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Wednesday, February 1, 2012

MySentry Update and ENDO Appointment

We have been using the MySentry for about a week and a half now and we are LOVING it.  It has been a little bit of an adjustment for me. I was use to her wearing the wireless microphone in her pump pack and being able to hear everything she did.  Now it is just silence and a number.  It is a welcome change, but it did take me a few days to really start to trust that it would work.  The first few nights and even mornings I would walk down there and think, I know what her number is so what am I doing here?  I guess old habits are hard to break.
The only problem we were having was it losing signal in the night.  We had the outpost about 5-6 feet away from her bed.  But several times during the first few nights it would lose data and alarm!  It was getting very frustrating.  Our rep suggested that we move it even closer, possibly putting the outpost on an extension cord and moving it as close as we could, safely, to her.  Right now we have an extension cord that is tied to her bedpost so it is literally 2-3 feet from her.  (It is up high enough and tied tight enough that it is not a danger to her while she sleeps.)   Since doing this is it working perfectly!  At night if she beeps high, low, weak signal anything, I am alerted.  No more rushing to her bed and realizing I have let her pump alarm for hour(s).   I think my hubby is also enjoying it.  He usually does not get up with her at night, but he likes know what is going on with her, and this lets him know if she is high or low.  Do I sleep more with the MySentry, maybe.  Mysentry only helps me hear the alarms, it really does nothing to manage her diabetes.  I will say that when I am sleeping I feel better knowing that I will hear those alarms. 

Today, I gave the endo the last of the paper work I needed her to fill out for us and hopefully we will have it in a few days and then mail everything off to insurance.  I have never filed a claim with them before so I don't know what to expect.  I am hoping it is a quick process, for anyone that knows me, knows I am not a patient person  :)  Plus I really would like this done ASAP as we are switching insurance companies on the first of March. 


Today was Brianna's 3 month follow up appointment at the endo's office.  Sometimes I wish these follow-up appointments would have an end date in sight, but until there is a cure, every 3 months we go.
Her appointment went really well.  Her last A1C was 5.2 and this time is was 5.5.  So overall a good number.  We made a few basal changes at night but other then that left everything alone.  Our goal for next time is that she does QUICKER fingersticks at school.  She is soooo slow!  I think she gets caught up in everything that is going on in the clinic but she needs to move it in and out!!

I will say about her A1C I know several people last time expressed concern about it being too low.  Trust me in saying that I never purposefully run her low to get a good number.  I work really hard to get that number.  (Also not saying if yours is high you don't work hard, I know diabetes is not a fair disease.) I really think the CGM is one of the most important things in her diabetes care.  Knowing where her numbers are going is so important.  Those arrows, oh those arrows, as much as I hate seeing them in either direction, the information they tell is VERY important. 

I am going to try to start blogging more frequently.  It really helps me get my thoughts out.  I hope that others will understand more about diabetes and those that are living with diabetes will know they are not alone.

I LOVE reading your comments.....

Sunday, January 22, 2012

It's HERE!!

If you remember from my last post, I was very excited for Medtronic's release of their newest product MySentry.  The device is suppose to help parents hear the pump (CGM)  at night as well as see what is what is on the pump's screen.

We were trying to decide if we should wait and see if insurance will pay for this item or if we should just pay for it.  At this point in time, Medtronic is not working with insurance companies to cover this item.  It is a cash only item.  They do offer a payment plan that is interest free which is nice.  We decided to go ahead and purchase this item and try to submit to our insurance company and see if they will cover it.  I will update in a few weeks-months to what the insurance company says.  We are waiting on our first bill and then we will file.

The hook up was really easy. It only comes with three parts, a color display screen, an outpost and a power cord.  You just had to connect the pump to the display screen and then connect the outpost.   Following a few very easy instructions.  The first time the outpost did not link correctly but after the second try it worked fine. Total it took just a few minutes. 


