Wednesday, April 23, 2014

A Fabulously Long Day Book (and Some Answers for Curious Kendra!)

Outside my window...
It's gray and cold.  It's that time of year here when is 70 degrees one day and 35 the next.  Today's a 35 day.  Oh wait - it took me so long to write this it's now sunny and 43.  

I'm hearing...
Mostly blessed silence.  It's my peaceful afternoon time.  The three youngest are sleeping and the boys have their quiet time in the basement.  All I can hear, apart from the tapping of these keys, are strains of Jim Weiss' voice regaling the boys with his version of Kipling's Just So Stories.  We're big Jim Weiss fans around here :)  We have several of his recordings already, but I've started plotting which new ones I'll buy for our summer road trip to Cape Cod...  I'm thinking "Good Luck Duck," "Twenty Thousand Leagues Under the Sea," "Treasure Island," and the "Adventures of Tom Sawyer."  

From the kitchen...
We certainly feasted on Easter!  We had a big brunch after Mass (which included my favorite homemade baked good of all time - orange kisses.  If only I didn't have kids... I could eat the whole batch myself!) and a delicious grilled salmon dinner.

For the rest of this week, not a whole lot.  I've been struggling lately to keep the grocery bill within the grocery budget.  It seems like by the time I buy all the fresh fruit and vegetables that we eat for breakfast, lunch, and snack, I have just enough left for everyone to have a grain of rice and a black bean for dinner.  I know plenty of "larger" families eat well on a budget, but I haven't yet mastered the art of thrifty grocery-getting.

Anyway...  I just got a loaf of bread started in the bread machine for tonight. Soup is what's for dinner.  It's cool enough for a soup night :)

Around the house...
Things are in a bit of a state around here as I transition the clothes and gear from winter to spring.  In addition to the messy confusion that inevitably accompanies the wardrobe switch, things are also a bit crazy as I experiment with a new laundry system.  We've always kept everyone's dirty laundry separate and washed each  load once a week.  It's not working so well anymore because (1) the kids get really dirty outside but I won't let them be around the house with dirty clothes, so sometimes they change two or three times a day and they run out of clothes before their designated laundry day and (2) I want to stop buying as many clothes for the kids as I have in the past.  So, we're testing out the old everyone-throws-their-clothes-down-the-chute-in-the-evening-and-it-all-gets-washed-together-overnight system of doing laundry.  I still have to figure out when we'll work in towels, linens, and adult whites...  It's a work in progress.  

I'm watching...
Woah.  There's a lot on my list.  Having given up Internet movie and tv show watching for Lent, there's much to catch up on :)  - a few episodes of "Elementary" on, and waiting for me at Netflix are "Foyle's War,"  "Endeavor," "The Paradise," and "Upstairs, Downstairs."  Oh, British television, how I love you!  

Books I'm reading...
I just finished Dumbing Us Down, by John Taylor Gatto and The Hurried Child, by David Elkind.  Lots of thought-provoking stuff to mull over on parenting, childhood, and educational choices.

I have a gigantic stack of books out of the library right now.  I think next I'll be cracking open  Evangelical Catholicism, by George Weigel and a few John Holt classics - Teach Your Own and How Children Learn.

Books I'm reading with the kids...
The Horse and His Boy, by good old Clive Staples
The Story of Money, by Betsy Maestro (we all really enjoyed this one as a social studies / history supplement)
and I just bought a long-time library loan favorite, The Library Lion, by Michelle Knudsen.  (For this and other kids books that we love, check out this post here!)

From the Interwebs...
Another thought-provoking read: Newsflash: Motherhood is not the World's Hardest Job.  (If you're a mom and think that it's the hardest job in the world, you're doing it wrong.  And you're probably also doing your children a disservice.)  Read it.  It's good.

I'm pondering...
Oh so many things. 

Kids and money.  We're on the cusp of giving the boys (and maybe Ruth) more responsibility over their own piggy bank money.  I know how we are going to organize it; just have to do it.  But also, the boys in particular, are interested in earning some money to save up for Lego sets they have their eyes on.  I'm still unsure what type of work around the house would merit payment.  We certainly won't be paying them for their daily chores, but I'm having a hard time dreaming up other tasks they could do that I'd be willing to pay them for.  Any ideas?  Russ and I were thinking of 50 cents per extra "chore" (they're still young!)  

