Embracing Life & the Child with the Disease

Archive for the ‘Diabetes – The 1st Year’ Category

Ryan’s Top Six

Today is D-Blog Day.  D-bloggers might use the prompt to write six facts about Type 1 diabetes.  But I thought it might be nice to get Ryan’s perspective, six things from a six-year-old who lives with the disease everyday.  These are his exact words, his thoughts and maybe in some sort of order of importance.  So here goes, from his very lips:

  1. I have 4 shots everyday that has insulin, but I’ll be pumping soon!
  2. I got diabetes because God gave it to me, NOT because I ate too much sugar.
  3. I CAN have candy but I have to have insulin for it.
  4. If I don’t get insulin, I’ll get sick.
  5. I’m different from Type 2 because their sugar is high and mine’s high AND low and I can’t take pills for it. 
  6. My mom has to check my sugar in the night.

There you have it.  I often get stuck on #2.  Sometimes I think he came to that conclusion because he has heard so any that are uneducated; sometimes I worry about what people say to him when I’m not around, like at school.  My dad is a Type 2 diabetic.  I know it’s hard on him to control his sugar.  I know there is a daily regimen of balancing food, exercise and medication to get/keep his diabetes under control.  But I also know what he deals with is so very different from Ryan . . . and so does he. 

As a momma watching her little miracle live with the disease, here are my six things I want you to know:

  1. Ryan does not have diabetes because I was a bad mom and gave him too much sugar or allowed him to eat unhealthily.  Type 1 diabetes is an autoimmune disease that is genetically predisposed AND was “triggered” by an environmental factor (virus, immunization, etc) that caused his body to fight off and eventually kill all the beta cells in his body that produce insulin.
  2. On December 17, 2009, our lifestyle changed forever.  We have adapted a new normal to our schedule, our eating habits, our sleeping habits, our everything.
  3. Diabetes goes everywhere with us and does not sleep.  We can take no vacation from it.  We can have no days “off.” 
  4. Managing diabetes is certainly possible but IT IS HARD.  Everything effects blood glucose levels:  food, exercise, stress, sleep, anxiety, excitement, temperature, sickness . . . you name it, your sugar is effected by it. 
  5. Type 1 Diabetes is not terminal but it is lifelong.  It is most daunting to think that Ryan doesn’t grow out of this condition.  We can do nothing to fix it.  His pancreas will never recover.  I pray daily for a cure.
  6. There is life, normal, full and healthy life after diagnosis.  With all its exhausting regiments/routines/therapies/precautions, etc, Ryan can grow up being confident in the FACT that diabetes does not keep him from doing anything he will ever want to do . . . diabetes just has to come along for the ride.

Watch Ryan’s 24 second pledge now . . . http://www.youtube.com/watch?v=r14K0GP0NeY

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Comfort in a Shared Latte

Today I was fortunate enough to sit and have a pumpkin spice latte with my newest friend, my newest D-MOM FRIEND (and to protect her privacy, I will just refer to her as “Friend”).

Last year, Ryan was the only T1d child in the school.  This year, her son who is in kindergarten (in Aaron’s class) was our school’s second addition.  “A” was dx’d in June.  Nurse G introduced us back in August and thought maybe we could connect at some point.  Well, you know how life is . . . we finally were able to do it today!  November is better than never, huh?

It was over three hours of the best therapy ever!  And it was free!  It involved glassy-eyed moments, some laughter and a lot of “get it” nods.  We talked about food, insulin therapy, pumps of choice, dx day, how we are coping and more!  It was fabulous. 

The d-oc has been the secret to my survival of the first ten and a half months of life with D.  I love each of you dearly and value you more than you know.  And on days like today . . . I miss you.  I get sad because we don’t get to see each other all the time.  I’m sad because it’s just too big of a world and miles separate us from simply just being together. 

But nothing beats the physical hug shared between one d-mom and another.  Why else do we write (((hugs))) to each other all the time?  It surpasses any words, any advice, any encouragement.   Just (((hugs))).

And I must say . . . I love her already.  I am so excited about having someone blocks away, who has a child in the same school, who just GETS IT! 

