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Preview: The Diabetes Diary: One Mom's Story

The Diabetes Diary: One Mom's Story



Our 14 year old son was diagnosed in Dec. 2007 with Type 1 Diabetes. He was 4 years old. This blog is to share this journey we are on with J.J. and life with diabetes!!



Updated: 2017-12-08T09:43:57.738-06:00

 



3,650 days

2017-12-08T08:17:51.353-06:00

Yesterday JJ and I drove the hour to his regular diabetes appointment.  Half way there it hit me…hard. 

“Ten years!” I said
“What?” as he put a finger in his book so he wouldn’t lose his place.
“It’s been 10 years, to the day …I think….that you were diagnosed with diabetes.”
“Oh.” he says  in a way that conveys.. “Mom’s whacked!!! I’ll get back to this book now.”

Tears begin to swell, I fight them back.  Not now, not now…it’s not the time.  Besides I truly can’t remember if it was the 7th or 8th.  I have to look at this blog to remember.  I do that when we reach the doctor’s office.  The day is the 8th…..the year is 2007.

It’s been 10 years since that Pancake Saturday morning where my boy sat on the heat register swaying as if he were drugged.  Not coherent, going limp, yet still swaying.

Wait!!  I can’t’ do this…I can’t go there.  I’m sobbing and I’m just at the beginning of the story.  Which really isn’t the beginning because he’d been “sick” all week with flu like symptoms but we were so immersed in my husband’s holiday Christmas gatherings(I think we had 3 that week) that I pushed his symptoms to the side.

Y’all can read about his diagnosis…..the early days….if you’d like.  It should still be here…on the blog.  I will flash forward, spare some tears.

I don’t write much about diabetes much anymore.  A myriad of reasons but the two main ones are 1.) I have a younger son that TALKS CONSTANTLY….there isn’t the time to get thoughts formulated on a consistent basis…and as I age I find I need a lot more quiet to formulate coherent thought.  2.)  JJ is now a teenager…his diabetes is HIS…he is at the age where he can speak of it for himself if he chooses.  Kinda like doctor patient confidentiality, I wouldn’t want my medical stuff out there for the world to see unless I wrote it myself.  So to respect his privacy I have to watch what I say here.

But in all reality…. another reason….diabetes is so ingrained in our lives.  It’s been 10 years.  We don’t know any different.  We don’t know life without it.  It’s really nothing “special”…..to us.  He manages a lot on his own, yet we are involved.  It looks so much different now that he’s older.

This fall  it did change some when he was put on the latest Medtronic pump and glucose sensor system 670G.  This pump has an auto-mode feature that allows the pump to vary his insulin based on what the sensor is telling the pump.  His A1C dropped 1.1%...that’s a huge drop for us.  Still not the lowest he’s been, but exciting to see that possibly we could get it down under 7.

Some things still haven’t changed.  I still worry at times about the long term effects of diabetes.  Of his future, medically.  He’s becoming an adult…beginning driver’s ed next month….driving the month after that.  How will all that look?  How will the effects of diabetes alter his adult life?  Adulthood…..the future...his future....with type one???   I try not to think too much about it.  One day at a time.

Or 3,650 days at a time….a decade complete…..




Diagnosiversaries: 7yrs one, 5 mo the other

2014-12-08T15:22:51.811-06:00

Today marks the 7 year anniversary of J.J.'s diabetes diagnosis.  It's always a bittersweet day. I usually shed a few tears....don't really know why...but I do.  We normally celebrate with our family Toys for Tots shopping trip and takeout.  This year the older girls and Jason are working at the Operation Christmas Child sorting facility which leaves me at home with 'da boys and time to write!2014 ~~THE BADAfter J.J's Celiacs diagnosis in July, the Celiac expert advised the our entire family get screened for the disease, since it is genetic.  I had a daughter leaving for overseas, so we quickly got all of us in for the blood draw.  My results came back quickly, with really high numbers.  Two of my children were also testing positive, but with relatively low numbers.In September I had an endoscopy to get a final diagnosis.  My results came back being positive for Celiac Sprue(the official name), and the damage being severe.  How severe?   Zero being no damage and 4 being cancer..I was 3C..the closest to 4 a person can get.  So severe that I'll never totally repair my small intestine.  It will take 2-5 years to "heal" as best I can...and that is no guarantee.  I went completely gluten free the next morning.  I don't eat out.  I eat very few processed foods...because gluten is in just about everything it seems.  It's a drastic lifestyle change for us.My two other children will be re-screened when the one gets back in the states.  We'll continue on with further testing with them if needed. J.J.'s A1C was up in November...8.1!  Which really was a result of figuring out the GF lifestyle.  We would get the gluten free taken care of, then forget to dose for his diabetes.  OR because we are using so many whole foods it's harder to predict the carb counts.  Plus the GF labeled foods make his numbers wacky!!! Thankfully our ENDO completely understood and considered this a new diagnosis year....much grace!2014~~THE GOODTo say I am thankful that J.J. was diagnosed with Celiacs sounds completely wrong.  But yet it doesn't at the same time.  Do I want him to have it...NO.  But the fact that he is screened because of his diabetes, and because he was diagnosed, I was diagnosed.  His diagnosis may very well have saved my life.  And so I can be thankful.Me being diagnosed lifts a huge burden off of J.J.  Diabetes is a hard disease to have, but having both he can say that he'd take diabetes any day over Celiacs.  Having a Celiacs "buddy" in the house, has helped him through some hard times.  It can get depressing watching people eat some of your most favorite (mainly takeout) foods right in front of you. We are eating better, that's for sure.  My new favorite stores besides bookstores are health food stores...I shop 5 different local health food stores plus online for all the foods I need.  It's really adventurous...but sometimes daunting.  Either way I know the foods we are eating are better for J.J. and his diseases.  As an example....a normal spaghetti meal would have been in the 100 plus carb range for J.J....all that pasta and bread.  Now it's maybe 15-20 carbs.  He likes spaghetti squash or zoodles with his sauce and meat.  He's learned to make a pancake with peanut butter...he tweaked the recipe to also include bacon....again reducing his carb intake and increasing the protein and fat to keep him satisfied longer.J.J.'s insulin intake has decreased since going (healthier) GF.  When we saw the endo we found out his insulin needs have dropped....by quite a bit.  She told us many people when they have Celiac often just substitute the GF versions with the rice flours, but the carbs in those are sky high, and the satiation level is almost nil....so hunger is always an issue.  The fact that J.J. was able to recognize this quickly (he tried the boxed GF mac and cheese for awhile) has been a huge plus for his diabetes.2014~~THE[...]



