it's coming...

The anniversary date of Jared's diagnosis... 2 years will be on June 20th... although our log books start on the 22nd of June when we were to start logging the rest of Jared's Carbs and blood sugars for life (or until a cure)... to me, both dates are important.

We have come a long way... A really long way. Jared was only on injections for 6 months and as a hungry (Smart) boy who started avoiding carbs = avoiding shots... we needed another solution... Stage left - the Omnipod. For which we are thankful, 18 months of basal rates and easy eating. (Although I have to say that now - 2 years later - Jared does not fret to take an injection is his lower back/ upper butt if the pod fails or he needs some extra insulin.. but 10 injections a day was enough to make us all want to avoid carbs, although he never knew I felt the same way ;) But with the pod, it automated our 'log book' system... it does it all, which was a nice change too. (although I miss the part where Jared got a sheet full of different expression faces and stuck them in his log book to let us know how he was feeling) But I am okay to move on. Each day brings change in so many ways.

We have battled ketones, we have had late night scares, (day time scares), we have been really mad at Diabetes, and we have ultimately embraced this disease (for now) so we can move on. Each day is a new one, one that we try and forget, but are constantly reminded...

We fought with public school 4 days after diagnosis (2 month before kindergarten was about to start) to make sure he was safe. he wasn't. We went to private school for the past 2 years and have gotten more independant in his care and we are venturing back to public with a new principal and district nurse (Who won't be around much) and we are feeling okay... we are moving forward as he must. (although we have not yet finished paying the bills for it).

Jared has come so far... he is a big part of the book that has been written, it is all him, he is an inspiration and has a passion in him to help others who are scared. He was scared, we all were scared.. but we are lucky. Lucky for each day.

I hope Jared's book gets published and that he can have some impact in helping other newly diagnosed kids, or kids who just feel alone and need to know they are not.

I am feeling unsure and anxious about this upcoming day.. because I don't know what to do with it!?!? I have heard some let the child choose how they want to spend the day and be in control of as much of the day as possible to remind them they can have control in thier live, and they have done amazingly well over the past year, others celebrate another year of dealing, and others let is pass quietly. I am not sure what I want to do... perhaps I will leave it up to Jared.

It is coming.. 2 years that mark a huge adjustment in our lives, one that has changed it forever.

Everyone has their own fight!

I have become a bit more 'sensitive' and although I have always considered myself compassionate, I would say, since Jareds diagnosis (do you capitalize that 'D' in Diagnosis to notate its impact? .. hummm...something to think about??) I have become even more so. I realize this at odd times, often catching myself, not feeling sad for only my son, but for all the people all over the world who live with Diabetes. This morning I did a walk for a cure. Not Diabetes, but Breast Cancer awareness. My first 5k and I did it because a dear friend, whose mother in law is a survivor who walks each year, and I wanted to support her.

(note: Since Jareds diagnosis of Diabetes, for the past 2 years (June 20th will be 2 years to the day) I have thought of doing the JDRF walk, and wished I just did it... I found excuses, including Jared telling us he did not want to, and not encouraging him to try (don't judge please... there are somethings not easy for everyone) I never really knew why... I care about the cure, I care about the fundraising... but until today, I did not understand what it is really about.

Today after the walk, the survivors had a parade/walk... and I cried. I felt a great energy the whole walk, I got teary eyes as the cheer leaders on the sidelines cheered us on, I got emotional when I saw the effort that those affected put into their team costumes or personalizing their shirts (including the little girl with the pigtails who could not be more than 6 years old whose shirt read (' In memory of my MOM' and it was decorated by her with flowers and hearts and all things little girls know how to draw best), and at the end, when I saw the whole group of amazing, strong women who faught for their health and for their life... I cried.

Everyone has a fight. We fight each day for another healthy one. Others fight against other illnesses.

Today reinforced to me that these walks are so important, because of who they touch... everyone who is there. Especially those who have had to fight the hardest to be there.

I know that in that sea of people.. no one, no one... NO ONE felt alone. We were united and for some reason, I know that I not only was blessed with getting energy from these amazing people today, but hopefully I was able to give just a bit of energy too.

All this aside, I know what my real fear was about the walk for our cause.. and I now have year to overcome it. I don't want to cry in front of my son, and let him know how much this affects me. He knows we all are frusterated with irratic blood sugars that are out of control, and the fact that we wish that no one had to have diabetes EVER, but he (to the best of my knowledge) does not know that this disease makes me cry sometimes.

and you know what else I learned... it is okay to cry.. because we are not alone, there are so many around you to send you strength without even knowing it and those tears dry pretty fast. Not for any reason other than... we have SO much to be happy about, and so much to be thankful for... for each day, everyone has their own fight!

What do you want out of it?

