A day-in-the-life of the dreaming of, the supporting of, and the talking of the elusive cure.
Wednesday, December 29, 2010
A day-in-the-life of the dreaming of, the supporting of, and the talking of the elusive cure.
Sunday, December 26, 2010
A special "Thanks" to the Houston Family for the Ornapod. It will grace our tree yearly as a reminder that we are not alone even on Christmas. Not sure why I decided to pound out this post this morning. I think it is to highlight how "d" is part of everything, everyday. Managing it does not take a "break"....even on Christmas. I wrote the "d" management parts in red (a Christmas-y and blood-y color). I am a bit twisted.
And now...the post:
My eye lids were heavy. I was patiently waiting. I was sitting and watching TV. It was Christmas Eve. The children were tucked in their beds. They were ready for slumber to ensue; knowing that when they woke Santa would have come and gone.
8pm - Joe's blood glucose is 323, a correction dose of insulin is given.
Joe is asleep. This doesn't surprise me. Just as Joe attacks his days with gusto, he sleeps with equal vigor and tenacity. Bridget is belting out Christmas Carols while laying in her bed; her eyes sparkle and dance in the dim lit glow from the lights on her mini-Christmas tree. She is excited and having a difficult time falling to sleep.
So, I wait.
By 9pm Bridget is now asleep. I am able to unleash my Santa-fury, as Dave "stands guard" watching TV. I am setting up Beyblades...I am displaying a mannequin doll head with make-up and hair accessories, damn she looks a little creepy. Gloves, candies, Japanese erasers, lottery tickets, whacky beads, Phineas and Ferb Silly Bandz, etc... etc... are stuffed into stockings. Oscar gets a retractable leash. Shit, I didn't get anything for the cat, Max. I'll have Dave scrounge him up a can of tuna or something.
I am done.
10pm - Joe's blood glucose is 190, I let Dave know that he should check him in an hour. I am afraid that Joe will continue to drop from the correction dose of insulin that I gave two hours ago.
Santa goes to bed.
11pm - Dave checks Joe's blood sugar. It is 99 and 8 grams of carbs are dispensed.
2:30am - A "Happy Christmas Eve or Merry Christmas Daddy... I am not sure which it is...what time is it" in a lispy-Joe-voice is heard, as Dave goes in for the night check. Joe's blood glucose is 59. 15 grams of carbs are given. Dave lets Joe know it is Christmas.
Joe doesn't go back to bed. I can hear pages of books being turned as he reads for the next few hours. We had a pact that no one was heading downstairs until 6am. To Joe's credit, he played and read in his room quietly for 3 hours. Impressive.
6am - Joe's blood sugar is 118. No one is heading downstairs to the basement to appreciate the "bounty" until a blood sugar is obtained and coffee is brewing!
Stockings are undone. Beyblades are battling. Freaky mannequin head doll is now made up to look like a cheap Ho. Yes, this coming from the gal who dons teal eyeshadow.
8:50am - Joe's blood sugar is 148. Dave prepped eggs, hash browns, bacon and assembled breakfast burritos. Joe's food is measured, carb counted, and he is bolused with insulin to cover the meal.
The house now becomes a massive assembly zone. The Galaxy Marble Mania takes over. Joe has two Lego projects going on at once. The mannequin doll head now gets an equally interesting hair-do to accompany her make-up job.
11am - Joe wants a sugar cookie snack. Fine. It is Christmas after-all! Blood glucose is 223. Sugar cookie is consumed. Insulin is bolused.
Bridget is now sewing, practicing her back-stitch. She hasn't broken out her new sewing machine yet...but, get ready Haitian Children! Non-stapled pillows are headed your way! Joe continues to leave a path of destruction in his wake, as every new item must be opened and assembled at a break-neck pace. Dave continues to assemble Joe's Galaxy Marble Mania from hell. The body-less, headed mannequin doll is still hanging in the living room creeping me out.
1pm - Joe's blood sugar is 170.
Joe heads outside in candy-cane stripped PJs with a coat, boots, and a sock monkey hat pulled tightly over his head. He is wielding a hammer in one hand and a sack of geodes in another. He is ready to crack open the rock cavities to view the crystal-draped interiors.
