Type 1 Diabetes - How Did We Know? Part 3 of 4

Since Kurt and I had already "figured out" the bed wetting incidents and "solved" that problem (haha, NOT really), and since Lily's hunger seemed to be just another childhood growth spurt, I would have to say that this next symptom was - for me - the BIGGEST red flag. Of course, it was over several days of observation before I saw the red.....does that make any sense? Oh well, let me explain.

Skin and Bones....post 3 hrs of IV fluids + insulin

Around the time that Lily was eating so much I started to notice that she was looking thinner. Unfortunately, this observation just solidified my 'growth spurt' theory. You know how it goes....most babies have cute little chubby cheeks, and thighs, and fingers.....and then all of the sudden they start to grow. Out and UP, out and UP. And really, in this case, my Mom was the first to notice. The Sunday before Lily's diagnosis we were at my Mom and Dad's house for dinner. At some point in the evening my Mom commented, "Wow! Lily sure has thinned out quickly!" I gave her observation about 10 nano-seconds of thought, adding it to my library of observations of the Kids' behavior from the evening, and moving right along.....! It must have been that night that the hunger and her "thinning out" first started looking like more than just a growth spurt. With each day that came and went, Kurt would come home from work and at some point in the evening I would ask him "Does something seem off with Lily?" or "Look at Lily, does she look thinner to you?" It's not his fault that he didn't notice anything wrong, and that his answer to my questions was "no". The thing about Type 1 Diabetes is that the onset is sudden, and when Dad is only home for a couple of hours during the kids awake time, it would be easy to miss.

There were 2 or 3 times during these last few days before her diagnosis that Lily was unusually cranky, quiet, and lazy. At first I didn't think anything of it, but by Sunday night, and then with each day after that, I stopped asking her to do extra work. Sigh!  In FACT, that Monday (March 28, 2011) during the day, just after lunch, I asked her to run down to the basement and grab Luke's blanket for nap time. "Ugh! M-O,O-M! Why do I have to be your servant?" (lol!) I gave her my, now common reply, "because you grew up! I've told you since you were a baby to stop growing up and since none of you have listened, you are now going to be my servants! :) " Well, she went downstairs to get his blanket, and right when she got up to our main floor I said, "okay! Let's go upstairs for stories!" She said, "Noooo! Up MORE stairs? I'm too tired, it's too far.!!"

It was at this point that I KNEW something was wrong. I just didn't know what it was. Anytime I asked Lily if she was feeling okay, she was just annoyed and responded with a quick, "MOM! I'm FINE!! Nothing's wrong, O-Kay?"

Moving from the ER to the 3rd floor....

Looking back now I understand what was going on during these question and answer sessions. First and most importantly, she's FOUR.  Developmentally speaking, she's at the age where she's just learning to recognize her physical symptoms and then be able to put it into words. Secondly, Lily has had a pretty good case of 'third child syndrome' for a while now, and one part of that syndrome is an adamant refusal to be left - out - of - ANYTHING. Period. Most kids have to be really, really sick to  willingly stay inside during playtime. Tack on the blessing of being the 3rd of 4 children and you might as well have an ox in the mire (mud-pit), an ant stuck in honey, or better yet - super-glue stuck on your fingers. You get the point, right? So, for several days she would push herself in order to participate in what was going on around the house and/or neighborhood. By Sunday she had stopped participating in the fun, but still wouldn't admit that there was anything wrong. By Tuesday morning she wasn't saying what was wrong, though I'm pretty sure that if she put her head up long enough and took her thumb out of her mouth far enough, she still may not have been able to tell me.

Our brave Lily w/ Nurse Natalie 

 Every day that went past made me realize more and more  that there was something really wrong. She was getting thinner by the hour, she had circles under her eyes, she was sucking her thumb more all of the sudden, and carrying her blankie everywhere....and then I could count her ribs and just a few clicks forward I was counting the bumps that made her spine.  On Wednesday, the 30th of March she had already spent 2 days officially 'sick' though with what I had no idea. That day she had gotten thin to the point that she weighed noticeably less when I carried her - everywhere, btw - and she didn't want to straddle, or wrap her legs around our waists when we carried her. She felt like she was going to break!

For almost 2 weeks I had watched our precious girl with a 

nagging feeling that something was wrong. 

Part four of our story is the best part  of the story, 

the part of our story where a very bad dream

 is magically turned into the most beautiful miracle of our lives.

Stay tuned... :)

Type 1 Diabetes - How Did We Know? Part 2 of 4

"You are STILL hungry?" 

My eyes would pop out of my head as I  turned to look at my husband, 

who's eyes would then pop out of HIS head!

"Have a drink of water honey, you are probably thirsty ." Then,

"Honey, did you know it takes your body 20 minutes to know that it's full?"

Of course,  NOW I know why she was so hungry. But during the middle of March all I could think was "How on EARTH are we going to be able to afford to FEED these kids (we have four total) at the rate they are eating?" Laughing Out Loud now, but the Sunday before Lily's Dr's appt and subsequent diagnosis I had drawn some (deeply profound ;)  analogy during the Sunday School lesson about how God knows how much or how little we need and how he'll take care of us. Lol! I commented on how many times Kurt and I had exclaimed to each other during the previous weeks about how MUCH FOOD our little munchkins are eating.

