Wednesday, March 26, 2008

Mama's Got Skills ( and a meme)

Riley had his 3 month endo appointment on Friday. Everything went well. His endo was surprised that Riley can give his own insulin (with supervision). She said often children don't do that on their own until about 9.

She's never mentioned CGMs to us before and I've never asked about them. Mainly because I don't think we are ready for one. I really don't want another piece of hardware on my kid right now. Plus, there's the insurance issue. But, Dr. M is very excited about the launch of the Navigator. She said it's not anything to think about right now, but will be important in a couple of years when Riley's pump warranty expires.

His A1C 3 months ago was 7.3. It was 7.2 this time. I am extremely happy with that. I expected it to go up a little what with an ear infection and the flu. It's always a good thing when it goes down even a little bit. Riley's growing right on schedule. Of course, I could have told you he's growing. His jeans are starting to look more like capris.

It's been almost 2 years since Riley had a slew of blood work done. Dr. M decided it was time for it again. Since we live almost 3 hours from the endo she gives us the orders and we get it done somewhere local and fax it to her.

She ordered thyroid tests and cholesterol. She also ordered the dreaded celiac test. I don't know why but it makes me nervous to have that one done. Yes, I do know why. I don't want my child getting celiac's. He has enough on his plate already. He doesn't have any outward symptoms of celiac but I worry just the same.

I am a nurse. I was talking about bringing Riley into the health department for his blood work and how I hate it because there is always a long wait and he can't eat and I'm always afraid he's going to go low. A co-worker suggested that I do the blood work at home and bring it in myself.

Hmmmm. Stick my child with a needle? I can't do that. Oh wait. I do it all the time. Yet, somehow this seemed different. I called Riley and asked if he'd like me to do the blood work. He sounded very happy to have me do it.

He didn't go low last night and have to eat anything. So today was the day. I worried about it all night. To make matters worse this morning was also a site change morning. That meant double the needles.

I changed his site first. Then, he sat down on the couch and propped his little arm on a pillow.

"Will it hurt?"

"Well, it will probably sting a little."

"I don't like it when it stings."

Luckily Michael was home and was able to hold his arm. He whined a little and the tears welled up in his eyes but he never cried. He was such a brave little man. But, yet, my heart ached for him. Stupid disease that makes him have to check and make sure he doesn't have other diseases.

I sent the labs off today. I should have the results tomorrow.

After I finished drawing his blood I looked at Michael and said "It's good to have a mama with skills."

Even though it was hard for me to do I'm glad I could do it for him. I think it was probably less traumatic to have me do it at home than to have a stranger do it in the clinic.


Now, onto the meme. I was tagged by
Shannon and Kelly to do a six word meme.

Here are the rules:

Write your own six word memoir.

Post it on your blog and include a visual illustration if you’d like.

Link to the person that tagged you in your post, and to the original post if possible so we can track it as it travels across the blogosphere.

Tag at least five more blogs with links.

And don’t forget to leave a comment on the tagged blogs with an invitation to play.

Here it goes: Life has been good to me.

It's not as creative as others I've read, but it will have to do.

I'm a little late joining in so I'm not tagging anyone.

Tuesday, March 25, 2008

My Email

I am in the midst of changing email providers. So, I can no longer access my original email account. If you are trying to get up with me or if you have emailed me in the last couple of days please resend your email to


Wednesday, March 19, 2008

I Love Dr. Faustman

A few days ago I posted about the start of clinical trials for Dr. Faustman's research. I contacted the team yesterday and asked how this research will develop into a cure for my son since it is only being done on adults. Of course, they don't have an answer yet because it just depends on how the FDA approves it if it works. But, they did send me the press release that I wanted to share with you.

MGH Initiates Phase I Diabetes Trial

BOSTON, MA – Scientists at the Massachusetts General Hospital (MGH) have initiated a phase 1 clinical trial to reverse type 1 diabetes. The trial is exploring whether the promising results from the laboratory of Denise Faustman, MD, PhD, can be applied in human diabetes. Faustman’s previous studies have shown that mice with a form of diabetes that closely resembles type 1 diabetes in humans can be cured. In the animal studies, a commonly used vaccine that provides protection against tuberculosis, called Bacillus Calmette-Guerin (BCG) was used effectively to deplete the abnormal immune cells that attack and destroy the insulin producing cells of the pancreas. The first step in the human study, which is currently enrolling volunteers, is to determine whether the same strategy using BCG vaccination can be used to modify the abnormal autoimmune cells that are present in type 1 diabetes, sometimes called “juvenile-onset” diabetes.