Our home and yard.  They are feel considerably smaller than when we moved in here five years ago with just two children!  What accommodations can we make so that our house continues to serve us well?  What can I do for my kiddos so that they can have more outdoor space to explore and create and learn?  

Planning for the summer months...
Stuff to do in Cape Cod.  Really, the only things on my "must do" list are the Woods Hole Oceanographic Institution and taking the kids to do some really good tide-pooling.  We don't travel a lot, but when we do, we're going to do some awesome location-specific educational things, goshdarnit.  You can't explore tide pools in Western New York, so that's what we're going to do.  How one goes about finding a really good place to go tide-pooling, I do not know.  Maybe ask at Woods Hole, I guess...

I'm also committed to finding another hot air balloon launch we can go to.  Maybe we'll see you at one!  (Here's a schedule for you!)

I'm looking forward to...
My sister, brother-in-law and nephew are moving here this weekend!  Yipee!!!!  And I'm praying for their safe travels and a smooth transition!

I'm creating...
Two crochet blankets, simultaneously.  The boys asked for them, so I jumped right on it!  I chose the pattern and colors according to what I thought would suit each boy.  Here's a sneak preview.  I'll post more when they're done.

I am so very happy that I rediscovered crocheting last fall!  I've enjoyed it so much and I really need "creative time" to re-energize me.  It's much easier to pick up a crochet project around the house whenever I get a spare moment than it is to find time to get up to my attic sewing space.  

What's up with the kids...
One day a couple weeks ago Ruth asked Russ to take the training wheels off her bike.  Two minutes later she was flying down the street!  What a girl!

Dominic has been begging me to do a sewing project, so I just got him started with something simple.  (Ruth joins in doing lacing.)

Aaron's progressing with reading.  He read an entire "Billy and Blaze" book yesterday, and enjoyed it!  Yay!

Clare is a cute handful.  She learned to climb out of her crib.  'Nuf said.

James is so smiley and talkative!  I think he's ridiculously adorable, but I'm his mother, so what do you expect!  

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And Curious Kendra asks... (via "Answer Me This" at Catholic All Year

What did we wear for Mass on Easter Sunday?   
It's actually a wonder we were even all wearing clothes at Mass on Easter Sunday.   Getting out the door for 8 o'clock Mass is cuh-razy with kids who don't know how to button and buckle and zip and tuck in on their own.  But we made it.  Barely.  I was getting dressed as Russ was buckling the kids in van.  I had wet, unstyled hair and I slopped some makeup on during the 3-minute drive.  As for what we wore, we went for thrifty over nifty this year.  Here it is...

I wore the green dress that I wore when I was the Matron of Honor at aforementioned sister's wedding two and a half years ago... when I was pregnant with Clare.  In fact, that was the last time I wore a dress at all (if you don't count a hospital gown...)  (If you know me at all, you know I'd be perfectly happy to wear sweats all day every day, even Easter if I thought I could get away with it...  Oh  wait, I did change into sweats after Mass when I remembered one of the reasons I don't wear dresses is because they make it very difficult to nurse a baby...)

Russ wore the suit and shirt he wore for our wedding. The boys wore the same shirts and ties they wore last Easter.  Ruth and Clare wore dresses that were lingering in the attic.  I had to buy them new shoes :)  And James, well, he's baby no. 5.  He wore hand-me-downs.  

Easter Bunny - thumbs up or thumbs down?
Thumbs way down.   We just don't do stuff like that around here.  
The "significant" reason (insofar as it applies to me and my family and I don't apply it to anyone else's personal or familial practices...) is that we try to avoid a thing that might minimize or distract  from the Truth of the celebration.   I have a hard enough time with the monumental task of dispensing the truths of the Faith to my children, I hardly need to juggle the confusion that holiday "characters" breed.  (Easter Bunny!!  Breed!!  Get it?!?) There are other serious reasons, but perhaps another time...
The casual, flippant reason, is I just don't get it.  And I don't want to spend my time cultivating... whatever it is.  And if the Mom doesn't want to do it, we don't do it.  (I didn't even manage to pull together an Easter basket this year.  The kids got bubbles, sidewalk chalk, and a chocolate bunny in a plastic shopping bag.  I don't think they're scarred for life...)

