Fall happenings and pump update

Well, Alyssa has been using the pump for a little over a month now.  We've had some ups and down, highs and lows; and tears and laughs....I would be lieing if I didn't tell you there have been times I thought I had made a mistake by pushing for Alyssa to get on the pump....I'd be lieing if I said I had not thought about disconnecting it and going back to shots.  But I keep reminding myself why this will be best for her in the long run. 

The hardest part....the first several site changes were a nightmare.  Alyssa's anxiety about them got her so upset leading up to it that it took at least an hour to calm her down to put in the new site. Fortunately that has gotten better.  The problem now is that she'll only let me put the sites on her bottom....we are alternating cheeks.  We have done the stomach once but she hated it.  Alyssa is so petite, her bottom is the only place she has any extra meat. 

We have also had a few scary high and low bgs that seem to have come out of no where.  There were also a few night time lows, but I think we've worked out those kinks with basal rate changes.  In the beginning I was checking her bgs every 3 hours while she slept, now I'm only checking once in the middle of the night.

I do finally feel we are getting the hang of things.  There definitely are many pros of using the pump.  Alyssa has much more freedom with when and what she eats....if she wants something to eat at any time, we just bolus for the carbs.   Its so nice to enter her carbs and the pump figures the amout of insulin...all of this without another injection.  This made Halloween and Thanksgiving a lot less stressful!  One site change every 3-4 days versus 12-16 injections over 3-4 days.

 Also, besides a few spikes and lows, her average blood sugars have been really good.  During cheer and tumble, we disconnect and honestly have had fewer lows during exercise because she's no longer on the long lasting insulin, Lantus. Since she's given little amounts of fast acting insulin every hour through the pump she no longer needs the long lasting.

Overall, even though I've had some moments of doubt, I believe the pump will afford Alyssa more freedom and as she gets older, more independence.  As with any change, adjustments should be expected.

P-day

I don't know who was more excited this morning... Me or Alyssa? We've both been anxious for this day, especially since we received her pump over a week ago. The huge Animas Ping Box and the slew of pump supplies are hard to miss when they are taking up 1/2 my kitchen table.

Since we've received the pump, Alyssa and I have played with it. I read 'the book' and watched the video, and when we sat down with the pump trainer things ran smoothly. Alyssa demonstrated most of the functions. After we set up the pump, filled it with insulin and checked blood sugar, it was time to insert the infusion set. The infusion set is a spring loaded device that punctures the skin with a needled and as it withdraws leaves a cannula. The tubing from the cannula connects to the pump and this is how insulin is infused.

Because Alyssa was scared, I asked her if she wanted to put the infusion set on me first. Of course she did... I'm still wearing it :)

She was a little scared but was very brave. As a reward we went out for a chocolate sundae :). So great to bolus for 50g of carbs by remote!!

The next few days are going to require close observation and I'm expecting some changes. In the beginning we'll be checking bg's before meals, 2 hours after meals, before bed, at midnight and at 3 am. The goal here is to eventually improve Alyssa's life and I feel the pump will after we all get used to it.

Another cool thing, we never noticed our endo wore a pump or even that she had T1D... Alyssa saw hers today and its the same pump we use :)

Diabetes stinks....

This morning while I was straightening Alyssa’s hair (today is picture day at school), I asked her, “If someone asked you what it was like to have diabetes, what would you say?” She replied simply with, “Diabetes stinks.” Now, for those of you who know Alyssa, you know that she can be quite dramatic. For instance, if she’s has a headache, her head is “killing her to deathhhh” or when she’s told to clean her room, she‘s been known to lay out in the floor explaining she‘s way too exhausted to take on such a task. So, as you can imagine, I was expecting a much more elaborate answer….like “diabetes is horrible!”, or “diabetes is the worst thing ever invented!”