"Eat Slower kids!" 

     "Make sure you start with a nice glass of water!"

    "No grazing guys!" (that one's been around for a long time) 

   "Remember, if you get DoWn from the table, that means you are finished eating, so make sure you're full! Because you can't get down to play and then come back later for more."

Unusual hunger is another one of the symptoms of Type 1 diabetes. The trick is in figuring, or realizing that a child's hunger may be something MORE than a looming growth spurt. In fact, while Lily HAD been eating quite a bit a mealtimes, AND grazing so much that it had become an issue, the thought that her hunger was linked to Type 1 diabetes never even crossed my mind! Lily has an older sister who is 9 and an older brother who is 7 and as all parents know, kids eating patterns ebb and flow.....like the moon (soooo poetic huh? ;) But seriously, they do! Sometimes they'll eat next to nothing for several days - and that may be due to a growth spurt or perhaps due to a mild cold....any number of things.

The day that Lily was diagnosed was Thursday, March 31, 2011. Her doctors appointment was at 5:30 pm and we were looking forward to going to my Grandma's 80th birthday party which was at 6 pm. (A very COOL 80 year old btw - she texts her grand kids :) When I tucked Lily into bed for her nap, she told me she was going to sleep for a l-o-n-g time so she would have fun at Grandma Rini's birthday party. When the PA came in and told us to head straight for Primary Children's MC  ER Lily burst into tears! Not because she was going to the hospital, but because she'd just heard that we wouldn't be going to the party!!

Of course, we had to drop her 3 siblings off to my parents, who were at the Birthday party. So we took that chance to give Grandma her gift, have my Dad and Kurt give her a blessing, and get her something to eat. At this point in our story, the knowledge that I had about Lily's disease was quite limited, and some of what I knew was just plain wrong. When it came to eating, I  was thinking that whatever Lily ate on the way to the hospital would be her "Last Meal".

"She had diabetes, that means no more sugar!" But boy was she hungry! She ate a huge hamburger, and a mini cheesecake, then since she asked for Mom's cheesecake, I gave that one to her too. "Poor girl, she'll never have another cheesecake..."

In the end, I was wrong about all of it. Her hunger wasn't just a growth spurt - And - those little cheesecakes were not the last treats she would eat. I would come to realize over the next 10 days that most of what I knew about diabetes centered around the most recent research concerning Type 2 Diabetes. Type 2 Diabetes has been around for decades. 

Click Here to see a timeline of the history of Diabetes.

However, the differences in Type 1 and Type 2 - and did you know there is a Type 1.5 ? - are huge. The reason we are hearing so much about Type 2 is because the number of adults and children who suffer from this variation of Diabetes has reached epidemic proportions. Also, there is a lot that can be done to prevent Type 2 onset. "Prevention is the best medicine", or so they say. And why not! 

When it comes to Type 1 Diabetes though, for now, we don't have the *causes, *preventions, and *cure. The greatest hope for a cure lies in the research that has been done on Stem Cells, and more specifically, Embryonic Stem Cells. The obvious debate on both political and moral platforms has stalled progress on finding THE CURE. No worries though, stalled progress does not equal stalled HOPE. What we DO know about Type 1 is that there seems to be a strong genetic factor. And the best news is simply that we know WHAT is going on, and we know HOW to both Monitor and Manage a child's blood glucose levels.

So, to wrap up.... Lily was hungry. Really, really hungry. She would eat, and be SO full, but then come back for more. Her body was lacking the insulin needed to grab the sugar out of her blood & feed the rest of her body. So her body sent signals to her brain, and to her tummy, that it needed MORE. 

I found this video a couple of days ago. With all of the learning, concentrating, organizing, watching, monitoring and nursing that I've participated in during the past two weeks, I haven't found, or taken the time to cry. There were a few moments in the hospital that the tears tried to edge their way out, but I was afraid that if I started, I wouldn't be able to stop! It's been much better for me to be able to put my efforts into everything that is required from day to day - but when I found this video, I lost it. I'm grateful that I found it during nap time so Lily or Luke didn't have to see me cry. The hesitation before each shot, and poke - the pale face and limp little body, the brave little girl who told me yesterday during EVERY single needle jab that she "doesn't WANT to have diabetes!" Not with a whine. Just a tender, child-like statement that carried with it all of the humility, meekness and willingness to submit to the trials of this life that our Savior exemplified during His life. She's my hero. And I'm one lucky Mom.

Type 1 Diabetes - How Did We Know? Part 1 of 4

Lily Eva Jensen!! Abt. 2 months ago.

One of the most common questions that we have been asked during the past few days is, "How did she get sick so suddenly", and "How did you know something was wrong?" Yesterday I started texting the answer to this question to a friend but stopped halfway through, telling her that I would finish the answer on my blog. It was much to long for a text, plus, this way, I could answer the golden question once.

*********

A quick 'google' search could easily take you to a dozen medical websites with  pretty much the same list of symptoms. Beginning with the most commonly recognized and prominent traits - Excessive thirst and increased urination.

