I hate T1 Diabetes

UPDATE!!!!!!!!!

2008-07-31T09:22:00.001-06:00

Thank you to all that have read and responded to this!!!! I received the following response approximately 1 1/2 hours ago:

Nicole
I’m really sorry about the article. It was a press release we received to be used as filler. I understand that Type 1 diabetes isn’t preventable and I understand that the article was not clear on that. I also know the challenges Hailey has faced in dealing with her diagnosis. I would be interested in doing an article about Type 1 diabetes and possibly include Hailey in it to show the challenges and lifestyle changes that come along with it and how she’s dealing with this as a child.
Once again, I apologize.

I will make sure to post when a correction is printed

For those that may be reading! Please help me fix this!

2008-07-30T21:43:00.002-06:00

I am so angry right now. We live in a VERY small town, this paper has done several articles on Hailey and now tonight I read this:

If you could please take the time to send an email to the paper I would really appreciate it. I intend to call them 1st thing in the morning and I also intend to send a very long letter to the editor as soon as I can calm down enough to make sense. This is like a kick in the teeth! Every person in town is going to read this and think of Hailey All of the awareness and work I have done has been squashed in this crappy article.

The following is the article that was put in last year about Hailey, the author left the paper a couple of months ago and obviously the new guy didn't pay any attention at all to old articles

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Photo Sharing - Video Sharing - Photo Printing - Photo Books

If you cannot read the scans please let me know and I will type the whole thing out. This paper is so small that they do not have a website. They do now have email so if you could direct emails to knewst@evertek.net I would very truly appreciate it. If you would like to call them I am more than willing to post the phone number.

REQUEST FOR CGMS: DENIED BY INSURANCE

2008-07-01T09:28:00.003-06:00

A little more than a year ago my daughter was origionally denied insurance coverage to the MM minilink. After one short appeal we won insurance coverage for this life saving device and my daughter's quality of life has improved dramatically.

Now I am trying to help a friend of ours gain coverage. She has been through multiple appeals and the insurance company is still stating "investigational"!!! You cannot put a price tag on the ways the cmgs saves lives and improves quality of life while saving the insurance company money in the long term!

CGMS will become the "standard of care" in the near future if everyone stands up and says "I DESERVE the best medical care available"!!!

Oprah Show Idea: Faustman vs Type 1 Diabetes

2008-04-27T14:12:00.001-06:00

Updated video

Oprah Show Idea: Faustman vs Type 1 Diabetes

2008-04-26T22:32:00.001-06:00

Please Oprah! We need you to do this show!

Invisible Mother.....

2008-04-23T14:20:00.000-06:00

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this ? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again. She's going, she's going, she's gone!?

One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe. I wasn't exactly sure why she'd given it to me until I read her inscription:
'To Charlotte, with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof, No one will ever see it. And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

The Will of God will never take you where the Grace of God will not protect you.

Top 10 Reasons I love our new Endo!

2008-04-18T13:59:00.000-06:00

10. Finger poke A1C which means a blood draw only once a year.
9. The endo answers all after hour/weekend calls.
8. Very thorough examination.
7. Office personel are friendly and talk with you not at you.
6. He is up to date on technology and prefers to use advancements. He is not hesitant to try the "new" stuff.
5. He did not belittle my fears about Mackenzie and told me I was justified in my fears with her!
4. He was able to get dh to participate and understand what I was dealing with.
3. I have phone numbers to reach a person anytime, day or night.
2. Spent as much time as we needed with them (3 hours!).
1. Listened to what I had to say and was impressed with our experience with the CGMS.

And just for fun ;-)
Dh says he is the smart twin of Apoo (Quick E mart)from the Simpsons. For anyone thinking about switching from an endo that they are not happy with, DO IT. I wish I had done this a year ago :-)

Taping

2008-04-01T09:55:00.003-06:00

Please keep in mind that this video does not show the prep which includes alcohol wipes and a barrier wipe. I make sure I am meticulous with keeping the area clean during this process to prevent the introduction of anything that may cause infection.

Photo Sharing - Video Sharing - Photo Printing - Photo Books

Cgms insertions

2008-03-30T17:53:00.002-06:00

The first video I got so worried about the camera that I forgot to remove the tape so you get the opportunity to see two insertions. Please turn the sound down, there is a lot going on in the background that is distracting. Hailey was a trouper considering she normally does not allow me to insert while she is awake but she was willing to do one for our friend Nae :-D

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Photo Sharing - Video Sharing - Photo Printing - Photo Books

If you have the time this is an interesting presentation

2008-03-26T15:21:00.001-06:00

http://www.diabetes-symposium.org/index.php?menu=view&chart=4&id=322

2008-03-26T15:14:00.001-06:00

Photo Sharing - Video Sharing - Photo Printing - Photo Books

Just so I don't have to keep searching

2008-02-08T16:04:00.000-06:00

Paranoia, delusions, and hoping I am crazy.

2008-02-08T14:24:00.000-06:00

Some days it is the little things and others it is the big. Unfortunatly lately it has been both but with different children. H's numbers have been off and so has her cgms, it really is amazing how much I have come to depend on this little piece of medical tech. Most sensors I can at least trust the trend, know where things are going, and have a good idea of how many points it is off. This last sensor has completly baffled me. Bouncing around for no apparant reason and off by 100 points one check and 10 points another. I think I am going to pull it tonight and give up. Sometimes we get wacky sensors that can be brought back "in check" with careful calibration and if need be a disconnect and recharge. This sensor has just been plain crap and it is time to give up on it. I suppose it is time that I have some bad luck with the sensors, things have gone too well for a long time.

I know those of you that know me are aware that I worry about M. My worry has become too much and we are going to have some tests run. As I wrote in my previous post we are testing her Saturday and she is going to flip out. The only times I have been able to get a bg on her have been around 4 hours post meals so I cannot get a really good indication of what is really going to happen. I tried to bribe her with a new webkinz last night and she was all for it until it came time to actually do the poke. We tried for a 1/2 hour but she just couldn't "I want to mom but I can't" She went to bed saying "I want a new webkinz but for some reason my body won't let you poke me" The numbers that I have been able to get recently are:

2/7 10:10 pm 135 Only ate 10 tater tots at 6:30 pm (3 hours 40 min since eating)

2/6 11:00 pm 100 Only ate 5 chips and no carb food (4 1/2 hours since eating)

2/5 10:00 pm 117 No food since lunch at 11:30 am (10 1/2 hours with no food)

2/4 11:18 pm 139 Had an accident at school, ate very little dinner (only a cup of spaghetti compared to her normal 4th and 5th servings) found hidden cups behind toilet again and 2 water bottles under bed (4 1/2 hours since eating)

Now I know these are not OMG numbers but coupling them with the fact that she has been "not making it" to the bathroom alot, sneaking water, and refusing to eat I am worried. I have been intentionally cooking M's favorite meals with no luck getting her to eat more than an ounce or so. Before H got really sick she started with eating less and less. The last week before she went into a coma the only thing she would eat was plain lettuce :( and she HATED lettuce.

I hope I am wrong, I pray I am going a bit crazy. My biggest wish is that dh is right and I am making this up. Anyone that reads this, please say a little prayer for us Saturday morning. If I am not wrong, I have a LONG rough road ahead of me. M will fight me tooth and nail to the very end.

I wish D had never entered our lives.

M getting tested

2008-02-06T10:26:00.000-06:00

This Saturday we will take M to the hospital to have blood work done. We have ordered HbA1C, Islet cell Antibodies, C peptide, and a bg. Too many symptoms that don't add up. Dh is not happy about it, oh well. I will not tell M until we get to the hospital lab. H has her regular blood work the same day so hopefully she won't figure it out too far ahead of time. She is going to freak out :-(

continued

2008-01-30T14:08:00.000-06:00

Obviously by my last post I had not slept enought LOL.. To make a long story short, the 2 year old cried all 5 hours up to Rochesterwith no sleep, all night long in the hotel with 4 hours of sleep(she wanted her bed), and all the way home from Rochester with no sleep. H's bg's were awsome the whole time (with the only exception being swimming which is normal for her) and M actual was pretty good. I think that will be our last long car ride until B is older and more able to entertain herself :-D At least I hope so.

First trip since dx

2008-01-25T23:15:00.000-06:00

and it went rather well. My Uncle passed away on the 14th after a long battle with cancer, unfortunatly the cancer didn't kill him. He passed away from host vs donor disease after a bone marrow transplant. His colon poliferated and it was all down hill from there. Soooo we were going to Rochester, oh man, 5 hours in a car with a hotel stay in an area that we do not know! Talk about nerve racking! I packed every single possible thing I thought we may need, insulin, sensors, syrenges, chargers, enough batteries for an army, tons of snacks, tapes, adhesives, well you get the picture. Lets just say the supplies had thier own bag :-O Dh was really good about it and didn't say anything but I know he was annoyed. I called the hotel to make sure there was a fridge, packed the girl's bags, packed enough toys for 5 kids, and we loaded up the car to go. Of coarse we get 5 miles out of town and the gps decides to quit working and someone forgot their nintendo ds soooo back home we go. Get everything fixed and make sure everyone has thier stuff and off we go again, hmmm that added a 1/2 hour onto how long the 2 year old had to sit in the car seat and should have had me worried but at the time I was certain she would fall asleep once we got going. Uhhhhmmm no, I was waaaaaay off on that assumption.

Just noticed how late it is and will finish this post later, so sorry :D

I got sucked in!

2007-12-18T10:01:00.000-06:00

Well it is official, I got sucked into the Christmas hype for the Wii
It was on both girls' Christmas list and since Hailey had to add in a cure and a trip to Hawaii I decided the Wii was going to have to do. So, I have been searching and hunting and stalking with no luck, that is until this last weekend. My dh got a tip that Best Buy had gotten in 42 so off he ran to the store only to find out that the employees had no clue what he was talking about, they just kept repeating "check your Sunday paper" Ok, obviously they got them in and they are going to stock them at opening Sunday. Sooooo we spend all day Saturday Christmas shopping (the bad mom I am, I had only bought one present before Saturday). After shopping from 11 Am to around 11 pm we went home and I wrapped every single present and hid them in the storage room (girls are afraid of that room LOL). Then I went to bed for 2 hours before I got back up and hustled my dh out the door (girls spent the night with grandma just so I could get the wii). We arrived at Best Buy 30 minutes later at 4:30 in the morning. To my shock there was already a pretty big line and I was really worried that we were too late. I went ahead and got in line, figured if I was going to haul my butt out at 4:00 in the morning when it was -7 I might as well give it a try. After standing in line talking for about an hour the talk turned to how many wii's there were going to be. Everyone in our "area" of the line was curious as to how many people were in front of us and if we even had a chance at scoring the much coveted game. The woman behind me offered to save my spot if I would go count. Off I go to the count and to my surprise I was number 30 in a line of 56 WOOHOOOO we were getting a Wii, now everyone pray that employees did not grab some up to rush off to ebay!. 4 hours later I am a VERY COLD very crabby proud new owner of a nintendo Wii! Score one for us. Now I had always promised myself that I would never do the black friday, standing in line all night waiting for the coveted new toy and technically I have kept to that, it wasn't black friday and I didn't stand in line "all" night LOL. Man I hope this game is worth it, my toes still feel funny :-O

Some personal thoughts on CGMS

2007-12-11T13:47:00.000-06:00

A few weekends ago we were at a Diabetes family weekend and they had a section where they were talking about the cgms. The speaker asked if anyone was using it and when I raised my hand I was asked to talk about it. I went the the usual, how it has made H's and the family's lives easier, how it has a learnin curve and how not to give up, blah blah blah. Sooo a couple of people asked some questions and I wanted to put the answers here also. Please keep in mind that these are our personal experiences that I would like to share, these are MY opinions.

Question:
How did you get insurance coverage? We were denied at our first request?

Answer:
We are fortunate to have my husband work for a self insured company. We were origonally denied but I was not about to stop with a no. These companies DEPEND on us taking no for an answer. APPEAL APPEAL APPEAL! I feel so strongly that if you go through the appeal process you can gain coverage. The more people that appeal the more companies are going to cover. The insulin pump was NOT covered from the begining. Lots and lots of people went to bat with the insurance companies years ago to gain the coverage that we now get almost automatically. The data is out there, the stories are out there, just do a search of the internet and you can find studies and testimony all over the place on how this wonderful technology has changed the lives of children. If you want the cgms to prevent lows ina hypo unaware child show the insurance companies how often your child has had sever lows. Every single time you talk to your insurance company write down the person's name, date, time, and lenght of call. Even better record every conversation and make sure you let the person on the other end know you are recording. Make sure you get a case manager. Ask for the companies specific appeal procedures. Get a letter of medical neccesity from your Endo. DOCUMENT DOCUMENT DOCUMENT. No one wants to be recorded in a converstaion that goes like this:

Insurance: No, that is experimental
You: No it is not, it is FDA approved
Insurance: Well accoring to our records it is not covered
You: So you mean to tell me that you are denying a life saving technology for my child without review? You mean to also tell me that the continuos glucose monitor is experimentatl even though it is approved by the FDA?

etc.....

Do not give in when your insurance company denies your claim. Stand your ground! The battle is worth so much, not only to your child but to the other children and families that are also trying to gain coverage.

Question:

My xx year old doesn't want to wear another site how do I convince him that he should try it.

Answer:

Ok, alot of people are really going to hate me for what I am about to say. Why do you give your child the choice? Was taking shots a choice? Was doing finger pokes a choice? In MY opinion the cgms is the same. It is a life saving tool that MUST be used. I realize that alot of people view it as your child's body so they should have the choice but did you get them a choice for shots /pump sites or finger pokes? If my daughter moves out and manages her diabetes on her own then she can choose what technology she does and does not want to use. Until then I will make the best possible decisions I can with the information available to me at the time. Yes this is your child's diabetes but for now you are managing it and you need to make the important decisions. All of this being said, my daughter LOVES her cgms, it allows her the freedom to be able to spend more time with friends and less finger pokes all while not being afraid of where her sugars are going and if she is going to go low. Your child may be totally against it but may find after some use that they cannot live without it. And believe me, I am NOT against a bribe to get things moving in the direction I want them to head. If a Webkinz or some makup and jewelry are going to get her on my side then I can deal with that.

