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 

 

 

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.

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!!

The D-O-C

When your child is first diagnosed with diabetes your world is set into a spin, especially if you have no previous exposure to the disease.  In my case, my step dad was diagnosed when I was in my early teens and I had gestational diabetes when I was pregnant with one of my children.  So, I had a little understanding of the physiological aspect of type 1 diabetes.  However, when my daughter was diagnosed I still felt like a steam roller had flattened me.  My new job was going to be her artificial pancreas.  I was going to have to measure and calculate what she ate.  I was going to need to determine the amount of insulin she needed based on her blood sugar levels and consumption of food; all while being sure to account for her physical activity.  I wasn't sure if I was the best person for this job.  What if I messed up?  What if I made a mistake?  And then there was the fact that our entire lives were flipped upside down.  This disease affects the entire family.

We were and are very fortunate to have a supportive "village" that immediately jumped in to help us make sense of this situation.  But what we needed too were other families who lived with this disease, who had been where we were.  I began to search the Internet for more information about living with this disease and stumbled across a mother's blog, D-Mom, The Sweet Life with a Diabetic Child.  I read her current and older posts.  Her blog led me to another d-mom's blog, and so and and so on.  Their blogs also led me to Facebook groups and Twitter events.  This is the Diabetes Online Community (#DOC).

Connecting with the DOC helped me know what to expect when my daughter returned to school after her diagnosis, helped me figure out what a 504 plan was, and led me to volunteering and advocating...they led me to start this blog.  From the DOC I've gotten advice, support, and understanding from other parents who live similar lives.  From the DOC, Alyssa has built relationships with other children who are like her....who have to prick their fingers and take injections and who feel bad when there sugar levels aren't just right.  (And they've helped us choose what pump we will get)

If you or your child is newly diagnosed, my advice to you is to connect through blogs and social media with others who have been where you are.  I'm sure glad I did!

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/

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

Type 1 Diabetes...need more snack ideas

Choosing snacks for Alyssa is an ever evolving task. Being a child with type 1 diabetes, high energy, high metabolism, and one who could previously eat anything she wanted....means mom had to become very creative. Her snacks need to be around 15g of carbohydrates to keep her blood sugars level.  I always keep sugar free jello, sugar free popsicles and cheese sticks on hand, as they are low carb alternatives when Alyssa’s hungry between snacks or meals. She loves vanilla flavored yogurt and a serving of the light is 14g of carbs. All the little 100 calorie snack packs have somewhere between 14-17g of carbohydrates and there are tons of varieties and great when you're on the go. It also gives her a chance to have chocolate chip cookies in mini size :). Sugar free jello pudding, ritz bits peanut butter snack packs, gold fish snack packs and 4 to a pack of peanut butter or cheese crackers are all 15g of carbs or less too. If she experiences a low blood sugar, I usually give her a 4oz. juice box followed by a protein/carb snack of cheese and crackers or cheese and a few grapes or apple slices. She has 3 snacks a day and who would want the same thing over and over? Therefore, I am always on the lookout for new snack ideas.




(An updated version of a early post).

Counting Carbs

Counting carbohydrates can be quite difficult when your type 1 child eats something that doesn't have a label.  This week, Alyssa has been going to vacation bible school and the first thing they do is eat dinner.  The first day was pizza, applesauce, Oreos, and a Capri Sun (I brought a Capri Sun Roarin' Water because it only has 8g of carbs compared to the 22 in regular Capri Sun).  I knew a regular applesauce cup has about 22g of carbs, at least the brand I buy does.  I knew a regular slice of pizza has about 45g of carbs.  The Oreos were 25 g of carbs for a 3 cookie serving, but she only ate 1 of them.  Adding it all up in my head....this was a total of about 83 grams of carbs which would normally mean a basal rate of 4.15 units of insulin.  However, I knew she was going to be running around like crazy for the next few hours and burn up a lot of those carbs, so I decided to give her 3 units of Novolog.

At the end of VBS, blood glucose check read 212 (honestly, I thought it would be lower, but not too bad).

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.

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!!

Summer Schedule

I remember when I was a kid, the thing I looked forward to most during summer vacation was staying up late and not having to get up early in the morning. But when you have diabetes, its important to stay on a schedule. I have to admit, over the past several weeks we have slept a little later each morning so that now we get up between 7:30-8 as apposed to the 6:00 am alarm when school was in. And Alyssa is going to bed around 10:30-11 pm, when her school year bed time is 8:30-9... well she usually falls asleep somewhere around that time and we put her in her bed :)

I knew last night Alyssa had stayed up later than usual watching a movie. I woke up at 7:40 this morning, pricked her finger (she slept through it) blood glucose level was 147. I made her breakfast (3 little pancakes, sugar free syrup & a cup of milk is exactly 60 grams of carbohydrates), walked her sleepily into the kitchen and she started eating as I made her injections. I gave her her Lantus and Novolog and then proceeded with making coffee and cleaning up the kitchen. When I turned around, I noticed that Alyssa wasn't at the breakfast bar, so I went looking for her and this is where I found her.......

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)

 

Diabetes doesn't define who you are....

Today was our church's Memorial Day Service.  This is a service where family and friends honor those who have passed on during the last year and a special guest speaker talks to the congregation about life and death and how we, as Christians, should not take for granted the time we have before we go on to glory.  This year's  guest speaker's subject was "Who are you?"  He believes when most people are asked this question, their first response is their name and then their profession when describing who they are.  His hope was that the congregation would see they should define themselves as how they live their life through acts and service for others.....as a child of God.  A person is more than their name; more than what they do for a living; more than some one's spouse or some one's parent or child. 

