FIVE Weeks Already??

Well, I actually found time to write this!

Brianna has been using the new Omnipod System for five weeks now.  So the big question is what do we think???

Well, we love it!  She really does.  There are few negatives but lots of positive.  Now to try to figure out where to start....

For those of you who don't know about the pod, it is a tubeless insulin pump.  It theoretically will work for 3 days- 72 hours- and MUST be changed.  You are given eight hours as a grace period so technically it will fully shut off at the 80 hour mark.  Which for us is not a huge deal.  I typically was changing her sites every 2-3 days anyway just to keep scar tissue from forming and the sites in general seemed to heal quicker the less time they were in.  But this is something some need to consider.  I have heard some like sites to last longer or only change twice a week, so this might not be the best option for you!  Plus it only holds 200 units, which is more then enough for Brianna but people with T1 that use a lot of insulin will have to change more often.  I know Minimed's larger pump will hold 300 units.

So as of today, she has had 14 sites changes now with 3 failures.  Yes THREE!!  Doesn't seem like a ton, but we only had like 3 bad sites when she was using Minimed for 3 YEARS!!  What happened?  Why did they go bad?  Honestly, who knows?  The first change we did, we changed it right around the 72 hour mark.  That day we had been swimming a lot.  She got out to eat dinner.  We bolused as normal, then decided to do a pod change before she got back in the pool.  Everything I thought went fine, no issues.  Then about an hour after it was inserted in was screeching!!   We call it the sound of death, because when you hear that sound, nothing can be done besides pulling the pod.  Basically it sensed there was something wrong with the delivery of insulin and shut down.  That one said there was an occlusion- meaning something was blocking the delivery of insulin.  When I pulled it off the cannula looked fine.  So I really don't know what happened with it.  Either way,  I was not happy and even more Brianna was NOT happy at all. I called Insulet and they noted what happened and sent us a replacement pod.  We sent back the old pod for them to test.  The next 2-3 pod changes were fine.

The next failure happened Saturday morning when we were getting ready to go to Austin's baseball game.  Of course we were in a hurry.  I had Brianna bolus her breakfast and about 3/4 into the bolus we got a no delivery and the pod shut down.  Again called them and they replaced it.  The next failure was two days later.   Same thing happened we had just given Brianna a bolus and 3/4 of it went in and then we got a no delivery and it shut off.  With the third pod failure I was really starting to doubt we made a good decision for Brianna. We need a reliable pump.

I really wanted to know why the pods were failing and what I could do to stop it!  I called after each failure.  They noted all the information and sent replacement pods.  They said they really didn't know what was causing the issues, but they run the pods we send back through tests to see what went wrong.  Because they sent us replacement ones, we weren't really out anything other then insulin.  Which is starting to add up with all the pods that are failing.

For the pod to be activated there has to be a minimum of 85 units added.  Again this might be an issue for some if the person with diabetes uses a low amount of insulin you might end up wasting a lot.  I have been filling her's with anywhere better 100-125 units.  I get a little paranoid about running out and having to do a change early.  Hey, you never know when she might go crazy and eat tons of carbs  LOL!

Brianna uses Apidra insulin and that was another concern of mine.  I had heard from several people that Apidra tended to clog or crystallize in the cannula after 48 hours, or with some right away.  Apidra works really well for Brianna so I didn't want to have to switch insulin. She was on Novolog prior, but has been using Apidra for almost 3 years now.  So far we have had no issues with leaving Apidra in the pump for 3 days.  We never did with Minimed either.  So that was a huge weight lifted off my shoulders.  Another thing to consider with the insulin and the pod is the pod will not start up with insulin under 50 degrees.  We leave her insulin in the fridge even after we open it- works best for us.  So I just take the insulin out 30 minutes before a change so it can warm up and we have had no issues.  So as far as insulin goes no worries there!

Podding falling off all the time!  This was a HUGE concern for me.  We have a pool and swim all the time- if it would EVER stop raining here!  Part of the reason we switched to the pod was to make swimming easier for her, so if they are falling off all the time that wouldn't be worth it.  She has swam countless times in the last month and ALL the pods have held on.  In fact they are near next to impossible to come off!  The first time she got into the pool, I told hubby maybe we should cover the pod, I would really hate for it to fall off.  He said wait and see.  So we did- again it would have been SO his fault if it fell off.  But it didn't.  She jumped in like a crazy, swam, and played rough. That pod held on tight!  I was impressed.  I will say the edge of the tape does occasionally come up from where her pants rub on it, but NO issues with it coming off.  So another worry put to rest.

