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!!

Three Months???

Seems like life is just flying by.  It is hard to believe that I have not written something in over 3 months!  I have all these great ideas and things I want to share, the problem is trying to find time to write them!

I am really going to try hard to write more.  I love reading everyone's blog and thinking to myself yup, that is exactly what we go through. 

Anyway, I guess I will start with yesterday.  Brianna went to the Endo for her normal 3 month check up.  She had a great appointment.  She gained almost 3.5 pounds and grew one inch in three months!!  That is AWESOME!!  She is still cruising along in the 50% for both.  I know she isn't going to be super tall, I am only 5'3. Her blood pressure was great and her skin looked wonderful. 

The last few months we have been dealing with more highs then ever before.  (Could be because she is grow, but could just be because.)  Numbers is in the 300's.  I was a little worried about what her A1C would be.  I was guessing something in the 6's.  BUT it was 5.6!!!  Only a slight increase from 5.5 last time.  Endo was really happy, and told me that I am WAY to hard on myself and that her numbers are great.  

I know there was a big debate over whether or not to publish what the A1C is.  But for me I am proud of it.  I don't put it out there to make others feel bad.  I do it in hopes to encourage people.  I also post things because I don't talk to all my family daily and this gives them a chance to know how Brianna is doing.  I would have posted what her number was regardless. 

I was asked what are your secrets. LOL!  Really I don't have any.  But here are a few things that I think really help with keeping her numbers in range, the best I can.

I feel SO SO SO blessed with our insurance company. How many people can say that?   Brianna is able to receive all the supplies she needs.  I never have to worry about any supplies.  There are days if she is having really crazy numbers that I will test 20+ times, YES 20!! On average I test 13-15 times a day.  But I never have to worry about running out of test strips.  Our new insurance is even covering Blood Ketone strips, again a blessing because those suckers are EXPENSIVE!!  (On a later post I am going to  post how much diabetes really cost a month.)

Brianna also wears a CGM.  What is a CGM?  Well it is a continuous glucose monitor.  It gives us a good idea where her numbers are heading.  Not always perfectly calibrated but for the most part, it is close.  We have the settings on her CGM really tight.  I have it alarming probably more then it should but I don't want her to sit in the 200's for hours and not get a correction.  I take full advantage of the CGM.  Brianna wears her CGM 24/7.  I do not give her a break, and really she doesn't like having it off.  She doesn't always feel her lows so this helps.  I do understand that some people don't want a CGM because of the additional poke but if it will keep her safer??  Again I feel so blessed that our insurance covers this.  The cost is ridiculous! I know several friends that would love one but their insurance doesn't think it is medically necessary to that I say REALLY??!?

Another thing that I think keeps her A1C lower is what I run her at night.  This is something that sometimes takes me out of my comfort zone.  At night her range is anything lower then 90 I will treat with carbs (unless CGM shows she is going up.  Again LOVE the CGM) and I correct anything over 130 sometimes 140 (unless CGM shows she is dropping, man I love that thing  :-) )  
I know these numbers are low 90-130 is a really tight range, but think of it this way they sleep 8-10 hours (I would love to sleep that long!!) and if she stays in the 200's all night that is a HUGE part of her day.  When she runs higher she feels really bad in the morning, and all that sleep doesn't really matter.  I know everyone is different I would never suggest you change your settings with out talking with your doctor.  I can do this also because she does have the CGM and MySentry- can you tell how much I love the CGM???

Another person that plays a big part in Brianna's day is our school nurse.  One that is there full time, the clinic aid, and then the RN come every 3 days.  They take great care of Brianna.  I know they always have her be interest at heart.  They call any time she is low or really high, so we can talk about how to treat her.  They are also starting to use the CGM.  She will call and say she is 154, but the CGM is showing her is dropping and there is an arrow down.  So we can treat her early and hopefully keep her in class more.   They are very supportive.  I love that they are willing to take the time and call, vs just giving her 15 carbs- that would send her through the roof!!! 

Another HUGE part of her A1C being great is our Endo.  She is the best!  She is really available to her patients, by phone, or e-mail.   We go a large Children's Hospital.  There are several different doctors and nurse practitioners.  The one we picked is, I think, the best.  She is always there to check carelink and offer her suggestions.  Yes suggestions, she doesn't make me change things.  She really believes I know Brianna best.  She LISTENS and takes what I say into consideration.  I love that she doesn't just call and say do this!  We make constant changes.  We never leave Brianna's settings the same for 3 months, how can you, a lot changes during 3 months!!  We are always tweaking things. 

Lastly I think about why I keep her numbers in range the best I can.  What is running through my mind?  Well, I think about my daughter in 20 years.  I want her to be complication free.  I never want to look at her and think you know what I didn't do EVERYTHING in my power to keep you healthy.  Do I lose sleep?, sure, am I stressed and worried more then most non-d parents absolutely but in the end she is MORE then worth it.

Well, hopefully the next post will come long before August.  I can't wait for summer!  The kids only have 20 more days of school!  Wow!!

Thanks for reading! We love reading your comments.  :-)

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.....