Dave continues to curse at the Galaxy Marble Mania.
4pm - Joe's blood sugar is 60. 20 grams of carbohydrates are given, as we are heading out to play hockey.
Dave just finished the Marble Run. He celebrates with a beer. Bridget is making chocolate candies with her new "Chocolate Factory".
5:30 - Joe's pre dinner blood glucose is 63. I have him boost with 1/2 a sugar cookie as dinner is still about 10 minutes out. We sit, we do a combined grace/toast and we eat. Pasta is measured. Milk is measured. The crescent roll is carb counted. The carbs are added. The pump is programed to bolus. A combo bolus is used to handle the pasta. Desert is eaten...another sugar cookie. The pump is programed. More insulin is dispensed.
We watched Santa Buddies as a family. The children are a bit tearful at the end of the movie. In part I believe due to the movie's message and in part because the day, Christmas, is over. I explain that every day can and should be like Christmas. To live life in such a way that your heart feels "good" in response to your actions and reactions. Bridget remains tearful.
8pm - Joe's blood sugar is 294. A correction dose of insulin is programed into his pump. Insulin is delivered.
Joe is fast asleep. Bridget is still crying. She and I fall asleep in my bed together holding hands.
11pm - Joe's blood sugar is 295. A correction dose of insulin is programed into his pump. Insulin is delivered. An alarm clock is set for 2 am ... for the next blood sugar check.
Christmas is over.
A day-in-the-life of parenting a child with Type 1 Diabetes...even on Christmas.
Tuesday, December 21, 2010
Joe and Bridget Skating...
A day-in-the-life of family fun, never to be let be by "D".
Monday, December 13, 2010
Joe, sporting the SPORT Belt with TWO clear windowed pockets, one for his pump and one for his Continuous Glucometer Receiver
Joe WEIGHS-IN on the Sport Belt!
I LOVE HIS VOICE! HATE mine! And...NO...he didn't learn his dance moves from me.
Tara, or ULTARA as she is now known, is having a TallyGear Giveaway that just got even better...go check it out at Mommy's A Runner! You have until December 16th to enter. Good Luck.
To double your chances of receiving quality goods for "F" "R" Double "E" head over to TallyGear's current Giveaway. It lasts until December 17th.
Or go to Tallygear.com to order pump packs, sport belts, and/or headbands.
Well, here is a little background on Donna and Tallygear and our love of the product.
It took us 4, yes F-O-U-R long years to find a pump pack that fit Joe's needs as an ACTIVE little boy. Every time Joe would run, jump, careen, skip, play soccer, participate in baseball it would break my heart a little to watch his damn pump and pack bounce and jiggle up and down as he was out living life to the fullest. Though he never complained, the "pump jiggling" bothered Joe. I am happy to report this is a NON-ISSUE any longer.Why?Because Tallygear is on the job.
Tallygear was started up by a mom just like us. The company is named after her daughter Tally who was diagnosed with type 1 three years ago (click here for her story). See the following written by Donna (Tally's mom and co-founder of TallyGear) to understand why this woman and company are so near and dear to my heart:
What is different about these packs you may wonder. Well let me tell you...because I have tried the whole INSULIN PUMP PACK GAMUT in 4 years SEARCHING for the PERFECT PACK. First off you can order XS, S, M, or L. For those of us with young children with "d" you know how difficult it can be to find a pack that fits appropriately. Secondly, this pack STRETCHES 4 (that's right FOUR)ways. This keeps Joe's pump secure and flat against his body. There is NO MORE BOUNCY pump/pack action as Joe runs and plays. Also, the price for these packs is REASONABLE! I have hit the pump pack JACKPOT. For CGM users and/or people who want to bolus but don't want to remove the pump or CGM from the pouch, a CLEAR WINDOW can be sewn into the pockets.
"When Tally first got her pump pack I did buy from 2 other
companies...they were the web belted ones and they were cutting in to her sides
and jumping on trampoline was a disaster (holding that freaking pack while she
jumped.... as I cried).....next step a trip to Walmart to buy a spandex shirt I
knew I could come up with something ...I just didn't know where it would all
take me......you now know how that all worked out... ...a.k.a.Tallygear. Almost
2 years ago now...."
