Holiday Excitement... (dear diary style)... 'tis the season

They say.. :"'Tis the season"... apparently for us to have hospital visits and/or avoid it...

Last week Jared was admitted to Children's while trying to deal with plantars wart on his big toe... Yeah, I know.. and Jared knew.. he said it quiet elequantly " I can't belive I am in the hospital for a wart on my toe!" Granted .. he had kiddie vicodin on board at that point, and the pain had subsided from the IV antibiotics they were administering... still... seems crazy that just because a kid is diabetic, and their body cannot best fight viruses and infections (Especially in extremeties)that they are hospitalized for it... the good that came out of it was that 4 days later.. in the night... the body rejected the infection, and sloughed that wart right off his toe.... call it an early christmas present ;)

We love the pod, however we are now pretty certain after having 2 more failed pods (since the last post) that there was a faulty case we had, and the shipping was likely the cause... with our experience now, we can just give injections to jared throughout the night and avoid having to wake him for a site change when we anticipate that the high sugars.. which could be hormones or anything... are likely a faulty pod.. we again avoid ketones..
Flash forward.. next pod, same box... 3 hours in the car to get to Vancouver between snow storm bursts... and we can't get his BG below 360.. way too high... we can't really stop to check ketones, but have a willing kid to check his bg every hour.. so mama's intuition kicks in again and I double his insulin bolus... yikes.. but we are prepared with juices and others things... but no need... our best attempt with doubling insulin only brings him down to the 279... we arrive almost 5 hours later, check for ketones and those buggers still snuck into his system... (side note* and a bit of foreshadowing* he is still on antibiotics from the toe insident) we get him to drink tons, and keep bolusing with insulin.. by 1am he is 140 and ketone free.. we sigh, and go to bed... that next morning he wakes at 67... a bit low, but a quick sigh again.... after breakfast... the battle is on... we can't get him to drop below 260, which we can handle.. but just before a trip to the snow hill to sled.. and he runs upstairs, and drops to the floor with his hands over his head... I come upstairs to find him with a "headache" and not feeling well... sh*t is what is going through my mind... there is a snow storm outside, and we are in 2 feet of snow... which would not be bad, if we were not already 1.5 hours from the hospital here we trust...

okay, so these details are only because we were reaching... looking for answers as it is now christmas eve and Jared can't get himself out of the bed of a dark room.. he is starting to get a fever and is "spitting" from the "extra spit in his mouth" and making deep sighs... his urine PH has changed, and has had ktones off and on for a few days... Sh*t again, is going through my head... i call the hospital nurse line, and it is out of service for the holidays...we fortunately have 2 more phone resourses and get a nurse eventually on the phone who is telling us that jared could be in acidosis and may need help sooner than we can get it for him... we treat the fever with tylenol and the spitting stops, the moaning subsides and we all look at him, and he is responding positivly and we think we can avoid a trip to the ER in a snow stom.. he falls asleep a few hours later, the fever (which the dr's were nervous how a child on antiobiotics could have a fever) does not return.. that night, he coughs in his sleep.. looks like he was just fighting a cough that was trying to come on.. a virus... for the first time, i am relived to have a cough with a fever... I was dreading that it was acidosis... I am not ready for that road... especially if it is icy and unsafe ;)

we made it through christmas, we got to play in the snow and the kids had an amazing time...

This year, we had a turkey dinner for christmas, for me... it felt more than ever likes thanksgiving.. I am so thankful for our health, our happiness and our intuition.

I hope you are all safe and healthy this holiday season. Happy Holidays.

What can you trust??

Last weekend Jared avoided an ER visit, and I hesitantly say, it was only beacause of our last ER visit that I had some Anti-nausea meds to help us beat the ketones at home... reason... Failed Pod.

Jareds average for the week was 145... and we did a pod change, (we love our pod!) .. but now has a mild trust issue with... He was 140, went to bed.. at midnite went up a bit to 230, which while sleeping and growing and every other unknown variable... was not too abnormal.. bolused him and went to bed... 3 am his sister woke and started asking for breakfast.. now to put this into prospective, aside from the fact that we were out of town visiting family and it was only our first night there, everything but this had been normal.. she was sharing a bed with Jared, and just kind of kept herself up, fussing and convincing us we needed to wake.. Jared heard the rukus, woke and said he had a tummy ache... we are sleepers and all this seemed 'not quite right' a quick bathroom trip and a bg check and we are at 372... hummm... ketone test to quickly follow.. and after a pee.. this is not easy to force ;)

Large off the chart ketones.. how the heck did this happen... must be the pod, i quickly double the amount of insulin the pod has suggested, and don't wait too much longer.. of course called our childrens hospital hotline.. but get this.. (and we love them there too - ) I asked specifically for the on call Endo DR.. and got 3 nurses before they all suggested we call a dr on call.. well the call from the dr was taking way too long... I was in Canada, and gave them my number there... and no call... (after we got home 3 days later, we heard 3 messages from the dr trying to reach us) way to read the reports with the current number!

It was time for mama instinct.. and this meant using the coveted Zofran (anti nausea for Chemotherapy patient) med to be dissolved.. he had not thrown up, but was so naseaus he could not even open his eyes.. (I was hoping this was because it was not even 4:30am and we were all way too tired.. but this was not the case...) he took it, and it takes 20 minutes to work 12.5 minutes later.. the vomitting started :( we thought we lost that valuable little pill :( but after only 4 sessions of vomitting... it stops.. he starts to feel better...

the Dr calls, was thankful we had the meds that the ER would have given us .. which was where she was going to direct us... (but seriously questioned how i got this med in my hands) and suggested we really change the pod, not knowing if that was the cause...

we change the pod, and do some serious injections as well to boost his changes of beating this.. after all there were cousins to play with and grandparents to hang with ;)

12 hours later,... by late afternoon, we were in the clear... NO ketones.. woah! that gave me a huge sigh of relief...

and a wake up call...
1. always be prepared with ALL types of meds that our children may need while we are away
2. don't let your kid convince you out of putting on thier CGM if they have one (because of guilt)
3.Really try and avoid changing a pump or pod right before bed... we hear it, we try not to, but really... avoidance can prevent this day from happening middle of the night, and hopefully catch when numbers are usually more stable.

So when I call Omnipod to tell them about the pod failure, they ask for it back.. I am cool with that... they even ask if they can call back to check how my son is doing...

I mentioned to her that I was calm and friendly because this was not her fault.. but this is a BIG deal and they need to look into the pod failures.. 2 in one month - NOT OKAY!! these are people, in this case a child wearing this... Double, triple check and pad the pods more if you have to in shipping.. because no matter how nice was was on the outside, I was pissed and sad on the inside.

it is over and I am getting ready to pack for another 2 weeks in canada... and wel put it this way.. the medical supplies are going into their own suitcase.. with tons of back up!

A dear friend - 4 years ago today...

I got this from a very dear supportive friend today and wanted to share her words:

Four years ago today I was standing in the hallway of the hospital ER when the Doctor looked at me and said "this kids got diabetes, we need to get him to Children's now!"

Four years ago today my two-year-old baby boy was lying on a gurney in an ambulance, racing down 1-5, with eyes as big as saucers, breathing rapid shallow breaths, when the EMT looked at me and said "he can only breathe like this for so long; his little body just might give up". Four years ago today my son was in the Children's Hospital NICU fighting for his life. Four years ago today my family's lives were changed FOREVER.

Four years ago today I learned all about the disease of diabetes; and that it would be Kevin and I's responsibility to keep our son alive. Four years ago today "diabetes" became a part of every hour of everyday ofour lives. Four years ago today Jackson poked his finger for the very first time. Four years ago today we began injecting Jackson with insulin to stay alive. Four years ago today I didn't know what "a low" was. Four years ago today we didn't fear seizures. Four years ago today my son's life was saved.

Four years ago today will NEVER be forgotten. Today is a day in my family to remember.... The day Jackson was diagnosed with Type 1 Diabetes. December 8 has changed our lives forever, and yesyou would think that after four years it would not be difficult, that itwould not bring tears, anger, regret, sadness, questions, arguments, andfear. This year is actually worse than the last. This year I am so thankful to have my baby boy at the age of 6 with his first loose tooth, precocious as ever.

Today is important in my house and I wanted to share this with all of you because the month of December for many is a time for family and love. Today could have been a much sadder day for me but because of the wonderful doctors and people in our lives, along with a mothers intuition, today is the day we received a diagnoses. Today is the reason that our home hopes everyday for a CURE and the reason that I have relationships with many of you.

Delicious recipe for the holidays or anytime...

So we played around with our new ingredients.. and we had a great time.. and YUM the outcome was well worth the adventure....

Our version (D friendly) of no bake coconut balls or stacks

1 cup Shredded coconut
(We used Premium rich desiccated coconut by Kara) (got it at asian grocery store)
2 Tbsp Coconut oil
(we got Spectrum organic coconut oil by Spectrum) (found it at whole foods)
2 - 3 tbsp Unsweetened Cocoa powder
(we used Trader Joes)
1 tbsp Agave
( we used organic blue agave - low glycemic sweetener by wholesome sweeteners)
Vanilla to taste (approx 1 tbsp)

** optional garnish 2 tbsp whipped cream

we first put the coconut and cocoa powder in the bowl and added the coconut oil one tbsp at a time and making sure to mash it up good.. the temp in our house is pretty cold right now, so it pretty much in the form of a (crisco type product) we added the other ingredients and mixed it up well.. it was not looking promising for forming into balls or stacks, but tasted delicious.. we put it in the fridge for 30 minutes and then VOILA! we had perfectly formable 'stuff' to work with . This recipe divided into 4 or 6 nicely and we served it with whipped cream since 2 tbsp of the real whipped cream only adds 1 carb... and they dipped the balls in and licked the plates clean!

I would say it was a real hit and you can serve on a platter for guests, or plate for a dinner/dessert scenario

The great part is that the ingredients worked so well with Jareds BG... we divided all our ingredients leaving us at 8 grams a ball and depening on the size.. when we make 6 balls, we are at less.. and the taste was divine to the kids...it it did not have any spikes...

We are planning all our ingredients to canada with us when we go up for the holidays to make these.. they are delicious to anyone who likes coconut (and my kid's did not know they liked coconut before this)

Hope it works for you guys.

