Her first meal ended up being Milk, banana, PB, I guess the nurse didn't realize that gram crackers have sugar, because she gave Julia some of those, too. Because of my lack of understanding of the diet she was trying to put Julia on, and the fact I wouldn't treat a 90 as a low she decided I needed diabetes education, and that I didn't know squat. This actually led to a positive event. I met the "diabetes guy" who took care of us, and our discharge. He knew the nurse was full of it, and after talking to me for a few minutes knew that I knew what I was doing. He was really great, and I don't think I could ever express how thankful I am to him for everything he did for us. The nurse from hell wasn't happy, but that was ok. She seemed angry that he did our discharge rather then letting her, and then he didn't make Julia ride in a wheel chair to leave, and let us walk out.

I am so scared of ever having Julia go back to the hospital again. Our endo was informed that we were in there after the fact. He is getting us a script for an anti nausea med. Hopefully we can avoid another hospital stay. We arrived home around dinner time last night, and are very glad to be home. Julia and I have been resting today, and are trying to catch up on our energy, and sleep. Today is our day off, and tomorrow we will go back to life as it was before.

Remaining in tact.....

2007-02-07T13:08:00.000-08:00

Our Fireplace 3rd phase
Our Fireplace 2nd phase
Our fire place 1st phase
Our house phase 2
Our house, phase 1
Our house phase 3

Sorry it has been a few weeks since I have wrote. We have been pretty busy with the kids, and visiting the new house to see the construction often. Above are some pictures of the progress. I have done both the outside, and I chose the fireplace because it shows the progression the best out of the inside pictures.

We made it partially intact

2007-01-23T22:23:00.000-08:00

We made it past the year mark. Julia thought it was kinda silly to mark that day with a special dinner, and a present. We also took a few toys to our local hospital like we had planned. She really didn't seem sad, but kinda natural to the whole thing. Next year we will just skip it, and I will silently morn, probably here on this blog.

I joined in on the Dlife forums a little over a week ago. There are all walks of life there, it seems. Type 1, and type 2, adults with both, parents of kids - haven't ran into a parent of a child with type 2, though. It is a pretty fun board, but not the same kind of support, or answers as I get at children with diabetes forums. You do get a free meter, and a free A1C testing kit for signing up (if you don't have enough meters already :D). There is a lot of info there, a lot of it, like everywhere else pertains more to adults, or type 2. But the people are really nice. There are a few members there from CWD, as well, so I already knew a few people.

I've been thinking a lot lately about my type 2 rants. They really aren't nice, and were never created to offend anyone, but I know that they could if read. I feel bad about that. I am just jealous to tell you all the truth. Type 2 sounds so easy to manage when you hear about it, unless the person doesn't take care of themselves, but after reading many posts from people with type 2 I've had a change of heart. I still am mad that we take a back seat, but not at anyone. Just the media, and those that only know of diabetes from the media.

I've also been thinking a lot about the JDRF, and ADA. Both do a lot of great things, but both do a lot of things I don't agree with, too. I feel torn about joining either of them. It has been a year now, and though I do advocate stuff on their boards I don't have a membership. I can pick what to advocate on though, and I don't get a say where my dues go. I also probably would read the magazines or newsletters as I have seen diabetes forecast, and it really has nothing to offer. Who knows. The Larry King, and Mary Tyler Moore thing didn't help either. Larry King seemed more knowledgeable then MTM, and she is a rep for the JDRF? What is up with that? Larry King has type 2. I didn't know about that one until reading the transcript.
Anyways.

I think I need an anti depressant. It has been a year, and I don't feel I have progressed with this much. I know this is how every parent feels, but the last two weeks I have really been in a slump. Plus I am on the sleeping schedule of the men in black from the movie. What were they on 36 hr days? Something like that. I really need to pull out of this, or find something that will work for me. Exercise is doing nothing, and I just feel ................blah. Somethings gotta give.

Almost at the year mark

2007-01-21T02:31:00.000-08:00

At 3:30 in the am I am sitting at my computer.....I don't think I will sleep tonight. I have watched a movie, played internet games, submitted new posts, and still can't calm down. I tried to sleep, I did lay down for a few hours, but my brain kept returning to the sense of impending doom. Here we are, the day I took Julia to the E.R. for a b/g reading of HI. The day I had to do battle with a doctor in the E.R., the day we knew, even if she wasn't diagnosed yet, the day everything added up in our heads, the day that I knew what it was like to be the mom of a child with a chronic illness that nobody wants, nobody understands, and nobody cares about because it isn't an epicdemic.....diabetes, type 1 at that.

This first year has been a journey of self discovery though. I have learned that I have feelings that I never knew I had, and prejiduces too, that I am working on ridding myself of. I found out how little some people care, I found out who my real friends were, too. People who didn't understand, but were willing to listen to me as I cried, or even in the odd happy moments like pump start. I have found happy in the oddest places, and worried about holidays in a way that no parent should ever have to. I have been lectured, and gave a few myself. I have taught many, but have also been taught by many as well. I have forged new bonds with many new people that I haven't even met face to face because we have common ground, I have written senators, congressmen, and people in our local legistlator, and the govoner of Idaho. My daughter has been on the news, she has written the president about her new life, and recived a form letter, and photo back. She has risen to new heights, no longer scared of "pokey" things, she is able to be far more comasionate then a 6 year old usually is, she can count higher then anyone in her class, and is learning to count by 15's from hearing mommy do it so many times, she knows how to do her b/g, and work a few small function on her pump.

We have cried, we have laughed, taken vacations, and led a pretty normal life for the most part. Julia is a normal kid who gets her insulin in a different way. I am the typical run of the mill worry wart mom. I am actually scared that one of my other kids will start down the diabetes trail today, how weird would that be. Even knowing that the chances of that happening are nil, I still can't sleep, or remove the thoughts and feeling from my head, and my heart. You see, I've had a newborn for the last year, though it isn't a boy, or girl, there are no pink ribbons, or cute little football outfits. Those were replaced with syringes, infusion sets, pumps, meters, testing strips, lancets, extra lancing devices, and a whole new collection of books. My newborn is diabetes. It will never grow out of the phase of keeping me up at night, even when she is grown, and on her own, I bet I still have nights like tonight where everything is fine, but still I worry about it all, and don't sleep as a result. I will always wonder what is next? Will they find a cure? Is it possible to cure? Will she be able to have a baby? Will she have complications? Complications are almost certain. Her dad has only had one small one, and it has been well over 20 yrs, so that does bring me comfort, but then comes more......Will she take care of herself? specially as a teen? Will she be happy? Will she have kids of her own? Will she be able to? Will they have diabetes?

If you are reading this I know this must sounds strange. It must sounds as if I have decided to loose my mind for our anniversary. I have planned on handling this with a stiff upper lip, and making it not nessisarily a happy day, but marking it with a few special events like taking toys to the hospital as they didn't have many that were in tact, and letting Julia pick a fun dinner complete with desert. I am not handling this as I had planned though. I have thrown dignity out the window, and have decided to rant on this blog, and the CWD website. What else is there to do? Later today as the kids, and my wonderful husband awake I will set all of this aside and put my party face on. Today is Joey's Birthday, the day that Julia's dad, and I diagnosed her. We are making Joey's day extra special this year to try to counteract last years visit to the E.R. and hopefully it works.

Wishing you all good b/g's, a happy day, and a cure soon to follow.

2007-01-18T08:19:00.000-08:00

I just got off of the phone with Trialnet!!! Great news. They are giving out a drug in Feb to those with really high antibodies in their study. This drug will either prevent, or delay type 1!!! My son Joseph has high antibodies so this is teriffic . Maybe, just maybe, this will mean that I wont have to worry about a pump for 2 kids, and b/g's for 2 kids, and everything else D related for 2 kids, well or more. I do have 4, but Joey is the only one currently that we know has antibodies. My other 2 boys will be rescreened in March. Happy, Happy Day!!!!!

I am updating this to add the trialnet website for anyone interested. We are in the natural history study. for more info go to : http://www.diabetestrialnet.org/about.html

Basal rate, almost there!!!

2007-01-16T09:29:00.000-08:00

We've got it set I think - well for now at least. Julia was 143 at 3am. She was 156 at 8am. I know 156 is now high for Julia, but I'd take a 156 over a 50, or a 200 any day of the week. The b/g didn't move much. That is a good thing. I may want to make a small increase somewhere in there, but I will wait and see how numbers are tonight.

We are building a house. When we first started this we were told May would probably be when it was done. I was fine with that, since we could keep the kids in the same schools for those last two weeks. However, it is looking more like March. I have permission from one principal to keep my son at his current school, but still need to get permission from the other two, which could prove difficult. I am really scared of what kind of school nurse we will get. If you have a child with diabetes I am sure you've heard as many horror stories as I have. I feel like we were lucky to get the school nurse we have now. I have currently been looking around for someone who lives in the area with a child who has type 1, but haven't had any luck this far. I want to be prepared for the fight - if there is one. I hope we don't have to go as far as getting an IEP. Since Julia is Julia, and goes low so easy with very little signs I was told that she would probably qualify for an aid with an IEP, but we haven't had any need for it because the system we have set up runs so well most of the time.

