I am humbled

This morning as Seth and I were in the kitchen making breakfast and lunches, I tentatively asked him how he thought the visit with Grandma and Grandpa went.  Seth looked at me and said "fine".  I said "really, because I was kind of upset".  Seth said "about the food comments?  I was getting mad about those."

I explained to him the reasons I was upset and finished with what I thought was a triumphant parenting moment.  "Your dad and I are don't want your life to be any different because of diabetes and I want people to understand that."

Seth looked at me and very quietly said "but it is mom".  I asked him how and his response was:

"My life is different because I have to have shots every day just to live.  Normal people don't do that.  I have to poke my fingers 8-10 times a day to test my blood.  Normal people don't do that.  In December, I could snack and eat whenever I wanted.  Since January, I am hungry all the time.  Normal people can eat whatever they want, whenever they want.  My life is VERY different and it is different BECAUSE of diabetes."

I blinked back tears and looked at this little man of mine...wise beyond his years and I apologized.  I told him I was sorry that I had been saying it wrong and in the process hurting him.  I stressed that it was not intentional.  I finished by saying that I want him to grow up understanding that Diabetes will be an everyday part of his life, but it does not have to limit him or stop him from achieving his dreams.  He thought about it and decided that was an acceptable thing to say, he could live with that.

Today, I was taught my most valuable D lesson by my son and I am humbled by his wisdom.

Family...

DH is uber close to his family.  This past weekend was a gun show, so his mom and dad made the 12 hour drive up so the guys could go to the gun show and the girls could go do something fun.  This is the first time we have seen family since Seth's diagnosis.  Everyone was excited, because it is always a fun time when Grandma and Grandpa come to town...and this time Grandma and Grandpa brought a surprise for Seth.  His cousin Hunter.  They are very close in age, only a couple of months a part, and true buddies.

Saturday, the guys got up and went to the gun show, girls went and got pedicures so that we didn't clear out the park next week with our icky winter feet once we donned flip flops. 

But...Saturday evening when we had Lasagna (Seth's favorite meal) for dinner (1 cup or 1/12th of a pan = 32 carbs)  I heard this: "Now Seth, just because you CAN have 60 carbs, doesn't mean you HAVE to.  If you have less carbs, you won't need to take as much insulin, and in the long run that will be a lot better for you.  Really you should just be eating the salad."  My mom antennae were at full mast.  I explained that Seth can eat anything he wants, including lasagne, we just have to dose the proper amount of insulin.  I also explained that not eating enough of a balanced diet will cause ketones for Seth...Ketones = not good, it means the body is breaking itself down for energy.  I added the hairy eyebrow for effect and dished my son up, and when he asked for another 1/2 portion of lasagne, I told him yes, because I had anticipated that and allowed enough insulin for it.  And Seth was really excited when he got to have 6 of the mini cream puffs for desert.  6 equaled 15 carbs.  AND bonus, when bedtime came around, Seth was low, he got to eat a few more.  Take THAT D!

The next morning, I made a nice pot of homemade rolled oats for breakfast and helped Seth figure out the proper dosing for that.  He also had a nice thick piece of ham with it, so he would have some protein.  Again, I heard it and AGAIN I explained.

When dinner came around and it was time to eat our pork roast with mashed potatoes and gravy...Seth was again given the lecture, this time it was thrown in that he needs to just learn to not eat sugar or carbs so he can be healthy and live longer.  I had HAD it at that point.

I understand that the family is concerned about Seth and that they love him and want him to live a long and healthy life and so I get that these comments were coming from fear.  Mark and I are working hard so that Seth doesn't feel different.  We are not going to sit there and eat something in front of Seth that he cannot eat.  That would be mean and unfair.

Sigh...I thought I had done a good job of explaining and educating our family about D.  I need to do more...after Walt Disney World.  I guess I won't post any food pics.  :)

D: Techie Style!

I have alluded to it a couple of times, but I will now say it.  I am a techie/gizmo/gadget girl.  I come by it honestly.  My momma taught me well.  I still have my original 32gig iPod (with the wheel), she works great and hasn't failed me yet.

I mentioned last week that I had ordered the new Telcare meter to eliminate the log battle with my son.  Well when I got home from parent/teacher conferences yesterday afternoon, it was sitting on my porch waiting for me.  So we are now managing D, totally Techie...I am sure none of my friends or family are surprised.  :)

DISCLAIMER: These are my own thoughts and opinions of this device.  These are my first initial thoughts and experiences, I will write a new post once we have had a chance to more thoroughly test this out in our rural market.  Please be mindful that we live in RURAL Alaska and as such have unique conditions that come into play with a product like this.