This symptom showed up in Lily around 2 weeks before we finally took her into the doctor, but to say that our first thought was diabetes would be FaR, fAr from the truth! (unfortunately:( ) But, like most parents,  any symptom or problem is usually addressed through the process of elimination. In Lily's case, around the time of March 24th Lily began asking for more and more water. We had a conversation about gulping, which just seems funny, looking back at it.  She was gulping her water and I taught her about swallowing air and how that could give her a tummy ache. Also, we discussed Princess Manners, and gulping water or slurping soup certainly didn't fit the bill!

Over the next several days Lily had 3 or 4 instances where she wet the bed. This was surprising to all of us since she had never had an accident and had been potty trained for years! When I asked Lily what happened she said she didn't know, "Mommy, my body didn't even TELL me to go potty, but I woke up and my bed was wet :( ". As parents, we looked at these incidents and saw two possible causes. First, she was obviously drinking too much water at bedtime. "Sigh! these kids... " we thought, "will they NEVER stop finding excuses to get out of bed?!!!" Second, the toilet right next to the kids rooms was out of order. I wondered if the journey down the hallway and into Mom and Dad's room was a bit intimidating for a four year old.

To solve these two problems we first drew a limit to how much water she could take to her nightstand - ONE 16 oz. cup should be plenty for anyone, we said. (Of course, NOW, I feel horribly guilty for restricting her water. I could almost cry!) Secondly we put a nightlight in the hallway, made sure the books from bedtime reading were picked up off the floor, and left a light on in our bathroom so that she could easily see the pathway. Ugh! Guilt!!! But, at the time, the problem seemed obvious and our solutions worked. No more accidents, though she asked for water immediately after she woke up and all throughout the day.

Hindsight is 20/20. Looking back it seems so clear! But two+ weeks ago this tell-tale symptom of Type 1 Diabetes seemed to have both obvious origins and easy solutions. If Lily had been an only child, these night-time wetting occurences, as well as the onset of the symptoms would have surely stood out - maybe even being alarming. However, Lily is one of FOUR kids - which makes for a very busy household. Her younger brother was diagnosed with food allergies to milk, peanuts, and eggs six months ago also. Needless to say, it took some time for her symptoms to become well defined pieces of her diagnostic puzzle.

Part 1 ? I know, I know! Why on earth can't I find the time to type out an entire book about the past three weeks? Or maybe the question is why would it even take a book? Lol! Well, I'm a writer, a reader, and a talker - so put those three things together via blog and what you get is my thoughts written out for you (and in the future, Lily) to read! More time? Well, for now - I have about 5 minutes to hop in the shower before Lily's next blood check and lunch. Thinking I should seize the moment, sniff, sniff.... ;)

Happy 4th Birthday 6/9/10

Blankie # 2 via Grandma Susan's Magic Blankie Machine!

**A few minutes ago Lily and Luke were getting ready to go out front and play in the sunshine with their Daddy. I asked Lily how she was feeling, and she said "Fine....but I still have diabetes huh Mom?" I smiled and said "yes honey, you will always have diabetes, for the rest of your life." to which she said "Unless we find the cure! Mommy, maybe if I eat 100 bananas that will work for the cure! What do you think?!!!!!" I think.......BRING IT!!!! Oh yeah! We will find a cure, you betcha!!

Juvenile Diabetes - Type 1

It's been quite the past few days. This past Thursday at 5:30 PM we took our girls to the Doctor and were immediately sent with Lily down to Primary Children's Medical Center in Salt Lake City. (aprox. 40 minutes South of here). You know how the saying goes, hindsight is 20/20? Well, the time that it took to drive to the Emergency Room was just enough to begin the process of putting several pieces of Lily's puzzle together. Right now Kurt and I are franticly working to learn about how to care for this little girl who so quickly became seriously ill. With all that there is to do, and learn, the miracle of God's hands in our lives has been so evident that I can honestly say I have more to be grateful for than ever before. Is this a life changing development? Yes. But at the forefront of every moment is hope. Hope, and gratitude. Gratitude for the medical and technological advances that have made Juvenile Diabetes into a disease that can be monitored and manages. Twenty or Thirty years ago Lily's diagnosis would have been frightening - a life filled with uncertainty. But now, so much has changed, not only in the way of medical developments but also in the way of Patient and Family support.

The first long night at the hospital was surreal. We must have seen half a dozen doctors and even more nurses. But it wasn't until around midnight when a nurse was telling me about all of the organizations dedicated to Type 1 Diabetes: Juvenile Diabetes Research Foundation, The American Diabetes Association, Children with Diabetes, and the Foundation for Children and Youth with Diabetes - which is a CAMP for kids. That one sentence, "They even have summer camps just for children with type 1 Diabetes" was the sentence that hit me at the core. Summer Camp? Like, meaning, she couldn't go to any normal camp, so they have camps just for her?

I have so much more to say, and write - about the dozens of miracles, the disease itself, the unexpected impact on our other kids, and the way these things resolve. But for now, I'm off to bed. With good news though -

Lily's Blood Glucose just tested within her normal range!!!

Wahoo!!!!