Well, I had better go get Julia ready for school.

Crazy b/g's - CGMS - Prevention

2007-01-14T10:16:00.000-08:00

This doesn't make sense. There is no rhyme or reason to it. We get Julia's nighttime basals so we think they are set, then we get a low, correct, another low correct, and change basal rates. We get a few days of normal range then the day of a site change we get highs. I was almost thinking it had to be a bad site, but the correction worked a bit, and she hasn't been high during the day. Her ISF at night needs to go up as does her basal rates, so I made some changes that I think will work. Who knows though. She seems totally unpredictable the past few days. I hate it when the numbers don't add up, and 1+3 ends up = 8.
I want a CGMS. The minimed is $2000 without the pump, or at least it was last time we looked. The dexcom is only $800, but has to be calibrated with a meter that I am not even sure if it is still made. I am not sure if you input that number or if it senses that meter, or how that works, but I have heard it has to be THAT meter. So that is one reason not to go with that, unless they plan on updating it somehow to where you wouldn't have to buy a whole new dexcom system. The navigator may never come out. It feels that way, anyhow. I am very interested in the Navigator because the sensors are waterproof, but I want to hear from people who have used it, or give it a trial run to see if I think I like it. Dexcom gives you a certain amount of time that you can return it if you don't like it, but I dunno, I'd rather try something before buying it. I am that way with a lot of things. I will call Tuesday, and see if Julia's endo has a loaner that we could try. I figured him out, he likes everyone on the same thing, the same insulin's, the same meter's, ect... and he was discouraging when I last asked him about a CGMS so it may be something he tells me no about.
Oh, I do have some kinda exciting news. Shane received a call from our CDE office, they do trialnet studies as well, and possibly others. Anyhow when they called they left a message that had something to do with a med that would either hold type 1 off for a while, or would prevent it!!!! Prevention isn't a cure for those who have it, but I would love to let go of that fear that I think most feel about their other kids being dx'd with type 1. That would be a godsend in so many ways, and is one step closer to a cure, at least I believe.

Here's to hoping for great advancements, and swift approvals.

Past faces of diabetes

2007-01-12T07:20:00.000-08:00

Above are pictures from the past. They are pictures of kids with type1 diabetes, and what they looked like as they were wasting away. Starving to death even though they have food to eat. Both pictures have a picture of what the child looked like either preillness, or at the beginning. They both have pictures of what the end looks like. They are haunting images.

Last night as I was sitting here trying my hardest to stay awake I started to think about diabetics before insulin. If you are the parent of a child with diabetes I am sure you know that subject could keep us all up. I saw this picture when I was reading up in the beginning. This girl who had type 1. I guess a doctor decided to take her picture for a paper he was writing, or something. You could see the bone, the joints were bulgy, and huge. The poor thing. When Julia was diagnosed she wasn't in life threatening danger as in the sense that she was going to die at any moment, she didn't even loose weight, but she was a sick little girl. After we started getting insulin into her even though she was still running in the 200's a lot of the time that first week, she seemed to feel better. She did sleep extra, she took a nap daily. We had stopped naps at 4, and just had quiet time so it wasn't usual for her. She had headaches, and stomach aches when she was high. That first week was hell, not just because I was learning everything, and dealing with the dx, but she really felt so much worse. The two weeks leading up to dx She had wet the bed a few times which was really odd because she basically potty trained herself when she was 2. She had such sensitive skin that if she peed then her diaper needed changing right then and there. She wasn't peeing large amounts when she would go. It was just a small amount. I really thought to myself the Friday night before dx that I had to get her in Monday to see about this bladder infection. I started pushing the water that morning, and was going to buy some cranberry juice after Joey's party. Wouldn't that have been peachy. Anyhow, I am so thankful we have insulin, and smart pumps, and all that we do to help us with our kids. Even thinking back to the time when DH was dx'd it amazes me that people lived with diabetes then. They had insulins that were great for the time, but by toady's standards are not used often, and most people don't do well with them, the animal insulin he started on when he was first dx'd makers quit making one of them last year. I don't know if the other is still made. DH started on beef, and pork insulin. He switched to regular and NPH about a month after dx. The first way his family had to check his b/g was with strips that were kinda like ketone strips. The pads were huge, his mom would cut them into fourths. There was a meter that could read these for you, or you could do it visually. It was more like a guess and gave you a range, not a single number like with today's meters. The meter he had when I met him in the early 90's was a one touch 2 or something like that. The sample size you had to get for this thing was huge. I'd say about 3, or 4 times of what yo need for the one touch ultra series. It wasn't a straw, or a side swipe either. It was a circle you had to hit in the middle of this huge strip. They still make them, when you go to the pharmacy next time look at the display, and how huge the box is. Those strips are long, and wide. If you ever see one in person you will be in awe at the person using it. They'd have to be tough to still use that. ......Even with all of the new stuff, meters that require tiny samples that can tell you within 10% what your b/g is, and carb counting, and all of the other advancements like the 31g short needle, or the 33g lancets, or the new ketone meters to read blood ketones in home.......................IT IS NOT ENOUGH!!!!!!!!!
My precious Julia, Shane my wonderful husband, and millions of others, young and old have this chronic illness, and what all that amounts to is that the least of their worries is getting spots where scar tissue builds up because they have injected in the area for so long. Why not change the area? You may be asking about now. Most people do, but can still get this. There are only so many places you can stick a needle to give insulin. Babies, toddlers, and small children have even less area to stick. And the fingers, the poor fingers. You can see the holes. Yet they need to be poked upwards of 4 times a day to stay healthy, and safe. Julia's average is 6 times a day on her meter at home. She usually gets poked 1-2 more times at school. Then you have parents worst nightmares, now that the above pictures don't often happen. Now you have kidney damage. By the time Julia is in her mid 20's there is a 80-90% chance she will have some form of kidney damage, and by the time she is in her 40's it is almost certain. Medical advancements do make those risks less, but they are still there. Then there are things like brain damage from running to low, and for to long, or death because there isn't enough sugar to sustain life. Nerve damage is somewhere in there, for me it is in the middle with high BP, high BP actually is upper middle since it leads to heart disease. So many things that tie together with others can go wrong because my daughter has this auto immune disease called type 1 diabetes. There are two things that really irk me though. One, if you have rheumatoid arthritis, also an auto immune, or lupus they can actually slow, and stop the process for RA with relatively safe, and targeted auto immune suppressants. Lupus they can do, but not with as much grace as with RA. Even though it irks me RA improvements give me hope that maybe my grandchildren wont have the same fate. Two is type 2 diabetes. I seem to always be ranting about this one. It seems terribly unfair that my daughter doesn't have the option of loosing some weight, exercising, and eating healthy. She can't just not check her b/g cause her A1C was good, and she sure as heck can't just pop a pill, or two a day to maintain a good b/g. Yet, there are so many people trying to get funding for type 2. Cure it, prevent it, do whatever you wish, but don't you think that the kids who have more issues, who have harsher treatments, who didn't get the option first of taking better care of themselves deserve better? You see all of these articles about diabetes, some have type 1 kids as the center, but all the article will talk about is diabetes, not type one, and most of the info will be about type 2. Then you get the money raising techniques for different diabetes groups, if they support funding for type1, and it's research the tiny child belongs there. If they support both, and the money they are raising is not for something specified you can almost guarantee that the money raised will go to a type 2 cause. Not that I don't think type 2 needs to be cured, but I think there is a lot to be done by the people at risk such as a life style change. Type 2 would more then likely still pop up, as sometimes the elderly, or those on meds, or for whatever reason are not overweight, or under active get it, but I bet the numbers would be closer to those of people with type1.
Now that I have gotten that off of my chest I would also like to note that I have friends and family who I love who have type 2, and it isn't the people with type 2 I am complaining about. It is the media, and other groups who use type 1 to get attention for type 2 which has little to no relevance of treatment, or a cure for type1.
Things need to change. We are not as loud, as we are not considered an epidemic, but we still need to be heard. I wish we could find our voices, and one heck of a huge megaphone.

