Monday, December 29, 2008

Life Is Strange


Life can be so very strange.

We’ve had a great Christmas, but as is the normal for our winter months, it also involved Nikki being sick. Along with having type 1 diabetes, Nikki has an almost non-existent immune system and is sick a great deal in the winter months. Though the constant illnesses are not caused by diabetes, they are complicated by diabetes. She spent the overnight hours on Christmas Eve throwing up every hour; that ceased around 4:30 a.m. Christmas morning. She was feeling well enough to open her presents and gradually felt better as the day went on. Like always, she kept on keeping on.

We left for Gatlinburg, Tennessee on the 27th with our church youth group. We took around 60 or so teenagers for a weekend of Christian concerts and amazing speakers. Nikki wasn’t able to get all the way through the first night, but after having the stomach flu a couple of days before, she was simply worn out. She woke up Sunday morning refreshed and ready to go. We were blessed with a weekend of praising the Lord, great friends and wonderful memories. Thankfully, Nikki is feeling pretty great.

When I got home today, I checked my facebook account and found out that a friend from my school days received some bad news this morning. Her name is Nicole and her blog “All 4 of My Gals” is linked through mine at the very bottom of the page. One of Nicole’s lovely daughter’s has Downe Syndrome and I have found her story, her faith and her energy to be very helpful to my own journey. This morning another of Nicole’s daughters’ was diagnosed with type 1 diabetes. Nicole and I hadn’t seen or spoke to each other for almost 25 years, until we both joined Facebook (along with about 70 or so classmates at about the same time). How strange and wonderful it is that God would bring so many of us together at a time in our lives when we can really draw strength from the trials and journeys we have each faced and taken.

Like I said, life can be strange; but once again God has shown me just how great he is and how much he cares about every second of every day for every one of us. Please join me in praying for Nicole and her daughter Emery; the coming days, weeks and years will be tough (as we all know).

Tuesday, December 23, 2008

Insulin Manipulation - Diabulimia

I wrote a brief article a while back for a class at Western Kentucky and I wanted to share the information. It is something that families need to be aware of.

Think back to when your child was first diagnosed. He or she was probably suffering from ketoacidosas which produced weight loss along with other problems. Some teens intentionally induce ketoacidosas by withholding or drastically reducing their insulin therapy in order to lose weight.

Diabetic children and teens have to grow up much earlier than most of their peers. They face a life and death struggle on a daily basis. The fact that type 1 diabetics spend such a large part of their day worrying about what they are eating, carb counts, sugar content, exercise and the overall underlying stress that comes with this disease makes type 1 children and teens more likely to become victims of anorexia or bulimia.

One study, conducted at the University of Toronto and the Hospital for Sick Children, showed that eating disorders are twice as likely to occur in teenage girls with type 1 diabetes versus girls who do not suffer from the disease (Manazella, 2007).

Parents, caregivers and friends need to be aware that cutting back on insulin will cause a diabetic to lose weight. This seems like a fast way to drop a few pounds; however the long term affects are devastating. The most common damage is done to the eyes; a condition known as diabetic retinopathy which is damage to the blood vessels in the eyes (Barrett, 2006).

WARNING SIGNS

• Poor blood sugar control, extremely high readings consistently.

• Consistent hyperglycemia: excessive thirst, frequent urination.

• Obsessed or preoccupied with appearance (weight)& food intake.

• Moodiness and constantly criticizing oneself.

WHAT CAN YOU DO?

Among the many and complex feeling that parents and families of diabetics endure is the feeling of helplessness in the face of this disease. Having a diabetic child who is now battling an eating disorder can seem insurmountable; but there are things you can do. (Manzella, 2007)

• Be aware that this disease exists and can become a problem very rapidly.

• If you suspect an eating disorder contact your doctor immediately.

• Seek professional help. Your diabetes caregiver will be able to direct you to the right people.

• Talk to your teen. Communication is your first, best weapon.


Teaching people with type 1 diabetes to develop a healthy relationship with food and insulin at an early age can help prevent them from practicing harmful behaviors such as insulin omission and restriction later on. . . Kids and families need to learn that food isn’t toxic. New England Journal of Medicine

Thursday, December 18, 2008

Diabetes Humor


A small collection of humor from parents of diabetic kids, and yes some of them are mine.

YOU KNOW YOU'RE THE PARENT OF A DIABETIC WHEN.....

In conversation, your husband describes his personality as Type 1 instead of Type A.

You ask your child how her day at school was, and she answers with a number.

The microwave beeps and your d-child shouts “that wasn’t me!”

Everyone in the family says they are "low" instead of hungry!

When your parents answer the phone, the first thing they say is "What's wrong?"

You have no problem asking your child if they are "high" in a middle of a public place.

You make sure your child has candy in bed with them

You ask your child what they had for lunch and they reply 45 carbs!

Your daughter wakes you up in the middle of the night and says, "Mommy, I'm beeping."

Your child says "I'm tired" and you ALWAYS have to wonder if he's low, high, or just plain tired.

You travel with as much food as you do baggage!

You hear another parent wish that kids would come with instructions and your diabetic child pipes in and says, "I do, and I don't leave home with out them."

Your first grader calls you from school to tell you that his teachers, nurse, and health aide are all absent so you decide to go to first grade for the day.

Your child refers to sequel movies as "Type 2".

You automatically wake up at 2:00 a.m.

Every meal turns into a math equation.

Your child falls and before you ask if they're okay you ask, "How's your pump site?"

You base your entire self-worth on your kid's last A1C!

You know what glucagon is and what it does.

You wake up the entire house because you accidentally finger poke your daughter's best friend for the middle of the night check - they look way too much alike.

Your daughter has a sleep over and her friends line up for blood sugar check, and none of them have diabetes.

Your daughter begins to miss the school nurse over summer break.

Your child refers to having a cold as being 'real people sick'.

You laugh out loud reading this list.

Monday, December 15, 2008

Diabetes Camps



I mentioned in a post a couple of months ago that Nikki met and talked with Kris Freemen this past summer at Camp Korelitz (Camp Korelitz is a camp where all the counselors and campers have diabetes). Kris is a former and current member of the United States Cross Country Ski Team and will be competing again in the next Winter Olympics. Kris is also a type 1 diabetic and uses an insulin pump.

At the end of August of this year he spoke at the Democratic National Convention about the need for the government continuing to fund research and trials that will eventually result in a cure. I wanted share a portion of the speech he gave:

Over the years I have worked with Lilly {pharmaceutical company} to spread this message at camps for kids with diabetes around the country, and to raise awareness for the disease. The camps I have gone to are amazing. It is easy to feel isolated and alone with diabetes. Many schools around the country are not equipped to properly care for their diabetic students, which only exacerbates these feelings of isolation for the children. Some schools outright discriminate against these students by not allowing for glucose testing and other essential treatments while studying. This has led to placing diabetic children in remedial classes despite having no intellectual or learning disabilities. The last thing any child wants is something that makes them feel like an outsider. By coming together at camp, children with diabetes get a sense of unity that gives them strength. This harmony is contagious and has consumed me as well. The kids feed off the familiarity of the challenges and hardships that they face in their daily lives and leave camp with a newfound determination to live life to the fullest.

