Raby Ramblings

March 16, 2012

Biopsy Complete

Very thankful for and humbled by the prayers of many today.
Everything went great; they even got an IV on the first stick!
They got a good sample and no problems with the sedation.
In addition to his bone marrow biopsy, they also did his routine lab work.
We're excited to say that his lab work was almost back to normal!
Now we wait; about a week and a half.

But while we wait, we celebrate!
We celebrate a faithful God...

He knows exactly how bone marrow works... He made it
He knows exactly where Ethan's journey will go... He planned it
He knows exactly what is good for us... He gives it

Journeying On,

March 15, 2012

Thankful Thursday

It's okay to be jealous of this awesome camera strap

made with love by a dear friend:)

E & A have been on their share of medication over their lifespan

This week we were able to discontinue the last of the prescription meds

Sweet rest

Last year I dug up these bulbs from the end of our driveway

I threw them in the backyard on the stick/leaf pile

These flowers worked hard to survive; even thrive

Thankful for the reminder that where God gives life He gives the ability to thrive

Even if it's from the dump pile

A few (okay several) weeks ago I forgot about our double stroller parked behind the car and backed over it:(

Thankfully it only needed a replacement wheel, which came today!!

This is one happy momma!

Journeying On,

March 13, 2012

Laugh Hard

Remember those times when you can't stop laughing
When you're laughing so hard your eyes water
and you can barely catch your breath
Its refreshing, even if you're exhausted at the end

I know lots of people that say it's good to have a hard cry
But maybe it's time to have a good hard laugh

I've been learning about this let-your-hair-down, fall to the ground laughter
Its been on display in my living room floor this week

I can't even remember what caused it

Laughter isn't bound by occasion or audience
It just comes; ready or not

And it brings great joy and refreshment
Planning on being ready so an abundance of joy can be reaped

Journeying On,

March 8, 2012

Thankful Thursday

Me: "Ethan and Addison, what are doing?"

Both: "Praying Jesus song!!"

Thankful for little people that love to hear the name of Jesus

A sunshine day to ride/walk with friends

Our dishwasher died this week. Wouldn't budge.

Spent a day praying about it before I unloaded the dirty dishes.

Checked the breaker; it hadn't popped.

I flipped it anyway with a whispered prayer

It came back on and has been working beautifully since:)

A friend gave me this lens cap leash (I'm not really sure what its called)

I didn't know what I was missing! Love it!

I've been looking for a long stick to attempt a pinterest project. I had resolved to dig in the woods at my parent's house. Not my favorite idea, but I needed a stick/limb.

Thanks to some strong wind this week, a few fell in my backyard:)

Thankful,

March 6, 2012

Another Biopsy

For months now we have been celebrating a very miraculous season of healing for Ethan.

I never want to stop celebrating this time, even if his health changes.

In the last month Ethan's blood work has been a little abnormal. We've bumped up his lab work to every 2 weeks instead of monthly. And now it's time for another biopsy. We had planned in December to have it repeated around March or April, so with the questionable lab work we're moving forward. This time he'll have his bone marrow biopsy in the outpatient clinic at Children's in Knoxville instead of driving to Vanderbilt (a blessing).

His biopsy is scheduled for the morning of March 16th and then we'll wait. Something I've learned is inevitable in the medical field, yet I'm still no better at it. They'll send the sample to Vanderbilt for testing and it could be up to ten days before we have any results back.

I am completely sure that God will provide. He'll continue to provide miraculous healing in Ethan's body or He'll provide enough grace and strength to sustain us in what is to come. It is no surprise to Him, because it's God's plan A.

Journeying On,

March 4, 2012

Scar Tissue

It's no longer surprising to me to get my children up in the morning and realize I've fed the bed instead of them. They used to wake up when they realized they were sleeping in a puddle of nasty smelling formula, but they sleep right through it now. I know.... gross! The other morning I found little man like this, only when I started peeling of stiff jams I realized there was no g-tube and where it should, there was now a very small hole. I made a quick attempt to put it back in, but I knew it was useless. His body had already started healing itself (which is amazing). My best guess was that it had been out for about 8 hours.

(Warning: I took pictures)

And of course this wasn't during normal office hours, so off to the ER we went. I would be lying if I didn't say the thought of not putting it back in crossed my mind. What if we just left it out for a few days to see if it would help his appetite? (something people ask me about doing rather frequently) But I knew that would mean another surgery to replace it. So even if we had to put a smaller one in, it was better than surgery.

They started four sizes smaller and slowly worked up. He was a trooper. They would put one in and pull on it from all sides to try to stretch the hole. Then they would do the same with the next size up until finally....

It was back in.

The nurse asked how he could have slept through pulling the balloon out. The balloon is at least seven times the size of the hole. It should be painful; awakening pain. But it's not to him....anymore. It was the first ten times he pulled it out, but now that it has been in for almost two years, it's all scar tissue. The scar tissue has numbed the nerve endings. He doesn't even know it when what he needs to survive is gone.

Is my heart like this? Have I become numb to the presence of Jesus mightily at work in my life? Oh, I pray not. Do I feel it when I pull away from what I have to have to live? For isn't it better to feel pain than nothing at all? Desiring for this heart, no matter how much scar tissue, to never stop feeling my desperate need for Jesus. I need his life giving presence to fill my heart, my home, my life.

You make known the me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.-Ps 16:11

For this is where joy is found; indescribable, sustaining joy!

Journeying On,

March 3, 2012

Ponytail

A new look for little miss.

She wasn't sure about the new look at first.

But she was a mess and needed a change.

It took her a little longer to recognize herself in the mirror.

But once she did, she liked the new.

Always takes a little while to adjust to the new, the different....

Even if its just hair:)

PS-Why does she look like she's 5?! Looks and acts like such a big girl these days

Journeying On,

Thankful Thursday

So it's not that I wasn't thankful on Thursday, in fact I was most thankful for Thursday to be over;)
But here's a few other things I am so thankful for...

Ethan and Addison get two of these "stickers" every month

This week the both got their last RSV shots!

Therapists-I've been reading some other preemie mommy blogs this week and have been reminded how blessed we are to have the amazing therapists that we've had!