Another Day...Another Diagnosis

2014-07-07T22:48:27.510-05:00

In December J.J. had his routine blood screenings. The Celiacs panel came back elevated.  We were advised to wait 3-4 months and recheck.  At the recheck his numbers doubled.   We were then referred to the pediatric gastroenterology clinic.  After a two month wait to get into that clinic, J.J. was scheduled for an endoscopy.



Today was the endoscopy. TODAY....after a half a year of wondering..... today..... we got the answer. Today we saw the inside of J.J.'s small intestine.  Today we saw the damage.  Today we heard the words.... again.... "I'm sorry, he has _____."  Today I felt that sinking feeling... I had held out hope that maybe it would be different for him, but deep down knew. Today I held back tears.  Today we all put on brave faces....and stepped...into...another lifestyle change.  Today we bought new foods, new appliances, new kitchen items.  Today he ate noodles...from Noodles... and pizza....from Pizza Hut....just because.  Today I think about cross-contamination.  Today J.J. hangs out with his Dad and learns how to change the brake pads on a car, and pick up round bails for the horses.  Today J.J. is still a kid.

TODAY...

I thanked God....

He loves J.J....infinitely more than I do.
His mercies...new every morning!
His provision
Living in America
The doctor's skilled hands and knowledge
Girls holding down the fort
BG 130 before surgery
BG 90 after
BG coming down from 600's after a pump malfunction last night!
J.J.'s concern that his food will be too costly
          ....his tender spirit
J.J....not much pain
Jason's job
Jason taking us and being with us 
Friends and family praying
Life ..it is..more. than. food!!

Yes....today I am sad....but today...I AM THANKFUL!!!

Another Day....another diagnosis.....








BIG D....

2012-04-20T00:36:46.526-05:00

"As J.J. and I walked through the corridor from the clinic to the parking garage it all began to sink in. "  ~~Our Bon Jovi-esque Endo Visit





This time as J.J. and I walked through the corridor I replayed in my mind and heart how that last appointment went.....but I didn't linger long....I couldn't......I was mentally fist pumping.....YES!!  YES!!! YUUUSSSS!!!!   I had to stop and get a picture of the BIG D!!  I wanted to remember this appointment.  Not only for the great results but for the comment J.J. made as we passed the BIG D on the way in....."They must have made this floor D because the Diabetes Clinic is on this floor."   I had never noticed that before!!

Since J.J.'s last appointment we made a lot of adjustments.  He went back on the pump....but we stayed on Levimer for his basals.  We bought a more fancy smancy scale.  We dosed more often before the meals instead of after.  And many, many other minor tweaks.

So....the results.....his A1c 7.4!!!   His last A1c....8.6!!!  Yes, I know they like him to be below 7 at this point.....but considering that 7.4 is the lowest reading that we've seen for the past 6 appointments(maybe more....I could only see that far back on the screen!)....I'm pretty stoked.   I think the Endo was slightly speechless.  There wasn't much for her to say.  She did try to look at the 10pm-12am time period....but that time slot has always been notoriously difficult to manage for J.J..   We'll try upping his basal on the pump at that time to see if it helps.

We have to work on the lows.  J.J. has a hard time stopping to get a snack when he's active.  He's beginning to understand the importance....I HOPE!!  

We also were shown how to use another infusion set and given a few samples.  He's so thin the only site we can use is his backside....which looks like a war zone.   This new set goes in at an angle instead of straight in....so it can be used on thinner places on the body.  J.J. didn't think he'd like it......so we'll see.

His blood work came back.....ALLS GOOD!:)  No celiacs, liver looks good.  The Lipid Panel was lost...hoping they find it!!!

After the appointment we celebrated by going to a wonderful children's bookstore.  J.J. didn't know what the store was so he said "Do I have to go in with you?"  He was pleasantly surprised.  I told him he could pick out one item.  After a bit he comes to me and wants to use his one item on his sister.....or.....maybe his little brother.   I couldn't resist.....I bought what he picked out for them.....and him!!:)

Today has a happy BIG D day!!:)



Diabetes Abortions

2012-02-01T21:15:33.147-06:00

I know I am not going to get any popularity points for this post, but the thoughts have been swirling in my head for weeks.....begging to get out.  So here is my thought process....

While praying for the unborn in church a few weeks ago the pray-er mentioned the value of life even for Downs babies.  And I don't know why but that stopped me from hearing the rest of the prayer.  What? Downs babies....what do they have to do with the abortion issue?  Well, I knew....kinda sorta....but I didn't really know.

My mind quickly went to the genetics counselor we were advised to see when I was pregnant with my son 2 yrs ago.   Being "elderly" in the birthing world my docs wanted more testing to rule out Down Syndrome.  Normally I would have told them to stick their tests where the sun don't shine....but having J.J. really made me think that if I could KNOW beforehand I was going to have a child that needed extra care I would like the time to research and learn all I could.  Prepare ya know?  Well...back to this particular session.....the counselor learns of J.J.'s diabetes and she says..."You know researchers are trying to find the genetic link to diabetes, so they can better inform parents...even in the womb."

At the time my maternal hormones were flowing. I could care less what researchers were doing I just wanted to get to the ultrasound room to see this baby.  But later....o.k...almost 2 yrs later.....my mind can't shut off.  So this lady is telling me that they are trying to find genetic links to diseases so there is CHOICE.  For whom?

Back to last week.  I was reading an article about a family that had a Down syndrome boy, then ended up adopting 3 more!!!  I was reading it aloud to my 16 yr old when I choked back tears...I couldn't read on.  The line I stopped at was this:


Ninety-three percent of babies prenatally diagnosed with Down syndrome are aborted.