I’ve seen firsthand the positive impact that diabetes camp can have on the self esteem of a child. Camp also helps form friendships that will forever hold a special place in the campers’ heart. In fact, a couple of the people on my Facebook list are former camp counselors and fellow diabetics of my Nikki.

Though it seems way early to be thinking about summer camps; I encourage you to seek one out early in winter if your child does not already have a camp to attend. It is a week each year that will make a priceless change in the life of your d-child; and yes, you (the parent) will hate every second of them being gone for a very long week – but that is a small and insignificant price to pay for the positive impact it will have on the life of your precious child.

Sunday, December 14, 2008

This-n-That-n-This


It feels so strange to have all this extra time. With finals behind me, I feel like I have more time than I know what to do with. Bryan is heading out to Puerto Rico for the week; he leaves tomorrow morning. After that, we’ll have a full 2 weeks of family together time – which is much needed and always enjoyed.

Nikki is adjusting really well to her Cozmo. In fact, most of the time she gives herself insulin and THEN tells me about it. That works okay because the Cozmo will calculate carbs for her; and because she eats the same things, so she has the carb content memorized for each serving of her favorite foods.

The one thing Nikki is insisting on is the use of Emla cream before a new site insertion. I can’t say I blame her. Emla numbs the area, so she doesn’t feel it when I put the new cannula (which is basically an I.V.) in. We change every 2 days and if I can elminate even one ‘poke’ - I will.

Her fingers are looking terrible these days. Just coming off some incidents of ketones – which cause her to have to check her blood sugar even more often than our normal 9 times a day – a couple of her fingers are literally black on the tips. It’s heartbreaking to see, but she doesn’t even notice anymore – and never really complains. I put bandaids on the fingers that are really bad, to help remind her to use other fingers for testing.

All for now ……..

Saturday, December 13, 2008

This-n-That



I’m writing this in the middle of the night, which is normal for me. We’ve had a busy few weeks, which is normal for US. Nikki was sick a couple of days this week – ‘real people sick’ – which is always complicated by diabetes. She had ketones for 2 days and felt generally yucky. She went back to school on Thursday, just in time for her chorus concert Thursday night. The chorus sounded really great and Nikki loves singing. Next week Amber’s chorus is singing at the mall and then is doing their Christmas concert at our church (they’ve outgrown the facility at school) on Thursday night.

Tonight (Friday) Amber went to her friend’s house for the night and Bryan is in Louisville with his referee crew for the Kentucky State High School Football Championships. Tomorrow night our high school, Simon Kenton (where Amber will go next year), is playing in the ‘big game’ for the first time in the school’s history. We have a lot of kids from youth group involved with the team and 2 of Bryan’s closest friends are the team’s doctor and physical therapist. The whole town is pretty pumped about the game – even if they don’t win, they’ve never made it this far before. With the weather being so cold, and this being a tough time of year for Nikki healthwise, we are going to watch the game from the warmth of our home.

Since Amber and Bryan are both gone, Nikki and I went to a movie. We saw Bolt, which turned out to be one of the cutest movies I’ve seen in a long while. We ate McDonald’s for dinner; then came home to wrap presents and watch Christmas movies. It was a really nice mother/daughter evening. As I write this, Nikki is sleeping beside me – talking. She is sound asleep, but she talks A LOT in her sleep – it never fails to crack me up.

One bit of pump related news..... We now know that on the Cozmo you HAVE to change the pump site every 2 days, no matter what. If not, you routinely get a blockage on the 3rd day - which usually means ketones are present by the time the pump notifies you that there is a blockage. We like the pump and I suspect that the longer she is on it, the more familiar we will be with the little quirks - just like the mini med before.

All for now......

Friday, December 5, 2008

Dance, Dance, Dance

This posting is just to show off some pictures I took of Nikki at dance class. I hope it also shows how diabetes doesn't have to hold you back from doing anything you want to do. You can see Nikki's pump in all the pictures, sometimes she disconnects and other times she just doesn't want to fool with taking it off and on.
video

Thursday, December 4, 2008

Crazy, Crazy, Busy, Busy











Wow! It’s been a long, crazy, busy 2 weeks. Last week, on Tuesday, Nikki’s class took their annual 5th grade field trip to Frankfort, Kentucky. We went to the Capitol Building, the old Capitol Building and the History Museum. It was a fun trip. Nikki even stopped Kentucky State Senator, Damon Thayer, to introduce herself and tell him she was hoping to go to Washington this Spring, to talk about diabetes.

Thanksgiving was wonderful. We were able to spend the day with our family in Lexington. Towards the end of the evening, Nikki’s pump beeped at her and told her there was a blockage – which means she wasn’t getting insulin (and we didn’t know for how long). She was high and had ketones. I had to insert another site, etc. etc. After that was done, I sent Nikki in to Nini’s room (my mom, her grandmother) to get her coat. When she didn’t come out right away, I went to check on her. She was standing in the room crying silently. It sucks (excuse the language) to have to deal with diabetes problems on Thanksgiving. She got through that rather rapidly and moved on, like she always does.

Bryan, the girls and I have the house decorated for Christmas, all 5 trees are up! It looks great – if I do say so myself. I’ve had finals all week for my own coursework and it’s taken several hours every night to get all the work done; that’s after teaching all day and all the other stuff that most busy people have to do. The good news is I’m done with all but one exam until January!!!! Yaaaahhhhooooo!!

Last night Nikki had another unexplained high. It took a while to get it down and that meant she didn’t get a great night's sleep. So now it’s 8:30 a.m. and I still haven’t gotten her up for school (which I am getting ready to do). I wanted her to have a little bit of extra sleep since tonight is dance class – it’s also parent observation night which means LOTS of new dance pictures!!!

Sunday, November 23, 2008

A Trip to the Movies





It’s about 1:45 a.m. on Sunday morning, which really isn’t that late for me. I come from a long line of non-sleepers and I’m pretty sure both my girls inherited that particular strand of DNA as well. I took the girls and a group of friends to see Twilight last night, we had a great time. It was more than worth it just to sit and listen to all the gasps and giggles from the countless number of female teenagers in the audience.

It struck me that it was one of those moments that Nikki wasn’t thinking about her diabetes – well, let me rephrase that. She stopped thinking about her diabetes after she bolused for the drink and nachos she was eating – as I began to mentally calculate how many carbs were in the nachos, she leaned over and said “there are 18 carbs, I already figured it out” – Anyway, AFTER she bolused, she became one of the giggling, gasping girls in the audience and it was so nice to just sit there and enjoy being with them.

This coming Tuesday is Nikki’s 5th grade field trip to our State capital, Frankfort. Everyone is so excited; the school rents Coach buses for the 5th grade classes, so they’ll be watching movies on the way down and back, plus lunch near the Capital and a tour of the building as well as the State Senate. It’s hard to believe that this will be my last 5th grade field trip as a mom. I’ve actually been doing a lot of tallying those kinds of things this year; last Halloween Party, last 5th Grade Field Trip, last Christmas Party – all this being a “last” as the mom of an elementary school student. Next year I will have a middle schooler and a high schooler, UUUGGGHHH. I’m ashamed to admit how many times I’ve found myself tearing up at that thought of this school year.

