The Adventures of the Traveling Backpack

I have been drowning in checklists and packing up the house for our 10 day adventure. Packing for a vacation when you're a family of 4 is a lot, but throw diabetes in the mix and you become a traveling pharmacy!

We are no doubt avid travelers both before having children and since having the boys. We pretty much know what and how to pack for the family and I have a mental checklist stored away, but once J was diagnosed I felt the anxiety all over again.
How can you plan for the unknown? How will traveling affect his blood sugars? What happens if we have an emergency situation and he needs to be hospitalized? Are we close enough to good hospitals and doctors? What happens if we run out of supplies?
Not to mention the amount of supplies that you have to bring with you, to be prepared for any situation!

This makes us look at traveling a little differently and have a plan B and C in the back of our heads just in case the unthinkable were to happen.

Last year we took our first long vacation out of the country with diabetes and that is where
The Adventures of the Traveling Backpack was born!

As parents of a diabetic, we now have to lug around a backpack of supplies with us everywhere we go. This backpack has his Insulin Pump PDM, Low Kit, Snack Kit, Glucagon Shot, Ketone Meter and Strips, Water Bottle and anything else that we might need.

So, today as we begin our 10 day adventure, I will be documenting our travels and experiences with The Adventures of the Traveling Backpack segments.
I am hoping it will be uneventful, but being on vacation with a 4 year old, a 2 year old and Type 1 Diabetes.......life is never predictable! Stay Tuned!

*To see more about "The Adventures of the Traveling Backpack" you can visit my Instagram and Twitter accounts (links are listed in the right hand column) or search #theadventuresofthetravelingbackpack on Instagram and Twitter.

A1SeeYa

Yesterday was J's quarterly visit to the Endocrinologist. This is always stressful for us as parents because they do the A1C test which tells us his average blood sugar over the last 3 months and is almost a report card as to how well you're managing T1D. This average will tell us how at risk he is for developing diabetic complications.
Every Endocrinologist is different but J's range for his age is < 8.5 and higher than 7 to avoid having too many hypoglycemic episodes, as those are the most dangerous for small children.
It is a very delicate balancing act!

Since J's diagnosis a little over a year ago, we have always been within his recommended A1C range until......we went on the pump in December! At his A1C check in January he jumped up to a bit above the threshold. We felt terrible that we hadn't been able to have as good of "control" as we did with multiple daily injections and started to question if we made the right choice having him go on an insulin pump. We have been blessed with an amazing Endo that is more than just a doctor treating his patients, he is someone who actually cares and understands how difficult it is to live and manage T1D. He quickly assured us that he was in no way concerned about the higher A1C and that we were still learning the pump and it was completely normal and that he knew by the next visit we would be back on track. We left feeling a little better but also determined to have a better A1C the next visit!

Since that visit in January we have been working really hard to learn how to make the adjustments to the pump. It is a lot more complex than being on shots. Shots it was black and white: 4 highs in a row in the same category you increased the fast acting insulin dosage, 1 low in a category and you lowered the fast acting insulin dosage, high across the board you increased long acting insulin dosage, low across the board you decreased the long acting insulin dosage. Now, we are dealing with basal rates, insulin/carb factors, correction factor, reverse correction, special bolus options and they can all be fine tuned to mimic (as close as humanly possible) the function of a pancreas.

Well yesterday all of our hard work paid off and we dropped 1.2 points in his A1C and we are safely back in range (insert Happy Dance) We still have a long way to go in learning the pump life but at least we know we are on track and getting the hang of it! J's Endo also went over some of his Dexcom G4 CGM data that I brought to the appointment and showed us how to analyze them and make changes based on the trends of his blood sugar. We left feeling a million times better as usual and are looking forward to our PENS team visit next week to pick their brains even more and continue our pump education.  

Take that Diabetes! 

How do you handle getting your A1C "report card"?

Negative

The results from E's Type 1 Diabetes TrialNet autoantibody screening came in......NEGATIVE! Woo Hoo!!

This result means that at this time his body is free of the autoantibodies that cause T1D. Although he won't be screened for another year, this doesn't ensure that between now and then he won't develop the autoantibodies and progress into being diabetic. It just simply means that at this time he is low risk, and we can sleep a little easier knowing that he is safe for now.