Now most would think that this reply was a good thing. That Alyssa has adjusted to having diabetes, and that although it’s not great, it really isn’t that bad. Instead, her answer saddened me at first. What child should have to endure this? What child should not be able to eat a piece of candy without thinking about it or be able to eat a piece of their friends birthday cake without looking to their mother to be sure it’s ok. (Side note: at a recent birthday party she told me that she wanted to give up eating pizza so that she could have a slice of cake.) What child should have to prick her finger so that it bleeds before each meal, before physical activity, after physical activity, before she goes to bed, in the middle of the night, and every time she doesn’t feel just right. That’s any where from at minimum 4 and up to 8 times a day. What child should have to have 2 SHOTS in her bottom after breakfast, a SHOT in one of her arms after lunch and a SHOT in her other arm after dinner and sometimes a SHOT before bed if her glucose levels are too high.  What child should have to face the risks of heart and kidney disease, blindness, amputations, and early death?  More simply, what child should not be able to go to a sleep over or anywhere without their mom?

I know there are many diseases out there, and each one of them sadden me….especially any disease that robs a kid of the childhood they are entitled to. Diabetes is a disease that can do just that….if its allowed to….. My husband and I refuse to let this happen. The day Alyssa was diagnosed, I prayed that God would let me take this from her. I think in a small way He has because she has no fear or anxiety about the future of her disease.  I think she sees how diligent we are in advocating for her and researching for new treatments as well as preparing her to be able to manage this on her own one day.  She notices all the people who love, support, and push for finding ways to improve her life.  She knows that without research insulin would never have been discovered and meters wouldn’t be improving each time a new one comes out. Without research insulin pumps would not have been invented (We are so excited that Alyssa’s first pump is on the way and how its going to make life a little bit easier. And instead of 4 SHOTS a day, it will be a new infusion site every 3 days!!) Through all of this she believes living with diabetes will get a little bit easier over time. Most importantly, she trusts my words when I say there will be a cure one day.

I’ve said this many times….Diabetes is the first thing I think about in the morning and the last thing I think about before I go to sleep, and I will gladly take that on for her.  In Alyssa’s eyes diabetes is just a small part of her life and I‘m happy in that.


*This year our team, Alyssa's Army, will be walking in JDRF's event, Walk to a Cure at Elon University in Burlington, NC.  If you would like to make a donation to our team, you can do so through the link below.

Alyssa's Army Walk Page 

 

 

It's walk season.... Fundraising ideas

We have so many fundraising events that will benefit this year's walk. Of course we have the online donating through JDRF's walk page. We had a fundraising yard sale a couple weeks ago that was successful. Currently, we have 2 catalog/online shows going with Pampered Chef and 31. Next weekend some friends of ours are hosting a pig pick in' fundraiser. We asked one of our company's suppliers and they agreed to sell JDRF sneakers and another hairstylist friend is donating a portion from each client for the month of September. Our church also has been extremely generous with love offerings and donations for our yard sale.

With a little less then two weeks to go, I do not see how we can not reach our team goal of $3500!!

First day of school

With the first day of school came a new diabetes schedule. Left behind were the late nights and sleep in mornings. We started the new schedule a few days before school started, but I still knew the lazy days of summer that fit her current diabetes protocol was sure to change with the active life of a new 4th grader. I knew she would be more active so the morning of the first day I reduced her fast acting insulin. Mid morning she had her provided snack, but at lunch time a bg of 70. 2nd day of school, reduced insulin even more, usual snack and a lunch bg of 63. On the plus side, bg's have been normal at dinner which means her dose is good at lunch as well as the carbs in her afternoon snack. Tomorrow I'll make another reduction to see if that helps with the low blood sugar at lunch.

Going back to school

School starts 1 week from today, so I broke out Alyssa's most recent diabetes plan and starting filling out the paperwork for my meeting with the school nurse on Thursday. I will also give a brief training to her teacher on what to look for with Alyssa. The teacher will be attending a diabetes class provided by the school that usually happens sometime during the first week of school as well. So, this little training session is just so she knows what to expect the first few days of school.

I purchased enough snacks to last a month for the teacher to keep in her room as well as several juice box packs to treat lows. I've started getting her diabetes bag ready that stays in the office that will contain her meter, strips, syringes, glucose tablets, alcohol swabs and insulin. Ideally I would have liked for Alyssa to be on the pump before school started, but at least we have the ball rolling.... hopefully final approval in the next couple of weeks!!

Airport Security

The start of this trip reminded me of the Griswalds..... We were an airport security train wreck. I was so concerned with letting security know about Alyssa's diabetes supplies that forgot to remind her to remove her laptop from her bag and to toss her bottled water. So that was a little hold up...