Questions:

We tried the cgms and it was never exact.

Answer:

It is not going to be dead on what your blood glucose it, this is a part of the learning curve. Everyone needs to think of the cgms as a tool and not a replacement for finger pokes. We still do finger pokes to verify the cgms before eating or excerizing or any time that the number doesn't look right. In he begining you may just end up doing more finger pokes until you can figure out when to trust your cgms and when you need blood verification. You can not expect the cgms to correlate exactly with your meter at all times because it is not going to. Why? Because it is 15 minutes or so behind BUT by setting your alarms you will be able to prevent ALOT of lows and highs that just finger pokes would have missed until they had gotten severe. If you start the cgms and get frustrated do not give up! Find someone that is having success using it and pick thier brain for help. Try alternate locations. When we started we NEVER had a desent sensor until we started doing arm sites. The sites on the bottom were always getting bumped rubbed, and moved around. If you try the stomach and bottom with no luck start trying other areas. If you child complains about itching you need to try a different barrier. If the sensor doesn't stick you need to try a different adhesive/tape. My biggest piece of advice when it comes to this is if you are having questions find someone either in real life or on http://forums.childrenwithdiabetes.com in the cgms system and let them help you trouble shoot. Once you get it working for you , you will soon forget the hassles of the "learning curve".

Question:

I hear you cannot hear the alarms at night. We don't want to mess with fighting for the cgms if we can't hear it alarm at night when we need it most.

Answer:

Rumor has it that Minimed is testing a parental monitor but as we all know, that could be a long way off. Until then I have found the perfect solution. We use the radio shack wireless mic system. Best $50 I ever spent. Baby monitors do not work and usually just end up distracting what little sleep I was getting. The wireless mic fits right in the pump pouch and the ONLY thing you are going to hear is the alarms. With a good set of speakers you will NOT sleep through the alarms.

Question:

What about the school?

Answer:

You should modify your 504 to add the cgms. Remember, this is going to help keep your child safer at school. Make a chart of alarms and what you want done at each alarm. Stress to the person handling your child's care that the cgms does NOT replace finger pokes and a finger poke must always be used to verify an alarm. Also, make sure your settings on the cgms reflect what your childs blood sugar is going to do. For example if you ALWAYS have a post breakfast spike of 300 then set the high alarm to 320. You may want to keep your child below this but realistically if that is the spike you see then you want to preven unnecassary alarms while at school. On the weekends/holidays you can lower it and try to work on lowering the spike. If you know that your cgms is about 30 points behind on a RAPID drop then set your cgms at 90 at school to catch those hard drops before they become severe. It is alot of trial and error and the first few weeks that you use the cgms there will be alot of alarms that are not needed. Assure your at school caregiver that it will get easier and they will soon see the benefits of the cgms. Be available for questions the first month or so, the caregiver will need your assurance during this transition.

These are just a few of the questions that I was asked. If someone has a question that they would like answered (remember this is OUR experience) please feel free to leave a comment and I would be happy to share our experience. I wish I was as eloquent as Badshoe or some of the other bloggers out there so please bear with me :-P

The holidays are upon us!

2007-11-30T14:34:00.000-06:00

Wow, this time of year makes me smile and cringe at the same time. The kids love the decorations and activities. It has already gotten busy here but I wanted to (finally) update my blog a bit.

CGMS is going beautifully! We had to do a fasting basal test a few weeks back and that was a pita but with the cgms we were able to do it with alot less worry. I am still doing Hailey's sensor changes while she sleeps, not an ideal situation but it works for us. The last couple of sensors only lasted 12-13 days, not really sure what the problem was but the current sensor has the best isig so far so I am hoping it comes along well.

Glucophone! We have one and so far so good. Thanksgiving I did not get the texts until the evening but other than that they have been coming within seconds of testing. I did try to get the lab in the city to check it against her blood work but they refused without a Dr's order and said it was too late to get one :(

A1C, we had Hailey's done yesterday and I am confused. According to St. Lukes it is a 7.7 with a correlating mean bg of 170 but the last A1C Hailey had run at Children's was a mean bg of 183 and that A1C came back as a 7.3???? Makes no sense to me! I would call our Endo and ask BUT they are closed due to moving??? That really ticked me off since someone forgot to call in the order for the A1C. Luckily our pedi was willing to do this for us! I just am not able to take much time off and mil had already planned on being here. Yesterday was our last chance before Christmas and I didn't want to get into trouble for not getting it done.

We are off to a hockey game tonight! Hertko family weekend is Saturday and the game is part of the weekend. Ought to be interesting.....

ScottB's post on CWD

2007-11-16T23:38:00.001-06:00

I wanted to make sure I posted this on my blog. Scott really made me think about how I will react when the time comes (and we all know it will happen eventually). Here is his post:

Seizures can be fatal and just what factors are involved that dictate when it will be fatal is something I don't know. I'm about as close to an expert about seizures as you're going to find on this site short of a neurologist because I've had to deal with gran mal seizures since I was 20 and from what I've read on the subject, hypoglycemic induced seizures seem like a perfect example of the gran mal seizures I've had and just for the record, I've had a BUNCH of them and as you can tell, I'm still alive. I went from having 5 a week before proper medication was found (I don't have D) because typical epilepsy meds didn't do much, to presently maybe 5 a year. Not 100% under control but the meds needed to make it 100% would mean I'd be a walking zombie ...... I'd rather take the risk and be able to think clearly and be a functional human being instead of being full of meds that would put me in lala land for every waking minute.

I can't say whether my experiences with gran mal seizures is the same for all that have them but I can tell you this, THEY SUCK big time. When I am having a seizure, I may not clearly comprehend what's going on around me but I can hear and simply can't respond. This is important to remember because your calm composer may help. The whole ordeal is rather nightmarish for me because form 1 point of view, my brain is acting like a crashing computer hard drive and I've lost 99.9% control of my motor functions. I can't breathe or move under my own control and pretty much have to wait for the seizure to run it's course. In the mean time what wits I still have is fighting tooth and nail to get back in control. Some seizures are long, some are short but the longer the seizure, the more wiped out I am when it's over because not only could I not breathe while having a seizure, every muscle in my body was going nuts as well and I'll come out of a seizure with my body feeling like it just ran a marathon. So here are my tips should you have to go through this again.

#1- Being in your case your childs seizure is hypoglycemic induced, call 911 ASAP
#2- Do what ever you have to do to get his BG back up like a glugacon shot.
#3- While waiting for help to arrive, speak directly to your child but do it firm and calmly. He may not be able to fully comprehend what you're saying but if he can hear you, he will most likely comprehend the tone of your voice. His thoughts are probably already nightmarish so having someone around him who's coming unglued doesn't help him but if you are able to keep your wits about you and talk calmly to him can help your child pull himself back together.
#4- DON'T STICK YOUR FINGERS IN HIS MOUTH!! You may end up losing your finger and he may end up choking to death on the part of the finger you just lost. Unless of course he already has something in his mouth and you don't want him to choke on it either. Every neurologist I've talked to has said the myth about a person having a seizure choking on their tongue is garbage. The tongue may be doing flips in the mouth but that's not why the person having a seizure can't breathe properly. They can't breathe because their diaphragm muscle which controls their breathing is going nuts just like all the other muscles are.

I know the above probably isn't exactly what you wanted to hear but hopefully it will give you a better understanding and help you react properly if it ever happens again.

Thank you Scott for allowing me to post this here :-D

Hailey's walk article

2007-10-22T14:54:00.000-06:00

Published in Kingsley News Times (I really wish that they had an online edition)

WALKING FOR A CURE
Join Hailey¹s Hope Walk for Diabetes Oct. 7

INSERT PIC OF HAILEY
Hailey Moodie and her team, Hailey¹s Hope, will walk this Sunday in Sioux City for America¹s Step Out for Diabetes. Hailey displays the continuous glucose monitor on her upper arm, and insulin pump, in a case at her waist. Both devices are new advancements of improving the daily lives of a Type 1 diabetic. (Photo by Deb Kraft)

INSERT STEP OUT WALK LOGO.JPG

By Deb Kraft

Area residents, businesses and organizations are invited to join America¹s Step Out for Diabetes, a walk at the Sioux City riverfront and Anderson Dance Pavilion Sunday, Oct. 7 at 12:30 p.m. to raise funds for the American Diabetes Association, which works to prevent and cure type 1 and type 2 diabetes and improve the lives of both children and adults with diabetes. .
Kingsley-Pierson student, Hailey Moodie, daughter of Cliff and Nicole Moodie, will also host a team and the community is invited to help support Hailey¹s team, by joining to walk along and/or by offering financial support for ADA. There are collection containers at Pronto, Kingsley Pharmacy, Kingsley State Bank, Body Reflections in Moville, and the Moville Pharmacy.
³We are bittersweet about the walk,² stated Hailey¹s mom, Nicole. ³We are excited to be walking and yet it is only days before the one year mark (of her diagnosis) and we are very sad. None of us wants to have to deal with this disease.²
Eleven-year-old Hailey, since being deathly ill a year ago at the time of her diagnosis of Type 1 Diabetes, has experienced many changes over the last year. She now meets with a Pediatric Endocrinologist out of Omaha every three months.
³Over the summer, Hailey was started on the insulin pump and is also one of very few fortunate enough to be started on the continuous glucose monitor (CGMS),² stated Nicole. The pump feeds insulin to Hailey from multiple injections a day to one site, which is changed every 2-3 days. ³Her continuous glucose monitor has allowed her to reduce the number of finger pokes a day, and we are able to get a better picture of what is going on and prevent extreme low and high blood sugar levels.²
³The Continuos Glucose Monitor, or what Hailey calls the "tick", is a separate unit that is injected under her skin into the subcutaneous tissue that takes blood glucose readings every 5 minutes and sends those readings to a screen on the pump,² Hailey¹s mom explained. ³Since this technology is so new it has it's drawbacks and cannot tell the pump how much insulin to deliver, we still do that part. The CGMS is not always 100% accurate so Hailey must always do a blood test before dosing insulin and to verify low blood sugars. It is expensive and very few children have this technology right now. Almost every insurance company covers the pump but very few will cover the CGMS. The needle is about 1 inch long and is placed under her skin by either my husband or myself.²
That is one of Hailey¹s biggest challenges, having to endure the pain of frequent needle injections at various sites on her body.
³My mom and dad help me not to cry when I get the big needle, and do all they can to help me feel better,² said Hailey. ³It helps me to squeeze Mom¹s hand, while Dad puts the needle in. Mom and Dad continually watch over me through the night.²
That has been one harsh realization for the Moodie family. Type 1 Diabetes never sleeps. Hailey takes insulin throughout the day and night through the insulin pump, with her blood sugar levels being checked at midnight and 3:00 a.m.
³We are constantly adjusting her insulin levels,² said Nicole. ³Just a few things that affect blood sugar levels include food, exercise, sports, walking, stress, tests, homework, growth, hormones, weather, type of food, sleep or lack of, time of day, time of year, and the list could go on forever. Type 1 affects every aspect of life, and it is a challenge to keep blood sugar levels within her target range.²
Hailey checks her blood sugars by herself. Now, her pump monitor reads 156.
³That is good,² exclaims Hailey. ³Anything between 80 and 180 is good. If it¹s low, I have to eat something, and if it¹s high, I take extra insulin to bring it down.²
The sixth grader has to take life-saving measures in order to endure a day at school. In addition to the school backpack for books, she has the responsibility to carry another backpack filled with necessities.
³I take my travel scale to measure food and carbs, finger pricks, candy for fast-acting sugars, glucose tablets, glucose drinks, my meter and strips,² explained Hailey. ³I still do finger pricks at every meal.²
Unlike the most common Type 2 Diabetes, Hailey¹s Type 1 Diabetes does not have diet restrictions.
³Another challenge we have had is educating people that Type 1 Diabetes is not even close to the same thing as Type 2,² Nicole explained. ³Hailey did absolutely nothing to bring on her Type 1. It is an autoimmune disease where the body attacks the pancreas for some unknown reason. She needs to eat carbohydrates in order to grow and learn like any normal child. She is not restricted in her diet, and sugar free foods usually have more carbs than regular, often causing extreme stomach aches which cause her blood sugars to rise. Hailey is allowed to eat anything that I allowed her to eat before she was diagnosed, but now we have to put the insulin in her body that a child without Type 1 normally makes on their own.²
Hailey stays as active as possible, enjoying softball and swimming this summer, going on walks, and participating in soccer. She says her friends and classmates are also learning to better understand.
³Sometimes I forget to give insulin, just because I feel normal, like everyone else,² said Hailey. Hailey highly credits her close friend, Hanna Seggerman. ³She helps me when I am high or low, and helps me weigh my food.²
Those close friends become vital, especially during a school day, where Hailey changes classrooms and teachers approximately every 45 minutes with her Middle School schedule. Her care is also monitored by text messaging with her mom during the day.
³We really miss Mrs. Hagan (Hailey¹s fifth grade teacher). She kept in constant contact with me last year, and that was so comforting to me,² shared Nicole. ³Our Middle School faculty have been very attentive and supportive, too. They all attended a training about Hailey¹s diabetes. We really appreciate their concern for her.²
Other means of support to the Moodie family has come from the Siouxland Area Children With Diabetes, a group co-founded by Nicole.
³We have around 6 families in the area that meet now, and have created a website (http://sacwd.org). It¹s so good to meet with people who understand exactly what you¹re dealing with, and the kids can check their blood sugars without being stared at,² said Nicole. ³Hailey is a part of the Siouxland CWD walking team, and also has her sub-team, Hailey¹s Hope. If anyone would like to walk with us they can contact me and I can get them set up.²
As a parent, Nicole stresses why this walk is so important, and hopes to bring a greater awareness to this devastating disease.
³No child should have to endure what these kids have to in order to stay alive. It is painful, it is always present. There is never ever a break from Type 1 diabetes, every single thing that Hailey does must be planned out carefully, the spontaneity of just being a kid is gone. It is forever, there is no cure! She will have to take insulin and check her blood sugars for the rest of her life. Diet will not cure her, exercise will not make it go away. She will not outgrow it nor will she ever be able to forget about it. It must be factored into every single thing she ever does. It is always there, 24 hours a day, 7 days a week, 365 days a year. She did nothing to bring on this disease and yet it invades every moment of every day. We need a cure for these children. We are walking for a cure, we are walking for advocacy for our children, and we are walking for the 35 children diagnosed every day to fight for a cure for them, also.²
For more information as to how you can help, check out: http://sacwd.org
Hailey's walk page: http://main.diabetes.org/site/TR?...nal&fr_id=4664&px=3849718
Hailey's Video: http://www.youtube.com/watch?v=b1tiIcHfeMc

Tommorow is the 1 year diagnosis day

2007-10-12T11:56:00.000-06:00

but today feels like "the day". My morning started the exact same as it did last year. Same kids, just a year older, same drop off times, same routine, the only thing missing was a very sick little girl. I had a moment, before I went in to get H up, that I did not want to go in. I had a flashback of that moment, Friday October 13th, 2006, walking into my daughters room and seeing her, having her scream, looking at her gray skin and sunken body. She looked dead. Little did I know at the time how close to death she was.

