Friday, March 28, 2014

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?

Wednesday, March 26, 2014

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?

Monday, March 24, 2014

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!

Friday, March 21, 2014

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!!

Thursday, March 20, 2014

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 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

Tuesday, March 18, 2014


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!

Thursday, March 13, 2014

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 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!

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 :)

Wednesday, March 12, 2014

What the Pump?

This morning was a typical hectic morning trying to wake J up for school. He is by no means a morning person so this is always a battle. By the time we actually get downstairs, we are always in a rush to figure out breakfast, pack lunch, update BG logs, get dressed, pack up his backpack and diabetes supplies.....then throw a 2 year old in the mix and it seems more like a circus act than a family.We live about 30 minutes from the school J attends, so this morning he got out of the door just in time to make it to school by 8 o'clock.

I continued about my morning as usual cleaning up, doing laundry, vacuuming and getting prepared for the day. Around 10 o'clock my cell phone rings, I can see on the caller ID that it's J's school.....cue a lump in my throat and rapid heart rate. I know by now that it is never a good sign when they call me. Today it was J's teacher and not the TA that normally does all of J's diabetes care. She informed me that it was snack time and they couldn't find J's Pump PDM in his backpack. What do you mean?? I ran downstairs to find it sitting there on the counter top!! Mom and Dad FAIL!!!!

I told her that I was almost ready and that I would be there ASAP but to go ahead and let him eat snack with the class ( I never ever want him to be different or to miss out on what the other children are doing)
I threw myself together as quickly as possible, got E ready and all packed up and we headed out the door. I was sick to my stomach that we weren't closer to the school because I knew deep down that every minute that passed his blood sugar was going higher and higher with no insulin covering the food that he just ate. How did I miss it sitting right there on the counter top all morning?

When I finally made it to the school it was recess time and as soon as he saw me he came running over with one of his little friends. I apologized that we forgot to pack his PDM and started the process of fixing it. His little friend saw me getting out the PDM, lancet and test strips and told me that he wanted to help! Bless his little heart, I could have hugged him! I told him that was very kind and that I would let him help me. He told me that he wanted to press the buttons, so I let him press the "confirm" button on the PDM screen and as I held the lancet to J's finger. He asked if he could press the button on the lancet, so I let him. J just sat there with a huge smile on his face. I gave the correction needed and thanked his friend for helping me take care of J and off they ran to go finish playing. It melted my heart to see his friend be so interested and wanting to help take care of J, I pray that J always has friends so supportive and caring of his diabetes!

Today was a day of mistakes. A situation that never should have happened, but we are only human. In this disease every high or low blood sugar is our mistake. A mistake in carbohydrate calculations, exercise, correction factors, basal rates.....this all lies on our shoulders! We make these decisions, not a doctor, not a nurse, just two parents praying that the care we give and the decisions we make will be enough to keep him healthy and strong. Today was an easy fix, but the guilt that I feel for causing a blood sugar in the 300's from a careless mistake, is something that I will never get over!   

Tuesday, March 11, 2014

Binders Binders Everywhere

As I have mentioned in my About Me post I am an organizer by nature, and binders are one of my many obsessions!

I have a Home binder with lists of all of our contractor's information, appliance information, warranties etc.

I have a Family binder that has our Passports, SS cards, insurance documents, memory cards, etc.'s only natural for me to have Diabetes binders :)

I have a Day to Day diabetes binder that holds blood sugar logs, nutritional information for take out restaurants, a dry erase page to be able to log his food/carbs for meal calculations, a place for us to write questions and put our Pump and CGM data downloads to take along for Endocrinologist and PENS Clinic visits.

As if all of these binders aren't proof enough of my Type A Personality, I have again taken it to the next level and am in the process of compiling a set of binders for not only our home but also the homes of our immediate family that J visits. This is my attempt to get our family familiar and comfortable with J's care when we are not present.
These binders have the following sections:

Instructions- I have written step by step instructions for the use of J's OmniPod and Dexcom CGM
Warning Signs- I have printouts of the symptoms of Hyperglycemia (High Blood Sugar) and Hypoglycemia (Low Blood Sugar)
Exercise- I have printouts that describe blood sugar ranges for safe exercise, how exercise effects blood sugar, how often to check blood sugar during play and when it is necessary to give snacks to keep a stable blood sugar.
Ketones- In a rare case that we will be away from J for an extended period of time (highly unlikely to happen since it didn't even before diabetes) I have included information on Ketones and how to treat them.
Emergency Glucagon- This is that dreadful little red kit that will save J's life in the event of a severe Low Blood Sugar. Although, there is a phone app available and instructions in the kit, I have also printed out step by step instructions for easy reference, god forbid they are ever needed.