We ripped into the box and excitedly read the directions that said:  Plug in for 12 hours before first use.  I knew it had a rechargeable battery, but I was anxious to try it out.  We plugged it in and watched the screen light up. Ooh...pretty, shiny...fun.  :)

The directions also said when you first turn the Glucometer on, it can take up to 15 minutes to find a cellular provider.  Alrighty then.  The 3 of us took up positions around the breakfast bar and waited for the X that was on the cell bars to go away.  And waited, and waited, and waited.  We did some chores and checked again, nope.  Cooked dinner, nope.  NOW...I need to say, this was one of my fears given that we live in Alaska.  We don't have a lot of the cell providers that the lower 48 has.  My son suggested that we give it a rest and let it charge overnight before we started worrying too much.

When I got up this morning at 3:00 am to check Seth's BG, I had a hard time falling back to sleep.  Finally at 4:00, I came downstairs to check.  Still a big X.  Drats.

One of the issues that I have had, is the toll-free number does not work from Alaska.  Telcare is working on fixing this, but for now I have been given a cell phone number as well as the email address  of one of the managers, who has been AMAZING.  So I decided to email my manager friend and let her know of my cellular problems and to ask if she had any troubleshooting ideas.

I went back to bed and when I came back down at 6:30, I had an email waiting, telling me they had checked for cell phone providers up here who would be compatible and there were plenty.  She then asked me to bring the meter to work with me and she would call me on my lunch hour so we could troubleshoot.  When I went to put the meter in my bag, I glanced at it and saw that the X was GONE!  In it's place was the name of one of our local cell providers.  OHMYGOSH.  ITSWORKING!!!  I ran upstairs and tested my son again and we anxiously watched the tester:  DATA SENT SUCCESSFULLY. 

There is a computer portal you can access and a free app that I got for my iPhone to check the results, here are a few pictures of the iPhone app:

This is a snapshot of Seth's day.  Now...I am supposed to be able to check this on my phone, so I know what his tests are during the day.  I work in a concrete school and do not get great reception.  Even so, I was home for about an hour before my results updated this evening.  I will keep track of this as I also want to use this as a tool for when Seth stays the night at friends and for when he goes to Scout Encampment this summer.  I was able to access the portal from work, so I still knew what his numbers were, but I may not always be around a computer and I ALWAYS have my phone with me.

When you test, you attach an activity to the testing time, before breakfast, after breakfast, fasting, snacktime, etc.  We had a couple of oopsies today with Seth forgetting to attach the proper activity and you can't edit once the data has been sent.

On the iPhone app, you can also enter the insulin injections as well as the carbs consumed.  Which is nice.  But I am confused as to why those are not options on the tester, it wouldn't be that hard and then all the input would on the device.  It is a little bit of a pain to have to use the device and the iPhone to log (since we invested in this to do away with paper logs).  They have a forum and they ask for feedback, this is something I plan to bring up.

Tomorrow will be his first day at school with the monitor.  I'm anxious to see how it goes.  I'll keep you posted.  :)

Techie's

A few weeks ago, I heard tell about a new Glucometer that was hitting the market by Telcare.  And the abilities it promised appealed to my techie loving mother’s heart:

Abilities like:

Upload BG’s to an online database

Create charts of BG’s to track trends that are printable…can you imagine how much that will impress your doctor at your next visit?

Having user created accounts so doctor/provider can access the database and monitor patients BG, if the patient grants access.

Texting my phone when a BG is uploaded

I was intrigued and began researching.  For some reason logging is a battle with my son.  It doesn’t seem like it would be that hard, but he will even pretend to write his numbers down and NOT.  Right now, while everything is so new and his life has changed in so many ways…this battle isn’t worth it to me, not if we can purchase this technology to stop the battle…not to mention it will save his overworked school nurse from having to scan and email me his numbers every day…and it will make testing/logging in Disney World so much easier.

If you sign a year contract, the meter is $100.00 and the strips are $35.95 for 50, this is before insurance reimburses me. (I am currently paying $128.00 as a COPAY on 300 strips).  This is a huge cost savings to me and my insurance company.

There were a few glitches in the process, but Telcare has been in personal contact with me to work them out and I feel assured that this is definitely not the norm.  They are a very new company, just opened for business this month.  There are bound to be some growing pains with that.

So yesterday, I did it.  I took the plunge and I ordered the glucometer and 200 strips.  It will all be here on Monday and we are so excited.

Last night I downloaded the free App for my iPhone.  Using this app, I can add Seth’s insulin amounts/times to his logs as well as his carb amounts and meal times to the logs.  I wish that were an option on the meter, but I can hope that will evolve and come to be in time.