We are preparing for Thanksgiving in Lexington with my parents and then a weekend of movies (TWILIGHT again) and decorating the house. In spite of the craziness of our lives with diabetes, we truly do have much to be thankful for.

Saturday, November 15, 2008

Nikki Has Something to Say


WHAT I HATE THE MOST!!!

One of the things I hate most about diabetes has nothing to do with my blood sugar, my pump or my sites. It's that almost all of my friends say "I wish I had diabetes". I get so mad I can't think straight. All they know is that when I'm low I get to eat and sometimes that is when they can't eat. They say "lucky" or "I want diabetes". It drives me nuts because they don't know that diabetes is a horrible disease.

Diabetes is a monster. A monster that we haven't defeated but I'm not going to let diabetes get in the way of the places I'll go.

Thursday, November 13, 2008

November is Diabetes Awareness Month




The number of children diagnosed with Type 1 Juvenile Diabetes grows by 3% every year - we have to stop it now

Wednesday, November 12, 2008

Transitioning from Health to Type 1 Diabetes: When Your Child is Diagnosed

April 6, 2003 is a day that I will remember, in minute detail, for the rest of my life. That was the day that I transitioned from being the mother of two beautiful, healthy girls to being the mother of two beautiful girls-one healthy and one with type 1 diabetes. There is no way to be prepared for a day like that; having said that, there is also no way to avoid dealing with it. Many transitions occur for parents during the life of their child or children; having a child go from being one with perfect health to one with a chronic illness is among the hardest transitions that some families have to face.

This particular transition has so many branches that we will call it the ‘diabetes transition tree’ for this writing. A large branch of this tree is the fact that little has been done in the way of studying the effects this diagnosis has on a family. According to a study published in the Journal of Advanced Nursing, “Little is known about the experience of parents of newly diagnosed children as they cope with and adapt to their new situation” (Lowes, Gregory & Lyne, p. 253). In this study, 38 parents were interviewed about their experiences dealing with their child’s diagnosis. The conclusion of the study was very informative and may be a good starting point transitioning parents into what amounts to a new direction in their lives: Before diagnosis, most parents associated their child’s symptoms with normal childhood illnesses. The unexpectedness and speed of the diagnosis left all parents ill-prepared to deal with the situation. Their world suddenly changed, leaving them insecure and uncertain about the future. Diabetes intruded emotionally and practically upon all of their lives. Parents successfully adjusted and adapted their lives and rebuilt a new model of the world to accommodate their child’s diabetes (Lowes, L., Gregory, J., & Lyne, P. [2005] p. 253).

The same study discusses Parkes Theory of Psychosocial Transition. To summarize this theory, it is the assumption that a loss, of any kind, causes individuals to be forced to change their view of what the world was supposed to be, versus what the world has turned out to be. “A familiar world suddenly becomes unfamiliar, causing feelings of anxiety and fear that cloud judgement and impair concentration and memory” (Lowes, Gregory & Lynne (2005), p. 254), this is a powerful and accurate description of what is usually a sudden and unexpected diagnosis. In my personal experience I have found Parkes Theory to be accurate; however, it does not account for one factor that contributes to the grief associated with a diagnosis and that is something I call the ‘It Could Be Worse Syndrome’. This syndrome is actually perpetrated by well meaning strangers who like to say to parents “well at least it is only diabetes, it could be worse”. What that does is make the parents feel guilty for being devastated over their child’s condition. It compounds and complicates already volatile emotions; which makes the transition even harder. Most parents are aware, within days of their child’s diagnosis, that diabetes is a life threatening disease. This is something that many non-diabetic people are not aware of; in fact, “38% of Americans wrongly believe that insulin treatment either renders diabetes harmless, cures it, or they don't know the effect of insulin” (Health Care Strategic Management, (1999), p. 8).

Another branch of this complicated transition tree is food. Most families have to completely relearn what they thought they knew about carbohydrates and food in general. Diabetes has a way of making food and eating a chore. According to the Juvenile Diabetes Research Foundation, “Once they've accepted the fact their child needs daily shots or pumped insulin, food becomes the major focus and often the cause of considerable stress for many parents of children newly diagnosed with type 1 diabetes” (2006). Suddenly, a large portion of the day is spent thinking about food: how many carbs are in that; are they fast acting carbs or complex carbs; will that piece of candy cause a delayed high blood sugar; and on and on the questions go. There is no break from thinking about food, it is one of the most important parts of daily life; it is permanent and it is exhausting.

Another large part of this transition has to do with the emotions and life changes for other children in the family; the ones who are still healthy. A diagnosis of this magnitude tends to absorb the parents completely; where does that leave the siblings of the diabetic? A study done in 2001 by PhD and Licensed Social Worker, Colin Hollidge, showed that a well child, who has a diabetic sibling, had emotions that rivaled the mother’s in intensity. Well siblings, in Holidge’s study, had to deal with intense feelings of anxiety, guilt, jealousy, shame, worry and survivor guilt; that is a lot of weight to carry on young shoulders. My oldest daughter has shared stories with me about those early days in her sister’s diagnosis. I thought the best thing for her was for her was to go on to school, so things could at least be normal for one of my children. That is not how she perceived it. She felt pushed away, completely out of control and out of her very young nine year old mind with worry. She believed that her sister was going to die and she would not get a chance to say goodbye. In the years since, she has shared her feelings of shame for being jealous that her sister gets so much attention; and her feelings of jealousy that I love her sister more because she has diabetes. Her feelings are strong and very real. Ironically, my diabetic child has suffered the exact same feelings for the exact same reasons, only they are a mirror image. She has felt like I loved my non-diabetic daughter more because she does not have diabetes; she has felt shame that she wishes she was not the only one in our home with the disease; she has felt jealousy that her sister can run out the door without having to remember a bag of supplies that may save her life-or end it if they are forgotten. Like her sister, her feelings are strong and very real. Unless, a cure is found for diabetes they are most likely going to have live with these emotions on different levels, at different times, for the rest of their lives.

Perhaps the biggest branch of this transition is learning how to live with all the changes. There was a study done in 2000 showing children who had some form of coping skills training, were more likely to have better control of their diabetes and felt fewer emotional problems related to having a chronic illness (Faulkner, 2003). This indicates that parents, who were proactive in addressing diverse issues associated with their child having type 1 diabetes, clearly had a positive affect on their child’s overall emotional well being. A study conducted by Kathleen Hanna, PhD and Diana Guthrie, PhD, listed several areas that parents considered helpful in dealing with their child’s diabetes; they are directive guidance which provides practical support; non-directive support which include counseling behaviors such as listening and unconditional support; positive social interaction which includes participating in social engagements for fun or relaxation; and tangible assistance such as sharing many of the numerous tasks involved in caring for a child with diabetes (2003, pg. 216). The common thread in both of these studies appears to be communication; whether that communication is from patient to doctor, parent to parent, or parent to child.

When contemplating ways of dealing with this disease, well siblings must be part of that plan. Hollidge (2001) suggests several steps parents can take to help their well children adjust; including “physcoeducational groups designed to help parents understand the stressors of the well sibling” (pg. 24). Hollidge believes that when parents come to terms with their own emotions about their ill child they will be better prepared to understand and accommodate the emotions of their well children. Likewise, she feels that entering well children in a group program, specifically designed for siblings of diabetic children, will help them with the myriad of emotions that come with having a chronic illness living in the middle of the family through the person of their brother or sister.