Snowy weather, and crazy b/g's

2007-01-11T07:05:00.000-08:00

Julia's endo must have scared those beta cells into working better, or something. She was 203 when we walked out, but I was still trying to tweak her basal and bring it up to where it needed to be. Lunch, correction, school, LOW......I thought I needed to step back more on the I:C or ISF at lunch, but then with no IOB (insulin on board) LOW again........ok, correct low, lets see what happens. Dinner......LOW. Holly Chocolate Cow!!!! So I go through and I decrease basals a tiny bit, and sure enough 3 hrs later low again. It's pretty bad, and I am not winning the b/g fight so I get kinda drastic, and set basals back to where they were pre illness about a month ago. Then she goes into the 300's 3 hrs later. Ok, so that wasn't correct. So I adjust nighttime basals a bit, do a correction, and the next 3 hr test is at 6am so all is well. I should have checked earlier in hind site-she was in the 60's at 6. Dad corrected it, and let me know so that I could make the changes. Now I need to re figure out nights again. The times at which the increase need to start and end seem to have changed, but I do think I have the right basal amount since she is in range until it ends at 3, but is high at 4. Tonight I will extend to 4, and check at 5 along with the rest of the night. The good things is that even though we are seeing some off numbers, yesterday was almost perfect. Julia stayed not only between 80-150 most of the time, but she also had the majority of her numbers in the 120-140 zone! We are about 80% in target for yesterday, and today has gone well with the exception of the high at 3 am.
I am exhausted, and hoping that this will work out soon so that I can have a full nights sleep. Not that I mind, but I think I am a better mommy when I do sleep at least part of the night. I have to admit when Julia's numbers are to high, or low I can't sleep, or sleep well anyhow, but I do get to the point where the only thing keeping me awake is extreme amounts of coffee.

It is really snowy outside. Julia is hoping it will snow enough to get a snowman. I hope so, too. She sat at the window for almost a half hour just watching the snow come down this morning. She is so happy go lucky. She is happy when it is sunny, and warm, or when it rains she loves to splash in the puddles, when it snows she thinks about the best way to get a snowflake to land on her tongue and how big of a snowman she can roll out, no matter the season, or the weather she can find something fun to do, and enjoy it. She is like sunshine with her flair for life, and she lives each day to it's fullest. I think the only downer in her life is her diabetes, and she even find positives to that. She is proud that she can recognize higher numbers then the other kids in her class, and she says she has learned more about how people are different because of diabetes. She enjoys learning new things about her diabetes, and how to care for herself. She never stops amazing me.

Julia's Endo Appointment

2007-01-09T11:01:00.001-08:00

Julia's appointment with her Endo went better then expected. They expected a rise in A1C after starting the pump, and with the 100% plus increase in basal, and a huge increase in TDD they were ok with the .6 rise (Julia went from 7.1 to 7.7) they would like to see her 6.5-7 next visit. Now that Julia is 6, though, we are making changes to targets and such, plus the new trainer in the area did not set Julia's variance as the doctor would like to see it, so a lot of changes that are kinda scary, and will be quite the adjustment. We are going from a 50 pt variance on our pump in either direction with a target of 130, so for those of you who don't pump, or haven't started or don't have diabetes a b/g from 80-180 was ok. Now we have a 130 target with a variance of 10 pts either way which means target b/g is still 80-150, but the pump will correct anything not in the 120-140 range. So if Julia is say 150 on the nose it will correct for those 20pts down to the 130, or if she were 90 it would subtract that amount of insulin from a bolus.

Scary, scary, scary!!!! I hate Diabetes! It shouldn't have come to our house, or anyones for that matter!!!

Neurologist

2007-01-08T19:47:00.000-08:00

We saw the neurologist today. We were due for our one month check up. Julia hasn't had any migraines since our last visit. Neurological tests were still normal, and they received the CT scan from the other hospital which was normal. We go back in 6 months to recheck and see how things are going. I am so glad things are good. No migraines, lets hope it stays that way, and no neurological disorders- better stay that way.

We see the endo tomorrow for our year mark check up. I have to admit I am very nervous. I know Julia's A1C has gone up with all of the illness, and what I think is the honeymoon ending. I am very glad to have the pump for this though because of the swift changes I can make. I think endo's that want you to wait for the honeymoon to be over don't understand the pump, how it works and such. They need to remove all but say 15% of their beta cells, and then give them type 1 diabetes, and for the ones who give NPH, NPH, for the ones who give lantus, lantus, and not let them have pumps until they are out of their honeymoon. No injection aids either-of any kind. Luckily our endo is progressive, and aggressive. If it weren't for the insurance company not paying for a pump for 6 month post dx I might have gone for it a bit sooner. Anyways, I hope I don't get told off, or yelled at. I already know what it does, and can do when you are not in control, but it's not like it is an easy fix with or without the pump. It is just taking a guess and trying it. I have been fighting b/g's for months to no avail. I feel like Julia is hanging on a yo yo that I am trying to stop.

Well I had better get going. I will update tomorrow after the endo apt, and let you all know how it went. Jamie

Growing up

2006-12-29T12:05:00.000-08:00

Yesterday as I watched Julia play at Pojo's (an arcade with bumper cars and a merry go round) I noticed how much Julia has grown up recently. She chose to spend her 3 ride tickets on the bumper cars this time. She didn't even want to go on the merry go round which is her usual choice. She was so full of fun, and was ramming into everyone. It was kinda funny to watch this little tiny girl backing up as far as she could, and then ramming the bigger kids as hard as she could. She was giggling so hard each time she would hit someone. She liked bouncing up out of her seat - well as far as she could with the seat belt.
She has also developed her own sence of style lately. She looks like a modest 80's Madonna, lol. She got some black boots that are pretty 80ish for Christmas, she has decided that they go well with her jeans, and jean jacket, and a pink or purple tee shirt. Then of course she has to add jewelery, and a fuzzy scarf, and by the time she is done, and has painted her nails she doesn't look so babyish anymore. It is kind of a sad day, but she is growing up well, and I am very proud. It just happens to fast though, one day they are a baby, and then you blink and they are growing up.
I think we had a site fail today. I still can't find the reason, everything looked good even after I had taken it all off and apart. Julia was 326 at 10am, I corrected, and checked an hr later since I couldn't explain. She had gone up to 398. I gave her 1 u which is half of what she should have gotten and she was 54, so maybe the correction just wasn't working yet. Hopefully the rest of the day goes better. I hope it isn't another basal issue. We have had to up her basal the last few weeks, every 4-5 days. We were doing a basal of 3u when we started pumping in early Nov, and now are just below 6u a day. Oh well, we will see what happens.......

2006-12-27T11:32:00.000-08:00

Julia's numbers have been good, but she is taking 60% higher dose then pre illness still. I am hoping this doesn't mean the end of the honeymoon, but our dose has snuck up with each illness, and stayed soooo it probably is the end of that stage.
I find it sad that the honeymoon may be ending. I have had some hope that as long as Julia is making some of her own insulin, and has her own beta cells, that there may be something that can be done, something that might help. Of course knowing that even if there were a sudden breakthrough tomarrow, the ammount of time it would be held up in the FDA would be to long. So it was a small hope.

Christmas was great. Julia got to teach all of her dad's family about T1D. She really liked knowing more then some of the adults. It made her feel special.
We sang the diabetes version of 12 days of Christmas on Christmas eve, and it had Julia cracking up. She then told me that unless it was a cure she didn't want any D stuff in her stocking or under the tree. I didn't buy any anyways, but I sure did feel bad that she would think that the items from the song were going to be her presents.
We had 3 family events, and all went well. My biggest issue was how to cover juice, suckers, hot coca, and other rapidly digesting forms of strait sugar. If anyone knows the answer to this one please let me know. I was ready to throw all sugar out the window just on principal by the end of the 3 days of parties. However, we all survived, and fought b/g's the best we could. It was true combat, but I refused to let it get the best of us.

I hope everyone had a merry Christmas, and have an awesome newyear!

2006-12-22T12:52:00.000-08:00

The numbers are still bad, but the last time Julia was ill the numbers stayed higher for a while. I really like having the pump for this because I don't have to wait 3 days to change the basal again, and I can be more agressive when I make changes as well. Before we were only making corrections by 10% every 3 days, now I can up the basal by 20% every 2-4 hrs, and know that if I mess up I don't have to chase lows ALL day, and night. Other then that everyone is healthy again.

We recived a suprise a few nights ago. We are not sure who did it, or who to thank, but our doorbell rang around 9pm the other night. There were 3 boxes with wrapped prestents in them, and a new bike and helmet for each kid. There were names on all of it, so it is someone who knows us, but I'd really like to know who to thank. We let the kids have their new bikes the next day since they had seen them, but put the presents under the tree for xmas morning. This really means so much to us, since we had only enough to buy a few small presents for each kid. Not that they need alot, and we usually don't go overboard, but we usually do better then this year.

We did our baking yesterday. Julia helped the whole time. She loved it, and wants to be a cook. I started teaching my kids to cook a few years ago. Each child has a night that they help with dinner. They only do tasks that fit with their age, and sometimes it can be a challenge to find something they can do, but it has really made them less picky eaters. Since making veggies is the first thing they all learned they all love most vegtables, oddly enough. Anyways, Julia's b/g shot up, and I was thinking she had probably eaten some dough, or frosting, or something. I was about to just correct for it when I noticed on the home screen that her temp basal wasn't running. I could have sworn I had set it that morning for 24 hrs, but I guess I made a mistake. To prevent it from happening again I decided to write down the original basals, and just make the ones for the temp basal permanent so I don't mess up again. It's easier for me that way. Now I wont have the issues of days melding together at least.

Well, I had better go finish all that I need to do. I hope everyone reading this has a Merry Christmas!

What Julia wants for Christmas....

