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 :)