Wow, look at how far we have come in a year! And yet, I feel as if something is missing inside of me. I am sad but not crying. I am angry but not blowing up. I guess I feel numb? Whatever it is, it doesn't feel "right".

I am going to take Jamie's suggestion and have H pick out some toys and books to take to St Luckes tommorow. I also want to pick up a bag of candy for the nurse's that we so wonderful to her last year. Afterward we will go to KFC just because we never go there.

I don't know, I just feel strange. Maybe tommorow I will cry or be truly angry and let some of this "feeling"go.

At diagnosis alot of people told me that it was going to get easier. At the time, I needed to hear this. The honest to God truth is, it does not get easier, it just gets to be more a part of our lives. We make it fit and we work around it but it is ALWAYS there.

So sad

2007-09-28T07:31:00.000-06:00

I am so sad and upset and heartbroken today. Kids are so mean. My daughter is sweet and loving and did nothing to them and yet they have to be so cruel. I would do anything to take this away from her. I know that she is just as capable of hurting someone else's feelings. I make sure everytime I see something unfair or cruel happen that we talk about empathy. We talk about empathy on a regular basis. Empathy for those less fortunate. Empathy for kids that are left out. Where is the empathy in the world for her? I will say that a mom I spoke to this morning came over this afternoon and SHE has empathy! She gets empathy! She brought a gift for Hailey and left a note inside. When I read the note I started crying again. Why can't there be more people in the world like her? I think that is what is wrong with the world today, not many people remember what empathy TRULY is.

Our sensor routine

2007-09-21T09:20:00.000-06:00

We always make sure the sensor is VERY secure. Our routine is:
*Alcohol wipe, let it dry
*Remove covers from sensor tape first, if we do it after we insert it tends to slow down the inserter
*Insert, remove needle, press and hold for a few minutes.
*IV Prep wipe for skin protection, let it dry
*Skin Prep wipe for extra stickyness, let it dry
*2 pieces of Opsite Flexifix, 1st piece over the top half 2nd over the bottom overlapping the top
*Skin Prep over the opsite to make sure to get the edges stuck

For the 3 day restart just wait until it says sensor end then hit start new sensor. I have found that if the sensor is going to end at a bad time (1 hour after lunch) I will hit sensor end sooner and restart a new sensor.

On day 6 some people will go ahead and disconnect charge, etc... I just start new sensor and wait until day 7 when I will start to get week signals constantly.

On day 7
*Get week signal alarm
* CAREFULLY remove old tape, keeping a finger pressed pretty hard on the white portion I peel from the top to the bottom. Once I have it all of the actual sensor I will disconnect and finish peeling the rest off
*at this point I make Hailey lay down and watch a movie and stress to her how important it is for her not to move AT ALL
*charge the minilink
*repeat all steps of wipes and taping listed above
*start new sensor

As I have said before, this only works for her arms sites. We had TERRIBLE luck with putting her sites anywhere else. Where are you placing the sites? Is there alot of "wear and tear" on that area? Is there somewhere else that might get less disturbed?

Hmmm ok?? Found on LOL diabetes blog

2007-09-17T13:24:00.000-06:00

My alarm clock is retired

2007-09-09T15:27:00.000-06:00

Night 2 with the wireless mic system and I am officially turning off my 3 am alarms!! I heard the pump every time it alarmed last night :-D I am one happy momma today!

For those still trying to hear the alarms at night

2007-09-08T21:51:00.000-06:00

I think I finally found something that actually works. Dh and I went
to Radio Shack last night and I finally asked the guy that works there
for help. I told him our situation and what exactly I was looking for.
Would you believe he spent an hour and a half helping us and we
finally found something that works I really love this man!!!! He
hooked us up with one of those wireless microphone systems that you
see people use at conferences and some churchs. I was really sceptical
at first figuring I would still hear all of the static and movement
but not the alarms like we have been fighting the last few months. So
I payed the super nice man $56 and headed home to see if it would
work. We plugged the reciever into some old computer speaker we had
lying around, dropped the mic into Hailey's pump pouch, and hooked the
little box to her belt. 2 hours later I am sitting in the living room
(reading CWD of coarse ) and I HEAR THE ALARM BEEP! I mean all the way
from her room to the speaker in my room to the living room!!! So I run
to her room and SHE WAS LAYING ON THE POUCH and I could still hear
it!!!! It was a weak signal because she had the pump under her and her
arm up over her head. I moved her around a little bit and left her to
sleep. I was nervous that maybe the battery would go dead overnight so
I left my alarms on and it was still chuggin along at 3 am and at 4 am
I was awoken from a dead sleep by her pump alarm! Meter BG 1 hour!!!
Dang, I forgot to do it at 3 It was so wonderful not to hear all of
the static from the baby monitor last night and the only thing I could
hear out of the speaker was soft breathing and pump alarms. I know
there are alot of us trying to find ways to hear the alarms so I
really wanted to share our small victory in the "volume battle".

Vampire mom...

2007-08-29T23:19:00.000-06:00

She sneaks up on you in the middle of the night. While everyone else in the world is sleeping. In the dark, quiet as can be. Don't complain of a stomach ache or drink too much water or you may be next! Muwahahaha. Don't worry though, she only takes a drop and then she is sneaking off waiting for another time to satisfy her need.

I AM VAMPIRE MOM!

We are walking

2007-08-29T13:51:00.000-06:00

It is our goal to raise $359.00. That is only $1 for every day that Hailey has lived with Type 1 diabetes since her diagnosis.

Hailey's page

I am bummed that it is the same week of the 1 yr dx anniversary for Hailey but I am sure that will keep us busy and maybe we will forget about it :-D

Glucophone

2007-08-24T23:07:00.000-06:00

:: HealthPia America ::

We have to have one of these! How wonderful would it be to have one less device for my daughter to carry around AND it will send me her bg every time she tests! Once they start working with insurance companies I hope to be right there in line to get one. Right now she texts me with every bg reading at school and I text her back with instructions. Wouldn't it be nice for her to only have to worry about it if I text her and tell her she needs to do something! Now if only some day soon they could just make one device that would control all of the junk our poor kids have to lug around. Imagine a pump that works as a cell phone, bg meter, cgms, and room for a couple of glucose tabs or an Airhead. Ok while I dream lets make it the size of my husbands wallet ROFLMAO.

My H put this together Fixed Video

2007-08-19T00:41:00.002-06:00

Not fair

2007-08-16T20:38:00.000-06:00

Isn't it bad enough that all of us have to deal with the diagnosis of type 1 but then it is a few months later and the financial burden because painfully apparant. I had never imagined how much money it costs to treat a life long disease :-( I won't go into the details but I had to leave a wonderful group of women and will be closing my online business in the next month and my heart is breaking.

Didn't go so well

2007-08-15T14:37:00.000-06:00

Well, it seems that H and I need to work on our texting skills. We worked it out through the school that H could text me her numbers and instructions anytime anywhere instead of having to leave the classroom to find a phone. Unfortunatly H did not understand that sending me just yes no and a number wasn't helping me. For lunch she had to take her scale to school and she texted me 98 carb 40, I texted her back asking if that was her total carbs or just the fries, she texted me back yes so I assumed it was the total carbs. Wellll, guess what? That was just for the fries. So I guess she sat in the lunch room during her whole lunch time waiting for me to text her back and when lunch was over she just ate the fries and bolused for that :-O. She ended up missing out on the after lunch free time just so she could eat those. I asked her why she didn't just call when she didn't hear back from me and she said she thought she was only allowed to text :-( Anyway we had a long talk about how texting works and that she needs to type more than her number and yes and no. We are going to practice tonight after the kids go home. I really hope the Head lunch lady gets her act together soon so we can get lunch carbs set the night before and just worry about the numbers!

Back to school already!

2007-08-15T10:48:00.000-06:00

Wow, this day has just come way to soon! Our 504 is being reviewed and the cook is still working on carb counts but other than that I think everything else is finished.

A video just for our kids!

2007-08-15T10:00:00.000-06:00

H is also in this one. How ironic that I saw this one today an hour after sending her back to school. This year was so much harder than any year before. I am so afraid for her. 6 teachers are alot of teachers. I am confident that they care about her but it scares me to put her in the hands of people that don't "live" this and get it.

My H is in this one!

2007-08-13T13:58:00.001-06:00

The Fair

2007-08-03T09:50:00.000-06:00

I am so proud of H! She is in 4-H and showed her sheep at the fair last week and won the division Champion trophy! She was so excited and has shown her trophy to everyone we know LOL. Now lets hope she doesn't expect one every year :-O

Oh and of coarse M got a face painting thanks to Grandma LOL

2007-07-28T23:00:00.000-06:00

This touched my heart today.

2007-07-26T19:50:00.000-06:00

I asked God.....

I asked God to take away my pain. God said, No. It is not for me to take away, but for you to give it up.

I asked God to make my handicapped child whole. God said, No. Her spirit was whole, her body was only temporary.

I asked God to grant me patience. God said, No. Patience is a byproduct of tribulations, it isn't granted, it is earned.

I asked God to give me happiness. God said, No. I give you blessings, Happiness is up to you.

I asked God to spare me pain. God said, No. Suffering draws you apart from worldly cares and brings you closer to me.

I asked God to make my spirit grow. God said, No. You must grow on your own, but I will prune you to make you fruitful.

I asked for all things that I might enjoy life. God said, No. I will give you life so that you may enjoy all things.

I asked God to help me LOVE others, as much as he loves me. God said... Ahhhh, finally you have the idea.

Feeling an inch high today

2007-07-20T08:57:00.000-06:00

Ugh, I yelled at H last night :-( I lost it and now I feel terrible. Lately she has been running away from site changes and last night we were in a hurry since it was 9 pm when I started the site change and I didn't want to go any later and have her go too low overnight. I HATE THIS DISEASE! I know she does too. We finally got the site changed at 10 pm after dh held her down and I stuck it in, mind you she will be 11 in 2 weeks and is very strong. At 5 to 10 we decided the screaming had just gone on too long and we needed to get this done. At that point she had herself so psyced out that it was the only way. Please someone tell me this is a phase and she will stop soon, I can't keep doing this every 3 days. Thank goodness we can get the CGMS to go at least 14 days or I think I would lose it. We offered her the choice to go back to shots and she got even more upset. I just don't know what to do. Anyone know of a good cheap bribe to get an 11 year old to hold still for site changes? I know it is because we had a bad site a couple of weeks ago that spurted blood when we pulled it 24 hours after putting it in but how do I convince her now that it won't happen again when it could?

On a happier note though her cgms was within 5 points all day yesterday and through the night last night. I am so glad we decided to try the arm sites! Things have worked so much better and the sites are lasting so much longer! There was a post on the cgms yahoo group and CWD website about possible nerve damage from arm sites so I called H's Endo who said the risk is the same no matter what part of the body we use and as long as we don't use the forearm the nerves are deep enough that we would have to put the needle straight in to hit a nerve that would cause long term damage. Just for my own peace of mind I looked up some pics on the net of where the nerves are located and I feel confident that we are safe using the arm. I know H likes it there so much better than anywhere else.

I hope everyone is having a wonderful summer with great numbers :-D

Finally an update

2007-07-13T14:10:00.000-06:00

Wow, it has been a while. Our last sensor made it 21 days!!! We probably could have gone longer but I felt that was just pushing things too far. I changed the sensor the day before my surgery and decided to change a new one out the weekend after the 4th of July. If we are able to keep sensor close to that long every time we should not run out of space on H's arms for new sensors! We had wonderful accuracy and I was very pleased with this last sensor.

H's softball team also won thier league championships! It was so great, the girls had lost all of the games up until the last 4 and then they came back and spanked the other teams! The other teams were so certain they would beat us that every time we beat one everyone would start crying. I did feel a little sorry for them but they should never underestimate the underdogs! Hailey played 2nd base for almost every game and centerfield for the ones she wasn't on 2nd. She played wonderfully and only had to sit out 4 innings all season because of lows.