I packed all of Alyssa's supplies in a little bag cooler. Inside was also a 4-pack of juice boxes and the security officer told me they needed to be less than 3oz umm no...4oz is 15 grams of carbs. I cleared it all up, she swabbed the juice and after running everything back through the scanner, we were on our way.

Overall, not too bad for Alyssa's first time flying since diagnosis. I'll be better on the return flight!

Getting ready for vacation

We are nearly packed for vacation. This is Alyssa's first time flying since her diagnosis. I got a letter from her endocrinologist and packed double the supplies we will need for the week long trip. I'll let you all know how it goes on Wednesday :) This afternoon, we even had time to hit the nail shop... Key West here we come!

Treating Lows

When I ask Alyssa what it feels like when her blood sugar is low, she says that she feels like she's shaking and her heart feels like its going to beat out of it's chest.  What I notice when she's low is that her face pales and although she's cool to the touch, she breaks into a sweat.  Also, her pupils dilate and her speech is affected.....it appears as though she's drunk.  Last night, just before bed she came to me and said she was low.  She was already treating herself with a juice box, as she had checked her sugar and it was 34!!  I sat her down and retrieved the Smarties from our supply cabinet and gave her a few of those after she finished the juice box.  This is always a touchy time because there is always the chance she'll lose consciousness.  The 15 minutes before re-check seems to last forever.  Then just as quick as the low came on, the color starts to return to her cheeks, her words become clearer and she says she feels better.  Re-check 92.  I gave her 4 peanut butter crackers.  At about 2:30 a.m., I checked again.....bg of 187. 

She had an 1 1/2 hour cheer practice earlier that evening, but her bg's were good before and after.  And what was crazy, was that at this time she was just playing on the laptop, nothing physical. She had a normal bg before dinner and ate really well.  Ughh....unpredictable!!

Dawn Phenomenon and Pump News

Alyssa has experienced high blood sugars in the morning for the last two weeks or so.  High for her morning level is anything over 150.  As I have mentioned before, Alyssa's blood sugar usually drops about 100 over night.  So my goal is to have her sugar somewhere around 200 at bedtime.  If her glucose level is below 200, she'll have a bedtime snack and if it is close to 200 she will not.  What was odd, I was seeing high blood sugars in the mornings and even after the nights she didn't have a bedtime snack.  Could this be the 'dawn phenomenon' I've been hearing about?

Dawn phenomenon is the term used to describe early morning (usually between 2a-8a) high blood sugars in diabetics.  It is thought that the body releases hormones over night, like the growth hormone and cortisol, that cause insulin resistance.  Alyssa takes Lantus in addition to Novolog, which is a slow release insulin that normally works for 24 hours.  I've heard though it can often be unpredictable with schedule changes.  Of course other reasons can be incorrect dosing of insulin or eating too many grams of carbs before bed.  In my opinion, I think it is tied to activity level as well. 

What this means?  I will again be waking at 2 in the morning checking blood sugars to see if there is a rise in the middle of the night for a few days and see if adjustments need to be made to her diabetes plan.

Pump news: We looked at 4 insulin pumps the other night.  It was really cool because Alyssa got to touch them and see how they worked.  After the pump class, I read all the information and narrowed down to either the Omnipod or the Ping.  We have chosen to go with the One Touch Ping.  I really thought Lu was going to push for the Omnipod because it is tubeless and stays on, but she liked the Ping best.  The cool thing is that it is 100% waterproof and Alyssa also liked their infusion sets the best, which are easily inserted and come in different colors :).  So yesterday, I faxed all my insurance info over the the rep and we have started the process.  Next step will be to see how much they will cover!

http://www.animas.com/

Carb Counting Basics

I know I have written several posts about carb counting, but because diet is probably the most important aspect of managing diabetes, I don't think it can be covered too much.  Understanding carbohydrates helps determine which foods affect blood sugar and how much insulin should be given for the food eaten.

The 3 main nutrients in food: proteins, fats, and carbohydrates all affect blood sugar levels; however carbohydrates is the main effector.  After carbs are eaten and digested, they become glucose and enter the bloodstream.  This causes blood sugars to rise and insulin is required to move the sugar into the cells for energy.  Some might think that carbs are bad; but in reality, they are the body's main source of fuel.

