Rockstar Power

There is no denying that I am sleep deprived. Once you have a child diagnosed with Type 1 Diabetes, sleep becomes a thing you only remember getting. To be honest I can't even remember what real sleep is, the past 5 years I have either been pregnant or had a newborn/toddler that was anti-sleep! However, I got more sleep in those previous 4 years than I have this year, hands down!

I am one of the few people who HATE coffee! Hate the smell, hate any form of the taste. Coffee flavored ice cream....hate it. Bailey's and cream....hate it. Tiramisu....hate it. I think you get the point!

The past year I have been on a mission to find a coffee that I can tolerate, you name it I have tried it. I have found one drink at Starbucks that I like and it is of course crammed full of calories and fat, which is not shocking since something has to masque the awful coffee taste. I have even tried making flavored coffee at home and adding creamers, but the problem with this is I am home with young children and that means that I don't even have the opportunity to drink a full cup before it gets cold and life gets too busy.

Alas, I have found my sidekick.....the Rockstar! Terrible option I know, but honestly I don't really have a choice. There is no way to properly function on the little sleep that my body gets. Even on the nights that Anthony is "on duty" with J, I still don't sleep because I am worried about what is going on with him and or tending to E when he wakes (he is currently cutting his 2 year molars). So for now it is my life line, and what gives me the energy to make it through another day and sleepless night.

I often ask myself what's more unhealthy....a energy drink or no sleep? Either way I figure it is not good, but I know there is a whole crowd of D-Parents right behind me powered by an unimaginable amount of caffeine!

D-Parents: What are you powered by?

How LOW can you go?

Yesterday was a terrible day of Low Blood Sugars both at school and at home.

The first text message came in around 11 o'clock but this low came with a special circumstance attached to it. We live about 20 miles from J's school and I was on the floor playing with E when Hope started alerting to a low blood sugar. I thought to myself I wonder if J is dropping low but quickly pushed it out of my head thinking that was impossible for her to detect, until Hope came over and practically sat on me to alert yet again. Miraculously not even 1 minute later a text from the school!!!! Call it intuition or coincidence she clearly knew something wasn't right. This low wasn't a severe low, 89 with a falling alert on the CGM, I told her to give him a 1/2 of a juice box and wait to see what would happen. It seemed to do the trick and all was fine.

Second text message came in around 1:50pm an hour after getting insulin for his lunch (Hope wasn't with me this time). J was 54 with double arrows down on his CGM (that means he is dropping 3+ points per minute) Thankfully the TA is amazing and had already given him the other 1/2 of the juice box before texting, so I told her to go ahead and also give him a package of fruit snacks just to be safe because I wasn't confident that the 7g of carbs for the juice would be enough. She did and that seemed to be the perfect amount of carbs to bring him safely back up into range.

Around 7:30 pm last night we had another scary low. It started out with the CGM where I noticed that he was starting to drop near the low 100's so I decided to go ahead and give him 12g of carbs to be on the safe side and prevent a low.....well 10 minutes later the CGM goes off again 46!!! I panicked and grabbed his meter to check his BG praying the whole time that the CGM was just off and he wasn't that low. Nope 45! Cue the panic attack. I ran down stairs and grabbed a juice box and ran it back up to him, I told him to drink it all as fast as he could (His juice is 15g of carbs per box)! You are supposed to wait 10-15 before you re-check a BG to give the sugar time to kick in, so during that excruciating wait the CGM goes off again! This time there is no number it just says LOW......NOT GOOD, that means his BG is below 40. We started to see him fading, glazed eyes, saying he was hungry, weak, pale. I ran down stairs again to grab a tube of glucose gel just in case we had to treat again. It had only been 5 minutes since his last check but we decided to go ahead and check to see what was happening. 65! Whew, the sugar was working.....waited another 5 minutes......95! Thank God!
Of course later last night we had the classic rebound high from over treating the low. I had to fight that stubborn high until 2am :(

I am so thankful that we have the CGM and Hope to keep a close eye on our boy and be two extra layers of protection. If we didn't have those safety nets yesterday who knows what would have happened at school or home and I honestly can't even go to that place. This is the part of Type 1 Diabetes that never gets easier or better. These are situations that we find ourselves in on a regular basis! However in those moments of panic I always wonder.......

