Six Years Later

License 2007I have to renew my driver’s license. The last time I renewed it was six years ago yesterday.

Caleb’s medical diagnosis date is January 3rd, 2007, but I often say it was his preschool teacher who diagnosed him on January 2nd.

It was much like yesterday – the first day back to school from the holidays. We suspected diabetes, but it seemed improbable. Impossible. I dropped Caleb off at school and casually asked his teacher to keep an eye on him to see if he was going to the bathroom more than usual. I barely finished that statement when she let out a little gasp and put a hand to her mouth. It gave me a split second of hope because I just knew she was going to tell me about some virus going around. That hope was dashed when the word “diabetes” passed her lips in a whisper.

Just like that, hope turned to dread. At that moment, I knew in my heart it could be nothing else.

Because I didn’t understand the risks, I left Caleb at school planning to call the doctor later that day. I went directly to have my license renewed. I remember it clearly. I cried all the way from the school to the AAA office.

I haven’t been able to look at the picture on my license without remembering that day. I see the puffiness in my eyes and the forced smile. I remember standing on the mark to get my picture taken – I was numb.

I had planned to go back to that AAA office today, but Caleb woke up unwell. He takes great pride in his perfect attendance, so I knew when he said he wasn’t up to going to school, he wasn’t. Thankfully, he’s more himself tonight, so I’ll go for the renewal tomorrow. Six years and one day after.

I’ll have a new picture, and in a very peculiar way, it will be a new beginning.

The whole story of When It All Changed,

When I Knew,

and how We Were Lucky even though we waited. 

 

Update January 4, 2013, New beginning begun:License 2013

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Lilly Diabetes and Disney | Tween Book Series and More

Do you remember Coco? She and her book series were introduced by Lilly Diabetes and Disney at Friends for Life in Orlando last year. Coco has since been received warmly by many and received wonderful reviews.

Yesterday, at the Lilly Diabetes Summit held at their corporate center in Indianapolis, stories about the impact that Coco has had were shared. A young, newly diagnosed girl was able to comfort her worried parents after reading the book and tell them she was going to be okay. Grandparents living with diabetes have used the book to explain what diabetes is to their grandkids. The overwhelming opinion of those at the meeting was that Coco’s story is a wonderful way for kids to feel better about living with diabetes and to help others understand what it means. This picture book really stands out as THE book to get the message across to kids. Not just newly diagnosed kids, but all kids.

In addition to the Coco book, the Lilly Diabetes/Disney collaboration produced the first two books of their tween series. One is titled Power Forward, featuring newly diagnosed Justin, and the other is Up for the Challenge, featuring newly diagnosed Allie. Both have a sports focus which is clear from the picture and the inclusion of “ESPN” on the cover.

Both books are about middle schoolers who are very skilled athletically and play key roles on their sports teams. The main characters are new to diabetes and their biggest difficulty seems to be telling their friends about it. Other issues come up, but the central theme is whether and when they will share the news of their diagnoses.

These books are great for newly diagnosed kids. I don’t know of anything else out there like this available for kids of this age. I think the characters are relatable, the issues are authentic and the message of what it means to be living with diabetes are, for the most part, properly portrayed.

The struggles featured for these characters were more emotional as opposed to physical. For tweens that may indeed be the priority at first. The books are not intended to be a fully inclusive depiction of every issue a newly diagnosed person is presented, nor are they meant to be medical advice. There were times that both characters’ blood sugars went low due to activity – managing sports with diabetes is a focus for both books and hypoglycemia is a real issue we see often when Caleb is active. I found myself anticipating an out-of-range blood sugar at one of the many times the characters responsibly checked their bg. It might be better to say I was actually rooting for an out-of-range blood sugar to see how the story would address it because so many other things were being portrayed well. Those opportunities were few. I worry that a newly diagnosed person would read this and think he/she was doing something wrong if their numbers weren’t as in range as these characters’.