The ingredients were hard to find at first, which is why i posted where i found the harder to find ingredients.

New ingredient...and a recipe...

So When we were visiting my brother a while ago and were at a farmers market (yup he lives in CA, hence the markets are still open this time of year) we stumbled upon a dessert that was 'sugar free' without artificial sweeteners and seemed to get along with Jareds BG :) It involved Raw coconut, pure unsweetened cocoa, pure shredded coconut dried, and agave for a bit of sweet.

I was looking for the recipe for raw coconut haystacks... and in my searching found this other interesting recipe which would be a great to try...

The Raw Food Frosting Recipe I got was from a post on the Raw Freedom Community. While this recipe features lemon juice, you could make the same recipe with most fruits. I have reprinted it below with the bloggers modifications. (cupcakeproject.blogspot.com)

1 C coconut oil
1/4 C agave nectar
rind from 1 large lemon
1/4 C lemon juice

Beat the coconut oil until creamy.
Mix in the agave nectar.
Mix in the lemon rind and lemon juice.
The frosting will spread well. However, it will not be thick enough to pipe. After you put it in the refrigerator, it will harden.

I liked it much better cold and would strongly recommend serving it that way.

I have heard that both raw organic (if possible) coconut oil and agave are both low glycemic and pretty balanced overall for blood sugar responses..

This is the time of year when sweets come out and it is always a good idea to have some good 'D'Friendly recipies up your sleeve.

If i find the one for the haystacks.. or experiment and succeed... Iwill post it too.

A prospect of a cure..?!?! sooner than later???

This was released NOV 17, 2008

http://www.msnbc.msn.com/id/22425001/vp/27774926#27774926

I know, many times before we have heard of this option of an upcoming cure.. but with 2 drugs that are already on the market and currently offered to cancer patients, this is interesting... even if only to put in the back pocket. I have NEVER heard a report that speculates a year out for a cure... have you??

Gratitude - by Jen Hilt

"Gratitude" - by Jen Hilt

"At least it's not cancer", I must have heard this phrase at least 3 times during the aftermath of my son's diagnosis. Hearing this as a response to Henry's new diagnosis fueled my confusion, anger and depression. I was supposed to be grateful he had diabetes instead of some other awful illness? Why did he have to have any medical condition?
Around the same time, while working as a nurse, I needed to give a teen living with cancer an injection. The patient was notably apprehensive so I said in hopes of offering reassurance that "my son had diabetes so in addition to all my years giving injections, I give them to him several times a day." I was surprised to receive a pitying look from the teen, "I will recover from this cancer but your son will always have diabetes."
This wasn't what I was expecting to hear. To be candid, until someone figures out how to jump start a failed organ function this is true. And this young person with cancer sounded grateful not to have diabetes. Gratitude springs up in the most surprising places.

World Diabetes Day. Diabetes Awareness!

So we woke at home this morning thankfully feeling good and the hospital visit behind us, and how fitting it was his first day back at school after his stay at childrens and it is diabetes awareness day! Jared asked, what does that mean... he was already aware of how diabetes feels...

I told him it is so others know how it could affect them to, and how rampant it is ....

I did not go into these details with him, but got these from another great blog
A few facts:
-Every 10 seconds a person dies from diabetes-related causes.
-Every 10 seconds two people develop diabetes.
-Over 250 million people live with diabetes worldwide. In 2025, this figure will reach 380 million.
-More than 200 children a day develop type 1 diabetes.
-In developing countries, close to 75,000 children live with diabetes in desperate circumstances.
-Type 1 diabetes is increasing fastest in pre-school children, at a rate of 5% each year.

I have really enjoyed wandering through others blogs today and watching the videos of thier diabetic kids talking about their experiences... it has been enlightening... thanks for sharing.

Like all other days since June 20, 2007, Diabetes has my attention today! ;) We are completely aware! Spread the word!

Home again, home again, jiggity jig...

What a day! we ended up at children's ER after wondering why i was wondering how sick I was going to let Jared get before taking him.. needless to say.. shortly after the last post we were off. (I reflected on my own question, of how long to wait... and found my own answer)

I was glad we made it when we did, the ER was quiet and Jared was borderline DKA.. what does that mean.. well, pretty much at the point whereby classification they call it DKA is by lab results, and his were below the specified amount, by 1 unit...so he was considered DK (minus the A) no acidosis .. thank goodness... that is a bridge we have not yet crossed.

So after 11 hours we are home, with thier deliberation of if we needed to overnight there or not.. we opted to come home and go back again tomorrow for more follow up labs...

The concensus was ???? you heard it.. ????!!!! ...they said, they have no reason to tell us why this happened that they know of, since he had no symptoms of why this occured, but from what they have been seeing of 'diabetic kids', this seems to come and go for a few weeks, once it begins :( I am hoping we are the exception... and will chalk this up to a bad diabetic day :( and be happy with no reason... the ??? question marks come in because he had elevated white blood cell counts which indicate the body trying to fight infection.. only there was no infection to be found today... so we will take that test again tomorrow and see what was up there... they are hoping the problem will present itself, i am hoping the problem will resolve itself. Their business, vs. my business! I hope we win ;)

They did mention if i had waited much longer we would have had DKA to deal with... so good thing we did not wait... I do have to say.. they mentioned why did i not check ketones earlier.. I have to be honest.. ,and not saying i am perfect and i am not going to beat myself up over this, but a kid with a weekly average of 148 BG was not indicating illness, did not lead me to feel the need to check... they mentioned that with abnormal lows, there is reason to check which did preceed the high before the ketones 3 days prior... albeit (or is it all be it?) I guess the bottom line, is to now add one more repetoire to the 'to do' list and do random ketones tests.. just because?!?!?

Bottom line: trust your mommy (or daddy) instincts... you know them best... and even if and when you question yourself... belive in yourself.

Tonight, Jared is playing and back to his normal self... strange...but glorious.. home again, home again.. jiggity jig :)

p.s they had 4 dr's check his cough.. they say it is a perfect age for boys to develop some sort of nervous tick... and for now... this is his.

The Ketones are not a band...

Woke up this morning.... (nope not the beginning of any hit song) but the anthem of a morning with ketones... not sure where they came from.... in fact Large ketones were, and are ...so.... left field...

We have been up since the wee hours and Jared has a bad tummy ache now. We are trying to treat them at home with consult of childrens hospital.. but this has not happened to us before except with the tummy flu...

the most interesting part of this, is the phone dr said well it sounds like his cough has developed him some ketones.. I told him we were told for the past 2 months that it is a habitual cough...
he suggested we get it checked out again by a different dr....

What and when do you go to the hospital for treatment? The ketones seem to be joined by vomiting now.... hummm...chicken or egg...??? ketones or flu???

interesting...

very interesting...

send us potent insulin wishes and no ketones dreams...

that feeling...

I have had a hard time today shaking 'that feeling' last night was one of those odd nights, when Jared ate something he often does, we know the carb count, we didn't do anything out of the extraordinary.. went to bed with a in range number... and when we checked him at 10:30.. he was 44! why? .. i know..., you know...., all us parents of diabetics and diabetics alike know..., there is no reason.. i rechecked the BG history, his carb history, and his bolus and basal history.. nothing again out of the ordinary...

we treated him and waited the 15 minutes... still needed more... but not too much.. don't want him waking up at 300~~ well... we waited 15 minutes more and barely in range... but on the rise we decided he was on an upward trend and it was safe for us all to go back to bed.. he woke at 65... again strange.. these strange days leave me with "that feeling" that unsettled feeling that no matter how hard we try to 'control' diabetes, it has its own agenda.

I am also still waiting on the celiac and vitamin D results from his last endo appt... and so i feel... unsettled. I was actually unable to really be alone and okay this am.. after dropping off the kids, i usually come home to do freelance work, or run errands, or have a whole list of things to do, or that i could do.. but today I chose (i think) to erase my mind... well, i could not think of one thing that i wanted or was supposed to do... Thank goodness my neighbor and good friend called and asked me if i wanted to join her for a bit and carpool to pick up our kids. I think that feeling was that i really needed a hug, and a friend...I was feeling down and needed a hug.. those nights suck and really make me appreciate that we catch the lows and so far have avoided the consesquences of not... but that low, made me feel 'low' and carried right to the morning... I think it was waking my little boy over and over to force him to drink in the night, from his slumber... to wake him from his peaceful dreams to poke him with a glucose test.. or his reality (yes, pun intended!)

.. thankfully the sun is shining, and I am feeling better now, .. and all is right again.

Anxiety? or a bad habit?

So my son has picked up a habit... no, no, he is way to young for smoking or drinnking... he has a nervous cough... he habitually clears his throat.. we have been told it is not physiological, but rather habitual.. and for now, I will belive them...
Has this happened to any of your diabetic kids or friends? or is this just a personal thing... I mean, sure a 6 year old with diabetes has more stress than the average 6 year old.. but still.. enough to perpetuate the constant clearing of a throat? OY! Playing at the park, swimming class, in the movies, at school.. most of the day...... not when he sleeps, but aside, most of the time..

any insight?

the only diabetic i grew up with had an eye tick... figured it was unrelated...and so i am hoping for my sons ... just a 'phase' I can deal with... but does it ever go away? (It has been almost 3 months now)

*Note : isn't it funny how we can reasonably calm others about these issues, but can't always seem to grasp it when it is so close to home ;)

Totally unrelated but needed to air...

So one of my best childhood friends tried to end her life.

She is 'barbie' .. no that is not her name, but to me, she is perfect. She is all the attributes inside and out of what barbie should be 'born with' (yes i know she is plastic... but she does have perfect breasts, a small waist, blonde hair and blue eyes with great lashes that never clump ;) ) and since the manufacturers of barbie intended for her to be a role model to little girls, you would like to think they intended for her to be smart, witty, charming, funny, caring, and a good friend. Well, again, my friend, is all these things.

Last time we spoke (a few weeks ago) she was mentioning that regardless of Diabetes, I was so lucky to have 2 of the most happy, charming and smart kids, and pretty lucky overall to have the life i have... I agreed. I was a bit jealous of her life too, still a bachelorette, and involved in a fun career, got to sleep in on weekends, and lie at the beach for hours if she should choose to...and smart enough to know she did not want to settle with the last long term man she was dating. ... In a heathy way, I envied her, she envied me....