I knew the percentage was high....but NINETY-THREE percent!!!  Wow!!

Then that same week I see a news blurb stating that diabetes is taking a toll...burdening our state health care system.  It's costing soooooo much....

Hmmmm......

Soooo..... if researchers figure out a way to diagnose Type 1 or even Type 2 in the womb....and since diabetes is such a "burden"....will parents be encouraged to abort that child?

Or....how about this question to Type 1 parents.....Would you have allowed your child to live?  Or would you have terminated his/her life? 
 
Would I have let J.J. live?

I think you know my answer. 

What concerns me is the thought that we should eliminate people because they have a disease, genetic disorder, or what have you. The prevailing thought seems to be that if life will be hard or costly then eliminate it.   I'm not at all saying Downs is an easy disorder.  But the few families I've known find a lot of blessing along with the burden. 

I think many would abort a Type 1 child as well if they were to look at the whole of the disease.  And that completely makes me sad......but then mad.....and then I take it all to God and pray earnestly that researchers don't figure it out.....at least for the purposes of killing more children.   I can't imagine life without J.J.....Type 1 and all!! 

Son.....you are a treasure beyond all comprehension!!  I thank God for you....diabetes and all!!!  You were fearfully and wonderfully made!!  Now live a glorious life.......LIVE!!!   LIFE!!!  HUGS!!  MOM



On the pump again....

2011-12-29T13:44:24.088-06:00

......here we go....trying the pump again!!

Yesterday was THE day!  It was going to be a fairly quiet day with all his siblings(minus babe) gone to the Mall of America.  J.J. was really scared of the shot.  He remembered it hurting REALLY bad!  We counted....1....2...3.....POKE!!  He didn't flinch, and says "Was that it?".

An hour after eating he was at 200...YES!! It's working!! 

What we decided to do (for now) is continue to give him long acting insulin for basals twice a day, but deliver some of his basal through the pump to prevent clogs or air bubbles.  We felt pretty comfortable with his basal dosages and wanted to mess with that later if needed.  It was nice to be able to give his bolus through the pump.  Once we forgot some carbs,  another time he wanted more food.  I'd forgotten how nice that is!:)  I also appreciated the pump when I checked in the night and got a slightly high reading and the pump did the .3 correction. 

I suppose the only minor complaint for him is getting used to toting around a medical device all day.  I offered to sew pockets inside his pants, but he says that'd be too uncomfortable.:(  I should try it, and let him see how it works for him.

Also....yesterday I mentally set an A1C goal for the year.  I pray we get there.    





The Diabetes Christmas

2011-12-25T02:34:01.219-06:00

When the kids were younger (and so was I)....I would stay up the night before we celebrated Christmas preparing last minute gifts.  Whether it be sewing or wrapping or assembling there was always something to keep me up late.  This year it's....you guessed it.....diabetes.

J.J. has been really high the past few nights.  This requires extra loads of laundry and middle of the night wake up calls by J.J. to dose him.  So tonight I edged up his nightly basal a little....a little mind you!!  I mean the past few nights we've seen 300's and 400's!!!  I kid you not.  So yes, a little nudging up of basals was in order.

We assumed he was getting sick.  His sister who bunks above him has been vomiting.  So we thought: "diabetes always lets us know when a cold, flu, or sickness is headed our way by unexplained highs....so edging up the basals is an o.k. thing....unless HE vomits."

But he hasn't vomited.  No....not vomit....thankfully!

He's just sitting in the 50's for the past hour!!!  I went to check on him at a quarter to one....AM!!  And discovered him at 50.  Juice box...30 minutes later....58....juice box...15 minutes later.....59.....juice box...78......and here I am passing the time writing this....waiting to see if that's all he'll need.....TIME...2:20.....A...M!!!

The kids wanted to get up early and open gifts.   They know I am NOT an early morning person.  Our pessimist  realist child informs everyone that gift opening won't commence until NOON!!  I think she may be spot on!!  

Hold on a minute.....another blood check.

Ahh....finally 130....a little assurance I can get a some shut eye.  Although probably not for long......as we watch the pendulum swing the other way from ALL THAT JUICE!!!!

And such is the beginning of a Diabetes Christmas!!

Good night all....and Merry Christmas!:)




Diagnosiversary...Toys for Tots Trek!!!

2011-12-08T22:57:19.325-06:00

It's been FOUR years today since J.J. was diagnosed.  FOUR!We celebrated our usual way by shopping together for Toys For Tots then delivering the gifts to the Kare11 drop off site in the cities!! Love you Sweetie!!!:)[...]



Getting Back in the Game: Evaluations and Preparations

2011-12-06T19:31:35.048-06:00

Since our last endo visit we've spent some time evaluating our habits to see where we can improve on J.J.'s diabetes care.  Here are a few of our observations:We are trying to dose J.J. BEFORE he eats.  Too often he would eat then forget to tell us he ate, or he would get busy, we would get "busy", and forget for an hour or more.   I wouldn't say this happened ALL the time, but enough that it makes a difference.  So this week we started dosing beforehand.   Friday morning I was patting myself on the back for dosing him BEFORE breakfast....until he checked his blood for lunch.  A whopping 401!!!  WHAT??  Oh yes,  that ever so annoying aspect about diabetes:  I CAN WORK MY BEHIND OFF CARING FOR J.J. THE BEST WAY I KNOW BUT IN THE END..... THE RESULTS ARE TOTALLY OUT OF MY CONTROL!!!   A bright note, however, is that since we've been doing this his numbers seems more in range....however we are seeing more lows. The other observation we noticed is that with the birth of our son last year I've been less in control of J.J's diabetes than I've ever been.  It was hard at first to relinquish control....I was very fearful...but I soon learned that they could "manage" without me as I focused on the issues facing our youngest.  They did manage, but I think it's time to get my "game face" on....mainly by recording keeping.We haven't kept records for J.J. for quite some time.  I used to download his meter, and check his numbers quite often.  I watched trends and made many adjustments.  So, this week I got out the computer program and spent and hour.....TRYING TO GET THE THING TO WORK WITH OUR NEW COMPUTER.....no success.  My "extra" time is so limited....so to work on it that long and get NOWHERE......sigh!!!  I'm hoping to get it up and running again, but in the meantime I realize I need to start at least getting his numbers down on paper.I've also spent time this week researching good kitchen scales.  We're about due for a new one....we own a cheapy Target clearance scale.  I noticed it was off when I tried to ship a package this summer.  I'm trying to get one that will give me the carbs to foods...one of the smart scales.  I'm not sure which one is the best for our purposes.  I posted on a forum but only got one response.  Hoping to get that nailed down soon for more accurate carb counting. Finally.....we're preparing to get J.J. back on the pump.  We talked about it with him a few weeks before we went to the endo.  Our original plan was to do shots in the summer and pump in the winter.  But he absolutely did not want to put the pump back on a couple years ago.  So this fall I asked him again what he thought.  He was open to it and after our endo visit it looks like we'll go back to it for a bit.  However, to do that I need to (re)educate myself on the pump and and get some charting under my belt.  I've taken my notes from Pump School and "Pumping Insulin" with me to the gym the past week to refresh my memory.  J.J. has been sick for the past month or so, and last week he had a bad chest/croupy type cold, so we wanted to wait to put the pump on him....to get proper readings and such.  Our endo gave us the numbers we need to get going again....or at least to start with.As much as I know all of this is necessary and good for J.J.'s health.  I wish there was a good balance.  To manage his diabetes well without having life swallowed by...... managing diabetes.   I wonder if there is any hope of that happening?  Oh well...for now....we'll forge ahead!!:)        [...]