If you look close you can see the pod on her right side.

Hardly noticeable. 

Removing the pod.  Here I was SO worried that it would be falling off all the time, I never imagined it won't come off!   They are obviously significant big then a little site so there is a large taped down area.  When we removed her old sites we just pulled quickly and ripped it off.  Well the first time we have to remove the pod I did the same thing and just pulled it off.  I think I took a layer of her skin off.  She SCREAMED!  OUCH!! So since then we have been using Unisolve to remove her sites.  It seems to be working well.  There is a significant amount of glue that is left on her skin.  It is quite an ordeal to get that stuff off!  For us, wiping the glue with the Unisolve pad, then alcohol and then using a dry cloth seems to work.

I think I'm going to end the post there for today...
I have so much more I want to write about.  Hopefully will post again in the next week!!

Cut the Cord

For anyone that know me, knows I am Minimed's BIGGEST supporter.  I LOVE their products.  I love that their pump and CGM are all in one unit.  It makes it so easy for Brianna to only carry around one device.  I love the ease of use.  Brianna has been on the Minimed Revel pump for a little over three years, and the CGM almost three years.  We have the Guardian and MySentry.  Seriously LOVE minimed and all their products.

BUT a few months ago we went to a JDRF event and Omnipod was there.  We looked at it and honestly I didn't think much of it.  Yes, no tubes would be nice but at that time they still only had the bigger pods, so I didn't really think much of it.  My husband and I talked a little about it in the car but it ended there, or so I thought...

Then in March, knowing swim season was coming up, hubby asked, okay I'm going to blame him for this one, have you thought any more about trying Omnipod?  WHAT?!?!  We swim a LOT during the summer.  Brianna's pump is not water proof which isn't a huge deal as she likes the freedom while swimming of not having something attached to her, but in the same sentence I must say no pump no basal.  For the last two swim seasons, I have been giving her missed basal as a bolus right before I disconnect her.  BUT do you know how hard it is to give 0.50 units when she's 70 or 90?  If I don't hours later she will be in the 200's-300's and holding there.  So it worked.  I knew what to do.  Once an hour I would hook her up and give her the missed basal as a bolus and off she would swim.  Well, then she would want to eat, back out of the pool and hook up and give insulin she needs for what she was eating.  Not a huge deal.  But it was something I was comfortable doing, I knew how to do it.  But I was the only one doing it.  Not for one second I want you to think I don't want to do it, because if it is what she needs then I will but then my thoughts were what if I'm not there, what if she is at a friends house?  I can't expect someone else to do what I do.

So with that I agreed I would call and get information about Omnipod and the Cut the Cord Program.  I seriously felt and feel like a traitor.  They were very helpful and told me that for a certain price we could get the PDM and then when it was time to refill pump supplies instead of sites and reservoirs we would get pods.  Seemed easy enough. 

I am someone though, that is under the mind set if something is working then why switch?  Her A1C for the last year has been in the 5's.  She was happy with the pump and CGM.  Why switch?  I had talked to several people that were on the pods.  I didn't want to know the good things about it- I wanted to know what could go wrong!  Some of my fears- the site would fall off all the time.  The PDM meter would be "off" from what I was use to and would cause a dramatic increase in her A1C.  Many people also talked about super high numbers right after a pod change- I didn't want to deal with highs every 2-3 days just from changing her site.  Pod size was another concern, I didn't want this HUGE thing on her.  Probably the thing I was most of afraid of was what if she hates it??

With all that being said, in March we decided to go for it.  Brianna was VERY unsure of this- really I don't think she wanted to try it at all.  We told her several times that if she hated or even didn't like it a little we would switch back right way and wouldn't try it again.  I wanted HER to feel good about the switch after all it was all about making HER life easier.

We ordered Pods in May, the next time we were eligible for supplies, and it was a done deal!  We set an appointment for the beginning of June to meet with a nurse educator about transitioning to the pod from the pump.  I probably could have done it myself but it was recommended we go so we did.

So June 6th, we went and transitioned from the pump to the pod.  It was the easiest transition ever.  We just put the pod on and took the pump off.  Because she was already on a pump there was no missed basal or that, just stopped one and started the other.  We learned how to bolus and set up the PDM.  And we left.
It was the first time in almost 3 years that she didn't have something attached around her waist.