This question got me to thinking about my daughter and how many may think her disease defines who she is.  My daughter has type 1 diabetes, but that is not who she is.  Diabetes is just one part of her life.  Although, the disease can be overwhelming and attribute to how she feels, it is important to remember that this does not decide who Alyssa is or who she is going to be..... if anything, diabetes will make her stronger.

Alyssa's Birthday!!

Alyssa celebrated her 9th birthday this past Friday on June 15th.  The first thing she said that morning was that she wished she didn't have to have diabetes on her birthday.  So, it became my goal to keep diabetes from the forefront.  We had a fun day hanging at the pool with friends.  I knew she would be swimming and running, so I let her eat anything she wanted.  (Of course I kept the meter close by :)).  But she had mini cupcakes, Doritos, chocolate pudding; and, crackers, ham, and cheese.  When we left the pool, bg was 112!  So we stopped at McDonalds for a happy meal where she had a burger and fries and an injection.  That evening she had a few friends sleep over so, we went out for pizza.  Bedtime bg was 200 even!  What a great day!

Now, her party was the following day and her bg's were a different story.  They started off well in the morning, but by the time of her party at 3 pm, she was around 80 ( a little low for her in the afternoon).  She had several friends over and I'm sure her low was because she was so active.  They played on the slip 'n slide and in the jacuzzi.  When it was time for cake, Alyssa went in to change out of her swim suite and it seemed to be taking her a long time.  I went in to check on her, and she was incoherent.  She was trying to put her dry clothes on top of her bathing suite and when I asked her if she was ok, she said she was very tired.  She was very pale and her eyes seemed to be in a daze.  After she answered me,  she immediately started crying.  I knew she was low.  I grabbed a juice box, a container of frosting, and her meter.  Luckily when I stuck the straw in her mouth she began to drink the juice and I checked her bg..... 30!!  That's the lowest I've seen it.  She quickly finished the juice and I started taking finger fulls of icing and putting in her mouth.  In just a few minutes I could see the color coming back into her face.  I helped her get dressed and held her....she continued to cry...she was scared and so was I.  Ten minutes later, bg's back up to 90!!  Relief!!


(We had 2 cakes, this one Alyssa and her friend decorated)

We went back out on the porch where our family and friends were waiting for us and I said, "take 2!"

Mother of the Year

I do not know what has been wrong with me this week.  Maybe my brain fog has been caused by the leftovers of my sinus infection last week or from my new diet I started this week??  Or maybe its because I've been scrambling around getting everything in before the deadline for my new school that I will be attending in the fall.  It's been an interesting week for sure.... I hit my oldest son's truck pulling out of my driveway, I got stung by a bee, I did something to my hand....and then the winner this morning....

My son Jamon rides to school with a friend, so I drop him off on the way to Lu's school.  As I pull out of their driveway, it hits me, Alyssa didn't get her insulin!  Really?  Like she hasn't been getting insulin every morning for the past year and a half? The injections were made, it just totally slipped my mind.... I whipped the car around and headed back towards the house....arguing with my self.  How could you forget?  Remember, you are human.  Alyssa gets two injections in the morning, Lantus (a slow release insulin) and her quick-acting insulin, Novolog.  Normally, she checks her BG and I go ahead and give her the injections before she eats.  This morning though, her bg was 86, and because the Novolog usually drops her sugar pretty quickly,  I decided I would wait until she had eaten her breakfast to give her the injections.  I'm apparently not good with a change in protocol.  Ahh the anxiety...  

Anyway, we rushed home and I quickly gave her injections and we were back on the road to school.  And, we made it on time!  Hopefully there are not too many more mornings like this...not good for my inner control freak!

Diabetes Blog Week: One Great Thing 5/15/2012

Managing Alyssa’s diabetes is a lot of work and I do find that I become obsessed with glucose levels and calculating everything that she puts in her mouth.  It can become the center of your life; like many D-moms, Alyssa’s diabetes is the first thing I think about in the morning and the last thing I think about at night. 

There are many times I feel overwhelmed and get frustrated when her numbers aren’t good or when she suffers with a lows.  And then I remember I’m not the one with the disease.  What I do try to remind myself is Alyssa is a child and she just wants to be like every other almost 9 year old. 

It’s impossible to be perfect, but there are many things that she does spectacularly!! Alyssa knows when she isn’t felling right and she will immediately go for her meter and check her BG and she’s not embarrassed about it…she’ll pull it out anywhere.  If it’s low, she goes for a juice box and a lot of times she’s treating her low before I even know what’s going on. 

This has helped lift some of my fear—I don’t stress as much when she’s playing outside or when she’s at cheer practice because I feel confident that she knows to address any change in how she feels right away.  More importantly, this has given Alyssa the opportunity to be more like other kids her age.

Diabete Blog Week: She needs no introduction

Most of you probably have read her blog, but I had to mention that D-Mom Blog: The sweet life with a diabetic child was the first blog I read (and I still read) after my daughter was diagnosed a year and a half ago. Her blog helped me prepare my daughter to return to school after her diagnosis—as most of us, I was at a loss.  I’m not sure I would have survived the chaos without it! 

Our daughters are close in age and I find that I relate with many of the diabetes related issues she writes about. I read all of her posts on her blog and follow her Facebook page. She provides an amazing amount of information and if I’m not sure about something, I look at her older posts for the answer because I know she has already been where I am at. 

For the few who have not read her blog, I recommend D-mom, whether your family is new to type 1 diabetes or not.