Our Bon Jovi-esque Endo Visit

2011-12-01T21:00:27.917-06:00


As J.J. and I walked through the corridor from the clinic to the parking garage it all began to sink in.  Her words.... SHOT right THROUGH my HEART.  As my mind said those words the Bon Jovi song came popping in as well.....

A shot through the heart
And you're to blame, Darling,
You give love a bad name..
                 ~Bon Jovi


As I sang the song (not out loud!!) the next line hit me.  Yes, that's what she was saying.....YOU'RE TO BLAME!!!!  She was trying to get to the bottom of J.J.'s ever rising, worse than it's been since his diagnosis A1C.  She asked if we dose before or after meals.  Then it dawned on me.  I had been working on getting J.J. to come find me after he ate so I could dose him.  As I explained that to her she said....."It's not his fault.  Where are YOU when he eats?"   OUCH....that hurt!!   We talked a bit more, but in essence she was saying it's our fault and we need to do something about it.  Just a friendly reminder that 95% of diabetes care is placed on the parents' shoulders!!

Then the last line of the song began to sink in....YOU GIVE LOVE  A BAD NAME....yes, I do...thank you very much.  I now see my form crushed by the weight of a semi being peeled off the parking garage floor....thin as a piece of paper.  I have no excuse.  His care...his diabetes care... is our responsibility....well, mainly mine since I'm here 24/7/365.  But I'm one to take on a challenge....to figure out where we need to improve and forge ahead......


....after I have a good cry !!

 (actually I'm trying not to cry....it always gives me a sinus headache.....so I'm refusing, yes REFUSING to shed tears...for now!!)



He's Back From Camp!!!!

2011-08-25T11:32:21.029-05:00





J.J. made it home after dark last night.  He was super tired and happy to be home.  He said he had a good time, but when asked if he wanted to do a whole week next year he said "No, not really."  It's an hour and a half from the camp to our house, so by the time I got to him he was done telling his stories....sniff sniff!   He liked the pen needles the doctors used, but still doesn't want a pump.  He got a load of "goodies" from sponsors, and came home with a tie dyed shirt he did in crafts.  Sorry....not too much to tell....maybe I'll get more out of him at some point.....but I doubt it.   I'm glad he's home!!



News from CAMP!!!

2011-08-23T15:25:02.373-05:00

This afternoon I nearly jumped out of my chair when I was checking my phone for new e-mail.  Molly had sent me a picture of J.J., but my phone was taking FOR.EV.ER to download it.  I couldn't wait.....I ran to the computer to see MY BOY!!! 

(image)
He's pictured with Dixie, Molly's Diabetes Dog!!  He says he wants a dog like Dixie too!:)


He looks so good...doesn't he????  Well, I know I'm way biased!!  But he does look happy.  Molly said he's having a good time.....by the looks of that smile I believe her!

Molly helps out at the camp and said she'd try to find J.J. when she was there.  I'm thankful they finally got to meet.   Over 2 1/2 years ago Molly sent us supplies for J.J. as he was starting on the pump.  A HUGE blessing......and now this!!  Thanks again Molly for making my day much brighter!!!  






He's At Camp!!

2011-08-21T18:26:30.386-05:00

As we approached the check-in lines J.J. said his stomach hurt and he didn't feel good.  I asked him if he was nervous.  He said he was.  His face was white and I had visions of him vomiting on the grass right there in front of the entrance.   But we got to the line and he began to listen to the chatter as kids were introducing themselves and talking about their diabetes, when they were diagnosed, etc.  I could tell he was easing up a bit.We got through the next line where we let the doctors know what his dosages were then headed for his cabin.  His head cabin leader was diagnosed at 22 months!!  He's been at the camp for 14 years!  Plus he plays the guitar....something J.J. told me this morning he wants to do. We then spent the next hour or so walking around the camp...getting J.J. acclimated.  He wanted to head to the river...which includes a steep hill....but he felt low.  We had already given the cabin leader his poker, etc.  So we headed back to the car to get his diabetes bag.  He was 54, so we gave him a juice box.  Before we knew it the time was gone and J.J. headed to his cabin while Jason and I headed to a new parents meeting.In the meeting they tried to ease all our fears....that there is plenty of staff....."probably more than the Hudson Hospital"....the camp director joked.  I wanted to cry.  Not because of being fearful...or that he wasn't in good hands.  Stuff like this doesn't make me fearful.  God has J.J....I know that.  What made me want to cry was her comments that we can go home hit DQ on the way and not have to count carbs, we are on the front lines all the time...finding test strips EVERYWHERE, carrying a bunch of fruit snacks in the bottom of our purses, getting up at 2 am......basically reminding me that my son has diabetes.....and we can go home and forget about it....take a break from it.  That I am dropping my kid off at a camp....not JUST to be a kid and have fun....but a camp designed and equipped to work with diabetes kids.  DIABETES!!! Honestly I don't think much about his diabetes.  It's a part of our daily lives.  We've adjusted.  We live with it....but it doesn't impact me like it did in the beginning.  Actually I'm happy to keep it out of my daily "conscience"...but when she was speaking it was a small blow....another reminder.....MY SON HAS DIABETES.  I guess I need to tell myself again...."YEAH...well....so what?" I suppose I coulda skipped that meeting....OH WELL!!  We were walking out and saw J.J. with the rest of his cabin mates.....gave him a big hug and left.  I was thankful we took him to two other camps this summer....I think that will help him adjust.  He knows how hard the first day is...at any camp...and that once that day is over it gets easier!!!Jason and I talked about that maybe we should've signed him up for a week instead of the half week, but it's a trial year.  If he really wants to go next year we'll have to start a monthly fund for it.  We'll see how he likes it!!:)  Three days without diabetes......here we come!!:)[...]