I now know, (and it obviously was not in any direct relation to me..) but that she really was not happy in her life, and she was wanting something different... and instead of seeking it, her depression got the best of her and she chose to try to fall asleep with some sleep-aid and not wake ... I am feeling blessed that it did not work, that I have a chance to spend more time with her, and to enjoy her company, even if she is not currently happy. I know there is more for her still, and I want to be a better friend. When i got a hankering to call her at 1am and leave a message to say hi, and she actaully answered crying, i should have known... I was glad to be there that night, but that is not enough.. she needs someone there always ....now... and I hope to always be the best friend I can be...to my friends, my family and to me.

Thank goodness Halloween is only one day a year!

Well all is still and quiet... until the late pitter patter of foot steps through the house .. Jared woke to pee... we check his BG which has been great in fact for 3 days solid... so good in fact, that if i had a working printer, i would have printed the download and framed it... because it was not hard to maintain that freaky few days of diabetic perfection...well now we check him and he is ...... drum roll, a ghostly and ghouly.... halloweeny 483... now that may not be such a shocker had he eaten a whole bag of candy... but we hit 3 houses, one which was ours, and we gave out LPT (little plastic things) one was our neighbor and good freinds, who specially made my kids bags of chips and annie's fruit snacks with a few stickers, and one random house where no one was home, so the kids got a reese snack stick (i think it is called). MY kids chose to come home and do crafts in our warm house vs wandering around collecting candy...So in total, we offered him a dark chocolate bar(Which i chose the mini one with the lower carb count to offer him treat if he did not want to go trick or treating, because he is catching on that for a diabetic kid, this holiday can kinda be candy revolved, and would prefer to do crafts, and things he likes than wander around and collect candy which he knows he likely shouldn't eat for his and my reasons. So in total after dinner, there was the dark chocolate which we gave him 14g, chips 17g, and a reese stick which he begged for (15g ) "since all other kids he knew were eating far more than this and he would not ask again to eat his treats when this night was done" (he offered up that one). ... before bed ... 180 and now... 483

All i can say, is thank goodness halloween is only one day a year... talk about junk food pressure!

I hope you all had a wonderful and happy halloween :)

check up ...ahead...

Well the only appt our practitioner had available was/ is the day before halloween unless we wait until next year... which since this appt combines to get the flu shot.. and test for celiac.. we opted for the all inclusive day before halloween appt.

my hubby will likely be away, and bless my daughter for coming and watching all this go down.. she is a rooter tooter cheerleader for him (most of the time) only yesterday at his podiatrist appt when he had some scraping and freezing to be done.. (thanks to swimming lessons at the local public pool) she closed her eyes and ears and ears and started crying too (along with him after he was holding it all in... Did I mention they want to give her a flu shot along with him (and me) at the same time?!?!?

I am honestly going to say.. this is one appt I am not looking forward to in the least bit!

35 is the magic number to start the day...

To start the day off right, most anyone would say "consesus says have a healty breakfast" .. well deciding what the will be when put into the hands of a 6 year old (diabetic) always left us wondering what to bolus for pre-meal.. as we have been really trying hard to do to keep him more leveled with less ups and downs... so we finally found a magic number that works for many of his favorite quick easy and pretty healthy breakfasts. 35... so when we wake, we check and bolus.. and this gives him the great start to a day with all attempts to keep his numbers in check all day... and as long as we all move in sync to get breakfast on the table within a reasonable amount of time... everyone is happy :)

p.s We also find that this number instead of just the 13 (for milk) we used to do ensures he knows he must eat all his breakfast for a good start to the day... we try and see the bright side ;) and he manages well until snack or lunch at school.

Back on track...

Well, I have been lurking around on the blogs, and not doing much writing myself... I was kind of hoping all would be quiet on our front, and did not really have any updates, the strange Meter error 3 from Jareds PDM was on my mind, but chalked it up to user error, and dealt with the extreme waste of strips... I had an incling to put his sensor for his CGM on ... and well, for a pack of pokeman cards, he was willing... he always says when it is over, it did not hurt as much as he remembered, and we again remind him.. he always says that.. so this time, remember.. it does not hurt ;)

He was having a bunch of low alarms at night, which is not unheard of, and a big reason why we have a CGM... and I (as usual) double check the CGM data with the glucometer, built into his Omnipod...(Which we are a fan of) However.. the data varied way too much for comfort... his CGM said 66 and his meter said 179... an hour later I tested him again... and this time the CGM said 55 and the meter said 180... and within 3 minutes the CGM alarmed again with a rediculous 39! I was a bit paniced, and decided if he just had a glass of milk or OJ, we could all sleep.. and if he wakes at 300+ in the morning, I could deal with that... Sure enough he did... I called Omnipod and asked exactly what does Meter error 3 mean.... the answer ... get ready to be shocked... it means there is a glucometer error and you should not trust the data!!! Call me crazy... but I did not get that from Meter error 3!! I was upset, they tried to calm me down by letting me know that they would 'overnight' me a new one... well on a friday nite.. 'overnite' means monday... So we planned.. like all diabetic families we negotiated our way with a glucometer and remote for the pump, making a pod change happen so when the new one came on monday, jared would not have to have extra insertions when we the new remote came... this was hectic, but such is life with T1 kids... (fast forward) Monday 5pm, I call too Omnipod to track that little bugger remote down as the current pod is beeping for expiration... and well.... (show my sad, disappointed, pissed off face) they informed me, that the order was only placed that morning, meaning tues afternoon at best I would have it. Now not that this was a rant post.. but I informed them (And take into consideration that the folks at Omnipod are helpful and most of them are either diabetics themselves, or parents of diabetics kid(S) ... I reiterated to them, that we were not waiting for a new book, or music disk, or toy... but a life line... a reliable and expected machine to function as our kids pancreas... She tracked the package, called me back and said they would send a few extra pods to deal with the multiple changes that would have to be made to accomodate the delay... All this sucks... I love his omnipod, but that was making me mad... first the ambiguous 'meter error 3' then the ' overnite shipping' that took 4 days... but it all turned out happy in the end, our new PDM came, and Jared toughed it out ... quite frankly, other than having to drag around a remote, and a glucometer, and a CGM for triple protection... he dealt.

So here we are... trusting a new device again... and i do, i have to...after all, he does.

"tape it to your forehead!"

So we are having small issues with Jared forgetting his Omnipod remote (the control to his insulin pump) at school.. (wel technically the whole diabetes supply kit he needs daily). he is 6 and in 1st grade.. and is really self sufficient at school with his care... I think we all forget how little he is to remember all this stuff... he is thinking about homework, lunch bag, library books, sweater, school bag... (probably the silly thing the boy next to him is doing, how cute the girl looks in pigtails... - I don't know...) but he is clearly not thinking about bringing home his 'diabetes kit' which is currently housed in a camera case with a carbeaner to attach to the side of his pants or school bag (we removed the strap when the teacher said he really was not wearing it anyway)But now.. this is the (yes.. gasp here) since school started that he has forgotten it... the gasp was for the times we got all the way home, and he felt hungry but could not bolus for food with out the remote or checking his BG first...but the strange thing, is that the teacher and I both ask him.. (at our respective times - she when he is packing up, and me when he gets in the car - do you have your 'kit' we both get 'yes's) but no kit makes it home... I feel the pressure to move out of way of the long line up of cars to pick up their kids.. but this is becoming silly... I am considering taping it to his forehead - not really - but it sounds like an option at this point ;)

Any ideas of what works for your kids? are we putting too much stress on him to be self sufficient and manage his own supplies?? or is this just a passing rebellious stage.. he is also not wanting to wear his medicalert necklace.. he came home yesterday with the medic alert part in his kit, and a surf board hanging off his necklace ;P can you blame the kid?

These kids have to deal with so much... how can we make this smoother? I don't want to ask the teachers to do one more thing for him... but I am almost at the point, where I may need to ask them to help me help him be more accountable than with just a question... double checking can be hard in a class of 24!

Okay.. babbling on here... I think i need to put the shoulder strap back on and make the poor kid wear the cool camera case again... (just thinking out loud) we did not used to have a problem.. ahh lets blame it on the carabeaner.. and not the boy... after all -he is so darn cute and tries so hard...

I couldn't wait...

11:57pm... couldn't wait anymore... 67... well.. that solves that... a small sigh that we did not wait.. a half a glass of milk... and we can all rest a little easier...

good nite.. for now ;)

a tad supersticious...

11:11pm.. I am a bit supersticious still as an adult.. and when the digital clock shows all the same numbers, if I am in the right mind set.. I still..make a wish. Tonight.. I got to make an wish at 11:11pm just before i went to check Jareds BG. I knew what i wanted to wish for, but I am so careful with my wishes.. because like a child, i prefer to wish for what i know can come true... so my words in my wishes are so very carefully chosen... Of course we all know what the 'ultimate' wish is.. but how do we wish for it??? a cure? diabetes to just go away?? no complications?? easier life?? Less issues for him to deal with??? Less pressure for him?? I never know quite how to phrase it.. I am beginning to think it is a good thing I am indeed supersticious, because I have by now, likely worded this 'desire' in so many ways.. some part of it.. in fact 'any' part of it 'has' to come true... I can't complain because we have not had any extraordinary complications to date.. lows.. yes, highs.. yes.. ketones with the flu.. yes.. IV's and hospitals for what other kids miss only one day of school for.. yes.. but all in all.. we are so lucky he is responsible (as responsible as a 6 year old can be) and is in tune with his body.. and does not rebel too much... but I do wish for him to have the same 'normal' as other kids...