2006-12-18T11:00:00.000-08:00

Joey, Connor, Julia, and Shane with St, Nick
Connor, Joey, Shane Sr. and Julia decorating gingerbread
Houses at the Christmas party
Julia, licking the frosting off of her thumb after putting the final touches on her house
We went to the mall to see Santa yesterday. Julia, when it came her turn bounced up onto Santa's lap, and pulled out her letter that she had written all on her own. When he asked what she wanted for Christmas she opened it up, and started to read it to him. "Dear Santa Clause, Thank you for the horsies you sent me last year. I have been very good this year. I know you are magic, and I would like a cure this year for Christmas." Santa, looking a bit alarmed asked "a cure for what?" "Diabetes" Julia says, looking at Santa like he should know this. This mall Santa, who had just been asked for a Red Ryder Bee Bee gun for Christmas by Julia's 12 yr old brother Shane, and who I might say pulled it off without skipping a beat, saying you'll shoot your eye out, paused for a moment, I am sure thinking what to say. He then looked at Julia, and told her very sweetly, and sadly that he hadn't figured out how to use his magic to cure Diabetes yet. Only for a moment did the twinkle leave Julia's eyes, she then replied, then can I have a doodle bear, or a care bear? (I think at that moment Santa would have even agreed to a real live pony.) There was some discussion to colors of care bears, and Julia hopped off of Santa's lap with the coloring book Santa gave her, we headed for the clowns who make balloons for tips, and pass out cards in hopes of lining up business for the next year, Julia asked for a monkey on a hat, and then we went to Mrs fields to get some of their mini cookies. Julia didn't say anything after that about a cure, and she didn't seem disappointed. She was her normal, happy, bouncy self. I really expected her to be down after that, but she wasn't. She is so strong. She is my hero.

She is also the hero of a little girl..... We went and had Julia's ears pierced on Saturday. Julia was both excited, and nervous. She asked if it was going to hurt, and I told her it probably would, but would be like putting an infusion set in. There was a little girl a few years older with pierced ears who was watching. When they pulled the triggers, and the ear rings went into Julia's ears she didn't so much as flinch. Julia's dad Shane was standing next to the little girl, and overheard the little girl comment on Julia's bravery. The little girl then walked up to Julia, and told her that she had cried when she had her ears done, and that Julia was her hero for not even crying a little. A man who was paying for some jewelery told Julia she had nerves of steal. Julia was so proud. She then told me that having her ears pierced does not hurt as much as changing an infusion site. Julia ran a little high for the next 24 hrs. I was thinking it was from piercing the ears, but low and behold, last night the inside of Julia's right ear started to hurt. I gave her some Tylenol, she had a slight fever, 100.5, and she was able to sleep. I did a 11 b/g check, and she was normal. I decided at 1 to check again b/c I could hear Julia moving around. She was 454!!! She had small ketones. I corrected, wondering if it was the pump, or illness. She was still a little high 2 hrs later, 253, so I increased her basal by 30% for the 4 hrs until breakfast. She was then 136 at breakfast. Her ear no longer hurts, so hopefully that was a minor virus that was easily taken care of.

We went to the Christmas party for our local Diabetes Youth League. It was alot of fun. The kids got to make ginger bread houses, sock snowmen, and ornaments out of a dough made with apple sauce, Cinnamon, and Elmer's glue. They pressed all spice into the ornaments to decorate them, and they smelled really good. We had a yummy dinner, and desert, and then Santa showed up to pass out presents. We went home after that. Julia was getting tired and moody. It was really close to bedtime.

Ick!!!

2006-12-15T11:33:00.000-08:00

After a little over a week of nursing sick kids back to health it is now my turn to be ill. I have the stomach flu that has been passing through our house. I feel green, and look green. I have been trying to sip, and hold down water with no luck. I rested this am. Luckily Julia is very good, and will color, or watch tv while mommy is ill. She is at school now, and I have to get caught up on chores so that she can have her tea party after school. If I continue to feel this bad we will have to cancel, maybe just send cake home to her friends or something. I hate this!

Julia got over all of her illnesses, and is doing well. Until this am I was pleased with how well her numbers were coming along, but today they just keep climbing, and I am wondering if this means we are going to see another illness. I sure hope not, this has just been enough.

Joey felt ill last night, so he checked his b/g, and it was 189! I can't believe he is checking it on his own. It is kinda odd, but I guess since my kids have grown up seeing it, it isn't something new to them. We have Joey on a med that they think may make a person insulin resistant, but the number of people taking the med who were dx'd with T2D were not more then the number that would be dx'd in people not taking this med. Joey, knowing this, has agreed to check his b/g twice a week. Once post meal, and one fasting. The check he did himself wasn't requested, just something he thought would be a good idea. Joey has also been sick so that could be the reason for the odd number as well. It is by no means dx, but I hope this doesn't mean we will see more, or be at the endo's office with another child here soon.

Our Christmas party for the Idaho diabetes Youth League is tomarrow. We need to bring a side dish. I am not sure what to bring. Should I go low carb? Should I stay away from glutein? Should I just bring a normal dish that I would bring to any other party? The kids are excited. This weekend is going to be so busy though. We are taking Julia to get her ears pierced tomarrow, and we are going to see santa, and get pics of the kids with him. Then we will go visit grandparents, and then go to our party. Sunday should be calm though. Shane is working on a car, and I plan to do laundry that I would normally do monday (if I feel better, and don't get anymore illnesses) The children can play, or veg out. They need a down day. The few days before Christmas are going to be mad. I can't believe it is already nearing Christmas, and the new year. This year has flown by. Well, I need to get going, and at least get a few minor things done.

Ranting, venting, and rambling, but hey it's just a blog!

2006-12-12T10:57:00.000-08:00

Julia is better, well, not running a fever. SHe still has a cough, but it isn't bad, and her runny, stuffy nose is still there. She looks alot better, and is my happy girl again.

Last night I was watching some show, or another on discovery health. It was talking about Celiacs. I know this is going to sound odd, but I am so greatful we don't have Celiacs. I would choose D over it. I would also choose D over a food allergy. The thinking behind this is that alot of foods are made, or shipped, or in proximity to others, and it would be so hard to keep track of what was made around what, and doing a very strict diet isn't any fun either.
However I then started thinking about long term effects. Are there long term effects of Celiacs, or a food allergy? There are for D. There are also life threatening short term effects for D, and illness becomes more of a danger with D.
While I was staring off into space thinking about all of this DH asked what I was thinking about. About this time my thoughts changed to a different tune, but still kinda by the same artist. I had epilepsy as a child, and I was able to somewhat grow out of it. I say somewhat because I had some febral (from a fever) seizures in May, but it seems to have been an isolated insident. I had to take some rather strong meds in order to control my seizures. I did not do well in school, and I only had a normal childhood part of the time. I played soccor, and I loved sports, and being active in general, but every time my meds were adjusted I would be in a zombie like state, sometimes not snapping out of it inbetween adjustments since some of them took months to get used to. I now have some minor bladder issues because of one of the meds I had to take. I also can't stand taking anything that dulls my mind. I don't like to drink, I hate both OTC, and perscription drugs that make me drowsy, or lathargic. Anyways, back to DH's question. I told him where my thoughts had been wandering. I told him about the special on Celiacs, and my friends DD who recently almost died from a reaction to peanuts. Her throat started to close, and no one knew what was going on until it was pretty bad, and she could hardly breath. Then I started in on epilepsy. The things I had gone through, and the things I have seen other go through. I had alot of friends with epilepsy as a child. It seems people with a disability in common seem to connect. We were all in different clicks, but we were also all friends, and hung out. If any one of us had a seizure at school the rest of us were there to "potect" the one who had the seizure as kids can be cruel, and sometimes people think shoving a spoon in a seizing persons mouth is a good idea when in reality is dangerous. A seizing person cannot swallow their tounge, and if they bite it, it is better then having a spoon lodge in the throat, or not being able to breat because of the wallet shoved in the mouth. There were 10 of us at my school who had epilepsy. Some of us grew out of it, and some of us still have to take meds, and manage it to this day. One of my friends called me the other day, and she is having to have part of her brain removed. I find this odd because I had talked to a teacher at Julia's school who's DD is going through kinda the same thing. Anyhow I guess this is how it all really started as far as this thought proscess. When I got the news about my friend I though about how greatful I was Julia didn't have epilepsy, but then I thought about my case where now I am ok, no more managing, or taking meds, no more tests, or specialists, and it wasn't a forever deal. It could have been though..........My uncle's is............So Shane when I told him I was pondering all of this, and couldn't decide which would be worse automatically said that Diabetes is the lesser of the two evils. This is coming from a person who has had diabetes for almost 25yrs so I think he is a bit biased. Sometimes diabetes is hell, but his case has been pretty good. No major issues, or complications, and unless he is ill it is easily managed, and even when he is ill he manages it pretty well. To him it is just life, and it is no big deal. I still don't know which I think would be worse, but I do know that I can't trade one dx for another. I know that it wont change. I am glad it isn't something that is fatal in most cases, and that it is treatable with a good sucsess rate. Plus the advancements in technoligy are probably the furthest out of the non deadly if treated cronic illnesses. Then there is the cure aspect of it. We as dieabetes effected families are in bed with, and at the same time at war with all kinds of other diseases, even the different diabetes groups squable over funding, and compete for funding, and membership. Some people say stem cell research is the key, but I am almost doubtful that they will be able to cure. I think that at most we will get a better treatment from it. I believe in the cure like I believe in santa. I love santa, but santa is more of an idea, or a feeling. I hope with all of my heart that there will be a cure. I think it is a good idea, but I think that there are just some things that are incurable. I don't think that it is possible to reverse it once the damage has been done, but I do think if they can find a good way to block the T cells that maybe it will be preventable, and offer treatment to those who are already dx'd. I don't think we will ever get away from auto immune suppresants, and that is what bothers me the most since it is a trade off. It is compromised health either way you swing it. But enough of this rabling vent....