Do you prefer to celebrate holidays at our place or elsewhere?  
HERE!!  Absolutely, here!  I am a homebody through and through.  Then there's the convenience of being where all our "stuff" is - the diapers and wipes, clean clothes, cribs and favorite blankets.  And there's also the breath-easy aspect of being at home - if something gets dirty or broken, it's ours, not someone else's thing that we dirtied or broke :)  

Favorite kind of candy?
This question is killing me, as I'm trying to avoid candy right now...  what a dumb idea.  (Have to avoid it because I love it too much!)  I love Sour Patch Kids and Take 5 candy bars.  

Do I like video games?
I don't know.  Does computer Tetris of the 1990's count?  I've never played a real video game.  Sometimes I wonder if my kids wouldn't benefit from something like a Wii Fit, but when I start talking about it I realize I have no idea what I'm talking about.  Russ says maybe they'd like an Atari.  But I don't know what that is either.  It must be really cutting edge if I haven't heard of it yet...

Do I speak another language?
Huh.  I have a degree in French.  Do I speak it?  I used to be decent, but now?  Non.   I can say my prayers in French, so I do that occasionally to keep up the accent.  Once in a while, I bust out with a mean and melodious rendition of Frere Jacques.  But these days, with the boys doing Song School Latin, you're much more likely to hear me going around the house singing (to the tune of the Battle Hymn of the Republic), "I am a mighty miles, I can swing a sword.  My gladius is my best friend when I go off to war... A bellum is a tragedy, but a miles still must go.  Pugno in rain or snow!"  So, yeah.  I speak Latin.  Er, I mean, Dico Latin.  

And if you're still reading all this... wow.  You must really be a fan!  Thanks!  

Happy Wednesday!  

Thursday, April 17, 2014

1 Year of Type 1 Diabetes :: Part 5 :: Day to Day

*Thank you for all the feedback for Aaron on his last video.  I was so happy to pass your kind comments on to him!*

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Need to get caught up?  Read here:

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Thanks so much for sticking with us through this mini series on Aaron's diagnosis of type 1 Diabetes.  We're wrapping things up with a look at what it's like having type 1 day to day - for a child and for his parents.  

When you leave the hospital with your newly-diagnosed-with-type 1 diabetes child your new task is to keep his blood glucose levels as even as possible.  This is the most insane and ridiculous and crazy task in the world.  A diabetic's levels will never actually be  "even" because there is no way for manufactured, injected insulin to work with the same delicate precision as a functioning pancreas and a body's natural insulin.  Maintaining decent levels can be stressful, frustrating, confusing, and overwhelming, especially in the beginning.   There's a steep learning curve that first year.  There are some major life adjustments that, once they become routine, don't seem so daunting.  But those first few months?  Daunting.  

Most of the "daily routine" of diabetes actually is routine now, both for Aaron and for Russ and I.  Aaron checks his blood glucose levels 4-6 times a day - before meals, before bed, before/during physical activity,  and if he's feeling "low." (Low blood sugar is dangerous in the short term - a diabetic can become unconscious and suffer brain damage in extreme cases.  Uncontrolled high blood sugars cause more problems in the long term.)  Some nights Russ or I (usually Russ, because he's awesome like that) check Aaron's blood 1-2 times (especially when we're testing out a new dose of Lantus insulin.)  Aaron receives an injection (more like an epi-pen than a huge syringe) of Humalog insulin during or after every meal (and some snacks) and one of Lantus at dinner.  Humalog is the insulin that covers the carbohydrates he consumes at meals and snacks, Lantus provides a slow-release/long lasting dose of insulin over a 24 hour period.   

When we leave the house, all the stuff comes with us.  So do glucose tabs, a juice box, and Smarties to treat lows.   And we always have our Calorie, Fat, and Carbohydrate Counter Book on hand.  

That's just the normal day-to-day stuff.  There's much more that goes into caring for Aaron.  "Special circumstances" that demand extra attention include physical activity,  illness, dental work (happening this weekend...), stressful situations (like test-taking),  cuts and infections, dry skin, and so on...

A year later... it's mostly routine.  But that doesn't mean it's easy.  

Even now,  Aaron still gets blood glucose readings that completely baffle us.  What???  We TOTALLY counted that bowl of oatmeal and fruit right!!!  What do you mean he's at 387 before lunch???  (Optimal blood glucose levels are around 100.)  