Right away I could see how awesome this was going to be.  She was up in her room playing and the display was downstairs with us.  She was going low and pump was beeping and so was the MySentry.  I loved that I didn't have to wait for her to come down to tell me, or have to worry about her playing and wonder if she was high or low.   Of course within 30 minute of us having it her sensor died and needed to be recharged and  a new CGM site put on.  For those who don't know how it works, the transmitter charges about 20-30 minutes and then there is a warming up period of about 2 hours. During this time no data is transmitted.  That two hours seemed so long!!   But when it was time to put in that first BG the MySentry beeped and let us know.  This was really nice because before if Brianna was playing she might clear the "Meter BG Now" screen several times before letting me know.

We put the outpost in her room and then moved the display where I went, either in my room or in the kitchen.  She was playing the basement for a while with the display right at the top of the stairs and it did lose signal a few times.  But once she came back near it, it picked her right back up.

The best part so far is knowing what her number is doing without asking her a million times a day, "What's your number?"  I don't think I realized how often I did that.  I think she really likes it too.  She is able to walk over and just see her number without having to push buttons on her pump.  (In all honesty she rarely looks to see what her number is without being asked)  She does think it is really cool though. 

The next big challenge, the whole reason we got it was bed time.  Her sensor I thought was reading really well, but apparently we did a bad calibration and the sensor was not happy!  It said she was trending downward fairly quickly, when in reality she was holding steady at 138.  I will say every time her pump beeped in her room the MySentry beeped.  The volume is adjustable which is nice.  We have it on the loudest setting right now and we can hear it from the first floor when the display is on the second floor.  But back to last night.  It took a good hour for the sensor to be back linked up the her actual BG.  After that I went to sleep, it was nice that when she was starting to go upwards it beeped let me know.  I went in her room cleared her pump and corrected.  Back to sleep for me.  There was two times when the outpost and the pump went out of range.  We are planning on moving the outpost to a different outlet in her room that will hopefully fix that problem.  It also beeped weak signal.  There are sometimes at night that her pump, if we miss it, will beep weak signal so long that it will lose the sensor.  So to fix that I just had to readjust her pump so her CGM and pump were a little closer.

Before we had the MySentry, at night, she would wear a wireless microphone in her pump pack and I would have the receiver and speaker on my nightstand.  You could always hear some noise coming from her room, if it was her rolling over, coughing, her stomach growling, etc.  It was a little hard at first to hear nothing but just see the number.  I did walk down to her room once.  Got there and didn't know what else I could do.  I know it will alert me, I guess just because it is so quiet I will have to get use to it.

Here are a few pictures...

Brianna and the box!  We are so happy to get it.  It really did feel like Christmas morning!

The outside of the box. 

Up and running.  Couldn't have asked for a more perfect BG  :)
From the picture above you can see there is a lot of information on the display screen.  From left to right- B.H. is her initals.  You can add a picture under it but none of them are that great.  She was a little disappointed.  Next is the battery on the pump.  The 70u is how many units of insulin that is left in her pump.  Next is how strong the signal is.  The next two deal with the sensor.  The first is when the next calibration is due.  The other is how long the sensor has left, they say a brand new sensor last 3 days.

As other people that have gotten the MySentry have mentioned it would be nice to see how much insulin on board left.   But maybe that will be changed eventually who know  :)

Another thing that might be nice would be if there was more then one outpost.  For us we have a two story house with a basement.  It would be nice to keep an outpost in her room as well as in the basement so it is always able to pick her up.  You might be able to buy another one, but who knows. 

I am looking forward to this summer to see what the range is outside.  We have a swingset in the backyard, it would be nice for me to be able to monitor from inside and not have to yell and ask her how she feels.   We are also looking at finding an adapter so we can take this with us in the car on long trips.   This could also help me feel a little safer IF she was to go on a sleepover.  Funny how a small device that just displays a number can make me feel so much more relaxed. 

Here is what it sounds like...