Julia's Bday is 2 days away. It takes me back to the day she was born. That year there wasn't much snow. She was born in Utah, in a area that gets a few feet of snow every winter at minimum. The morning I went to the hospital to have her induced (I had horrible gal stones, and needed surgery) it was like a blizzard. I remember watching the snow out the window as my contractions came, and went. She was born at 6 lbs exactly. She had a perfectly round little head, and looked so much like a little cabage patch doll. SHe was perfect. I got to hold her and nurse her before they took me back to have my tubes tied, and took her to get cleaned up, and checked out further. When I got out of surgery, and transfered to the postpartum room they brought her to me wrapped snug in a blanket, and they slipped her into a Christmas stocking. She was so cute, and the best Christmas present I could have recived. Julia was a suprise, and we had gotten rid of all of our baby stuff from her brothers because Connor was supposed to have been the last child we were going to have. Dad was going to have a vasectomy, but kept putting it off. I am glad he did put it off, or I would never have known the joy of having Julia as a daughter which has been so much fun. With, or without diabetes Julia has been a joy to parent, and to know. She has shown great amounts of strength, and so much love, and sweetness. She asked the other day for snow for her Bday, and when I told her I couldn't give her snow she said that she knows, but that is her wish. She finially decided on having her ears pirced, YIKES! She wants dimond earings like a pincess as she would say. So DH and I decided that we would take her to get her ears pirced, let her pick out some every day earings, and then an expensive pair for special occasions that will be put up, and get her a snow globe, and some new dress shoes. She has worn both of her other pairs of dress shoes almost all of the way out, se thinks they are fun to wear, lol. It should be a good Bda, although a busy weekend. We have a bday gathering with extended family this weekend, plus a Diabetes christmas party. We also need to get going on all of the fun christmas stuff like visiting Santa, and getting christmas cards off. The kids love to make little things to go inside of the cards, and make cards of their own. Ok now I have gone overboard on rambling, and better stop.

2006-12-10T17:49:00.000-08:00

Now we have swung the other way. Instead of the stomach flu with lows, we have the regular flu with fever, cough, and all of that fun stuff. Luckily numbers, and ketones haven't been to bad, this far at least. Connor had this while Julia was going through the stomach flu. I tried to keep everyone away from them both, and keep them seprate so that they didn't catch each others yuck, but they decided to trade, and share it with me, and their brothers as well! I am going to see if I can get some sergical masks for next time, lol. I have had the deluted bleach out in full force, but it still didn't help. Oh well, maybe we can find away to stop the sharing of various viruses next time. I think this is one of the worst things about having kids go to different schools for different grades. It seems like we get different illnesses from different kids, and they never seemt o stop during the cold/flu season. Well that is my rant. That's life!

Update on Julia's stomach flu

2006-12-08T15:23:00.000-08:00

Large ketones. Low, and lower side b/g's, and not one person has responded to the messages left at Dr's offices, CDE, or GP. I think maybe they all knocked off early? She is still holding down food so if I can get her ketones down, and she is still holding stuff down I will go ahead and keep her home, but if she starts throwing up again, or I can't keep her b/g up, or get her ketones down I will take her to the E.R.

Nicole, Thanks for the replies, and all of your support, and encouragement.

Our endo called earlier, and just to add another update we were told that we don't need to go in for starvation ketones. I guess if you are not eating, or can't hold anything down you get what is known as starvation ketones, kinda like aktins. They are not the same thing as DKA. I did not know that. I wonder what the difference is. I will have to ask, and find out. If Julia's b/g wont come up, and she wont hold anything down, or she is high with large ketones, or she is dyhydrated I will have to take her in, but we had negative ketones before bed so I think all will be ok. I can't belive how quickly they left after I got some good carbs in her!

The dreaded stomach flu

2006-12-08T11:02:00.000-08:00

Last nigh Julia woke just before midnight saying her tummy felt nasty. I checked her b/g, and it was normal. I pulled her into bed with me, and tried to comfort her the best I could. Then came the puking. She threw up, luckily I had grabbed a bowl for a catch before cuddling her so she didn't hit the bed. I got her to the bathroom, and when she finished I helped her to get into the shower. I help her brush her teeth, and tuck her into bed. Not but 10 minutes later she is dry heaving. This continued for about an hour on and off. Julia's b/g starts to drop, and she isn't going to even hold down water. She is at 75, which isn't bad, but it isn't really a safe b/g. Ketones are only a trace. I get her to hold down 2 oz of gatorade. I check her every 2 hrs, and she doesn't go above 100, but doesn't drop below 80. Ketones are small in the morning, but I am able to get more gatorade in her with a little bit of insulin. She did so well she was able to eat a lunch of 1/8c apple sauce, and 1cup of broth with 1/8c of rice in it. I gave her her insulin for it, and prayed that she would hold it down. She has so far, an hour later, and only has a trace of ketones. I am assuming the ketones are from lack of food rather then because of b/g since I have checked every 2 hrs, and she has been no where near high. I am so glad that we are almost done with this *I hope* and that our plan has worked this far.

Changing the site of the site!

2006-12-07T18:14:00.001-08:00

We recently changed the area that we were doing Julia's insertion site. We moved from the tummy to the thigh for about a week. Julia's numbers started to go high, so I made adjustments until I got it right. We then moved back to the tummy yesterday. When I did this I didn't think about changing it all back. So I change the site of the site, and Julia hits 39, correct, get her to 80, and give another 10g because she is going to school. She hits 37 before resess! Teacher give juice, and 2 glucose tabs, Julia is a happy 120 when she gets home. We go to the pharmacy, and she cries because she can't have the whole store which is so unlike her, recheck in the car because it finially dawns on me she is probably low, she is 51. Get in the house (I live 4 blocks from the pharmacy) give her a 15g banana. Dinner number is 91. Not to shabby, but I bet she is going to drop again, so I start brain storming, and I had a moment of Duh to me. I need to drop the basals back! DUH! I do, and it goes so perfect. No more lows, no highs either! I guess with all of the new things to learn there will always be something for a while. Lesson learned, always change the basals back when you move the site back!

Here we go

2006-12-04T06:53:00.000-08:00

We go to the neroligest today. Wish us luck! I will update when we get back. Hopefully we know more by then!

Well, we are back. She doesn't seem to have any nerological issues, and the migraines are only a few per month, so we are going to look for triggers, and we also have a script for a med to take during an episode. We will go back next month, and see how it goes. Hopefully we can get it pinpointed so that we can just avoid them, and not even have to treat them!

What would you do with unlimited funds?

2006-12-02T14:13:00.000-08:00

A few weeks ago I had a dream that I had won the power ball. (not that I play it, so I don't see how :) ) I woke up right after my numbers were drawn. As I made my way through my morning I was thinking about what I would do with all of that $$$. It kinda made for a fun morning. One of the things was to start a foundation. This foundation would help children and adults who were above the guidelines for state health insurance, and who do not qualify for insurance privately, or through a job, or who's medical insurance would not cover a pump. Then I started thinking about what would be needed in order to assure that the foundation didn't get scammed. So I started thinking about proof, and then how could I ensure that those who did get one could afford supplies? There were allot of things that I would think about while making long drives, or doing some chore around the house.
What I came up with is this: The foundation would buy any of the 3 major insulin pumps, Cozmo, minimed, or Animas. It would also buy 12 boxes of infusion sets, and 12 boxes of cartridges for each person it bought the pump for. However the foundation would charge $1,000 for this which is allot less then the pump, and is actually less then 12 boxes of infusion sets. By asking for the $1000 the foundation would pay out just over $7000 for the pump, and supplies, and by charging hopefully it would ensure that the person who is receiving the pump would not end up making a profit off of it, and that they would actually use it. But then the question came about that what if after that year they couldn't afford infusion sets? Or cartridges? So I would have to make a way to ensure that there was help yearly for those things, but still only if there was no insurance to cover the costs, and they did not qualify for state assistance. There would still need to be a small fee, but not as large as the one for the pump with supplies.
So in the end, to serve 10 people per year after the first year it would cost roughly $100,000.
I would love to do something like this someday, if that is I could ever find a way to find that kind of money. I would love it if everyone who wanted a pump could have one, and to know that people were not going without because of money issues. That is one of the saddest things. Here in the United states we have so much available to us, but what it eventually comes down to is $$$ if you don't have enough, you can't have it. Now I do know there is a program through the JDRF that serves children, and another program ran privately through a man who has diabetes, but he only allows for minimed's that have been used, and who knows if you would get a warranty with it, plus you have to prove you can pay for infusion sets so you probably have to meet an income guideline, or something like that. I would like to take all of that worry away. In allot of countries they have medical funded through their government, which I am not sure that, that would be something I would want or not, since it seems to be so hard in those areas to get the latest, and greatest. I guess each option has it's downfall, right? Anyhow, I am going to do it if I can ever figure out how to raise that kind of money. What would you do if you had that kind of money? Donate to research would be another biggy for me, plus if I had won the power ball you'd better bet I would buy a bigger, nicer house, and new cars, and probably travel.