It is clear that of all the transitions families go through, the ones dealing with the life-or possible death-of a child are the hardest to handle. There are many facets to accepting that your child is no longer healthy; that he or she will no longer have a carefree childhood that should be the right of every child. Learning to accept the disease, educating yourself about the disease, facing your own emotions, and facing the emotions of your well children are all branches of this enormous tree; they all have to be dealt with. Whether you are the parent of a chronically ill child or a professional helping a family through this difficult transition, the most powerful weapon, and sometimes the only weapon, you will have at your disposal is knowledge; the key to mastering that weapon is learning how to use it.

Saturday, November 8, 2008

Halloween and more




It’s taken a while, but I think I will live LOL. I started Nikki and Amber on antibiotics because Nikki was showing some severe HIGHS which usually happens about 5 days to a week before she actually gets sick.

Halloween was fun. Nikki went as a princess – Cinderella and Amber was a vampire (she’s currently hooked on the book series Twilight) and they had a blast. Nikki’s blood sugar maintained itself, which always makes things more fun for her.

I had the opportunity to teach Nikki’s class on Friday, yep she called me Mrs. Turner the whole time (while giggling). She’s been waiting a very long time, so she says, for me to be her teacher. She says I’ve taught every other class in the whole building except for hers, so she was pumped. Hurt my feelings a lot I tell you :D (not).

For anyone getting a pump for the first time, be prepared for unexplained HIGHS (as if any of the HIGHS or LOWS are really self-explanatory). We’ve had to play around with basal rates and food bolus ratios, but I think we are finding our stride.

For those of you who may not know, November is Diabetes Awareness Month! Let's educate as many people as possible, starting with INSULIN IS NOT A CURE!!! That one drives me crazy (that people think diabetes isn't a big deal as long as the diabetic takes insulin).


I've also decided to put in quotes from a fabulous book from time to time. It's called Schuylar's Monster and even though it does not directly deal with diabetes; all parents, who have a child who has a chronic condition or illness, can relate to the message of the journey. So here is the first quote:


"Any parent knows how difficult it can be to resist the urge to suck up your child's pain and make it your own (pg. 164)".


Here’s hoping for a quiet 2 weeks before Thanksgiving…….

Sunday, November 2, 2008

The Sweetness of My Girls


I wrote this yesterday (Saturday 11/1) but we've been having computer router problems, so I am just now getting it posted......




I’ll start off this blog by saying I’m sick. That’s not the sort of thing I readily admit, for a variety of reasons, but I must explain that for this writing to make sense. I’ve been sick for about 3 weeks, and 2 days ago it really started to do me in. By this morning I thought my head would explode. So I’ve been in bed, literally, all day.

My girls have had people in and out all day, but they have been so wonderful about just letting me lay here with my headache. They pop in from time to time and watch a show here in my room, or ask a question and they’re off again. This evening they are both home with one friend each; Bryan is gone to ref a high school football game.

I did start on antibiotics this afternoon; so I’m expecting a full recovery by …. Tomorrow? Being sick just isn’t in my schedule :>) Anyway, I was just about to fall asleep when I heard a weird sound, a weird ‘mommy’ sound, it was enough to make me sit up and listen harder. Then the sound got louder, it was Nikki crying. One of those ‘there is something wrong, for real’ cries. I got up and went into the kitchen, Nikki was crying very hard and Amber was standing there beside here with arms around her (their friends were still downstairs).

This is what happened: Nikki’s dog had gotten her leg tangled in Nikki’s ‘wires’ (pump) and had accidentally pulled out the pump site. That didn’t feel too good, but Nikki didn’t want to bother me with it; so she decided she could handle the situation by herself – let me also say that the dog pulling out her wires has never happened before – it was fluke. She came upstairs, got out a clean site and tried to insert it (it’s like an I.V.) herself in her stomach, without using any numbing cream. At the last minute she ‘flinched’ when inserting it and the cannula (i.v. tubing) didn’t go in all the way and it was hurting her. She still didn’t want to bother me.

Her next step was to try the ‘skin cement’ (something we use when the sticky tape isn’t adhering to her skin like it should – it helps hold the i.v. in place) to see if that would make the site stay in anyway. NOT A GOOD IDEA; it caused stinging, intense stinging. At this point she began crying, not loud enough for me to hear where I am, but Amber heard her and came to find out what was wrong. Amber looked at the site and when she touched it – Nikki had a meltdown. Now for an adult, it probably doesn’t sound like that big of a deal, but when you’re 10--well, it just is.

I came in, took the site, which was hanging halfway out, the rest of the way out; iced it and we started over. It took only a few minutes of mommy hugs and kisses for Nikki to calm down and things went back to normal almost immediately (Amber stayed beside her until she had calmed completely down – I made them both promise that they would get me even if I am sick :D). The focus of my story is the sweetness of my girls. Nikki’s concern for me and not wanting to make me get up, Amber’s concern for her sister….I am just so proud of the young ladies they are. My cup runneth over.

Thursday, October 30, 2008

Dr. Suess and Diabetes



Those who know me well, know of my love for Dr. Suess' children's books. I've read them to my children since before they were actually aware of anything except the sound of my voice. I have many favorites, but one in particular is on the top of my list. It occurred to me tonight that this book (which I will name in a minute) accurately and profoundly describes how Nikki's life (and mine, Bryan and Amber's) was before diabetes; the moments we've had since diabetes; and the future we are determined for Nikki and all d-kids to have. The name of the book is "Oh, The Places You'll Go" and it was the last book Dr. Suess ever wrote. Please allow me to share it with you now and as you read, really absorb the words and the meaning behind them. (The words in brackets are mine.)





Oh, the Places You'll Go!



Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose

You're on your own.
And you know what you know.
And YOU are the one
who'll decide where to go.

You'll look up and down streets.
Look 'em over with care.
About some you will say,
"I don't choose to go there."

With your head full of brains
and your shoes full of feet,
you're too smart to go down
any not-so-good street.

And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.

It's opener there
in the wide open air.
Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And when things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.

OH! THE PLACES YOU'LL GO!

You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.

You won't lag behind,
because you'll have the speed.
You'll pass the whole gang
and you'll soon take the lead.
Wherever you fly,
you'll be the best of the best.
Wherever you go,
you will top all the rest.

Except when you don' t
Because, sometimes, you won't.
I'm sorry to say so but, sadly, it's true
that hang-ups and bang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.

You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.

And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself is not easily done.

You will come to a place
where the streets are not marked.
Some windows are lighted.
But mostly they're darked.
A place you could sprain
both you elbow and chin!
Do you dare to stay out?
Do you dare to go in?
How much can you lose?
How much can you win?

And IF you go in,
should you turn left or right...
or right-and-three-quarters?
Or, maybe, not quite?

Or go around back and
sneak in from behind?
Simple it's not,
I'm afraid you will find,
for a mind-maker-upper
to make up his mind.

You can get so confused
that you'll start in to race
down long wiggled roads
at a break-necking pace

and grind on for miles
across weirdish wild space,
headed, I fear,
toward a most useless place.

The Waiting Place...