Overall we are thrilled with it.  I hope now at night I will have a little more confidence that I will hear the alarms and maybe sleep a little better.  I know I will always either get up and do a fingerstick at least once a night or get up and look at the screen, but now those inbetween times I know it is also watching and keeping me informed. 
And that in my mind is priceless....



I will update in a few days with my thought about how things are going!  Coming up too, it Brianna's 3 month endo appointment at the beginning of Feb. 

I LOVE reading your comments and questions so post away!!

Thursday, January 5, 2012

Sleep!

Sleep. The easiest part of the day right? Most parents look forward to being able to put their little ones to sleep and relaxing, not having to worry about them for several hours.  Seriously not even thinking about will they wake up in the morning.

For parents of children with Type 1 Diabetes, sleep is anything but restful.  Remember diabetes is a 24 hour disease you never can take a break from it.  Their blood sugar can go really high or really low quickly.

Being connected on facebook lately I have been hearing about more and more kids and adults, Type 1, dying of "Dead in the Bed Syndrome."   JDRF even had a eye-opening statics that 1 in 20 kids, with Type 1, will die from Dead in the Bed Syndrome.    It is heart breaking, but it is realty.

When we were diagnosed they told us check her before she goes to bed, at midnight and then once more before morning. You would not believe the number of lows I have caught in that in-between time, when she is suppose to be safe.  In reality I checked her at LEAST every 2 hours when she was sleeping, more if she was low or going high.  Lucky for me she sleeps through most of the checks.  The checks have decreased a little since she is on a CGM, but I still have to walk down to her room to either check her pump to see the number or do a finger stick.  Her pump because it is connected to a CGM does alarm when she is going low or is high, we set what numbers it alarms at and how often.  After alarming so long it will alarm longer and then vibrate.  Guess what?  She sleeps through ALL of it.  So scary to think that it is telling her to get up you are low!!  We have tried several different things for me to be able to hear the alarm down in my room.  We have tried a baby monitor in her room.  That works okay but if there is static or if she is sleeping on the pump I might not be able to hear it.  So the next step was to get a wireless microphone and put it in her pouch and then put the receiver and speaker on my nightstand.  That again works okay.  But I hear every time she moves and there is also static.  Plus the microphone uses batteries that can die, finally had to do rechargeable, and they ALWAYS seem to die in the middle of the night. There are some nights that I am just so tried of walking down to her room to check her because she is low or on the way back up, that I just stay there and sleep with her. 

Okay not sure if anyone remember but she is almost EIGHT years old!  Not sure how much longer she is going to be okay with a baby monitor, microphones or me sleeping with her.  And I totally don't blame her.


Yesterday, a product that will help nighttime was FINALLY approved.  This product has been in the works for over 3 years with the last 18 months or so waiting on FDA approval.  Here is a link to the product.

Brianna has the Minimed Revel pump as well as the CGM.  So she is able to get this product.
The name of the product is mySentry.  When reading about it and what it could possible do, just brought me to tears.  Being able to sleep at night in my bed and being able to look over and see what the CGM graph is doing is priceless.  Actually being able to hear an alarm and respond to it quickly before she gets too low or high, priceless.  Being able to have this device when she is in the house and not having to constantly ask her what is your number, priceless.  Priceless for what it can do, but guess what it is EXPENSIVE!!  Seeing how it just came out on Jan. 4, 2012, insurance companies may or may not cover this item.  We are right now trying to see if ours will cover it.  If not we are probably going to buy it, regardless of the high price tag.  I NEED sleep, I NEED to be able to keep my daughter safe at night. 

There is also a video about parents that have tested the product out and loved it. Hearing them talk and their son talk, was amazing.  I always want Brianna to feel safe.






So when you put your kiddo to bed at night and say "See you in the morning"  consider yourself lucky.  When I tuck her in I always tell her I will be back shortly to check you. 