“We are pleased to be starting human clinical trials,” said Faustman. “Human trials take time, but we are making the step from curing diabetes in mice to determining whether it will work in men and women with diabetes.”

Type 1 diabetes usually starts during childhood or adolescence and can cause a variety of severe complications including kidney failure, loss of vision, amputations, heart disease, and strokes. It occurs when a person’s immune system attacks and destroys the insulin-producing cells in the pancreas. In the absence of insulin, which is necessary for sugar and other nutrients to enter cells, blood sugar levels rise. The risk for developing complications is closely linked to the elevated blood sugar levels over time. If blood sugar levels are well controlled, the long-term complications can largely be avoided. However, the so-called intensive therapy that is required to maintain near-normal sugar levels requires life-long demands on the patient, including frequent blood sugar monitoring and at least 3 daily injections of insulin or use of an insulin pump, along with restrictive diets. Insulin doses must be adjusted based on blood sugar levels, dietary factors, and anticipated exercise. A cure for diabetes has been highly sought after and has attracted much research interest.

The clinical trial is using the BCG vaccine for several reasons. BCG has been used safely for nearly 80 years as a tuberculosis vaccine. It is now being used in the human trial because it causes a low-grade inflammatory reaction, which in the mouse model of autoimmune diabetes lead to the destruction of the abnormal autoimmune cells.

David M. Nathan, MD, director of the MGH Diabetes Center, who is leading the human study at MGH, provides context: “This is the very first step in what is likely to be a long process in achieving a cure. We first need to determine whether the abnormal autoimmune cells that underlie type 1 diabetes can be knocked out with BCG vaccination, as occurred in the mouse studies.”

The Phase I trial is being supported largely through direct and fundraising support from the Iacocca Foundation, and through support from other donors and the Massachusetts General Hospital. The Iacocca Foundation was founded by Lee Iacocca and his family in 1984 to fund innovative approaches to a potential cure for diabetes. Trial information is available to the public at

About the Iacocca Foundation
The Iacocca Foundation has been a leader in the battle against diabetes for over 20 years. The foundation has granted more than $27 million to innovative and promising research designed to lead to a cure for diabetes and alleviate its complications. The Foundation was established by Lee Iacocca after his wife, Mary, died from complications of type 1 diabetes.

About the Massachusetts General Hospital
Founded in 1811, the MGH is the third oldest general hospital in the United States and the oldest and largest in New England. The 900-bed medical center offers sophisticated diagnostic and therapeutic care in virtually every specialty and subspecialty of medicine and surgery. Each year the MGH admits more than 46,000 inpatients and handles nearly 1.5 million outpatient visits at its main campus and health centers. Its Emergency Department records nearly 80,000 visits annually. The surgical staff performs more than 35,000 operations and the MGH Vincent Obstetrics Service delivers more than 3,500 babies each year. The MGH conducts the largest hospital-based research program in the country, with an annual research budget of approximately $500 million. It is the oldest and largest teaching hospital of Harvard Medical School, where nearly all MGH staff physicians serve on the faculty. The MGH is consistently ranked among the nation’s top hospitals by US News and World Report.

There is also an article in Newsweek about Dr. Faustman and her trials.

I know that this might not pan out. But, I'm so excited that Dr. Faustman is getting a chance to see if it does.

Tuesday, March 18, 2008

Some Things

  • Michael and I enjoyed our time away in Virginia Beach. We went to The Funny Bone and enjoyed the comedy of Bill Dwyer. But, the comedian before him, Dan Davidson, was much funnier. He made me laugh so hard I cried. It was nice to cry from laughing for a change.

  • We stayed at The Wyndham. We had a balcony over-looking the ocean. It was beautiful. I took pictures but haven't downloaded them to my computer yet. So, we'll pretend this is the picture I took.

    • Riley ran high all night long the night we were gone as well as most of the rest of the next day. Once we returned home his sugars evened out a bit. Maybe he's allergic to being away from me?