The cgms was wonderful, we always knew where she was going and if she needed to start "carbing up". We had our pump start after the sensor start and I am so glad we did it that way. We were able to set basals and boluses quickly without any majors lows or highs.

If anyone has any questions please ask, I love to try to help anyone I can.

Pictures as promised

2007-07-13T10:43:00.000-06:00

Here are pics of Hailey's most recent site and one of the old site that lasted 21 days. You can see the tan line in the picture and it has healed nicely. Please do not copy these pictures but feel free to link to them. I hope to add a post about what has been going on later today.

Photo of arm site

2007-05-17T14:34:00.000-06:00

Here is the picture that I promised! H was not being very cooperative LOL

Arm site!

2007-05-16T13:33:00.000-06:00

We are now on an arm site and H really likes it! We were having trouble finding spots that would not be in the way while playing softball and decided to give the arm a go, I am so glad we did! We are getting good results and H is not babying it as much as she did the other sites :D

Looking back it has been a while since I have updated our progress, I better do that :-P Things have been really good with the CGMS! I am back to setting an alarm for 3 am and 5:30 am, I just cannot hear that stinking alarm!!!! It is really driving me crazy. I bought an expensive video/audio baby monitor off of ebay and that has helped a little but seriously, I really wish Minimed would come up with a parental until that is as loud as a smoke detector! That way you can keep it on at night and know that you will get up. I hope the next generation comes out with something louder. We are getting 6 days out of each sensor, we pushed one to 9 days and ended up with some irritation around the sensor insertion so we decided to change at the 6 day mark. We have to disconnect and restart on that day anyway so might as well just do it then. We have been getting very accurate results with the system! I was a bit nervous hearing everyone talk about watching trends and not numbers but fortunatly for us we have been able to watch both. I have been having some issues with H lieing to me about finger pokes :( She calls me daily for her lunch carbs and dosage and I ask her bg. I guess the last week or so she has not been doing a finger poke, just telling me the number on the cgms. We had a long talk about how it can be innacurate and we must double check with a finger poke when it comes to treating. So far according to her meter she is back to checking her bg and not lieing anymore.

I will try to post a picture of the arm site soon!

Phew what a night!

2007-04-27T09:59:00.000-06:00

Cgms did great, this was due to user error :o Hailey had softball last night and the cgms caught a low perfectly! So we had to give some carbs again before bed but she only went up to the 120's so I knew that the alarm would go off within a couple of hours. Fast forward to 3 am and I hear the alarm, I go into her room thinking it just started to go off and to my shock and dismay it had been alarming since 2 am >:( I can't believe I didn't hear the stinking thing! Her cgms said she was 89 and finger poke said 66. Treated with 23 carbs just to make sure that she will stay up this time. :( Fortunatly according to the cgms is was a REALLY slow drop otherwise she could have been in big trouble! How could I have not heard the alarm????? I have the monitor right next to the cgms! So then of coarse I feel terribly guilty and decide to move the cgms closer to the head of the bed and turn the monitor up, stupid stupid stupid! Hailey wiggled around and ended up covering it with her pillow :( I woke at 5 am to check her and of coarse "Lost Sensor" Ugh, found the sensor again clipped the cgms to her pj bottoms and started my day with a strong cup of cappucinno (I am a wimp) and a smidgen of guilt. Ugh there has to be a way to make this thing louder!!!!

This is amazing!

2007-04-26T22:40:00.000-06:00

I just cannot say enough about the minilink! The words are not coming to me. I am sitting here crying right now. Not sad tears and yet not happy either. We were able to prevent a low tonight during softball practice, it was just such a relief to not have to force H to test her bg every 15 minutes to make sure she was not going low. She was just about up for her turn to batting practice when the alarm began. Cgms said 98 finger stick said 79 so she was dropping pretty fast. Treated the low with Gatorade and 2 glucose tabs and she was off for her turn to bat. No need to retest as the cgms showed that she was trending back up within 10 minutes. The other part of me is so sad that she even has to do this. I sat watching the other girls practice and they are normal, no hovering mom, no medical device strapped to their waste, no "low bag" sitting on the bench, and most of all no worries. I am so grateful for the technology we have available for Hailey and am completely aware had she been born 75-100 years ago she would have died. It doesn't make the pain and loss of her childhood any less. So tonight part of me is thankful for the technology and the other part of me is angry that we need it. I thought that I had gotten over the anger at this disease but unfortunately I think it is just a cycle that has run full circle again. I read a post somewhere about a study comparing the dx of a child with Post Traumatic Stress disorder and have to agree that those are the feelings I have. BUT I am grateful!!! Every single person with Type 1 should have this device NOW! It should just be mandatory that at dx a child leaves the hospital with the cgms and a pump if they want one. I want H to help other children see the benefits to her! She has done HALF of the finger pokes she normally does and would have been less but the first day we had some calibration problems and the 2nd 24 hours I had trouble trusting the trends. Today I am more confident in the cgms! I feel wonderful knowing that lows will not go undetected! Even when calibration is off she will not go low enough to have a seizure before her cgms will alarm. So what am I still doing away at 12:15 at night? Habit I suppose?

Easter weekend

2007-04-22T20:35:00.000-06:00

Just a few pics of the weekend with my girls and thier cousins.

Update on CGMS

2007-04-22T12:43:00.000-06:00

I knew that I should not have gotten my hopes up. The DE at the hospital decided that "it won't work", she wouldn't give me any other reason. Of coarse I had told H that she would be doing it so she broke down in tears :( I hadn't been giving her any dates at all to prevent this but since Omaha said that she would do it I felt safe to tell her. So of coarse after we left I put a "not so nice" phone call into Omaha in the heat of the moment. Of coarse no one called me back until I left 3 more messages the next day. Omaha has agreed to allow my hubby to take H to them to start the CGMS without me. The nurse I spoke with stated "we feel through our phone and email conversations that you are ready to use this device but since we have not ever started one we want to have H here to do the first insertion and since your husband is able to bring her we will allow that" Honestly if I wanted to I could insert it today and feel confident that I know more about this device than our Endo's office. Soooo as of Friday H has to be in Omaha Tuesday morning for the start up and we will be up and running! I will update if things change again. I hope everyone is having a wonderful weekend.

Posted on CWD message board

2007-04-22T12:41:00.000-06:00

Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can, see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Winning some battles!

2007-04-19T12:15:00.000-06:00

I can't believe I forgot to post on here!!! We recieved our Minilink Saturday April 14th and it has been sitting on my counter ever since :( We have been battling with the Endo as they have wanted us to wait until pump start at the end of May. Well, today I won the battle, yippeeeeee! They are going to allow a local CDE to work with minimed and get our cgms up and running BEFORE softball starts May 1st. I can't wait to tell H, she is going to be soooooo excited. We are going to see Grace today to get the blind cgms put in that Omaha requires and hopefully she will know when we can hook up our minilink. Of coarse I shouldn't get my hopes up, as I have learned these people tend to back out at the last minute :( Let's hope this time will be an exception :D

6 Months

2007-04-13T09:32:00.000-06:00

Today it has offically been 6 months since H was diagnosed with type 1 diabetes. I have been very emotional. At this very moment I was in a panic trying to get all of the childcare kids picked up so I could get to the hospital, we had no idea what was wrong with H until a few hours from now. All I knew was that she was VERY sick and that I needed to get to the hospital RIGHT NOW because they were talking about life flighting her to Children's in Omaha. Has it gotten easier since the begining? No, sadly it has only gotten harder the more I learn about the disease. Knowledge is power but it can also be a burden. I love H and would not change her for the world but I would take D away in a heartbeat if I could. I wonder what unlucky things could happen on this Friday the 13th.....

Sitll waiting

2007-04-09T13:30:00.000-06:00

We are still waiting on our CGMS :( I have been getting terribly ansy on this! The insurance and minimed are still working out payment terms and this is driving me crazy. I called again today and Bob thought we should get the last letter from the insurance tommorow and hopefully be able to have our monitor shipped out the same day! We will see I guess. Once we get it we have to wait for our rep to have time to help us get going so it could be another week before we are real timing.

I also found out a friend of our's dd will be pumping in the next couple of weeks. I am happy for them but jealous for us. We have been trying to get pumping since January and we won't even get the class until the 21st of May :( and probably won't be pumping for quite a while after that, softball season will probably be over by the time we are pumping :(

Ok, enough whining for one day.

Study posted by Jamie at CWD forums

2007-03-21T13:51:00.000-06:00

Abstract
Little is known about the experiences of mothers raising young children with type 1 diabetes. The purpose of this study was to describe the day-to-day experiences of mothers (N = 28) raising young children under 4 years of age with type 1 diabetes. Descriptive, naturalistic inquiry principles were used to interview subjects, as well as to manage and analyze the data. The mothers reported using the management behavior of constant vigilance. Their concerns about hypoglycemia and providing competent care reflected the interplay between their fears and profound sense of responsibility for managing the disease. Mothers reported having to learn the management behaviors and to occasionally adjust the day-to-day management when either severe hypoglycemia or developmental milestones occurred. Although mothers initially had feelings of incompetence with the care they provided, with time, they became very skilled. There were also reports of limited access to babysitting, child care, or respite services. The intensity of their constant vigilance associated with their concerns, responsibility, and lack of supports resulted in some mothers having physical and/or emotional problems. The findings of the study highlight the importance of identifying family and/or community resources that may provide mothers with support that could reduce some of the tremendous stress and burden of responsibility experienced after diagnosis of diabetes. Copyright 2003, Elsevier Science (USA). All rights reserved.

We insurance approval for the CGMS

2007-03-16T21:54:00.000-06:00

To say that I am excited is the understatement of the century!!! We will be using the minimed paradigm with the minilink continuous glucose monitor!! Wooohoooo yippeeee harraaaaayyyyy :D I will make sure we post our progress as we get the system and get hooked up. I expected a much longer and louder fight than it was. The first phone call I was told we were denied due to the cgms being "experimental". I informed the insurance rep that it was FDA approved for Children on Monday March 12th so therefore it wasn't considered experimental anymore and she told me if you can prove it they will review the decision. Then she made a big mistake LOL she gave me her email address and told me to send the pertinent FDA information to her. From that moment on I spent hours finding links and information about the FDA approval and the benefits to H and to the insurance company. I had to have sent at least 50 links. I wish I had kept those emails! I sent them in clusters of 3 or 4 so I am sure she quit opening them after a short time! We knew that no matter what we would be getting this for H and had planned on selling our camper and putting a 2nd mortgage on the house if we had to. This eases the financial worry sooooo much. I am on cloud 9 tonight! Thank you God for answering our fervent prayers :D Once we get it I will make sure to post all about our experiences with it!

I found this on you tube tonight

2007-03-10T00:29:00.000-06:00

To say that I am psyched is the understatement of the century!!!

2007-03-09T11:16:00.000-06:00

The new sensor has been approved and will be out Monday March 12th! I just talked to our rep this morning and he is giving it a huge double thumbs up :D

The big storm

2007-03-04T19:55:00.000-06:00

We are all dug and and fortunatly no one lost power! We were nervous for a while when the wind picked up but once hubby started diggin us out everything looked much better. The pictures do not do the storm justice! These are all after plowing so it does not look nearly as bad as it was.

These are 8 foot fences and the snow is almost to the top on the outside also

Photo Sharing - Upload Video - Video Sharing - Share Photos
Front yard

Photo Sharing - Upload Video - Video Sharing - Share Photos

Photo Sharing - Upload Video - Video Sharing - Share Photos

This is why I get up 3 times a night to check H's BS just for those that still don't understand.

2007-02-28T12:13:00.000-06:00

efective Awakening Response to Nocturnal Hypoglycemia in Patients with Type 1 Diabetes Mellitus

Bernd Schultes1*, Kamila Jauch-Chara1, Steffen Gais2, Manfred Hallschmid2, Eva Reiprich1, Werner Kern1, Kerstin M. Oltmanns3, Achim Peters1, Horst L. Fehm1, Jan Born2

1 Department of Internal Medicine, University of Luebeck, Luebeck, Germany, 2 Department of Neuroendocrinology, University of Luebeck, Luebeck, Germany, 3 Department of Psychiatry and Psychotherapy, University of Luebeck, Luebeck, Germany

Background

Nocturnal hypoglycemia frequently occurs in patients with type 1 diabetes mellitus (T1DM). It can be fatal and is believed to promote the development of the hypoglycemia-unawareness syndrome. Whether hypoglycemia normally provokes awakening from sleep in individuals who do not have diabetes, and whether this awakening response is impaired in T1DM patients, is unknown.

Methods and Findings

We tested two groups of 16 T1DM patients and 16 healthy control participants, respectively, with comparable distributions of gender, age, and body mass index. In one night, a linear fall in plasma glucose to nadir levels of 2.2 mmol/l was induced by infusing insulin over a 1-h period starting as soon as polysomnographic recordings indicated that stage 2 sleep had been reached. In another night (control), euglycemia was maintained.

Only one of the 16 T1DM patients, as compared to ten healthy control participants, awakened upon hypoglycemia (p = 0.001). In the control nights, none of the study participants in either of the two groups awakened during the corresponding time. Awakening during hypoglycemia was associated with increased hormonal counterregulation. In all the study participants (from both groups) who woke up, and in five of the study participants who did not awaken (three T1DM patients and two healthy control participants), plasma epinephrine concentration increased with hypoglycemia by at least 100% (p < 0.001). A temporal pattern was revealed such that increases in epinephrine in all participants who awakened started always before polysomnographic signs of wakefulness (mean ± standard error of the mean: 7.5 ± 1.6 min).

Conclusions

A fall in plasma glucose to 2.2 mmol/l provokes an awakening response in most healthy control participants, but this response is impaired in T1DM patients. The counterregulatory increase in plasma epinephrine that we observed to precede awakening suggests that awakening forms part of a central nervous system response launched in parallel with hormonal counterregulation. Failure to awaken increases the risk for T1DM patients to suffer prolonged and potentially fatal hypoglycemia.

