Wednesday, November 7, 2012

Life as we know it

Life has been pretty busy as of late.

On Monday Morning Elliott had a sleep deprived EEG.

Those are never fun. We stayed up all night Sunday night, took Daddy to work.
Then went for Elliott's EEG. Elliott was SO tired. He couldn't stay awake,
and that was exactly what we needed him to do.

We don't have the results from it yet. This was his fifth EEG since last year.
We've kinda become pro's at them. The reason for the EEG is because
the inflammation in his little body.

Ya see, Systemic JIA causes fevers, and in Elliott's case, seizures too.
We need to make sure he is not having consistent seizure activity.

Being that Elliott has had a rough few weeks of sleep, or the lack thereof.
I won't be surprised if the EEG comes back that he is having seizures at night.

That would mean we would need to go back on the seizure medications. Blah.
They are not fun. Pray for a miracle.

After the EEG we came home and crashed for a few hours. Or tried to.

I worked on school work with Jackson and Clara...and made the little boys lay down.

Then we loaded up in the van to drive an hour north, well, it *should* have taken
30 minutes. But thanks to the lovely traffic we encountered. It took an hour.

All of the children passed out in the van, and slept the whole way. I played loud music
and had the ac hitting me in the face to stay awake!

Elliott was measured and fitted for a special adapted stroller. (a fancy one at that)
We have decided to call it "Elliott's Cadillac". He was so exhausted, and not having a good day
 pain management wise, so I carried his little noodle body into the pediatric mobility office.

The front desk secretary looked at me and
said "Do you carry him everywhere like that?"
I said "Um, yes, Most days."
She says "Does your back hurt?"
I say "Um, yes, Most Days."
She says "Well, it won't pretty soon!"

Music to my tired ears.

Elliott had outgrown a typical stroller  and the one we were using hurt him.
(little to no padding,etc) The people at Pediatric Mobility could not have been nicer. I seriously could have cried. They were SO compassionate. We LOVED our friends at Midwest Orthotics in Indiana (our other kids wear foot braces,and Elliott has a compression garment from them). They were like a second family to us.

 I was SO blessed that Pediatric Mobility, knew of Midwest (small world!) and had the same family like atmosphere.

When your child is in and out of cold doctors offices, being in a homey welcoming office just makes a world of difference.

Of course there was a mound of paper work to collect. They were straight with me and said it can take weeks to compile all of the doctors/therapists letters, submit it to insurance, and get it approved.

IE: You could have your adapted stroller in...3 months.

Except, we could really use it, like yesterday.

After the fitting appointment we went up to Macon Children's Hospital.

I'm learning my way around town...all based around where the hospitals/therapists/pediatrician's offices are.
We have been collecting cell phone chargers for the Children's Hospital. When parents drop everything and take their children to the hospital, usually the last thing they think to grab is their cell phone charger. It's also one of the first things you really need, as most families travel from quite a distance, and need to make long distance calls. (Something you can't do on in room phones) Wouldn't you know the nurse at the nurses station was the nurse who took care of Riley. Such a nice guy. And he was shocked at how many chargers we'd collected! The kids really liked being able to help, and Riley liked introducing them to the PICU team that took care of him.

By this time it was about 6pm. Daddy didn't have to be picked up from work until 8pm. So we headed over to Mercer University Park. I pushed all four of my babies on the swings, and basked in the glory of how thankful I am for them.

It's so humbling to walk into a PICU, and walk OUT with ALL of your children.

I don't take it for granted.

By the time we picked up Daddy from work...I could barely keep my eyes open. And we still had to head home, make dinner, do baths, and put kids to bed.
On Tuesday Morning I contacted Elliott's doctors to follow up and ask if they had sent in the paper work  needed for Elliott's adapted stroller. (I had contacted them a week before,hoping it would already be in the mobility offices hands for our appointment. But yea. It wasn't.)
 They informed me:
"We sent it a few minutes ago"

I called the Mobility office,
She inform's me:
"We got everything we needed...TODAY!"
"We can order his stroller...TODAY!"

Praising the LORD!!!!

Brandon took Tuesday off. It was so nice to have him home!
We took all the kids with us Tuesday to vote. That was so fun! No really, it was!

Georgia is high tech too! All digital ballots. Fancy!

To top if off they gave all of us "I'm a Georgia voter" sticker with peaches on them, of course!

We talked to the kids about the election process.

I asked Clara who she would vote for and her answer?

"Well, I'm not too sure. I mean, President Obama, is uh, our President. And we are supposed to respect and honor him. Because God tells us to. But, I know when we watched Mr.Mitt that he had a lot of good things to say. But why can't they both be nice to each other? I think I'd like to vote for a girl. Is there a girl to vote for Mom? Cause girls are nice."

I feel the same way baby girl. Why can't we all just be nice to each other? And, yes, I think a Woman would make a great President! Clara 2016!

Tomorrow is our Clara girls 8th Birthday. I really can't believe it. I'll put together a little video of her and post it tomorrow.

If your still reading...well...your a true friend.

For pictures of our life over the past few days follow me on instagram!

So. That is Life. As we know it.

And, to be honest I was so bummed to hear this duo has called it quits. For now.
I *might* have been more bummed about that, than the Elections. Just kidding.
Kind of.
Really hope it's not the end of the Civil Wars as we know them to be.


Molly said...

Hi! I have read your blog for some time, and I have to tell you how beautiful your family is and how wonderful you are as a mother. (You just brought me to tears when I pictured you carrying your son Elliott around). And, I will continue to keep him and the rest of your family in my prayers. I know God is watching, so my hope is that he will begin to make all of Elliott's pain go away, bring some miracles into your lives and make life a little easier. You all certainly deserve it. Take care, Molly.

6HartsforHim said...

Thank you so much Molly! You are so sweet and kind to take a moment to share your heart. You have blessed me SO much today with your words and compassion. Blessings to you! And thank you for reading our blog!