      • Holden keeps reminding me that next year is his senior year of high school. He gets a kick out of watching my eyes tear up.
      • We are going this week to rent his tux for the prom. There will be more tearing up at that time.
      • Riley has started up with soccer. He is loving it. He has the best coach in the world, Michael.

      • I have been having some minor health issues. It's nothing life threatening, just something that was causing quite a bit of pain. The treatment involves a medicine that has some side effects. I've been having terrible headaches as well hot flashes. My original pain has been replaced by head pain and a red face. I'm not sure it's the lesser of two evils.

      • They gave me medicine for the headaches that knock me on my butt. I can't really take it because I don't have time to be on my butt for very long.

      • Riley started using a new machine this week. I love, love, love it. It is the Freestyle Lite. We were using the Freestyle Flash, but got the Lite for free. It's a new and improved version of the Flash which I loved, loved, loved also.

      • Riley has started checking pretty much all of his sugars himself. Before he tested himself at school but when he was at home Michael and I did the testing.

      • He comes to tell me what his sugar is after he tests. He is now able to tell me if it's low or if it's high. Yet when I said to Michael the other day that his sugar was one hundred and seventeen Riley said, "No, it's not. It's one one seven."

      • Riley is also dosing himself most of the time when he is at home. He wants to. If I do it without thinking he'll get upset and say that he wanted to do it. He only does it with supervision of course.

      • Both of my boys are growing up.

      Friday, March 14, 2008

      It's Here !!!!!!!

      When Riley was first diagnosed with Type 1 diabetes I was in shock. I wasn't thinking about a cure. I was thinking about how we were going to get through it.

      Fast forward a few days: I began to frantically search the internet for all sorts of information. One thing I searched for was how close we were to a cure.

      Not very close, it turns out.

      But, the one research project that really stuck out for me was the
      one being done by Dr. Denise Faustman. From the moment I read about what she had done I had hope, a hope I hadn't had before. Her project made sense.

      Once I read about it I started researching how to support it. That is how I found
      The Iacocca Foundation. Dr. Faustman's project is one of the main reasons why I decided to hold a walk to support Mr. Iacocca in what he is trying to do, find a cure for Type 1 diabetes. There are other reasons why I chose to support his foundation but Dr. Faustman's project was really the catalyst for my walk. I remember at my first walk thinking that it would be forever before human clinical trials started. That day seemed eons away.

      Well, my friends,
      that day has arrived. I can't even put into words how excited I am. I know there are some nay sayers out there that want to tell me not to get my hopes up. Some say a cure is impossible.

      It's too late. My hopes have been up ever since I first learned of Dr. Faustman's research. And today my hope is soaring.

      Who knows, maybe it won't pan out. But, maybe it will.
      Maybe it will.

      "Hope sees the invisible, feels the intangible, and achieves the impossible."

      Tuesday, March 11, 2008

      8 Years

      We've been married eight years today.

      Eight years ago we could have never guessed what we had in store.

      Michael, we've weathered some pretty serious storms together. We've had the death of my grandmother. We've had several trips to the emergency room with our kids. A scare early on in my pregnancy. Some health issues, a few surgeries. Then there's October 6, 2005. Hopefully that is the toughest thing we will ever have to face.

      But, if it's not. I know we'll be OK.

      Rain or shine we'll make it together.

      It's not that hard to find someone with which to share the warmth of the sun. There is nothing like sitting and holding some one's hand while you feel the warm glow of the sun on your face, when everything seems right with the world.

      It is much harder to find someone to hold your hand in the stormy times. When the rain starts coming down most people run for shelter. With diabetes you never know when it's going to start to pour.

      Whenever the rain starts to pour down I look around to see you standing right next to me. Sometimes you shelter me like an umbrella while you get drenched. Other times we're both standing there cold, wet, and exhausted.

      Any one's life is going to have some rain. How you handle it makes all the difference. We've cried in the rain. We've laughed in the rain. Sometimes we've danced in the rain because we didn't know what else to do.

      Michael, thank you for dancing in the rain with me. I wouldn't have wanted to share this journey with anyone else.

      Friday, March 07, 2008

      The Fort Strikes Again

      Yesterday I told you of Riley's scratches and lows stemming from building a fort with his brother. It seems the fort has something against my kids.

