I am SO excited to finally be able to share this with you all! For several years we have been following a doctor and her team that have been working on a cure for type 1 diabetes. Up until now we have always asked everyone to donate to JDRF. While this has been great and the advancements have been amazing, we have always wanted to bring more attention to Dr. Faustman and her team. We have been donating to her for a few years now. Lee Iacocca has supported her a great deal. His wife had type 1 diabetes and when she died he promised her he would help find a cure!
We know many people know about JDRF and so it is easier to ask for donations. We are wanting to bring more attention to the Faustman Lab and make more people aware that there is an actual cure going through human trials. I'm excited to be able to share this information with everyone when it is going to be a start of a new year! This next year we are going to be doing whatever we can to help raise money to donate to The Faustman Lab. It takes money to find a cure, and she found one so we want to help her and find the money! :-)
I will keep everyone up to date on what we will be doing to raise money. Two things we are going to do this new year is to sell Shanie's Dream Team t-shirts and also awareness bracelets! They are in the works so we will let you all know when they will be available!
For more information about Dr. Faustman and her team or if you would like to donate, please visit www.faustmanlab.org
I'm really excited for this new year and to be able to share the hopes for a cure for type 1 diabetes!!
Hope everyone has a VERY MERRY CHRISTMAS AND A HAPPY NEW YEAR!!
Friday, December 16, 2011
Sunday, December 11, 2011
24/7
Well as most of you may know from my facebook status, we had a rough and very long night last night. First I want you all to know that I am not complaining, I am just simply trying to bring awareness about type 1. And in doing this I need to share what this disease does and explain to everyone that this really is a 24/7 fight.
We had a fun spontaneous trip down to Bakes at 11pm because Shanie just had to have In N Out! SO since we ALL love In N Out it wasn't too hard to talk her dad into driving that far for their food. At 11:47pm Shanie's blood sugar was 252 when she tested before she ate. And we knew she put in enough insulin to cover her food.
At 2:32am she went to 497! At 2:50am she went even higher to 532!! At this point she was starting to feel sick. We know with her that when she gets that high and she starts to feel sick DKA (Diabetic ketoacidosis) is kicking in. If she vomits it starts a vicious cycle that is really hard to get out of and that is how she ended up at the Children's Hospital in ICU in a coma for 2 days! That was when she was 10 years old.
Thankfully her dad was taking care of her so I could get a little bit of sleep. As I slept about an hour and a half, I didn't know she went over 500. He had her change her site and come to find out some tiny little bubbles were in the tube. So she was going without insulin for just a few hours and her body was already in trouble.
I got up and took over so her dad could get some sleep. After her pump change at 3:57am she was down to 448. Of course I couldn't go back to sleep with her that high, so the two of us hung out in her bed watching Nick at Night. :-)
Tested again at 4:43am and she was down to 395, again at 5:21am she was 340, again at 5:58am she was finally down to 293. So at this point I felt okay to get some sleep. Shanie was so tired, she finally crashed out at that point too. I woke up at 9am and checked her again and she was back down to 143!
The bad thing about trying to get her number down, is that you want to keep pumping extra insulin to get her down faster. Her insulin pump is like an IV and slowly drips insulin into her body 24/7, so it takes time for it to get her number down. If we had put extra insulin to get her number down faster, she could have crashed or we would have still been up trying to correct lows. So we just had to wait and keep checking to make sure her insulin was going in.
You never know when nights like this will happen. Some friends of ours had a similar night as well and they were going to Disneyland today! So you just have to fight through the night and just keep going the next day! I'm not asking for a pat on the back, there are millions of us parents doing the same thing. We just need people to be aware that this disease fights our children 24 hours a day, 7 days a week. No matter if they are sleeping, awake or going to Disneyland! It is always fighting against our children so we in turn will always fight back no matter the time of day or night.
We had a fun spontaneous trip down to Bakes at 11pm because Shanie just had to have In N Out! SO since we ALL love In N Out it wasn't too hard to talk her dad into driving that far for their food. At 11:47pm Shanie's blood sugar was 252 when she tested before she ate. And we knew she put in enough insulin to cover her food.
At 2:32am she went to 497! At 2:50am she went even higher to 532!! At this point she was starting to feel sick. We know with her that when she gets that high and she starts to feel sick DKA (Diabetic ketoacidosis) is kicking in. If she vomits it starts a vicious cycle that is really hard to get out of and that is how she ended up at the Children's Hospital in ICU in a coma for 2 days! That was when she was 10 years old.
Thankfully her dad was taking care of her so I could get a little bit of sleep. As I slept about an hour and a half, I didn't know she went over 500. He had her change her site and come to find out some tiny little bubbles were in the tube. So she was going without insulin for just a few hours and her body was already in trouble.
