Tuesday, April 30, 2013

Eleanor says "Thank You" for Jerry The Bear

Eleanor and I were stunned and thrilled that the entire cost of Jerry The Bear was raised for her in about 4 hours! What amazing friends we have that care so much about us!  And some of the donations came from people we don't even know! We really don't know how to say "Thank You!" loud enough, or clear enough, but you can be sure that it's coming from the bottom of our hearts with jubilant joy!  Thank you John, Melyssa, Lena, Beth, Bekah, Kimberly, The Mrla-Grays, Misty, Parker, Kady, Joshua, Summer & Sheridan.  If you didn't get a chance to donate, and you wanted to… there's going to be another chance…
…because Eleanor is in a tizzy to get started on a project to provide bears for other little kids with type 1 diabetes, especially kids who are newly diagnosed, just like her.

In fact!  She is well on her way already! Eleanor got a note from Aaron, Hannah & Jerry himself! They're the folks at Sproutel who designed and developed Jerry.  When they got wind of her idea to help put Jerry The Bear in the arms of other kids like her, they wanted to help her reach her goal.  We'll be talking with them soon, and moving forward right away.  For such a little girl, she sure has big dreams and a big heart!
The Davidson Ambassador program operates on an annual schedule, so she'll have to wait until application season to get that part of her plan underway, but that doesn't mean she can't get to work on her own in the meantime, the ambassador program is  meant to offer guidance, support and education.  Kind of the way Jerry The Bear does!  She can do the work without them, but they sure will make her feel better!

My stuffed animals from childhood are absolutely real. I tried to treat them fairly: sleeping with them each in turn to prevent hurting their furry little feelings.  They were there for me when I was hiding under the covers, scared of a funny noise in the dark. They were even there for me when I needed to vent some frustration and throw them across the room.  They never minded taking the heat.  Like Raggedy Ann & Andy, They'd land with a soft flomp and just keep right on smiling, because it was painted on, of course!  (Though I wouldn't recommend throwing Jerry, plenty of other stuffies can bear up!) And, like the Velveteen Rabbit, they were there for me when I was sick in bed.  That's exactly what Jerry The Bear does too.  He's a comfort to a child who's trying to sort out all the new feelings that come with a Type 1 Diabetes diagnosis.
Many of my favorite fluffy stuffed friends meant so much to me that I saved them forever. A very select few, like Sammy, pictured right,  have been granted the highest honor of being handed down to Eleanor, or one of the boys. Anyone who's read the Velveteen Rabbit or Winnie The Pooh knows that our friends that are all stuffed with fluff are some of the longest lasting most loyal friends we have in life.  Ever.  Thank goodness we don't have to burn them all when a child contracts Type One Diabetes!  There's no other love quite like it.  Tell me how your own bestest stuffed friends got you through the tough times in the comments section below.  And once again, Thank you Beary Much for all the donations!  We hope you'll be willing to help Eleanor with her new endeavor as well!  

Thursday, April 25, 2013

Jerry The Bear for Eleanor

“Give what you have. To someone, it may be better than you dare to think.” 
― Henry Wadsworth Longfellow

As soon as Eleanor watched the video for the Jerry The Bear, she had her heart set on having him.  Of course, I cringed when I saw the price tag: $250  On the other hand, Jerry is just exactly right for her.  Even the cover photo here on the blog includes all of Eleanor's stuffed friends.

Every time she gets an insulin shot, she gets a "squeezy" friend to hug when the needle goes in.  She has specifically expressed dismay that she is "the only one," and Jerry is meant to help kids with Type 1 Diabetes feel less alone in the world.  So, there's no argument that Jerry The Bear is just what the doctor ordered.  But, there are so many other things she needs that are coming first right now.  So, while I think he will help her and make her feel better, comfort her, be a pal who has diabetes just like her, it was tough for me to make this purchase a priority. She saw the video and, oh! how she wanted Jerry.  Right away. I sat here thinking, 

"How am I going to justify this?" 
but on the other hand, "how am I ever going to tell her no?"