CAMP!!!

2011-08-18T14:54:34.614-05:00

The time has come....J.J. is heading to Diabetes Camp on Sunday!!  We decided to only do the half week since it would be his first time away from us, and it's pretty PRICEY!!  I'm excited for him, but at the same time a bit worried.  I hope he doesn't do a last minute "freak out" and want to stay home.  He's been to two other camps this summer, but we've been there to help with his diabetes.  I do know he is excited to finally meet some other kids his age that have diabetes.  I really hope he makes a friend or two.



STILL A DIRT PIT MANIAC.....

2011-08-04T23:42:37.172-05:00

As you can see.....he still loves to play in the mud!!!  Shots are here to stay!!



Why Was This Child Born Blind?

2011-12-01T21:01:01.809-06:00

This month is an emotionally charged month for me. We've gone through a baby dedication for our youngest, a baptism for our 13 year old, an anniversary celebrating 19 years of wedded bliss/perseverance....(hey, I'm a realist, marriage isn't always bliss filled...sometimes it's "stick it out" filled.) In a little over a week I will graduate my first born from home school, and two days later watch her run her first marathon! I have shed many tears in the gym. All tears of joy and amazement. On Sunday, though, our pastor preached on disabilities from John 9:1-4, and I shed more tears.... tears of healing. Just when I think diabetes has been shoved back in my brain, not even detectable....Pastor Piper has to go and preach on children and disabilities!!!

Here are the links to the sermon...I'm trying to embed it here, but I'm not sure it will work!

Why Was This Child Born Blind?

If you have time to watch, listen to , or read the sermon I believe it will be worth your time....especially if you have a child with disabilities or a disease, or know someone who does.

Pastor Piper captured my attention from the start with this line:

"One of the hardest things in life is the suffering of children, and the suffering of those who love them—especially when that early suffering turns into a lifetime of living with profound loss."

Yes, I can say J.J.'s diabetes is one of the hardest things in my life.....and yet....

"We want our lives to reflect an unshakable joy in the Lord that allows us to embrace a life of suffering in disability for His purpose and glory. We want to shout that life with a disability and with Jesus is infinitely better than a healthy body without Him."(Piper reading from the Disabilities Vision Statement)

There is so much in this sermon....I would love to unpack it for you....but I'd botch it up...plus all the kids are sitting in my room waiting for me to finish....ha!!....so.....go listen to it!!:)

I will say.... our family saw more heart healing this weekend for which I'm thankful!! I'm also thankful for Pastor T.R....who, through his counsel led us to Bethlehem where we have found grace filled, gospel infused teaching. Thank-you, thank-you, thank-you....and praise GOD!!:)

I'll end with the last line from the online sermon text:

"May God give you eyes to see that the display of his works in his Son’s suffering and your suffering and your child’s suffering are all expressions of his love."



Summer recap...

2010-09-24T16:55:05.429-05:00

It's been awhile since I've updated ya'll on J.J. and how he's doing. Having spent the past 5-6 months "nesting" my body is finally saying "rest" until this baby shows up. So I have some time to share a few thoughts on the diabetes front.

Summer on shots went incredibly well. J.J. says he never wants to return to the pump. He absolutely hates it. But we tell him, that might change sometime when he's older. We saw the endo the beginning of September and his A1C was the same as it was in May and if we compared his A1C to the previous summer on a pump it was almost a point lower. So.....control isn't the issue.

He started giving himself shots this summer as well. We draw it for him, but he gives it to himself.

Not having the pump has relieved some of the night time stress my husband feels. He does seem to sleep a little better at night. That's not to say we don't still have night time issues. Our nemesis time of "day" has always been overnight. But at least he can get longer chunks of time to sleep.

One issue we encountered this summer was J.J. trying to purposefully go low so he could get a "treat". One day I saw him repeatedly checking his blood, then disappearing, then checking etc. I finally asked him what was going on. He said he was so frustrated that he was in the 200's and he's been riding and riding his bike in hopes of going low. I was like "Whoa, dude....seriously?"

We talked to our endo about it a little bit. The problem is that we don't offer sweets for snacks. He gets sweets, but not on a daily basis....when he gets a snack we direct him to fruit, or graham crackers, or something healthier. But when he goes super low we offer fast(er) acting carbs...candy, juice, popsicles...etc. He wants those things DAILY...as any kid would. The endo was pretty good at talking directly to J.J. and letting him know what he was doing was not good at all. She suggested we offer non-fat milk....a little less "appealing" to him and would encourage him to not PURPOSELY go low.

Well....shortly after this visit J.J. began to go frighteningly low after EVERY meal....without even exercising!!! It began to concern me that he may be developing a secondary condition like celiacs or gastroparesis...where the stomach is really slow to empty. We were increasing and increasing his carb ratios but still seeing the lows. So far we've seen some improvement, but it's still in the back of my mind. His next appointment is in January, where they'll do a full blood workup...celiacs detection being one of them. For now we'll just keep a watch on his symptoms and the lows and if they get worse we'll have to go in sooner.