Funding: The study was funded by a grant from the Deutsche Forschungsgemeinschaft (SFB 654: Plasticity and Sleep). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing Interests: The authors have declared that no competing interests exist.

Academic Editor: Leif C. Groop, Lund University Hospital, Sweden

Citation: Schultes B, Jauch-Chara K, Gais S, Hallschmid M, Reiprich E, et al. (2007) Defective Awakening Response to Nocturnal Hypoglycemia in Patients with Type 1 Diabetes Mellitus. PLoS Med 4(2): e69 doi:10.1371/journal.pmed.0040069

Received: June 6, 2006; Accepted: January 4, 2007; Published: February 27, 2007

Copyright: © 2007 Schultes et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Abbreviations: ANOVA, analysis of variance; CV, coefficient of variation; REM, rapid eye movement; T1DM, type 1 diabetes mellitus

* To whom correspondence should be addressed. E-mail: schultes@kfg.uni-luebeck.de
Editors' Summary
Background.

Hypoglycemia (low blood sugar) is a frequent complication of insulin-treated diabetes, affecting patients with type 1 diabetes mellitus in particular. In individuals who do not have diabetes, insulin secretion is modified naturally and continuously by the body's own regulatory systems, depending on the blood sugar. However, in diabetes patients there is a lack of natural insulin and so manufactured insulin has to be given by injection after blood sugar testing. Hence, it is not possible for patients with diabetes to modify insulin secretion naturally in response to a change in glucose levels, and so blood glucose levels can rise and fall beyond healthy levels. In individuals who have intensive insulin therapy, hypoglycemia can be a particular problem; each year about 25% of patients on intensive insulin therapy have at least one episode of severe hypoglycemia—which requires the assistance of another person.

When hypoglycemia occurs during the day, diabetes patients can recognize it by a variety of symptoms, e.g., feeling sweaty and lightheaded, and they may either seek help from another person or treat themselves with sugar. Hypoglycemia during sleep may be very common—it has been observed to occur in up to half of the nights when patients with diabetes were monitored. The particular problem with hypoglycemia occurring during sleep is that diabetes patients may not be aware of it and hence may not be able to treat themselves or to seek assistance. It is believed to contribute to some instances of sudden death during sleep in patients with diabetes.
Why Was This Study Done?

It has not been clear whether there is a certain level of blood glucose below which a signal is triggered that provokes awakening from sleep in either diabetes patients or in individuals who do not have diabetes. The authors of this study wanted to compare responses to lowered blood glucose in diabetes patients and in individuals who do not have diabetes and to see whether the responses differed. They also wanted to look at whether there were any other hormonal changes that preceded or followed awakening after hypoglycemia.
What Did the Researchers Do and Find?

They treated two groups; 16 type 1 diabetes mellitus patients and 16 healthy control participants. With careful monitoring, on one night once stage 2 sleep (as measured by a method known as polysomnography) had been reached, they gave insulin to lower the blood glucose to a specific level (2.2 mmol/l), which would when awake give symptoms of hypoglycemia. On another night (the control night) normal blood sugar levels were maintained.

They found that only one of the 16 diabetes patients, as compared to ten healthy control participants, woke when hypoglycemia occurred. In the control nights, none of the study participants in either of the two groups awakened during the corresponding time. Awakening during hypoglycemia was associated with substantial hormonal changes, especially with an increase in one hormone, epinephrine (also known as adrenaline), and the increases in this hormone occurred before polysomnographic signs of wakefulness.
What Do These Findings Mean?

It appears that patients with type 1 diabetes mellitus do not awake at a level of hypoglycemia that triggers waking in normal individuals. The hormonal responses that were seen in individuals who awoke may be part of a crucial response system to hypoglycemia. These results help us to understand how diabetes patients respond to hypoglycemia, but further work will need to be done to determine whether it is possible to improve the response. It should be noted, however, that the results are probably not generalizable to patients with type 2 diabetes mellitus, who represent the majority of patients with diabetes.

Been a while

2007-02-26T14:49:00.000-06:00

It has been a while since I have posted anything *blush* I am getting lazy about it lol. Lets see whats new with us..... H's dosages are now B:5 L:9 D:12 S:15 and 14 units of Lantus at 6 pm. We upped the Lantus last night as we are seeing overall higher numbers, hopefully this will help that out.

Our little group is growing! We now have 4 families that will be meeting in March. I am so happy that we have been able to connect and offer each other support! I was contacted today by another mom who lives about 1 1/2 hours from S.C. and am hoping that she will join us.

Pump ugh :( Sounds like we won't even be able to pump until after May :( We cannot even get into the stupid pump class until the end of May and they are saying that we will not be pumping until after we take thier pita class. If it weren't for the fact that Omaha is going to prescribe the cgms we would have gone to Sioux Falls already. Ugh so dang frustrating! I cannot even put into words how frustrated I am about the entire situation.

All in all we are about the same. Things are settling into a routine finally and H has been pretty happy lately. I hope it stays this way for a little while!

What I do to keep myself from going crazy

2007-02-19T21:41:00.000-06:00

A pair of pants I am working on for a customer. The monotony of knitting and crochet have become a soothing pattern to my soul. These are Tunisian Crochet wool longies made of "100% pure wool" wool. I hope to finish them tommorow barring there are no more lows or extreme highs tonight ;)

From Lanae: Little Things

2007-02-12T15:42:00.000-06:00

As you might already know, the head of a company survived
9/11 because his son started kindergarten.

Another fellow was alive because it was his turn to bring donuts.

One woman was late because her alarm clock didn't go off in time.

One was late because of being stuck on the NJ Turnpike
because of an auto accident.

One of them missed his bus.

One spilled food on her clothes and had to take
& nbsp; time to change.

One's car wouldn't start.

One went back to answer the telephone.

One had a child that dawdled and didn't get ready as

soon as he should have.

One couldn't get a taxi.

One put on a new pair of shoes that morning,
took the various means to get to work, but before

he got there, he developed a blister on his foot. He

stopped at a drugstore to buy a Band-Aid. That is

why he is alive today.

Now when I am stuck in traffic, miss an elevator, turn

back to answer a ringing telephone ...
all the little things that annoy me. I will think to myself,
this is exactly where God wants me to be at this very

moment..

Next time your morning seems to be going wrong;
the children are slow getting dressed,

you can't seem to find the car keys,

you hit every traffic light, don't get mad or frustrated;

God is at work watching over you.
May God continue to bless you
with all those annoying little things
and may you remember their possible purpose.

Pass this on to someone else, if you'd like. There is

NO LUCK attached. If you delete this, it's okay:

God's Love Is Not Dependent On E-Mail!!! (that's the cool part)

We are getting the pump AND a CGMS!!

2007-02-07T10:45:00.000-06:00

Woohoo, yippeeee hurrraaaayyy! The Endo did a complete 180 on her position! I don't know why and I really don't care why :P She has agreed to let us start the pump process AND has agreed to write a script for the continuous glucose monitor OFF LABEL. I am so excited! I think we are going to go with the minimed pardigm system. I would love to wait for the navigator to come out but they have been "coming out next month" now for way over 6 months. Any advice anyone has? I am so excited, I need to go start calling places. I did call my insurance yesterday to ask about the CGMS and she said as long as I have a letter of medical necesity our insurance WILL cover it :O So much to do :D

From the Children With Diabetes message board.

2007-02-07T10:39:00.000-06:00

a O2 negotiating $1b deal with Boston Scientific
Beta-O2 Technologies is developing a proprietary implantable artificial pancreas for diabetics.
Gali Weinreb and Golan Fridenfield 6 Feb 07 14:47
Artificial pancreas start-up Beta-O2 Technologies Ltd. is in advanced negotiations with Boston Scientific Inc. (NYSE: BSX) to give the latter the option of acquiring Beta-O2 in stages. Under the proposed agreement, Boston Scientific will initially acquire 10% of Beta-O2 for $4 million, and will later buy additional stakes subject to progress in product development and regulatory approval.

At the end of the process, Boston Scientific can acquire full control of Beta-O2. The final amount, including royalties, could exceed $1 billion.

Beta-O2 is developing a proprietary implantable artificial pancreas, called the B02 TM. The device is designed for the treatment of Type 1 diabetes, and a subgroup of Type 2 diabetes. Type 1 diabetes patients are insulin dependent. The artificial pancreas uses the active ingredient, a group of beta cells that are found in the pancreas, which monitor blood glucose levels and secrete insulin accordingly.

The B02 TM is a small device, implanted subcutaneously in a 15-minute minimally invasive outpatient procedure performed under local anesthesia. It contains islets of Langerhans (insulin-producing cells), which are continuously oxygenated and nourished through Beta-02 proprietary technology. Beta-O2 believes that it can bring its artificial pancreas to market by 2011, assuming all goes well.

Diabetes results when these beta cells fail to function properly. Until now, the only way of obtaining beta cells is from deceased donors and implanting them into the patient. The biggest problem with this procedure is that the cells die from lack of oxygen.

Beta-O2’s artificial pancreas creates living beta cells, seaweed (similar to seaweed used to wrap sushi), and a light source. The seaweed uses the light source to make oxygen, which the beta cells use to produce insulin for the body. The seaweed consumes the carbon dioxide byproduct of this production. The seaweed is kept alive in water droplets. The entire device is the size of a pacemaker.

The B02 Tm is already undergoing small animal testing at laboratories, and will soon begin trials on large animals. Since the artificial pancreas is a completely new device, clinical trials at every stage will be particularly scrupulous, and will probably take a long time and cost a lot of money. However, if successful, it could be a boon to diabetics, replacing all current diabetes devices and even insulin shots.

Beta-O2 was founded by endocrinologists Pnina Vardi and Constantine Bloch, and by serial entrepreneur Dr. Yossi Gross. The company’s CEO is Chanan Schneider. The company has raised $7 million to date. IVC Online states that the first investor was Vitalife Life Sciences Venture, followed by Pitango Venture Capital and the government’s Heznek start-up fund. Sources inform ''Globes'' that Boston Scientific invested a few million dollars in the company six months. That investment was unrelated to the current negotiations.

Published by Globes [online], Israel business news - www.globes.co.il - on February 6, 2007

__________________

Endo appt tommorow!

2007-02-05T21:24:00.000-06:00

Wish us luck! I am on the offensive and ready to do my best to get what we want. Our goal is to get the ball rolling on the pump and to get a script for a continuous glucose monitor. We have already decided if this appointment is anything like the first one that we will be switching to Sioux Falls. I have already talked to J and L about Sioux Falls and they are both happy there. I don't mind driving there every three months if it means that we have a better quality of care than what we are currently recieving. Oh yes and I plan on asking for a switch to Apidra but doubt that will happen.

H has been doing pretty well. Lots of lows (50s-60s) but very few highs. It just seems with her that we either are going to be high all of the time or fight lows, poor baby :( her body is just not giving us a middle ground.

We made it through Influenza A pretty good! H, B, DH, and I never did catch it and M came out of it really quickly once we got everyone on medications. I was really scared that it was going to be a nightmare! That will teach me to look at the positive. That glass IS half full not half empty!

J and I started up a google group (like a yahoo group) to try to bring all of us closer together and a place to store our wealth of information LOL. I would really like to see a good strong support group in place in our area! J, L, the kids, and I met at thinker toys on Saturday and had a great time! It really makes a huge difference in H's attitude after we spend time with other D kids. Oh and I must admitt it helps me feel better too.

I suppsoe back to work again :D Busy day tommorow for all of our family.

Ok give me a break :(

2007-02-04T14:04:00.000-06:00

Ok, I know that this is my blog dedicated to Type 1 diabetes but the lactivist in me is just enraged about this!

Overzealous Big Pork Stomps on Breastfeeding Blogger

Thursday, February 01, 2007

UPDATE: If you've come via a direct link, make sure to read "An Update on the Pigsteria...

Some day, when Emmitt is a little older and we look back on his first year of life, we'll fondly remember the lactivist causes that we fought for. The time we staged the Delta Nurse-in here in Columbus, the time we were filmed for the South Korean documentary, the fundraising that we've done for the Mother's Milk Bank, the times we were featured in The Washington Post, The San Francisco Chronicle and a variety of other publications.

What we might not remember fondly is the time that the legal counsel for The National Pork Board sent us a threatening letter stating that they were prepared to sue us if we didn't bow to their demands.

Yep, you read that right. The Lactivist is being threatened with a lawsuit.

Why? Because I was selling a shirt that said "the other white milk."

First, a little background if you're new to the site. The Lactivist is a blog about breastfeeding and human milk banking. It's mostly a gathering place for breastfeeding moms to come and share their thoughts and experiences and to keep up to date on the latest issues in the fight for the rights of a child to eat in public. To help fund the site (and to raise money for the non-profit milk banks) I have a CafePress store that sells t-shirts with funny pro-breastfeeding slogans. Things like "Milk on Tap" and "That's my baby's lunch you're staring at."

Thus...the shirt that read "the other white milk."

I received a letter this morning from Jennifer Daniel Collins, an attorney at Faegre & Benson that represents The National Pork Board. It stated, for the most part, that my use of the phrase "the other white milk" violates their trademark on the phrase "the other white meat." As such, they've demanded that I remove the shirt, demanded that the image of the shirt be removed from any site I know of, demanded that I destroy any shirts that exist with the logo and demand that I not at any point in the future use the phrase in a commercially profitable way.

(Want to read ALL the demands? Download the C&D as a PDF file.)

Apparently the National Pork Board is worried that someone might come to my breastfeeding blog, check out the shirts and worry that when I say "white milk" what I really mean is "thick and juicy, straight from the hog PORK." Come on now, be honest...were you confused? Because I sort of thought I was comparing breastmilk (which just happens to be white) with the milk of a variety of other animals (cows? goats?) that happen to produce white milk (not kangaroos though, their milk is pink) and that often gets fed to infants INSTEAD of breast milk.