There are days we completely forget all about diabetes and we plan a super fun outing and we leave for the day without a stitch of testing equipment or a drop of insulin.  Wake up, people!  It's been a year!  It's a situation that makes for a lot of parental guilt, stress, and ridiculous numbers later in the day...

hehe... remember this guy!!
Aaron visits a pediatric diabetes clinic every three months to meet with his endocrinologist, a fellow or a resident, a certified diabetes educator, and a nutritionist.  And even though we've been trying really hard to get carb counting right and insulin dosing accurate, he still gets high results on his A1C readings.   Ahhhhh!!  We're really trying hard, I swear!  (The A1C test gives a broader picture/average of what blood glucose levels have been like over the past 2-3 months.)   I just try to be prepared for the fact that the endo will probably never use the adjective "level" to describe his actual "levels."  

It really can be crazy trying to juggle it all - at home, on the road, with other kids under foot, and on top of all the regular old craziness of everyday life.  But the feelings of stress, anxiety, and frustration of which I speak are mostly just in reference to myself and Russ.  Aaron has been the least phased of all by all his diagnosis and treatment.  What a blessing to have a child that isn't resistant to all that goes into caring for him.  I can't imagine the additional difficulties faced by a family in which the newly diagnosed child is resistant to the needles and the extra time and "stuff" that surround meal times.  They have my prayers and sympathy.  Aaron occasionally has a mini-complaint about caring for his illness, but for the most part, he's fabulous.  Here he is to conclude this mini series.  He will show you what it's like to check his blood and receive insulin at snack time.  It's real life - totally unedited, including the part where he wipes his bloody finger on his shirt.  (I'm so embarrassed!)  


Monday, April 14, 2014

1 Year of Type 1 Diabetes :: Part 4 :: What is Type 1 Diabetes? and Other Things You Can Learn From Highly Scientific Internet Memes

Our son, Aaron, was diagnosed with Type 1 Diabetes a year ago.   He and I have been working together on a few posts to share his story with you.  

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(Read Part 1Part 2, and Part 3 here)

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Part 4
What is Type 1 Diabetes?  And Other Things You Can Learn From Highly Scientific Internet Memes

What is type 1 diabetes?  I didn't know before Aaron was diagnosed.  If anything, I shared the most widely-held misconception that diabetes was something that was obviously caused by poor diet and lack of exercise and was controlled by healthy diet and increased activity.   Even though that's what I thought, it didn't entirely make sense since I knew that Aaron was active and that he had a balanced diet - mostly healthy food with occasional, portion-controlled treats and desserts.  When our pediatrician first indicated that Aaron's symptoms were pointing toward diabetes, I thought our son would never have another cupcake again and that our whole family would be starting up a new nutrition and exercise plan.  Wrong-o.  We quickly learned what it isn't and all that we would have to do to treat what it is.  

You can enter "what is type 1 diabetes" into any internet search engine and get all the information you're looking for.   But I'm going to give it to you in my own words based on our experience and information from the book The Everything Parent's Guide to Children With Juvenile Diabetes** (M. McCarthy) and it will obviously highlight the things that stand out to me, a parent caring for a young diabetic.  And maybe we can have a laugh along the way! 

**This is great resource book, but I've never understood why they reference "Juvenile" diabetes in the title, since that misnomer has been replaced with "Type 1" and they say as much in the book.  So????

hint: if it's lifelong and you won't grow out of it...
What is type 1 diabetes?
Type 1 diabetes is an autoimmune disease in which the body's immune system mistakenly attacks a healthy pancreas and destroys the beta cells which produce insulin.  

Our bodies break down the food we eat into its various components, one of which is carbohydrates.  The carbohydrates we eat are converted into glucose, a form of sugar that is consumed by our cells for energy.  Glucose, delivered by the blood stream,  is food for our cells.  Insulin is the "link" that facilitates the absorption of glucose into the cells.  Without insulin, glucose is not able to enter the cells and instead remains in the blood stream, causing high blood glucose levels, or hyperglycemia.  The cells will not be "fed" and the body goes into "starvation mode."  

***  yay!  we made a movie ***
"What Is Type 1 Diabetes"
by Aaron

(Aaron is so serious in the movie!  I kept encouraging him to smile and act friendly, but he kept telling me that he wanted everyone to understand how serious this is...  We're going to work on his presentation skills!  At least he didn't repeatedly yawn in this one like in an earlier one we tried!)

Type 1 and Type 2 Diabetes are different illnesses.
Only about 5 percent of Americans with diabetes have type 1.   It  stands to reason that type 2 is more widely understood, and this can cause confusion and misunderstanding since the two types have some significant differences. 