      I was sitting at my office. My phone rang at 4:50 PM. Holden asked, "Are you getting ready to leave?"

      "In about 10 minutes. Why?"

      "Um, can you just stop by Grandma's on the way home?"

      "OK. But, it will be a few minutes."

      "Well, just hurry up if you can."

      I didn't think anything of it. I figured since they are building the fort behind my mom's house that they had finished and wanted me to stop by and look at it.

      I pulled up in my mom's driveway and Holden came out the door. He had blood all over his shirt and his jeans. He pulled up his shirt sleeve to reveal a very thick bandage that was soaked through with blood.

      He said that he and Riley were in the woods at the fort. They had packed a cooler with juice and also brought Riley's machine. My mom was back there with them too.

      Riley had to use the restroom so my mom took him back to the house, leaving Holden there alone. He's 17. You'd think he'd be OK for a few minutes by himself, but not my child.

      He proceeded to try and push down a tree. The same tree that my mom had told him to leave alone because it was too big to be messing with it. But, being that he's 17, the exact age where you know everything, he started pushing on the tree anyway.

      As he's pushing, all of a sudden he feels a large object land on his arm. The top 4 feet of the tree had broken off and fallen on him. He said his first thought was that he had broken his arm. He grabbed his arm and looked down. And that is when he saw the blood.

      He said he just started running back to the house. As he entered the house Riley came around the corner and saw the blood dripping onto the floor and started yelling for my mom.

      She said that his arm was covered in blood and it was dripping all over the floor. As she started cleaning it up she realized that it was a hole not a scrape.

      As soon as I got home I removed the bandage. Holden's arm had a very deep hole in it. It looked like someone had stabbed him with an ice pick. We're guessing that a tree limb stabbed him in the arm. It seems it was none too happy that he was trying to push it down.

      Puncture wounds are very prone to infection. So now I'm worried. And I will be gone all weekend. Holden has promised he will keep a close check on it and also keep a check on his temperature.

      Ah, the fun of parenting boys.

      Thursday, March 06, 2008

      It's the (Seemingly) Little Things

      A lot of times with life it's not the big events or the times in your life that get the most attention that have the most significance. A lot of times it's the seemingly insignificant things, a touch on the cheek, an email from a long lost friend, or sometimes it's the harsh words of someone that seem to make a difference and somehow shape our lives.

      The big things get the most attention but a lot of times it's the little things that really add up and shape us into the person we become.

      Diabetes is like that too. People hear that my son has had diabetes since he was 3 and the first thing they think of is the "big" things like all the shots he's had to take, being hooked to a pump 24/7, or sticking his finger several times a day.

      In the grand scheme of things the things that people deem as a big deal aren't really that big of a deal at all. It's not the site changes and finger pokes that get to me. It's the little things.

      It's the little things like the two cuts on the back of Riley's leg. He got them from a brier in the woods. He and Holden are building a fort and while Holden was carrying him out of the woods he snagged his leg on a brier.

      What's the big deal about a couple of cuts? Well, since Riley has diabetes he's much more likely for those cuts to get infected. It will take longer for those cuts to heal. If those cuts do get infected it will affect his sugars which in turn will make the healing process even longer.

      And did I mention why Riley was being carried out of the woods by his brother? They were having a wonderful time building a fort when all of a sudden Riley said he felt low. Being that they are kids they didn't take his machine with them or a box of juice. They weren't very far in the woods, but Riley felt so bad that Holden carried him out of the woods.

      His sugar was 49. A random event maybe. No. The day before Riley and Holden were out working on the fort. I called and told them to come home. (The fort is behind my mom's house.) When they got home I checked Riley and his sugar was 45. It seems fort building takes a lot out of him.

      So from now on they have been instructed to take his machine and a juice box when they work on the fort. My five year old should be able to build a fort or play outside without a sugar machine and juice box at this side.

      It's the (seemingly) little things.

      My wedding anniversary is coming up on Tuesday. Michael and I will be going away this weekend. We have not gone off anywhere without Riley since he was diagnosed. I've always been too afraid of what could happen. What if he gets sick? What if he has a bad site? It's the what ifs that have kept me home.

      I finally decided that it's time to let go a little. We will be going to Virginia Beach. That's not really all that far from where we live. But, it's not right down the road either. I should be able to go away with my husband without a fear of something bad happening to my child.