Our nurse is incredible.  We were talking about how wonderful she is and swapping lunchtime shot stories.  Both A and Ryan are told that if they don’t finish lunch, they can come eat with G in the office.  There is a little table there with some books.  A’s lunch is right before Ryan’s, so sometimes they run in to each other.  G evidently called my friend to let her know about A’s lunch bg and just connect.  She asked what he was doing, how he was acting, if he was okay.  She laughed (I’m sure she did although Friend did not say so because that would just be G) and said A was sitting at the table eating lunch and Ryan was sitting with him reading him a book.  Would’ve given a million bucks for a pic of that!

But I needed today, more than Friend even knew.  It helped me just for a little bit, in the overwhelming of life, to just breathe and listen and be heard and understood.  Ahhhh . . .  

Love to all my d-mommas tonight. I really do miss you! (((HUGS)))

And love to my new Friend today.  Looking forward to many more coffees, lunches, outings together.  ❤

#s

Make heads or tails of these numbers:

A) >14 . . . >1000

B) >14 . . . 8.9 . . . 6.8 . . . 7.9

C) 110 . . . 142 . . . 111 . . . 111

D) 59, 62, 65, 64, 70, 53, 39, 54, 64

E) 267 . . . 190 . . . 246 . . . 265  . . . 171 . . . 258 . . . 309

F) 1:15  . . . 1:12 . . . 1:18

G) 0 + 15 + 2 + 13 + 14 = 44 . . . 1:18 . . . 2.5

Translation:

A) Ryan’s A1c and ketone levels on diagnosis day

B) Ryan’s A1c from the beginning

C) Our best day ever, May 9, meal and bedtime sugar readings

D) Our scariest 15 hours ever when we literally had this many lows when he was vomiting; there were some numbers in the 100s intermittantly, but mostly stayed in the lows

E) Our pump homework week of 3am checks (Yes, we did raise Lantus after this week!)

F) Our meal ratios, breakfast, lunch, dinner

G) Ryan’s dinner carbs one night last week, his dinner ratio, the units of Humalog given

And in the world of Type 1 Diabetes . . . these are just a few! 

My major in college ENGLISH . . . my worst subject . . . MATH!  My new best friend . . . Mr. Calculator!!!

UGH!

I have struggled to post all day. 

I have nothing positive to say about D today.  For over a week straight (and off and on for over a month now), we can’t get Ryan’s sugar down, no matter what we do.  We have changed ratios, upped Lantus, altered diet, eaten more consistent in a schedule, and it’s either between 200-300 or we are treating a low.  WHERE ARE HIS IN RANGE NUMBERS???

Not to mention we have an endo appointment in two weeks and if we keep at this rate, I won’t even share how awful it’s going to be.  UGH!!!

But Jason has been home all day today.  We have heard the boys laugh a lot.  We packed three boxes tonight for Operation Christmas Child.  Aaron told me he loved me FIRST today.  Ryan showed us some new dance moves.  And Ethan has made me feel old while listening to his mp3 player and singing while totally oblivious to my watching him.  I guess there is life beyond D although on days like today, it’s just so hard not to be overwhelmed by it.

Ryan isn't as sad as he looks; he is actually laughing.

Currently, I am watching Ryan lie on the floor on his belly, pants pulled down just a bit exposing his bottom, Jason on one side with Lantus and Ethan on the other with Humalog (as I was typing, his bedtime number was 306, so he has to have sliding scale before bed).  They are all three dying laughing.  I have no earthly idea why.  For the life of me, I can’t see the humor in it all tonight.  But I am blessed to have boys who do. 

I’ll “bounce” in the next day or so . . . just right now, it’s hard to keep in perspective that it’s just the “dark before the morning.”  But I’m working on it.  http://www.youtube.com/watch?v=mfWAG-bnttQ

Pump Update . . .

For those of you following our insulin pump journey . . .

I just got off the phone with or pump of choice . . . OMNIPOD.  The PDM (personal diabetes manager – the handheld device) and one month of pods will arrive on Tuesday or Wednesday next week. 

I spoke with a CDE today and they said they have us “penciled in” for a December 9th, six-hour class to learn how to use the OmniPod and learn new insulin therapy.  If I understand correctly, we will have a week of saline trial, a follow-up class to go over those results and then we can go live when we are ready. 

It’s going a little quicker than I first anticipated.  Whew!

P.S.  My baby, Aaron (5), came home today wanting to take his Kindergarten teacher a blue jelly diabetes bracelet.  I LOVED that!  ❤

And it’s the nurse, again!