Am I the only one who over treats in a panic and shovels sugar down my child's throat?
How low do you let yourself or child go before you hit that panic?
Do you wait the 10-15 minutes before re-checking?
What are the best or your favorite low treatments?

Type None

This weekend we attended the JDRF Annual Gala. This is our second year attending this event and it is truly one of my favorites. You get all dressed up and witness remarkable acts of generosity and everyone in that room is there for one reason.......curing Type 1 Diabetes!

The evening starts out with a silent auction. You get to walk around a room and bid on various types of items while being served appetizers, drinks and getting to mingle with the people attending the Gala. Some are familiar faces and some are new families to T1D or people that have no ties at all and were invited by their company, family or friend.

Once the silent auction has ended you are taken to the ball room. This is where you are served dinner, listen to guest speakers and get to participate in the live auction and fund-a-cure portions of the evening. The guest speakers are always a difficult one for me. Hearing people's stories of their tie with T1D, or seeing videos of children and adults living with T1D breaks my heart. This year they had a guest speaker by the name of Bobby McMullen. This man's story is beyond REMARKABLE!

Here's the short version.....Bobby was diagnosed with T1D at the age of 12, lost his vision in college due to diabetes complications, has undergone kidney failure, dialysis, two kidney/pancreas transplants, open-heart surgery, has a pace maker, and survived aggressive cancer just to name a few! Despite that laundry list of medical complications this is not the end of his story! Shortly after losing his vision Bobby learned to ski with a guide. Within a year he qualified for the U.S. Disabled Ski Team. He spent seven years as a member of the U.S. Team, was a two-time U.S. Disabled Overall Downhill champion, and earned his spot on the Nagano Paralympic ski team. During his skiing career he also took up bike riding. He works with a “ride guide” who rides ahead of him and calls out obstacles. Since 2004, Bobby has raced in at least 25 downhill, cross-country, and 8- and 12-hour mountain bike events each year. Mountain bike riding demands extraordinary athleticism, coordination, focus and courage. Riding blind with a guide requires extraordinary faith and trust. Bobby exhibits all of these traits as he faces adversity on and off the bike. (here is a link to read more about his amazing story Bobby McMullen)

Bobby is hands down the most inspirational person I have ever met in my entire life! Everything that he has endured in his life would stop most people in their tracks and make them wave the white flag. However, he just keeps going and pushing through the barriers of the impossible, proving that NOTHING can stop you from achieving your dreams and passions.

He was the perfect way for the people in the room who's lives aren't impacted by T1D, to gain a unique insight into everything that diabetes can steal from you, how difficult it is to live with but at the same time proving that it will never define a person or stop them.

We were able to raise a lot of money at the Gala this weekend and I am forever grateful for every dollar donated. Every day we are getting closer to finding a cure but we still have so far to go! I will always do everything in my power to bring awareness and more funding to find a cure, not only for J but for all of the people just like Bobby McMullen who have fought through the worst and deserve to one day live life free of T1D. So if you have the opportunity to participate in a JDRF event or another organization striving to cure Type 1 Diabetes, please do so and help us in our mission to turn Type One into Type NONE! Please remember that every dollar counts and every dollar given brings us one step closer to a CURE!

Rear View Mirror

Today while driving in the car I heard one of the most dreadful sounds you can hear.....the sound of the LOW alarm on the CGM (Continuous Glucose Monitor) I grabbed the CGM out of J's backpack and turned on the screen.......89 slanted arrow down, which means he is dropping 1-2 points a minute! I would normally check his blood glucose but I obviously can't do that while driving! I'm good but not that good ;) So, I just had to treat the low based on that number and trend information because I am just not willing to take the chance and wait.