2006-12-01T21:36:00.000-08:00

Things turned around after dinner. I sat at the table, and read a little news letter that our local realistate office has put out. It changed the way I have been seeing my life lately, I think by making that mental change, maybe things will go better, or at least it wont feel like a day that can't end soon enough. Below is the article. It has been around the web in some form many times. I hope you enjoy. BTW, here is a riddle. The answer will be at the bottom of the post.

What is so fragile that when you say it's name you break it?

Santa - Alive, and well, author unknown

Santa is alive and well, and we are on his team.

I remember my first Christmas party with Grandma. I was just a kid. I remember tearing across town on my bike to visit her on the day my big sister dropped the bomb: "There is no Santa Clause," she jeered. "Even dummies know that!"
My grandma was not the gushy kind, never had been. I fled to her that day because I knew she would be strait with me. I knew Grandma always told the truth, and I knew that the truth always went down a whole lot easier when swallowed with one of her famous cinnamon buns.
Grandma was home, and the buns were still warm. Between bites, I told her everything. She was ready for me. "No Santa Clause!" she snorted. "Ridiculous! Don't believe it. That rumor's been going around for years. It makes me mad, plain mad. Now put on your coat and lets go."
Go? Go where, Grandma? I asked. I hadn't even finished my second cinnamon bun. "Where" turned out to be Kerby's General Store, the one store in town that had a little bit of just about everything.
As we walked through it's doors, Grandma handed me ten dollars. That was a bundle in those days.
"Take this money," she said, "and buy something for someone who needs it. I'll wait for you in the car." Then she turned and walked right out of Kerby's.
I was only eight years old. I'd often gone shopping with my mother, but never had I shopped for anything all by myself. The store seemed so big and crowded, full of people scrambling to finish their Christmas shopping.
For a few moments I just stood there, confused, clutching that ten-dollar bill, wondering what to buy, and who on earth to buy it for. I thought of everybody I knew: my family, my friends, my neighbors,the kids at school, the people who went to my church. I was just about through when I suddenly thought of Bobbie Decker. He was a kid with bad breath and messy hair, and he sat right behind me in Mrs. Pollock's second grade class.
Bobbie Decker didn't have a coat. I knew that because he never went out for recess during the winter. His mother always wrote a note, telling the teacher that he had a cough, but all we kids knew that Bobbie Decker didn't have a cough, and he didn't have a coat.
I fingered the ten-dollar bill with growing excitement. I would buy Bobbie Decker a coat. I settled on a red corduroy one that had a hood to it. It looked real warm, and he would like that. "Is this a Christmas present for someone?" the lady behind the counter asked kindly, as I laid my ten dollars down.
"Yes," I replied shyly. "It's....for Bobbie." The nice lady smiled at me. I didn't get any change, but she put the coat in a bag and wished me a merry Christmas.
That evening, Grandma helped me wrap the coat in Christmas paper and ribbons, and write "To Bobbie, From Santa Clause" on it - Grandma said that Santa Clause always insisted on secrecy. Then she drove me over to Bobbie Deckers house, explaining as we went that I was now, and forever officially one of Santa's helpers.
Grandma parked down the street from Bobbies house, and she and I crept noiselessly and hid in the bushes by his front walk. Then Grandma gave me a nudge. "All right, Santa Claus," she whispered, "get going."
I took a deep breath, dashed for his front door, threw the present down on his step, pounded his doorbell and flew back to the safety of the bushes and Grandma. Together we waited breathlessly in the darkness for the front door to open.Finally it did, and there stood Bobbie.
Fourty years have not dimmed the thrill of those moments spent shivering, beside my grandmother, in Bobbie Deckers bushes.
That night, I realized that those awful rumors about Santa Claus were just what Grandma said they were: ridiculous. Santa was alive and well, and we were on his team.
Last Christmas my kids and I joined Santa's team. We did something that I intend to make a yearly event. We discovered a family who was struggling beyond what we ever had to endure. My kids and I went out, took great delight in shopping for presents for not only the kids in this struggling family, but the single mom as well. None of it was overly expensive, but each gift was chosen with great care. We took the presents home, wrapped each one with bright paper and ribbons, and signed each tag "From Santa", then waited. Early on that snowy Christmas Eve-just after dark-we sluethed to the house where this family lived. As luck would have it, the family was not at home. We stole to the front porch, and deposited the large bag of gifts in front of the door.
The feeling we all had, pulling away from that house, was better than any present we could have received. It brought tears to my eyes to see the looks of pure joy on the faces of my children brought on by their generosity. And I was fortunate enough in the weeks following Christmas to be in hearing distance as this mom told someone about the "goodies" that Santa left on her doorstep. The tears in of gratitude in her voice told me how much she appreciated "Santa's Team".

That story was so touching. The year after my dad passed all of our neighbors did stuff like the 12 days of Christmas, or dropped a small package with cookies, and hot chocolate, small packages that were little surprises. Christmas that year at the beginning of December looked so bleak. It didn't matter if presents were there, or not. Nor did it matter if we had a tree. We were missing by a count of one, and it would never be the same again. My dad you see died in November right before the start of the holiday season. I don't think we celebrated Thanksgiving that year, and if we did I have totally blocked it. The things that neighbors did that year were astounding. We would come home to find our drive and walk ways shoveled after a bad snow storm, or a small Styrofoam cooler with a casserole in it. Today my two oldest were bored, so they went and shoveled random walk ways, and drive ways. They didn't ask, they just did it. That took me back, and that also reminds me of how lucky I am to have such sweet kids.
Now that I am gushing, and tears of emotions of all kinds are running down my face I am going to stop, but to say be thankful if you have warm clothes, medications, and supplies that are needed, food, a warm house, but most of all a loving caring family no matter what kind of family it is. It may include friends, extended family, neighbors, anyone really.

Answer from above: Silence

Silence, how sweet it is. With four kids we generally have a fun rowdy house. We end up with more then our own after school and on weekends with our kids friends over. Silence is a rare commodity in our house, but when we do have it sometimes it is lonely. I waited for years thinking of all of the things I would do when my children were all in school, and now I find myself instead of reading a good book, or relaxing enjoying the peace, counting the moments until they are home. I do use the time to work out, and do house work which was part of my plan, but I thought I would have adult lunches, and go shopping on my own. Nope, it isn't as fun as I thought, not that I don't ever go have lunch while they are at school, but it isn't as fun as making apple mouths with PB, or watching a child smile with a cut up orange as their teeth. Who would've though? Certainly not me.

An interesting day to say the least

2006-12-01T13:57:00.000-08:00

I woke up to my son saying we had all slept through our alarms. It seems we had a minor power failure during the night, and someone had robbed the batteries out of the alarm clocks. So no B/G checks were done, and we woke 2 hrs late!
Hubby, and I jumped out of bed, woke the rest of the children while I frantically checked Julia's b/g. B/g was 139, whew. I check Julia's infusion set, and site. All looks good. I go get dressed while Julia, and everyone else is rushing to do the same, make my way to the kitchen and pop down 4 slices of toast while starting the coffee. Grab some yogurt out of the fridge when I here a blood curdling scream coming from the bathroom. The water had turned cold on Connor. There stands a shivering 8 yr old dripping wet, his brother had taken both towels out of the bathroom, so I grab him a towel while I remove me heart from my throat, and now Julia is crying. Oh man, I knew this was going to be a day. Julia had wet her pants because her brothers had taken all of the bathroom time. So I calm her down, and help her to clean up, and all is well. I step outside, and start my car so it is at least it is a little warm. We leave, and I drop my kids off one by one. When I get into the parking lot of the last school I stop for a child who is crossing the cross walk that goes across it, and bump. Someone slid into my bumper. I ask Joey who was getting out, and Julia who was strapped in if they are ok, and all is good. I get out to check the damage, there is none to either car. I ask the other mom who is climbing out if everyone in her van is ok, and she says yes, I think she is having one of those days, too because she is about to fall apart. After reassuring her that it is ok I finally make it back home. I just wanted to camp out, and not leave, or anything, lol, but that isn't possible so I heat the toast that was forgotten , and Julia and I have breakfast before having to go out again. We go to the doc office to get her second flu shot, and the place was a zoo. Luckily my day was turning around. Despite the madness we were able to get in quickly, and get out just as fast. We make our way through the rest of our day, I take Julia to school, and decide all is well. I knew she had a sub, but it is the regular one so I am not worried at all. She knows about Julia, and has been there a few times. I go the whole time without a call, and find out that the SN wasn't there, the sub sent her to the office, the office sent her back to class. Julia made the decision to test herself, but not knowing what the numbers were.......... Anyways 183, a little over target, but at least she wasn't low. As she tells me this tale of her day after school I am wondering how we are going to make it through the months that are ahead when Julia teacher goes on maternity leave in January. We have 4 people trained at the school to help, and none were there when they were needed. 2 were at lunch, and our SN couldn't make it in time because of an issue at another school. I think it is time for the 504 plan that I have been putting off, but even that wont secure that all days work out, and today was just one day gone wrong out of allot of days that have gone right. Now I am getting ready to start dinner so we can eat early, and I am hoping against all odds that our kitchen doesn't burn down because that is how our day is going. Wish us luck.