I have found that there isn't much knowledge about what this screening is and why you would choose to do it. Personally for us it is the prevention trials that go along with the screening. If E were to have a positive result and autoantibodies were present, there are prevention trials that we could put him in to potentially stop or prolong the progression of the autoantibodies that cause Type 1 Diabetes. For us as parents knowing that this screening was available and choosing not to participate, if god forbid the day came and E was diagnosed with T1D and I knew there was a way we could have maybe, possibly prevented it and we didn't explore that option....I would NEVER forgive myself! I of course don't like the idea that he has to have a blood draw (although he wasn't even phased by it this year) but what is one little poke, once a year?

This test is not just limited to siblings, both Anthony and myself have been screened as well! Here are the qualifications:
Anyone between the ages of 1 and 45 years with a sibling, child or parent with T1D
and/or
Anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent, or half-sibling with T1D.
Close blood relatives of people with T1D are at 10 to 15 times greater risk for developing the disease than people with no family history!!!

If you haven't heard of TrialNet and you want more information about getting a FREE screening for you or a loved one you can go to this link http://www.pathway2prevention.org/

Happy Thursday :)

Frenemy

Easter is only one week away and for a parent of a diabetic these are always stressful holidays as they are often geared around CANDY!

This week we have J's school party with an Easter egg hunt. The teacher has sent home plastic eggs with each student to be filled by the parent with something (food, candy, toys etc) and naturally most will be filled with candy. The difficult part of this is keeping track of how much has been eaten and or allowing it to be eaten in moderation when I am not present. I am hoping they will not allow the children to open the eggs until they get home but if they do then we will just have to wing the carb counting and hope for the best.

Then there's the party! Thankfully, J's school is very structured and they have a sign up sheet for each party only allowing one treat and the rest of the food is healthy. This saves us from crazy high blood sugars and being a preschool sugar is also their "frenemy" (I use the word frenemy because although sugar is our enemy, it is also something that saves J's life when he is low making it our friend, resulting in frenemy)

As I have mentioned in previous posts, I will never deprive J of the "normal" holiday experiences. They just take a little extra planning and creativity. Which brings me to Easter Basket planning.

Thankfully I was never the type of parent who allowed my children to have candy on a regular basis and to be honest my children will choose fruit over candy any day. This has made our transition into life managing diabetes easy, but makes holiday's a little tricky (Easter Baskets, Stockings, Valentines etc) I have to really think outside the box during these holiday's and use some creativity. I always include little candy treats but I have a lot of other space to fill up. This year the amazing D-Mom posted a blog about 50 Non-Candy alternatives for Easter Baskets. http://www.d-mom.com/50-non-candy-easter-ideas/
I love seeing posts like this because it allows me new and creative ideas that I may have never thought about before. I wanted to share this list with everyone because if you are looking for new cute and creative ways to fill Easter Baskets (even if your children don't have diabetes) then this is a great resource for you!

If you have other ideas outside of this list or traditions that you have created then I would love for you to share :)

A Day in the Life

If you read my post yesterday then you know that I was tracking my day of J's Type 1 Diabetes management. Well it was the perfect day to document because diabetes was rearing it's ugly head all day and keeping us on our toes!

We started out the day with a forgotten backpack. This normally wouldn't be a big deal and I would have just had to have his lunch to school in time for him to eat, but when you have a child with T1D that backpack is literally their lifeline! It contains his Insulin Pump PDM which is also his blood glucose meter, CGM monitor, Low Kit, Snack Kit, Ketone Meter and the almighty Glucagon Shot! Needless to say I had to rush the backpack to the school as soon as I saw it on the table! As I have mentioned in the past we live about 30 minutes from his school so I was very thankful no problems arose during that lapse in time.

The rest of the morning went normally. We got our daily text during snack time telling us his BG 186 and what they had for snack that day. We sent off the carbohydrate count to bolus for and that was all we heard until lunch.