While at camp J.J. met up with a boy who was caring for his diabetes himself. It was interesting to see how quickly J.J. was drawn to him. I know someday it will be really nice for him to find a friend or two with diabetes.

Well, that's the summer diabetes recap!!



Insurance Melt Down.....

2010-07-21T15:25:13.391-05:00

Being self-employed for the past 12 years we understand the trials of finding insurance that we can afford. Over the years we've generally increased our deductible to afford the premiums. When our premium hiked up over twice it's "normal" hike this year, my husband called to see if there was anything we could do. Unfortunately with J.J.'s diabetes the options are limited, or extremely complicated. We decided to stay in a holding pattern until after the baby came and we had time to really evaluate all our options...especially in light of the new laws.So you can imagine....well maybe not.....being prego has a lot to do with this story.....my total distress when I opened up a package from "our" (I use that term loosely since we don't even know this guy....he was assigned to us we think!)... insurance agent which had a cover letter stating that we needed to fill out and sign all the highlighted areas and mail it all back with a canceled check ASAP. I was in a little mini-shock. I was thinking Jason HAD to have called this guy....we wouldn't get a packet like that without a call from him to move forward!! As I thumbed through the packet I was flooded with thoughts of CHANGE......and all that means with J.J.'s diabetes......will he need new insurance, what about all the prescriptions? My mind didn't shut off with all the foreseeable HASSLES that would ensue with a change in insurance. I was... to say the least... OVERWHELMED.....and in tears, thinking...."Doesn't he get this? Doesn't he know that I can't handle this change right now? Doesn't he see that I will take the brunt of this change, and right before a baby....there's no way I can do this....."O.K....so yeah....I will admit the tears flowed quickly mainly from baby baking, family, & life STRESS....(it was 4-H entry day.....any 4-H mom would understand the STRESS of that!!:). But I was literally bawling. Couldn't stop crying. I did try to call and text Jason, but knew that if he didn't answer he was in a meeting he couldn't leave. So I began to look at the packet more closely.Some of it didn't make sense. The agent had highlighted the date of renewal which is 6/1/2010, and another line that made it look like we didn't have insurance. But I knew for a fact that our insurance is automatically renewed yearly.....said so in fine print....we just needed to ignore the letter.....which we did. But the way the guy highlighted certain aspects of the letter(dated April 2010).....it made it seem like we were insurance-less.The other weird thing was that the agent filled out a good couple of pages of the application FOR US!!! Some of it was untrue. Like the very first question is : The applicant and/or any person to be insured has or ever had any of the ineligible medical conditions? The agent circled "N"......well, a quick glance on the insurance website of ineligible medical conditions shows diabetes mellitus as ineligible!!! Another question asked if we'd ever had coverage from this company before......he stated no, but we have had coverage!! There was so much in the "packet" that didn't make sense for our situation.....it's not a simple look at premiums & deductibles....we have to evaluate the coverage in light of J.J.' specialist visits, his lab work, his prescriptions, etc.So....anyway, I decided to move on with my day....when Jason called I asked him an indirect question about insurance. He said he hadn't thought about it since he looked at it months ago. I replied, "So you haven't talked to any insurance agent in months, and especially in the last day or two?" NOPE was his answer. I e[...]



Shots vs. Pumps: On trusting YOU!!

2010-07-11T10:27:10.988-05:00

Recently we left a really toxic "system" that subtly encouraged us to abandon all trust in our ability to make wise decisions on our own. They believed that we must follow the advice of the leaders or we were doing it WRONG....when in fact there was no right or wrong. And if we, with our own God given "helper" (read Holy Spirit), made a decision we were at peace with before God, went against what this particular system adhered to, we were ostracized, criticized, and generally looked down upon.

This week I realized that there are many "systems" that do this. Anytime one adheres to a certain viewpoint there is a tendancy to be OVERLY militant in pushing that viewpoint on others. As I began to prepare mentally for this baby I was thrown back into all the WARS going on in the child raising/babydom realm. The article, Cribs Vs. Beds: Parenthood's all-out war, had me laughing and nodding my head (oh....and looking up words in the dictionary!). But it also had me thinking.....Is it this way in the diabetes world? Are there two camps: the Shots and the Pumps? Does each believe that one is exclusively right and if you (making wise decisions) decide to manage differently then you're ostracized...looked down upon?

My own experience has been that a LOT of bloggers are pump users. And they LOVE their pumps....name there pumps, talk to their pumps, some even "endorse" certain pump brands. But are they MILITANT? Do they look down, ostracize shot users? Think shot users need to be "converted" to their "pump think"? Most (that I've encountered) are not militant.....they just love what they love....and are doing what is best for them and their health.

Maybe I am naive...or maybe I don't get out much....which is very true....but if my experience is the "norm".....I hope it stays that way. I hope the SHOTS and the PUMPS always maintain a sense of grace, and understanding that in the diabetes world(at this time in history) there is not a right or a wrong. There is only: what works for you!!

Which leads me to my main point.....TRUST YOUR INSTINCTS!!! Don't listen to any one particular "group think". Yes, listen to the viewpoint of your doctor, but also realize your doctor is NOT in the trenches with you day in and day out. If you are intelligent, educate yourself, and are actually caring for yourself (I'm not talking to the people that ignore their diabetes.)......you will know what is best for you at that particular time. And what is best may change! You may go from shots to pump to shots to pump. Or maybe someday SOON there will be a third or fourth option.....who knows!!

Finally, if you are surrounded by people/doctors/outside voices, that tell you your way is absolutely WRONG, and are NOT gracious......WALK AWAY.....find another doctor, don't read those blogs, get support that isn't so militant. Again, I haven't experienced this in the diabetes realm, but some may have.....some may have a doctor so bent on pumps that if shots is the way they manage best then they may never get the real support needed.

My hope is that there is NEVER a war like the cribs vs. beds. That we can trust our instincts, love what we love and feel works best, without being militant but full of grace. Hugs to everyone in the trenches making these hard decisions!!!:)



So far.....