A day-in-the-life of sharing about our friend Donna.
Saturday, December 4, 2010
Wednesday, December 1, 2010
Friday, November 5, 2010
to choose to have hope, what one is going to have hope for, and if they are
satisfied with the journey of having hope.
For one to have hope they need to be able to envision positive outcomes and
they can even see the pathways in which what is "hoped for" is achieved. Many
persons with diabetes have said to me that they have been "promised" a cure for
years. "A cure is just 5, 10, 15 years away". Years and decades come and go, yet still "the cure" eludes medical researchers.
I look at the path of hope and the path to a cure as a "stairway". You
need to have your footing on each step to progress to the top, to your
destination. With each discovery regarding type 1 treatment, with each finding
of a new technology, with each failed "cure" scratched off the list of what
researchers are currently working on we take a "step" up the "stairway" of hope;
up the "stairway" toward a cure....
So, back to my dear Joe. He is practical. He is mature in many ways beyond his years. I think in his heart of hearts he knows there is no way that even Santa can muster up a CURE. But, together, someday, sometime, maybe not in my lifetime, possibly not in Joe's lifetime, but in future generations perhaps the elusive CURE will be found. In the meantime, we must all work our way up the "stairway" one step at a time. Research must be funded; potential CURES investigated; failed theories crossed off the list; new hypotheses studied; more trials conducted. Each trial, each tribulation, each setback is a step in the right direction.
So, after I visited Karen's Bitter-Sweet yesterday I asked Joe's permission to place his picture and his story on the Diabetes Research Institute's Banner for a CURE. Joe was "in" on that action.
Monday, November 1, 2010
Wednesday, October 20, 2010
Monday, September 27, 2010
Have you ever been curious about what each of our homes look like? What does Meri's new house look like? Hell, is she even unpacked yet? Where does Heidi blog from? Where is Joanne curling up to catch this season's Amazing Race?
I am curious, I bet you are too.
So, today, for a lack of much to say due to my compressed and ischemic creative brain cells slowly necrotizing from the mucous influx and extreme "eyeball-popping" pressure after a pitiful attempt to do "Plough" during Yoga X, I am going to show you around our home.
The Mudroom (10' by 18' of pure awesomeness)
WTF? Seriously look at the nasty water.
Ah, yeah a jawbone from a cow? moose? We don't know. Any thoughts?
Joe made a snow globe out of a baby jar, and scrumpled up tin foil....hmmm.
Grand Central with Joe's Log...the orange highlighter is HIGHS/blue is LOWS.
Our Family Contract...Note: the "no whacking with a shovel" - Joe's idea.
Laminated Allowance Expectations
Where all the "Blogging Magic" happens. AND where "Pancake Ass" takes place from the long blogging hours I have put in this month.
Cute Broom Closet
Oh look, it's a sharps container! What home is complete without one?
Oh and in pantry #2 we have more "d" supplies!
My favorite painting. Bridget thinks the blond girl looks possessed.
More treasures... remember all of the boxes of rocks I moved?
Saw this guy as I was taking pix...couldn't resist. Funny how Lego people cannot look violent even with a machine gun in their hand. Why is that anyway?
Saturday, September 25, 2010
Special thanks to Misty's MeMe post, Cindy's candidness, and Renata's gracious post for giving me the courage to post on my husband and our relationship with "d" in the mix.
Nyquil, Ibuprofen, Afrin, Advair, and Xopenex are my best friends. Well, I take that back, my husband is my best friend. He manned the house, kids, dinner and movie night while I was medicated and sedated for the previous 13 hours. My drug-induced medicinally-crafted sense of wellbeing has me upright and ready to post this morning. I have decided to share with you, today, about my other half. Not necessarily my better half, come on, you guys knew I wouldn't give him that much credit. I am your vain Portuguese Princess after all. I think with Dave and I, the sum of our halves equals a pretty spectacular, synergistic whole.