I checked his BG and he is 87... good.. right?!? normal.. right?? only not for a kid with no pancreas who you never know what is going to happen when they sleep... too much insulin can cause a parents worst nightmare.. well.. 3 more hours to check to make sure we will all have a good nights sleep... you never know which direction it will go in... nights like tonight you wish for the CGM.. that personal safeguard... the one that will let you know 'before' (in theory - and usually) trouble comes his way... but he does not have a sensor on.. so I don't anticipate much sleep tonight.. I am already rambling... Clearly there is much more and way too much on my mind... the guilt of halloween coming up.. .i don't know.. hating hearing my son say. "I like healthy things and I know it makes me feel the best, but I wish i could belive it ...when someone says.. you can have anything.. they meant it - I know I can't ... and don 't know if i ever will" and then he moves on.. that is way too deep for a kid.. acknowledging that a small fraction of his life sucks, he deals.. it is not fair... but I wish for him.. one day.. he could have 'anything' he wanted...

note: the problem here is that even if you try to let him have a small binge fest.. he doesn't feel good.. what is the fun in that anyway... (Hey you got to let them live and learn a bit.. and as most of you know, it does not take much for a small kid to feel the effects... of it all... and I mean "it all"

On Halloween we trade the 'loot' for a 'gift' from the great pumpkin of halloween who has a sweet tooth... but I still feel a bit guilty (not that he needs the candy) but that the whole 'ritual' of it all does not have the same satisfaction to him as it used to.. :(

Sorry to have jumped all over the place, I just felt a need to ramble tonight... I am thankful for so much, and so happy and proud of him, I wish I could make it all better... I would take a day.. anything... for him to feel he is 'normal' because I know he is... and I know what wonderful things he will do and accomplish regarless... just an easy day... would be a really nice 'treat'

the sirens of occlusion...

I should have had a clue after a wonky BG day in school... one that had the teachers baffled and on the phone... but as most of you know, BG's that vary tremendously really can indicated many things, or nothing at all ...

he was 57 before lunch and HIGH at the end of the day... although an hour later he was back to 140... so what was up.... the teachers parting words were... have a good nite, I feel for you.. I remember not sleeping... and from the sounds of it.. tonight might be one of those nights...

Foreshadowing.. for sure!

he went to bed... in range.. with tons of insulin on board, due to a pasta dinner and a hungry growing boy.. and so I kept checking him every hour, because i am trying the 'pasta night' extended bolus for 8 hours... well... his BG was 340 at 10:45 so i knew bedtime was not in sight for a while... Midnite.. HIGH... hummm... forced a bolus to correct... (actually hubby did it... after a day like that.. i needed some respite from the chaos..) and about 2 minutes after his walk back... the siren went off.... HUH .. you ask.. SIREN??? Jareds pod sirens when it goes into auto shut off... occlusion :( he comes running in scared... and i knew what had to happen... my hubby on the other hand has not heard the occlusion siren before... so it is quite new .. and intimidating... so 12:30 here we are changing the pod of a cute and very sleepy boy... He was a trooper... we let him sleep in our bed, and brought his sister in too.. it was one of those nites... closer is better.. might mean a bit more sleep

He woke up and went into his room.. dad had left some lego for him... he got all excited and was not expecting it.. I told him the pod fairy must have told dad to leave it out for the bravest boy.. (note: not that pod changes dont 'hurt' per say... but at midnite.. no one needs that S**T!

Funny story: The first time I heard the siren my brother and dad were in town... the lot of us searched the house when we heard it.. including Jared.. looking for what toy or appliance was making the high pitch squeel... it turned out then to be my boy.. well his pod anyway... so we learned... hear an electronic noise.. check the boy!(pod)

Off to school.. hoping the new pod will bring peace and quiet for Jared and his teacher ;)

Proud of her for speaking out...

A true hero of a mom, a person, and a spokesperson for all our children.... I love her...and I cried...when i saw the commercial..it caught me by surprise.

Her son has been a mentor and friend to our son...She has been a support and a role model to me!

what a great family!

http://www.youtube.com/watch?v=1rSITfYSxa8&feature=user

Post the origional post, I come back to this post of mine, not really realizing how contriversial it is.. nothing in politics ever is... but as parents of diabetic kids, and me knowing this woman and getting the call from her October of last year that her son had a seizure in the night... is why i tear up, because she is a hero for speaking out, no matter the forum.. I know in my heart, she did it not to help the politician first and formost but to help her child and all of ours... to raise a voice no matter the forum... to raise awareness of what a diabetic child endures - period. There is no pretending that everything 'can be normal'... it isn't and until resolution... it won't be.

This is NOT just a dramatic commercial.. this is real, this IS our lives, this is a truth ... not for the politician but for diabetics... seeing this commercial was like my first time saying out loud in a group forum that my son was diabetic.. it makes it real, the world does NOT know what it is like to live with a diabetic child... never mind the prospect of a cure, but dealing with today.. even more granular.. dealing with each moment!

Today I have decided that if I can ever have a moment to help others, and mostly families of diabetics like ours, I will... We cannot hide in the shadows of ignorance.... Our children have a different 'normal' they deal with more S**T than most adults can handle ... They are heros who deal with so much each day...

do you say YAY when you meet another diabetic kid? Is that twisted?

We (maybe just me, but I am sure Jared feels the same way) have felt rather alone.. since we have not met any other diabetics in the immediate area... a few at SKWIDDs meetings of course, but none at his schools, the playgrounds near us... but today was different...

After school we went to the pool, went in at 160 BG and then jared hopped out after 30 minutes.. tested when he said he was tired and hungry.. and was 54... I was happy he recognized that... that would have been real trouble...so he had 16g (fruit leather) and we waited and re-tested... 51!??!? kind of getting nervous.. had him have 16g more and waited and retested... he was only back at 54.. zoiks@!!! I went for the glucose tablets in his emergency kit... but asked the lifeguard if he had some juice... a woman and her son appeared with a juice box and said they noticed the glucose tablets... and her son was diabetic too... He drank the juice and was fine... and hopped back in the pool only to have his pod get knocked off by his sister after almost an hour in the pool... he was still only 125... after all that... it seemed to work out. and he got to be free for a while.. and it was pod change night anyway ;)

But the with the happy ending for Jared was a happy ending for me.. i swapped numbers with the other mom, and we will get the boys together (they are the same age) and I hope this is good... Jared always was asking why he is the only one around who got diabetes... if so many people have it .. why doesn't anyone else in the family or anyone else he meets...

We assure him he is not alone, but always wondered where the other 1 in 400 kids were... we found one... and I hope she calls to get together... if not for the kids, for me too... it is a open conversation with someone who understands... and she has been there.. her son was diagnosed at 2.5.. so she has really been there... and perhaps she will get something from me... if not just a good friendship

Ying and Yang... brain dump...

Go figure.. we had a great camping weekend, with numbers in range or low due to constant activity and beachcombing ;) ... a sad boy to come home, he has decided he wants to camp all week and next weekend until school starts! We arrive home (after a 2 hour drive - which took a bit longer than that) and a necessary pod change which has to happen to a strategic pod dislodge ;) on his part ...and an amazing first 'arm as a site' for the pod (he usually uses the belly) but the dr said that he is getting contact dermatitis from the tape and his belly desperately needs a break! he was great.. like a rockstar.. stating ' that hurt less than the belly ' which made us all feel good... and then chaos!!!!! 380 after his bath (Which is opposite of what it usually is - he tends to go lower in warm water) and then a high reading until midnite... multiple boluses before bed... checking every 2 - 3 hours all night with CGM readings and alarms of HIGH all nite... and then waking at 7:45 finally still at 240... no ketones amazingly... and then a nice reading of 120 before breakfast...just before 9am. (hey, i have learned to take any inrange number no matter what the time is... )

So riddle me this.... can emotions? change of site location? change of environment? change things that much... ???

before bed tonight he is reading high again... lets hope it is growth hormones, pre first grade anxiety... or something temporary.... i am too exhausted for another night of constant boluses...

p.s the doctor has us on the 'watch' for celiac sympotms as Jared is a frequent pooper.. and gets tummy aches before each one.. did i mention that frequent can be 4-5 times a day.. or after each meal?!?!? Is that common.. happpen to your kids? with our without celiac? We have a blood draw at the next visit to tell for certain... but I was wondering what is your experience with 'movements' and your kids.. and tummy aches.

thanks again for being out there :)

A great check up...

Well.. as usual 3 + months has come and gone and it was time for the endo again... We got a call from Childrens hospital clinic stating that Jared has not seen a social worker since his second appt post-diagnosis and they would like to try again.. could we come a bit early for an additional appt. Of course... he had not spoken a word to them when they tried at the previous appts... this time he talked.. he chatted away quite frankly... for 45 minutes.. everything from diabetes to lego... he has come a long way...

But the best news came in in the form of a sticky note attached stuck to her notepad... it said 6.4! I knew what that meant and was ready to boot her out the door to hear from the endo to follow to confirm that that 6.4 was in fact Jareds.

I am pleased to say.. indeed.. it is Jareds... she seemed as thrilled as I was.. and said he could be a poster child for diabetes.. perfect control and according to the CGM read outs spends 80 % of his time in range.. which is like that of a non diabetic.. and yes, i am an optimist, for a moment, although i know it is not the truth... maybe he isn't diabetic.. okay it was a thought in passing, it comes and goes, some realists call it denial.. but a mom can dream, can't she?!?!? (Note to readers: during the months past, and days.. which included an ER trip with ketones and stomach flu..vomiting at the er, and occlusions and pods that did not work... it all still turned out okay - while it is happening it all seems like the number will be high, that the total control is not there, and that the above fasting glucose numbers in the morning were a sign that a good A1c could not possible be....)

he is growing on his curve and gaining weight on his curve... and we could not be prouder of him.. he is the hero, the rockstar and the one who puts up with the 'rules' of the game.. and mostly he makes the right choice. sometimes with a grain of salt, and a few disappointed sighs... but he is a good kid, who is really doing an amazing job! No matter how much we act like a pancreas for our children, it is up to them to deal with it... and today, i am the proudest mom I can be!

I am not sure it is the A1c's that make me so proud, but more the confirmation that all the challenges he faces are worth it... and that they are going to in the long run pay off...

"Something is not right"

Have you seen the remake of Madeline the kids movie??? Well the nun wakes and says with a finger to the air "something is not right".. Last nite at 2:30 am.. I woke.. something was not right! I was not sure what.. I was exhausted enough to for a moment try and tell myself after i tried to go to the bathroom, that i should just go back to bed... but i did not have to go to the bathroom, nor could i go back to bed.. something was not right.. I woke a bit more from my mid night stuper.. and decided to check on Jared, whose CGM was beside him, but the little monkey had turned down the alarm for night to 50! OY, well it said 56 when i went in... that was the pager to my brain that night.. not a direct line.. a little luck but a definate feeling to wake and disturb me... While i checked his BG, it vibrated and woke him... he jumped to read it... and said, how did you get here so fast... I treated him and waited... 10 minutes later (Which is quick i know.. i usually wait 15 but I was tired...) he was only 61... at this second round of waking, he was up too... he asked me how i knew.. i told him the story of Madeline and how 'something was not right'.. he giggled and said he loved me and was so happy I had 'that feeling'....and now he wanted to go back to sleep, knowing he was safe...