2010-05-25T20:29:34.364-05:00

.....I'd say our little trial back to MDI is going good!!:)


(image) (image) J.J. is loving the freedom of being able to go out to his dirt pit without having to mess with his pump. It has given him such a sense of freedom I didn't anticipate. I guess I never thought much about how much of a "pain" it is for a little boy to always be "bothered" by an attached medical device 24/7.

One HUGE positive of MDI is that my husband gets a much more restful sleep. We worked extensively with our endo to get J.J.'s nighttime numbers to stabilize on the pump, but we had all resigned to the fact that it wouldn't be possible until he was older. On the pump Jason was getting up 3-4 times a night most of the week.....rarely just once or twice. Since switching to shots he only gets up once or twice a night. A bonus to all of this is that we've seen incredibly good overnight numbers so far.

Another positive is we don't worry so much when we go somewhere that the pump or site will malfunction and I'll have to get home to fix it. When he goes high on the pump we start thinking is it this or that or the other or ???? SO MANY VARIABLES on top of the "normal" diabetes variables. When I'm gone it's harder to troubleshoot. So we both ended up being a lot more relaxed as we stole some time away for ourselves last weekend. (As another bonus.....Jess thought it would be awful switching just before we left town, but she was pleasantly surprised and noticed her stress levels were greatly reduced as well.....and that NIGHT TIME WAS A BREEZE compared to the pump!)

The downsides to MDI so far are......

The shots sting sometimes...especially Lantus.

One time while we were gone J.J. wanted to eat and Jess was off to one of her functions for a bit......so he felt slighted that he couldn't have dinner until Jess returned. This will be remedied soon as the other girls pitch in. He had eaten lunch 2 1/2 hours earlier, and he wasn't low.....so we weren't too worried about him starving!!:)

The last "downside" I'm not sure whether it's kind of a positive as well. The "downside" is when he wants food at odd times.....lots of snacking......or when he wants to add more carbs to his meal that we've already dosed. This may seem like an inconvenience because we hesitate to give another shot for the extra carbs.....but when we think about it.....does he REALLY need it? Is it worth it? On the shots we have to contemplate whether he should have that extra piece of ___________. That is actually a good thing.

So......all that to say....we'll keep going for now!:)



Practice, Practice.....

2010-05-21T13:50:32.466-05:00

When we asked J.J. this morning what it was like not wearing his pump, he jumped in the air and exclaimed......"I'm free!!!! I feel like a real boy!!"I expected the "I'm free".....I didn't expect the second line. It made me realize how different he must feel all the time. So....I'll have to add another positive to MDI!!:)This morning I began teaching the rest of the family how to take care of J.J. on MDI. When J.J. was first diagnosed they were all really too shocked and scared to want to learn. We didn't push them, but hoped they would step up. Eventually they did.....to a point of wondering if it was too much!:) Today they jumped in.....no fears(o.k. a few!)......but they have much more confidence now that they could give a shot without really, really messing up. I had them practice using an old Lantus vial, used syringes and a clementine. Granted they can't pinch the skin of a clementine, but I had them simulate the effect. I also wanted to make sure they understood what calibration was on the syringe. I would throw out a dosage amount and ask them to draw it up for me. Thankfully I did that, because both of the girls thought the first line was "one" not "zero". So they would have been a unit off!!J.J. even wanted to give it a try. I drew up the dose and let him inject it. Right now he's a little clumsy, being he's only 7 and his dexterity isn't quite what it will be in a few years......but I think he could do it. I don't think I'd let him draw up the insulin yet, but we shall see! For now he's where he should be.......out in the dirt pit......FREE...to be....a REAL BOY!!!!:)[...]



Decisions, Decisions....

2010-05-20T20:33:49.997-05:00

Making medical decisions can be so stressful. Maybe it's because we often don't know what course of treatment truly is best. Which route will be better in the long run.....or even short term. Jason and I daily make decisions and judgment calls concerning J.J.'s care, but today we decided to go pumpless and give shots a try again.This morning we had J.J.'s endo check-up. His A1C was a titch higher, but nothing to complain about. We went into the appointment knowing we would ask the Dr's opinion on going back to shots for the summer and getting all the details/prescriptions we needed to give it a try again. She stated that many families here, especially ones that own lake/cabin property end up switching to shots in the summer. With the heat, sand, and water the pumps don't make much sense.Granted we don't have lake/cabin property, but we might as well. J.J. finally filled his dirt pit with water and we started the daily routine of taking off of his pump and the constant showering. It's also warmed up....so even if he does have his pump on the exposure to the heat makes the insulin less effective and/or predictable. Every time we take the pump off it seems to get air bubbles in the tubing, so we have to prime it, plus his infusion sites get "gritty", making it hard to get the connections to work properly without ripping it out.I think it would be one thing if J.J. were a screen or book junkie. His days wouldn't involve tremendous amounts of dirt and water and he'd probably stay inside where it's cooler, but right now and for most of the summer he's around dirt, heat, and water. It's just the way it is.The other major factor in our decision was that with him on the pump we go mindless. We RARELY evaluate numbers or trends or anything until that 3 month endo appt rolls around and we wonder how he's doing. I know even on the pump we should do that, but we just don't. When we were forced to log on MDI we tended to care for him better.So the decision was made and we jumped in fast. The endo gave us a sample of Lantus so we really didn't have to invest any money in this trial run. I was all fine with the decision until I had to give that first shot of Lantus this afternoon. I forgot how much it stings compared to the Novolog. He teared up and asked me "Why? Why do I have to go through this?" If that doesn't make a Mom's heart prick....man alive!! I tell ya....where's the Kleenex!!?? I explained that we're just trying it out again...... to see how it goes. See if he likes it, if we like it, if he's more stabilized, etc. Yeah, but he doesn't care anything about our reasoning...he cares about pain!!!!And there began the list of the cons of going to shots.......the pain involved....instead of getting poked once every three days it's back to 4-6X's a day. And what about the other family member's involvement.....only our oldest can give shots......and they'll have to do the math now....the pump won't figure it out for them. Our anniversary is in a couple of days.....we wanted to sneak away....how will that work with J.J. on shots? He's only been on the pump when we've been gone!! So many more details flooded my brain.......grrrrr!!Sooooo.........Who knows??? This decision to go back to MDI may only last a week.....or 2 days if my emotions have any say in it. But I know we have thought long and hard, and for now we'll give it another SHOT!!(Pun intended!:)[...]