I got up and took over so her dad could get some sleep. After her pump change at 3:57am she was down to 448. Of course I couldn't go back to sleep with her that high, so the two of us hung out in her bed watching Nick at Night. :-)
Tested again at 4:43am and she was down to 395, again at 5:21am she was 340, again at 5:58am she was finally down to 293. So at this point I felt okay to get some sleep. Shanie was so tired, she finally crashed out at that point too. I woke up at 9am and checked her again and she was back down to 143!
The bad thing about trying to get her number down, is that you want to keep pumping extra insulin to get her down faster. Her insulin pump is like an IV and slowly drips insulin into her body 24/7, so it takes time for it to get her number down. If we had put extra insulin to get her number down faster, she could have crashed or we would have still been up trying to correct lows. So we just had to wait and keep checking to make sure her insulin was going in.
You never know when nights like this will happen. Some friends of ours had a similar night as well and they were going to Disneyland today! So you just have to fight through the night and just keep going the next day! I'm not asking for a pat on the back, there are millions of us parents doing the same thing. We just need people to be aware that this disease fights our children 24 hours a day, 7 days a week. No matter if they are sleeping, awake or going to Disneyland! It is always fighting against our children so we in turn will always fight back no matter the time of day or night.
Wednesday, December 7, 2011
Cute Boys = Good Blood Sugar!
Okay, I'm sure you are all saying....WHAT? LOL!
Well we have found this to be true with Shanie. We have no idea if this is true for anyone else. When we told her doctors at UCLA they thought it was funny. But it is now a fact in her chart! :-)
We first noticed it when we went to Disneyworld in 2009. Her numbers, for the most part, were great. We started to notice that whenever she would see a cute boy for an extended amount of time, or see lots of cute boys, she would go low. We seriously started to watch this. Hey whatever works, right? LOL! We did find out that this is in fact true for Shanie.
We just got back from spending two days at two places that Shanie does not care for, Legoland and Seaworld. Mostly she doesn't like them because they are not her beloved Disneyland, LOL! What we did find out this time was that in fact it is cute boys that keep her blood sugar levels down.
Usually when we go someplace that she is not happy about she will stress out and stress causes her numbers to go high and then when her numbers are high, she is really crabby. She hates to feel this way too.
So as we spent the past two days at two places she doesn't care for, she did see a lot of cute boys and babies, another one of her weaknesses. :-) And for the past two days not only were her numbers good, she actually had a good time too! :-)
P.S. She keeps wanting to ask her doctors to recommend a cute boy to follow her around instead of a dog! LOL!
Well we have found this to be true with Shanie. We have no idea if this is true for anyone else. When we told her doctors at UCLA they thought it was funny. But it is now a fact in her chart! :-)
We first noticed it when we went to Disneyworld in 2009. Her numbers, for the most part, were great. We started to notice that whenever she would see a cute boy for an extended amount of time, or see lots of cute boys, she would go low. We seriously started to watch this. Hey whatever works, right? LOL! We did find out that this is in fact true for Shanie.
We just got back from spending two days at two places that Shanie does not care for, Legoland and Seaworld. Mostly she doesn't like them because they are not her beloved Disneyland, LOL! What we did find out this time was that in fact it is cute boys that keep her blood sugar levels down.
Usually when we go someplace that she is not happy about she will stress out and stress causes her numbers to go high and then when her numbers are high, she is really crabby. She hates to feel this way too.
So as we spent the past two days at two places she doesn't care for, she did see a lot of cute boys and babies, another one of her weaknesses. :-) And for the past two days not only were her numbers good, she actually had a good time too! :-)
P.S. She keeps wanting to ask her doctors to recommend a cute boy to follow her around instead of a dog! LOL!
Wednesday, November 30, 2011
Never Give Up!!
We have talked to many people about type 1 diabetes. Some have no idea what it is and others deal with it everyday. I cannot tell how different people can be about this one disease!
After 8 years I still get shocked by people's reactions. The ones that shock me the most are the ones that have accepted this disease as a way of life. I have had one mother tell me that basically why worry about a cure. It's already too late for our teenage daughters. WHAT???? Are you kidding me? But then I think that these people may like the attention of having this disease. We are not that way. We want this thing out of our lives forever!
We want Shanie to never have to think about her blood sugar or how many carbs she can eat! We never want her to lose sleep because she is correcting lows all night long. Or like last night we had to change her pump at 4:30am. We never want her to be irritable when her numbers are high (because she is such a sweet loving girl and that is not her, that is the disease). We never want her to be thirsty or have to go to the bathroom all the time because of highs. We don't want her to feel weak and shaky from lows and have to stop what she is doing until she brings her numbers up. We want her to be free from needles and tubes. She does her best not to let this disease slow her down, but sadly since we don't have the control, it has in fact stopped her in her tracks. No matter what you do, it can knock you down at any time! And because we know this is the reality of this disease WE WILL NEVER EVER GIVE UP HOPE FOR A CURE! That is the power we have over this disease! :-)
We know there will be a day when Shanie can say, "I used to have type 1 diabetes!!"