And there it is on her back,hooked up and running. 

Next post- what do we think 4 weeks into Podding??  Stay tuned and follow my blog.....


I love reading all your comments so leave me your thoughts.  

And they're gone....

Today is the first day of school for Austin and Brianna.  I will admit I have been looking forward to them going back.  The fighting around here has definitely escalated in the last few weeks.  Some days they play so nice and other, that was the time I was counting down the days until school started.

Austin is in Junior High, 7th grade, this year.  His school starts at 7:30!!  What a change for him.  So today it was up nice and early at 6:00AM.  I hate writing that 6AM?  This is the kid that was sleeping still at 10 in the summer.  So, tonight should be interesting.  LOL.  He asked to wake up earlier tomorrow as he doesn't like to be rushed in the morning- bus comes at 6:55. The nice part of going so early is that he gets out of school at 2pm.  I think he was excited to go back and hang out with his friends again.  He was able to go last week and tour the school and find his locker.  His first 4 classes from his locker are far from his locker, close to his locker, far from his locker and then close to his locker.  He will be getting some exercise this year going up and down all the stairs. All his classes after lunch are really close to his locker.   I don't post much about him here because one he doesn't like it and two he doesn't have diabetes.  Austin is a great kid, and we couldn't be more proud of him!  From straight A's in school last year to advance classes, to the sports he plays, he is just a well rounded kid.  So for this year I hope he makes new friends, keeps friends he has close, does well in school and sports and most of all has FUN!  Oh yeah and learns too.  ;-)

Off he goes!

Brianna got to sleep in a little bit, her school doesn't start until 9:30 so I usually get her up at 8:00.  Today I got her up a little early at 7:30.  I think I'm going to like not rushing around try to get both Austin and Brianna ready.  It was kinda nice no fighting before school.  Things seemed to run much smoother.   Brianna has been SO excited and looking forward to going back to school.  She had her fabulous outfit picked out for weeks!  She is going into 3rd grade this year.  Big changes for her this year as well.  She will have a new school nurse and a male teacher.  We got to meet him a few days ago, she was a little nervous about him but feels much better now.  It was nice seeing all his past students coming down and talking with him.  For me that speaks volumes, I mean would you go and see a teacher you didn't like??  So we packed up the car, quick did a picture with her BFF, and on to school we went. 

Brianna and her BFF hard to believe they are in 3rd grade, I can still imagine them together in preschool.

  I hope for Brianna this year that she makes great friends, keeps the friends she has close, learns, feels comfortable and safe. 

I hope that one day the MySentry would link her up when she was at school.   It would make all my worries vanish.  So until something like that happens I have to trust the school will do what is best for her and she will be proactive for her care.

So until my little ones goes to preschool in a few weeks, it is just her and I.   And Courtney you are our last baby so you can slow down growing just a little....

Where did Austin and Brianna go??

Well, I won't hear anything from Brianna's school until lunch so I hope all is going well with both my kids.

I love reading your comments!  So does Brianna.  Can't wait to tell you all about how their day went!  Until next time...

School Supplies

Back to school is an emotional time for all parents.  You are either excited they are FINALLY going back or nervous or sad they are going back.  As a parent of a child with Type 1 diabetes nervousness, stress doesn't begin to describe how I feel.  Don't get me wrong I am very excited they are going back, but will also miss them terribly while they are gone. (I could and will write a whole post all about that but today supplies.)

Over the last few weeks we have been buying all Austin's and Brianna's school supplies.  We also purchased everything Brianna needs for school to care for her diabetes.

Here is what most kids Brianna's age will take back to school, you know all the standard supplies.

Standard 3rd grade supplies.

Yesterday we went and brought all her diabetes supplies to the clinic.

This all fits inside a box that sits on the clinic counter- minus the insulin which goes in the fridge.  It is there so she can do what she needs to quickly and get back to class.

This is all the supplies Brianna has at school.  The upper two bags go into the classrooms she is in the most.  The big snack bag and bag of drinks stay in the clinic.  All the other bags go to each classroom Brianna could go in.  The paper is her care plan from Children's.  The box all the way on the right is what sits on the counter.

Here is Brianna will all her supplies bagged up and ready to go.

I went over everything several times to make sure that she will be prepared.  I think she should have more then enough supplies.  Today we get to go and meet the teachers.  So wish us luck!

I am trying hard now that she is going back to school to write more.  I would love for you to follow my blog, the more followers I get the more giveaways and contests I can have.