Caleb read Power Forward and Lila, who is 6 and does not have diabetes, read Up for the Challenge. They both enjoyed the books. The stories kept their interest. Lila has been inspired to become a soccer player. Neither of them are the target audience so the impact would be better measured from someone who reads them just after being diagnosed. Nevertheless, the stories do stand alone as just good stories. Lila sought out Up for the Challenge to read a second time just because she liked the theme of friendship.

There was clearly purpose in the writing of these books. At the end of each there are questions to think about, like – did you feel the same way about having to wear a medical alert bracelet? Or – when you went back to school did you feel differently? I think that is a really great tool for parent and tween to start discussions to get feelings out there. I think that’s very valuable right after diagnosis when it can be hard to focus in on all the emotions you are experiencing.

I was happy to hear that these books are not the end – we were presented another tween book, a family cookbook and the promise of another sports oriented book soon on the way. What I saw and heard from the Lilly Diabetes people both last year and this year was a desire to understand what they could do to make things better for people with diabetes on the emotional side. Creating these books, when there is nothing else out there like them, in the authentic way that they have, I think is a great way to do it. I hope they will continue with books focused on some of the other issues our kids deal with through the varied stages of living with diabetes.

I know what you’re going to ask – “Where do I get these books, Lorraine?” Distribution is through endocrinologists’ office. Lilly Diabetes’ hope is that this will provide a link from real-life issues to real-life medical solutions with the proper medical personnel. Please ask your child’s doctor, and if they don’t have them, please have them ask their sales representative.

Lilly Diabetes invited me to attend an event at their corporate center and paid for my airfare, travel, hotel and meals while I was at the event. I was not asked to write about the event and the opinions expressed herein are my own.

Talking with Tony

Tony Rose, of Blogging Diabetes

My good friend, Tony, of Blogging Diabetes, asked to chat with me for his Podcast today. I told him he was crazy, because I’m a babbler, but he still went through with it!

I was so excited to talk with Tony. I feel like he and I have been friends since the beginning. He’s one of the first people I connected with on twitter and we hit it off immediately. He’s smart, analytical and kind. He’s a caring dad and husband. But he’s a Red Sox fan. 😉

In the podcast we talk about:

– Caleb’s diagnosis and the impact on Colin and Lila

– Dealing with diabetes at school and advocating for your child

– Letting go and giving your child more responsibility

my favorite: standard deviation

– the awesomeness of Team Type 1 and the tip I got from Tony’s podcast with Phil Southerland

– and so much more.

I only wish I didn’t babble so much and Tony spoke more.

I’m going to reveal the special surprise Tony had for me at the end – a short little interview with Caleb. I had no idea. It was so nice to hear the two of them chatting. Caleb, however, is nice and succinct, not like his mom.

So if you dare, I invite you over to Tony’s blog, if not to listen to me, to listen to any of his amazing podcasts, and if nothing else, check out his great video on standard deviation!

Mr. Incredible | Four Years Later

Dash for Halloween a couple months prior to diagnosis

It’s been a relaxing holiday recess. No running around for the normal activities. Just hanging out, playing, enjoying each other’s company and watching movies.

Among the movies we watched was one of my favorites that we hadn’t watched in a while.

Four years to be precise.

Four years ago Caleb was three and was a huge fan of The Incredibles. More specifically, a huge fan of Dash.

As we watched the movie, I realized Caleb was going through his Dash phase at the time he was diagnosed with type 1 diabetes. It all starting coming back to me.

I remembered being told by the pediatrician that we needed to go home and do nothing other than pack a bag and get to Yale New Haven Hospital as quickly as we could.  I went home, packed the essentials and ran downstairs to my “stash”.  It was after Christmas, but before Caleb’s birthday and I had some things collected for him. I pulled out a few. I remembered presenting him with the storybook featuring The Incredibles in the ER in an attempt to distract him while what seemed like ten people tried to hold him down to place an IV in his arm. I remembered being in his hospital room with him the following day, just the two of us, and giving him The Incredibles LeapPad game in an attempt to cheer him up. It didn’t work all that well.

I remembered how only weeks after being diagnosed Caleb had his fourth birthday party.  The theme was Disney’s Cars, but many of his gifts were Dash related, like…

…the lamp that also holds his medical ID bracelets…

ID Bracelet Holder/Lamp

…and Dash himself.