...for people just waiting
Waiting for a train to go
or a bus to come,
or a plane to go
or the mail to come,
or the rain to go
or the phone to ring,
or the snow to snow
or waiting around
for a Yes or a No
or waiting for their hair to grow
{or waiting for a cure}
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps,
for their Uncle Jake or
a pot to boil,
or a Better Break
or a string of pearls,
or a pair of pants
or a wig with curls,
or Another Chance.

Everyone is just waiting.

NO! That's not for you!
Somehow you'll escape
all that waiting and staying.
You'll find the bright places
where Boom Bands are playing.

With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!

OH, THE PLACES YOU'LL GO!

There is fun to be done!
There are points to be scored.
there are games to be won.
And the magical things
you can do with that ball
will make you the
winning-est winner of all.

Fame!
You'll be famous as famous can be,
with the whole wide world
watching you win on TV.

Except when they don't.
Because, sometimes, they won't.
I'm afraid that some times
you'll play lonely games too.
Games you can't win'
cause you'll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you'll be quite a lot

And when you're alone,
there's a very good chance
you'll meet things that scare you
right out of your pants.
There are things, down the road
between hither and yon,
that can scare you so much
you won't want to go on.

But on you will go
Though the weather be foul
On you will go
though your enemies prowl
On you will go
though the Hakken-Kraks howl
Onward up many a frightening creek,
though your arms {and fingers}
may get sore
and your sneakers may leak.

On and on you will hike
and I know you'll hike far and
face up to your problems
whatever they are.

You'll get mixed up, of course,
as you already know.
You'll get mixed up with
many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that
Life's a Great Balancing Act.
Just never forget to be
dexterous and deft.
And never mix up
your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and 3 / 4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

So...be your name Buxbaum or
Bixby or Brayor Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!

Your mountain is waiting.
So...get on your way!



Wednesday, October 29, 2008

November 14th


WORLD DIABETES DAY IS NOVEMBER 14TH

Type 1 diabetes is growing by 3% per year in children and adolescents, and at an alarming 5% per year among pre-school children. It is estimated that 70,000 children under 15 develop type 1 diabetes each year (almost 200 children a day) [IDF, 2008].

Saturday, October 18, 2008

More Random Thinking




The upgrade to this pump has triggered the “I can do it myself” button in Nikki. While we all have an ‘independent button’, d-kids have an extra one reserved for taking care of their diabetes. So far we are very impressed with the new pump and Nikki is reluctant to hand it over to let me or Bryan do the button pushing – our requests to “let me see for a minute” are usually met with a single sentence: “I can do it myself”. Now don’t get me wrong, she’s not rude when she says it, she simply wants to be in charge of her own health. Something most kids don’t have to even consider at 10 years old, but is normal for kids that struggle with a chronic illness or condition.

Since we began blogging, we’ve met a lot of great people. One family we’ve bonded with in particular is Mom – Jill and Daughter & D-Kid – Kacey. I noticed that Nikki left a comment on Kacey’s myspace page the other day that simply said “I hate diabetes, don’t you?” It kind of took my breath for a minute; I immediately started to over analyze the comment, try to figure out why she said, what caused it, is she sad, etc. etc. All the ‘over protective’ genes jumped into high performance mode. Thankfully, I got sidetracked before I could drill Nikki about it, which had the benefit allowing me time to digest what she said. Why shouldn’t she be mad, or sad, or sick of it? I realized that she was probably having a perfectly great day but just needed to reach out to her friend that would completely understand such a simple, but profound statement. So now, instead of worrying, I am thankful that God has sent Jill and Kacey our way.

Nikki is off spending the night with her best friend, Samantha, whose mother is one of my best friends. Nik checked in from the skating rink a few minutes ago to tell me she was going to eat popcorn and drink a Sprite; her exact follow-up statement was “I don’t need you to tell me how much insulin, just tell me how many carbs are in a McDonald’s sized Sprite? I can do the rest myself”. ENOUGH ALREADY – (I didn’t actually say that) but come on. How much independence can a mommy take on all at once – diabetes or not!!

I took the opportunity, while Nikki is hanging out with her friend, to have some mother/daughter time with Amber. I took her to the mall (where else would you take a teenager). We went in search of a t-shirt representing Amber’s latest obssession – The Twilight Books (which I’m about to start reading). This took us to a store that is pure GOTH; Hot Topic but I find it rather cool. Amber came away with 2 t-shirts; my favorite one is the one with Edward the Vampire on the front and the words “You Are My Life Now” on the back. Now I know I’m probably not setting the perfect mom example in my support of her love for these characters, but I, myself, LOVE vampire stories and from what my own friends tell me, this is an AWESOME book series; so that is my justification and I’m sticking to it; that and the fact that my kids love The Lord and know fact from fiction. Amber has made me promise to have the first book ‘Twilight’ read before the movie comes out next month. She is thrilled that the boy that played Cedric Diggory in the Harry Potter Goblet of Fire movie (H.P. a.k.a. Daniel Radcliffe is the true love of Amber and Nikki) is the one that plays the main character of Edward in the Twilight movie.

Well, enough random wandering for one blog…….

Tuesday, October 14, 2008

We Are Pumped, Again!







Today was the day! Nikki is an official Cozmo Girl! Nikki, Bryan and I spent about 2-1/2 hours at Children’s today gettting trained on the pump upgrade and we are thrilled with all the new advances made since we began pumping on the Mini-Med 4 years ago. This new one is amazing and does everything but talk to us; it’s her meter, her food menu, there are alarms that remind her to retest if she has been high or low; it calculates correction boluses – at different rates if we need it to -- and that’s just to name a few things. Nikki also loves the new site insertion gadget; it’s called a Cleo and it’s a wonderful little device.

The people at Children’s were wonderful, like always,and we felt very comfortable with the Cozmo when we left. After training Nikki had to get her flu shot; just one more poke that she takes without complaining. The nurse administering the shot was a hoot and Nikki actually laughed through most of the ordeal.

Cozmo has already beeped at us and told Nikki that since she was high 2 hours ago she needed to retest her blood sugar; it has a much better brain than mine J. All the new technology is amazing; and the continual new and astounding upgrades make us hope that a cure is closer than ever.

Tomorrow will be her first full day on Cozmo and she will be taking it to school. Paula, if you are reading this GET READY! I’m looking forward to hearing your take on this new technology.

Nikki is dying to have Samantha, Brooke and Emily (her best friends) check out the new pump; they are always so excited when she has anything new to share – they are true best friends. Samantha and Brooke have even asked Nikki to poke their fingers for a blood sugar check just so they would know what it feels like! You can’t top friends like that.

All for now……..

Thursday, October 9, 2008

Checking In


So it’s 2:00 in the morning and I can’t sleep; which I blame on my mother and my grandmother – it seems that bad sleeping habits are genetic and I inherited the problem from them.

This fall is proving to be extremely busy. I’ve been accepting more teaching positions (which is a good thing) and this semester at Western Kentucky is kicking my butt. Graduation is about a year away; but then I head right into work on my Master’s so it’s really a lot further away than that; definitely worth it – I do recommend that you figure out what you want to be when you grow up and get your schooling in before a husband and kids (oh and before you hit 40).

We go, this coming Tuesday, for Nikki’s new pump start up – she’ll be an official “Cozmo Girl” at that point and she’s very PUMPED – am I not funny ☺!