What a Day

2006-11-30T16:39:00.000-08:00

There was a website that I found really supportive up until now. Yesterday I chose to share some information about myself, and a choice I made as a parent in regards to diabetes. The thing I shared worked great for me. Well, as a result I was attacked personally by a moderator of the site, and my words were twisted. I am no longer responding to that specific thread, even though she has. I also don't feel like I can share, or anything any longer. So I think I am going to leave. I can't figure out how to delete my account yet, though, and maybe I can't. If not I will just email, or talk to those who I have made friends with by other means. I am not sure if I should say anything to any of those who I have made friends with, or not if I do leave, or if I get kicked off for the deal with a moderator. There are other forums out there, but I don't know if I would want to join another. Well, enough of that gripe.

Julia had another migraine today. I am so glad she has a neurologist appointment Monday. I really hope it is nothing but migraines. Not that migraines are good, but it could always be worse, right?

The Christmas parade for our little town is this weekend. It should be allot of fun. However they throw so much candy. Maybe I will have to do a candy trade, or something like that. The kids are all excited, and they have been helping me to decorate for the holidays. It is such a huge chore. I hope we are done by Saturday. I have been complaining all week that it is so cold, but we don't have snow. Well tonight we looked out the window, and guess what? It was dumping a ton of snow on us all. Tons of fun. I hope it snows enough to get a snowman up. We only had a good amount of snow for one day last year, and then it melted off quickly, plus the snow from my yard was all in the snowman the children had built with their friends. They had so much fun, though.

Well, I had better go finish dinner.

2006-11-29T12:37:00.000-08:00

If it isn't one thing it is another. I guess that is just how it goes. Life is like that. Anyways, I am back to no sleep. Julia had a bad day of lows yesterday, and there were even some at school that we just couldn't get up to a safe range. Today I decreased basals and we havered around 100, so that is better! We will do that the rest of the week, and see if we can keep numbers good this week. The pump is really such a blessing to be able to make sudden changes when something is going wrong. I am so glad we were able to get it under control today. I have been nervous since this am about how school would go, which sounds silly since it isn't even 3 hrs, but things just happen, and D doesn't go away, even for that short of a time.

Christmas is coming, and I want to stop time. This year has been so hard, not only financially, but that is a big factor. We stopped going out unless it was free or low cost, but we still had netflix, now we have cancled netflix, next will be the net as the contract is almost up with our ISP. We are having a house built through a local contractor, and I am not even sure how we are going to do that unless something gives. Our insurance WILL NOT give us more then 200 strips a month, and our useage is between 250, and 300 a month lately. At a dollar a piece that is alot. Then I found out that they only cover 5 sets a month! WTF is up with that when 10 is standard use per month, plus we can only order a month at a time, so it leaves me praying that everything gets here on time. Then there is DH's D. He doesn't have insurance as he does not qualify privately (we were able to get Julia on medicaid because of the fact that she did not qualify, and was under 18) I know that sounds awful, having to go that route for insurance, but when I filled her first perscriptions with a months supply of some things, and half of it for others it was around $800. Luckily some of it doesn't need to be filled monthly, like glucagon, but I refuse to use a lancet over and over. That would just make it that much easier to get an infection, but lancets are cheap, at least. I quit buying the sharps containers, and am now using coffee cans. I duct tape them closed and mark sharps and bio hazard all over them before discarding them. Anyways, hopefully the season will come and go in a flash since it is going to happen weather I like it or not. Enough of my pathetic issues .
I was reading that women who are pregnant, and have type 1 diabetes sometimes make some of their own insulin. Isn't that odd? They are doing a study to find out how, and why. Who knows, maybe that will help find a cure. I hope. I would do just about anything to have Julia, and Shane cured. Cross you fingers that one study, or another will pan out.

I better get going, it is almost time to pick Julia up from school.

We finished calling in numbers!

2006-11-28T10:17:00.000-08:00

We finished calling in our numbers today. It is a big milestone for me because now I am not worried about having to explain the changes I make. Our CDE during this time was great, though, and trusted my knowledge, and instincts. I guess I still see Julia's b/g's as my report card, and even though I can deal with them while I am going over them on my own I still feel kinda shameful when it comes down to reading them out when there is a high, or a low. Lately her numbers have been predictable, but we have had some highs we are working on. Also we need to make changes to her ISF, but I want to get the night basal set up before tweaking anything else.
We had our first kink, this morning. It wasn't bad. Julia ran in the low 200's all morning, so I know some insulin was getting through, and we needed to do a site change today anyway, but I was hoping to make it to bathtime tonight. The kink wasn't to bad, just a small one when I pulled it, and looked. Julia is wanting to do the insetions, but I am not ready for that yet. Maybe in a few months we will give it a shot, but I don't know if her little hands are strong enough yet to push those buttons, and if she could do it at the same time, so we will see. I am trying to find new ways to get her involved in her D care since she is such a take charge type of person, but alot of this just isn't easy to let your child do, and it is still so new. Wish us luck with our sites, and our numbers. I hope they stay good.

Sleep needed!!!

2006-11-27T08:01:00.000-08:00

I seem to have gotten my body used to staying up all night over the holiday weekend. On Saturday night I ended up falling asleep at about 2am. My son Joey woke me up because our HUGE black lab, Chewy had jumped in bed with him, and scared him. After getting Joey to go back to bed (he was ready to be up for the day) I couldn't sleep myself, and ended up watching old movies all night. At 5 I made a big batch of pancakes, and woke everyone at 6am to get them on the scedual for school. By 10 am I was done. I took a 2 hr nap. I tried to sleep for the longest time last night, and fell aslepp at about 5am. I slept until 7, and well, here I am. I am thinking about making DH go on call tonight for b/g's and taking an OTC sleeping pill so that I can sleep. I feel horrible, and exausted, but still can't sleep.
We were in Walmart yesterday, we have reached our limit of strips for the month, so now have to pay out of pocket, and needed some for school. I found the sidekick is only $28 and comes with 50 strips. It doesn't have a memory, but I get sheets sent home daily from school so it isn't a big deal. Our endo wont be pleased, but he isn't the one paying, I am. SO he will just have to deal with it.
I wish it were warm with lots of sun! It snowed last night. I can't belive it! Maybe we will get to go sledding this year! Now I guess I have to figure out how to keep the pump, and insulin warm. I wonder if those hand warmer things would work without getting it to hot? Anyways, I guess I am off to find ideas!

Tolerance, and understanding

2006-11-26T14:58:00.000-08:00

Julia's numbers are still running high, but are getting better. We were running in the 300's, and now are in the low 200's. I hope to have it sorted out by the end of the week. That would be nice, but we all know it doesn't always work the way you want it to.
I can't believe it is almost December! It has been cold in Idaho, but no snow. We moved here from Utah in summer of 05, and it has been so different. I didn't think it would be. This being our second winter I am not sure if it will be like it was last year, or if it will be different. I need to start figuring out how to keep the pump, and insulin warm, and dry while Julia is playing outside without making it hot.
I found out about the Idaho diabetes Youth League recently, and we are going to go to our first activity, a Christmas party in a few weeks. I hope that by connecting with, and seeing other with Diabetes that Julia wont feel alone. Not that she has expressed those feelings maybe because she has seen her dad take care of his diabetes since she was born, but also she has a really good friend who likes to learn about it, and who even though is only 6 has been so supportive for Julia. She has never said anything wrong, and just has that sense, or something because she always knows the right thing to say. We had a little girl from Julia's class over to play a few days ago. The little girl was really sweet, but kept on trying to get into Julia's meter case to play with her back up syringe, and extra lancets. It was really hard to figure out. I don't like keeping Julia's meter out of her reach so that if she feels like she needs to test she can. I feel like it is important to do once a child can do it on their own so that they have that power. they still need guidance, and supervision, but letting Julia have her meter is something I feel strongly about. Eventually we ended up clipping Julia's meter to her so that her friend couldn't get at it, lol. I am sure once she has been around for a while, and sees Julia test she wont try to play with the lancets, as for the syringe maybe she will figure that out after seeing the lancet, and having it explained that the needles poke, too. I do hope that by meeting other kids with Diabetes that she will find more people her age who are more understanding. That is the best gift, (tolerance, and understanding) that a person with diabetes could have aside from a cure.
Anyhow, enough for now. Time to make dinner :)

2006-11-25T00:49:00.000-08:00

Another sleepless night, not that I mind, or could sleep while I am worried about her b/g, but I just wish that we didn't have to worry about this. Days like today, I hate diabetes. Most days I can tolerate it, but not when I can't fix it. Julia's blood sugar has been good during the day, but horrid at night. She has been running ketones all throughout, even during times of good blood sugar. She looks ill, has been complaining of headaches, and looks even thinner then she was before. I have been trying to push water, but her lips still look dry. I am starting to wonder if she is dehydrating for some reason. Tomorrow morning I will call and see if they can squeeze her in, or at least let me get her weight. She says she has a sore throat, so I am wondering if she is getting ill, or if she is just dry. I am at a loss.
I decided to change her site, and open a fresh bottle of insulin so that I know it is all good. That way at least there is no question about the pump being the reason she is high.

