Pump Update

Well, this week we got the results from Andrew's first A1C after starting the pump.  The results are 6.1!!!  I was actually surprised since it was 6.7 right before we started the pump.  I have seen some rising numbers, but the pump is knocking them down right into place.

I cannot say enough how much we are both enjoying the pump!  The things that the pump can do is simply amazing.  We used our dual wave the other day for the first time when he ate pizza.  A dual wave allows you to give 1/2 the insulin upfront and then the other 1/2 over 4 hours.  Any diabetic will tell you that pizza is usually a nightmare when it comes to blood glucose numbers.  It tends to spike your blood sugar hours after eating it.  If you give all the insulin up front, you run the risk of going low.  Having the ability to spread it out over several hours helps tremendously.

If anyone reading this is debating whether or not to go on a pump, I give it 2 thumbs up!

Going Live!

We had four families in our pump class this morning.  Two chose Medtronic, one chose Animas, and one chose the new T-Slim.  I have to say that the new T-Slim is REALLY sleek looking.  I can see that pump being very popular with the teens since it looks like a cell phone.  It would be very discreet when dosing.

One of the mothers was telling me that her, her daughter, and her son all were diagnosed in 2012 with diabetes all within 6 months of each other. WOW!  I cannot even imagine coping with that all at once.

When the meeting started, we had to provide the nutritionist with the amount of carbs that we would like to set for breakfast, lunch, dinner, and snacks for the next week.  We only have a +/- 2 either way.  This will help to keep things consistent and give us a better feel when making adjustments.  I have to call in to the hospital with numbers each morning and call immediately if Andrew has more than 2 lows in one day.

Well......of course.........our first blood sugar check 2 hours after starting the pump was a low of 54!  We were able to treat and enjoy a lunch out on the town.  Andrew had a baked fish sandwich on a gluten free bun, steamed broccoli and a glass of milk.

Our afternoon test was 80, so we'll see where it goes.  It's anyone's guess when it comes to diabetes.

Starting from scratch....AGAIN

Andrew has had diabetes for over 2-1/2 years now.  He's been on daily injections from the beginning.  Since he enjoyed an AMAZING honeymoon and did not require long acting insulin, the pump was not something we needed.  That was until now.

We chose the Medtronic 723 pump.  The Medtronic rep came to our house last week and explained everything.  Everything was ok until we had to physically attach the infusion set to him.  He didn't like the feel of it and proceeded over to the sofa where he started to softly weep. My heart just broke in two.  It wasn't because it was uncomfortable to him (though that matters too), but it was because he is now required to have this piece of equipment attached to him 24/7.  That, along with the "unknown" when we go live with insulin next week, brought me to tears.

Starting the pump makes me REALLY nervous!  I know the pump does all the calculations for us, but the thought of leaving my son's life in the hands of an electrical device makes me very scared.  What if it malfunctions and delivers too much insulin?

The only thing I know to do at this point is give it all to God.  Please pray for guidance and protection over Andrew as we enter our "new" diabetic journey.  We go live with insulin this upcoming week.

Introducing our New Pump!

MiniMed 723

We are pleased to announce that we chose Medtronic for Andrews 1st insulin pump.  We really struggled between the Animas and the Medtronic.  There were two things that helped to make our final decision:

• the Continuous Glucose Monitor option available on the Medtronic 
• how you bolus.  The main thing I did not like on the Animas is that you had to manually enter the bolus amount. I had visions of 2.5 turning into 25.

All of the insulin pumps have wonderful options; therefore, it's really up to the individual using it.  I just wish I could pick and the choose the options I like from all of them and make my own custom pump.  

We will be starting with saline in a couple of weeks before we go live at the end of July.  I will keep you updated on our progress. 

Was it the Vaccination?

Last night I awakened suddenly in the middle of the night with the thought of Andrew's recent vaccinations.  If you've been following my blog, you know that Andrew had a wonderful 2-1/2 year honeymoon.  He was on extremely little amounts of insulin and NO long acting insulin.  The doctors  kept saying that he was definitely an unusual case.

That was until....a couple of days following his meningitis and TDaP vaccinations.

After those vaccinations, his blood glucose numbers went crazy!  We could not get him under 200 in the mornings. Remember, this was after 2-1/2 years of being under 120 upon awakening and having NO long acting insulin.

Needless to say, we are STILL struggling to get his blood glucose ratios figured out.  People might say it was a coincidence, but I don't believe in coincidences.  It is so puzzling that he would go from such a mild case of diabetes to full blown diabetes over night.