"I'm the Dash!"

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I remembered not caring how many gifts Caleb got that year when normally I try to be careful not to overdo it and spoil the kids. That year he couldn’t be spoiled enough.

I remembered him wearing the jersey that Grandma and Grandpa had given him for Christmas. He wore it during his hospital stay and also at his birthday party.

Breaking into the toy closet at the hospital.
Wearing his favorite jersey at his 4th birthday party.

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Then I remembered the doll Caleb made. He was given a plain, muslin doll in the hospital to practice giving injections. He made his doll “Dash”.

I remembered how we used to tell him that Dash was so fast at checking his sugar and giving himself injections that you couldn’t even see him do it.  I also remembered Caleb completely not believing us, but playing along nevertheless.
Dash has diabetes too!
Taking care of Dash

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I remembered the picture we took of Caleb days after diagnosis, smiling, getting a shot in his arm, to show his grandparents who had just left for their winter in Florida that he was okay. He was wearing an Incredibles hat.

"I'm okay Grandma and Grandpa."

There are a couple of “classic” pictures of Caleb with signs of Dash in them.  The day he started pumping with his OmniPod

First Pod - April 2007 - Can't tell but those are Dash PJ's

And his wink picture which has been featured in our local JDRF golf fundraiser pamphlet –

Dash PJ's yet again.

It only occurred to me as we were watching The Incredibles the other day, that this movie will forever be associated with Caleb’s diagnosis. There’s no separating the two.

Today is Caleb’s four year diaversary.  During the last couple of weeks he passed the mark in his life where he has now lived with diabetes longer than without it.

We’re not ignoring this day, but we’re not exactly celebrating it either. We talked about it this morning. I asked Caleb if he knew what today is and he replied, “Yeah, it’s the day we go back to school.”  I asked if he knew what else it is. He said, “Oh yeah. It’s the day we went to the hospital – cool.”  I wrote him a special note for his lunch box. He’s bringing his muslin Dash into school to share with his classmates. He gets to pick what we’re eating for dinner. He got some extra hugs and kisses this morning. But for the most part it’s just any other day.

Nothing incredible.

Even though we think Caleb kindof is.

Dash overload - January 2007
 

Caleb - 4 years later, January 3, 2011

 

She just wanted some milk.

Lila
Lila

Lila is four.  Caleb was just shy of his fourth birthday when he was diagnosed.  In both appearance and personality, Lila tends to be more like Caleb than older brother Colin.  For some reason that has always made me think that if either Lila or Colin were to develop D, it would more likely be Lila.  Not logical, but it’s what I have always thought.

Driving home from preschool the other day, out of the blue Lila says, “Mom, can I have some milk?”  Lila has always enjoyed milk, but with her meals.  She has never been one to drink much beyond that, and if she does, it’s water.  For about a month before the light bulb went on that something might be up with Caleb, he requested milk.  It should have been a reg flag, but I was clueless. “Icy, icy cold milk,” he wanted.  Visions of him asking for it are etched in my memory because at the time, I just thought he was growing.  But it was a telltale sign of diabetes that I completely missed.

So when Lila repeated Caleb’s request, a pit formed in my stomach.  I started to think about the other symptoms.  Frequent urination – nope, not at all.  Lethargy – no way.  Weight loss – I really don’t think so.

But I couldn’t get beyond the taboo milk request.

We arrived home, unpacked her backpack as usual, and sat down at the kitchen table.  We’ve done it before, so it’s not a big deal – I ask Lila if I can check her sugar. “Sure Mom.”  I prick her finger, the test strip soaks up the blood and the five seconds of wait, which seem like an eternity, begin.  I’m telling myself this is not a big deal. She’s just thirsty.  She has no other signs.

Then the number pops up. 257. IMG_1783

Well that was not what I was expecting.  “Lila, let’s wash your hands.” “Okay mom.”