Wait, it gets better...

As best I can tell, the issue that REALLY has their panties in a wad is expressed in this quote from the cease and desist letter:

"In addition, your use of this slogan also tarnishes the good reputation of the National Pork Board's mark in light of your apparent attempt to promote the use of breastmilk beyond merely for infant consumption, such as with the following slogans on your website in close proximity to the slogan "The Other White Milk." "Dairy Diva," "Nursing, Nature's Own Breast Enhancement," "Eat at Mom's, fast-fresh-from the breast," and "My Milk is the Breast."

Go back and read that again. "apparent attempt to promote the use of breastmilk beyond merely for infant consumption."

Do they think I'm trying to an promote an adult breastfeeding fetish??!

Are you freaking kidding me?

Do you think they actually took two seconds to read the site, or do you think they just glanced and fired off a legal template with a few fill in the blank options?

So let's be clear about what we have here.

We've got a hobby site by a work-at-home mom that aims at helping to educate the public about breastfeeding and human milk banking. A site that has raised nearly $2000 (more than a third of its total profit over the last year) for the Mother's Milk Bank of Ohio. A site that has made a measly $8 dollars (count em, ONE-TWO-THREE-FOUR-FIVE-SIX-SEVEN-EIGHT dollars) off the sale of this shirt that is supposedly doing so much damage to people's desire to eat pork.

It's not like I'm selling a shirt that says "Breastfed babies don't grow up to be porkers" or something that might tarnish pork's good name. (It's also been suggested that I create shirts that read "The alternative white milk…" and "The auxiliary white milk…" would those get me sued too?)

I understand that Trademark law requires that a company "zealously" protect their trademark so that they can continue to hold on to it. Unfortunately, the ease of the Internet makes it really easy to fire off templated legalese emails at anyone and everyone that even comes CLOSE to the concept of the trademark. Big companies know that most bloggers have neither the time nor the resources to fight back, so even if the big company doesn't have a case, they win.

Now let me make one important point. I don't much care about selling the shirt. In fact, CafePress had removed it from the site before I ever even saw the letter from the law firm. It really doesn't matter to me if I ever sell it again. It's certainly not the cleverest slogan I've come up with so it's no big loss. What I'm ticked about is that rather than taking two seconds to send me a nice email to request that I remove it, they came in guns a blazin' with a lawyer crafted nasty gram that actually includes the phrase "We trust that after you have reviewed this matter, you will conclude that the better course is to promptly comply with National Pork Board's demands herein."

I don't have a lot of tolerance for bullies.

I still have a few days to decide what I'm going to do. Anyone know a good pro bono lawyer that's sympathetic to the breastfeeding cause?

How can you help?

Blog my friends…blog away. Share this post with discussion forums, social media sites, bloggers…anyone you can think of that will be as outraged about this as I am. Feel like shooting a few letters off to the marketing and PR departments of the National Pork Board (or your favorite reporters and journalists) to share your opinion of this type of bullying?

To note, I'm going to be keeping a list of all the places that this gets covered at the bottom of the post, so if you blog it or post it somewhere, drop me an email and let me know... (jennifer at thelactivist dot com)

Here are quick button links to some of my favorite social media sites.

Here's some contact information:

You can email the Pork Board directly. Or, you can contact the relevant folks in the marketing and PR departments.

Jeff Hartz - Director of Marketing Communications
(515) 223-2629 JHartz@pork.org

Joy Johnson - Vice President Marketing
(515) 223-2631 jjohnson@pork.org

Michael Wegner - Vice President Communications
(515) 223-2638 MWegner@pork.org

Teresa Roof - Public Relation Manager
(515) 223-2616 troof@pork.org

Gimme a Break!!!!!! I understand copywrite but holy cow (or pig) you have stuck you foot into it this time!!!!!

2007-02-02T22:08:00.001-06:00

Posted on CWD forums.

2007-02-02T11:58:00.000-06:00

This was post on the cwd forums and it really struck a nerve in me.