Now, on to people!
Dr. Faustman is now in the middle of a stage 1 clinical trial to test this technique in humans. Using special blood-testing equipment that’s taken years and millions of dollars to develop, her team is measuring whether the BCG vaccine is able to measurably reduce the number of defective t-cells.
For the past several years we have been supporting Dr. Faustman and her team. Here is some info on what she is working on.
In 2003, after over a decade of work, Dr. Faustman became the first person to cure diabetes in naturally diabetic mice. This was not a treatment, like injecting islet cells or transplanting a pancreas. Dr. Faustman’s mice had a genetic disorder that caused them to develop diabetes naturally. Once her mice reached old age (about a year in mice time), she treated them with a two-drug combination to kill the defective t-cells that were destroying their insulin producing function. The stunning result: the mice regrew their beta cells and began naturally producing insulin again! This experiment has been repeated and verified independently by a half dozen labs since. In the past, there have been many false alarms on the “mouse cure” front. Treatments have been sold as cures or a reported cure was unable to be repeated. This is the real deal. The mice had diabetes into their old age, and this treatment cured them. Other labs have verified the results.
Now, on to people!
Dr. Faustman is now in the middle of a stage 1 clinical trial to test this technique in humans. Using special blood-testing equipment that’s taken years and millions of dollars to develop, her team is measuring whether the BCG vaccine is able to measurably reduce the number of defective t-cells.
Support Dr. Faustman’s Research
These clinical trials are 100% self-funded. Because the BCG vaccine is not patented and can be used by anyone, the pharmaceutical companies will not fund these studies. It is up to us to ensure that this moves forward as quickly as possible.
These clinical trials are 100% self-funded. Because the BCG vaccine is not patented and can be used by anyone, the pharmaceutical companies will not fund these studies. It is up to us to ensure that this moves forward as quickly as possible.
Friday, November 25, 2011
Thanksgiving!
As we all know Thanksgiving is about spending time with family, watching football, and of course FOOD!
As most of us just pile our plates high with all of our favorite foods, and yes, go maybe go back for 2nds and sometimes even 3rds. LOL! And let's not forget about all the desserts! How many of you are keeping track of the carbs you are eating?? Probably none of you...unless you are a type 1 diabetic.
We had two Thanksgivings in two days. And with all the yummy foods and all the yummy desserts, Shanie still had to count how many carbs she ate. Actually she really had to "guess" since it is hard to find the exact carb count for everything. And she still had to test her blood sugar many times. More than normal due to her having to "guess", because she could guess wrong and either go high or low. She did go low both days. On one of the days she tested once in front of her little cousin, and then she of course had to test again later and her little cousin said, "You have to do that again?"
Then yesterday while eating with her great grandfather, which he is type 2, he kept saying that he was taking the day off from diabetes. With him being 89 years old, he will never fully understand what Shanie has to go through. And sadly for our baby girl and everyone else with type 1, they can NEVER EVER take a day off from type 1! The closest she gets to "taking a day off" would be that she doesn't have to keep her carbs under 250 grams and she can bolus more than 5 times if she wants. The funny thing about that is she still stayed under 250 grams and she didn't even bolus 5 times. :-) We try to give her as much freedom as we can on holidays, but she still has to keep fighting that monster!
As most of us just pile our plates high with all of our favorite foods, and yes, go maybe go back for 2nds and sometimes even 3rds. LOL! And let's not forget about all the desserts! How many of you are keeping track of the carbs you are eating?? Probably none of you...unless you are a type 1 diabetic.
We had two Thanksgivings in two days. And with all the yummy foods and all the yummy desserts, Shanie still had to count how many carbs she ate. Actually she really had to "guess" since it is hard to find the exact carb count for everything. And she still had to test her blood sugar many times. More than normal due to her having to "guess", because she could guess wrong and either go high or low. She did go low both days. On one of the days she tested once in front of her little cousin, and then she of course had to test again later and her little cousin said, "You have to do that again?"
Then yesterday while eating with her great grandfather, which he is type 2, he kept saying that he was taking the day off from diabetes. With him being 89 years old, he will never fully understand what Shanie has to go through. And sadly for our baby girl and everyone else with type 1, they can NEVER EVER take a day off from type 1! The closest she gets to "taking a day off" would be that she doesn't have to keep her carbs under 250 grams and she can bolus more than 5 times if she wants. The funny thing about that is she still stayed under 250 grams and she didn't even bolus 5 times. :-) We try to give her as much freedom as we can on holidays, but she still has to keep fighting that monster!