So…once I’ve had a chance to play with it. I’ll let you know my thoughts, good or bad.

In other techie news:

We had our 1 month follow up visit with the doctor this week.  The doctor and I both believe that we are entering the honeymoon phase and have backed off on Seth’s Lantus dose and adjusted his Carb Ratio to stop him from running as low as he has.  We are seeing some improvement…but what really excited me is that SHE brought up the idea of Seth switching to a pump.  Said now that she has gotten to know me (over the course of all of our daily phone calls) and seen our documentation and my involvement that she believes I will stick with this and that we are a good candidate for the pump and she sees no reason to wait a year!  I told her I was wondering about making the transition this summer since I am off work and Seth is out of school, seems like a good time to do it since we would be spending so much time together and she agreed!!!

So, Seth and I are reading information and watching videos on:

The Omnipod

and Medtronic

Those are the two pumps she is familiar and trained on.  The Omnipod is a pod delivery system so there is no tubing running from the pump to the insertion site.  The Medtronic does have tubing, but it also has a built in Continuous Glucose Monitoring System, so there are pro’s and con’s to both.  We are doing our research and have information requests into both companies.  Seth is a little nervous about it because when he asked the doctor how it felt to insert the cannula, the doctor said, like an IV.  Well, if you read our hospital post you know the IV did not go well for Seth.  I am hoping we can test each ones insertion out for him to see.  Most kids say it doesn’t hurt any worse than the Lantus shot (which is a little painful because the insulin crystallizes under the skin so that it is a slow release)…but Seth has to experience things to believe it.

So that is what we have been up to…you?

~B

Dreams Fulfilled

I have long had a love and passion for Disney.  I have been to Disneyland several times, but never Walt Disney World.  It has long been a dream of mine to be able to go and be able to share that with my children, it opened the year I was born, so we just shared our 40th birthdays.  Well, last year Mark and I decided to make that dream a reality.  We have planned virtually every detail of this trip, made advanced dinner reservations, and began our countdown. For several months we told the kids that just Daddy and I were going.  We had a lot of fun with that and they were very miffed at being left at home.  Fast forward to Christmas day and we could finally share the news that we would be taking our first family vacation....yes, they would be coming with us.  The kids were very excited and we let them help finalize some of the plans.  Tickets to Legoland were bought for a guys day, the girls are going to eat dinner with the princesses and go to pick a pearl at Epcot.  AND THEN...D joined us.  I am sure the nurses and doctors thought we were crazy, because we were all wondering how to do D on our vacation?  Would we have to cancel?  The information was so overwhelming, how would we do all of that at home let alone on a cross country vacation?

The day after we were discharged from the hospital, we met with Seth's primary caregiver and she quickly dispelled any qualms we might have had.  We told her our concerns and she quietly listened and when we were done she very kindly said:

"How exciting!  I think Alaskans don't get out very often and a trip like this is important.  We need a break from the dark and the cold and we don't have a lot of food options here.  So go on your vacation and do what you want and eat where you want.  Do the best that you can at figuring his carbs, take extra insulin, take your cell phone and take my phone number.  Your phone will work from Florida and we will manage this."

I fell in love with her right then and there.  I am so grateful that she GETS how important this is and that Seth wants and needs to feel as normal as possible while we are there.  We are not going to be total gluttons, but we will allow him a little bit more leeway to enjoy himself while on vacation....after all, this is not something we do every day.  :)

They just updated park hours today and one of the days that we are there, Magic Kingdom will be open until 3 a.m.  We all wanted that to happen so bad, because only resort guests get to take advantage of that, lots of families do not do it because their little ones fall asleep, a lot of times you can just walk off and right back onto a ride and then when you are walking out of the park, you can get pictures of the castle, etc. with just your family because the park is pretty much deserted...I AM SO EXCITED ABOUT THIS!!!

Be still my beating heart, I am so excited to fulfill this dream.  We will begin packing next weekend.  Need to read the TSA website to see how we will need to carry Seth's supplies on board with us, I do not trust expensive medicines like that to be checked.

So we are taking D on the road only 2 months in, this will be an adventure for sure.

~B

Guilty Pleasure

One of my guilty pleasures is Grey's Anatomy.  Who is anxiously waiting for the current season to hit DVD so I can watch it without commercials...ME!