So, I sent a text message and asked Michael if he thought we could afford it.  He didn't answer… not a good sign.

Then I posted a wistful message on Facebook, with a link to the cute Jerry The Bear video, and my beloved friend John almost instantly set up a fund raiser to help gather donations for Eleanor to have her own Jerry The Bear.  We rocked and rolled along.  By mid afternoon we were nearly there.  Frankly, at this point, even just paying the difference feels far more tolerable than it would have to scrape up the whole thing.  I adore my fabulous friends and family.

I admit, I had a little twinge of guilt at the prospect of taking donations, we are not hurting for money. On the other hand.  Jerry is not for me.  Jerry is for Eleanor.  Somehow that changes everything.  I would not have bought him for her.  I would have just hoped that she forgot about him.

But, my friends and family both near and distant wanted to do this sweet thing for my little girl. Amazing!  I know what it's like to want to help, yet not know how.  So there's a blessing in that too.  This was a way for people who love her to touch her life.  John had a stolen phone returned to him yesterday, and he was in just the right frame of mind to, as he put it, "pay it forward." I'd like to think that this way, everyone wins. Especially because…

Eleanor posing with some of her "Squeezies." She holds onto a stuffed friend
each time she gets an insulin injection.  The Lantus she gets at night stings the most.

…by far the best thing to come out of all of this, is that it has inspired Eleanor's generous spirit as well.  She has decided to start an organization to help raise money to purchase Jerry the Bears for other kids who are young and newly diagnosed with Type 1 diabetes.  She plans to apply to the Davidson Young Scholar Ambassador Program so that she can have mentorship and support to help her new organization succeed.

She says when Jerry gets here, "I will make an alarm and I'll try and wake up as fast as I can, and I will give him juice, even if we're super busy, I will take care of him!"  Another way for her to foster that nurturing heart.

Eleanor brought her dog, "Anna Cuddles" with her to the Krew of Barkus Parade
so she could enjoy seeing all the other doggies!

Sunday, April 14, 2013

Caught in a T1D Back Seat Driver Tug of War

We are absolutely brand new at this. It doesn't matter that the diagnosis was an entire month ago. We're definitely newbies. On Diagnosis Day I felt like:
Easter Bunny brought a Hello Kitty Hat
but NOT a chocolate rabbit
I was cruising along at highway speed,

when suddenly, I looked around, found myself in an unfamiliar city,

and then, someone handed me a map,

but they wouldn't let me pull over to look at it.

I just had to keep driving, and try to navigate as I went along,

meanwhile, I was still dodging other traffic; checking my speed; and keeping an eye on the fuel light.  (I think fuel is an analogy for groceries!)

I've been so thankful to have already found dozens of other parents (mostly moms) of T1Ds, lickety split!  A handful of friends contacted me, almost immediately, in the very first hours and days, and connected me with friends of theirs who also have a child with Type 1 Diabetes.

Additionally, I myself, sent an email from the hospital to the one mom in our homeschool community who has a son and husband with type 1, and she was warmly supportive, though wistful that there was another among their numbers.  So many people have been so graciously open and generous with their time and support, that I've even felt overwhelmed occasionally.  My sense of obligation to respond to Facebook messages, texts and emails has at times left me with pangs of guilt… but not for long. My first obligation was to Eleanor.  So that was that.

But here's the thing: I've noticed another source of tension, and this one took me a bit by surprise.  I have found that some people who have been living with type 1 diabetes for a long time, are very quick to make a judgement on my conservative choices regarding her care.   They are opinionated back-seat-drivers, interjecting their idea of a better route; telling me, "You're doing it wrong."   Perhaps they are so concerned about common misconceptions about T1D; they are so hungry to prevent fostering those misconceptions, that they are insensitive that I need to get up to speed.  They seem to have forgotten how cautious and careful a parent of a newly diagnosed child wants to be.  They want me to take the road at top speed, but I don't know the twists and turns the way they do, so of course I hit the brakes.