Foods that contain carbs are: starches (Breads, starchy veggies), fruits, milk products, and sweets.

Estimating carbohydrates can be done based on serving sizes (some call carb choices).  On average 1 serving size will have about 15 grams of carbohydrate.  This method is best used when there are not any food labels or when eating at a restaurant.  Examples of carb choices are: 1 slice of bread, 1/2 cup of corn, 4 ounces of juice, small apple, 8 ounces of milk.  Each of these would be considered 15 grams of carbohydrate.

Counting grams of carbohydrate is much more precise.  Reading food labels and meal planning books are the best way to count grams of carbs.  I recommend the book, Calorie King.  When using this method, food is measured and then the carbohydrates are calculated.  When reading food labels, its important to determine how many servings you are going to eat and then multiply that by the grams of carbs per serving. 

*Watch out for products that say they are "Sugar-Free" or "No Sugar Added".  Just because a product is sugar-free doesn't mean its carb-free.  So always check the grams of carbohydrate.

Pump Class

Looking forward to going to play with the different insulin pumps this afternoon with Alyssa. Look for a post about the experience as well as the next step, insurance :D

A Great Weekend

Riding 4 wheelers through trails and mud and puddles was not something I thought I would ever do. I wouldn't say I'm a girly girl, but I never really saw the need to play in the mud. Alyssa on the other hand is very versatile. She likes being a girl, playing with makeup, painting her nails; but she also likes playing with toy cars and out in the dirt.

So, yesterday, I agreed Lu and I would go with the boys to Busco Beach, an ATV park a couple hours from home. Alyssa love it and I have to say I had a lot of fun too! She rode a lot on her own and has gotten really good. My sons Phil and J are fearless and they got a kick out of mom's screams as we went over ramps and through the mud.

For the most part diabetes behaved. We had one low towards the end of the day and honestly four wheeling is a lot of work, so we checked periodically and stopped for extra snacks.

All in all, it was a great day with the family filled with some great memories!

What is A1C??

I have had several readers ask, "What is A1C?"

Of course, prior to Alyssa's diagnosis, I didn't know either.

Basically, A1C is a blood test that reflects patients blood glucose levels for the past 2-3 months.  Specifically, the A1C test measures the percentage of hemoglobin (the protein in red blood cells that carries oxygen) that is covered with sugar.  The higher the level, the higher average of blood sugars and the higher the risk of complications.

A normal A1C is between 4.5-6%, which means an average of 80-135 mg/dl (blood sugar levels).  An A1C 6.5 or higher indicates diabetes.  There is also pre-diabetes which is an A1C of 5.7-6.4%.  For most adults with diabetes, the ideal target is an A1C of 7% or lower (average bg's 170 or lower).  With children, the target is 8 % or lower (average bg's 205 or lower).

Changes

The endocrinologist made a few changes to Lu's regimen because her hemoglobin A1C had gone up .2 since our last quarter visit.  Yesterday was the first day of the dose change and also her 3 hour cheer practice.  I was a little nervous to give her the higher doses with breakfast, but didn't want her to spike before the 10:30 practice time.  Her Lantus was increased from 9 units, to 10 units and her Novolog rate was increased from 1 unit for every 20 grams of carbohydrates, to 1 unit for every 15 grams of carbohydrates.  I gave her the updated dose with breakfast at 7:30 and on the way to practice, checked her blood glucose levels.  258 at 10:15.....we are back to those post breakfast spikes where the insulin is taking a little longer to kick in.  Practice immediately started with warm-up and practicing jumps.  After about 20 minutes of that, they started tumbling and that lasted about 30 minutes.  At 11:30, we did a recheck of her bg's and she was at 115.  She had a snack, apple slices, peanut butter crackers and low-calorie Gatorade.  They practiced their competition routine and around 1:00, she gave me 'the look', which I knew meant that she didn't feel good.  Re-check, bg's 62.  Quick juice and a snack and the timing was good because the team decided to take a break.  10 minutes later,she perked right back up and finished practice with energy left over.