A person with type 1 has an autoimmune disease and his body will never produce insulin again.  

this message brought to you by your formerly functioning pancreas
Type 2 diabetes is a metabolic disease in which a person's body still produces insulin but has a difficult time using it properly, or it doesn't produce enough insulin.  A person with type 2 can potentially improve their health and/or blood glucose levels with diet and exercise.  A person with type 1 should obviously eat properly and exercise, but these will not change the "status" of his diabetes.

What causes type 1 diabetes?
Scientists (how's that for generic) believe that it is a combination of a genetic predisposition and an environmental trigger (often a virus) that "sets off" the autoimmune response.  Type 1 diabetes is not caused by what a person eats or doesn't eat (sugar or anything else)  or by exercise levels.   It is not caused by drinking full-sugar pop (some of you may call it soda), and it is not a result of being born via c-section or not having been breastfed as an infant, or any other of the wacky things you may hear.  There is nothing a diabetic (or his parents) could have done differently to avoid the onset of type 1 diabetes.  

Is there a cure for type 1 diabetes?
Unequivocally, no.  There may be in the future, but now - no.  

The insulin-producing cells in the pancreas of a person with type 1 diabetes have been attacked and damaged beyond repair.  They will not "heal" or "regenerate" or "recover"  or mysteriously start producing insulin again.  (Except in the case of a miracle!!)  

Type 1  cannot be cured with an extreme diet - including whole foods, vegan foods, or carbohydrate free foods.  It cannot be cured with cinnamon.  

Those generic scientists I mentioned earlier... they are working on the development of an artificial pancreas which may some day make the lives of type 1 diabetics easier.  But there will be no cure until there is a way to induce the body to make its own insulin again.

But doesn't insulin cure the diabetes?
Insulin is not a cure.  It is a treatment.  However, it is not a medication.  In fact, it is a hormone that everyone needs for their body to function properly; people with type 1 get it by injection.  

Can a person with type 1 diabetes eat whatever they want?

And yes.

So, no, they can't eat whatever they want and expect to stay healthy any more than you or I.  Just as I can't eat anything I like whenever I want and hope to stay healthy, neither can a diabetic.

But also, yes.  They can eat whatever they want.  Unless there are other dietary factors in play, (for instance, some diabetics also develop celiac disease, another autoimmune disorder) a person with type 1 diabetes will generally not have any food restrictions.  

This is perhaps the most difficult concept to come to terms with or to convey to others.  It is not wrong or bad for my son, Aaron, to have a cupcake.  He may have a cupcake at a party without "breaking the rules" and without guilt just as I may have a cupcake at a party without worry or guilt.   His diabetes will not be better or worse for the cupcake.  After we both eat our cupcakes, I  won't even be thinking about the insulin my body is pumping out to usher glucose into my cells.  What I will be thinking about is how much insulin Aaron will need by injection to "cover" the tasty (guilt-free) cupcake he just ate.  

So do people with diabetes really use needles all day long?
Yes.  More on that next time!  

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Check back later this week for Part 5!

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St. Josemaria Escriva, pray for us!

Saturday, April 12, 2014

Seven Things I Can Safely Promise I Will Never Crochet

Taking a weekend break from all the diabetes chit chat to hit you with an installment of Seven Quick Takes:
Stuff I Can Safely Promise I Will Never Crochet
(and if I try to, please stop me.)

Because it's just wrong to do this to an otherwise cute kiddo...

Because... chafing, obviously...
(and sweating, if you made 'em using acrylics...)

Because boys often miss and might spray the crochet...

Because, uh, really.  They went with Hamburglar instead of Hamburger Hooker for a reason...

Because the song is "He sees you when you're sleeping," not other things...
and it's just creepy.

Because it's actually a little scary looking...

Because I already bought Russ his new shorts for summer.  Darn...

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Head over to Jen's for more Quick Takes.

And see you back here on Monday for Part 4 of 
1 Year of Type 1 Diabetes

Friday, April 11, 2014

1 Year of Type 1 Diabetes :: Part 3 :: Looking Back on Aaron's Diagnosis

Our son, Aaron, was diagnosed with Type 1 Diabetes a year ago.  It was Monday, April 8, 2013.  

Aaron and I have been working together on a few posts to share his story with you.  We had recorded a little video of Aaron to share with you today, but it's harder to record a decent little video of a 7 year-old in a busy household than you may think.  Needless to say, it didn't come out as I had hoped and it's not here yet.  I'll alert the waiting world if we ended up getting something worth including here!   