Another prick, another blood soak – error.  Another prick, another blood soak – error.  I’m trying not to panic.  But I am now thinking of the logistics of calling my husband to come home.  Do we go straight to the hospital or call Caleb’s endo?  Who’s going to get the boys from the bus stop?  Can we get her pumping right now?  Will insurance drop us with two diabetics?  And most of all, the flood of memories of Caleb’s diagnosis comes back to me in a wave.  Lila is starting to get anxious with the pokes and now they hurt.  How am I going to to get her through what lies ahead – shots, insertions, more finger sticks.  I’m looking at her in the eyes, trying to stay calm, but my heart is breaking.

Another poke, another soak. 168.  Not what I was hoping for.

I finally give her the milk she requested and the cookies from lunch she didn’t finish at school.  We go about our normal routine although I have little ability to process thought.  We are communicating, but I have no clue what I am saying because I’m still thinking about the hours and days and weeks and years ahead.  I give it about fifteen minutes, pull out a completely different meter, and we do another poke and another soak.

104.

That’s more like it.

Just like that, life resumes to normal.  My shoulders drop a little from the relief.  I give Lila a big hug and she is oblivious to the future I envisioned for her over the last twenty minutes.

Just to be sure, I checked her sugar later that day, 84 and the following morning, 82.

All she wanted was a glass of milk.

Honeymoon schmoneymoon

IMG_1094When Caleb was diagnosed, we were told he would have to wait at least six months for an insulin pump.  We were told insurance would not cover it until we could show that injections weren’t working. I have since heard that some doctors will not prescribe a pump until a year after diagnosis because they prefer their patients not start until the honeymoon is over.

The good news is, Caleb did not have to wait to start pumping.  He had his first Pod on about 3 months after diagnosis.  The not so good news is that the first year and a half of pumping was a struggle.  Well, diabetes is always a challenge.  We still struggle. But for that first year and a half, stress and confusion were abundant.

I attribute this to a few factors:

(1) achieving tight control of a diabetic’s blood sugar is plain and simply hard and I was new at it,

(2) there is little in life that I haven’t been able to conquer that I really wanted to and for a long time I believed I could achieve consistently good BGs simply by putting in time and effort,

(3) using only fast acting insulin is a very different and more sensitive therapy than one with a longer acting insulin which seems to soak up  some of the “extra” variables, and

(4) we were managing insulin dosing with an erratic, fickle pancreas that produced some level of insulin without rhyme or reason and without notice, aka: the honeymoon.

Caleb’s honeymoon and its subsequent deterioration has never been medically tested. However, over time, I saw gradual changes in two areas.  His overall dosing would creep up and plateau and creep up and plateau.  Each time it flattened out, I would say, “Okay, the honeymoon is over”, only to be proven wrong and go through it all over again.  The other thing that changed was the reaction Caleb’s BG had to various foods. Every once in a while a food that never before posed any issue would cause erratic blood sugar readings. When first diagnosed, there were no problem foods at all.  Even pasta and pizza were just like everything else.  Pasta was the first to cause problems.  Then gradually pizza and chinese food joined the mix.  I would get the dosing down for them, only for it to change.  Then anything processed or fried started to wreak havoc.  Chicken fingers and fries became cursed foods.  Later ice cream and others.

Nights were by far the hardest with which to deal.  Between the hours of 8PM and midnight, Caleb’s insulin dosing was anyone’s guess.  We would go through periods of dinners of protein and veggies for weeks in order to figure out his basal pattern, to no avail.  His insulin needs would go up, up, up then down, down down. Up and down; high and low.  I had different spreadsheets for his basals, his carbs, his BGs.  I tracked his corrections and treatments.  I mapped his dosing and BGs by hour for any “challenging” food every time he ate it.  I even had a legend detailing various foods and their dosing “exceptions”.  I am a finance person.  I am accustomed to trends and analyses.  If I analyzed this long enough, and in enough detail, I would solve this puzzle. Or so I thought.

Then, when I thought it could not get any worse or more erratic, the bottom fell out.  Over just a few months, his basal TDD went from three units to six and then eight.  The breakfasts of oatmeal or Costco bagels that had been such friendly alternatives were now added to “the list” of foods.  All the rules had changed and things had to be relearned.  It was like going through diagnosis or pump start all over again.

