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!

Just Like Any Kid..........Any Normal Kid????

I get so frustrated when I hear the doctors, nurses, and many others say, "She can do anything she wants and can do things just like any other kids!!!"  To be honest it makes me mad, sick, and just plain angry!  Because it's a lie and I would like to do a play back of bits and pieces of our every day life and see how they explain their statement then.

Yes, she looks normal, but there's so much more to it than just looking healthy or normal!

Here's a recent example:

If Nevaeh can do just like any other kid I guess the other day we should have been able to go to the waterpark worry free!  Instead, we had to decide how to handle the situation and prepare the day before since she is only suppose to suspend her pump for 1 hour!  What!?!  Yes, one hour.  So I could have said ok Nevaeh have a blast for 1 hour and then we have to leave but I didn't because I want her to have fun and be normal.  So instead I give her less insulin before we go in knowing she could go low because I've seen her do it before with alot of physical activity.  Then at lunch I have to go out to the car. Get her pump. Reattach it. Check her blood sugar. Yes, she's high. Give correction. Does this sound normal to you?  Then we get up to the food stand to order and I have Nevaeh on my hip and she is holding her pump in her hand in a water proof bag because she's still wet and what happens.......the tube gets hung on her arm and she rips the site off accidentally!!!  I have no choice at this point but to tell the staff to hold my order (I've already paid), go home, get her an insulin injection because there's no use in putting on a new site if we are getting back in the water.  When we get back to the park we have time to eat with twenty minutes to spare for her to swim before we have to leave for good.  And I have highly educated people tell me she can do things like any normal kid!

There are many examples I could tell from only 8 months of experience with this disease! Here's a few short examples:

 Several nights Nevaeh has asked me am I going to be ok?  What if I go low in the night? How will you know?  Is this normal?

Me pulling over because Nevaeh fell asleep in the car but I don't know what her blood sugar is and need to check it? Normal?

Nevaeh saying she's low on the way to somewhere we have to go.  We pull over, check, give her what she needs to bring it up and then get to our destination late.  Normal?

Snacks at 3am to bring a low up. Normal? 

Checking to see if your 5 year old is breathing during the night?  Normal?

And the list could go on.....

Please don't take this wrong....I believe we should have a positive outlook overall but be realistic as well!

Thank you for letting me vent a little it is well overdue.  :)

The Beginning of CGM and MySentry

 As most of you know we started the pump in March and then we were told that we could start the continuous glucose monitor 6 months later so that it's not so overwhelming learning it all together. Well tomorrow is the day....yes it came early because they think we are ready! We are ready but I still as a mom am concerned about how Nevaeh will deal with it tomorrow. She is so brave with getting her pump site on, but between you and me the needle on the cgm is MUCH bigger!!! I know she will be brave and please pray I will be as brave as her putting it on her! 

It's also stressful knowing how much this small piece of life saving technology can cost! As most of you know from the fundraiser we had back in March the pump, cgm, and monitor cost over $3000 out of pocket!!! We were blessed to have raised $1010 of that! But after reading a comment from a mother on a forum I read say that she wish she had the money to purchase a cgm for her daughter before she passed away from Hypoglycemia (low blood sugar) early one morning in between checks, Justin and I decided that we would make payments on this life saving technology for the rest of our lives if thats what it took! 

For those who don't know the CGM (continuous glucose monitor) measures the glucose level continuously around the clock (while she's wearing it) and will send those readings to Nevaeh's pump wirelessly, as well as, to the MySentry monitor we will have in our bedroom! It has AMAZING benefits (there's a long list of great things) like allowing us to know her blood sugar is going up or down up to 30 minutes before it does!!! So that means I won't have to worry as much (be up half the night) because if her blood sugar drops the monitor in my bedroom will begin to alarm and will continue until I have addressed the issue!!!

I can't explain how much freedom I think this will give us all. Nevaeh because she will be able to sleep more restfully in her own bed (and not have to worry if she is going low or not), and Justin and I because we will start getting more quality sleep!  It will give us all a little more peace of mind!

Please continue to keep us in your prayers! Most who have never experienced first hand don't realize the toll type 1 diabetes has on every part of your life. I for sure had no idea, but every day you wake up it is there and effects how and when you do things. We are fighters though and my baby girl is strong and healthier than she was 8 months ago so I thank God for that every day! Thank you for those who listened and are praying!!!

Diabetes Blog Week: My Diabetes Hero

Today is the last day of Diabetes Blog Week and the topic is "Diabetes Hero". This one is a no brainer and is probably the simplest topic yet!

My Diabetes Hero is my daughter Nevaeh!  She has been a trooper through it all!  Since October 23rd she has had over 600 injections, 20 site changes, and over 2100 finger pricks!!!  Not including blood work and her hospitalization!  She has felt crummy half or more of those days due to highs or lows.  She has had moments where she is scared of going low again, had emotions of anger, sadness, and frustration all because of this stinking disease called Type 1 Diabetes!  But through it all she trusts God will take care of her and she has prayed for a pump and prayed for a cure!  She amazes me each day and has been through more than I have in my lifetime! I admire my little girl for her courageousness and bravery each day she fights against this disease!  If I could I would take the disease on myself for her but I can't so I just do my best to be as strong as her as I watch her deal with it like a pro!!!  I love my sweet girl and am so blessed to have her in my life!!!

Me with My Hero, my daughter, Nevaeh!