So Jared, his grandmother and I have been working on a book about diabetes for a while now, we have gotten to the point where we are trying to get it published and 'out there'... He must have over heard a conversation between my mom and I and 'what we want out of this book' now that it is finished... so my son on his way to school today said.. "Oh, i have to start thinking about what we want out of this book." I asked him what he meant... he replied with " you know.. the price..." " the the people in Hollywood are maniacs" I asked him what the meant by that and why are they maniacs?? .. he replied " Well their price is high.. they make so much money, and they are maniacs because they spend it on themselves.. instead of research to find cures!"

Well, I know what Jared wants out of this...

The interesting thing is.. that we do not often 'talk' about the cure.. we focus on today and each day dealing with what we have and being the healthiest we can be today. but last week, at night, as my son slept and I snuck in to check his BG.. I looked at him sleeping.. and I wished for a cure... a really loud (in my soul) cry for a cure... I want him to just sleep and us to just sleep and eat and play and live.. without diabetes.

So wish us luck with our book... We are hoping to get it sponsored so every new diagnosed child will get a copy. We have yet to find another book out there like it.

Do you have a great book that your kids love/ed when first diagnosed? Did you appreciate free books when your child was diagnosed, or did you go out and buy a book or go to the library? Were books helpful for your child during this hard time?

A happy mothers day to you all

I can't remember which blogger it was, but I recall some mom out there who had ketones and vomitting child out there each year (it may have been valentines day) but in either case, I hope you all get the day you want, and a child who goes to sleep with less fear than when there are ketones.

I think of this story, because... We had a great day... my first breakfast in bed... playing in the yard in the sun, and even a 2 hour boat ride for kicks... we all had a blast. Odd thing was... Jared turned to me on the boat and said.. I guess I am 300... I asked if we should test and then kept looking foward and smiling with the wind on his face as he held and waved the rope from the front of the boat as though he was steering a horse.. with an excited 'heya,heya...woo hoo'. I reveled in his joy in that moment and having has checked him an hour earlier and he was at 190 I was skeptical and thought... we will be back in one hour, waiting one more hour will be fine... He was having such a good time, I just wanted him to be the kid who was having the best mothers day ever!

he was 420 a hour later.. HOLY self reliable CGM brain in a 6 year old. His pod got itchy, and sure enough he scratched it / pulled it/ poked it off... and has not been getting any insulin for about 4 hours.. including his lunch bolus...

I thought... ketones? should we check? we should because if we don't, they could be there, then I would feel guilty.. I would rather just check and say 'phewph' good night. He again called it... he saw the strip as he peed on it change color... he knew the moderate color.. he said moderate, then said..'the one before large, and after small' He is such a good kid, who knows so much about a disease that should not be! but is :(

Extra insulin and off to bed for him... Happy mothers day mom...

p.s His card to me was a poem, and he said 'Mom,I love you and thank you for feeding me and giving me good food. I love you.' For most moms, this may have seemed odd, but for me.. I know, he is saying thank you for keeping me healthy and alive with diabetes. After all to a diabetic kid, food is medicine.

Happy mothers day to all you moms who are up too many nights, probably cry a few silent tears and laugh and love your children ... And care for them so tenderly.. they know it, even if they seem to little to show it.. but when they can... boy you know it is all so hopeful...and everything is so clear!

When you least expect it... no answer,,, and we move on,,

So after my hooky day that I mentioned earlier... we had some random Low BG's... and then some more, and then some that were harder to recover from than before... 15 carbs, test still low(if not lower) 15 more carbs.. rinse and repeat for an hour before we got up to 80! 2 nites of this and on the second nite... we decided that with a white poop and a mysterious 'non absorbtion' of carbs.. or over absorbtion of insulin, we would call the dr hotline(s).. I called 3.. none had advice but to go to the er at childrens for some answers.. they were all anticipating some storm was about to happen in his body... within an hour he did vomit... and then the low... got lower!

I whisked Jared off to the Er while DH stayed home with my daughter and sure enough.. more lows... when we got there, they gave him the antinausea med (which he asked for when he got there! to quote him " I wish I had a Zofran"... the nurse said that any kid that would wish for that must know what is going on and how could she refuse... they were fast getting us in a room, and fast to get labs drawn... I was not sure for what... we did not have ketones, so no IV was 'yet necessary' unless he dehydrated...but the line was in the arm if needed

post anti nausea med, he was still low, and downed 4 more juices.. we finally hit 80. We shut off the pump...(not sure why I had not thought of that earlier that night.. ) I down dialed the pump the night before when he was going low, by only 15% and he woke up with ketones... from one extreme to the other - Yikes... this is odd and crazy... especially for Jared.. he is happy in his range of 80 - 180 and prefers to stay there ;) as do we for him ;)

They admitted us, with thoughts of liver or adrenal or hormone questions/problems unanswered in the horizon.. labs they were running a plenty... that night, jared went from 59 - with 15 carbs to recover, to 42 so we added 16 more carbs, he went up to 62 ... and so on... you get the picture...
they shut off the basal, again he woke up high after going low until around midnite..