Our lunch text was normal as well but the only problem that made me a little concerned was his blood sugar number before eating only being 88. That's a little on the low side and lately when we have these types of numbers he tends to drop low after getting his meal bolus. At school we have them wait until he is finished eating and then they give the entire bolus amount, when J is with us we split the dose into two (the carb amount we know he will eat up front and the remaining after he has finished his meal) this way he has insulin to start working while he is eating to prevent his BG from spiking so high because insulin takes 2 hours for it to reach it's peak. Since he was getting his bolus after his meal (around 12:30-12:45) I convinced myself that he should be ok because a majority of his carbs would be kicking in and prevent the low.

At 1:37pm I sent out a tweet saying "Wondering what's going on with JPs BG at school since bolus and wishing I could see the Dexcom right now!!"
1:47pm I get a text from the TA

I KNEW IT! Ugh, I need to start listening to my gut and text them to see what's going on so I could prevent things like this from happening!

Anthony picked him up from school early yesterday and took him to his dentist appointment with him. Of course one of the first questions we ask each other is..."what's his number doing" Dexcom CGM reading 102 angled arrow up. Whew, thank goodness for the quick reaction from J's teachers.

Anthony and J got home around 4:00pm and J was hungry for a snack. We checked his BG 231. Classic rebound high from treating a low. We gave him the bolus for the snack and the correction for the high BG

5:41pm J was wrestling around with Hope (his diabetic alert dog) and he started crying. Anthony went over to him and checked him to see what had happened and noticed that his pump site was bleeding (there is a little clear window so you can see where the cannula inserts into the skin)
Cue the pump change battle!

We got the new pump all set up and sat down to eat dinner. BG 159

After dinner we gave J his bolus and went about our normal routine. Cleaned up the kitchen and down stairs toys and made our way upstairs to give the boys a bath and get them ready for bed.

7:36pm J and Hope were playing upstairs in our game room and we noticed Hope alerting like crazy. I looked at the Dexcom 314 one arrow straight down. Good High Hope! We gave her treats and told J it was time to settle down and get ready for bed. He sat down on Anthony's lap.

7:42pm Anthony noticed that the adhesive was lifting on J's new pump site and turned on his flashlight to see what was going on with the cannula.......sure enough the cannula was pulling out from the skin!!!! UGH another pump change (this has NEVER happened to us before)
Cue the pump change battle!

We got J's new pump site all set up and put E to bed. J fell asleep on the couch and Anthony carried him off to bed. I decided around 8:50pm to go and check his Dexcom CGM to see what was going on (if the site was bad his blood sugar would be going up) 147 double arrows down! This means that he is dropping fast. I was a little concerned because that is a pretty low number to have double arrows down and he still had over a unit of active insulin on board. I went back every 5-10 minutes to check and see where his numbers were at and waiting to see the straight across arrow indicating he was steady at a safe level.

9:27pm on my last check up the Low alarm went off on the CGM. BG check 82! I knew it! Ugh, I ran downstairs and grabbed a juice box. By the time I got back upstairs Anthony was sitting on the bed with J and trying to wake him up. This is no easy feat, he often tries to physically fight you off and go back to sleep, so we have to pick him up and hold him in our arms to coach him through drinking a juice box while sleeping. It took until 10:00 for him to bump up barely above 100 but the arrow just remained straight across which wasn't comforting.

11:00pm another low alarm from the Dexcom. I ran downstairs and grabbed another juice box and started the fight to wake him up all over again.

Finally at 12:00am the arrows changed and his blood sugar check was 112! I looked at the CGM a few times over the next hour to make sure that he was continuing to rise, he did so I finally fell asleep.

3:30am ANOTHER low alarm!!! I checked his BG 116, I ran downstairs and grabbed another juice box and like Groundhogs Day I fought him again to drink it.

Around 4:15 he finally started to climb on the CGM and I did a BG check to confirm 156! Thank you Jesus and back to sleep I went :)

6:15am came quickly and it was time to get him up and ready for school. I came downstairs to check his school calendar (I thought it was free dress day but needed to confirm) when I walked back into the room Hope was alerting to J and waking him up. BG check 169! Good High Hope and a little shocking that he wasn't higher from the 3 juice boxes during the night!