I’ve been reading this amazing book that I sort of stumbled upon while doing research for one of my classes and I highly recommend it to anyone and everyone: It’s called “Schuyler’s Monster”. It’s about a little girl with a chronic illness that is very rare, it’s a true story told from and through the eyes of her dad, who is an amazingly gifted writer – Robert Hummel-Hudson; in fact I’m hoping to obtain permission to link his blog with mine, so check back from time to time to see if it’s on Our Favorite Links at the bottom.

This is pretty much a RANDOM blog because things have been relatively quiet, which means only the NORMAL highs and lows; no unconscious events, or extreme numbers and yes I should know better than to actually say things are okay out loud, or in writing, but there it is. Amber and Bryan returned from their Texas trip this past week -- Amber had a wonderful time with her best friend, Khadija. My Aunt has come through her surgery well enough and is finally out of the hospital; to top off a semi-calm (but incredibly busy) few days.....this evening we had our weekly youth group meeting here at our house. This usually means about 22 - 26 middle school kids in our home, every Wednesday night for about 2 hours. It's a great bunch of kids and they have a blast. Tonight, for example, 2 of the boys had a hot dog eating contest and ate until one of them threw up (and when he was done he ate some more, he was the champion after all - way to go Drew); how can you top that kind of fun? It's moments and evenings like these that we are able to put the uncertainty, frustration, worry and all the other 'stuff' that hovers around diabetes on the back burner and enjoy life.

I’m sure I’ll have lots to report next Tuesday when Nik Nak is hooked up with her new Kentucky Blue Cozmo Girl Pump.

Until then……..

Thursday, September 25, 2008

CozMo Here We Come!



I love the CozMo people and our new pump hasn’t even arrived yet! I had a call from our representative today to let me know that our new pump would be here on Tuesday! The cost is great for us and I am so thrilled at the final dollar numbers!!!

Nikki started on the Mini-Med in 2004, a year after her diagnosis and we love it. When the warranty ran out on that last year we decided to switch to the Omni Pod. Most everyone I know that has the Pod loves it, but it didn’t work for us at all. I got out her old, reliable Mini-Med and she “hooked up” again. We were then faced with what we could do since it was past our 40 day (or whatever) grace period with the Insulet (Omni Pod) people. CozMo and our Nurse Practitioners – Nancy and Shannon – over at Cincinnati Children’s have been fantastically, fabulouso (ha ha, I just made up more new words) helping us get set up with a new pump. They have handled everything; it has been such a blessing.

Each year, on the first day of diabetes camp, many many vendors come to allow the parents to see the latest technology in blood glucose meters, pumps, pens, etc. and Nikki gravitated toward the CozMo. Now, I would like to say that she had a very deep insight into why she wanted that particular pump, that she read all the details on it and thought long and hard; but the fact is, she wanted the one in Kentucky Wildcat Blue (her Daddy’s habits showing through) and CozMo had the perfect color. It just so happened that we loved all the little widgets that are offered with the CozMo (like the fact that it is also her meter, so we won’t have to carry around an extra little black case everywhere, she’ll be wearing it!; so we all agreed and now we are almost there.

The next step, after getting the pump in on Tuesday, will be training at Cincinnati Children’s with Shannon or Nancy. Then she will be off and running on her new, Kentucky Wildcat Blue CozMo: Is it me or does that sound like something she shouldn’t be doing at age 10? When I say it - Kentucy Wildcat Blue Cozmo - I think of an exotic photo lay-out or something; or maybe I’m just being random again (it's possible).☺

Monday, September 22, 2008

WAIT.......WHAT?


The girls and I spent last weekend at Cedarmore, which is a youth retreat in Baghdad, Kentucky. We’ve been attending the property, for one reason or another, for over 30 years (yep, that means it started when I was a kid). It’s a great place. This past weekend myself, Kara (you remember my friend and fellow teacher Kara) and Bill Clark (our good friend, pastor and youth minister) took a group of youth middle school and high school kids. Because Bryan had football games all weekend (he is a High School Football Ref) and because she is within months of being in the youth group herself – gasp -, Nikki went along with us.

Most of you know that Nikki had a rather rough start to this new school year, so I’m admittedly a little ‘over-reacty’ (a new word I’ve just invented). Being over-reacty is a syndrom that is verified by ones reactions to the words LOW and HIGH. Here is my example: Part of the retreat is getting to listen to some great, live, Christian rock bands. This retreat featured the Dave Campbell Band. Kara and I were sitting together on the second morning, listening to the wonderful female co-lead-singer sing when Kara announced “Last night she was HIGH, today she is LOW” at which point I completely panicked, grabbed Nikki’s meter and said “where is she?!!!!” Kara burst out lauging (I seem to have this affect on her) and I suddenly realized she was talking about the singer being HIGH during the concert the night before and LOW that morning. I will leave you to absorb that.

Moving on to our next retreat adventure; we were actually in a cabin, a real cabin. In the woods, with, you know animals, snakes, bugs, no air conditioning but we did have a shower and a bathroom (Thank You!!!) We split up into different groups for Bible study times. I was a study leader for some of the 6th graders, which means that Amber was in a different group with some of her friends. Because of this, we tended to get done at different times, so we all hooked up at our cabin afterward before moving on to the next activity (allow me to digress: have I mentioned that Cedarmore is all hills? I mean, you would think that if you go UP hill, you will eventually go DOWN hill right? Not at Cedaremore; I don’t know how they pulled it off but everything is up a steep hill). Okay, back to my story…..

Saturday afternooon I arrived back to the cabin after Amber. When I walked in, she was standing there crying. She had been stung, twice, by bees (and Amber has a severe bug phobia so that just made it worse). I was tending to the sting when the door flew open, and a few, screaming girls burst in screaming SNAKE SNAKE!!! I said “shut the door, don’t let it in”. So they did. A few seconds later the door burst open again , this time it was Nikki (by the way, Kara was with me at this point also). Nikki looked like she was doing one of those silent laughing things where you inhale and can’t exhale. Only, after I really looked at her, I realized she wasn’t actually breathing. I stood up and she finally got out “A SNAKE ATTACKED ME” and collapsed into my arms in a complete and total (and much warranted) meltdown. It took us a good long while to get her calm enough to tell us what happened. Her and some of the other girls were “hanging out” between our cabin and the boys’ cabin. The boys are known for their pranks so when Nikki saw what she thought was a rubber snake, she decided she would show them they couldn’t scare her with something that looked so FAKE and she stepped on it. Only guess what, it didn’t like being stepped on (and probably didn’t appreciate being called fake) and wrapped itself around her leg. She kicked it off, but by then the snake was mad and it came back and somehow wrapped itself around her again. This time she screamed and kicked hard. Her second scream got the attention of some of the high school boys, who quickly came to her rescue. According to Nikki “they held off the snake so I could get away”.

Later that evening Nikki informed me that being attacked by a snake was ALMOST as bad as having diabetes. Amber and Nikki didn’t leave our cabin for the rest of the day; I did finally get them out to go down for dinner. I guess sometimes God has a way of putting things in perspective for you, things can always get worse.