In my first blog post, I mentioned one of the things about which I am sad, is that Eleanor wanted a chocolate bunny for Easter, but that she didn't get one.  Following that post, I had a handful of messages from my newfound peers.

What they said, shrilly, was, "She CAN have the chocolate rabbit!"

They have experience and they forget or don't care that I don't. They are pulling me one direction, it's like peer pressure, while I frantically try to understand and follow the clinic's instructions, which pull me in another.  The experienced patients and parents want so badly to prove to the world that T1Ds can have a chocolate rabbit, that they'll shove the chocolate rabbit down my throat at all cost.  They certainly don't want me to suggest that T1Ds can't have the chocolate rabbit (not that I did).  They themselves struggle and vacillate between telling me, "You should seek the advice of her endocrinologist," and telling me, "damn the torpedoes, and snarf that chocolate rabbit!"

I want to point out that my blog post never said "Type 1 diabetics can't have chocolate rabbits,"
I hate the stupid advice I get over and over again to "just fit it into her meal plan."
Let's ponder that.
At Easter, two weeks post dx, Eleanor's meal plan looked like this:

Breakfast 35 - 40 g carbohydrates
Lunch 35 - 40 g carbohydrates
Snack 15 g carbohydrates
Dinner 35 - 40 g carbohydrates

See's Candies makes a very popular 10 oz. chocolate rabbit.  Let's take a look at the nutrition facts for 1 oz of milk chocolate candy (please note, the rabbit would be 10 times the amounts on this label!)

So, you following so far?  The entire 10 oz. rabbit would be 170 g of carbohydrates.  So, surrrrrrre! She can eat it, no problem! Of course, she'll have to skip all her meals and snacks for the entire day AND breakfast the next day to make it fit in her meal plan.  Telling me that she can have it, while not, strictly speaking untrue, sure as hell isn't very realistic is it?

Eleanor's pediatrician sent a basket of 
cookies and candy after her hospital stay. WTF?
Hmm, okay, so, that won't work, what if we divvy it up over several days?  Well, we could do that, but even if she had a wee bitty smidge of it, each day, as her 15 g-carbohydrate-afternoon-snack, it would take 12 days to eat it all.  Let's not forget that if her snack consists of 1/12 of a chocolate rabbit, she's going to be hungry, because 1/12 of a chocolate rabbit is not going to fill her up.  The conclusion I draw here is that, yes, technically, she could have gotten a chocolate rabbit for Easter, but the restrictions and limitations would have made it punitive and cruel: dangling the carrot and snatching it away.  Considering, that we have candy left over from Valentines Day; boxes and boxes of Girl Scout Cookies, and the basket of goodies that her pediatrician (?WTF?) sent after her hospital stay, all of which we are already trying to slowly ration out and "fit into her meal plan," a chocolate rabbit would just muck things up even more.  What would be the point? The thing would have collected dust before she could eat it.

We were put on a relatively restrictive meal plan coming home from the hospital.  I have since spoken to other parents who were given ratios, and therefore more liberty, right from the start.  I don't know the reasoning behind the plan we were given, but I do know that any changes to her prescribed management plan come too slowly for my taste.  The original treatment trajectory we were given, would have meant that we made NO changes to her meal plan until her first follow-up appointment with her endocrinologist.  That would have been April 22, about 6 weeks after her diagnosis.  I try to imagine what it would have been like, to keep her on the plan I outlined above, for 6 or 7 weeks, and I go insane.  Fortunately, it didn't work out that way, but that's a subject for another post.  What is important is to understand the the clinic staff are pulling me in the opposite direction from the "old pro" parents.