I can't even put into words the feeling that rushes over you when you notice that your T1D child has fallen asleep in the car or you hear that dreadful alarm. Life before the CGM alarms I would stare as hard as I could (while staying safe) into my rear view mirror looking for him to take breaths and watching for signs of worsening conditions all the while rushing as quickly and safely as possible to the nearest spot to pull over and check his finger. There is always the chance that he is not just asleep, that he has passed out from a low blood sugar! We have had to wake him on numerous occasions to treat lows and we have also had to wake him up when it was just simply an innocent nap and his blood sugar was fine. There is just no way to distinguish between the two!

I remember the days before T1D came crashing into our world and I would feel relief when the kids fell asleep in the car. I would just sit there enjoying the peace and quiet. These are the kind of days I took for granted, the carefree "easy" days. Now, that peace and quiet I once enjoyed is filled with panic, fear and awful thoughts.

Now, that we have the CGM it is not quiet as scary as before. However, we have seen the calibration be 100 points off, so there is always that chance that it could be wrong and the number could be substantially higher or lower than the reading on the screen.

Today, I believe that it was right on target and I was able to avoid a low blood sugar. Once we arrived to our destination I checked his BG and it was 110 with the 8g of carbs that I had given him in the car.....perfect! Whew! However, there are times that I am not that lucky and I cause a high blood sugar. I will always treat on the safe side because I would rather correct the rebound high later then have J pass out or have a seizure because I decided to wait until I could check his BG.

So, if you ever see a parent driving down the road staring in their rear view mirror, just remember they could be a D-Parent and they are just watching making sure their child is still breathing until they find a safe place to pull over and check their child's BG!!!

If you are not a D-Parent and you are reading this, then please don't take those days for granted. Soak in those moments of peace and quiet while you watch your child safely napping in their car seat because those are the little moments that I would give anything and everything to have back!!

It's Time!

Last year after J's diagnosis we found out about the TrialNet Study. This is a study where they take a blood sample and are able to see if you have the autoantibodies present that cause Type 1 Diabetes. They recommend that any person with direct relation to a T1D get tested. If you are an adult it is a one time test, but if you are a child then you are screened annually to see if or when your body begins the process and then how long it takes for that to develop into T1D. TrialNet also offers prevention trials for those who screen positive and are at a higher risk for the development of T1D, and for this reason we decided to have E and ourselves tested.

We decided that if E were to ever develop T1D and we knew about the prevention trials but never screened for it, we would never forgive ourselves that we could have potentially prevented it from happening. So we scheduled our appointments with the lab and gave a sample of blood to be analyzed. After we submitted our samples we of course had to wait until the lab notified us of the results......pure torture! Not so much for myself, but to learn of E's fate. My worst fear is for him to also develop this disease. I see so many T1D families with multiple children affected by this disease and I am not quite sure that I could handle it! While certain aspects of another diagnosis would be easier a second time around, (we know how to manage the disease) I just can't wrap my brain around actually managing and worrying for two Type 1 Diabetic children.

Last year thankfully all of our tests came back negative and we could breathe a sigh of relief for the moment. They say that even with a negative result E could still develop T1D between screenings because the process happens so quickly in small children. We were told at J's diagnosis that it probably took a short 3 months from the start to when his body had killed off enough islet cells in his pancreas and his body finally couldn't keep up with the insulin demand needed! 3 months! Naturally, now any time E shows even the slightest symptom, the first thing that pops up in the back of our head "is it T1D?" While it is completely out of our control whether or not he develops the disease, the only thing we can do is get him screened and if GOD FORBID his body is in the process then we can attempt prevention trials to prolong and even maybe, just maybe, prevent it from happening at all!

This week we got the notification.....it is time for E's annual screening! While I know deep down that we have to do the screening, the anticipation of the results is just almost too much to bear. We pray for the test to be negative but like everything else in this unpredictable life, we will take the results as they come and deal with it the best that we can.

