Milky Way for dinner?

Ever have one of those days that you don't want to fix a  healthy meal? It would be so easy to say screw it and eat whatever you want; but then reality sets in and you realize that you can't----you have to set a good example for your T1 son so that when he goes off to college; he won't resort to fast food, pizza or some other type of food because it is quick and convenient when you've had a long, hard day.

Don't get me wrong, we eat pizza and fast food; but it is planned and not part of our T1 lifestyle. Gone are the days when we can zip through Wendy's or Burger King for a 'quick' meal. Our typical meal is now 2-3 carbs, 1-protein and 2-veggies, 1-fruit and 1-2 dairy. Fast food meals usually consist of 1-protein and 4-5 carbs which makes it truly an unbalanced meal and not the norm I want for my pre-college son.

It is my hope that by showing him how to eat a healthy diet most of the time; he can endulge in the weekly (weekend) food choices that we normally wouldn't eat.
That's the plan.............you know what they say tho....."the best laid plans...."

The flu shot

When fall approaches, the flu shot advertisement hits the air waves. And, if you are a T1 diabetetic, it is strongly suggested you get one. Well, he's been getting one every year for the past 3 years and this year was no different. But, this year, he had a reaction to it. It started with being tired and not being able to hop out of bed after sleeping all night, it then progressed to a wee bit of grouchiness and wanting to take a nap after school. Then on the third day, he went from numbers just a bit out of range, to numbers we haven't seen since he was diagnosed with type 1 almost 3 years ago! Wednesday night, he tested before bed and was 200--I was actually excited because with that high of number, I could sleep through the night without having to test him at 3am. At 6am, he went up 76 points. Ouch! I kept thinking no big, he can take correction with breakfast and with PE; he'll be back in range before lunch! Wishful thinking.  Nearly one hour after I got to work, Tyler called me. He never calls me....He told me his  blood sugar was now at 357 and he was having symptoms of hypoglycemia even though he was hyperglycemic. He told me his heart felt like it was beating out of his chest and that his pulse rate was 110. He was scared, he's never had so many symptoms at one time.  I work as a substitute teacher and it is so hard to find someone to cover for you when you are the sub and while I dreaded having to leave; my son's needs come first. I initially told him to try and wait until  noon; but after talking to him and thinking about all of his symptoms; I thought better of it; despite putting my colleagues in a bind, I told them I was leaving to pick up my son. Once we got home, his BS had increased to 430 in relative short amount of time. He tested for ketones and no surprise was between moderate-large. Not good. I was having him drink 2-8oz of water on the hour every hour; he was taking correction and we were following the 'tree.' Still no changes and his blood sugars kept climbing. Now, I was starting to worry. He was drinking tons of water, iced tea, crystal lite and even though he was urinating, the ketone level was not changing.  I didn't want to have to make the 2 hour trip to Riley's, but neither did I want kidney damage or other complications such as DKA, coma or death. He needed IV fluids and an aggressive amount of insulin. This would be our second trip to Riley's in less than a week. Because Tyler didn't have the flu or flu like symptoms, it was decided he could have had a reaction to the flu shot. Of course, they couldn't rule out a viral illness either even though he didn't have the traditional flu symptoms.  We did learn that when blood sugars are as high as Tyler  had, that he will experience both hypoglyecmic symptoms as well as hyperglycemic symptoms--it's a double whammy and awful for the child! We have managed this disease for three years and have never experienced anything quite like that and I hope never to do so again!! As of today (Sat), his kidneys are functioning fine, he has zero ketones and his blood sugars are back within his range. We are looking forward to a nice quiet weekend!

Another good check-up @ Riley's Childrens Hospital

Tired today! Headed out on Thursday to the Covered Bridge Festival to hit up some flea markets to find some Pixie-Ware before going to Tyler's 4 month T1 check at Riley's.  I had no luck in finding Pixie-Ware but Tyler had a great visit/exam for his 4 month check up. He grew an inch and did not gain any weight!! His A1c was up a bit; but that's ok, he is still under 7.4! His doctor, Dr. Nabhan praised Tyler for a super job. Apparently, she uses Tyler as an example to all of her other T1 & T2 patients because Tyler has had such fantastic control! When I think back to where we started at 11.8 now down to 7.4 from three years ago, he really has done a fantastic job. Three years ago, we became a team and I think that is our success to his great control. His doctor told us about some of her patients (no names of course--don't want to violate HIPPA) who has had T1 as long as Tyler and their HbA1c is still as high as when they were first diagnosed. That was really disappointing to hear; because parental involvement is key to guiding and facilitating the child in helping them be more self-independent later in life by taking responsibility and control of their T1.  Dr. Nabhan also felt confident that a CURE is definitely within the next TEN YEARS! Woo-hoo! That would be fantastic!! Dr. Nahban is head of the Diabetes research division for Indiana University and if anyone would know about a cure; it would be her. Now, for the sad news.....Tyler will be turning 16 next year,  he no longer is considered a "pediatric" patient and will have to transition to an Adolescent Endocrinologist at Riley's. So, the wonderful team that we have had for the last 3 years will be over as of next May 2012. Of course, I am super disappointed because I absolutely ADORE our Endo team, but I am confident that our new Endo team will be just as great plus they'll be able to address any adolescent issues should something arise. I wonder if they can do anything about teenager attitude?? LOL!