Did those vaccinations kill off the rest of his pancreas?  I can't prove it, but the numbers don't lie.

It's Pump Time! NEED ADVICE

Well, it seems to appear that Andrew's honeymoon has come to an abrupt stop.  We made it 2-1/2 years which I am completely thankful for.

We started on Levemir about 2 weeks ago and though it's helping, I am definitely in shock seeing numbers up in the 200 and 300's.  Insulin to carb ratios have been changing daily.

With constant corrections having to be made, I am looking forward to moving towards a pump.  We have a pump class next week and I'd like to get as much information I can before attending.

Can you all please share with me what pump you/your child uses and why you chose it.

Thank you!!!!!!!!!!!!!

Is it over?

the diabetic honeymoon........

They definitely call it a diabetic honeymoon for a reason.  Andrew has only been on a small amount of quick acting insulin for the past 2-1/2 years.  His numbers have remained under 150 for the most part.

Until.....

The past 3 weeks have included endless days of 200's and 300's.  I'm dosing insulin like crazy and giving corrections that are not bringing his numbers down.

Is it over????

Weather and Blood Sugar Levels

Our weather has been crazy the past couple of days due to the path of Hurricane Sandy.  We're not going to get snow, but are expecting large amounts of rain and high winds.

Yesterday, Andrew's numbers went up to 248 which NEVER happens!  He didn't eat anything differently and received his normal amount of insulin.

I'm wondering if this change in his blood sugar levels could be from the temperature changes?  Does anyone here experience a shift if blood sugar levels when the weather shifts?

Please pray for everyone that is in the path of this storm.  I'm sure there will be a lot of flooding and power outages.

Punch in the gut

Tonight at VBS the kids played a game of question/answer so they could get to know each other better.   All of the kids made a large circle and passed around a beach ball with questions on it.  Whoever caught the ball had to answer one of the question where their thumb was sitting.

Andrews question was "If you could go backwards or forward, what would you change?"

His answer: "I would go backwards so that I would have never gotten diabetes and celiac."

PUNCH TO MY GUT!

It's like no matter what, diabetes is ALWAYS in the picture.   One thing I'm extremely thankful for is that he is not embarrassed of his diabetes.  I've always been open with his testing and shots.   He lays all his stuff out during snacks at VBS and I give his shot right there.

The kids in his VBS are kids that he's known for sometime now which softens my heart because they don't judge him.  They accept him for who he is......ONE AWESOME KID!

Aren't we on the same page?

phone rings:

me:"hello"

American Diabetes Association (ADA): "Hi Mrs.?, this is so and so from the ADA.  Do you know that  (insert #) people die each and every year from the complications from diabetes?"

me: "yes, I'm completely aware since my son has type 1 diabetes."

You would think that at this time, the ADA would apologize and go on with their spiel, but NO!

ADA:  We're looking for donations.

me: I do support diabetes, but I directly donate to JDRF since our son has type 1.

ADA:  Get's disgusted and snippy with me while asking again for a donation.

This went on for a couple of times until I finally had to tell them to take me off of their calling list.  Why did it have to come to this?  Aren't we all still working towards the same thing - finding a cure for diabetes?

Mom, I don't.........

We went to see the new Madagascar movie with the kids the other night.  I would highly recommend the movie as it was very colorful and funny.

After the movie, we decided to drop by TCBY for some yogurt.  Andrew was not happy with that selection because the only celiac safe topping was slivered almonds.  After the rest of us got our TCBY, we hopped back in the car and journeyed off to Houlihan's for a gluten free creme brûlée for Andrew.

My little guy kept complaining that he was going to die because he was soooooo thirsty.  When I picked up the creme brûlée, I requested a large glass of ice water.  This cup must have held 4 cups of water.

Back to the car, my little guy guzzled that thing down like nobody's business.  He has been very thirsty for water lately.  I have to admit that one of my "diabetes" antennas have started to tune in.

As we're proceeding down the highway, my husband simply states, "Little guy, you have been drinking a lot of water lately."

Little guy's response:  "....and Mom, 'I DON'T HAVE DIABETES!!!!!!!'

Obviously, the siblings have their own "diabetes" antennas.

The Scary Times with Diabetes

Diabetes and celiac disease has been a part of our lives now for 1-1/2 years.  They've gone along with us to doctor appointments, vacations, road trips, restaurants, grocery stores, clothes shopping, swimming, gymnastics, school, piano lessons, Awana, church, play dates, movies, bike rides, walks, trampoline, amusement parks, etc.......