If you have a family member with T1D and you haven't been screened, you can use the link below to set up a screening in your area and it's FREE, so there is no excuse :)
Type 1 Diabetes TrialNet

Inspire

Bloglovin

This weekend we got an amazing opportunity to meet professional IndyCar driver #83 Charlie Kimball. Charlie is sponsored by Novo Nordisk, one of the major insulin brands.......yup you guessed it he has Type 1 Diabetes! He is the first driver in the history of the sport to have T1D.

J LOVES cars so I thought this would be so exciting for him to meet a professional race car driver and also see that he has T1D just like him. I am always striving for J to meet other diabetics so he never feels alone, especially since he has no family members who can relate to what he feels/goes through. As a mother I always come up with these ideas and have a picture in my mind of how it is going to go.........and it NEVER turns out the way I envision. On the way to the event both children had fallen asleep in the car, normally a good thing so they are rested and energized, well what I failed to know about this particular event was that it was a small meet and greet and then, a sit at a table and listen to Charlie's story and ask questions. Not an easy feat with 2 and 4 year old boys!

When we arrived we had to wake the kids up and that seemed to go well....yay! We walked into the room where the event was being held and we were the first to arrive.....yay! We met Charlie and when it came time for J to meet him, J decided that he was going to be shy (he is the most talkative outgoing kid ever) he immediately hid his face in my leg and then proceeded to try and crawl away. I nervously laughed and shrugged at the behavior and tried to explain that he had just woken up from a nap. We were still standing there speaking with Charlie and he was asking questions about Hope and the T1 management methods that we use for J. He was such a nice personable guy with such an amazing story! More people began to show up, so I told Anthony we should probably have him sign the car that we bought as a keepsake for J and I wanted to get a few pictures. J gave the car to Charlie and had him autograph it, but as soon as it came time for a picture with Charlie he again, shut down and became shy and refused a picture.

I decided that we should just pick a table and sit down as the room was filling up. I thought that maybe J would warm up and take a picture at the end of the event. Mistake #1, I picked a table near the front of the room, Mistake #2 I picked the table closest to the snack table, Mistake #3 I picked a table furthest from the bathroom!   

We sat down and as the event was beginning to start our children saw people grabbing water, cookies and fruit snacks from the snack table. They of course wanted a cookie, so Anthony went and grabbed cookies and water for them. Charlie began to talk and share his story of how he became a IndyCar driver so the room was nice and quiet. J decided that he didn't like his cookie that he wanted fruit snacks, then E decided that he wanted the same thing as his brother. So, I got up and I grabbed fruit snacks and sat back down. Then J accidentally spilled his water all over the table, so I had to get up and get napkins to clean that up. We sat there listening to Charlie and trying to wrangle the kids into behaving and sitting quietly but unfortunately the topic wasn't as interesting to them as it was for us. J got restless, so I convinced him to sit on my lap and he wanted me to rub his back. He was sitting quietly so I didn't care. E got so restless that Anthony had to take him out of the room, but managed to do so without J seeing. A few minutes went by and J decided that he needed to go to the bathroom. Well this posed a dilemma because Anthony was out in the lobby with E and I had Hope, the backpack, my purse and J. I decided that Hope was sleeping and tied up so she would "fingers crossed" stay there, and the backpack would be fine so I grabbed my purse and off to the rest room we went. As we sat back down in our chairs J noticed that Anthony and E were gone and he wanted to know where they were, at that exact moment E ran up to the glass doors and J immediately wanted to go out there with him to run around and play. I whispered for him to QUIETLY leave the room. I was hoping that Charlie would be wrapping up soon, so we could get a picture and leave. He seemed to be heading that direction but then started the Q and A portion. He got a few questions in, and Hope started alerting and staring at the door looking for J, she was very uneasy and not letting it go. J had been running high the whole time that we were there, but we had given a correction when he ate the cookie so he was starting to come back down. She just wasn't having the "we are fixing it", so I got up threw away all of our mess, gathered our things and left the room. *Sigh*