What an amazing feeling to have your little one feel (Even if for a moment) safe enough to express it... and to fall back asleep :)

Cheers to all Pancreas Parents.. .we are not alone

http://www.youtube.com/watch?v=xlhfrNmk5os&feature=related

In the wee hours we are awake, checking, and making sure our little ones are safe...

We love our children so much!

Kudos to this girls video...

It was a laugh for us to watch this... enjoy

http://www.youtube.com/watch?v=_5AVRRRwX_E

Always good for Jared to feel normal... and seeing other kids with the likely similar feelings make his feelings validated, even if I have never felt them before.... other kids seem to really be able to express it well. Way to go Katie!

Some random rants and raves...

Rave 1: So have to say that Jared is really enjoying his Jonas Brothers CD (trust me under any other circumstance... I would be gagging as my child embarks on a teen dream singing group love, but this time, for this reason, I am okay and totally supportive and a fan of the song myself ;) The son 'a little bit longer' is on repeat in our car, and he loves it and he and his little sister rock out to it, and he is really listening and picking up on the lyrics quicly. (Refresh for those who are not familiar with this song: it is a song written about diagnosis day for Nick Jonas the youngest Jonas brother who has type1 diabetes and currently wears on omnipod pumping system).

Rave 2: The Cooking is fun 'for diabetic kids' Cookbook is better than expected.. we made the mini pumpkin raisin muffins (2 for 12 carbs) and used some great organic ingredients all of which we had in the house, and they turned out great... fantastic actually! we stuck some candles in some for our neighbors birthday and they really enjoyed them too. A big hit, can't wait to try out some more recipies! The other interesting thing is that Jareds BG's were accurately accounted for ironically that night, and woke up in the best range possible so far (okay well a little low, but we take a reasonable low as a morning number as it happens to non diabetics too. Was it the truly thought out diabetic recipe? Humm.. will have to try some more to see just how well this whole 'eating as a diabetic' rather than just eating healthy balanced portions thing goes... to be continued.. and updated...

Rant1: and this is a BIG one!!! CGM denial letter came today from my insurance company.. although when i call on the phone they say different.. I have to say getting that letter sucked big time and made me pissed at a company who so far has been really understanding of our son's medical needs and worked with us really since diagnosis with him to get him the best supplies we can find to make him the most comfortable... I will appeal again and get on Dexcom's back too.. insurance said Dexcom has not provided what they need for proper verification of medical necessity and breakdown of costs.... since they are both playing with our money.. i think they are taking their own sweet time.. really.. if that $800 bucks was out of either of thier pockets.. you best belive they would be moving faster.

We are going to put a sensor on Jared again as AIC time is coming up and we like to have as much data for the Endo team as possible when we visit.. especially since we did last time (may 9th to be exact) and they were able to make such a difference to Jared and really reduce his headaches and yoyo BG's and my night waking rountine has become limited to 1pm as last check in and only as intuition thereafter forces ;) Most of you know what I am talking about...

And this one is running as just a thought.. not a rant or a rave.. but school is coming up and teacher training time for Jared is just weeks away... Gotta get prepared and get all the supplies and my 'lesson plan' for showing the teachers how this disease will affect Jared in thier classroom and lunch time and what to look for... and treatment plans... Good thinh Jared is becoming really self proficient at this point.. Makes me proud.. although it is scary to have a fresh 6 year old counting his own carbs and bolusing himself based on them... Hopefully he and his teacher will form a good relay team for this information and it will all work out.

Well that wraps it up.. of to do the midnite check and catch some zzzz's.

Just when you need it...

We made it thought the birthday madness which in our house involves both my (now) 4 and 6 year olds. born 2 years and one day apart! Things were getting back to normal only a few days after the family is gone and the sun is out, swimming classes are back on.. rooms to clean.. etc, etc.. and for Jared.. Pods to change. They don't hurt him, and they save him a whole lot of hassle with needles 10 times a day, but today was again.. one fo those days when he was mad.. and DONE and wanted his diabetes to go away. It was just yesterday when he asked.. why am I the only one in the family with Diabetes!?!? Which i answered with a question : would you want anyone else in the family to have diabetes too? and he thought for a second and said, no.. I guess you are right.. And that ended that... but I wondered.. does he feel alone? does he know we do our best for him and for his care, that just last night we needed to double team his limp sleeping body and wake him from his deep sleep to give him milk to cover his low!??! That we urge him to test often for his own good and bolus early to feel the best he can so he CAN feel normal after a meal ... Secretly, although he won't admit it when he is on his diabetic frusterated path... I am sure he does. We found his Better is Better book under his bed which illustrates (litteraly) how many pokes he is saved by using a pump and how much better his life is today and will be tomorrow by using it, that the frusterations of pod changes .. which helped too... but with all luck in the post, today arrived our very own Jonas Brothers song A little bit longer... the song Nick wrote about his feelings about being diagnosed with Diabetes.. and Jared asked if we could put it in the car and park at the mailbox and listen to it all... Also in this package was a cookbook for diabetic kids called cooking up fun. What perfect timing. All is peaceful and the kids are happy and Jared is feeling great!... Until the next time... "A little bit longer.. and I'll be fine :)"

Not sick, just diabetic...

One of our friends asked us what was on the schedule for today... I responded with the usual list of; park, pharmacy to pick up prescriptions.. etc, etc... My son chimed in with ," We are getting a prescription because I have diabetes, not because I am sick.. just so you know..." I think he is really wanting to be as normal as possible... Is there balance for a diabetic who is in control and one who is 'living life'.. like a responsible non-diabetic?

Diabetes is 24/7 .. .it sounds extreme or to some... even somewhat of a dramatic "feeling sorry for your self" because "Cancer would be so much worse" or having "other problems on top of having diabetes"...would be horrible too. Are we looking to make things worse? NO, the thing is.. is that if you pretend with Diabetes you are not diabetic, you get sick.. so you go from diseased and dealing with it, to a sick diabetic in jeapordy of a coma!

I read a post today of a mother who has a daughter here in the area and that a 6th grader in her daughters school is in the hospital with a diabetic coma - 1 year post diagnosis... that scared the crap (*pardon the expression) out of me... if it could happen to her, it could happen to anyone.. another story of a child dying from strep throat due to diabetic complications... these are real.. and pretending they are not only gets you into trouble... doesn't it??

How can we as parents not stress or stop checking for a second when the reprocussions are unthinkable.

How do you deal with constantly worrying for your child? have you found a coping way to deal with the stresses without bottling them? I guess for now; I have blogging.

Done, done and done...

Tonight my little guy declared to my hubby that he is "done" he is tired of diabetes and he does not want to check himself anymore, he usually is good about all this, he does it, he understands, he deals as best he can. Not tonight, it seemed to be brewing as his reply to a simple, time to check your BG has been replied to with "you don't need me to, you want me to"... something was brewing...

I think this is all starting to sink in to him a year post diagnosis (just a few weeks ago) that for now, it is not going away... that his 6th birthday is coming up in less than 2 weeks and he, yet again, has to "waste" a wish on something he thinks cannot come true for him on his birthday. he should not have to wish for a cure - every wish he makes - , he too, like all other kids should get petty wishes of Lego, Pokemon, trucks, rescue heros and everything fun... but he still wishes for his diabetes to go away. He is done.

How do we overcome this? does this go away before a cure? Do we change our polite answer to others of "how is it going for him?" to "it sucks?!!!??!" instead of, he is doing great??

I want to make all his wishes come true, but this one, for now, I can't!

how can you give a child back his childhood? how can you make him believe once again wishes come true? How can y0u make them forget for one second about the disease and remember the little things?

Perhaps I can get his CGM back on him, he is tired of carrying around that too... lots of 'stuff' for a little guy to deal with... too much 'stuff' .... There has got to be a way...

How do you deal with this? Tomorrow is a new day, perhaps he will feel better when he wakes... and us too...

Being away and getting organized...

Well we have been away quite a bit this summer visiting family... and being away from home often presents BG issues in itself, so being prepared is really critical to the whole experience to make sure that Jared my D son is best equipt and prepared for being away and staying as 'regulated' as possible with of course some flexibility.

I found that carrying around the whole "tackle box" of supplies (he called his cowboy kit) worked when he was on injections as there were so many supplies to bring it was necessary to bring tons of extra supplies because you never know exactly how many of each were necessary... so consider the fishing tackle box as a supply kit for your injecting needs...

Now that he is on the Omnipod or Pump (for all intents and descriptive purposes) we use a plastic 3 drawer system (As seen on the diabetic mom song YouTube video in a previous post)

Top drawer is extra supplies for testing (Strips, lancets, ketostix and alcohol wipes).

Next is supplies for pod changes - (including the polysporin/neosporin (Depending which country you live in) for the site puncture to help the healing which we have found to be a great discovery, SKin prep wipes, which also were a great discovery to help the pods stay on with less irritation on removal so worth the 'non coverage' expenditure, and sets/pods ofcourse)

The last drawer is for lows supplies (lots of fruit leathers, sharkies (organic, no high-fructose-cornsyrup energy chews for kids and other such treatments for lows) (*oh exciting when visiting canada we found a new fruit snack option - all natural made by sunrype called fun bites - find 'em if you can - they are 16g of carbs and all fruit )

So we sound prepared... we feel prepared... but the whole 'regular' part of the equation is still yet to be figured out, but you know what?!? we do our best.. we treat the highs and lows and we move forward, and are thankful for every day we spend visiting family and friends :)

Night time basal rate change.. the 2 hour waiting game...

Well, tonight is one of those nights.... the fist night after the changing of a night time basal rate... and it is 11:40pm and my son is 97 with .20 units on board.... seems simple.. kiss him goodnite and off to bed... well not quite..