they kept us another day.. now thoughts of celiac were on the mind... and all the good endo's seemed to have left for the day.. leaving us with a rather un confident, un competant dr... who after a day with no lows just results and supervision suggestions...decided that after a low of 67 just before dinner(which really is not that bad) which we decided to (at dinner time) let him eat off, rather than fill up on juice (Which is not our preference for a low anyway, we usually stick with milk as we feel that the protein/carb combo for a stable recovery) so he consumed 58 carbs... fifteen minutes later, we checked, he was 104.... perfect, my plan was to cover him for 58 minus the free ones... and move forward with a plan for discharge... Dr incompetanto decided we were here battling lows, and we should not give him any insulin and see what happens

(we interupt this blog to remind those who even might not know someone with diabetes that almost always if you don't give a diabetic insulin with food.... they go HIGH and ketones will surely follow)

I sucked it up... thinking he had a plan. He followed up by saying... and with no insulin on board, we can hold off on checking him for 4 more hours! (WTF!!!!!) okay, call me crazy, but I can play it that safe (or stupid) at home, and don't need my son in the hospital for them to play silly games that really did not seem at all logical.. I can assure you we have never had an experience like this before, and this new dr, clearly did NOT have a plan!

He came back 10 minutes later, and said, you really think that if we don't cover him or give him insulin or correct him, he will go high enough to wake with ketones?? I confidently, yet humbly said that I was sure it would, but maybe there was something I did not know, but I would be checking him every hour to watch him climb, as I am a data collector by nature, and never again would I not bolus my son for a meal and see what happens (for fun - NOT!)

We checked him after an hour, he had gone up 100 more, an hour later, 100 more... then I cryed... quietly in the hall, so not to alarm jared just after he fell asleep. A nurse advocated for me and made me feel it was okay for me to feel strongly about my son getting some insulin tonight.

The dr came back, i stood up for myself gently telling him, i could play it safe at home, and not 'collect data' by not checking him often if I was at home, which even then i would not do.... I needed them to allow me to give my son insulin...so finally at 380 he agreed would could do a half a correction (Still no basal) that half a correction was equivalent to the basal rate he would have gotten had he been on one.... and so... shall we play a game here, quess what happens next?.....

with a barely basal rate of a correction every 2 hours, he stays at that 380 from 8 at night, until 8 the next morning,.... steady as a rock.... and woke up with????? you guessed it... ketones.

okay, so my husband calls to say goodmorning, and as i am relaying this message, he is reminding me that we brought him there for guidance and safety not expecting all this and now, they are making him sicker... or sick.

we clear the ketones, I pony up again when rounds happens, with that dr standing there, and I said that I was not happy with his treatment last night, the obvious happened, and we need a plan, so i can take my kid home...

long story short.. a few more tests( and yes, 2 seperate (more) blood draws) later we have kind of had it... we increase his insulin ever so slightly, get him in the 200's and ask to be discharged.

The happy ending is that Jared is home, and eating normally again, and his blood sugar was 190 before going to bed, I will as i would have anyway, watch him like a hawk when he sleeps, and continue a conservative basal rate and conservative correction.

3 days at the hospital was enough to be greatful for all the uneventful but still diabetic days we have. We can handle this, the unknown is the hard part, but almost 2 years into it, realistically, i his mother aka pancreasparent know him best, and once he was out of the low woods (at risk for coma and seizures) I should have been bolder to do what i would have done at home in the safety of the hospital instead of letting them do nothing, but keep him 'safe' the test results for celiac arrive next week, everything else was negative thankfully... I will keep ya posted.

I think I needed this, a vent, and a breath, and to be home in my pj's with my hubby and daughter.

Home again, home again,,, jiggity jig :)

6 carb popsicles!

So I found a fun treat for my kids and I thought I would share it (Okay so it is a bit early before summer yet. but none the less we are excited!)

There are so many ingredients on all the popsicles out there.. and lots of carbs (even on the sugar free ones which we try and avoid, because it does not save you that many carbs).. this one you make yourself with your own bevie choice. We chose Orange juice - not watered down (although now thinking of it, that may work too ...hhhmmm....)and each pop holds 1/4 cup that makes each fun pop only 6 carbs! and a whole lotta fun. (okay so I splurged on the cost of the pop container, but I figure we will get lots of fun out of it... )

I hope you find some good fun treats too, and please share them, I don't ever want my kiddos to feel deprived, but we try and stay really healthy.. but they are kids, and every kid loves cold treats! :)

Sometimes we forget...