Monday, September 8, 2008

Meet The 3

video

Saturday, September 6, 2008

JDRF Walk for a Cure 2008
















Thursday, September 4, 2008

Mushy Thoughts


You know I’m a little afraid to blog this but our life has been relatively calm, atleast on the diabetes front, these last few days. We’ve had some good numbers and here’s hoping it stays that way. We are gearing up for our Walk for a Cure on Saturday morning. My biggest stress right now is that our team shirts haven’t arrived (control freak much?). Ah well, that is really nothing….so I will quit thinking about it.

Nikki’s 3 best friends are walking with us and one of Amber’s closest friends. Isn’t it amazing that we hear so much about the bad things kids do and here we have some very young people giving of themselves simply because they care about someone else. My feeling is that they are the actual majority.

The best news was a surprise text message I had from my step-daughter Briana. She is a busy girl, a senior at Georgetown University and we adore her; Nikki is certainly a big fan of her big sis. The last few years have stretched the amount of time we go in between visits but the bond the girls share, as sisters, is strong. Anyway, Bri called to say that she was coming to walk for Nikki. After I wiped away my own weepy eyes, I called the school to share the news with Nikki and her teacher told me Nik was literally BEAMING. I relayed this message back to Briana and she responded with a message that she had tears in her eyes. So there we were, 3 of us silly girls, in 3 different places moved to tears by a simple act of love. (Mushy Me!)

And more good news worth mentioning, through this blog and our MySpace page we’ve connected with a family in Virginia: mom – Jill and newly diagnosed 8 year old Kacey. Kacey started school with diabetes for the first time this week and it seems as though things may be starting to settle down for them as well. Way to go you guys!!!! There is a link to Jill and Kacey’s blog on the bottom of our page, check it out; it’s called Diabetes Sweeties.

All for now………..

Sunday, August 31, 2008

Mom Is Mad



So, here we are still trying to get Nikki’s blood sugar numbers under control, but life is moving along rather normally other than that. Yesterday was Saturday and several of Nikki’s friends from the neighborhood and school were over hanging out and doing what kids do.

A couple of hours into their playing Nikki asked if she could ride her bike down to Emily’s (one of her best friends) house. I said no because we had just been having so much trouble with her numbers and Emily’s house is quite a little trek (not really, but it is when you are talking about extreme lows for no good reason).

Now I think I have mentioned in previous posts that Nikki is my very compliant child right? Ummm, I may need to rethink that. About an hour and a half after I said NO to her request my phone rings, it’s Nikki and here is what she said “Mom, I’m at Emily’s and I feel low”. My head – and my mouth – exploded.

You know that Bible verse: Out of the overflow of the heart the mouth speaks…. God sure knows what he’s talking about. All the stress and worry in my heart from the last couple of weeks came right out! I yelled into the phone something like “why are you at Emily’s, I’ll be right there young lady and you are in more trouble than you can handle”. Then I couldn’t find my car keys, which Amber helped me locate, I grabbed a fruit roll up and headed down the street. When I arrived I told her to get into the car NOW, asked Emily's mom if we could leave her bike at Emily’s and roared (in my tiny 4 cylinder Kia) back up the street. Fussing all the while.

I was repeating this story to one of my closest friends, Kara (you remember Kara, she’s the sub-teacher that had to take Nikki off the playground in a wheelchair 3 days ago). I didn’t realize how crazy I probably sounded to Nikki until I noticed that Kara was laughing hysterically at me. She was laughing because of the things I was saying to Nikki..........I LOUDLY told Nikki as I was bringing her back home that I wasn’t so furious that she disobeyed me, but the next time she disobeys she better take her meter and a snack!!!!!!

Stop Laughing

Oh well, that’s how we roll :D

Thursday, August 28, 2008

Low Low Low High High Low Low High


We honestly try to maintain a very positive outlook on dealing with diabetes. But today I think Nikki and I are officially suffering from burn out. Today is the 12th day of school and we have had blood sugar problems every single day. The problems have been with extreme lows. Today was the worst.

I was just on my way home from picking up Amber and some of her friends from school when my cell phone rang. It was Jill from Nikki’s school and she said “Sheri we need you to come right now; Nikki is unable to walk in from the playground and they’ve taken the wheel chair out to get her”. I turned the car toward the school, thankfully I was only about 2 mintues away at that point. They had actually called 911 but the nurse felt that she didn’t need them after all because Nikki was conscious enough to drink.

We got to school and all 5 of us head into the building. Amber and all the friends with her are former students of Kenton Elementary so they knew where to go and lay low while I dealt with the situation. Nikki’s blood sugar was 70 by that point, which was after a treatment of Capri Sun juice. We decided to give her another juice and then all we could do was to sit with her and wait; she was still too shaky to walk on her own.

Because our lives can never be ordinary, the little twist to this story is that 2 of the teenagers that were with me are the children of Nikki’s subsititute teacher for today (and a very very close friend of mine). This solved my problem of having too many people to put into my tiny Kia to safely get them all home, because 2 of them could stay at school with their mom.

Anyway, we are home now and tonight her sugar has been HIGH!!!!!!!!!!!!!!!!!!!! And we both feel like screaming!!!!!!!!! Tomorrow we will get up and start over with fresh determination, but tonight I think we will let the “burn out” just sit with us.

Monday, August 25, 2008

We Are 7.4


Today Nikki had her diabetes check up at Children’s and it was a pretty good one. Her A1C’s are coming down after registering 8.2 in early summer because of illnesses all winter. Today they were 7.4. That is a great number. Kids 12 and under should be 7.5 or lower, so she is considered “in control”. (Talk about an ironic term).

The nurse educator and I were intensely refiguring numbers based on Nikki’s blood sugar numbers for the last 7 days; anyone who knows me knows that math is not my “thing” so I really have to focus. Amber was at home by herself so when my phone rang with Amber’s personal ring tone I, of course, stopped the calculating and answered it. Now remember that I had already talked to Amber 2 times before this call; this is what she said “Mom, hang up and call me back, I want to make sure I got this hilarious answer tone right on my phone”. HUH? My brain just simply quit working (numbers have that affect on me). I politely said “Amber I can’t right now, remember I am with the doctor and we are working on new basal and bolus rates?” She said “oh, yeah I forgot, okay bye”. She forgot? It had been whole 10 minutes since I had checked in with her. However, once my brain waves starting moving again I found the whole thing kind of ‘centering’. Diabetes tries, on a rather routine basis, to take over our lives and just when I’m feeling slightly overwhelmed, something ‘normal’ happens and I realize it really will be okay; well as okay as it can be with a teenager in the house -- ROTFL.

The school day was a weird one. There was a substitute (one that I did not know) in for Nikki’s teacher so the nurse (our own personal angel, Paula) contacted the sub right away to let him know that Nikki was to be allowed to come down to her at any point that she needed to test. I have no idea what the man was thinking, but about 30 minutes before lunch she requested that she be able to go down and test because she was feeling a little off and he actually told her NO!!!! Needless to say, I was not at all happy when she called me. I hung up from Nikki and called right back so that I could speak with the tireless Mrs. Schuler and all I had to say was “the sub told Nikki she could not come down and test her blood”. She handled it (and very well) from there. So even though I wasn’t happy, it did give me the opportunity to once again see how great people can be and how blessed I am with wonderful friends.

All For Now……..