I have an obsession.. as do many other pancreas parents... to protect my son from night time lows when possible... and well... this is a number that may be heading that way.. but not worth waking him up for a nite cap of milk... so I wait. My waiting game, gives me about 2 hours of ... well waiting, and wasting time. I suppose I should be enjoying this time, it is mine after all.. the house is quiet, everyone is asleep... but me... waiting, I am waiting. Before May 9th of this year, and since my son's diagnosis a year ago, I waited every nite... but then I waited for three hours, every three hours, and as I mentioned in an earlier post, the great endo nurse changed the ratios and now the pod/pump is doing more of the work than me... but when we make a change.. tonight it being a combo of a basal rate range, and a Correction factor change, and a really active late evening in the yard with friends and neighbors... I wait. Again.

I hope that those growth hormones that on any other nite, keep me up to bolus him, kick in and keep him hovering in the 'safe' zone.. because of ALL nites, earlier today, I took off his CGM and gave him the day off. For those who don't have one, or are not too familiar... it will vibrate to wake him and if that does not work, it will beep to wake me.. at a high or low out of range. Talk about piece of mind... well tonight, this mind.. has not much peace!

All I think about is imagining what is going on in that little body of his, and how will I one day figure it all out to pass the torch on to him, so he can sleep, with piece of mind, and not worry... and respond to his own needs in the nite.

So, as I wait... I write, and I wish you all a peaceful sleep tonight, and a bright sunny day tomorrow, with no night wakings, and sweet dreams (but not too sweet - we don't want to wake with a high ;) (cheesy I know, but seriously, who thought of that... 'sweet dreams'!?!? well tonight, as my precious son sleeps I wish him sweet dreams of about 6 carbs to keep him safe, and dreaming of a sunny day tomorrow.)

A Loop hole in getting a CGM approved!!! Try it :)

Well, I really am thankful to have good insurance that has covered , my son's supplies to date. They don't always right off the bat, but they do eventually.

I had a little help from a few key people before submitting my claim for my son's Dexcom CGM.. Here is the important key points to remember:

CGM's are new and may have caps (Such as $80 for users life in reimbursement) but as diabetics we have more of an unlimited resource for "Durable Medical Equipment (DME)" (Specifically over $399) (This is what I learned from the fine print) Sowwhen you file= remember= APPLY FOR COVERAGE WITH COOPERATION FROM YOUR ENDO FOR COVERAGE FOR YOUR DME (They will know the CODE for this) and the sensors should be claimed under the same diabetic injectables supplies that your pump sets or needles would be covered under.

Work as a team, and I know that Dexcom will work with you to get the approval.. we are still waiting, but have not had denials so far, and are waiting to get approval. We filed for reimbursement in May of this year... They have 45 days supposedly... but we have our fingers crossed, and I hope that the "check is in the mail!" so to speak! :)

If you need further info or specific codes because you don't have a saavy provider, please comment or email me, and I would be happy to provide these, I just don' have them on hand as I blog tonight :)

The CGM has been amazing for awareness for us all, and really has helped with allowing us to see trends most importantly...knowing that he is going up or down from even a great number, helps us to 'keep him in range' with foresight and insight.. rather than constantly reacting and having him bounce up and down like a ball in a box!

Good luck - and may the force be with you!

Your blog is like chicken soup for the soul!

I have to give kudo's to those other bloggers who I don't personally know, but that I feel really connected to. I love reading about your morning scenario.. about your daily routine, about the 'things' that happen during your daily (And nightly) lives and how diabetes entwines itself into it. We have the same morning scenarios, same big questions, same feelings and emotions.

I love your writing, and your antecdotes.. and truly sometimes your posts help me to explain things to my loved ones and friends - things I could not articulate myself.

Thank you, and keep on blogging :) I love every word of it :)

The paradox of cause and effect.

Found some more interesting facts about household things that can cause illness and wanted to share them:

Germs (This one we know.. but the detergent was the new shocker for me)

Which room of the house harbours more germs, the bathroom or the kitchen?
If you answered the bathroom, you will be surprised to know that the kitchen harbors a lot more germs then the toilet seat.

According to a program on CNN broadcase in March 5, 1996, Carlos Enriquez , a scientist at the University of Arizona in Tucson lab tested sponges and dishrags from 1,000 kitchens in five major American cities. Some sponges carried salmonella bacteria, e. coli, campylobacter, clostridium perfringens and staphylococcus and other ill-causing bacteria.Not only that , but some bacteria growth is caused by the detergents that are used in washing dishes…. What a paradox….

Read more about this here: edition.cnn.com/TECH/tomorrow_today/9603/sponges/index.html.
If this article didn’t get your attention, consider the fact that one single bacteria cell can become more than 8 million cells in less than 24 hours! http://www.webmd.com/solutions/stop_cold_germs/kitchen-cleanliness.

Are your beauty products killing you?

This is the title of the article you find here: www.alternet.org/story/13530/.This article examines phthalates which are plasticizers and have always been considered safe according to product safety standards. But are they so safe?Phthalates have now been recognized as toxic substances under environmental law, but companies are free to use unlimited amounts in cosmetics.Read more in the article above.

Certified organic bodycare products

What is the difference between simple “Organic” and “Certified organic”?
CERTIFIED organic products contain no synthetic chemicals at any stage of the production chain, beginning with growing, harvesting, storage, transporting and processing, through to the final ready-for-market product. Where there is an ingredient that is essential for the product to function, (e.g. xanthan gum to thicken) and that ingredient is not yet available as organically grown, then, up to a maximum of 5% of non-organic ingredients may be used in the product, and only until that ingredient becomes available and organically grown.

Organic products are not the same. The organic chemistry definition of organic, is any compound containing carbon. Carbon is found in anything that has ever lived. So, by using this definition of organic, many manufacturers can (and do) say that the toxic petrochemical preservative, methyl paraben, is "organic" because it was formed by leaves that rotted over thousands of years to become the crude oil used to make this toxic preservative.

All of this is something to add more knowledge to our base.. not to scare, but just for our back pocket so to speak. Hope you found this interesting. I did. You hear people talking about what to avoid, but they don't always have facts or reasons why... If you have other items you avoid, please share them with us. I know I always have an open ear and an open mind.

Just can't shake the feeling...

Ever have one of those nights... regardless of if you are watching a comedy or a chick flick.. you still can't shake the feeling of your child having to deal with Diabetes everyday. Today.. not a holiday from Diabetes... Another day... dealing with stresses kids should not have to deal with.

I panic, I hide it well, but I panic. I kiss him and love him (my daughter as well of course) and I worry about both of them, like all parents do. But I would trade almost anything for the Diabetes to just go away...

There have been days when it acted as though he was non-diabetic for a few hours, and I wished it was like a flu that goes away in time... It has wreaked enough havoc on our family .. it is time for it to be gone. Leaving a healthy, vibrant and energetic boy.. who gets to be a boy.

I am feeling like today's post is more of a diary entry than a post, so hang tight with me as I peel my layers before you all. I just need to get it out sometimes.

He is sleeping and put the CGM monitor on him tonight. I always feel like the bad guy, when I have to put 'more stuff' on his little body.. and tonight he let me know I was the bad guy.

Another diabetic mom once told me.. (and thank Gosh for her, or I would take it even harder than I do ... They (your Diabetic Child) will say things and feel things that are not fair to them or you, it hurts, Like heck, but don't take it personally... the moment passes, and life is filled with so many moments.. let that one pass too... with a grain of salt, and an unconditional loving hug, that no matter how hard it seems to get.. you all will make it through!

How do you cope with making life as 'fair' as possible? How do you treat all the children in your life Diabetic or not equally? How do you remind those around you that they need to treat all your kids equally...

Life is not fair sometimes, but I still wish, and hope and strongly belive, that one day soon.. it will be. I don't know how or when... but please ... let it be soon!!

A wish... or self driven solution??? He figures he has it all figured out

My son's birthday is coming up soon and well, in preperation, every chance to make a wish.. he does. For the past year, as many other parents of diabetics know, that 'not having diabetes' is likely one of the 'most requested' wishes of the year. (much like the top 10 christmas gift list). Jared thinks he has figured in his own mind, regardless of how many times we tell him to never lose hope and keep believing and that he can even be a part of the solution with dedication... However he figures that since that wish is not likely to come true (atleast for this year) since everyone else with diabetes has had it thier whole life and has not really heard of it going 'away' for anyone he has decided that he can outsmart the wish process... something more likely to get... a round about way of not having type 1 diabetes. Jared's new wish is for type 2 diabetes. Yup, you heard it right, my son is hoping for the disease of choice in comparison. I ask him why. He states "Mom, if I had type 2, I would just keep taking care of myself and eating right... and exercising and I could cure myself." There you have it, a 5 3/4 year old kid, figuring out a way to cure his own diabetes... downgrade! In his mind.. Upgrading!

I only hope all his hopes, wishes and dreams come true, today, tomorrow and forever.

I just have to add my own personal touch on this post: Last year I took Jared and his sister to Disney on Ice shortly after his diagnosis, and as I watched all the children overindulging in sweets, treats and even expensive souveniers.. I thought to myself, I hope each one of those childred appreciate what they have, and what they are given... And know that they are lucky for each and everything and every functioning part they have... and the MC shortly says in the magic of the "wishes' theme of the show for all the kids to make a wish... You know that all the kids with their mouths full, and their arms full of goodies likely wished for more of the same, and you know that all the sick kids or diabetic kids in the audience are wishing for cures, and health! Somethings just don't seem fair.

Don't you think that parents should not take pancreas, health and the magic of their childs life for granted and feed them crap, for one day it could all be taken away, or do you allow for those endulgences so that if it should happen that way... they have had a taste of it?

What are your thoughts? Am I just too emotional about the diabetes?

Request for CGM's: Denied by Insurance

I, along with many others are sick of being denied coverage for the CGMS. Join me on July 1 to raise our voices as a community.

If you have been denied coverage for the CGMS by your insurance company, Please make a post on your blog, personal website and or a video post wherever you are a community member on JULY 1, 2008 telling everyone how important the CGMS is for you to keep healthy.

HERE’S WHAT YOU DO:
In the subject line of ALL your posts please put:
REQUEST FOR CGMS: DENIED BY INSURANCE

This way we will have a way to keep track of everyone’s posts, and make our voices heard.

I have been doing research and have figured a few loop holes during my battle .. I will post on these soon!

Family support makes all the difference...I hope you have support too..