My favorite character is Callie Torres.  She is strong and spunky and has a ginormous heart.  In Season 8 they did a musical episode.  Most of it was pretty cheesy  to be very honest...and I LOVE musicals.  However the episode centered around Callie and was pretty critical, so I watched.  At one point Callie (played by Sara Ramirez) sings this incredible song...and it just  grabbed my attention.  Her performance was amazing and I was drawn to it.  It is the general consensus that it is a love song, but when I listen to it, I think it fits in the context of family and the love I have as a parent to my children.  This is Sara's performance on Good Morning America...she has some incredible pipes.

The song is called "The Story" and the original artist is: Brandi Carlile.  Her video is pretty amazing too.

Here are the lyrics:

All of these lines across my face

Tell you the story of who I am

So many stories of where I've been

And how I got to where I am

But these stories don't mean anything

When you've got no one to tell them to

It's true, I was made for you

I climbed across the mountaintops

Travel across the ocean blue

I cross over lines and I broke all the rules

And baby I broke them all for you

Oh because even when I was flat broke

You made me feel like a million bucks

You do, I was made for you

You see the smile that's on my mouth

It's hiding the words that don't come out

All of the friends who think that I'm blessed

They don't know I'm in this mess

No they don't know who I really am

And they don't know what I've been through

Like you do, and I was made for you

All of these lines across my face
Tell you the story of who I am
So many stories of where I've been
And how I got to where I am


Oh but these stories don't mean anything
When you've got no one to tell them too
It's true, I was made for you
Oh yeah, and it's true, I was made for you.


I hope you enjoy it as much as I do...music has such power to inspire and touch the soul.  Think of this song from a parents/families perspective and see how the words truly fit.  My family is the most important thing to me, they are the ones who know me the best, good and bad, they truly know my story and I know theirs.  We chose to be a family before we came to earth and we make choices everyday so that we can be a family when our time on earth is done.  


I am incredibly blessed even when things get messy and this is a great reminder of that.  :)


~B

Baby Steps

Baby Steps…all over again.  You know it has been 10 years since I’ve had babies in my house and yet we are taking baby steps all over again.  Yesterday we had a check in with the Diabetes Education Center.  Despite my fears and misgivings, they are telling us that we are doing good at logging and managing D in our home.  I wish I could take credit for it, but I know that D is lying in wait and will rear it’s ugly, the numbers don’t make any kind of sense despite our best efforts, anytime it wants head.  Right now D is just playing nice too.  I don’t take that for granted.

When Seth was diagnosed his numbers were so high that he was unaware of what it felt like for his body to be “normal” and completely unaware of how a low felt for his body, he was incapable of feeling the difference between 400 or 50.  As I had mentioned, Seth’s being on the wrestling team was a huge awareness factor for us in diagnosing his D.  However the coaching staff has not dealt with a D kid on the team yet.  While we had made a decision as a family that D would have to fit into our lives, we were completely overwhelmed with learning all about D and learning what normal and low felt like for Seth, so we felt inadequate  to “teach” them how to deal with something we had not dealt with ourselves.  Seth asked to take this year off from wrestling until he was comfortable with D and we supported his decision for the above reasons.

So yesterday was a big D milestone for us.  We allowed Seth to join the Lego Mindstorms after school club.  This meant Seth was solely responsible for his D care from 2:30-4:15…no nurse, no parents (although I was a phone call away).  We planned and we talked.  A healthy snack was sent (we are so in love with Barney Almond Butter in individual packets right now, that and an apple curbs a low and maintains a stable BG for Seth).  We arranged for him to keep his tester at school and a roll of glucose tablets, just in case something really funky happened.  I sent the teacher our plan and my phone numbers…and anxiously allowed the cord to stretch a little.

I even managed to NOT call when I thought he would be walking in the door to see how it went…oh man was THAT hard.  I pulled into the garage and as the door was coming down the door to the house cracked open and Seth came and sat in the car with me for a minute, excitedly telling me about his day and how much fun he had at Lego club.  And how at 3:30 he started feeling a little funny so he went and tested and he was low (68) so he ate his snack and felt fine.  I asked if he tested 15 minutes later and he said “he didn’t…he forgot”.  I reminded him that needed to happen to make sure his numbers are heading back up.  He smiled and said “okay” and then he turned to me and said…”mom, this was a great first step”  and slipped back into the house.

WHAM!  With those words my little man had my heart in his hands.  I am overwhelmed at his courage and in awe of how he faces his challenges.  Someone told me that diabetes is harder on the parents than it is on the child and in some ways, I totally get that.  Right now, Seth just takes this as another layer to his life.  His father and I are the ones who struggle and juggle as much of this as we can for him, because he IS a kid and we don’t want D to take any more of that from him than it absolutely has to.

So yeah, today was our first baby step…but I felt like we jumped off a cliff.