If you're not an organizer by nature, I urge you to give this a shot and see how easy and time saving it truly is and if you are a fellow organizer and you have some different methods that you love and live by, please share! :)

Monday, March 10, 2014

Waiting for Daylight

As a parent of a child with Type 1 Diabetes you spend countless nights up battling diabetes and waiting for daylight to come. During the day blood sugars are just as unstable as during the night however, you have one can see the symptoms!

During the night this is a much more difficult thing to detect as a parent. The symptoms are often the same things a non diabetic does in their sleep: Restlessness, Sweating etc. Since J's diagnosis my husband and I have been alternating nights sleeping with him. Before life with a CGM and a Diabetic Alert Dog we just had to go off of intuition and his sleep behaviors to tell us when we should check his BG. However, since getting a CGM and Hope we have a new layer of protection for J and a more solid ground for us to monitor him and keep him safe. While, we still alternate nights "on duty" watching the CGM and training Hope to come to our room and alert us when J's numbers are out of range, I am still scared that those two tools just won't be enough and the "what if's" start to creep in. What if we didn't hear the CGM alarm from our room? What if Hope doesn't come to alert us? What if he isn't alive the next morning? You might be thinking to yourself, "What do you mean, alive the next morning?" Well unfortunately for a person living with T1D nighttime is the most dangerous, and there's a little thing called Dead In Bed Syndrome lurking in the dark. Here is a brief description of DIB Syndrome

While we know as parents we are doing everything in our power to prevent DIB and major complications, there is always the "What If". So until Hope is fully trained in night alerting and until I can get past this fear which I know will never go away....One of us will always be right next to him staring at the CGM screen, fighting diabetes, training Hope and WAITING FOR DAYLIGHT!!!

Wednesday, March 5, 2014


In the world of Type 1 Diabetes we refer to the day of diagnosis as D-Day. Once you have earned your membership into this club people's first question is always......How was he diagnosed? Unfortunately, this disease is very difficult to diagnose because it often disguises itself as the flu and in some cases the diagnosis comes too late and an innocent life is lost.