The point is that Andrew's diabetes has always been controlled in MY presence.

A couple of weeks ago our daughter came down with stomach pains that required a visit to the local Children's ER.  We just couldn't leave Andrew in a family members hands due to his insulin shots and celiac needs.  Diabetes is just not something that comes with Cliff Notes.  My husband could have stayed home with Andrew and his brother, but he wanted to be there for his daughter too.  So, everyone loaded up in the car.

This is the first time that I felt.....scared.  Scared of the huge responsibility on my shoulders to take care of our son.  Diabetes kicked me smack dab square in the stomach!  I know that eventually Andrew will take on complete responsibility for his diabetes care, but he's not at that point yet.

For now, I have to remind myself that I cannot control diabetes and the sticky situations that it sometimes puts us in.  As for the what if's....... I need to give them to God.

Surviving Gluten Free at Hotels

Staying in a hotel can be extremely challenging for people with celiac disease.  Most hotels offer a buffet where there are too many opportunities for cross contamination.

I did several things to keep our son safe during our hotel stays.

• I purchased some Toast it bags before we left.  Make sure that you definitely buy more than a 2 pack.  At one hotel, I had sat them down on the table and the person cleaning the dining area picked them up and threw them away.  Also, you might want to check with the hotel before you go to make sure that they have a regular toaster available.  A lot of hotels use the kind that you place the bread on a little conveyor belt and it drops to the bottom when it's done.  If this is the case, the toaster bags cannot be used.  

There was also a time when the employee had to take the bags into their kitchen to use the regular toaster.  I had to reinforce them that the bread stays IN THE BAG and to not touch the inside of the bag.  Keep in mind that it might take more than 1 time in the toaster to get it toasted to your liking.

• I made sure that I could have a refrigerator and microwave in our room.  Before we arrived at the hotel, I located a nearby grocery store and purchased a small carton on eggs and a bag of shredded cheese.  Prior to the trip, I purchased a plastic microwave omelet container like the one shown below.  If you will not have a microwave in your room, I would check to see if there would be one that you could use.  Make sure you pack a little bottle of dishwashing liquid to wash it when you're finished.

• At the grocery store, I also purchased a quart of milk for cereal.  I packed a box of Rice Chex, Splenda and plastic silverware.

• Since Andrew has diabetes, I also packed some measuring cups and a food scale.

Diabetes at Amusement Parks

I have to admit that I had a lot of anxiety before entering Busch Gardens.  Andrew is a HUGE lover of roller coasters and I had visions of him having a low being hundreds of feet off the ground.

Before we entered the park, we visited their Guest Services and asked if they offer anything special for diabetics.

YES THEY DO!

They take down some of your information and then present you with a paper that you are to show their employee at the entrance of the ride lines.  The employee will tell you what time to come back.  When you return at your designated time, they shuttle you into an express line that puts you toward the front of the line.  I think the longest we ever had to wait was about 15 minutes.

This is a wonderful privilege!  We didn't have to worry about getting out of line to hunt down a restroom due to a high blood sugar. We also didn't have to worry that he would go low due to waiting too long.

If you are planning on visiting any amusement parks over the summer, be sure to check with Guest Services upon entering and see if they offer a special pass for diabetics.

The UPS and downs

We made it through another one of Andrew's diabetes appointments.  I have to admit that I never enjoy going because the doctor is always harping on keeping his weight down to extend his honeymoon.  I understand the doctors viewpoint and I agree with her, BUT it's tough hearing about it all the time.  He has kept his 17 pounds off for 1-1/2 years now.  I'm so proud of him!

We had an intern doctor, a diabetic, see us before our regular endo..  He was able to teach Andrew to test the sides of his fingers versus the pads.  I have been telling Andrew this for a long time now, but maybe a diabetic doctor will help since he understands first hand.

Andrew is still having lows about 3 hours after he eats so we need to add in a free carb serving (15g) at 2 hours following every meal.  The lows are causing ruckus with exercise.  I'm going to sporadically check his glucose in-between meals to see how high he's spiking.  We might have to change his insulin ratio.

I don't know about you all, but I feel that I have to micro manage everything diabetes related!  The doctors read the glucose numbers and proceed to ask me what he ate and when he ate it.  I just cannot let myself get so wrapped up in the numbers.  His current A1C is 5.1% so I know we're doing something right.  Diabetes sometimes just likes to throw odd numbers in the mix for no reason at all....probably just to tick us off!