A good article I recieved, And a book to look into~

I get D-Life newsletters sent to me and here are 2 of the articles. Some things she says really make you feel not soo alone,I wonder and worry about the same things everyday!! Just thought I'd share~Jennifer
~~~~~~~~~~~~~
The Questions I Keep Asking

By Karen Hargrave-Nykaza

As I begin my fourth year of parenting a child with diabetes, I find myself still struggling with many of the same issues and questions that plagued me when our son was first diagnosed: When will I feel in control of this disease? How will I make his life “normal”? Will I be able to keep him safe? Is there ever going to be a break from thinking about this disease?

The three plus years we have lived with diabetes have added even more questions to the list of those we struggled with in the beginning: Are the choices we make now good enough to ensure him a long and healthy life? One that is free of diabetes complications? When he thinks back on his childhood, will he remember having fun and being carefree, or will he think of a nagging mother asking him to test or that he was the “different” kid in school? As he gets older and goes off to college, will he be able to handle his own diabetes care, and all the challenges that go with it, all by himself?

The original questions remain and more daunting, long-term questions have been added to the list. This is where the balancing act that is diabetes comes into play. You hear the phrase “balancing act” so frequently in relation to diabetes, but it usually refers to carbs and blood sugars, or diet and exercise. The balance I am referring to here is between allowing yourself to consider all the serious questions I listed (and more) and becoming completely preoccupied with those concerns. So the big question becomes, “How much is too much, whether you are referring to carbs or worries?” Whether you or your child is the one with diabetes, you will have to figure out this balance for yourself. This sounds so simple and obvious, but when diabetes invades your life - as I am sure you are well aware - it is neither. You are so certain there must be a single way to handle it that you become engrossed by what others are doing to manage it more successfully than you are. And you are so desperate for a concrete answer, just one answer.

I have spent the past month or so asking myself the question: “How much is too much?” referring to carbs and sweets in my son’s daily diet. I have asked it of myself, my husband, diabetes reference books, diabetes resources, other parents, and his primary diabetes care physician. No two answers that I received were the same. That told me something immediately - that there really wasn’t that one answer I had been looking for, no matter how desperate I was for that answer. Again this sounds so simple, but it isn’t. From that evolved the second question: “How much is too much?” referring to worrying about his health, diet, and potential diabetes complications. If I asked the same sources I consulted for the first question, I knew I would get the same variety of answers.

No matter how much we want there to be one answer about how to live with diabetes, and how much we think if we just do what this person does we will obtain the same results, living with diabetes just doesn’t work that way. This has to be one of the most frustrating aspects of living with the disease. What is “the answer” for one person is not the answer for the next. What works for one person does not work for the next. We each have to find that balance not only when it comes to carb ratios, food, and exercise, but also when it comes to dealing with the emotional aspects of balancing how we will live with the real concerns that surround having diabetes and how much leniency we will allow ourselves or our children to maintain what resembles a “normal” life. We have to accept that everything is a trade off and what may work for another child just may not work for our child. This is a process that will probably take a lifetime. At times, we will need to be reminded to give ourselves a break, and remind ourselves that getting there is a journey, not a destination. We have to work, learn, and struggle together to find the balance that is right for us.

Spoke to soon.

2007-01-27T23:20:00.000-06:00

My middle daughter M was diagnosed with Influenza A :( Now were are all on medication and trying to keep H from getting it. Ugh I hate this. Pre-diabetes I would have said oh well, no biggie. Post dx were are on fever watch and freaking out. M ran a fever from Thursday middle of the night to early this morning always around 103 WITH motrin :( She ate almost nothing but kept telling me she was sooooo thirsty which of course gave me the D freak outs so I made dh take her to the ped who stuck a swab up her nose so far it bled :( My poor little girl. I wish I could have taken her myself but I could not get a hold of the parents of the two kids I had here. Oh well, this to shall pass!

In a lull :D

2007-01-25T22:00:00.002-06:00

Things seem to be evening out for us atm but that may be the calm before the storm. H's numbers have been pretty good since we have changed her ratios. She is now 1:5 for breakfast 1:9 for lunch 1:12 for dinner and 1:15 for snacks. I would have to say there is no way we are in the honeymoon. Not much else to report, just working and trying to come to some sort of sense of normal :D

Another hopeful article

2007-01-25T22:00:00.001-06:00

Originally posted on the CWD website

Mom's Stem Cells Might Treat Child's Diabetes

http://www.healthcentral.com/diabete...-29369-31.html

Mom's Stem Cells Might Treat Child's Diabetes

MONDAY, Jan. 22 (HealthDay News) -- Cells passed from a mother to child
during pregnancy can grow into functioning pancreatic cells that produce
insulin in the child, U.S. scientists report.

The scientists also found that children and young adults with type 1
diabetes had higher levels of maternal DNA in their blood than siblings or
unrelated people without diabetes. This suggests an attempt to repair
damaged tissue.

The findings suggest that it may be possible to harvest a mother's stem
cells in order to treat her diabetic child.

Type 1 diabetes is an inherited form of the disease where individuals do not
have enough functioning pancreatic islet cells needed to produce insulin.

The findings, published in the Jan. 22 issue of the journal *Proceedings of
the National Academy of Sciences*, may help in the development of new
treatments for type 1 diabetes, say researchers at the Fred Hutchinson
Cancer Research Center in Seattle.

They said they found no evidence that the mother's cells were attacking the
child's insulin cells or that the maternal cells were being attacked by the
child's immune system.

"We think the maternal cells may be helping to regenerate damaged tissue in
the (child's) pancreas," Dr. J. Lee Nelson, a member of the clinical
research division at Hutchinson, said in a prepared statement.

So sad :(

2007-01-21T23:48:00.000-06:00

The daughter of a woman that my hubby works with was diagnosed with type 1 yesterday. We went to the hospital to let them know that we are here if they just want to talk or vent. I left my name and number and right now that is all I can do. The day of begining education is still so clear to me that I am sure they are both just reeling right now :(

Article posted on a yahoo group I am subbed to

2007-01-18T17:21:00.000-06:00

http://www.newscientist.com/channel/health/dn10812-breakthrough-sheds-light-on-cause-of-diabetes.html

Breakthrough sheds light on cause of diabetes

* 17:56 15 December 2006
* NewScientist.com news service
* Alison Motluk and Linda Geddes

One of the root causes of type 1 diabetes may need rethinking – the
condition may be triggered by faulty nerves in the pancreas, a new study
reveals.

Type 1 diabetes has long been described as an autoimmune disease in
which the body’s immune system targets islet cells in the pancreas,
eventually destroying their ability to produce insulin. Without insulin,
the body cannot convert glucose into energy, so people with type 1
diabetes have to regularly inject themselves with insulin to survive.

However, what initiates the original attack on the pancreas had been
unclear. It now seems that the nervous system may play a key role,
according to researchers in Toronto, Canada. The team eliminated the
disease in diabetes-prone mice by knocking out a set of faulty sensory
nerves. They believe the finding could chart a new path in treatment of
the disease in humans.

Michael Dosch at the Hospital for Sick Children in Toronto, and
colleagues, had previously shown that not only islet cells, but the
nerve tissue around them was affected as diabetes set in. For this
reason, they suspected that certain sensory nerves of the pancreas might
be involved. These nerves release a neuropeptide called "substance P"
and are usually responsible for ensuring that islet cells produce the
right amount of insulin.

The researchers used a chemical to obliterate these nerves in a breed of
mice genetically predestined to develop diabetes. “It turns out if you
remove these specific sensory nerves, the animals don’t get diabetes,”
says Dosch. “It was stunning.”
Single injection

When the researchers examined the nerves of diabetes-prone mice and
compared them with normal mice, they found that the nerves of
diabetes-prone mice do not producing enough substance P. This causes
islet cells to overproduce insulin, leading to insulin-resistance and
eventually islet-cell death. It is at this point, says Dosch, that the
immune system is called into action, triggering diabetes.

The team wanted to know what would happen if they gave diabetic mice a
top-up of substance P, so they injected some directly into the pancreas.
Astonishingly, the diabetes disappeared overnight and the mice remained
diabetes-free for weeks, and even months in some cases.

If the same were to happen in humans, a single injection could keep the
disease at bay for years, says Dosch.
Other mechanisms

“These are interesting and original observations, and could potentially
open new avenues for diabetes therapies,” says David Leslie of the
Centre for Diabetes and Metabolic Medicine at Barts and The London,
Queen Mary’s School of Medicine and Dentistry in London, UK.

The findings also support previous suggestions of a possible connection
between autoimmunity and the nervous system. However, “there are almost
certainly other mechanisms by which these mice, and indeed humans, get
type 1 diabetes,” Leslie says.

About 85% of human diabetics are believed to have impaired sensory nerve
function, but it has always been assumed to be a consequence of the
disease, rather than a cause, says Dosch.

"This work merits serious consideration,” says Matt Hunt, Science
Information Manager at Diabetes UK. However, since the study was carried
out on specific neurons in mice, “future work in human populations with
high rates of type 1 diabetes, such as Scandinavia, would seem a
possible area to pursue," he adds.

From January 2007, Dosch plans to look for evidence of sensory
abnormalities in babies born to high-risk families, and will follow them
to see if impairment is predictive of disease.

Journal reference: Cell (vol 127, p 1123)
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I cried last night

2007-01-14T13:45:00.000-06:00

No, that is not the right phrase........I sobbed, I bawled like a baby, I completely lost it. Hubby and I had a fight and I started to cry and then just lost it from there. It was the first real mourning that I had since diagnosis. It was terrible and I think I feel worse today. I cried so hard that I woke Hailey up :( I told her how sorry I was and that I was just so sad that she had to go through all of this, sad that she had to take shots, sad that I could do nothing to take it away, etc... I was able to compose myself once she came into the room but before that point I think I sobbed for at least 15 minutes. I knew that I had to have a good cry soon, that it was a part of the process but I had done really well in keeping it to a few single controllable tears here and there. I don't think in my entire life I have EVER cried that hard. Now Hubby is really mad at me for doing that :( His exact words were "I will never forgive you for doing that, Hailey already feels awful and for you to act like that is unforgivable" Ugh, my eyes and head hurt. Hailey has been fine today and I really think that it is good for her to see that it is ok to cry and feel bad about this, hopefully it will let her know that she can cry too.

The snow is coming down pretty hard right now, makes me think of when I was a child and the hopes of snow days from school, snow men, sledding, and ice skating. Almost makes me feel "clean" and "fresh" today.

I suppose it is Sunday and I better get back to cleaning.

I am "that" mom

2007-01-13T15:10:00.000-06:00

I just figured it out lol. I am the mom that other mom's are super nice to her face and are rolling their eyes at once they are gone. I took H to a birthday party at 2 today and stayed until a few minutes ago. Everyone is nice to my face but I caught the hint today, I am annoying them with the amount of time I am spending worrying about Diabetes. I really cannot expect them to understand, before we started living with D I would have been one of them. I wasn't going to stay as long as I did, H is 10, but..... the party is 10 miles out of town and there are 20 girls there. So easy to miss H acting strange when everyone is running around like 10 year old girls do. And that is saying that she shows symptoms, lately she has been all over the place with no clue to whether she is high or low. I HATE being "that" mom. I don't want to do H a disservice by being so over protective, it really is hard not to be though :( I finally decided to leave when H would come over every 10 minutes to sit with me instead of playing with her friends, she needs to play with her friends not hang out with her mom. So now I sit here watching the clock so I can go back and pick her up 20 minutes to go..............

Been a while

2007-01-04T13:01:00.000-06:00

Wow, it has been a while since I have posted. We had a bumpy holiday but everyone "lived" through it lol. The girls went back to school today and boy was I ready for them to go! I was getting a bit tired of hearing "I'm bored" or "can I play Nintendo again?"

Hailey had a great time at the indoor water park with her girl scout troup, I am actually hoping to take all of my girls in the near future. I had a wonderful play area in the middle of water for the younger kids and 2 nice slides and lily pad jumping area for the bigger kids.

I am now worried about our youngest B :( I try so hard not to worry but ahhh, I can't help it. Here is a link to a thread I posted about it, too long to retype again here lol Children with Diabetes I am to lazy to retype it today :P I pray every night that it is a freak occurance and all will be fine with her.

I suppose I better go get some work done before the kids wake up and get home from school.

School is out :D

2006-12-22T10:07:00.000-06:00

I can't believe it is almost Christmas! The kids got out of school early yesterday and they are offically on break :O My house has been crazy with the extra school agers but I do like the comotion, makes the day go faster and keeps the kiddos busy ;)

H has decided she does not mind taking her shots premeal so we are sticking with it. Kinda ticked me off since I went to the mat with the nurse at the endo's office and after I got off of the phone that she doesn't mind it, oh well, her numbers are better this way...

Ok, now I can't figure out why my comp is writing so funny, Bella must have hit a key lol.

H's Girl Scout party got postponed until next Wednessday, I am rather relieved since her dad is on vacation and he should be able to go along to keep an eye on her. I can't help but be so overprotective right now. The leader is having one of the other mom's who is a nurse come along but I did not want to go into how different each field is and since the is an OB nurse she really would know very little about what to do if H went to low. People just do not get why I get so upset. Everyone knows so much about type 2 they think that they are the same. Of coarse any parent of a type 1 KNOWS how different they are. Heck I am an EMT with 1 year of nursing school and I had no clue how serious and scary type 1 is.

I suppose I better get some work done. I doubt I will be able to post again until after Christmas.

Happy Holidays!!!!!

Suppose to call the Endo today

2006-12-19T10:51:00.000-06:00

and H's numbers have been really good so I am certain they are going to want us to stick with pre-meal shots :( We have been doing breakfast and lunch pre-meal and dinner post-meal. H doesn't mind the breakfast because it is always the same but lunch has been a struggle. The school changed H's lunch yesterday and no one told H until AFTER she had taken her shot so of coarse we had to ask the cooks for a couple of pieces of bread to cover the extra insulin. I spoke with H's teacher afterward and she did say that they do this often but never tell anyone so I don't know how we are going to handle this..... H really does not want to do the pre-meal shot and I don't blame her, enough has happened to her that I do not want to go changing EVERY aspect of her life. She was a grazer pre-dx and now has to cut out all food in between meals and snacks and that has been a large enough adjustment for her. Oh well, we will see how the Feb appt goes and take it from there. H did say that she liked that her numbers were better :D

We were suppose to go see our therapist tonight but she called a bit ago and is sick so we won't see her now until January 9th :( Oh well, I am sure we will get through the holidays and have lots to talk about lol. I think since mil and I still need to do our yearly Christmas trip together I am going to suggest we go tonight before the "big" storm hits, I doubt we will get that much as our weather men are always wrong but of coarse there is always that chance. Ahhhh the holidays :D

Two lows and a crabby girl

2006-12-18T11:02:00.000-06:00

We had two lows over the weekend, both in the 60's. H absolutely HATES taking her shot before her meal and so do I. We have to sit and fight over her picking what she is going to eat and once she does it she will take her shot and then decide she is no longer hungry. We have been only doing the before meal shot for lunch and breakfast trying to take it slow as someone suggested ;) I call the Endo tomorrow with her numbers since the switch and I am sure she will get pissy about us not doing it at every meal and snack.... oh well, we are the ones that are living this.

It is going to be a busy week for us. M has her school program tonight, tomorrow is our appointment with the therapist, Wednesday I meet with H's girl scout leader to go over everything she needs to know for Friday, Thursday I have to finish Christmas shopping with MIL, and Friday is H's girl scout trip. I am extremely nervous about this but H wants to go bad. I had thought the party was on a Saturday and originally told H she could go and I would go with, my bad it is on a Friday. I cannot afford to take any days off from my childcare so after much thought and talking with her leader I have decided to let her go. As long as she monitors her sugar closely and calls me often she should be fine. They are going swimming at an indoor water park AND having pizza afterwards. Wow, I am a nervous wreck about this but I must let H be as normal as possible!

I suppose I better go start making lunch :D

Switching the shots

2006-12-15T14:38:00.000-06:00

Ugh, the endo wants us to have H take her insulin before meals now :( She never eats consistently so I asked my sister to pick up some juice boxes for the lows I am sure will be ahead. Maybe after seeing some lows they will let us go back to post meal shots. I understand thier reasoning but the last thing I want to be doing is forcing a bunch of junk and juice down her throat because she did not eat! What else can I do? They also said I have to call the school and get the carbs from them. Yeah right, I guess I will try again....

2006-12-14T22:44:00.000-06:00

H was very emotional today, not sure what her problem was. She was angry one moment and crying the next. Her numbers were decent today so I don't think that is it. She was definitely not herself though. I am sure she is picking up on my despair. I am doing my best to keep my *happy* mask firmly on my face but I am certain the *despair* mask shows through on occasion.

B is now sick. She has been running a fever with a nasty cough and runny nose. Fortunately her snot is clear so I am certain it is viral. I really hope that it runs it's coarse quickly. She hardly slept last night and refused to nap again today. I was really hoping that I could meditate today since I could not yesterday. Maybe tonight after I clean the house.................one can hope ;) I will probably be so tired that I will end up snoozing instead.

M and H had a fight tonight. H was waiting for M to get out of the shower, I am not sure what was said to start it but to sum it up M was calling H a liar saying that her diabetes was going to go away and H was telling her that it was not going to and if she did not stop being bad she was going to get it too :( We had a long talk but I am certain that M doesn't believe me and thinks that she is going to "catch" it now. I was able to hold back the tears during this talk but man was it hard! I pray every night that the other two girls do not become diabetic, I just do not think I could cope with that!

You know my mom and grandmother always told me "God only gives you as much as you can handle" My mom called tonight and said it to me again and for the first time since I was a child I yelled at her. I asked her what kind of God would do this to a child, this has nothing to do with God. I then hung up on her. I did call her back later and apologized for yelling and hanging up. I tried to explain to her how I feel that God has abandoned us and she held firm to her faith. I wish I could feel that certain that there is a God with a plan for us. I never in really questioned the existence of God until now.

Finding my center

2006-12-13T11:06:00.000-06:00