Sunday, August 24, 2008

71 Pokes



Last Sunday Nikki and I decided we wanted to see how many times she actually pokes her fingers in one week, 7 days. Nikki was vigilant in keeping up with her test strips -- those of you who either have diabetes or live with a diabetic know that used test strips take on a life of their own and move around your house, car, yard, classroom, etc. at will, so it was a bit of a challenge to keep them all in ONE spot for 7 days.

After church this morning we returned home and focused on counting the strips she had used and trying to decide how to really make a point regarding exactly what your fingers (or arms) go through, day in and day out. We decided that since we are currently fundraising for the diabetes walk on September 6, we would make a sign with all the strips (pictured above).

Nikki poked her fingers a total of 71 times over the last 7 days (She doesn't bleed well on her arms, so we don't use them for sugar testing). Think about that for a minute and then mulitply that number times a lifetime of finger pokes! -- unless we can find a cure very soon.

I'll close this posting with a random thought, (me? random?). You know those diabetes glucose meter commericals that advertise their product(s) as the best meters because they are 'virtually pain free'; I'm here to tell you that there is no such thing. It irks me more than a little to have someone --who has no idea what life with diabetes is like -- come up to one of us and say "with the new meters out it doesn't hurt to check her blood sugar now does it". YES it does, and your fingers wind up looking like 10 little pin cushions. I used to get upset (in my head) when Nikki would come home from art class after a day of painting and all the hundreds of little holes in her small fingers would REALLY show up because the paint would adhere to them.


71 pokes in 7 days...............




Friday, August 22, 2008

From Nikki to Congress


A few weeks ago Nikki decided that she wanted to apply to go with JDRF next summer to Washington DC to speak to Congress about life with diabetes. Part of applying was that she had to write a letter to her representative (Geoff Davis) talking about herself and what Congress should do to help the effort to find a cure.
We don't actually find out if Nikki is selected until January, they only take 150 kids, but whether she is picked or not doesn't diminish the amazing letter she wrote. The letter is 100% her own thoughts and words. She gave me permission to share it with you in this posting:


Dear Mr. Davis,

I remember the day I went to the hospital, I got my first IV put in then; it took 4 tries to get it in, I was 5. I had to stay in the hosptial for a few days and I remember it was the scariest thing that ever happened to me.

Since my diagnosis I keep my diabetes under control but I still have to think about it all the time, instead of just being a kid. One time I had a very low blood sugar, in school with all my friends watching, and had to go to the hospital in an ambulance; it was scary and I had no idea what was happening, I was 7.

I’ve learned to take care of my finger pokes, my pump and counting carbs but those aren’t things a kid like me should have to worry about. Every night I am scared that my blood will go low while I’m sleeping and I won’t ever wake up.

Some kids say I’m lucky to have diabetes because they think I can eat or drink whenever I want to. They don’t understand that I have to have insulin if I want to eat or when I’m low I don’t eat because it’s fun, I eat because I have to. We need Congress to spend their money on finding a cure and teaching people about diabetes. I wish eating was something I didn’t HAVE to do.

I have 2 cousins with diabetes, a friend my age with diabetes, 2 dance teachers with diabetes and none of us should have diabetes. I raise money every year to find a cure and last December my school district picked me Student of the Month because of the money I raised, which was $500.00. I go to Camp Korelitz every year and the best part of that is for a week I get to be around people who have the same thing I do, I’m not different.

Congress should make finding a cure an important thing because kids should only worry about being kids; we shouldn’t worry about living or dying every day. I know the government has enough money to help us if they really want to.

My name is Nikki, I’m a dancer, I’m a student, I’m a daughter, I’m a sister, I’m a granddaughter, I’m blonde, I’m a friend, I’m on the honor roll. I’m a diabetic and I wish I wasn’t.

Hoping for a Cure,
Nikki Turner, age 10



Wednesday, August 20, 2008

Life Without Limits





The 2008 Summer Olympics are still fresh on everyone’s mind, so this is the perfect time for this blog. I mentioned in an earlier writing that Nikki was able to meet someone very special at diabetes camp this summer. His is name is Kris Freeman and he is a world class athlete and Olympian. For those of you who may not be familiar with him, here is a brief description of him by one sports writer: For Park City, Utah–based [Kris] Freeman, the best Nordic skier this country has produced in a generation, there's no getting around the needles. The 2003 under-23 world champion now has a shot—albeit a long shot—at walking away with America's first Olympic hardware in cross-country since Bill Koch took silver in the 30K at Innsbruck in 1976. That's because Kris Freeman is the world's best endurance athlete [with diabetes] (Outside Magazine, 2006).”

When we picked Nikki up from camp one of the first things she said to me was “we got to meet a famous athlete and he gave me his autograph and he took a picture with me! And Mommy guess what?! He has diabetes too! And he was in the Olypmics!” Now for sports fans this sounds like a perfectly reasonable thing to immediately say to your parents, whom you haven’t seen for a week; however, we are talking about a 10 year old girly ballerina. Oh, wait, I forgot to mention how intensely competitive this girly ballerina is didn’t I? Seriously, majorly competitive; for example, last week at a high school football game she was attempting to push a blocking sled, when she couldn’t accomplish that on her own she enlisted the help of her 8 year old cousin Michael and together they actually moved the thing, she wouldn’t quit until she made it move atleast a little. I think that has given her the edge she has used and will continue to use to overcome diabetes, stay in the battle on the days (or weeks) when her sugar is on a crazy roller coaster ride, no matter how tightly we try to control it (her growing body just does what it wants to her sugar levels sometimes). That competitive spirit is what she saw in Kris Freeman, it’s what she identified with apart from him having diabetes. He’s overcome the disease in many ways; to her that means she can to; if he can, I can.

I was so impressed with her excitement that I came home to look him up for myself. After my initial thought “man is he hot!” I became even more impressed with the person he appears to be. Here is a snapshot of diabetes from Kris’s own words: “I have been diabetic for seven years. In that time I have never had to compromise my lifestyle because of my condition. I have carefully selected the people I use as resources for information and guidance. My number one requirement for seeking out these people is that they do not use the words can’t or impossible. A doctor that uses those words is setting boundaries and limitations on what I can accomplish. I live my life without limits. (K. F. 11/15/2007)”

Living your life without limits; now that is a motto we should all embrace! I e-mailed his coach Zach Caldwell, before I began this blog entry. I wanted to make sure I had permission to use some of what I’ve read on his blog and website. I received an INSTANT response, which I am more than a little grateful for. (He really does surround himself with good people). Actually, here is the response I received

Hi Sheri – Please go ahead and link the site, or use any content you like for your blog. If you’d like additional photos let me know. I’ll pass your message directly along to him.

Best of luck to your daughter in realizing her ambitions. I’ve known Kris since long before he was diagnosed, and I can say without doubt that managing diabetes has made him a more effective person. For Kris, it’s more of an asset than a liability because it ensures that his focus can never slip from the task at hand. I think that can be the case for any diabetic who has the will and determination to control their own destiny.

Best wishes,
Zach

At the bottom of our site is a list of links to other sites or blogs that we love and visit regularly. This list now includes both Kris Freeman’s blog and his website. I know for sure that our household will be glued to the television during the next Winter Olympics cheering on a man who stands for far more than gold.