Since Andrew's celiac antibodies are still not in normal range, they will retest them and call me with the results.  They have gone down significantly since diagnosis, but they're taking their good sweet time.

Overall, the doctor is happy with Andrew's progress.  I just wish I could walk away feeling happy and not discouraged.  I HATE that they constantly talk about him being overweight right in front of him.  If you would look at Andrew, he does not look overweight.  They go strictly on the BMI chart.  I think the BMI chart should be discontinued because not everyone is the same stature.  Someone with more muscle will show up as overweight because muscle weighs more than fat.  Hmmmmm.....I feel a possible excuse for my next doctor's appointment coming on!lol

Wordless Thursday

We NEED a cure!

Fun at Downtown Disney Orlando

Downtown Disney - Orlando

Our kids LOVE the Lego Store in Downtown Disney!  The above pictures feature displays completely made of Lego's.  There must be millions of them!  

For lunch, we visited Wolfgang Puck Express.  My husband and I enjoyed a delicious Margherita Pizza that had mozzarella and parmesan cheeses, tomato, fresh basil and tomato-basil-garlic sauce.   

Andrew enjoyed gluten free fish and chips at Raglan Road Restaurant.  I'm still in shock that we found gluten free breaded fish with french fries.  He absolutely LOVED them!  Disney really goes out of their way to offer gluten free options.  They were also helpful in getting carb counts for us.  Since I'm not used to guessing, it really was priceless information to us.

Andrew and his siblings had the opportunity to participate in a car race.  There was an area where they  constructed their own car creation from Lego's and then raced them down a ramp.  Whoever won the race got to keep their car.  Unfortunately, we were not winners.  They had fun anyway.

All the fun they had really worked up an appetite for dinner.  I had made reservations at Planet Hollywood prior to leaving for our vacation since they book up extremely quickly.  The food was good; however, the music is very loud!  We had to put some crumpled up napkin into our youngest son's ears.

As soon as we got in the car for our 16 hour car ride, the diet went right out the window.  When on vacation, you MUST have dessert!  We thoroughly enjoyed Ghirardelli and BabyCakes Gluten Free Bakery.  I will blog more about these later since they offered gluten free options which were AMAZING!

We're Back!

Off to Orlando, Florida

Well, we survived 2400 miles in the car round trip.  We had a blast and I'll be blogging about our adventures after I unpack and wash mounds of dirty laundry.  I think I need a vacation after our vacation.lol

Andrew's diabetes and celiac were definitely in tow, but remained manageable.  The hardest part for us was finding gluten free foods.  Sometimes we were sent on a wild goose chase for an hour just to find an acceptable restaurant.  He definitely had his fair share of bunless cheeseburgers since that was the most available gluten free option.

I learned one amazing lesson on this trip:  don't let diabetes define Andrew.  Yes he has diabetes, but it will never hold him back!  Andrew snorkeled with beautiful fish and stingrays, swam with dolphins, rode roller coasters with multiple loops, swam in the ocean, rode water slides and ate many SUGARY TREATS (because he can)!

Their smiles above are just priceless!

Still Pluggin' Along

Today was Andrew's endo. appointment.   He is still experiencing a beautiful honeymoon with his A1C at 5.0.  Even though I'm so grateful for this wonderful news, I have to admit that I'm scared deep down.

I know that one day, the bottom will fall out and his pancreas will go kaput.  I can feel the disappointment  now even before it happens.

Diabetes not only takes a physical toll, but an emotional one as well.  I think the emotional aspect can sometimes be worse.  Diabetes makes ME feel like a failure sometimes if I don't dose Andrew correctly or when it decides to spontaneously take a different pattern out of the blue.  I know that when the time comes for more insulin, I'll be beating myself up wondering what else I could have done.

One thing I know for sure and continue to remind myself is that God is BIGGER than diabetes!   Diabetes can bring us down, but only God can bring us back out of that self pity pit.

What gives?

As I was vacuuming today, I see it from a distance.....

A tiny used up glucose strip lying in the middle of the kitchen floor.

I started to contemplate just how that strip got from one side of the house to the other.  Did it jump out of the Sharp's container and sprint down the hallway from the bathroom?  Maybe it hitchhiked a ride on Andrew?

As I continue on my vacuuming expedition, I find another one hiding in the living room carpet! This is getting ridiculous.....how dare they parade themselves in front of me!  They know how much I despise diabetes, but they keep taunting me.

Something fishy is definitely going on around here and I need to get to the bottom of it.....PRONTO!  Keep an eye on traveling glucose strips as they're probably on their way to my house for a party.