In addition to the comments about the chocolate rabbit, another question I got, doubting my judgement, was, "Why can't your daughter go to Girl Scout Camp?" It came in an accusing tone, in that same shrill voice.  Before Eleanor's diagnosis, we had planned to send her to Girl Scout camp for a week.  We read the brochure about the horses, the archery, the arts-and-crafts, the campfires, the s'mores, the songs,  and the friends.  She was jazzed!!  However, once we got home from the hospital, I was on such uncertain ground, I didn't have a clear idea what diabetes would mean.  I was well aware that Girl Scout camp was many weeks away.  One could argue that there was plenty of time to sort it out.  I realized that there would almost certainly be countless changes, not only in her management plan, but her knowledge, skills, and comfort level before then.  Still though, I couldn't be sure that sending her to Girl Scout camp was going to work.  I did some quick Google searches and I found evidence that the Girl Scouts themselves don't allow scouts with type 1 diabetes to attend their camps:

I spoke with at least one other parent of an older Girl Scout with health issues, who told me that health care at the camps is a "long standing issue." On the website for our region, I found this:
We are committed to accommodating all girls, and our goal is to provide a positive camp experience for everyone. If your camper has any special needs (physical, behavioral, etc.), please contact us prior to enrollment to see if we can properly care for her during her stay at camp. (emphasis mine)
"See if we can" does not inspire confidence.

I was well aware that I could really push, get an attorney, pull out the BiG Guns.  I knew that.  But, I wasn't even sure I wanted to send her.  I wasn't even sure I wanted to fight that fight, win it, and then be scared to death to have her there.  It only took a moment to discover that the camps are not already set up for her care.  Getting her a spot was going to mean a battle. So, I let it go.  She doesn't have to go this year.  I have enough on my plate just regaining our equilibrium.  I don't need to take up arms to get her a spot at Girl Scout camp, that I'm not even certain I want her to have.  But when I mentioned, in a forum for parents of kids with T1D, that she was disappointed not to be attending.  I got grilled by the experienced parents,

"Why CAN'T she go to Girl Scout Camp?!"

"She CAN have a chocolate rabbit!!!"

And I suddenly felt like I ought to be ashamed of my fear, and the choices I made in it.

Like the chocolate rabbit, I never said "my daughter will never go to Girl Scout Camp." I don't want to disappoint her.  Disappointing her is hard enough, without having other parents sit in judgement of me.  We're all just doing the best we can out here in the front lines.  I have heard the adage that parents of T1Ds should ask ourselves: "Would I have let her do this before the diagnosis?" If the answer is, "yes," then we should find a way to make it work with the diabetes.  I agree. completely.  But that doesn't mean we must do it all RIGHT NOW.

So, while I agree that it's important NOT to promote and foster the all too ubiquitous misconceptions about Type 1 diabetes, it's also important to be supportive of the frightened newbies.  Give us a chance to get our bearings.  I could barely sleep for fear of not keeping an eye on her in those early days, much less consider sending her off to camp more than an hour away.  I need the endocrinology clinic on my side.  I need to follow their meal plan, especially right now, because I need to count on them in the future. The way to do that is by building a positive trusting relationship with them from the start.  I want to get off on the right foot.

So the "old pro" parents pull one way, and the clinic pulls the other, and I'm frustrated and I'm caught, and I'm scared, and what I need is a lot more, "you're doing great"

"keep up the good work."

"you know your daughter best."

"We're here to help, if you have questions."

And a lot less tug of war.

Thursday, April 11, 2013

Everybody Needs Diabuddies!

It came to our attention pretty early that Eleanor's stuffed animals had all been diagnosed with diabetes at the same time she was! We were shocked! There must have been a trigger virus that swept through the plushie kingdom.  Her room has turned into a diabetes-managerie-clinic.  Many evenings, they all get lined up and have their blood glucose checked and are administered their insulin all in a row.  It's really been a wonderful way for her to feel like she is not alone.  I recorded this video of her on March 22, only twelve days after her diagnosis. Knowing how time passes differently in childhood, I imagine that those 12 days feel much longer to her than they do to me.  She seems so at ease.