Blogging every day for a month . . . Diabetes Awareness Month . . . my brain’s pretty fried but here’s how D interrupted life today.

It’s been a busy day here.  Grocery shopping, cleaning, laundry (just a little), reading, studying for a lesson and on the phone making appointments and medical phone calls for one of my non-d sons.  My back hurts (and I’m a little concerned about it) and, of course, like 99.9% of all of mankind, I’m tired!  And not to mention all the other non-d issues that bombard everyone’s life!  Whew!!!

Ryan’s sugar has run high for weeks now.  Just about the time I go to change a ratio or something, he has a low and I think, well . . . let’s wait a bit.  Then high again.  Then a day or two of ok.  Up and down, up and down.  I feel seasick.  No ketones though, thankfully!  Because he’s been high so much and then takes a dive here and there, he has been at the nurses office a lot lately checking.  He goes on his own, as much as he wants and no one EVER questions him. 

This morning I told him to go to the nurse when he needs to but ONLY when he needs to.  See, he so loves her and the front office ladies.  The principal told me a month ago that Ryan “owns the front office.”  Hmmmmm . . . little bugger!  Nevertheless, I told him not to take advantage of the freedom they give him. 

At 8:46, I get an email from the school nurse, “Came down at 8:40..  Blood sugar was 161.”  I apologize and tell her I will remind him again to only come when he needs to.  She replied, “Don’t worry Mom, I rather him come then not come.”  She’s awesome!

At 11:29, another email (our daily email), “Blood sugar prior  to lunch was 176.”

At 12:28, I get a phone call from the nurse, “Ryan came down to the clinic, said he felt low ~ 57.”  We discussed treating with juice, waiting 15 and she would call me again.

At 12:46, another phone call, “He’s 89.”  We discussed how he was acting and determined he was ok, to go ahead and eat his 1pm snack (because it was crackers to counter act the sugar of the juice and keep him from spiking then crashing) and go back to class. 

At 1:41, another phone call, “Well, he came down again, looks a little pasty and took his sugar, he’s still 89.”  Then she says, “His eyes have that glassy, absent look.”  My reply, “Ok, G, I give . . . I’m on my way.”

So for those who think that D is just cut back on the sugar and he’ll be fine . . . I tell you to try to get anything done walking in our shoes for a day. 

Granted this isn’t typical, but definitely a possibility every day, and we’ve definitely done this before. 

On a positive note . . . I love our nurse.  I love my boy.  And his sugar went up to 161 about an hour later.  🙂

A Diabetic’s Appreciation

A few weeks ago, I bought some Reese’s Peanut Butter Cups (10g carbs each) and some Hershey’s Kisses (3g carbs each).  I do not buy candy very often anymore for obvious reasons . . . I need to lose some weight!  But I seldom leave it just hanging around on my pantry shelf.  But that day, I decided we would have one Reese’s cup and two kisses for dessert.  When I busted them out after dinner, you would have thought I just laid gold on the table.  Ryan ooo’ed and aaahhhh’d.  Then he would take tiny bites and roll his eyes back in utter euphoria about the sweet taste of chocolate melting in his mouth.  He giggled and laughed and called me the “best mom ever” about a hundred times.  The single dimple on the left side of his face didn’t disappear for hours. 

There was a great lesson learned here.  A life lesson.  I took so much joy in watching him appreciate such a simple pleasure.  Oh the things we take for granted.  Chocolate should be like that for everyone (and it is for some of us ladies who crave the sinful stuff). 

Just to remind you of his sorting abilities

So it was no surprise that Halloween brought on a particular sparkle out of my precious “sweet” six-year-old.  I showed you the picture of how he separated out his candy in groups and sorted it all out to see what he had.  He never one time asked for more than I told him he could have that evening, just spent a lot of time staring and smiling at it all.  His whole body language screamed, “JACKPOT!!”

I didn’t make them clean it all up and put it away until late Monday morning after they had bartered and negotiated several trades. 

Yesterday, I got in Ryan’s bag to sneak a piece of candy and this is what I found:

Front side of the page

Back Side of the Page

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Isn’t he amazing!  He cracks me up.  He took written inventory of all the candy he had in his bag.  Made me think twice about stealing out of his bag.  So I moved on to Aaron’s!