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(Read Part 1 and Part 2 here)

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Part 3
Aaron's Diagnosis

(the photos in the post are from my phone, taken the day Aaron was admitted to the hospital)

It was a Sunday morning when I finally said, "No more.  We're going to the doctor."  The next morning Aaron got dressed for tutoring and I emailed his tutors saying that he had a doctor's appointment, he would be a little late.  Russ took the morning off from work and I called the pediatrician.  He drinks a lot of water.  I want to bring him in right away.  I imagined the receptionist rolling her eyes at my concerns of a well-hydrated child as she   penciled us into the schedule.  "It's one of those moms," she'd say as she hung up the phone.  (I hope you realize this was all in my ridiculous head, and that our doctors and all their staff have never been anything but awesome.)

At the pediatrician's office I continued to worry that I was being  a paranoid hypochondriac on behalf of my child.  Have you ever brought your child in and they say, "Yep.  He has what we professionals call the Common Cold.  Go home, please.  And only come back if this turns into something really serious."  That's what I was afraid of.  But I was even more afraid that Aaron's symptoms would actually turn out to be something.  

They took a urine sample and asked their questions.  Increased thirst and urination?  Yes.  Increased appetite?  Yes.  Weight loss?  Yes.   Altered activity levels?  Yes.  The doctor said, "So, do you think you have an idea of what we're probably looking at here?"  I was in a fog, but I had done my Google-ing and WebMD-ing and said "yes."  I knew he meant diabetes, but I still didn't have a clue what diabetes meant.  My first thought reflected the most common misconception of type 1 diabetes - I guess our whole family will have to change our diet and lifestyle to accommodate this.  

The doctor said, "We're going to make arrangements for him to go Children's Hospital."

I thought, Ok.  We'll work that in this week.

The doctor said, "I'll call the ER and they'll be expecting you within the half hour."

What?   The ER??  I was going to drop Aaron off at tutoring after this...

"Aaron is dehydrated.  They'll address that first, then start blood work and testing to officially diagnose diabetes."

I called Russ and said he'd better take the whole day off.  I was on my way to the ER with Aaron.  

At the ER we bypassed the crowded waiting room (bonus!) and were seen right away.  I'm sure you can imagine what Aaron went through next - IV's and blood tests, urine tests, and more questions.  I was in shock and was operating on something like autopilot.  But Aaron was amazing.  He did not resist any of the tests or needles, and asked questions about it all along the way.  He was friendly, cheerful, and inquisitive.  

Aaron was, thankfully, not in a state of diabetic ketoacidosis (yeah, I didn't know what the heck they were talking about then either...) but he had trace ketones in his urine.  His blood glucose levels were over 700 when first tested in the ER.  His A1C was over 12%.   It all meant nothing to me because I still didn't even know what the normal ranges were.  We were in the ER for several hours.  Aaron received his first insulin injections and as much food as he wanted.  It was when they started feeding him that I started to realize I probably didn't really know much about type 1 diabetes because why were the nurses pushing so much food on him??  Like hot dogs and juice and cookies and stuff??  

The doctor said, "He will need to be admitted so that we can get his glucose levels under control and teach you about managing type 1 diabetes."

I thought, Ok.  We'll work that in this week.

"We're making arrangements for his room right now.  You'll brought up there soon."

I was reeling.  Even though I had had an inclination that the diagnosis would be diabetes, I still didn't know what it was, or why it was so serious.  How had we gone from a somewhat casual visit to the pediatrician to hospitalization in one morning???

I called Russ to say that this was a bigger deal than we thought.  Take the next couple days off of work.   (note: "bigger deal" is not an actual medical term ;) )  

We were so blessed to have my parents help out watching the other kids while Russ and I took turns being at the hospital with Aaron.  One or both of us was always with him.  But it was I who spent the night on the infamous hospital plastic chair-bed.  However, the night was made somewhat more bearable when my mom suggested a laptop and a soothing Pandora station.  Aaron managed to sleep that night.  I managed to listen to a lot of a soothing Pandora station.

The care we received at the children's hospital was wonderful.  Aaron actually enjoyed his time there and was disappointed to be discharged after only one night.  He rolled with the punches, offering his fingers for blood tests and his arms for injections like he'd been doing it forever.  He enjoyed charming the nurses and doctors that were in and out of his room caring for him and educating Russ and me.  He was especially excited about the extensive food menu that was available to him 24 hours a day.  