So After our spring break, Jared had a few suspicious pods, was recovering from the 'cough' thing that was going around and well, we still dragged him 3000 miles from home, and then after our 6 hour flight, we slept for one night at home, then headed into the car for another journey to be with more family for another 3 hours each way... he got in the car with ketones.. I knew.. I could battle those suckers, honestly I am getting used to pods not delivering enough... I can attack the ketones aggressively, especially if I know I am within a one foot radius of him .. in a car - he is not moving and not consuming anything. Ketones done.. Fun with the family - Drive home. Monday is a school day.. That night he has a bit of a problem falling asleep from a belly ache.. I check ketones, we are clear.. We assume he ate too much dinner.. and off to bed.. He wakes up tues morning, a bit of a tummy ache - we check for ketones - Clear...but oddly he has been running low since last night which is not been the norm for some time now.. I decide we are all exhausted.. lets play it safe and have a home day = play hookey. All day he had a slight belly ache and kept going low.. no ketones..

This is the part where you chuckle... I called the endo and asked what was going on. She replied "Funny how we all know how to deal with ketones and I would just guess... for the first time in almost 2 years (since diagnosis) your son has a tummy ache :) unrelated to diabetes! And that is why he still has a pediatrician ;)" She was ofcourse so nice and friendly and was still supportive while reminding me that we are in auto pancreas parent mode.. sometimes, (Rarely) but sometimes... kids are just kids... and the diabetes is just a side note.. a buddy we watch over... but not the main character we keep our eye on ;) (This was my interpretation BTW). We had lows all day and most of the night... we decided to lower basal rate, give him a glass of milk.. and call it a night.. know he would be okay, and try and fill up his reserves in his liver, should he need them.

I would love this story if it ended here.. it would prove the whole point of the diabetes does not rule the body...

but...He woke up at 365... oops... still a tummy ache... and now ketones... Humm....

I think the bug, finally disturbed the diabetes, and now we battle both...

Well, I get a home day with a kid who has a tummy ache, but not vomiting.. and we can manage this... you know what?!?! I'll take it... after all... with two kids.. how often do we get to spend a little extra 'love' time with the older one of our kids who is usually in school all day?

I am optimistic we will manage this too.. it won't be a hospital day... we are watching him close, enjoying our time as best we can.. and letting the diabetes just being in the background...

these ketones are not going to fool me for today again.. he is still my kid with a belly ache...(ketones) but mostly just a belly ache :)

Time off would be nice ;)

Happy Spring Holidays... I kept wishing for Jared that he could just be a kid for a day... but he knows as well as I do, that if he doesn't think before he eats... he doesn't feel well. I know for a lot of us, we wish for our kids for a break - a day, a month, even a few years.. Looks like something may be on the horizon. I find it interesting that they have tested this on people including children ages ranging 13- 31... Wonder what state and side effects happen after the new 'honeymoon period'... It is obviously a few years away still before we fully understand this.. but seems that the scientists are busier than ever... We all know, our kids could use the break! (Pancreas parents too!)



Transplants help Type 1 diabetics skip insulin
Tue Apr 14, 2009 3:03pm BST


CHICAGO, April 14 (Reuters) - People with type 1 diabetes who got stem cell transplants were able to go as long as four years without needing insulin treatments, U.S. researchers said on Tuesday.
They said the process, which involves injecting people with stem cells made from their bone marrow cells, appears to have a lasting effect.
The study involved patients with Type 1 diabetes, formerly called juvenile diabetes, which occurs when the immune system goes haywire and starts attacking itself, destroying insulin-producing cells in the pancreas needed to control blood sugar.
These patients typically need daily insulin therapy to control their diabetes.
Dr. Richard Burt of Northwestern University's Feinberg School of Medicine in Chicago and colleagues first reported on the short-term success of the procedure, known as autologous non-myeloablative hematopoietic stem-cell transplantation, in 2007 but have since looked at how long it persisted.
Writing in this week's Journal of the American Medical Association they said 20 of 23 patients "became insulin free -- 12 continuously and eight transiently -- for periods as long as four years." The transient group of eight had to restart insulin at reduced levels.
The patients ranged in age from 13 to 31.
To find out if the change was lasting the research team said they measured levels of C-peptides, which show how well the body is producing insulin. They found those levels increased "up to 24 months after transplantation and were maintained until at least 36 months," their report said.
Even in the group which had to restart insulin there was still a significant increase in C-peptide levels that lasted at least two years, the researchers said.
They said the procedure was able to induce "prolonged and significant increases of C-peptide levels" in the small group of patients who were taking little or no insulin.
"At the present time (it) remains the only treatment capable of reversing type 1 diabetes mellitus in humans," the team wrote.
"Randomized controlled trials and further biological studies are necessary to confirm the role of this treatment in changing the natural history of (the disease)," they added.
(Editing by Julie Steenhuysen and Alan Elsner)

The april fools joke was late this year...

All was too quiet.. I think I said that in the first of my two posts yesterday..(after not posting for a while) Last night 7pm pod change... 2 am.. Jared wakes nauseas with large ketones!! it is now 10:40 am and we are still getting rid of those suckers.. looks like he is getting an extra half week of spring break this year~!