T1 and school districts

After reading several friends posts about their horrific experience with their school districts care of their children with T1; I felt like stating a positive message about really good school systems that do care. After Tyler's diagnosis, I went to my son's middle school to let them know about the diagnosis and what he would need prior to returning to school. I met with the school nurse, Principal and school psychologist ready to do battle if need be; but it was not needed. My son's school was very cooperative and told me that whatever he needs, they will provide.  The school sent the nurse to several diabetes training courses that she requested and has continued to take continuing education classes related to T1.  All school staff was very supportive and it felt so good to know that while Tyler was in school; I knew he would be safe with teachers and staff that could handle an emergency if need be. I guess we are extremely fortunate because some of the really horrific stories include teachers thinking students insulin pumps were pagers and yanked them off not realizing the damage to the students body or insulin pump that they had just caused. I know there are some parents whose school districts are so bad that they have had to pull their kids out of school to homeschool them. It shouldn't have to be like that.  All kids deserve a safe place to be educated regardless if they have T1 or not. My heart goes out to those parents who do not have a supportive school district and have to deal with educators and administrators that would rather do nothing than try to help and make a plan. I'm thinking those people are in the wrong business! Anyway, I'll get off my soapbox. Thank you Heritage School District, C.U.S.D #8 for being a wonderful, caring and supportive school district for Tyler!

The day has almost arrived!

Dear family and friends,
I am so excited to share with you that my dream of a partnership with JDRF and Carle Hospital has almost come to fruition! Nearly two years ago to the day, I contacted Carle Hospital and JDRF to ask about establishing a partnership between these two organizations to provide educational resources about kids with type 1 diabetes in the C-U area. I chose to work with JDRF because of their great reputation and for the fact that their mission is finding a cure for type 1 diabetes.  I chose Carle Hopsital because it's a great organization and has an established Pediatrics Department.

As I reflect back upon the two years, it has been slow going and at times frustrating, because I wanted a parent-volunteer network up and running and established now; but I knew in order for this to work; both organizations had to be on board. Perseverance wins the race. I never gave up that someday a partnership and local connection could be established and that someday is here.  On Monday, Oct. 3rd, I am meeting with both Carle and JDRF to get the ball rolling to establish a parent-volunteer network between JDRF and Carle so that together we can serve families with type 1 diabetes in the Champaign-Urbana and surrounding areas!

Happy Anniversary to Tyler!

Three years ago today was one of the most frightening experiences of motherhood. The summer before diagnosis, Tyler hit puberty. He lost a ton of weight, grew a couple of inches and started the transition to teenager. Looking back, he had all the classic symptoms of Diabetes. Weight loss, drinking lots of fluids (1 gallon of milk in a day and a half and liters full of water), constantly eating, urinating a lot and grumpy. He was also sleeping alot, but it never even dawned on me that there was a problem. Tyler has a step brother, Jim and I asked Jim what he looked like and experienced when he hit puberty---and it all sounded normal when compared to Tyler. Even Tyler's Dad said he was skinny as a bean pole when he hit puberty.  It wasn't until school started that I started thinking something was wrong, he complained of belly pain after eating, he seemed awfully tired after getting home from school. It was getting harder to get him up in the morning, too. About a week before he was diagnosed, one of his teachers noticed that the normal active Tyler wasn't behaving like he usually did. She noticed how tired he was after climbing 3 flights of stairs, and how he wasn't his usual bubbly self. She told the school nurse that she was concerned and that phone call to me had me calling Tyler's doctor for an appointment.  If it weren't for Pam Tighe and Lynn Rosene--two teachers at Tyler's school; Tyler would not be with us today. As it turns out, Tyler never made it to his doctor's appointment scheduled for the very next week. Two days after the phone call, on September 18, 2008; I couldn't get him to wake up and stay awake for school. I called my parents and they came up to stay with him while I went to work. A colleague overheard me talking about Tyler's odd behavior and she told me that her son had Type 1 Diabetes and I needed to take him to the doctor right now. I drove 30 miles back home and took him to our primary physician. They took his blood sugar and his blood sugar didn't even register. Later, we found out that it was a little over 1,000. He was rushed to the Emergency Room where we received his diagnosis of Type 1 Diabetes. He was so sick that he was close to being in a diabetic coma. Three days in the ICU before being transferred to the Pediatric floor to learn what our child would have to endure for the rest of his life until a cure for diabetes was found.  Three years later, as I reflect back on those days in the hospital, I am amazed at how far he has come. Really, how far we all have come as a team. We are in it together and now seeing his A1c is 6.8 from 11.8----we are blessed and there is not a day that goes by that I don't thank God for the opportunity he gave us. I have been advocating, mentoring and fundraising to find a cure for diabetes for three years. This year, on Oct. 2nd, 2011, Tyler has raised over $1,000.00 for his Step Out Walk. His goal was $500 and he doubled it. I'm very proud of him and hope that he continues on this journey to help fund raise to find a cure for Diabetes. As his journey continues, mine has just begun. I was diagnosed with type 2 diabetes a few weeks ago. Upon hearing the diagnosis, Tyler said "Welcome aboard the diabetes train Mom!" Acceptance, understanding and faith in a cure....I have an AMAZING son!

Back to school.....

Hooray, hooray!
School is back in session! Well, at least for one hour today! Diabetes teaching today as well to all staff at the high school. I hope all the teachers watched the ADA glucagon injection training video, it was given to the Principal nearly a week before to distribute to the teachers. It will make training so much easier if they know how to give an injection!! We shall see.....