(For the longest time I was so embarrassed about how much he ate at the hospital - he literally could order whatever he wanted any time of day - and he did.  It wasn't until months later that I learned that kids are often ravenous after their first insulin treatments because their bodies haven't been metabolizing food properly for so long that they truly do need to feed their now properly-working bodies tons and tons of food!  Whew!  Embarrassment gone.)  

The staff were good to us.  They were very attentive to Russ and me and were sensitive to the stress of our new situation.  We were overwhelmed, to say the least.  We were given so much new and unfamiliar information in such a short time.  The staff kept reporting numbers - glucose levels, ketone levels, A1C levels - and we still weren't quite sure what they had to do with anything.  

And then we went to the "learning" sessions.  My parents were still at home with the rest of our crew;  I can't even imagine managing to concentrate on anything if anyone other than the best grandparents in the world were home with the others for so long!  Russ, Aaron, and I spent an entire morning learning how to use a blood glucose meter, pen needles, blood and urine testing strips, and emergency syringes.  We were given insulin dosing instructions and mathematical formulas to figure doses for every meal and snack.  I recall feeling like a deer in headlights.  I was listening and taking notes and nodding my head in agreement with things, but the reality of this new life for Aaron and us wasn't sinking in.  It was like I had to block out the overwhelming-ness of it all so that I could focus on the information. There was so much to know.  W
e were told to prick our own fingers so that we would know what it would be like for our child who would check his blood five or more times a day.  And then we had to give a practice insulin injection to a sponge.  That was when my heart sank - I slowly realized that this was really happening and that Aaron would be living with finger sticks and needles for the rest of his life.  He could never just "grab a snack" and go.  He would always be dependent on manufactured insulin to remain healthy.  He would always be sorting through numbers in his head - carbs, dosings, readings, and target levels - just to do what almost everyone else does without thinking: eat.   

Then we were given a crash course in carbohydrate counting.  And I started to cry.  The instructor made it sound as simple as "look on the package of granola bars or can of soup and it will tell you how many carbohydrates there are per serving."  But what if you don't eat store bought granola bars or soup?  How do you even begin to count homemade food with multiple ingredients??  Or what about peanut butter and jelly sandwiches or fruit or casseroles or yogurt or EVERYTHING ELSE??  It was the most overwhelming information to take in of all - Aaron's care would depend on adding up every little carbohydrate, every meal, every day.  It would be time consuming and tedious.  And we would have to start doing it right away.  Because that afternoon they were sending us home with our son who now had a lifelong, incurable illness that required continuous monitoring and treatment. The burden of the work would fall on us, his parents.  But the reality of the inconvenience and pain would always be with Aaron.

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Ok, hopefully that's enough of the "Looking Back" melodrama.  Check back here on Monday where I'll lighten things up with some highly scientific Internet memes that will singlehandedly (and scientifically!) debunk the common misunderstandings and myths about type 1 diabetes!!  

Wednesday, April 9, 2014

1 Year of Type 1 Diabetes :: Part 2 :: Looking Back at the Weeks Before the Diagnosis

Aaron is our oldest child.  He is independent, inquisitive, creative in a blocks and Lego engineering sort of way, and helpful around the house - he can wield a vacuum like nobody's business.  He likes big work machines, yard work, big pancake breakfasts, football, Legos, and math lessons.  Aaron was diagnosed with Type 1 Diabetes a year ago.  It was Monday, April 8, 2013.  

Aaron and I have been working together on a few posts to share his story with you.  

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(read Part 1 here)

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Part 2
The Month Before the Diagnosis
(Realizing "Something Is Wrong")

Last winter/spring, Aaron was 6.  It's hard to remember exactly, but it was probably some time in early March when we started to identify "strange" habits in Aaron.  But whatever the "strange" things were, they never seemed very serious and we kept saying we would just keep an eye on him.  Well, you know what they say about hindsight...  It's easy to look back now and clearly "see" the diabetes diagnosis a mile away, but last winter we didn't even know what the signs and symptoms of diabetes were.  By the time Aaron received his diagnosis, he was in the thick of the signs and symptoms, and all those "strange" things that we had been "keeping an eye on" fell into place and made some sense. 