Eleanor hugs her first "Diabuddy" Tasha
Dallas Children's Medical Center
In addition to her little animal friends, we have been able to contact a seven-year-old girl, with whom Eleanor has been exchanging emails.  I can tell that Eleanor responded immediately to the relationship. She lit up when I suggested the correspondence, and then reminded me often until I got the contact information so she could write to her.  Even though Michael has diabetes, knowing another girl her age with type one diabetes "just like her" is a comforting connection.  She calls Caroline her "diabuddy" and she's looking forward to meeting other diabuddies too.  I will work on finding her some local friends.  I understand the JDRF has family gatherings, picnics, and so forth. What a wonderful way to connect with other T1 families. 

Eleanor learned the term "Diabuddy" from Diabetic Danica We first found her YouTube channel when looking for videos of people who use the Dexcom G4 Continuous Glucose Monitor, or CGM, but we fell in love when we watched her diabetes parody of "Call Me Maybe."
Eleanor has already, once or twice, expressed some self consciousness about getting insulin injections, or doing BG checks in public.  On the other hand, she invited her friends to come watch her go through her pre-lunch routine during a play date.  I think she'd like for her friends to see it as normal as possible.  Perhaps the more open we are about it, the less weird she will feel.  I think kids adapt to atypical circumstances much more quickly than adults do.  Michael says it's because they've had such short lives that everything is new and novel anyway.  I'm sure time and repeat exposure will normalize it for her friends, and for her.  (And for me, and the other parents!)

The clinic at Dallas Children's has offered to do a kid-friendly education class at her school classroom.  Since she doesn't attend school, I am hoping I can arrange a similar program, to which we can invite our homeschool group. I'd like to schedule it in the late afternoon, so Eleanor's friends from dance class, and Daisy Scouts who attend school can join us as well.  Already, in the 32 days since diagnosis, I have discovered just how little knowledge most folks have about diabetes.  I've come to understand that there's a fair amount of unpleasant emotions, even resentment among type 1 families, because there is such a glut of information about the far more common Type 2.  The uninitiated, all too often jump to conclusions that just aren't accurate.  I don't fault anybody! But I haven't had a chance to grow weary of it yet, whereas many of the other moms who've been at this for years, really have.  Even with Michael having diabetes I didn't know as much before Eleanor's diagnosis as I do now. But…that's a can of worms for a-whole-nuther post!  If we can offer an education opportunity to a few of our pals, we can make a small difference in the knowledge base; answer questions the kids are asking anyway; Eleanor will feel less conspicuous; and everyone will learn. Everyone wins! YaY!

Eleanor showed these friends her lunchtime routine.

During the Sunday Matinee last weeekend, I needed to do a quick BG test back stage while the children in the cast were all lined up waiting to go on stage.  Many of them started asking questions.  Some of them assumed she had gotten hurt, because they only looked in time to see me squeezing blood from her finger.  Of course we were backstage and we needed to be quiet, which meant we couldn't answer their questions without being disruptive.  I did whisper in one very young boy's ear, "I will explain it to you later, but we need to be quiet right now."  The experience convinced me that it would be helpful, especially with children she's friends with, to do a pre-emptive  mini-lesson.  Head off those questions at the pass before a small person becomes alarmed.

For now her email connection and stuffed animals can help, but I'm sure that over time, she'll collect plenty of real life diabuddies with whom she can compare notes and be in the "same boat." I want that for her, because everybody needs diabuddies! 

Tuesday, April 9, 2013

More on the fabulous "Honeymoon"

Well, I guessed right.  Last night was indeed a long night.

It began when we gave Eleanor tortellini for dinner. It's her favorite.  We had been giving her 3/4 of a cup, because that is 40 grams of carbohydrates, and is the range we were originally given for every meal when released from the hospital.  But it never filled her up.  She loves the stuff.  So, last night, there was about a cup and half left.  Since she was put on ratios, I knew she could have more, if she wanted it.  We were all eating leftovers for dinner.  In all the comings and goings for her rehearsals and performances, the fridge has filled up with bits and pieces of many meals.  It was a good time to scrape dinner together.  I weighed the remaining tortellini on my nifty new kitchen scale and showed it to her in a bowl so she could gauge the amount.  I asked her if she thought she'd eat it all, and she said, "yes." Then I cut up some strawberries.  Strawberries are one of Eleanor's favorite foods in all the world, so now she is looking at a plate of her mostest-favoritest meal!  Yay!