Dum Dum

On my last visit to the pharmacy to pick up Alyssa's diabetes supplies, I decided to go through the drive thru. I told the lady behind the glass that I need to pick up my daughters prescriptions, gave her date of birth and confirmed our address. Alyssa was in the seat next to me and the pharmacy tech waved at her. We chatted for a few minutes about the heat (over 100 degrees that day) while she rang everything up. It takes a few trips through the pass through because of the boxes of syringes. On the last pass, I opened the door to the pass through and beside Alyssa's bag of insulin was a Dum Dum lolly pop. I just smiled. And yes, Alyssa ate the sucker later!

Pump talk

As I've mentioned before, I've been hoping to talk Alyssa into getting the pump. I know it seems to be an easy decision because she would go from 4 injections of insulin a day to changing the pump site every couple of days. However, I also know the idea can be quite scary and she already has to deal with so much. That is why I've never really pushed it, I just hoped she would show me when she was ready. This morning we went out for breakfast and the topic of getting a pump came up again. She showed a little more interest in the pump this time and said she would try it :). Fortunately, tomorrow is our appointment with the endocrinologist; so, we'll see how it goes!! There are several steps before we can start using the pump, but I'm excited we are on the way!!

Sneaky Sneaky

Having diabetes stinks and I think it does even more so for a kid.  For the most part Alyssa manages her diabetes very well, knowing that she needs to check if she can have something before she puts it in her mouth.  I try not to keep the joys of sweets from her, my theory is anything in moderation.  She knows that even if she can't have a sweet at the moment she asks, she can save it for later when she can.  This decision is based on her glucose level, how soon it is to a mealtime, her activity level, and the amount of time before she goes to bed.

Yesterday with dinner she asked if she could have a low-sugar Klondike ice cream bar.  The dessert has 25 grams of carbohydrates and so I said that she could have it for desert after she ate her dinner.  With the ice cream, her dinner total came to 75 grams of carbohydrates (Normally 60).  Before dinner her blood glucose level was 144 (good).  Her insulin ratio is 1 unit for every 20 grams of carbohydrates, and because her bg's were good, no correction was needed.  So I gave her 3 1/2 units of Novolog.  All was good. 

At her bedtime glucose check her level was 166 and if they are under 200, she has a night time snack that is 15 grams of carbohydrates to balance her blood sugar level through the night.  She normally handles this on her own, and I'll call out to her, "What's your sugar?" she usually tells me what it is and I tell her if she needs a snack or not.  Well, I told her to get herself a snack (she has her own cabinet full of snacks all that are 15 grams of carbs or less)  However, miss flossy decided that she wanted to have another ice cream bar.  So, I'm in my room on my laptop and I hear my husband ask Alyssa if mom said she could have this ice cream?  "Alyssa!!" She had taken one bite.  Anyway, I had her wrap it up, promising she could have it the next day.  Diabetes is tricky and nights can produce dangerous lows or highs depending on her level of activity and pattern of bg's for the day.  That is why I choose to give her 15 grams of complex carbohydrate snacks that include protein before bedtime instead of sugary treats that can cause spikes and morning highs.  

I know it's tough to not be able to eat what she wants anytime she wants, and trust me, she didn't forget what I told her as she had her ice cream bar with her lunch this afternoon.

What is insulin?

Insulin is a hormone produced by the beta cells of the pancreatic inlets of Langerhans.  Insulin is secreted into the blood in response to the elevation of blood sugar levels.  Insulin then causes an individuals cells to absorb glucose from the blood and store it in the liver and muscles of the body so that it can be used as energy.

More than diabetes....

Alyssa is a beautiful, active, silly, sassy 9 year old girl who just so happens to have type 1 diabetes. She is so much more than a diabetic....Alyssa loves to cheer, tumble, dance, swim, sing, read, give make-overs to her girlfriends, paint nails, and play with her cat, Cookie, and Chihuahua, Poppy. She would rather be outside than in... loves riding her bike and her brother's four-wheeler. If she must stay in, she loves watching music videos on YouTube and playing on Stardoll.com. Her favorite color is green and she loves all things that glitter.....

"Hey I'm a wildflower, growin' in the sunshine
Soakin' up the way of life I was raised in
Runnin' barefoot bloomin' in a summer shower
Ponytail dancin' I can't help it, I'm a wildflower"
(Jane Dear Girls)