1st question - WHY??? The pod change was done like the rest.. when I syringed the insulin directly to him, it wasn't spoiled... it worked... The cannula was not kinked, I didn't see any obvious occlusion.. it did not alarm.. his BG's prior to 2 am (midnite was not so far off base that we saw it coming)... Virus??? Maybe?? combined with pod issues?? huh? the question remains?? why?? I have to drop it - we will never really know.

I think that this experience again has reminded me that we love the pod, but even with killer algorythms comined with the dexcom (which we also currently use off and on) this is so FAR right now from reliable that we can't only count on this technology. ( to become the basis of an artificial pancreas) I know this seems dramatic - and we love the pod when it works (Which is most of the time) but when it doesn't wreaks havoc on poor 6 year old Jared, on me and even trickles to dad and his sister when the action happens middle of the night! ~ but truly, pod or pump, when you don't have your own working pancreas this can happen at anytime, with any technology or routine...

All was too quiet.. I keep thinking.. isn't that sick?!?! I an an optimist and belive in the power of intention... I sure hope my confidence did not trigger this episode (okay ~reality check ~ I know deep down it didn't) .. but seriously.. his numbers from the past month have been so stellar, we have consisered framing the print outs and have sent copies to his Endo who is also showing them off around the hospital like a proud mom with photo's of her child ;)I remember during our first few months on the pod (6 months post diagnosis) we would see blogs from fellow diabetics whose graphs were as straight and controlled as one could imagine perfection would be, it seemed so unattainable... we were getting there. This disease is so unpredictable - nothing is safe, or regular, or predictable!

Another day - back to the optimistic outlook - after all, in a few days we board a plane to visit great gramma across the continent... we all better be feeling our best - after all this rain... we are her sunshine!

Riddle me this...

The article below (especially highlighted area) suggests that a pod/pump with a CGM that syncs is somehow worthy of being called an artificial pancreas??

What do you think?? Is this the answer we were looking for?


ARTICLE:
Researchers Successfully Create Computer-Simulated Model for Evaluating Artificial Pancreas

- Key Step in Ongoing Research to Replicate Insulin-Producing Function of Healthy Pancreas for Type 1 Diabetes Patients -
SANTA BARBARA, Calif., March 31 /PRNewswire/ -- A key step toward the successful development of an artificial pancreas for patients with diabetes has been achieved, according to new research published in this month's issue of Diabetes Technology & Therapeutics.
Researchers at the University of California at Santa Barbara, Sansum Diabetes Research Institute and Stanford Medical Center have effectively created a computer-simulated system for evaluating an investigational artificial pancreas comprised of the OmniPod(R) Insulin Management System--including the OmniPod insulin pump and Personal Diabetes Manager that controls it--and a continuous glucose monitor, in this case either the FreeStyle Navigator(R) or the DexCom STS7(R). The system also includes an algorithm that automates the interaction between the pump and monitor, and facilitates the running of a variety of tests and challenges to the software and component devices. The UC Santa Barbara-developed software and algorithms are also being used with a number of other pumps and monitors in developing additional systems.
"While we still have a ways to go, this new system brings us much closer to making the artificial pancreas a reality for type 1 diabetes patients," explained lead author Eyal Dassau, PhD, Diabetes Team Research Manager at UC Santa Barbara (UCSB). "This achievement is vital--we now have a way, prior to patient trials, to fully verify and validate that an artificial pancreas can efficiently operate in the variety of conditions reflective of a large group of patients with this disease."
The research is part of the artificial pancreas project, which is funded by the Juvenile Diabetes Research Foundation and is being conducted by an international group of diabetes research centers. The project's first goal is to integrate an insulin pump and continuous blood glucose monitor to closely replicate a healthy pancreas for patients with type 1 diabetes--patients whose pancreases no longer produce insulin, which is used by the body to control blood glucose levels. An artificial pancreas will allow for tighter and automated control of blood glucose levels, which would significantly help to avoid the long-term complications of the disease.
"This new system will really help streamline the preclinical trials; it will provide data central to the regulatory review process," said investigator Howard Zisser, MD, Director of Clinical Research and Diabetes Technology at the Sansum Diabetes Research Institute in Santa Barbara, CA. "We plan to begin using it in the next several months."
UC Santa Barbara (UCSB) is a leading research institution. The two groups involved in this study at UCSB are the Department of Chemical Engineering, which is committed to excellence in teaching and research and in 2007 was ranked ninth in the United States and second in the University of California by U.S. News and World Report, and its Biomolecular Science and Engineering Program, which offers a unique interdisciplinary approach to graduate training and research spanning Biochemistry, Molecular Biology, Bioengineering and Biomolecular Materials.
Sansum Diabetes Research Institute is a non-profit research center devoted to the prevention, treatment and cure of diabetes through research and education. In particular, it is known for its work on methods to detect and chart the progress of diabetes and its expertise in new diabetes technology.
The OmniPod Insulin Management System is manufactured and sold by Insulet Corporation (Nasdaq: PODD). The FreeStyle Navigator is a product of Abbott Diabetes Care, and the DexCom STS7 is a product of DexCom, Inc.