January 11, 2013

This is a day that will forever be etched into my memory, but to be able to give you the entire picture I have to rewind to a few weeks before this dreadful day.
A few days after Christmas 2012 we had to take a trip to Texas for our nieces first birthday. We have travelled countless times with our children and never had any problems, as a matter of fact we had just gotten back from a trip to Hawaii a week prior and had no issues at all. On our flight to Texas J wasn't acting normal and actually got sick on the plane, something that he had never done in his 30 some odd flight career. Like I said, we travel A LOT!!! We didn't think too much of it and just thought maybe he was coming down with something. When we got to Texas, J was very lethargic and had little to no appetite the entire trip. Since we travel a lot we have learned to pack the medicine cabinet to be prepared when and if any illness arrives. We just happened to have an antibiotic for J because he was scheduled to have his tonsils removed the third week in January. When he woke up in the middle of the night in pain and acting like his throat was hurting we decided to start the medication.
December 29, 2012
We attended the birthday party but spent the next day in the hotel room resting as we all were feeling a little under the weather. That evening J started to perk up and while playing with his Grandma spinning in the chair, he fell out of the chair and hit his head on the coffee table. He had a small bump but it didn't seem to bother him and his behavior was normal.
December 31, 2012
On our flight back home Joseph got sick again on the plane and was right back to his lethargic state that he had been at the beginning of our trip.
It was New Years Eve and we decided to cancel our plans and stay in because J was not feeling well at all and started vomiting during the night, but only at night.
January 2, 2013
Once the holiday was over we decided to take him into the pediatrician. We didn't know if he had a mild concussion from the fall, if he was having a reaction to the medication or if he was suffering from the flu. J's pediatrician examined him and ruled out a concussion, said he was fairly certain it wasn't a medication reaction and that it seemed more in line with the flu but decided to send us home with a lab slip and if he wasn't improving in a few days to take him in for some blood work. So we waited........
January 6, 2013
No improvement, and the night time vomiting seemed to be getting worse and we started to worry of dehydration, so we loaded him up and took him to the ER. J was examined by a physician that seemed a little puzzled by the symptoms that he was having so he ordered a panel of tests to be done to rule out a multitude of things. We were on our way to the first of these tests which happened to be an ultrasound to look for appendicitis when the technician got a call that the test was cancelled. We got sent back to the ER room where another physician examined J. He told us it was the flu, he wasn't dehydrated and he gave him a Popsicle and said that if he ate some of it we could go home.......(great thing for a diabetic and often the reason they go into a coma before diagnosis is caught!) So we made him eat the Popsicle and we got sent home with some anti nausea pills and our minds were put at ease that this wasn't a more serious problem, I mean, it was just the flu!
January 7, 2013
The next morning the anti nausea pills seemed to do the trick. J perked back up to his normal self and the night time vomiting had stopped and he was back to eating and drinking, Hallelujah!
January 8, 2013
I noticed that J seemed to be having a lot of accidents. He would be watching television and just urinate in his underwear without even trying to make it to the bathroom. We had been struggling with potty training for some time, so I thought to myself that this was just another one of his backslides.
January 9, 2013
J began to guzzle, and I mean guzzle the liquids. Looking back now, I am so thankful that I don't give my children juice or sugary drinks because this could have turned into a much different story.
January 10, 2013
The drinking and urinating seemed to be getting worse and the accidents more frequent and I started to cut back his liquid intake to help prevent the accidents and I had convinced myself that he was just trying to rehydrate from having the flu. When he would ask for something to drink and I would only give him a half of a cup and when I'd tell him "No" to more he would be in tears, so I would give in and give him more.
D-Day Friday January 11, 2013
This morning I decided that something might be wrong, J's drinking wasn't slowing down and his accidents seemed to be getting worse and more frequent. I put a call in to our pedictrian to go over the symptoms, but he was on vacation. His call service gave me the number of a physician that was on call for our pediatrician's patients. I called their office and spoke with a nurse. I explained to her the whole story. She agreed that he was probably just re hydrating from having the flu but if it didn't improve by Monday then I could always bring him into the office. Whew, again my feelings were validated. We went about our day and when Anthony got off of work he met me at the Hair Salon, I had a scheduled appointment so we exchanged cars and they went on their way back home. During my appointment I got a text from Anthony saying that the on-call Physician from the doctors office that I called had been reviewing the notes from the day and was concerned about J's symptoms and wanted us to bring him into the office that night! He told Anthony that there was a small chance it could be DIABETES and he wanted to rule it out. DIABETES??? What do you mean DIABETES? This was the first time we had ever heard that word and had no idea how our child who was completely healthy could get diabetes. So, I finished my hair appointment came home to load up and meet the physician at his office. By this time it was around 8 o'clock at night and this amazing doctor went out of his way to meet us at his office. He had worked all day and then also worked a shift at the hospital. He told Anthony on the phone that he needed a urine sample, so before we left the house Anthony was able to get one with the cup that they had given us at the ER that was never filled or tested. We sat in this little room while the physician tested his urine for what felt like an eternity. What would be our fate? What does having diabetes mean to a child? In those moments I said more silent prayers than I ever had in my entire life. The doctor walked back into the room and it was written all over his face and then, he said those earth shattering words "the test was very POSITIVE." We sat there in shock as he explained this wasn't a death sentence and that we would have to go to the hospital for treatment and we would to learn how to care for him. He called ahead to the hospital to make arrangements so we wouldn't have to wait once arriving. He told us to make arrangements for E because we might be in the hospital for a few days. We thanked him for opening his office and we left to go home and gather our things and head to the hospital. We had no idea what this diagnosis meant for J's future, or for us as his parents. We notified our immediate family, made arrangements for E, packed a bag and headed to the hospital. Once we arrived we went to admissions and they assigned us to a room. At this point I still had no idea which type of diabetes he had, I just knew that there were two type's. Once they took his blood to find out where his blood sugar was we found out that he was only in the 400s and that he was not in DKA, didn't need to go into the ICU and he wouldn't need any IV treatments. They were all shocked at how early we had caught this. That doctor reviewing those notes and opening his office to test J could have saved his life! We will be forever grateful for him and his deligence as a physician. The nurses gave J his first shot of insulin and he finally got some good sleep. We however, didn't get any sleep that night. I sat up all night Googling what Type 1 Diabetes meant for our son and his future. I sobbed the entire time out of heartbreak, fear and gratefulness that he was still alive. Over the next two days we were taught how to count carbohydrates, give injections and all about Type 1 Diabetes. Then we were sent home with a bag full of supplies and no idea what our futures would hold.