Hopefully one of my next posts will be of me explaining about how mySentry is working for us.  It might be a few months though.  I e-mail her endo yesterday and she said it would be a few weeks before they would write for it because the rep from the company has not talked with them about it yet.  I e-mail the rep and he said they are just learning about it now so they can talk with the hospitals and doctors offices.  Then the company reps have to talk with insurance companies to explain why this product is necessary for people and kids with T1 to have.  It is all a process that takes way to long!  And yes this does need a prescription.  Why I have no idea, but it does.



I love reading your comments so please post  :-)

Wednesday, December 7, 2011

Winner!!

First Winner of the Thermal Lunch Tote is Comment #17
Kris said...
Facebooked it! :)
The Second Winner of the $10 GC is Comment #7

Misty said...
Shared on FB!!

Friday, December 2, 2011

First Giveaway!! And Fund Raiser!

I am so excited to be having my first give away!

So what am I giving away and how do you enter?

Let me tell you why I picked this company and person to host my first give away.

I was first looking for ways to raise money for JDRF, without just going door-to-door and asking for donations. (Which we do and are very successful.)  A good friend of mine suggested that I let her host a party for all my friends and family and she would donate all the commission to JDRF and Team Brianna.  Wow!  That was an awesome idea.

Erin Diehl is a fellow D-mama so the cause of JDRF is as close to her heart as it is to mine.  She is a great supporter of our team and has had several parties for me and others to raise money for JDRF and other causes.  In total she has donated well over $500 to just our team!  That is truly amazing!  She works for Thirty-One Gifts .


This is a brief look at what Thirty-One Gifts are about taken from their website

"Our stylish, affordable products are exclusive to Thirty-One. From our signature purses and totes to storage solutions that help organize your life, you'll find something to fit every personality and situation. Each season, we develop new products built on the idea that our products must be functional AND fashionable (and, of course, make great gifts!)"

Sounds like great products right?  Who would want affordable nice quality purses, lunch totes, storage, and stationary among other items.

One of the Items we are Giving Away is a Thermal Lunch Tote:

You get to pick the fabric!!  You can even have it personalized if you want- though that is extra.

We are also giving away a $10 Gift Certificate to shop at Erin's Thirty-One Site.



We currently use the Thermal Lunch Tote as Brianna's diabetes bag when we go out.  No one even suspects what is inside of it.  She gets so many compliments on how nice her "purse" looks. Because it is thermal the insulin will stay cool inside of it.  There is more then enough room for all the supplies that we carry around with us.  She does also have two that she uses as lunch boxes.  She loves that they are personalized with her first name on it. 

I am having a party locally, but if you would like to order and help support JDRF you can!  Thirty-One can ship right to your house.  Here is how to order and help support JDRF.  To place or order or look at the catalog click here then click on events, click on Kelly's JDRF event and then you can shop online and it will benefit our fund raising event.  I have several of the products that I use all the time from the Cindy Tote that I use as my diaper bag to the cinch sacs that Brianna uses to keep all her sports and cheer items organized.  These products are great!  If you are reading and think this you know someone who would love these items but you can't decide what to give, they do offer gift certificates!




So how do you enter the giveaway??? You do as many as you want.
1.  Follow my blog- 1 entry
2.  Go To Erin's Thirty-One Site- a facebbook page and leave a comment that I sent you!  It is a closed group so you will have to ask to join. -1 entry
3.  Sharing this giveaway on facebook- 1 entry- up to 3 different times

4.  Having Erin host a party for you -5 entries!!  You don't have to live locally, she can send catalogs and set up the party on-line so you can have one.

For each post you did so.

Rules:
This contest will close and the winners will be picked on Wednesday, December 7, by 5pm. You will be have until 5 pm on Thursday, the 8th, to claim your prize or a new winner(s) will be selected.  This way it gives the winner of the gift card enough time to place their order before the party closes.  All orders have to be placed by then for you to get the extra entries.   I will use Random.org to select the winners.


I hope I explained and did everything right!  Remember I am still new to blogging and the is the first giveaway!!

Good luck!!