And the verdict is in...(or is that out?!?)

After deliberation, and discussions with both schools, we made the decision to send Jared to public school, to our local district public school. The one that has wronged us for the past two years, but yes, also the one who now has a new principal and district nurse.

They have assured us that his best interests are theirs too and we need not worry.

For now, I am not.

I am quiet... waiting, and preparing for a successful start... with the fore-planning done to get the school ready.

Sometimes, no new news is good news.

Sorry I have been so quiet... I have needed it ;)

p.s His current Private school has assured us that in a heartbeat (and a written cheque ;) ) they would take him back if they have space.... This helps...

What to do? What would you do?

The plot/ dilemma is here.. any advice for me?

My son is in 1st grade and is bright, he attends montessori (private school) We ended up there by default as the public school was not ready for his diabetes (Trust me, 4 days post diagnosis, neither were we, but we did not have a choice) He ended up at a wonderful school in which the teachers are really sincere and care enough to help my son with his diabetic needs.

The issue... My daughter is going to be going to going into kindergarten this year, and we were thinking we wanted both kids together... Sending 2 kids to montessori would break the bank (to say the least)SO... do we pull our son and put him into a public school (Which note, now has a new principal and new pseudo nurse (She is still nurse to 6 schools - so does not spend much time at her school) or put my daughter into montessori, or split them up?

Aggghhhh! Pressure is on, everyone needs us to enroll.. and pay deposits. I need to decide and I can't. I Love the education my son is getting and his zest and love for learning, and the extraneous and extra subjects he learns at this private school really help fuel his passion for learning... But will this.. can this continue at regular school?

What would you do?

So the underlying issue is that it is not only academic, it is social as well... in his mixed class (and ultimately hers too) there are very few kids the same age as your child. And from the current selection in his class, the other boys have major behavioural issues.. not to mention lack of filters and discretion! The appeal of the local public school is the new friends and a class full, if not 2 - 3 of new opportunities for friends...

Is the grass always greener?

Help!?!?!? Please.

Imagine that I am so confused about the above, I have back burnered that we have to factor in the whole diabetic issues of testing and lunch boluses...

Ack! Ugh, Sigh... HELP!!!

If you give my kid a cookie...

I have read my kids the book 'if you give a pig a pancake' and 'if you give a mouse a cookie'... well here is our story of 'if you give my kid a cookie....'

It was a beautiful day and all was great, we were bike riding along the ocean and train running through the forest and running outside while the sun was out. After our adventure for an afternoon snack, we passed our all time favorite bakery. We have mastered the 'croissant' bolus... so we have not let diabetes stop us from visiting our old time favorite digs for a treat. This time my daughter had her heart set on a cookie... well our son then wanted one too.. he was willing to for go the croissant if only he could have some peanut butter cookie. It was a big one.. almost the size of an infants face.. his BG going in was 116 and we thought with all the activity we could 'let him be a kid' *dun, dun , daaah.... we bolused a good amount, and ... well... if ever there were excess of carbs, those buggers would be hiding in that peanut butter cookie.

If you give my kid a cookie... 3 hours later... he will climb to 399... extra bolus... cover for dinner.. and just then, as luck should have it ... a pod change.. dun, dun, duuuh... the plot thickens... the pod occludes, and no warning alert is given to his little body... he climbs into bed.. we think we are still playing catch up with cookie and the high BG is from that... but low and behold the new pod decides it can't push his occlusion through the line and .. dun. dun, duuuhhh - DOH! I thought I saw the occlusion in the night and start injecting him... trying to keep up with what he have been dealt... A pod change to a sleeping kid is not nice - and that is just peeling the adhesive off the first pod.. not to mention the insertion of the new cannula, which is loud and a bit of a shocker while you are sleeping!... and an hour later, he is up complaining of a tummy ache and .. - Thank goodness Jared is so intune with his body and listened to it.. who would have thought we would be dealing with this in such a short timeline, but ...we check for ketones - Moderate! SH*t :o( this is the beginning of what could be a long night... he is up and we change the pod.. we continue to inject to make sure, get into bed with him, and try and sleep it off... Half sleeping he asks " if I didn't have diabetes would I be up feeling sick right now?!?" We tried to explain that kids all over the world can wake up in the night not feeling well for all sorts of reasons.. but inside we were sad.. this time, for him, it was only beacause of diabetes (and a cookie!??!? and a bad pod?!?!)

we wake to a new day.. with a happy ending... by 8am ketones are gone and he is ready for breakfast and back to 150...

