JDRF Walk Team Name and How to Join Us!!!

We just came up with our team name and registered for the Juvenile Diabetes Research Foundation's Annual Walk to Cure Diabetes! This year's theme is super heros, because that's what Nevaeh and everyone else with this diabolical disease are.....SUPER HEROS!!!   We are super EXCITED to announce that our team name is

...........drum roll please............

SWEET GIRL and the CURE SQUAD!!!

Now that we have a team we are looking for team members, donators, and corporates sponsors!

So if you would like to learn more about walking with us!!!  Donating to the team!!!! or Becoming a Corporate Sponsor!!!  Go HERE

We look forward to raising money for a GREAT cause and having FUN supporting Nevaeh as we FIGHT for a CURE!!!

 

JDRF Walk Kick-Off Event

Now for some good news!!!

We recently were invited to the JDRF Walk Kick-Off Event at Frankie's Fun Park!  We were asked to come and hear about how to form a team for the walk and to have FUN!!!  Each child was given 3 free attraction passes from JDRF!  Justin, my husband, had to work that day so I invited my mom to go with us and she was glad to go and support us!  We had a blast!

Of course, we went to hear about the walk but most of all Nevaeh has longed to meet other children with Type 1 Diabetes so the event had a dual purpose!  After we listened to the brief talk about the walk we then almost immediately met another family who actually came over to us to find out about Nevaeh's pump and how she does with it.  The family also had a daughter around Nevaeh's age with Type 1 Diabetes who is currently getting injections but wanted to find out more about getting the pump!  We were so EXCITED to meet them and to tell them about how the pump is amazing.

Before no time we were sliding down the fun slide and racing go carts together!  We exchanged contact info in hopes of getting the girls together again!  Nevaeh had a blast meeting this little girl and I was so happy to have met their family!  We had a great rest of the afternoon playing at Frankie's.

On that day God answered Nevaeh's prayer, to get to meet another little girl with Type 1 Diabetes!  We look forward to meeting up with the family again soon and hopefully at the walk as well!

Here are some pics of us having FUN at Frankie's:

My Heart Breaks....

I haven't posted in a few weeks because we have been busy and emotionally drained half of the time. So now I'm playing catch up because there are a couple of things I need to catch up on, one which is sad and one that is happy!  So let's rip the band aid off and get the sad over with first! 

A few weeks ago Nevaeh was taking a bath just like every evening when suddenly tears began to flow.  I honestly had no idea what to think because I had been in there with her the entire time and nothing had happened.  Then she began.....she told me how she hated diabetes, how she hated everything about it, how she didn't want the pump anymore or the CGM, she didn't want shots either or finger pricks, how her fingers were sore, how she just didn't like having it all the time, how she didn't know what she would do if she still had it when she got to be an adult! 

My heart broke as I listened, cried, listened, and cried with her!  This lasted through the bath time and through getting dressed to a total of longer than 30 minutes!  It tore my heart to pieces!  Oh, how I wish I could take this dreaded disease from my baby girl!  So once she calmed down I finished talking to her and then did the only thing I knew to do, which was just to hold her and pray over her. 

This was the first time Nevaeh had melted down since a few months after diagnosis and I feel sure this will not be the last!  Type 1 Diabetes is always there seen or unseen it never leaves (until a cure).  Please keep my sweet girl in your prayers as she deals day to day physically and emotionally with this disease. 

Life Saving Devices at Work at the Ranes' Residence

We recently started Nevaeh on the Continuous Glucose Monitor and the MySentry Monitor (to find out a little bit about what these are read previous post).  It has been exciting so far! Like I wrote about in my last post we almost immediately saw the benefits of these devices.  But what happened last night blew my mind!

On a normal night, I put Nevaeh to bed around 9pm and then set my alarm to next check her blood sugar at 12:30am.  Well last night I did the normal routine, set my alarm, and fell asleep.  But .......it was not a normal night I was rudely awakened by the EXTREMELY ANNOYING but LIFE SAVING alarm of the MySentry at 11:33pm telling me Nevaeh was going low!!!  I stumble out of bed still half asleep get what I need to clean her finger and take her BS.  When I get to her and check her BS she is 54!!!  Anything under 60 is considered hypo and her doctor wants her to be between 120-150 during the night right now.  So you can imagine I felt amazed, shocked, scared, thankful, and many more emotions/feelings at the same time!  I could not believe that if this had just been a few nights before I would not have woke up for another hour to check her........and that could have led to a life threatening situation for Nevaeh!  I could not believe that it had woke me and that I really was not going to wake up for another hour!

I am so EXTREMELY THANKFUL and BLESSED to have this device for Nevaeh!  There's not much more I can say that explains how AWESOME and NECESSARY these devices are!  They are LIFE SAVING!!!

Too Good to be True???

Well, we started the CGM (Continuous Glucose Monitor) today and MySentry is connected and working currently in our home so we are pretty EXCITED!!! It really seems to good to be true at this point and I so hope it stays that way!!!

What is a CGM and MySentry you say?  And what does it do or help?

CGM (actual size)

Well, the CGM or Continuous Glucose Monitor is a device that is inserted into Nevaeh's tissue that measures the amount of glucose in her interstitial fluid at any given time throughout the day.  Once it is inserted it stays on for 3 days (maybe a little longer we will see how it goes) before we have to change the sensor.  The CGM takes those numbers and sends them directly to her pump wirelessly and it measures trends throughout the day. 

For example, one nifty thing it can do is let us know if Nevaeh is beginning to go low as much as 30 minutes before she actually does!!!  You have no idea how GREAT this is for us because we have to worry all night bc we are scared she might go low.  And believe me we have some crazy nights.  Now the days are a different story bc she can tell us when she feels low but even then now we will know ahead of time and hopefully get a snack in her eliminating the bad feeling she has when she goes low!  We actually already did this once today!!!

MySentry (really nice, looks similar to Apple products)

Now the MySentry is an AMAZING device that has an outpost in her room and then the outpost/monitor in our room that allows us to see at any moment day or NIGHT what her blood sugar is and if she is headed lower, higher, or steady!!!  I am almost in the point of tears typing this bc it means so much to me to have this and to know I can rest a little more peacefully!  I won't be checking three or more times a night instead I will be checking if I feel there's a need to based on what the scree right beside my bed says!!!  If she does begin to go low this thing is no joke it alarms so loudly you can hear it all through the house and it does not quit until you address the situation! 

I could go on and on about what all these devices could do and tell us but I don't even know the full extent of it yet!  It is really amazing how great technology can be! 

YAY!!! Can't wait to test it out further tonight!