Tonight my husband told me to check out my mother in laws blog ... what a surprise, but I wanted to share it... here is the link as she has other valuable articles of course... but here is the link and the article about diabetes, a whole family diagnosis :

But also a 'thank you' to our family... for being such a great support.. with out all of you ... who knows if we could even sail this ship!


Diabetes-a whole family diagnosis
It’s been said that it’s not just a child who gets diabetes, it becomes a whole family diagnosis and as a grandparent we had to deal with the same emotions and educate ourselves quickly with the whole diabetic process. We learned to deal with our emotions from anger, frustration to acceptance in knowing that for now this is his life so we provide him with all the love and support to helping him maintain good blood sugars.Some days are emotional rollercoaster’s where my husband and I cry, laugh and hug each other and feel helpless in watching our children go through the “diabetic ride”.

Emotions for not only our grandson but for our son and daughter in law who face challenges everyday with their precious son. Equally important is the sister who is not a diabetic and making sure that she is emotionally looked after as well. Then there are the other grandchildren who need to be educated about diabetes and helping them understand what is happening to their cousin and how they can all help each other. We are all very much in each other’s lives and diabetes is part of our family, for now… we pray and just believe that the cure is coming soon….Educating ourselves with diabetes gave us the tools to provide the best care requirements for our grandson and understanding that this education has to be ongoing. Just as things can change quickly, what worked yesterday may not work tomorrow. We were taught how to do the testing, injections, about low sugar reactions and what to do if one occurs.We learned that at meal times it is important that he eat a consistent amount of food at each meal and snacks which all should be on a schedule. Since there are 3 other grandchildren all with different eating preferences this was easy to do, the only difference being we now count carbs and measure everything, this is leading to us all trying for healthier eating.

As grandparents we want to reward our grandchildren with special treats, often “goodies.” We have learned that special treats can be in the form of games, toys and family trips. One treat that all our grandchildren love are backrubs, we call them “bunnyrabbits”. This is quality bonding time that I can spend alone with my grandchild. talking to them, find out what they are feeling, what happened that day etc. Often sharing some of this information with their parents will give us a clue as to what could be going on inside their little body. It is all about trying different methods that could work and sharing this information with the family.

Our diabetic grandchild needs our love and support as he adjusts to having diabetes. He continues to be very active with his friends and family (diabetic or not) just as he was before his diagnosis. This has encouraged us as a family to become more active as well.As a family we all strive to treat each other with respect and normalcy.It is all about changing our mindset to make better choices for all our grandchildren.We are so proud of our son and daughter in law, they have been the keystone to helping the whole family come together and become an even stronger family unit.
Please check out the invaluable blog that my daughter in law has for her diabetic experiences, she would love to share them with you and hear from you.She is not a doctor but a wonderful intuitive person who makes our diabetic grandson’s life so much richer with her insight.Check out her site; working together in sharing information will benefit not only the diabetic child but the whole family unit.

Love and hope to every diabetic child and their families
Posted by frances bergen at 10:28 AM

Lets 'Conquor' Diabetes...

So I am reading the book Cheating Destiny (you can see the cover and buy a copy at any bookstore, or from the link above or on the left) and it talks about this concept.. of Conquoring diabetes rather than always trying to cure it. It was a startling moment for me.. profound.. but I needed to read further to really understand why he was saying what he was saying, and it totally makes sense. After all these years of promising our children a cure, it is seeming lofty. Trials and unfortunate lack of success in reversing the attacked pancreas has gotten many generations down about the prospect. Not to say there have not been highs, or that we should give up hope. but two things:
1. What if we could prevent diabetes from occuring all together? Stop the epedemic and conquor what is attacking the pancreas to help prevent the onset of type 1 diabetes all together? ( Great side note and tip on prevention I got from someone elses blog: Omega 3 Might Help Prevent Type 1 Diabetes
This was reported in the Journal of the American Medical Association, so there's probably some validity to it.Researcher Jill Norris studied 1770 children who were at high risk for developing type 1 diabetes (because of genetic testing or because they had a close relatives with diabetes).From 1994-2006 she took surveys about their dietary intake and tested their blood for islet cell antibodies every year.The researchers discovered that the at-risk children who ate a lot of foods rich in omega-3 were 55 percent less likely to have pancreatic islet autoimmunity."This is the first study to show this," Norris said. "This is all omega-3 fatty acids, not just the kind that are found in fish. It is certainly not time to make any recommendations until we can see this in other populations," but added that it is a very promising result.I guess it's time to bring on the fish, flaxseed oil, walnuts and soybeans! Let's see if I can get my non-diabetic daughter to get more Omega-3 in her diet.

The next point is: 2. Talk about always replacing islets, but really and truly if the antibodies attacked it.. it is likely to attack again unless we find out why those buggers head for the pancreas!! So I am no researcher, but the cause is just as important as the cure.

I know it sounds harsh, because where does that leave our loved ones with type 1 today? well, I think knowing why the pancreas is attacked would really solve the whole conundrum since the pancreas has been proven by scientists (yay a women scientist in this case) to regenerate.. if we can stop the attack, perhaps our little ones pancreas can regenerate and reproduce islets! ahh a prospect almost as exciting as grandchildren ;) (okay bad analogy, but cute ;)

Thoughts?

Also, I hear talk from time to time of cure presentations to the ADA etc and then don't hear much after that.. how can we find out status of the quest for the cure.. or conquoring diabetes?!?!? Comment if you know please. Thanks.

Laugh, cried and wanted to share it..

So I really like the Youtube video of the mom's song to the classical Bach overture... but this one caused me to smile, but before long, I had tears and wow.. maybe I am just feeling emotional today, but thought it was worth sharing for sure.

http://www.youtube.com/watch?v=BDATgiMwRNA

Thanks to the mom who did this, great work!

My favorite line in the video which I may just start using is: "And if all your friends ate 1000 carbs, would you eat too???" LOL

Made me feel a little less lonely :) And a little more normal :) Cheers to Pancreas Parents everywhere!

Is ther a connection between Lead, Toxic Plastics, and Artificial chemicals to our children who have diabetes?

So shortly after the self blame game subsides, we look outwards, or atleast I did, I started to look at the environment and the world around us to see what could be contributing to this disease, what the common thread is that makes it an 'epidemic' espicially in the state I live in (WA)( I hear Norway is the second biggest hotspot)

I decided that I would make changes where I could. We were lucky that we already were quite 'healthy' eaters and had the whole grains and lower fat diet... but now, the house hold needed a 'scrub'.

I did my research online and through discussions with knowledgable sources and I compiled this list. ( I will also try and touch on the theories that have been pointed out to me, and reference them when available)

First point of attack:
PLASTICS
We cleaned house.. no more sippy cups, damaged plastic plates and unmarked plastics in general if we could not identify the types of plastics they were... It was brought to my attention that some types of plastics were ultimately poison. But when 'activated' they really became hazards to our health. What do I mean by 'activated?' well... My friends father in Switzerland is a scientist who did a study on plastics and how they affect our food and beverages when consumed using plastics as the vessel (cup or plate) and this was his statement generally... Plastics were created as a convenience but for use for a short period of time, for example, put your juice or water into the plastic cup and consume within 10 minutes 30 minutes tops, but with today's busy society we leave sippy cups and plastic kids cups and even plastic waterbottles and nalgene hiking bottles filled with liquids that we revist and drink even days later if they have been refridgerated.. or in the case of waterbottles in the car, yikes even weeks .. according to him, this begins the leeching process. The beverage or contents begin to absorb compnents of the plastics never meant to be absorbed. Had we consumed them within the reasonable time frame, problem reduced... save it for later... and we are putting toxins into our bodies. Plastic Plates for kids are somthing similar.. kids don't often use knives, but when we use knives on thier plates to cut their food (rather than on a cutting board or cermaic or porcelain plate) we open up the platic coating and now allow the toxic plastics exposure to our childrens foods. To make matters worse, we use the micowave.. but that is a whole other 'point of attack comment' ;)

MICROWAVE
So, call me crazy, but when we make tea for ourselves we have a few choices, microwave the water, or boil (or hot tap for some with the ultimate convenience). I always choose to boil my water, because when I microwave my water, the taste changes... DID You notice that.. the TASTE changes.. would one say that water is a flavored liquid.. not really.. so WHAT does the microwave do to water that it ultimately changes its molecular structure that it can change the taste of water?!?!
I rest my case.. can microwaving be all that good for what nature intended to be ??
But we do need to eat and drink warm things, but think about defrosting.. when we microwave meat to defrost it it changes color, taste and sometimes texture... so what are our options? (For those that don't plan in the morning and take out frozen meats to defrost or buy fresh from the market each day for each meal?? You can actually use your oven or toaster oven for defrosting... I have started, and wow, the color, texture and taste stay in tact.. imagine that!
saran wrap and platic seals in general (not brand related).....

LEAD
Okay so the big Fisher-Price recall was the beginning of a new attention to lead, not only was it now important for people whose walls were painted pre-1978 to worry, but for anyones whose kids were into dora and diego (loosely speaking) hey even the sesame street characters were dragged into the lead mess! Cheap manufacturing shortcuts are costing our children brain cells and health (and this is before they have to deal with the other known factors for such they may face in thier lives)
But how can we overcome the whole industry and be more aware of what can poison our kids... I haven't..if you have, please post.. I would love to hear from you :)

ENVIRONMENTAL FACTORS
So as I prepare this the first thing that comes to mind, which is not really 'environment'al but rather in our living enviroment.. I think about powerlines over our kids schools, and factories and working plants near our watersources and farms. Pesticides and all other things kind of fit into this factor.. things that we hope are washed away, not included in or a part of our lives, but make its way in...when possible, I try and avoid them.