We met the new school nurse last Friday so
Tomorrow's post meeting the new nurse....


Questions???  Comments???  We love reading them! 

Friends For Life Day 1

Brianna was diagnosed with Type 1 diabetes almost 3 years ago.  A few months after diagnosis, we heard about an annual conference that was held in Florida, called Friends for Life, by Children with Diabetes.

Last year we went to a local event they had in Ohio.  It was AWESOME!!  Brianna was able to hang out with kids that all understood and lived with Type 1. After seeing how happy she was and how much she enjoyed it, we knew we needed to make the trip to Florida, at least once for her.   Little did I know that it would be GREAT for all of us- okay I kinda knew we would all enjoy it.

The first two days of the conference were a little relaxed. Though I have heard that this is not a typical year because the holiday was in the middle. We did not go on Tuesday, but started with registration on the 4th.  At registration we got our shirts, papers and bracelets.   The bracelets are a badge of honor- green is you have Type 1 diabetes, orange if you don't- you support or love someone with diabetes and yellow if you have Celiac.  Seeing so many green bracelets was awesome, not that I like all the people have diabetes, but they all knew exactly what it feels like to have diabetes- something as hard as I try I can never full feel or understand.

Next we did, Diabetes Art Drop-In that was put together by Lee Ann Thrill.  They had lots of diabetes related "garbage" that they kids and adults could make art projects with. There was tubing, boxes from sites, CGM's test strips, vials of test strips, test strips, ketone strips a little bit of everything.   Some of the projects were quite elaborate and really creative. Brianna really liked coloring, gluing and making art projects.
Here she is crafting...

Here are the finished masterpieces  ;-)

I think Brianna was trying to fit as many puffs on there that she could!

Courtney

Brianna FFL- 2012 All made out of test strips! Dad made it for her.

Cut up tubing, test strips and test strip vials.

You will see lots of pictures of Courtney and Brianna, but very few of Austin.  He did attend with us (as well as my mom) and had A BLAST but he does not like his picture taken so the ones I have are very few.  :-(  He is 12 so I guess it all comes with growing up and I have learned to just respect it, though I wish I could have snapped a few more of him. He was in Sports Central while we made the art.  ANYWAY...

 At registration they also gave each person a pedometer and if you reached 10,000 steps you got a special T-shirt.  So Brianna went into have her eyes checked, Austin spent the time walking and trying to get his shirt- I think he got to around 4,000 and then it reset.  That happened to mine several times.  By the end of the conference we each received a shirt!

For people with Type 1 diabetes that attend the conference Retinal Screening is offer.  We took advantage of this and decided to have Brianna's eyes checked.  She was a little apprehensive, she didn't know what they would be doing.  The team that hosted this event was eye care specialists from Institute of Ophthalmology and Visual Science from the New Jersey Medical School. They did an in-depth evaluation, way more then the typical eye exam would do.  They also save all the data so if she ever, and she will, comes back to another event in Florida they will compare the results to see how her eyes have changed.

Brianna wore 3-d glasses and had to pick up a "bug" and on the other page point to which circle was coming at her.

Measuring the pupils

Checking her oxygen level

Checking her blood pressure

Checking blood pressure

Add caption

Holding really still. They take a quick picture of the eye but the data they get is amazing!

The results.

There were at least 20 pictures of each eye looking at all the different layers.

Everything looked normal

All the information.

Final test

This is a picture of the back of her eye.  They are looking at all the arteries and veins. It looks totally normal- no signs of any complications

Her eye has a birth mark on it, apparently only 1% of the population has it.  It is above where the white hand is on the screen.

The only recommendation Dr. Ben Szirth has was for her to wear sunglasses.  He said that he actually recommends that everyone does, but people with diabetes really need to.


The final thing for the day was the First Timers' Welcome Reception.  It was a chance to meet and see all the new people that came to the conference.  It was unbelievable to see everyone all connected by Type 1 diabetes.  They gave a brief overview of what to expect and a first timer from last year gave his experience of what he thought.  It was just overwhelming sitting there knowing you were about to have an experience that nothing compares to.  People will always go on vacation, but this was so much more then "just a vacation" never would you be surrounded by such love and support and people that truly get it.  And with that it wrapped up day one of the conference.  


Day 2 tomorrow--- hopefully.
I am really going to start to write more frequently.  I would love for you to follow me.  I love reading your comments and suggestions so please post. Thanks!!