Floating......

2010-05-14T12:01:00.614-05:00

I can always tell when an endo appointment is just around the corner. I can tell because something always goes haywire with his numbers or we do something really incredibly dumb that we have to explain to the endo. This time it was something really incredibly dumb.

Wednesday night after the baptism service at church J.J. pulled on my shirt and said, "Mama, they're serving root beer floats."

I was busy chatting away with friends we hadn't seen in awhile, but I managed to say my typical,
"Well, check your blood, Bud."

I vaguely heard the result.....low 100's.....good number...o.k...."You can have a root beer float, bud."

I was fully expecting him to get in line himself, but he was patiently waiting, because he even knew that carbs would need to be counted!!

While still chatting away we went through the line, grabbed our root beer floats, ate(or is it drank?) our root beer floats, etc. But while I was chatting I kept chanting in my head, "We need to dose for that, we need to dose for that. Is Jason going to do it? Jason, he'll do it.....but he's talking, too. We need to dose for that." (As a side note....we've both forgotten to dose J.J. after meals lately....and every time we feel like total clods!! I finally begged J.J. (as well as the other kids) to use their young, fresh, non-pregnancy brains to help me remember to dose.)

Time went on, and J.J. wanted to play basketball in the gym with the other boys.....there was my chance to break away from the conversation to make sure he was dosed. He was!!! PHEW!!! Jason had remembered. All's good!!!

But lets back up a minute. This whole time I'm thinking....."Wow, regular pop and ice cream....this is gonna be a doozy to treat....". I walked through the line oblivious to what the church was serving.....(in my defense I had quite a few people coming up to me besides the one conversation I was in.......so there were a lot of distractions....but really I have no defense because his care is in my hands!!:()

When we get in the car Jason informs me that there were DIET root beer floats being served as well!!!! DIET?????? If ya'll know the carb difference between regular and diet you know the GASP!!!! that went through my head. Jason said he THOUGHT J.J. took a regular so he dosed for the regular.

I guess I don't need to go into much more detail....J.J. had indeed taken a diet....and we know this because from 10 pm to 1pm we saw numbers in the 30's & 50's....he received 3 juice boxes and milk.....before we saw a 104!! (As a side note.....trying to dose at night while being pregnant is really hard....he's dead weight, and in the past I would lift him and lean him into my body, but with a growing belly it's not easy! Thankfully Hannah was still up writing in her journal and was able to help me!!)

So, yes, we will have to explain to our endo AGAIN that we did something really incredibly dumb!!! Unfortunately J.J. was the one "floating" from this mistake....more like "sloshing" from all the liquids we gave him!!:(



Diabetes.....forever teaching us!!

2010-04-08T10:07:44.140-05:00

The May issue of Reader's Digest arrived this week. On the cover was a picture of Michael J. Fox with the headline "What my illness taught me". I was compelled to read the article.....which was really good....but after reading it, I began to contemplate all the life lessons diabetes has taught us. Some of the life lessons I've shared on this blog, but I'm realizing that the lessons never seem to end. As I face new and difficult challenges the lessons I've learned from J.J.'s diagnosis are being applied.This week the application had to do with my pregnancy. It seems like this pregnancy is finally becoming somewhat of reality. Up until this point I've refused to let my heart even think beyond the particular day or week I happened to be in the pregnancy......losing four does that to ya!!! Even at 12 weeks when the doc was trying to talk to me about decisions that needed to be made concerning genetic testing, etc......I couldn't listen to her....and I told her as much. I was living only in that second, not 5-6 weeks from then. However, with the reality that I am indeed pregnant I am now forced to think beyond week 15!!!Seems like when you turn 40 all sorts of red flags go off in OB's heads. Like nothing is NORMAL now. Pregnancy, which is a perfectly normal thing, becomes a disease or illness. So I'm considered HIGH RISK for like.....EVERYTHING!!! And you know what? It began to FREAK ME OUT!!!!Downs syndrome, neural tube defects, preeclampsia, gestational diabetes, twins, premature babies.....yada, yada, yada.......the list seems endless. And...as a side note.... what's even more scary to me right now......THIS BABY IS GONNA HAVE TO COME OUT SOMETIME!!!! Having five children doesn't make me want to rush to the delivery room that's for sure!! I don't know about you, but I'm not fond of pain!!!So as the weight of all this came crashing down, and the absolute FEAR that gripped my heart, and the tears that were shed over possibly carrying a downs child or severely handicapped child.......my heart didn't say "No! God!! No!!" as I had with J.J., my heart now said "Lord I trust You!" And that's what I've been saying all week.... "Lord, I trust You."And instead of thinking "Oh, I couldn't have a child like that. I'm not cut out for THAT." or "What a shame to parent a child with __________." I was thinking "Wow, it would be hard, but think of how it would change us. What God could do through that." So I began to welcome it....I began to think of another "disability" as a badge of honor, not a code of shame. I can tell you with 100% certainty that I would NEVER have thought those thoughts without having gone through what we've gone through with J.J. God taught us to welcome trials, to embrace them and glory in them and see the beauty in them. Too see them as His instrument in refining us for eternity.....to make us more like Christ. He taught us that as we go through them, He is there....Psalm 23!! Lest you think I'm painting some rosy picture..... He taught us that in the earthly sense the trials can and will be HARD & PAINFUL......Yes, God is with us but we will still FEEL the flames of the refining fire!!! He's taught us to ACCEPT what He chooses to bring into our lives. He's taught us not only to ACCEPT but to be filled with JOY AND GRATITUDE. Really??? Joy and gratitude over diabetes, death, disability??? Yes... JOY!!! Yes....GRATITUDE!!! And the lessons never cease!! There[...]



Another D-Mom I love to read......

2010-04-01T13:36:23.005-05:00

I've been reading Katie's blog since the beginning of my blogging endeavors. Her son, Richard O., was diagnosed the same month J.J. was. She always seems to put to words my thoughts and feelings better than I can. Her last post was no exception. To understand where we are at......read this!!:)