It's been a while....but I still HATE Type 1 Diabetes!

I HATE Type 1 Diabetes! Just thought it needed to be said at 2am as my sweet little girl is 357.
So many things go through my head when l wake up to check her and then so many more go through my head as l try to lay back down to sleep until my alarm wakes me up in an hour to check her and make sure her blood sugar is coming down! I hardly ever do go back to sleep in that hour bc my heart races and so does my mind.
So many things, wishes, and wants in my heart and mind! I am human! But l must remember to hand them over to God bc I can do none of it on my own!
Last night was the same but opposite she had just been checked a half hour before last night when I suddenly woke up and felt the need to check her. A half hour before she was 130 and at that time she was 90 and had insulin on board (would have went lower). Last night I truly believe God took care of my baby (as He has many) by allowing me to wake up! She would not have been checked until around 3 hours later which by then I'm sure it would not have been good to say the least.
Please continue to pray for Nevaeh and specifically her numbers at night. We fight against a disease that never backs down. God's design for our bodies is nothing short of miraculous and Justin and l although we try, can't be the pancreas that God designed. BUT we will keep working and doing the best we can for Nevaeh's body until there is a CURE.

1 Year........and Hopefully Not Many More

It is so hard for us to believe it has been a year since Nevaeh was diagnosed with Type 1 Diabetes and Hypothyroidism.  It has been a hard year but we have stood strong through it all!  We have stuck together through the good and the bad.  Today has been hard not to think about what was happening throughout the day on this day last year!  It was a terrifying experience for us all that I pray we will never have to endure again!

Although, I will never say that there is anything GOOD about type 1 diabetes we are very thankful for several things that have happened through the year.  We are thankful for getting an insulin pump and CGM monitoring system!   We are thankful for the support through prayer and financially to make this possible!  We raised over $1000 for the pump and system which cost over $3000!  We also just a few weeks ago found out our insurance is going to cover the MySentry monitor meaning we only owe $349 for it all!!!!  We also had a great experience with the JDRF walk for a cure this year with friends and family and we raised over $2000!!!  We are so thankful for all these things!

Nevaeh is mine and Justin's HERO!  She is so brave, courageous, and strong it is unbelievable!   That's why this past weekend we went to Atlanta and celebrated at American Girl and the Georgia Aquarium!  This was a great trip and was a great surprise and reward to Nevaeh for her bravery this year!  We feel like a celebration is something we will try to do each year to help her understand how proud we are of her strength through it all!  I attached a few pics of the fun weekend below!

I said all of those things because I try to keep focused on the good but I am human and it is HARD!  I struggle a lot with emotions (not as much as the first months but still a lot).  Today is a very emotional day for me.  Nevaeh went to sleep crying last night because she knew what today was.  It breaks my heart seeing my baby girl struggle with this disease day to day!  It never goes away, never takes a day off, type 1 diabetes is constant and never ending until the day we find a CURE!  I had no idea how extensive and how life consuming type 1 diabetes is until Nevaeh was diagnosed.  If I do not act as her pancreas everyday she would not live! It is hard but we stick together!

Please continue to pray for our family as we fight daily with this disease and to keep Nevaeh safe and happy with life!  We pray there is a cure before too many years roll around!  I know God can do anything and I believe it is possible!  Thank you for your support and love!


She loved the dolphins!!!

Yummy....Cheesecake Factory!!!

Georgia Aquarium

Posing with Mckenna

Posing with Mckenna again!
Mckenna has a pump and pump pouch too!!!

Our American Girl room, all pink, and her surprises!!!
Nevaeh and Mckenna checking in at the hotel!!!
Nevaeh and Mckenna checking in at the hotel!!!










Holding On......

Lately Nevaeh, my 5 year old, has been having quite a few emotional break downs about diabetes!  It breaks my heart every time!  The other night I heard her in the bath tub singing and shortly after I was called in and she was crying.  I later figured out it was the song "Holding On" by Jamie Grace that she was singing.  (I later recorded her singing it  - watch below) In the song it says:

"If only I can fight just a little longer
I know It’s gonna make me stronger

I just keep holding on to what I believe
Oh, I believe in you
Give me the strength to fight
And the heart to believe
When it’s hard to believe in you"

Nevaeh sings this part over and over some days and you can tell she sings it meaning.  Sometimes even crying while she sings it!  It's hard as a parent for your 5 year old to be singing lyrics like this, because she understands them and lives them!   Why does a child have to have these feelings already?  They are suppose to play, imagine, and be carefree!

Please pray for Nevaeh and other children like her who deal with this chronic disease daily!  She prays for a cure and talks about how she wishes there was one TODAY.......please pray with us!

Thank you for listening!  The video below is of Nevaeh singing "Holding On" by Jamie Grace. Sorry about the bass I didn't know how to fix it but I'm sure the video will touch your heart!
 

video




If you would like to help find a CURE for Type 1 Diabetes we are currently raising money for the JDRF Walk to Cure Diabetes. You can donate to our walk team by clicking the link below:




Heavy Heart......

I have to admit I have been having a really hard time emotionally here lately!  And 99% of it is because I have to see and put my baby girl through so much each and every day!  I am TIRED and SICK of it!

Just a few weeks back I had a very scary experience!  I went to check my sweet girl while she was sleeping and the meter said "LOW under 20mg"!!!  I grabbed her up and jumped off her loft bed which for me is a feat because I am only 5' 2".  At first she would not respond, but then I finally got her to open her eyes (she still wasn't coherent) and got some smarties in her. It took her a good while to realize what was going on and where she was, I gave her a snack, and then she was back to a good bedtime number!  For those who don't know severe lows can be life threatening and so can severe highs which leads me to my next moment to share.....

Tonight I check Nevaeh's blood sugar before she goes to bed and she is 414 (crazy high)!!!  So I give her a correction but then realize as she tells me she has to pee again that she probably has ketones!!!  So we head to the bathroom and I check for ketones......sure enough she has large amounts of ketones (which is not good at all).  Ketones result when your sugars (glucose) is not being distributed properly within your cells via insulin then your body starts to use it's fat as an alternative fuel resulting in a toxic acid (known as ketones) to be released in your blood. When there are large amounts of ketones and the blood sugar stays high this is called DKA and is serious and can be life threatening. If caught quickly and taken care of by giving more insulin with a syringe and then changing the pump site you can avoid the dangers at the time.  We also need to make sure she drinks tons of water when she has ketones to flush them out.  If this is not caught within the first 3 hours most of the time you would need to head to the ER.  So back to the story.....I check her blood sugar again after finding out she has ketones and she is already gone up to 444!!! So I then give her an injection and changer her site.  Currently she is 313 so I think I have caught hers and corrected in time tonight!

 These are just some of the things that go on daily on top of the normal finger pricks all day long and site changes every few days and on and on.  I just HATE type 1 diabetes!  I am tired of seeing her go through this!  I'm tired of her being upset and crying about how she hates it!  I'm tired of seeing her fingers sore with spots all over them!  I'm tired of the sores the sites leave!  I'm tired of the belly aches the highs bring!  I'm tired of the emotions, the draining of energy, and the times she can't concentrate because of blood sugar highs and lows!  I could go on......I'm tired of it ALL!!!

My heart aches, is tired, and heavy for my sweet girl!

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!!!