I am going to spend this afternoon meditating and praying. I feel lost and cannot find my center. Never in my life have I felt so alone and confused. This disease has no rhyme or reason, it is always changing. I need to find some sort of balance in myself. H is high again today and I had her take an extra unit to try to bring her down from being over 200 last night, she should not be high. The Endo basically told me this morning that this is how diabetes is in children, it will not be the same for more than a few days or even if your lucky a couple of weeks. She says what works this week will not work next week. There is no formula to plug in and say "Ok X+Y=Z" According to the Endo in type 1 diabetes X+Y will sometimes equal R J K D P B or any other acronym you can come up with :(

Dh and I saw the therapist again last night and she flat out said that she does not know what else to do other than try to talk about how we are feeling and coping. Selfishly I was hoping she would tell me "Go do xyz and you will feel better and in more control" Ahhhh well, hopefully some enlightenment will come to me this afternoon.

How?

2006-12-12T22:02:00.000-06:00

How am I going to keep doing this? I know that I must therefore I continue to live hour to hour but right now I just want to crawl into a hole and die. It is not fair!!!!! What did I ever do for my daughter to deserve this? I cannot stop crying tonight.

Freak Low

2006-12-12T10:29:00.000-06:00

Yesterday H ran high all afternoon so at 3 pm since it had been 3 hours I had her take 3 units of insulin to bring her down from 515. All was well and her predinner bg was 115. After dinner she went to take her humalog and started crying that she felt low, I told her that she needed to hurry up and take her humalog since she was probably climbing back up and that is why she felt icky. After some fighting and tears she took it and 5 minutes later comes to me crying that she felt low (every other time she has felt low she was high) so I told her to go ahead and check. It was 43 :O :O :O :O :O this was 30 minutes postmeal and 5 minutes after taking humalog!!!!! After a moment of panic we got some sugar into her and she was up to 60 and SLOWLY climbed from there after a few hours of feeding her sugar. I called the endo and he thinks I gave her too much insulin too close together and that her correction factor needed to be moved from every 50 over to every 100 over, *I* think her body just happened to kick out some insulin right before dinner. She never broke 200 last night which really shocked me since that much sugar should have sent her sky high. We checked every 2 hours overnight and ended up having her drink a glass of milk at 3 am when she was 94. I HATE Diabetes!!!!!!

Posted at CWD

2006-12-11T22:45:00.001-06:00

How God Selects The Parents Of A Child With Diabetes

Most men and women become parents by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how parents of children with diabetes are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his Angels to make notes in a giant ledger.

"Armstrongs, Beth and John, a son. Patron Saint Matthew."

"Forrests, Marjorie and Tom, a daughter. Patron Saint Cecilia"

"Rutledges, Carrie and Howard, twins. Patron Saint Gerard. He’s used to profanity."

Finally, he passes a name to an Angel and smiles. "Give them a child with diabetes." The Angel is curious. "Why this one, God? They are so happy." "Exactly," smiles God. "Could I give a child with diabetes to a mother and father who do not know laughter? That would be cruel."

The Angel asks, "But have they the patience? "I don’t want them to have too much patience, or they will drown in a sea of self-pity and despair," God replied. "Once the shock and resentment wear off, they’ll handle it. I watched them today. They have that feeling of self and independence that is so rare and so necessary in a parent. You see, the child I am going to give them has her own world. They have to make it their world and that’s not going to be easy."

God smiles. "This family is perfect. They have just enough selfishness." The Angel gasps. "Selfishness? Is that a virtue?" God nods. "If they cannot separate themselves from the child occasionally, they will never survive. Yes, this is the family I will bless with less than perfect. They do not realize it yet, but they are to be envied. I will permit them to see clearly the things I see…ignorance, cruelty, prejudice…and allow them to rise above them. They will never be alone. I will be at their side every minute of every day of their life because they are doing my work as surely as if they are here by my side."

"And what of their Patron Saint?" asks the Angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

I am just so mad right now

2006-12-11T21:48:00.000-06:00

I should not let my brother in law have this kind of effect on me but tonight I just want to call him and give him a piece of my mind!!!!!! He only has to see us once a year at Christmas at dh's parents house and tonight my mother in law tells me that they have decided to switch Christmas with them to Saturday *&(*^^(*&^&%(*(^$D@#^&#@#^& COWARD!!!!! He knows that H wants to talk to him about diabetes! He has been diabetic since he was 20 and now has a pump. H wants to talk to him about the pump, wants to see HIS site, wants to TALK TO HIM. That stupid $#$%^&*(&$!@#$$$%^&** What did she EVER do to him! If it was his step son I WOULD TALK TO HIM. The prick lies to me when H is in the hospital saying that he is going to stop by and talk to her and never does but ooooooohhhhhhhh grandma is in the hospital for a freaking BLADDER INFECTION and he is by her bed all the time! She wasn't about to DIE from a bladder infection!!!!!! He NEEDS to be there for H, he SHOULD be there for H, he is living this and can be the BEST person to talk to her! When my dh's cousin was in an accident the ENTIRE FREAKING FAMILY showed up at the hospital to show support to them but not ONE SINGLE PERSON FROM THAT FAMILY was there when H was in the PICU. Arrrrrrggggggggggggggghhhhhhhhhhhhhhhhhhhhhh Someone help me put these people out of my mind! I now know who really cares about our family and the rest of them can stick it!

On a roll today ;)

2006-12-11T13:25:00.000-06:00

I set up a "play" date for H with another little girl today :D We are meeting her at Hardeez on the 30th of this month. The little girl is 9 and has been dx since she was 2 years old. I cannot even imagine how much work that would be! Phone so I better run ;)

What a nice weekend!

2006-12-11T10:48:00.000-06:00

H finally got to meet another kid with diabetes! She was so excited :D It was so nice for her to actually get to see another child who has to deal with the same difficulties that she does. We met at Burger King and the kids hit it off right away. N is 9 and in 3rd grad who was diagnosed 2 years ago, he has a little brother who is 7 (M's age). The mom was super nice and we plan to meet up again. We are hoping to get a support group started up, we both agree that we cannot be the only parents in the city that feel so isolated. The little boy N is just a cutie. N is pumping so he showed H how it works and they talked about how it goes in and that it hurts a little but not as bad as MDI. I have not seen H as happy as she was Saturday since diagnosis. Hailey said to me on the way home "Mom, N is the kind of boy I want to marry when I grow up" I told her that she is a long way from grown up but that I agree he was a super nice boy. It was rather ironic when N called a few minutes later to talk to H again :D I think he likes her just as much as she likes him. We exchanged phone numbers and H took some pics of them together with her camera phone. We are going to be to busy with the holidays coming to meet this month but plan to meet again the 2nd Sat in January.

Suppose I should go feed the carpet apes :D

Paranoia

2006-12-08T12:58:00.000-06:00

I feel it's slimy little tentacles reaching into my brain :( My middle dd M was sleeping last night and I went to brush her hair out of her face and she was sweating profusely. I wanted to test her BG soooo bad it was almost unbearable. I find myself taking mental notes on every scrap of food and ounce of water that goes into B and M's mouths. Both M and H had nighttime enuresis but now H has gone dry most nights since dx and the endo said that her enuresis may have been due to the diabetes so now I wonder what does that mean for M? Dh does not want to have M and B tested for antibodies, he just doesn't want to know :( I think on this one I may have to just go against him and request it done, even though the Endo never even mentioned it I know the test is out there.

On a happier note the girls had a blast cheering at the wrestling meet last night! I was so mad at myself for forgetting the camera and video recorder, oh well I will remember for the basketball game.

I suppose I should get off of the comp. I have been waiting for a custom order of yarn (my yarn someone else dyed) and it finally arrived today! I will never ever ship yarn to be dyed to Canada again, it took forever to get back and I don't know if I will get the woman's order done by Christmas.

Thursday

2006-12-07T10:34:00.000-06:00

Things seem to be going OK the last couple of days, lots of in range numbers and very little highs or lows :D

H and M went to cheer camp last week so they get to cheer tonight at the wrestling meet. I hope we are able to keep her numbers stable with all of the excitement. I already have a little bag packed with Gatorade and snacky stuff. This will be the first time since dx that she will be VERY active. Both of the girls are excited though .

H went to see a child therapist yesterday, I am really worried about how this is effecting her emotionally. DH had to take her since I can't take time off of childcare and he said it went well. The therapist would like me to be at the next appointment so DH told her they had to schedule after 4:00 when I could get a sub for the daycare. I have not had a chance to talk in depth with H about how it went but she said it went "fine" (the answer to everything lately lol)

We still have done absolutely no Christmas shopping yet :O I have no clue how we are going to swing it. I had to pay for all of these bills and the trip to the endo. It is expensive to have a kid in the hospital for a week even without the medical bills. We spent a TON of money on gas to and from the hospital and on food since DH spent the entire week up there and had to eat something. Oh well, I am sure everything will turn out OK.

I suppose I better go start lunch.

Christmas program was nice

2006-12-05T12:08:00.000-06:00

H ran a little low for once before the program so I instructed her to chug some gatoraid and eat a few crackers before playing. She plays trumpet in the band and did rather well considering she has missed so much school lately. I had to laugh at one point she messed up and played while everyone else paused :D She was able to laugh it off and kept going, I am so proud of her! She sang really well considering she did not know the last song at all since the only started working on it 2 weeks ago. I told her just to lip sink if she was unsure ;)

M was not looking well during the entire concert, very pale and complained of a stomach ache. If dh had not been sitting right there I would have tested her sugars, talk about paranoid. My other girls cannot get sick without me automatically thinking Diabetes :( I try so hard not to make them paranoid but it is difficult.....

M woke up this morning not wanting to go to school again, I wonder why she does this? Everytime we go anywhere all of the kids her age are drawn to her and are always yelling Hi to her so I don't think it is a "friend" thing. I don't know, I ask her about school and she says "I don't want to talk about it" The more I press for information the more she clams up. Some days I really do not understand her but love her the same.

H's teacher called today, H has been running at 78 even after a snack of teddy grahams so I told her to let H drink some of the "emergency pop" that I sent. She called back a few minutes ago to say that she headed to PE at 201.

I suppose I better go pull out the lunch menu and figure H's carb before she calls to find out how many units to take.

I hate puke

2006-12-04T11:21:00.000-06:00

Hailey started vomiting at 3 am Sunday morning. I went in to do her 3 am finger poke and she looked at me and said "mom my stomach hurst" I told her to lay down and I would get her a drink of water (she never wakes for the 3 am bg check). By the time I got back she had vomited all over the place. I just wanted to cry. She spent the whole day throwing up and I spent the entire day pressing her to drink and eat. She finally quite vomiting around 10 last night.

We went ahead and sent her to school today since tonight is her Christmas program and whe does not want to miss her first program in middle school. So far so good, the school called me with her 10:30 am number...160 wooooohooooo the best range in quite a while!

The newspaper just emailed me the article they want to put in the paper about Hailey so I better go read that so I can get back to them.

Yep, B is sick also :(

2006-12-01T11:33:00.000-06:00

She usually sleeps until 9:30 or so but had slept in this morning and sure enough I went to get her up and the entire crib was covered in puke (gag) I just called hubby home from work and asked him to buy pedialite and chicken noodle soup, I sure hope he hurries home. I tried calling the mom of the one daycare kid I have here today and she can't get off of work, she isn't worried about it since her daughter was puking last weekend :O would have been nice to know that! I just got a phone call from one of the school aged childcare kids, seems he was vomiting at school and she took him home also. I suppose we were due for a good puking illness, it has been about 4 years since we have had any of the childcare kids vomitting. Ugh...........

My poor girls

2006-12-01T09:59:00.000-06:00

It just seems we cannot catch a break :( When I got up for H's 3 am check my middle daughter M was vomiting. I kept her home from school today and she cannot even keep down water. I really pray that H and B don't the vomitting. B had failure to thrive when she was about 9 months old and still has not quite caught up to where her wieght should be, she cannot afford to lose even a pound. Of coarse H can't get it for the obvious reason with her diabetes, vomiting would be awful! Well, off to clean up puke covered sheets and hope it all hit the sheets and not the wall and down the bunk bed (ick)

Finally got test results back today

2006-11-30T09:58:00.000-06:00

Looks like most of her numbers are good. I was actually shocked that her A1C number was only a 10! Now is the sad part. The IGA was positive for one a negative for another????? The nurse is not sure what this means but thinks it means Celiac. I am just going to lose it if we have to add this on top of Diabetes. I am sobbing too hard to write anymore. I pray that the nurse is wrong.............................Ok scratch that entire part! The nurse just called back and after consulting with the Endo she is NOT positive for Celiac! She should have consulted with the Endo first before telling me she may be positive! I just spent an hour sobbing for nothing and now I am crying tears of relief.

Endo's office finally called

2006-11-29T10:42:00.000-06:00

After bugging them for over a week and leaving constant messages they finally called me back. H has her appt at 8:30 AM on Febuary 6th :( Now I have to take the entire day off just to meet with her for a half hour. I am going to have to start making the appts 6 months in advance! Just what H needs, another missed day of school. Boy, I am in a negative mood today. I need to go find something to be positive about.

What else could go wrong?

2006-11-29T09:11:00.000-06:00

My girls overslept this morning, which really is expected since they have had to stay up later due to bg checks and so on. I woke them up at 7:10 when I realized that I heard their alarm but they had not yet come out of thier room for breakfast. Then the kids missed the bus this morning *ahhhhh*. I sent them out 5 minutes later than usual which "should" be 5 minutes before the bus comes since it was so stinking cold I did not see a reason to make them stand out there for the usual 10 minutes when the bus is "usually" there at the same time every morning and they missed the bus. I don't need this stress :( So of coarse I had 6 kids back at the house crying because they missed the bus! I called my sister but it would have been at least 8:30 before she could get here so in desperation I call Vicki next door to ask if she would come sit with the other kids while I took the school agers. She was nice enough just to take them for me! She has to be to work at 8:00 so she just dropped them off on her way. I have to be sure to get her a big thank you of some kind. I called all of the parents and let them know what happened just in case one of them freaked out and had thier mom called :P I just want to cry!!! I cannot deal with this, it seams everytime I turn around something bad happens. Please God let something good happen! What have I done to deserve one bad thing after another? What did H do to deserve D? I know she did nothing in my heart but it "feels" as if we are being punished :(

I wish I could sleep

2006-11-28T21:59:00.000-06:00

It just seems that no matter how tired I am I just cannot drag myself to bed. Everytime I am about to head that way I think of another thing to do. Just like tonight, I think everything is finished and I may get to bed by 10 but here I am. I forgot to write in H's Home to School notebook so I had to sit down and let the teacher know about our ER trip and what is going on with her numbers. By the time I finished that it was 10 and I still need to shower. Might as well stay up now for the midnight bg check.

I was checking out www.childrenwithdiabetes.com message boards and it seems that one of the mom's there is getting a wish granted for her diabetic son! How exciting for them. I would love to give H the opportunity to do something like that. A trip to Disney, a Diabetic alert dog, ..... so much I am sure she would want as we do not have the means to do either of those things. The place that is granting her wish is www.dreamfactoryinc.com Unfortunatly you have to live near a chapter to have a wish granted and of coarse we don't, oh well. Hubby wouldn't want to do it anyway. I mentioned make a wish foundation to him the other day and he said no way, he did not want H to think that she was "disabled". I think he is in denial that she actually is now :( It makes me so sad to think that 2 short months ago she was "perfectly healthy" and now she has this horrible chronic type 1 diabetes :(

Another day another carb

2006-11-28T12:17:00.000-06:00

It just is not fair :( I am tired and pissed off and just want a break! I know it is selfish of me and I feel guilty for wanting a break but come on............I am in this house 24/7 counting carbs, policing sugars and shots, and monitoring all food intake. I need some time to be a woman and not just the mom of a daughter with Diabetes. I know, I know bad mommy you should not be so selfish :( No need to beat me up for it, I do a good job of beating myself up. H is home from school again today, her stomach was bothering her and after spending Saturday in the ER I decided it would be best to keep her home. Now I am beginning to wonder if it was just a case of "not-wanting-to-go-to-school-itis" since she has been fine and complaining about being bored *rolling her eyes*

I am rambling today for certain.

I can't believe how much our food bill has gone up, these snacks and lower carbs foods are not cheap. What a bad time for me to be low on kids, hopefully I will pick 2 up soon or else I will have to go get a 2nd job to pay the bills. I try not to let H see the financial stress that her Diabetes has put us under but it is hard not to when she is 10 years old and always beside me. Christmas is going to be awful for the girls in more ways than just the presents :( Makes me so sad to even think about it.

OK now I am crying again so I better just quite for the day and go back to figuring out what on earth I am going to make for dinner.

Ugh

2006-11-22T14:44:00.000-06:00

Well, I am in a position I had never expected to be :( On October 13, 2006 my oldest daughter was diagnosed with type 1 Diabetes. I am intending to use this blog as a sort of "diary" to try to sort some of the feelings that I have out. Seems today was a bad day to start this as I get a phone call from the school saying that baby girl's sugar is 534 :( Hopefully I will be able to blog more tommorow.

I hate T1 Diabetes

UPDATE!!!!!!!!!

For those that may be reading! Please help me fix this!

REQUEST FOR CGMS: DENIED BY INSURANCE

Oprah Show Idea: Faustman vs Type 1 Diabetes

Oprah Show Idea: Faustman vs Type 1 Diabetes

Invisible Mother.....

Top 10 Reasons I love our new Endo!

Taping

Cgms insertions

If you have the time this is an interesting presentation

Just so I don't have to keep searching

Paranoia, delusions, and hoping I am crazy.

M getting tested

continued

First trip since dx

I got sucked in!

Some personal thoughts on CGMS

The holidays are upon us!

ScottB's post on CWD

Hailey's walk article

Tommorow is the 1 year diagnosis day

So sad

Our sensor routine

Hmmm ok?? Found on LOL diabetes blog

My alarm clock is retired

For those still trying to hear the alarms at night

Vampire mom...

We are walking

Glucophone

My H put this together *Fixed Video*

Not fair

Didn't go so well

Back to school already!

A video just for our kids!

My H is in this one!

The Fair

This touched my heart today.

Feeling an inch high today

Finally an update

Pictures as promised

Photo of arm site

Arm site!

Phew what a night!

This is amazing!

Easter weekend

Update on CGMS

Posted on CWD message board

Winning some battles!

6 Months

Sitll waiting

Study posted by Jamie at CWD forums

We insurance approval for the CGMS

I found this on you tube tonight

To say that I am psyched is the understatement of the century!!!

The big storm

This is why I get up 3 times a night to check H's BS just for those that still don't understand.

Been a while

What I do to keep myself from going crazy

From Lanae: Little Things

We are getting the pump AND a CGMS!!

From the Children With Diabetes message board.

Endo appt tommorow!

Ok give me a break :(

Posted on CWD forums.

Spoke to soon.

In a lull :D

Another hopeful article

So sad :(

Article posted on a yahoo group I am subbed to

I cried last night

I am "that" mom

Been a while

School is out :D

Suppose to call the Endo today

Two lows and a crabby girl

Switching the shots

Finding my center

How?

Freak Low

My H put this together Fixed Video