Initially, each time Caleb took what I call another “step” out of the honeymoon, I would feel sad.  I would think his pancreas had completely failed and I mourned for it.  Of course, I was always wrong, and it would take another, albeit smaller, gasp for life and peter on.  We went through this so many times, that by the time it did go completely kaput, nearly two years after diagnosis, I was relieved.  With so many variables to manage when caring for someone living with diabetes, I was happy that the unpredictabilities a schizophrenic pancreas pose were no longer among them.

So perhaps, for some, it is wise to wait a year after diagnosis before pumping.  However, despite the grief I believe it posed for us, I am still pleased with our decision to start pumping quickly and would do it all over again.

The days “after”

Injecting Caleb with insulin within days of diagnosis.
Injecting Caleb with insulin within days of diagnosis.

I think I have always been considered by others as “strong”, “tough”, “independent”. When Caleb was diagnosed, I felt I had to be those things. Because that’s who I was after all. Why should this be any different?

What I remember of the days following Caleb’s diagnosis is Caleb being very strong. His grandparents had just left for their annual stint to Florida and they wanted to come home to see him. We took pictures of Caleb smiling and being “tough” so that they could see that he was okay and they didn’t need to rush home.

There were moments of anxiety. The occasional resistance to an injection. The refusal to eat. Caleb was three. I can only assume how he must have felt. That he now had all these rules. There was no compromising on so many new things. He was being forced into this box. Who can blame someone, particularly at that age, to put up a fight every once in a while? He did. But overall he was, and always has been, a champ with few complaints about diabetes.

I remember explaining things to his older brother, Colin, who was six years old at the time. His reaction was, “I wish this happened to me and not Caleb.”

I remember welling up at the sight of any picture of Caleb in my home. All those pictures were of a boy and a life that was gone. Those were picture of the “before”. We would never know life as it was in those pictures again. We were now in the “after”. And the after was dismal.

And the books. I went to the library and took out any book they had with a reference to diabetes. Those books were dreadful. There are two things that stand out from all those books: (1) the complications – the amputations, heart failure, blindness, kidney failure, etc. and (2) the story of the little girl at a birthday party who had to eat an apple while all the other kids chowed down on cake and ice cream. That’s what I remember of my early reading.

I had never cried so much in my life as I did in those weeks of “after”. I could not even remember the last time I had cried before this all started. Because I was “tough”, remember?

I remember all the things people said to try to make me feel better. How it could be worse. How there is so much hope for a cure. I remember knowing not a single person who directly knew about caring for someone with type 1 diabetes. I had absolutely no one to whom I could relate.

I can safely say, to date, those were the worst days of my life.

This brings me to why I started this blog. I want people to know that there are people who understand out there. I want people to find places like Children with Diabetes, and TuDiabetes a lot quicker than I did. I want people to find the right books like Think Like a Pancreas and Type 1 Diabetes, before they start reading those horrid other texts.

Help is here. It will be tough at times, but it will be ok.

We were lucky

Caleb just days before diagnosis.
Caleb just days before diagnosis.

So if you have read my other posts you know that we waited even when we strongly suspected that Caleb had type 1 diabetes. On New Year’s Eve, we did not rush to the ER or even call the doctor. We waited 2 days to call the doctor and didn’t even see a doctor until the day after we called. I did not know the symptoms and for weeks did nothing about his thirst and frequent bathroom use. I knew nothing about the risks.

When Caleb was diagnosed his A1C was 9.8. He was not in ketoacidosis. He must have been somewhat dehydrated, but not severely. He was not sick. But for the fact that there is no out-patient training for type 1 diabetes where we are, I believe he would not have been admitted.

We were lucky. Very lucky.

If you see the telltale signs of diabetes – thirst, frequent urination, weight loss, lethargy – do not wait. Holiday or otherwise – do not wait. Seek medical attention. At a minimum, buy an inexpensive glucose meter and check your blood sugar. If out of the normal range, seek medical attention IMMEDIATELY. Left untreated, even for just days, things can get out of control quickly. Here is a story that shows how quickly things can get very serious.