Monday, November 21, 2011
What's in a name????
Each year we do the Walk to Cure Diabetes. At these walks everyone has team names. We wanted a team name that was different and meant something to us. Shanie is a HUGE Tim Burton fan and so of course The Nightmare Before Christmas is one of her all time favorite movies.
I think it was at the age of 11, and with Shanie being the creative nut that she is, she drew a picture of Sally with her arm off and needles sticking in her arm. Those of you that have seen the movie will understand the arm being off. :-)
So we decided that this would be the picture to go on the back of her team shirts for the walks. She also drew a little girl with a "thinking" bubble above her head. So we put that on the front of her shirts. And now for the name......
I came up with Shanie's Dream Team. I figured the little girl on the front was dreaming of a cure. And the family and friends that join us each year to help us raise money are for sure the best! And with the best team, we have the famous "Dream Team". So this is who we feel help us with this fight. Shanie's Dream Team. Shanie came up with "The Nightmare Before The Cure". Again, huge Tim Burton fan. This was no surprise. But it all tied in together. She had the little girl on the front dreaming of a cure with her Dream Team helping her fight, and of course for those that live with this disease, it is for sure without a doubt a nightmare!
So Shanie's Dream Team was born! And right now Shanie is living the nightmare before the cure!
I think it was at the age of 11, and with Shanie being the creative nut that she is, she drew a picture of Sally with her arm off and needles sticking in her arm. Those of you that have seen the movie will understand the arm being off. :-)
So we decided that this would be the picture to go on the back of her team shirts for the walks. She also drew a little girl with a "thinking" bubble above her head. So we put that on the front of her shirts. And now for the name......
I came up with Shanie's Dream Team. I figured the little girl on the front was dreaming of a cure. And the family and friends that join us each year to help us raise money are for sure the best! And with the best team, we have the famous "Dream Team". So this is who we feel help us with this fight. Shanie's Dream Team. Shanie came up with "The Nightmare Before The Cure". Again, huge Tim Burton fan. This was no surprise. But it all tied in together. She had the little girl on the front dreaming of a cure with her Dream Team helping her fight, and of course for those that live with this disease, it is for sure without a doubt a nightmare!
So Shanie's Dream Team was born! And right now Shanie is living the nightmare before the cure!
Saturday, November 19, 2011
Happy Holidays with type 1 diabetes....NOT!
So it is that time of year again! Everyone's growing excitement for the holidays!
I know we are like all other families with planning holiday get togethers with family and decorating the house and shopping for Christmas! Everyone is so busy, rushing around, and we are no different. With the exception of one thing. During this time of year you have the festive Christmas music playing in all the stores, the Thanksgiving feasts everyone is preparing for, the travel arrangements you are making, the Christmas gifts you are buying, it is such a joyous time of year.
BUT as we have found the past 9 holiday seasons we have had one extra thing to worry about, Type 1 Diabetes. This disease never takes a break and sometimes with all the excitement it can be harder to fight. Shanie's blood sugar is determined by a number of things. Stress and excitement are just two of these things. So as you can imagine just like all other kids she gets very excited for the holidays. So this can make her blood sugar go all over.
So during all the hussle and bussle and excitement of the holiday festivities, we still have to make sure she is testing enough and she is still counting her carbs. I know everyone is focusing on the joys and excitement of the holidays, as are we, but sadly for our baby girl, type 1 diabetes does not take a break during the fun filled holidays. She still has to fight for her life everyday of the year, including Thanksgiving and Christmas.
I know we are like all other families with planning holiday get togethers with family and decorating the house and shopping for Christmas! Everyone is so busy, rushing around, and we are no different. With the exception of one thing. During this time of year you have the festive Christmas music playing in all the stores, the Thanksgiving feasts everyone is preparing for, the travel arrangements you are making, the Christmas gifts you are buying, it is such a joyous time of year.
BUT as we have found the past 9 holiday seasons we have had one extra thing to worry about, Type 1 Diabetes. This disease never takes a break and sometimes with all the excitement it can be harder to fight. Shanie's blood sugar is determined by a number of things. Stress and excitement are just two of these things. So as you can imagine just like all other kids she gets very excited for the holidays. So this can make her blood sugar go all over.
So during all the hussle and bussle and excitement of the holiday festivities, we still have to make sure she is testing enough and she is still counting her carbs. I know everyone is focusing on the joys and excitement of the holidays, as are we, but sadly for our baby girl, type 1 diabetes does not take a break during the fun filled holidays. She still has to fight for her life everyday of the year, including Thanksgiving and Christmas.
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