Looking back now a little over a year since D-Day, I have no idea how we got through it. They were the most trying times for us as family, and even more so, for us as parents. At that time I couldn't see past the next blood sugar check and injection but now, we have our life back and Type 1 Diabetes is just a background noise to our daily routines. Our days are never without worry or struggle, but we know that we will get through it together. We will do everything in our power as parents to keep our son Healthy, Strong and most of all still allowing him to be a Normal Kid. We teach him to share his story and be proud of who his is, he never has to be ashamed or hide his diabetes.
Joseph is not diabetes, Joseph is just a kid, who also just happens to have diabetes!

Tuesday, March 4, 2014

Where to start...

I have finally, officially started my blog. This is something that I have sat down and started and re-started, only to eventually shelve the whole idea. I didn't know where to start, what to say or if anyone would actually be interested in hearing my story at all. So, once I gathered up the nerve to actually begin this blog, I decided that my first post should be about me.

I am a Wife. My husband and I have been married 10 years this coming August.

I am a Mother. Our first son Joseph was born in 2009 and on January 11, 2013 at the age of 3 1/2 he was diagnosed with the autoimmune disease Type 1 Diabetes. This diagnosis forever changed our family and has led me into the life of advocacy and awareness, but I will save that story for another post. Joseph is your typical (almost) 5 year old, despite living with T1D and he is truly the most amazing and inspiring kid I know. Our second son Ethan was born in 2012 and is currently living "D" free and is your normal 2 year old, keeping us busy and on our toes. He is an amazing little brother and completely full of life, curiosity and determination.

I am a Stay at Home Mom. Since having Joseph, I have been a stay at home mother to our sons. If you are not a stay at home Mom and or don't know of the work that this requires then I assure you, you're in for a big surprise. It is the most rewarding "job" there is but it is also the most demanding of your time and patience. I wouldn't trade this time with my children for anything, no matter how much sanity I lose or social interaction that I lack. These are the most precious, impressionable years that I will one day look at and long to do over, and over again (or so I'm told).

I am a Service Dog "Trainer". Shortly after J's Diagnosis, we decided to get him a Diabetic Alert Dog. Again, I will go more into detail on this aspect of our life in a later post but just know that the route we went in getting a Service Dog requires us to do all of the training that is required for the 2 year program.

I am a Lover of my Family. My immediate and extended family are my everything. They are the people who are there to pick me up when I am down, and the ones to put me in my place when I am wrong. I am very protective of my family as they are of me and I would do anything for them.

I am a Creative Junky. I am always trying to come up with new fun ways of doing Holiday's, Birthday's and Family Tradition's. This also carries over into my Decorating addiction. I am always decorating and re-decorating our house and finding new projects to be done.

I am 100% a Type A Personality. I am an organizational freak, I need things to be done in the most efficient and timely manner possible, compulsive checklist writer, calendar planner, binder making fool. All of these things and the ones that I am forgetting, I am sure will come shining through my future posts and speak for themselves.

I love to Travel. We are always taking trips and creating new experiences for our family and children. They say "Traveling is the only thing you buy that makes you richer" We want our kids to grow up well rounded and experiencing everything this world has to offer. We thought that once J was diagnosed that our travelling would be dampened, but we have just learned the extra steps and precautions that are needed to travel safely. It is important for us to teach him that with a few extra steps, diabetes will never hold him back from anything he wants to do or see in life.

Lastly, I am a die hard Type 1 Diabetes Advocate which is why I am here. This disease is so complex and steals away so many aspects of life that you and I take for granted. It is so rarely brought to the attention of people and I am doing my part to change that. Before T1D entering our world we had no idea what those three little words meant and now, we wished that we never did. If you are a family impacted by T1D then I hope that me sharing our story will help you know that you're never alone and that the struggles that we face are normal and OK to share with the world. I never want my son to hide his diabetes or be ashamed to be a diabetic. He is just a normal kid, who also happens to have Type 1 Diabetes.

Through my blog you will learn what it is like to raise a child living with and battling Type 1 Diabetes. You will see that despite T1D we are still a normal family with normal issues and dilemmas. You will also see how hilariously funny and crazy our life really is, and how together as a family we can face anything life throws at us and get through it together with our undying love and support for each other. I hope you enjoy my story and I am always open to comments and feedback, so please feel free to ask away, I will do my best to respond to you in a timely manner.