I can say this is NOT a typical day. This was just one thing after another and while most of these things do happen on a regular basis, they almost never happen all together on the same day! However, T1D picked a perfect day to give you a unique glimpse into just how exhausting and ruthless this disease can be. You can never rest easy and you can never predict what is going to happen next!

Day of Diabetes

Today on Social Media you might notice a lot of people tracking their day of diabetes management with detailed #dayofdiabetes posts.

This is a great way for you to share your story and give people a unique look into what it is like to manage Type 1 Diabetes for an entire day! I encourage you to join in and follow the trends! If you want to see what my day is like, the links to my social media accounts are listed in the right column.

Happy #dayofdiabetes
Now go help spread some awareness :)

Make A Difference

Since J's diagnosis we have jumped head first into doing our part to help find a cure for Type 1 Diabetes but also advocating for our son. Here are a few ways outside of this blog and my social media accounts that I am helping to make a difference!

We have become heavily involved in JDRF (Juvenile Diabetes Research Foundation). We attend nearly every event, donate money, donate services, donate time, and I'm always trying to reach out and motivate more people to join in our fight for a cure and attend events. My husband also became a member of our local JDRF chapter Board of Director's a month after J was diagnosed.

The past year I have also been working on starting a Non-Profit Organization with my Mother In Law to provide nursing and volunteer support for schools that do not provide care to Type 1 Diabetic children. Our children deserve the best care even while they are attending school and those children, like J who don't have a nurse or trained volunteer available to them are put at risk! This is a HUGE problem and I am trying to do my part to provide a solution.

Just recently my husband and I have started another company. After J was diagnosed there is no doubt that I became an advocate by every means of the definition. My husband knows how much this cause means to me and had a custom diabetes awareness necklace made for me. I wear it every day and it is a reminder to never give up hope and to never stop bringing awareness to this disease. I have had such an amazing response to this necklace by people at diabetes events and also on my Instagram and Twitter accounts, that we decided to have it replicated and we now have them available for everyone! http://www.diabetesnecklace.com/ We decided this would be an amazing way for us to spread awareness and also an opportunity for us to donate even more to finding a cure for J and all of the other diabetics out there! We decided a portion of every sale would go to an organization fighting to find a cure!

I know that not every family has the means to donate money to help find a cure, but donating your time is just as valuable. Reaching out to your community and bringing awareness, holding a fundraiser, bake sale, organizing a school walk etc. Every dollar counts and just one dollar could be the dollar that pushes us from hope to a CURE.

I am always looking for new ideas and ways to raise awareness and I'd love to hear how you are advocating and making a difference :)

A Sticky Situation

Today, I thought I would share two of my favorite D-products that we just can't live without during site changes!

Uni-Solve Adhesive Remover
If you wear an Insulin Pump or CGM then you know all too well that those things will practically rip your skin off with them during removal. After our first OmniPod removal, I quickly realized that I needed to find something to dissolve the adhesive so removal would be pain free for J. After much research I found this miracle product, and we have never looked back! We purchase our supply on Amazon and we have found that the squeeze bottle is the best, since you can completely drench the adhesive tape. Then once the site or pod is removed, we use the Uni-Solve wipes for any excess adhesive that might be left behind. If you don't use an adhesive remover or are unhappy with your current brand, give this a try and I promise you won't regret it!
To use you just squirt or wipe the area with the solution and let sit for a minute (the longer you wait the easier it will be to remove.) Voila! Pain Free Removal!!!

Skin-Tac Liquid Adhesive
Recently I had to research extra adhesive for J's Dexcom G4 CGM. The adhesive on this site doesn't seem to hold up for the 7 days of wear. After Day 3 I was having to use medical tape to keep the sensor in place for the duration of the week. Until recently that was working fine, but J has started to have reactions to the tapes I use......not good! During my research I found Skin-Tac and after reading countless reviews, I decided that we would give it a try. So far it has been amazing and is helping make the adhesive stick for the entire 7 days. We also order this product off of Amazon.
To use you just apply to the area of the skin where you plan to put your site, let it "dry" for a minute and become sticky, then you apply your Pump or CGM Site as usual! Easy Peasy!! However, if you use this product you will definitely need an adhesive remover to aid in the removal!

What are some D-Products that you can't live without?