I was happy that I got to hear Charlie's story and be so inspired by his determination not to let T1D stop him. As a parent that is my worst fear for J and people like Charlie Kimball are proving to our children that nothing can hold them back from their dreams. Although, they might have to take a few extra steps and do things a little differently, it will NEVER stop them. I will forever be a fan of Charlie's and grateful for the hope that he has given me as a mother. Although, J didn't grasp the story that he was hearing and how impactful it is for his life, I was glad that we went and TRIED to make it a special thing for him. Hopefully when J is a little older he will be given more opportunities like this and be able to appreciate them and as a parent I even learned a few new valuable lessons! ;)

The only picture I was able to get of J and Charlie Kimball!



Hope the Wonder Dog

Shortly after J was diagnosed with Type 1 Diabetes, I began to research everything about this disease and the treatments available, and by shortly I mean.....at the hospital! During my obsessive searching I ran across information about Diabetic Alert Dogs (aka D.A.D's). One of the many disadvantages of having your 3 1/2 year old diagnosed with T1D is that they are unable to tell you when their blood sugar is going high or low. Then add in the fear of Dead in Bed Syndrome (if you're not familiar with what that is see my previous post "Waiting for Daylight") and the result that you get is a frantic mother determined to get a D.A.D. to help us protect our son. I have this unbearable urge to have every tool available, so we have the best chance at successfully managing this awful disease and it's unspeakable complications.

We began our vast research of the organizations that train D.A.D's and their cost/requirements. We quickly found that there were very few places that would place a dog with us because J was not of an age to be the handler of the dog. Then we came across Warren Retrievers! http://www.sdwr.org./

Let me just preface with this.....if you've heard about this organization from hear say or if you have read the articles online, all I have to say is.... "Don't believe everything that you hear and read." My husband comes from a Law Enforcement background and knows how to investigate people and organizations and we took full advantage of those skills during this process. We've seen the articles and were contacted on numerous occasions by the group of individuals trying to taint the image of SDWR because of their "bad experiences". After many discussions with SDWR and also speaking with multiple families who have SDWR Diabetic Alert Dog's both across the country and locally, we came to the conclusion that this was an AMAZING organization!

Needless to say we were officially put on the wait list....yes, a wait list for our Diabetic Alert Dog in February 2013. Just one month after J's diagnosis and 8 short months later we got Hope the Wonder Dog!!!

Hope came to us at the age of 4 months. We chose to go with a puppy because of the age of our children and we also have another dog. We figured that bonding with the family would be better at an early age and since you have to learn the training whether you get a dog that is 2 years old or 2 months old, this was just the best choice for our family.

At just 4 months old, Hope was already scent trained, potty trained and knew basic obedience(Sit, Stay, Down, etc). At Hope's delivery we spent 4 days with a trainer. We learned Hope's natural and trained alerts to High and Low blood sugars, how to continue to advance her training for both diabetic alerting and public access. Right from the start we were completely amazed at her alerting and what an amazing dog she is with the children and in public. Now, of course this is a puppy that we are talking about. She had accidents in the house, chewed up things that weren't her toys and is still learning and growing every day just like a normal puppy. Diabetic Alert Dog's are not a full proof method of managing your diabetes, but nothing in this little world is, she is simply another tool to help save our son's life.

Yes, Diabetic Alert Dog's work! Yes, she can smell his High and Low blood sugar changes! Yes, she can be 20-30 minutes AHEAD of a blood glucose meter and continuous glucose monitor! Yes, she goes out in public and alerts to other diabetics! Yes, she really is that amazing and YES, she is totally worth the work and money!

Having a Diabetic Alert Dog is not easy, it takes a lot of time and effort and it is not for every family. However, if you've never seen a D.A.D in action then I urge you to reach out and find one in your area. I promise, you will be amazed and you will quickly find yourself waiting for your D.A.D to arrive to start saving your T1D's life one "paw" at a time!

-Until there's a cure, there's a dog!

Our local SDWR Diabetic Alert Dog families and Trainer

Joseph and Hope are on the left :)