As I sit here awake, I have been thinking allot about the question of how do you do it? How do you handle having a child with diabetes? My usual answer usually goes something like this: You just do, you do what you have to in order to keep your child alive, and well. However, sometimes I think I should go a bit further, maybe make the answer a bit more shocking. Like explaining the nights like tonight, the tests, the worry, the waking your child to go pee, or because they are running med ketones and they need water. I don't think anyone would listen though. Most of the time I feel like everything I say about diabetes to a non D person, or someone who has no clue that there are different types that it all goes in one ear, and out the other. After all, it really doesn't effect them, and it is something that I hope each, and every one of them never has to have effect them. I would not wish this on my worst enemy.
One thing that is truly irritating is that the different foundations for diabetes seem to be against each other. The JDRF actually paid a couple of million to a few different groups to prove a researcher wrong, however they did not succeed. Instead they proved that her theory had a 50% success rate. Then there is the ADA, and JDRF which don't seem to get along. Both have great information, and the ADA is great for finding resources to help fight schools, or get equal rights. Sometimes though it feels like most of the money the ADA raises goes to type 2 diabetes programs, and that they use the faces of the children to benefit that cause. Maybe someday they will all ban together, or better yet we wont need them because type 1 has been wiped out, if you get it they can cure it.
Well, it is almost time for the last b/g of the night, and the toothpicks holding my eyes open are almost ready to fall out.

Thanksgiving was great!

2006-11-24T00:05:00.000-08:00

Thanksgiving went better then I could have hoped for. We had good numbers, and no one tried to tell me not to feed her this or that.

We have been running on the high side the past few nights. Our CDE thinks it is related to growth hormones. I think she is right. We are going to slowly increase insulin intake at night to see if we can combat it a little. It is really hard just making small changes. I wish there were a magical formula one could just type in and know what dose to give. I guess Patience plays a big role in diabetes as well, weather I like it or not.

We switched infusion set types yesterday, and I have to say I do like the ones we now have allot better. They seem to be more comfortable, and we haven't had any issues with the set this far at least.

Does anyone watch Little people, Big world? Julia was watching it with me, and natural 5yr old question asked why the adults were so tiny. I explained that they have what is called dwarfism. She later said that everyone has their own stuff to overcome. I think she took that from the show we had watched. I agreed, and we talked a little about it. I think it really helped her to see other people with other types of problems. She is starting to get it, the fact that EVERYONE has their flaws whether it be diabetes, or something else. That makes me feel better about how she will handle all of this when she gets older. Some kids with diabetes really struggle in their teens to be normal, and quit taking care of their diabetes. Allot of kids have a hard time coping, too. So far Julia has been amazing. She has really taken a hands on approach, and has wanted to learn about how it works, and why, and how she can help take care of it. Sometimes she wants to do it all, but she isn't quite old enough yet, so that frustrates her. I am sure it will come soon enough that she is capable of taking care of this beast all on her own. For now she will just have to accept the fact of being a kid. They always want to grow to fast. Well I think I can finially sleep. I hope everyone had a wonderful holiday.

Happy Thanksgiving!

2006-11-23T12:38:00.000-08:00

Happy Thanksgiving all!!! Enjoy.

Thanksgiving - our first since our visitor joined us.

2006-11-22T19:04:00.000-08:00

Tomorrow is Thanksgiving,
I am a nervous wreck.
The holidays are coming to quickly,
I need to pause for just a sec.
Turkeys, and ham, potatoes, and stuffing,
enough to feed the crowd that is coming.
Those are not the things that are a worry,
something more, something that brings a furry.
Diabetes is the name of our uninvited guest,
he will show up anyhow in his nicest vest.
He will bring with him medical needs galore,
he will make it hard to enjoy life anymore.
No one will know what it is like to be us,
the families with diabetes, who are compared to great uncle Gus.
No one will know how many pokes,or the dangers,
not one will even share our angers.
We receive that pitied glance, the one full of dis pare,
hope our little ones don't notice, hope they don't care.
While they are getting their insulin, and a poky one more time,
everyone else will be eating, and laughing, and having a good time.
We will return to join them in the merriment,
always taking a glance at diabetes's entertainment.
The desert is almost in view,
and now it is time to choose,
pumpkin, apple, peach pies,
which will give us less highs?
As the night lingers on we head for home,
happy for the saying "when in Rome".
Our children had fun, we got to relax,
our kids got to have desert that did not resemble flax.
We say our prayers, blessing for all,
praying not one more parent will know this horrid fall.
We pray for the cure, we pray for our children's peace,
we cuddle them closely, as we poke them again, realising the pokes will never cease.
We read them a tale as we tuck them in tight,
give them water, and make sure all is safe for the night.
Two more checks still to come, diabetes is still there.
I will not sucomb, for diabetes I do not care.

The above was written (maybe not well), but to release some feeling of anger, and fear that I am feeling for tomarrow. I hope it goes well, and that all of the carbs are eaily counted.

My first Entry

2006-11-20T01:26:00.000-08:00

It is early Monday morning. I waiting up to check Julia's blood glucose levels before getting to sleep. I know if I choose to go to bed I just wont wake up for the alarm. So I wait.
Julia started using an insulin pump this past Tuesday. So far it is going really well, but has been alot of work. I know that the benefits will well be worth it though. She has had good numbers thus far, but I still want to see what is happening at different times of the night to make sure she isn't going to high, or to low. I guess I worry to much, but it is hard not to when you know that your child's life hangs in the balance of life and death, and quality of life. It is always a balance, and the act of making it work isn't as easy as it should be. There are many unseen variables that you have to try and account for. Sometimes even trying to predict how hard she will play at the playground so that you can give a little less insulin, or make sure her snack will cover her without sending her sky high.
Julia has been a rock through all of this though. She has taken it like I could have never imagined. After the initial fight to get her to let me check her blood, and inject her insulin which is at least ten pokes a day, she was ready to take charge. She has learned to check her own blood sugar, and she knows how to do various tasks to take care of her diabetes. She still needs supervision, but I couldn't be prouder. Julia is my hero for so many reasons.
Lately she has been counting down the days until Thanksgiving. She is so excited to eat turkey. She tells me every morning how many days are left. Then she tells me everything she plans on eating. I really don't think that little belly of hers will be able to hold that much, even if she only eats sample sizes of it all, lol. One thing that worries me about the upcoming holidays is that so many people know about type 2 diabetes, but hardly any know about type 1 diabetes. They are two different things, and it is so hard to explain it to someone who does not live it. Some of Shane's family knows a little, but most of the information they know is old, and outdated. Like diabetics cannot have sugar, that is not true for people with type 1. They just have to take insulin to cover it, and are better off eating it in moderation, just like everyone else. People with type 1 have to constantly monitor their blood sugar, or they can become ill very fast, where as people with type 2 can just check a few times a day. Type 1 is an auto immune disease. The immune system attacks the beta cells that produce insulin, and there is nothing I or anyone could have done to change the fact that my daughter has diabetes. She isn't lucky enough to be able to loose weight, in fact she is really skinny, which allot of people with type 1 are. She will have to take insulin either through her pump, or by injecting it with a needle several times every day just to live a healthy, good life, unless of course a cure is found that will work for her. People with type 2 diabetes become resistant to the insulin their bodies produce. They can sometimes exercise, and eat healthy, and control it without any meds. Sometimes they have to take pills, and after a while if they don't take care of themselves they will have to take insulin the way my daughter has, but they have a choice. That angers me that they get a choice, but choose not to take care of their disease. It angers me that my daughter has no choice, but takes a back seat to someone who could have prevented it, and who can control it with easier means. Of course since obesity is such a huge problem more and more people are being diagnosed with type 2, even children. Only about 10% of people with diabetes have type 1, so that is why no one really understand. I understand all of this, and I am not angry with specific people, or anything like that.
Well that is enough ranting for one night. If anyone is reading this I hope I did not offend you. Jamie