As much as we tell ourselves, with the miracle of insulin, our kids can eat what they want..(And maybe because we don't encounter it very often.. it had an extra negative effect..) This innocent enough cookie started a chain of events that lead to ketones in the night... (for some reason.. moms intuition even only suggested a mostly protein dinner after a high reading post cookie (pre pod change) and that helped... but imagine... what mac and cheese could have caused to this whole chain of events! More chaos. And shouldn't a kid be allowed to eat what other kids eat... In our case.. I think we know ... that answer is 'no'.

I went to sleep earlier that night an optimist - that is who I am... and after middle of the night injections, and sore tummies, sad questions and ketones, I went to bed chanting I hate diabetes, diabetes sucks... I was mad... but that was not helping the cause..

(self talk section: I even tried earlier that morning to get him to wear his CGM - bribes and all... and I feel for him, for all he has to go through... but I can't let guilt win.. care and diligence is the only ammunition we have for beating this disease... so for now... we can write stories about uncalculated cookies.. but for us, they will only be fairytales)

I wish for everything in the world, that we could go back in time a year a half.. it was a high point in our lives, and then diabetes hit.. it could happen to anyone, and sucks big time... we learn from it and my son has shown me that kids can be heros... but I wish it all played out differently.

Tired and resentful - the optimist signs out... for today is another sunny day, and we move forward, not letting the emotions overcome.

Enjoy the day.. we will...

Signing out again,

The Optimist!

A poem about test strips...

Oh test strip... We know you hate to be thrown out, but you must!

you are such a little thing that is so small but says so much... but still after you are used, you must be thrown away.

You sometimes remind me of clowns fitting into a clown car when we empty the diabetic kit at the end of the day (or week) Seeing just how many of you can jam yourself into the bottom of the case to hide... until you are found and discarded.

Oh test strip.. how much fun you can be when it was figured out that when seperated after use, you are like stickers and can be stuck.. well.. anywhere.. and everywhere. (especially by little sisters)

Test strip... as excited as we are to find a few more in a bottle when we need to test and thought we were out... we are not as excited to find you used and in our beds at night... on the floor... and stuck to our bodies ;P

Little test strip, some day, we will make biohazardous art with you, but for today.. could you find your way to the garbage can... please!

Thinking of giving the public school a go - Again!

Had a great meeting with the new district nurse and she is *drumroll please* a type 1 diabetic herself. She guaranteed me a safe environment for Jared at school... I believe her. I can't believe i actually told her that I was happy she was diabetic (but not to take it the wrong way of course!) but that she would understand where we are coming from and what taking care of your diabetic self involves. (even though she is a nurse for 6 different schools in the district - so she may not have a lot of time at our school)

The principal (new also) is on board and is wanting to put a team into place and take care of him so we all feel safe.

I am liking the sounds of this...

I will keep you posted :)

(this is a far way away from my sons first meeting 2 years where he walked away saying "Does my new school not like kids with Diabetes??)

Balance

Jared had his check in with the Endo, my husband had been working late all week, and the kids were tired, the appt has been moved to 4pm and I had no where else to put my daughter, but with us at the appt. This always makes me nervous... she is a patient lovely helper of a sister when her brother is in the hospital and when she needs to be... but for just a check in at the doctor, when it is not about her... she tends to sometimes want my attention. I guess she is trying to make it about her ;)

I was panicky... that morning, my friend asked me to watch her son so she could pack up for a trip they were all leaving for the next morning... I said yes in the morning while out running the last of my morning errands with my daughter, but one store did not have OJ, yadda yadda,,, we ended doing a bit more running around than i anticipated... Bottom line, after lunch we were both tired! so I cancelled on her... I picked up a few things from the store she needed, but I cancelled on her, out of fear of my daughter being a disaster for our appt that afternoon. so in the afternoon before we picked up Jared from school, she rested at home.

Now i regret my decision, not because everything worked out okay, but because sometimes, unintentionally i become so focused on Jareds appt and taking care of his diabetes, I forget how much i rely on my friends, and how much they do for me when we are in a pinch, and i did not return the favor.

I was so obsessed with this appt I let my friend down. (she evidently is okay with it, but I feel horrible!)

Jareds A1C was fantastic, which after a rough winter was unexpected,,, but it was bitter sweet. I felt like his great numbers was also in part because I am so focused on helping him be the best and healthiest he can be, I forget to be a good friend to others sometimes?!??

I think this is the point where i look in the mirror and ask, what is more important. The problem is.... my friends are just as important as taking the best care of my kids as possible.

How can we balance being the pancreas parent, and being yourself and a good friend?!?!

Loved this SUM post.. wanted to share it

"What Kind of Diabetes Punctuation Mark Are You?"

Some days, I'm a question mark, constantly wondering. "What caused this high?" "How do I figure out this basal rate?" "What kind of foods can I eat today?" "Am I a bad person because I ate that?" "What the hell is that thing BEEEEEEP!ing for again?" "Where is my meter?" "Is that because I'm low or because I'm me?"