FOODS
I have been compiling this list from various sources for various reasons.. and I will do my best to explain each one, but if I am not clear, comment and I can go into more details on any one of the reasons I have found.
A few of the changes we have made include:
Making the switch from iodized salt to natural sea salt is an easy and in the long run not expensive trade off... I have heard that there are parasites that live in the pancreas called 'fluke' and these buggers like to eat iodized salt and also artificial sweeteners, both of which we try and steer clear of when possible, but life happens and so we do what we can when we can (which means in our house)
No antibiotic meats and milk products are a big one, but more for general than diabetes based reasons, although the parasite theory (search: Hulda Clark for more details)also relates to the meats and milk products since some belive the parasites that live and feed off the islets in the pancreas stem from cattle and their products. (I have not decided if I fully belive this one or not.. I believe the theory, I am just not sure of they hypothesis that if one rids the parasites from the pancreas one can become less insulin dependant (Hummm.. parents, jump in here... would love to hear your thoughts on this one)
Artificial food colorings have shown in studies to cause almost ADD like sypmtoms in kids.. so for a child who stuggles with ups and downs due to glucose levels, why add more chaos to the list?!?
Vegetarian fed eggs, and meats Just a personal choice I made, also not to long after the whole Pickton Farm fiasco this one just became obvious to me (google pickton farm BC Canada if you wish for some gory details of a farmer who fed his pigs people parts this decade)

Well if I have not overwhelmed you with this list, I am beginning to feel overwhelmed myself. We do the best we can, and like quitting smoking or dieting if we go cold turkey or restrict EVERYTHING all at once, we are more likely to rebound or feel overwhelmed... So take it slow and we do what we can.. after all we have a lot to focus on ;)

Everyone has something to share...

Today as we roamed the aisles of Target looking for the new Jonas Brothers Album.. the one where Nick Jonas sings a song about his diabetes called "A little bit longer" ... (which I just found out has not been released yet except on YouTube)... My son asked the clerk if she had it. She asked how such a little boy knew so certainly of a specific song from a specific artist. Well.. He said "Nick has diabetes and he sings about it, and only him and me, and other diabetics know what it is like to feel so low, and so I want to get his song so we can listen to it and support him, he is really famous you know.. like 100% famous and still gives back some of all that money famous people make to find a cure for diabetes and other charities.. he is famous and still cool, and has diabetes!" (Yes, all that from a little boy who is 5 3/4). She was shocked.. and said she did not know that about him, but wanted to share a bit of info about the store she worked at.. that there were 3 diabetics that worked there... and she was one of them! He was thrilled... As I have mentioned in previous posts, that there are not many 'known' diabetics in our circles of schools or parks that we have noticed. So anytime anyone he meets has diabetes that is older than him, he feels pretty special to share something with them, and get a little bit of information and advice and tricks from them.

This time, he pulled out his pod and PDM (meter/remote pump) and said he wears the same one as Nick Jonas. She had never seen it before... he did a poke and showed her how it worked. Like a lot of diabetics (And she was diagnosed when she was 8 and was likely in her 20's now) still had chosen not to be ona pump for the simple reason that having the hose dangling from her was too much for her to handle. She wanted as much freedom as a diabetic could feel. My son explained to her that he feels free, he can now eat when he wants to, and can swim and play with it, and he loves it. I think he felt pretty special to be able to share his knowledge (which is limited at his age and after only one year of diabetes) with someone who really found it helpful.

This afternoon he became that mentor that he always looks for in others, and I am so proud of him.

June 20th is the one year anniversary of his diagnosis.. some celebrate it, I personally think we need to commend the person for all they have learned, challenged and dealt with over the year. It is a time to celebrate the success of love for oneself, and all they have endured and overcome. So will we 'celebrate' this every year? Well I will leave that up to my son, he is the one who is really the rock star here. I can sleep less, worry and treat all I want to (or feel I must) and still it is not me in the sweat in the bed in the middle of the night, or the one who feels the highs and lows like he does.

Nick Jonas is right... " You don't know what it's like to feel so low. But when you smile, you laugh, you shine, you glow... you don't even know". I have attached a YouTube link for those who want a teary moment and listen to this song titled "A little bit longer" Slated to be released (As I just found out moments ago... to be released this Summer 2008 http://www.youtube.com/watch?v=5OvC-QaatH0

Never a dull moment

As midnite nears and the house is asleep, I cannot seem to sleep for the night, mostly because last nite.. when that 'mamma intuition' told me to check my son, he was sleeping like and angel, probably dreaming of something wonderful, when I checked his BG to find him 29!! for him, that is low... for most anyone, that is low! Just when you think you have it all figured out curve balls come a flyin!



I have this theory when he does not eat enough protein in his dinnner, 3-4 hours after he falls asleep, he crashes .. somedays, not all days, and not consistantly enough for me to know why. We speculate it is not on the days he is growing (when he releases extra growth hormones making him high), and could be perhaps on days he has been extra active during the day... or perhaps, he left a crust on his bread aside that went un-noticed. You never know... and so here I sit.. typing away, thinking of the future.



How will he know to one day wake himself from these lows to treat himself?? The think that gets me about last nights situation, is that as usual, I slightly woke him and got him to drink milk, and with his slight lows and back to bed he goes, but this time, I wanted to wake him enough to see how conscious he was.. and with a bright smile (yes this is rare when I wake him from a dream.. ) when I asked him how he felt, he said " great momma, I love you.. good nite" I asked him did he feel low, he said no, he felt fine... hummm... so low and did not feel it.... yikes!



This after a break from his CGM (continuous glucose monitor) of course~~!



So do we ever get a dull moment from diabetes? I don't think so...but we can all dream.. and so atleast for tonight, Iwill try.

What is 'Pancreas Parenting'??

I know, it sounds crazy, but with all the different types of parenting out there today.. why should we not be able to term our love as 'Pancreas Parenting'... and one of the first things they told me before they discharged our family from the hospital was " remember... you are a parent, not a pancreas!" Well, I beg to differ, but most importantly, I think if we think of being a pancreas as a positive idea, rather than feeling solely the burden of the lacking function of the body part... we enable both ourselves, and our children to care for thier diabetes in the most personal, and involved way possible.

I have chosen to help empower my son to want to be his pancreas. Strange, I know... but when I put it into his 'terms' it means.. he gets to be a 'glucose detective' and if you ask me.. Magnum PI had nothing on my kid ;) My son likes to guess what his BG is before he checks it... so he gets a sense of responsibility and a true aquantaince with what each different BG feels like. It was only a short while before he could guess his BG within a pretty close range. I think that makes him feel pretty good, and is a talent in itself. Rememeber, our children must grow up, we must release the 'pancreas power' to them... it will one day be thier sole responsibility. We cannot always be there.

How to empower your little diabetic (in my opinion of course);

1. Let them be their own Glucose detective, if you are still doing injections, give them a 'handy dandy' notebook and let them be a part of the journaling process. at the end of each BG test, let them put a emotion face (smily, sad, happy face etc) beside the BG so they can associate how they feel with each BG, emotionally and retrospectively, this will help them get to know themselves and their own personal diabetes symptoms a bit better. If they are using a pumping system, let them use the buttons after a reasonable time period, showing them what you are doing, and how they will do it with you.

2. Let them pick the finger or the 'process' or 'routine' that surrounds thier BG check.. we call it a poke... I know... but sometimes we have to just choose a word, and that one worked for us... a finger stick was way too formal for our son. he liked to sit on my lap in a hug position for the longest time. (Same goes for site changes or Pod changes - he likes to have a two arm wrap around while the pod inserts, and if possible, he likes to do it in the same private area of the house, without an audience)

3. Let them try and guess what they would do if they were treating themself. What they they need... insulin or food?? or my sons favorite for a high.. " a few jumping jacks should bring that right down ;)" (note: this does not always work, but exercise is important and shaking a few sillies out never hurts!) We think drilling into everyone in our sons life that "insulin brings BG DOWN and sugar brings BG up is an important 'lock to memory' statement.. most uninformed friends assume if the child is low, they need more insulin!

4. Ask them what they would like for low, and if they are really young, but understand.. give them a few healthy choices (eg. would you prefer a juice box, or a fruit leather?)

5. Teach them about the importance of the meals and snack choices. Let them know that if they have a protein at each meal, they will feel better for longer and it works nicely with the insulin.. . protein is a good thing.

6. When teaching them to read or math, use labels... empower them to know how to look for the important parts of the label or atleast know the terms to guide others in the right direction. Show them how you portion their foods or use serving size as a guide when you plate their food, let them use measuring cups and be a part of the process... You will be amazed at how fast they want to learn math! Our son was doing multiplications before he finished kindergarden so he could figure out how he could get more than one serving size and figure out the carbs.

7. If they have had a low in the night, or a high.. ask them about it in the morning, if they remember it... and what you did to treat it. You will be surprised, and it lets them know what happens to their bodies in the night time. My son gets a bit too excited with night time highs in the wee morning hours, he figures it has got to be growth hormones, which means he is getting bigger and taller each day... which to a 5 year old means he will probably run faster! ;)

8. Find a cool case for them to use to carry supplies when they feel they want to. Don't make it a burdon, but let them be a part of the responsibility process.. you would be surprised, how it can make a child proud rather than embarassed of their medical condition when they get the attention for a cool camoflauge pack with supplies in it, rather than always having to run to mom to get stuff out of her purse.

9. Love your child, accept the disease, and talk about it. As we all know, we cannot pretend they don't have it... so we must accept diabetes as a freind, like ourselves, we must take care of it, and respect it and understand it..... try not to make it mad ;) We all feel better when we cooperate :)

10. Live by honesty being the best policy.. there are no good or bad numbers, but highs and lows, and it is more important for them to express that they really want the "name the carb treat here' and why they want it, and how they will feel if they have it (physically and emotionally) and how they will feel if they don't. Our son has become quite attuned to knowing if something is going to make him feel a bit on the YUCK side if he has the big piece of cake instead of half and small side of a reasonable choice of icecream vs. the way he feels if his piece is a bit smaller than his friends peices.. it only takes a while before they realize, they can play harder and feel better if they make good choices. Insulin was not invented to load up on carbs and try and push it to the max... we have to still make responsible choices with our kids within reason regardless of if they are diabetic or not.


11. Never let them give up hope. Some parents promise a cure, I promise hope, and progress, in the past year alone the progress we personally made with supplies and his numbers was incredible. Technology has come far, science has come far... Superstars have come out and openly discussed the importance of the cause. Never give up, and never let your child give up hope. My son still says, " every wish I make I know it might not come true today, but I keep wishing cuz you never know, if you keep wishing it might come true one day.. even if it is not today" (I don't need to remind you how fast diabetes forces a responsible child to grow up)

I would love to discuss any ideas or issues or scenarios you deal with and how you help you child. Ultimately, we are in this to help them.. to help themself.