Do not wait.

When I knew

Caleb a week before diagnosis.  Notably thin, although we didn't realize why at the time.
Caleb a week before diagnosis. Notably thin, although we didn't realize why at the time.

With almost no knowledge about type 1 diabetes, we waited. It was a holiday after all – the doctor’s office wasn’t even open. We had just had such an amazing week. We celebrated Christmas and we were all home from work and school and everyone was getting along swimmingly. How could this be happening? Not us.

We started timing how often he went to the bathroom. At times it was in 20 minute intervals. I had been telling myself this was growth – he was always asking for “icy cold milk, please” and of course he had to go to the bathroom a lot with all that milk, right?

Okay, well he’ll get back into his routine when he goes back to school. It will be fine. We’re just out of sync.

So I pull into the school parking lot on January 2nd and as he climbs out of the van he says, “Mom, I want some icy, ice cold milk.” Oh, no. Please. You don’t. No way. Then I talk to his teacher. I ask her to look out to see if he’s going to the bathroom more often than normal and she says, “oh”. I say, “what?” Just hoping, my very last hope, that she knows something I don’t. That she will tell me about her friend or relative who went through this and the child grew out of it. That it’s a sign of this cold or that virus that is going around. But of course, she doesn’t say any of those things. She says that word again. She says, “diabetes”.

That’s when I knew.

I tried to control myself, but the tears overflowed. Nevertheless, not having a clue of the potential severity of the situation, I left Caleb at school and went to the DMV to renew my license. I have that license in my wallet and only I can see in the picture the puffiness around my eyes. It’s a constant reminder of when I was given Caleb’s diagnosis – by his preschool teacher.

We called the pediatrician early that afternoon when Caleb got home from school and told them our concerns and our desire to see a doctor. We told them that we believed he had type 1 diabetes. Knowing what I know now, I find it amazing that he was not seen immediately or sent to the ER, but given an appointment first thing the next morning. January 3rd is the official day of Caleb’s diagnosis.

But that was all a formality. I knew the day before.

When it all changed

Caleb the day after being diagnosed with type 1 diabetes.
Caleb the day after being diagnosed with type 1 diabetes.

He had been thirsty and frequently going to the bathroom for weeks. A quick internet search by my husband on New Year’s Eve, just hours before guests were to arrive, and we had the first hint of what was about to change our lives.

We now know these are telltale signs. We did not know it then. He was thinner, but we just thought that was part of his growth – he was no longer a baby after all.

On January 3rd, it was confirmed. We visited his pediatrician suspecting type 1 diabetes. After a urine and blood test, we were directed to the ER of Yale-New Haven’s Children’s Hospital. Do not pass go, do not collect $200.

We were told little: that his blood sugar was in the high 200s, and that someone without diabetes could eat an entire chocolate cake and still not go much above 140. But the bloodwork was being done to see for sure.

Before we ever got those results, Caleb was admitted. He was in a room with a 6 year old girl going through the exact same thing, just a day ahead of Caleb.

Caleb endured the IV. He endured the lancet and the injections. He was still three years old.

The mom of the girl next to us tried to console me within minutes of getting to the room. She showed me the needle. It was thin. It was flexible. She told me it could be so much worse. She had a friend whose daughter was dying of cancer. I know she was trying to help. But this did not help. I didn’t care that the needle was small and thin. It was still a needle. I didn’t care about that little girl or anyone else at that moment in time. All that mattered to me was that my little Caleb’s life was now changed. He didn’t deserve this.

I told my husband all I wanted was for him to grow. To grow normally. To be the tall, muscular young man I knew he would one day become before this diagnosis. I wanted him to be smart. That’s all I wanted then – for his body and brain to beat this disease.

I spent the night with Caleb in his bed that night. Brought him to the bathroom with his IV pole. Protected him from insensitive nurses. I slept little.

The following day we met with nurses, social workers, nutritionists, oh and the doctor who finally came to tell us that Caleb had type 1 diabetes.