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...