Other days, I'm an exclamation point, frustrated and a bit burnt out. "I am mad!" "I don't want to deal with this stupid disease anymore!" "I want to go to sleep without all these devices!" "This isn't fair!" "I quit!" And also, "Yes, I can eat that!"

Moments where I can't separate myself from my disease become saturated with hyphens. It's all "diabetes-related" and "high-high" and "blood sugar-wise." A doctor-patient relationship. Am I Kerri-with-diabetes or Just-Kerri?

There are days when I am a comma, taking a brief pause before making a decision. "I just treated the low but I still feel low, so I should wait before eating something else." And on particularly confusing days, I can be a semi-colon, taking an even longer moment to make sense of something. "I'm low and I've treated it; however, I exercised, ate something sugary, have active insulin, still feel the low, and have no idea what to do next."
But overall, my diabetes is punctuated by an ellipse. I manage the moments, but it's always a question of the unknown. Yes, this is the "now," but what happens later?

If I eat this, I could ... If I go to sleep on this blood sugar, I might ... If I spend the next five years ignoring this, I may ... If I don't do this, I will ...If I'm happy and healthy, my life will be ...
Every day is different, and every diabetic is different. And every moment is left with an ellipse, trailing off into the unknown. it can be very easy some days, and completely overwhelming on others. Sometimes I tire of taking the editorial red pen to my diabetes. And other times, I need to remind myself that this isn't something I can ignore.
I think that the most important thing I can do is ... live.

Posted by Kerri Morrone Sparling on January 19, 2009 09:50 AM Permalink

** Based on the quiz at http://www.blogthings.com/whatpunctuationmarkareyouquiz/

Back in the swing of things...

We decided to put on the CGM.. I had decided that everything which had been so certain, had become uncertain.. and for a moment, in this chaos we call life, I needed my calm back, my center, my grounding.. my groove...and Jared needed his CGM on.

Deep breath. sigh, smile.

There is something wonderful about being lucky enough to have a CGM to help you through the questions.. to know (or better understand) which direction the BG is going in, and help to understand what impact all our daily decisions have on our diabetic children.

I feel like this post is the clear me, and the one who feels confident (and vulnerable) that we can survive each day, that our kids are the strongest, and by teaching them to undertand themselves, they are going to best care for themselves over the long run.

I was noticing I had become a bit too 'dear diary' and a bit on the negative side. I felt like the winter season had beaten us down.. but that is not our style.. we are get up and get ' at ' er kinda people...

I am back up and at' er and so is Jared and we feel good again...

We are healing from our winter illnesses and BGs are back on track, and tightly controlled... all while (in moderation) enjoying the little things in life that make kids smile.

My son has started writing a book with his grandma about living with diabetes, but after much thought, and reading thier first draft.. it is about him.. living, choosing and caring for himself and those around him.. and those who help him, and make his life as normal as possible while having diabetes.. that it is not what defines him, but a part of why he needs help.. so he can be like all the other kids.

All this joy has reminded me of why I can be strong, and happy and confident again.. that not all is chaos...

Registration time again...

It is registration time for school again, and I am not sure how detailed, if at all, i have gotten on this blog, of why we have my son in private school.. but in one word, it is for his 'safety' (was that more than one word???) He was diagnosed a month before going into kindergarten and so for his safety and the lack of his home schools interest in helping figure out a solution to helping him survive each day of his school day... they left us out in the cold (Yes, I know... Illegal.. and yes, ADA lawyers opted to help us sue...) but I needed to focus my energy on finding him a safe school. And we did.

We applied back to the home school last year for 1st grade and the same... not really a safe option.. so we put him back in Private... Okay... here is the part I am keeping to myself (okay, again, guess not anymore... wow, this really is theraputic, considering I started out by not feeling like talking.. but felt like I was abandoning blog) I am applying again this year to our home school. Last year when he was declined, those around me told me "what was i expecting them to have a change of heart?" They don't want "trouble or kids with issues at their school.. that is not going to change.. they have not had a diabetic kid there in the past 18 years of record" nothing is going to change!!

But call me stubborn, this year, I feel things could be different... Jared is really self sufficient (Well more than you can expect of a 6 year old to say the least) and is not on shots... he is on a pod and can do his own finger pokes... Call me crazy... but now that my daughter is about to enter school.. we need a solution for a school where they can safely go together.... and Private school is well... (is there a term past stretching us thin??) seeming as a stressful option.. There is a new principle (The old one really was closed minded and wretched! and a new designated (one day one hour a week) school nurse... This could mean change.. I hope!

Okay, so wish us luck with all the decisions and registrations for public and private that are in our next month of our lives.. and hope that neither kids are affected or saddened by the choices we as parents have to make.

Did I mention my son really wants to stay in his school until grade 3~??~ that is two more years!!

Happy New Year :)

I smile, and I breathe. And I welcome a new year, and wish you all the best.

Strength, love and happiness in abundance.

oh,... and regular BG's to all, and to all ...many good nights ;) (and days)