Eleanor outside the Campus Theater
before the Matinee on Sunday.
She is portraying Princess Ying Yaowalak.

I calculated the carbs and dosed her up.  Then… it took her an hour to eat it all. She wanted it. But she sure is a slow eater.  We had worried, even in the hospital that her slow eating is a potential problem, but it hasn't been.  Our concern was that if we dose her with insulin and then she eats too slowly, she could have a low because the insulin catches up to her before the food does.

After she ate she came to me and said, "That was toooooo much!" Her tummy was stuffed!  I told her, gently, not to do that again.  I explained, "If your tummy is full, we can always give you a little juice to cover the carbs, you don't have to stuff yourself! That's no fun and it doesn't feel good." She nodded, but not long after she came back to me and asked me to check her.  56!

I got her some juice and she slumped down on the kitchen floor, lows are very unpleasant to watch. - I can only imagine what they feel like.  Ugh.  She appears to just collapse.  So I carried her to the couch near the TV.  I know her lows take a while to get over, so I found The Sound of Music on iTunes and snapped it up right then and there to give us something to do.

There's a story there too.  It's always been one of my favorites.  Isn't it everyone's favorite? :-)  But earlier that day, a friend from the cast of The King and I had told me about summer auditions for a production of it.  She suggested that Eleanor would make an adorable Gretl and said I should take her to audition.  I totally agree! Eleanor would make such an adorable Gretl! oh my! (I'm not biased or anything, really!) Since Eleanor had never seen it, but set her tiny little jaw and became doggedly determined to audition the moment she heard the suggestion, I figured this was a perfect time to watch it.  It's helpful to distract her while she recovers from a low.  I figured the low was just because she'd eaten too slowly.
Playing in the creek last week in her
friend Keira's neighborhood.

But here's the weird thing.  She kept recovering and crashing again.  You can see how her sugar bobbed up and down like a boat in the water in my post below.  I couldn't figure out what was going on.  Michael and I discussed it, and the only direction we found, to point the blame, was a freshly opened vial of insulin.  I learned in the hospital, that a vial of insulin slowly loses it's potency over the month that you have it in use.  So, when you open a new vial, the insulin in it is stronger than the last dose you got from the old vial. Michael and I pondered that.


We also discussed that she'd had a big 'ole dose of it, to cover the wad'o-carbs in all that tortellini (strawberries have a few, but they're actually pretty low, as fruit goes)

So we sat on the couch watching The Sound of Music, and watched her blood glucose rolller coaster, see-saw and do The Hokey-Pokey up and down all evening.  When we got the the end of "So Long Farewell," it was 9:30
she'd had a *well balanced bedtime snack,
and she had just registered a BG of 166.
We gave her her usual bedtime Lantus.
No problem.
Let's put her to bed.

So, we brushed the teeth, filled up the water bottles, Reid put on his head gear, Kenneth got his retainer, everyone found a book to take to bed, I apologized to her again for leaving her iPad at The Campus Theater (oops!)  I think I finally turned the boys' lights out at 10:20, but I took a stack of books off their shelves to offer to her, because it wasn't only her iPad I left behind at the Campus Theater, I left her new book from the Easter Bunny there too.  (oops! again. <sigh>)

So…I climbed up her loft ladder to give her these four books: The Sarah Plain and Tall Collection, Charlotte's Web, Half Magic & Because of Winn Dixie.  When I got there, she said, "I don't feel good."

"Low?" I asked.
"No, just 'not good'" she sighed.

