Sunday, July 17, 2011

Boone

Sweet Boone.


Too sweet now I guess.

Lovely boy that I love so very much has joined his big sister in the Type 1 world. I can tell you the moment he was first thirsty and needing to go to the bathroom too often. When I heard back from the hospital that his blood glucose numbers were indeed high I broke down. Amazingly I was surrounded by friends when I heard the news. When I pulled myself together enough I knew I wanted Gwyneth to be the first to know that Boone had Type 1. When I told her she lept into my arms and said, "I will take care of him! I have been so lonely and I won't be lonely anymore! Don't cry, Momma." So there it was. She sprinkled her sunshine on that moment, too. 

It took me a while to tell Boone. Actually I didn't tell him. Cali asked. She said, "Why do you keep testing Boone's blood? Does he have Diabetes, too?" Yep. Yes. Yes he does. Boone was standing right there.  He said, "It's ok. I'll have Diabetes. I just won't have the shots or the pump." It was a start. A good start, really.

So here we are. 2 out of 3 kids. Wish it was me instead. I know that there are big plans for my kids. They are being prepared for quite a life. I'm so super proud of them and humbled by their strength and faith.  Gwyneth never asks WHY she has Diabetes. You'd think she'd ask why God allowed her and her brother to have Diabetes. Instead, she always says that she's thankful God helps her through her day.

We were listening to Never Let Go by Matt Redman on the way home from Childrens' Hospital Los Angeles a few weeks ago and Gwyneth and I both were overcome as we listened to the lyrics. With Type 1 we deal with literal HIGHS and LOWS of blood sugars every ten minutes. God never lets us go and He is with us through every HIGH and every LOW.

We are so thankful.


You Never Let Go by Matt Redman
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

(Chorus)

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You


 So very thankful.



Gwyneth's adorable pump belt in the photo from Amy at  www.toosweetboutique.net
Awesome photos thanks to Jen from http://adaywiththedeans.blogspot.com/

Sunday, June 26, 2011

Pump it up!

Gwyneth is loving pump life. I am too. We have met some people that are not sure about getting a pump and Gwyneth wanted us to post a video of how to insert the pump. It was hard at first and the noise of the needle clicking scared us both for a bit.

The reward came the first time that she dosed herself for a snack in the back seat of our car while I was driving her home from Childrens Hospital LA. We both kind of freaked out. With shots, in order for Gwyneth to eat something while we were in the car, we'd have to pull over, find some light, get out the insulin, get out the syringe, grab a calculator and give her the shot. It is a pain.

With the pump, she enters in the amount of carbs that she is going to eat into her pump and presses a few buttons. No syringe to deal with, no needles to fuss around with in public. With the Animas One Touch Ping she doesn't even need to touch the pump...it is remote dosed from her meter! Way cool.

The pump we use is here: ANIMAS

We still have to prick her finger and test her blood sugar every two hours. We still have to think about diabetes 24/7. But now we have help. And less shots.

Here's how to insert the pump cannula into her skin. The last few seconds of video are pointless as we were trying to find where we left her testing supplies...not an uncommon event in our home. I hope this video will encourage our type 1 shot friends that the pump isn't scary once you get the hang of it and the freedom you enjoy with it is immeasurable. Gwyneth will show you how it's done. She's a rock star.

video

Gwyneth is going to post on the joys of pumping, CHLA, and Bearskin Meadows camp soon.

Thanks for caring enough to follow her journey.

Wednesday, January 26, 2011

Going Solo

I'm so proud. Gwyneth is fighting for her independence. As we made the video of her first solo shot I was joyful. That night I was devastated. It's hard not to weep for her loss of freedom, the pain, hassle and difficulties of Type 1.

She came home from school today and announced she was going to do it all. From testing her blood to counting her carbs to dosing the insulin and giving the shot. And she did.

She then set her timer and proceeded to make the snack she just gave herself a shot for. It's a lot of work for a peanut butter graham cracker sandwich.

So the silver lining for today was camp. My amazing parents are paying tuition for our entire family to visit Bear Skin Meadows Diabetes Family Camp next weekend. After her painful Lantus shot and our prayer for a cure, we laughed away her tears by talking about campfires, arts, crafts, sports and tons and tons of Type 1 kids hanging out and having fun.

So here's to Gwyneth's victory. She wrestled Type 1 to the ground today. And she'll do it again tomorrow.



video





Monday, January 10, 2011

The Evolution of Type 1

We've come a long way.

For the first week or two, every time I tested Gwyneth's blood, Boone, her 5 year old brother, ran out of the room. He would race into his own room shut the door behind him and call out "are you done yet?" the entire time I struggled to extract blood from her tiny, sweet finger. He was so afraid.

Days passed and he would stand in the kitchen and wait patiently for me to be done testing his sister.

Today, Boone asked Gwyneth to teach him how to test her. 

That's the perfect illustration of our process of allowing Type 1 Diabetes into our lives.  At first, stressed and crying over the horror of causing Gwyneth to bleed hourly. Then, the realization that we have to take charge and literally be her pancreas. Then, the desire to make Type 1 palatable and even a cause for joy.

A few days ago Gwyneth said, "The best thing about Diabetes is that you find out just how much people love you and I feel so loved." 

It's true. Friends, Chrissy and Rebecca, came over to play and without being asked they decided not to eat until Gwyneth's insulin shot kicked in so that she wouldn't be eating alone. Mrs. Ybarra, the Administrative Assistant at Gwyneth's school drove 5 hours to Childrens' Hospital LA with us to learn how to give Gwyneth shots 3 times a day every single day. Gwyneth's teacher, Mrs. Dean, spent hours in the hospital with Gwyneth. People pray for Gwyneth all hours of the day and especially at 8pm when she has her painful Lantus shot. The list goes on and on.

So we're thankful. We're still frustrated but we know life is hard for everyone. Everyone has struggles. Ours are just a little more obvious. We're thankful for our countless blessings.

Here's our first attempt at a video. Gwyneth decided that she'd like to take a video of how we test her blood, but she felt that it would be best for everyone to watch the blood test on Rufus the Diabetes Bear first! She's easing you in just as we had to ease ourselves into becoming a Type 1 family. So enjoy Gwyneth's first video! We are learning that we'll have to do videos during the day for lighting but this is a good start. The fact that I was able to upload it gives me cause for celebration! Boone loved testing Rufus the Diabetes Bear so much that he asked me to add "Test my Sister's Blood" to his daily chore list. Again- we're thankful.



video