The first eyebrow raiser I can remember was Aaron's extreme thirst.  He was thirsty all the time.  He was constantly jumping up to "get a drink," which was really an extended draft at the sink - no cup, just gulping water from the faucet.  And then he'd be back there within the half hour.  That was at home.  Aaron also told me that he would ask to refill his water bottle three or four times each morning at the study center he attends (which is two mornings a week).  After a couple weeks of this I wasn't starting to get worried, I was starting to get angry.  I was upset that he was disrupting class at the study center for water and I was irritated when he would interrupt whatever was going on in our household, especially school lessons, for the same.  I started to feel like this might be a discipline issue and I know that a couple times I forbade him from going to get a drink because I thought he was just getting a little too annoying with this whole water thing.  Aaron was turning into the homeschool version of the kid in the classroom who's always hopping out of his seat for the toilet, for water, for the pencil sharpener, to pick up his ruler,look out the window, etc...

Then he started having trouble retaining all this water.  Well, no wonder, I thought, of course he has to go to the bathroom all. day. long.  He started making way-too-frequent trips to the bathroom throughout the day and night.  There were nights when Aaron was waking up every hour to use the toilet.  Even still, he would also wet the bed almost every night.  Aaron was very frustrated and confused by this since he'd never had a problem with bed wetting before.  He would apologize every time it happened, and although my heart went out to him, it was also trying my patience.  During the day I'd wonder why he couldn't control himself better and I'd encourage him to "hold it."  And at night, Russ and I were both losing sleep because one of us was changing his sheets and pajamas every night.

A few times I Googled "excessive thirst" and "Diabetes" would come up.  I still didn't think too much of it.  I mean, he's not sick.  He's just drinking water and using the toilet.  Everyone does that.  Right?   My good friend is a nurse, and  I remember when I mentioned his increased thirst and urination she said, "Well, diabetes is the first thing you think of."  So, at that point, the word diabetes was on my radar, but I knew nothing about it.  And I really didn't want to call the pediatrician and be that paranoid mom who called because her son drinks a lot of water.  (I could just picture all the nurses laughing in the background at that one.)

So we waited.  And we kept "keeping an eye on him."

One day I noticed brush burn-like scrapes on the insides of Aaron's wrists.  He had gotten them riding a scooter at an indoor gym, two weeks earlier.  Why weren't they healed yet?  Again, my first thought wasn't diabetes.  It was maybe Aaron keeps picking at them and so they won't heal.  He assured me he wasn't, and so I kept an eye on it.

Aaron's behavior and level of activity seemed to mellow out during this time.  Lethargic might be the word.  Typically a very active and energetic child, Aaron was more and more content to sit around doing puzzles, playing with the Rubik's cube, and looking at books.  I didn't think it was strange; it was a welcome change from his usual go go go energy which can get a little trying during the long winter months inside.  

Then we started to notice how much Aaron ate.  It was a lot.  Helping after helping after helping, especially at dinnertime.  We usually portion control the kids' breakfasts and lunches, but they can eat as much as they want at dinner.  And he did.  In the beginning it was sort of humorous, or at least one of those things you notice and say, "Wow!  You can really pack it in!  You sure are one growing boy!"  But after a while we could see that he wasn't growing.  Aaron actually appeared to be losing weight. 

I can't forget the day I saw it clearly.  The day I realized something is definitely wrong.  The day I said, "We are done keeping an eye on him.  We are going to the doctor."  It was the Sunday after Easter and we had decided it would be a fun treat to take everyone to the indoor pool to celebrate the end of "Spring Break."

Aaron stood before me in just his swim trunks.  I was shocked.  I felt an uneasy anxiety in my chest as I stared at him.  His skin was chalky and gray.  His arms and legs and waist were uncommonly thin.  His eyes were sunken and his cheeks hollow.  At the pool, Aaron got out of the water after 10 minutes.  My loves-to-swim son was too tired to stay in.  He sat on a deck chair practically begging to leave.  Oh my God.  How could I have let it get to this point?  I wanted to get him to the doctor immediately.  Monday morning seemed so far away, but we would have to wait until the next day to take him to the pediatrician. 

That night I Googled it all, and it came up again.  Diabetes.  I still had no idea what that meant. 

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a photo of Aaron taken about 1 week before his diagnosis

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Know the signs and symptoms of type 1 diabetes...
and don't hesitate to call your pediatrician if you recognize them in your child.

Common symptoms of diabetes: 

Urinating often 
Feeling very thirsty 
Feeling very hungry, even though you are eating 
Extreme fatigue 
Blurry vision 
Cuts/bruises that are slow to heal 
Weight loss,  even though you are eating more (type 1) 

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Please check back throughout the week for Parts 3, 4, and 5 of this series.

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