So, down the ladder we went, back to the couch.  I was sitting there trying to get her food and BG log caught up from the show opening weekend before I went to bed. It's incredibly challenging to write down everything she eats, and how many grams of carbs are in each item when you are frantically dodging around back stage with juice box trying to stay out of the way, and out of sight - and sewing elastic on 25 hats for the other kids in the cast too.  Talk about doing the Hokey Pokey! (remind me to get an app for that!)  Finally, after a few minutes, at nearly 11:00 pm, she asked me to check her again.  58!! What the devil? 58? Why!?

So I threw up my hands, and called the clinic the answering service, who paged and awakened The Good Dr. Smith, and he said it was probably her Honeymoon kicking in. Oh boy! Where do I sign up for THIS kind of Honeymoon? Who the heck though up that name?  The only thing I can see that it has in common with a honeymoon, is perhaps the wild sleepless nights. I can hardly wait to pack my bags! Be sure to pack the Glucagon!  Wheeeeee!

Dr. Smith sleepily told us to give her a substantial *well balanced snack and check her every hour all night.  We did, but by 3:50, I checked and her BG was 493.  Freak out time!  I called good ole Dr. Smith a second time.  The first thing he suggested was to check it again, to see if it was really that high.  (note to self: do a second check next time before calling.) On the second check it was only 328, but we hadn't been given any instructions for what to do if she is high at a time other than a meal. They had  only taught us that if it's over 250, to check ketones, and push fluids.  He mumbled to himself, did some math and told us to give her 1 unit of Humalog.  We hung up and got the insulin ready.  It was all kind of horrible with her crying and not fully awake.  I'm so grateful Michael was here, because I  don't know if I could have done it by myself.  I hugged her tight to keep her still while he did the injection.  She's very cooperative about injections unless she's very tired.

Afterwards, I tucked her back in between us and held her in my arms singing "Hush Little Baby" until she finally stopped crying and fell asleep.  The last couple of checks, in the wee hours and this morning have been in her target range.  If it had to happen, at least it wasn't during a performance.  If it had done this on Friday or Saturday night, we would have been faced with a girl made of jello in the middle of a show.  It's always good to find the upside, but that sure don't make it no Honeymoon!

*Well Balanced means a good mixture of fat and protein, along with 15 grams of carbohydrates, it's supposed to help carry her through the night without going too low. Eleanor likes peanut butter trail mix balls, they make a good bedtime snack.

Monday, April 8, 2013

This is Not My Idea of a Honeymoon!

We seem to have boarded a roller coaster earlier this evening, although the pedi-endo on call called it her "Honeymoon."  This is not my idea of a honeymoon. 
6:23 pm, BG 126 (dinner/dose)
7:31 pm BG 56 15 g CHO
7:54 pm BG 110
8:33 pm BG 87 (15 g CHO snack)
8:53 pm BG 70 15 g CHO
9:29 pm BG 166 
10:55 pm BG 58 (called the clinic, 45 g CHO, uncovered)
11:49 pm BG 210
12:40 am BG 290

It's going to be a long night.

Thursday, April 4, 2013

My Six Year Old Has A New Baby Monitor

My youngest child, my daughter, Eleanor, is 6.5 years old, but the UPS truck just dropped an Amazon.com box on my porch containing a new baby monitor for her.

Eleanor shows off the donut earrings
 she got from the Easter Bunny

23 days ago, she was diagnosed with Type 1 Diabetes, and in 23 short days reality has been stained,  turned inside out, shrunk in the wash, hung out to dry, faded in color, torn and mended, and here we are, with a very different reality.

I thought she had leukemia.  I knew something was gravely wrong.  Leukemia jumped into my head because she has three blood relatives who've had it, and I've spilled much hearts blood fund raising for that worthy cause.  Before I took her to urgent care, I googled, "leukemia," "anemia," and "mono," but I didn't google diabetes.

