Monday, July 7, 2014

Another Day...Another Diagnosis

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.


I thanked God....

He loves J.J....infinitely more than I do.
His 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 is..more. than. food!! I am sad....but today...I AM THANKFUL!!!

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

Friday, April 20, 2012

BIG D....

"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 it can be used on thinner places on the body.  J.J. didn't think he'd like 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!!:)

Wednesday, February 1, 2012

Diabetes Abortions

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 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....


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? 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 least for the purposes of killing more children.   I can't imagine life without J.J.....Type 1 and all!! 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

Thursday, December 29, 2011

On the pump again.... 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.    

Sunday, December 25, 2011

The Diabetes Christmas

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' 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 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 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!:)

Thursday, December 8, 2011

Diagnosiversary...Toys for Tots Trek!!!

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!!!:)

Tuesday, December 6, 2011

Getting Back in the Game: Evaluations and Preparations

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 success.  My "extra" time is 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 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 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!!:)  



Thursday, December 1, 2011

Our Bon Jovi-esque Endo Visit

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 figure out where we need to improve and forge ahead......

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

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

Thursday, August 25, 2011

He's Back From Camp!!!!

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!!

Tuesday, August 23, 2011

News from CAMP!!!

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!!! 

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 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!!!  

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