      It's not just a fear. There is also guilt involved. Riley will be staying with my mom. My mom keeps Riley while I'm working so she knows what to do. But, I know how tedious the day in and day out care can be. She normally has him for a few hours. She will have him for almost 2 whole days. She will have to get up a few times during the night to check sugars. I feel guilty that I'm putting the care on her.

      Not only that, but I feel guilty because I can't wait to get away. I need to get away. But, Riley can't get away from it. Ever.

      It's the (seemingly) little things.

      It's things like the fact that my son cannot tie his shoes. We haven't taught him how to do that yet. But, he can add carbs. He can look at a nutrition label and tell you how many carbs are in what he is eating.

      It's things like when he visited me at work yesterday. He was at my office for about an hour. During that hour he found a piece of candy on my desk that he wanted but knew he couldn't have. He asked to have a sip of my drink. But he couldn't because it was regular soda (I don't normally drink soda, but it was given to me for free and I needed the caffeine.)

      He picked up a large candy jar we have at work and toted it over to a co-workers desk. Then he proceeded to tell her that he could only have something like that if he was low. Then he turned the jar over and told her how many carbs were in the candy.

      Next he asked what he was having for lunch at school the next day. When I told him he was having chicken tenders (which also come with mac and cheese and a dessert) he said, "Oh, that means I'll be drinking water with it because that meal has too many carbs in it for me to drink milk with it."

      I should be glad that he knows the information. But, instead I'm sad that he needs to know that information. His brain should not be filled with carbs and insulin doses. It should be filled with Star Wars and soccer. It should be filled with what he and his brother will do at the fort tomorrow. Not how he will manage to carry his toys out there along with his juice box and machine.

      It's the (seemingly) little things that pop up in day to day living that really takes it's toll. It's the (seemingly) little things that cut just a little at a time, but eventually they add up and leave a huge gash.

      I know that gash will heal. But, I also know that gash will leave a scar. I know that those same things are affecting my child. Maybe not so much now, but more in the future.

      It's the (seemingly) little things that mark us.

      Monday, March 03, 2008

      No More Flu and Yay for the Pump

      Thank you all for your kind comments and well-wishes.

      Riley has been temperature-free since Friday at about 10:00 AM. Friday actually turned out to be his worst day. He ran high all night long Thursday night/early Friday morning. He didn't come down to an acceptable level until about 3:00 Friday afternoon. He also had small ketones Friday until about 1 PM or so.

      I had taken off work Wednesday to stay home with him. Michael took off work on Thursday. It's really hard to take off more than one day of work in a week. My mom went out of town on Friday. So, big brother Holden stepped up to the plate.

      Of course I had to twist his arm to get him to stay home from school (not). He did a wonderful job with Riley. I went over my check list with him before I left for work. I told him that it was very important that Riley drink plenty of fluids to flush out the ketones. I also told him how often to check ketones.

      He said he wouldn't know when Riley was going to the bathroom so he locked the bathroom door so Riley couldn't get in without asking. That way he never missed an opportunity to check for ketones. I would have never thought of that myself.

      When I called to check on them one time I mentioned that Riley really needed to drink a lot since he had ketones. Holden said he had 2 glasses of Crystal Light in Riley's room. He had Riley drinking out of both of them and when they were empty Riley would let Holden know and he would refill them. Riley drank almost 2 quarts of fluid by the time I had gotten home.

      I got off work as early as I could (3 PM). When I walked in the door there was a fort set up in the living room and Holden and Riley were playing in it. Holden said Riley was perfect all day and they didn't get in one fight. (That's pretty rare on both accounts.)

      So, Riley is at school today. And he took the last of his icky Tamiflu last night.

      And today is his 2 year anniversary of pumping. I was so scared 2 years ago. But now, I can't even begin to describe how much I love the pump. Temporary basals have been our best friend as of late.

      I am so glad that Riley was able to get the pump so early in his diagnosis. It has been hard but I really think it would have been harder if we didn't have the pump. We used to have to make him eat a certain amount and we couldn't dose sometimes when he was high because we couldn't give him a small enough dose. I remember taking food away from him when he was eating because we were trying to keep him at 25g of carbs. Now he eats what he wants and we bolus for it.

      Yay for the pump!!