Symptoms of Type 1 Diabetes

• Increased thirst and frequent urination
• Extreme hunger
• Weight Loss
• Fatigue
• Blurred vision

I took her to Acute Care For Kids on Sunday March 10.  It was the day we changed the clocks, and she'd slept until 1:00 pm. 1:00 pm!! At 1:00 pm, she woke up, ate an enormous lunch and 20 minutes afterwards promptly curled up on a bean bag chair and went right back to sleep.  That's when I started scanning my memories of the last week.  That's when I really worried.

I remembered the virus she'd had the weekend before.  She'd caught it from her brother, but she hadn't been as sick as he was.  He ran fever for 6 days.  She only had fever for 3.  She didn't have fever on Tuesday, but I kept her home from her science class because her energy was so low, and they take hikes there.  I figured she was still getting over the virus.

On Wednesday on her way up to her bedroom loft, she said to me, "For the last 4 days it's hurt my legs to climb the ladder." Again, I blamed the virus.

On Thursday, her friend Lily, stopped me in the hallway outside of dance class and said, "Eleanor didn't feel well, she had to sit down and rest during class today."  That was beginning to be a little weird.

On Friday, I had a migraine and Michael took her to rehearsal instead of me.  He texted me a picture of her in her costume, with a little smile on her face.  That picture makes me sad now.   She must have felt absolutely awful.

On Saturday, we went to Gifted Kids Games day, and her friend Mabel joined us.  Eleanor played the games, but was listless, and quiet.  She went to the bathroom a couple of times, but it didn't feel excessive.  She also asked for a drink, and I got her a Sprite.  Scary to think now what that did to her BG.

Then we had a family birthday party to go to, but we ate out first.  Just before we left the restaurant she said, "I think I'll go to the bathroom before we get in the car."  So she scampered over there and went on her own.  No problem.  However, I do recall, and this was the first time I noticed the frequent bathroom trips, she asked for the restroom again not long after we arrived at the party.  I went with her.  She was very quiet and clingy at the party, she sat beside me with a long face.  I was actually kind of annoyed with her, because a woman was being very friendly and trying to chat with her about the theater, and she wouldn't really make conversation.  This is very out of character.  I couldn't figure out what was wrong with her.  I left the party early to take my older son to a teen dance.  We had two cars, so Michael took her home.  I came home late and didn't see her again until morning… when the very late sleeping happened.

So, now, here we are 23 days later and I'm still adjusting.  This is my first blog post, and I have much more to say, but I'll take it a bit at a time.

I'm so sad.  My heart is broken.  I'm glad we can help her. 100 years ago, she'd just be dead.  If we lived in parts of the world where insulin is not available or too expensive, she'd just be dead.  If she has a low during the night…she could…just…be…dead.

Other things I'm sad about.  Assuming we keep her alive, and she lives a reasonably healthy full life, which is actually quite likely.  I'm sad anyway.

Here's what I'm sad about, and frankly, any one of these could be the topic of a future blog post:
• She was born at home, but it's unlikely she'll be able to have her babies there.
• Every time I look at the digital slide show over our fireplace and see her smiling face, I think, "That was before."
• Her brothers are worried about her.  (They are at my dad's right now, but he told me Kenneth was up at 4:00 am worrying.)
• I was on the brink of some flexibility and freedom.  Kenneth took his Red Cross baby sitting training during a Spring Break workshop while Eleanor was in the hospital.  It's a cruel irony.
• A teenager said something to her about her diabetes during rehearsal, but she wouldn't tell me what they said.  I have nowhere to go with that one.  I didn't press.  She's entitled to her privacy, but why didn't she want to tell me?  She told me that it happened, so she wanted comfort on some level.
• No matter what everyone says, birthday parties are going to be a PITA.
• She really wanted a chocolate rabbit for Easter, and she didn't get it.
• Her teeth are at great risk of decay now.
• It will never ever ever go away.
• I'm at the mercy of doctors to use their power to grant me or deny me the things I want to care for her.  I can't just choose.  They hold the cards.

and finally, it makes me really sad, that…

• My six year old has a new baby monitor.