Posted (Tina) in All Posts on March-3-2009

Ella has to be feeling better. She has been in such a good mood.

She had both OT and PT today – her first sessions since the procedure last week. Both therapists mentioned that they thought she looked better overall; her color, her behavior, etc. We think she looks better too, but it is always good to hear from someone that sees her regularly but not every day.

The OT session was still difficult, but we moved her in front of the TV with Mickey Mouse Clubhouse playing and that seemed to distract her quite a bit from the feeding task at hand. She still had her meltdown moments, but dealt with it a lot better than yesterday.

The PT session was enjoyable – she was smiling a lot. It is great that the SVC procedure had minimal down time for the Bun. It is nice to see her getting back into therapies after only a few days.

Her weight was up a tad this morning to 9.27 kilos, so we see that as a sign of improvement. We’ll see what happens over the next few days.

Not much else to report, except that she is a ham! She loves the camera and was posing throughout the day.

I read this poem that was posted on another blog of a mom that is getting ready to have a baby diagnosed with CDH. It is such a good reminder of the truth.

Who Holds Your Hand?

The journey lies before you,
The path remains “unsure”,
And there are times you question,
All the things you must endure,
Others may have walked this path,
But still, it’s not the same,
You say Lord, haven’t I done right?
You wonder…who’s to blame,
You say, Lord, it’s too difficult,
This desert, I must tread,
Why can you not give us,
A different path instead?
I know the plans I have for you,
God tells me, carefully,
My plan is not to harm you,
Just keep your eyes on me.

The very first step, which you take,
Into this sinking sand,
Was laid out for you long ago,
And set by my own hand.
And so, I set my feet ahead,
Doing what I must,
Trudging into the unknown,
And giving Him my trust.

The sand feels warm beneath my feet,
The day grows hot and dry,
I walk forward, my eyes on him,
Not stopping to ask why,
And little do I even know,
That others watch me too,
This trip a testimony,
Of all that God can do.

But I am growing weary,
Thirsty, worn, tired,
Trying to remember,
All the times I’ve been inspired.
In the middle of this desert,
I’m losing my momentum,
God says, place your thoughts on my Son,
Remember why I sent him.
Because He walked this desert,
Because He suffered too,
Because He knows and understands,
The pain your going through.

As others watch your journey,
Your strength gives them new hope,
They see Me in your struggles,
And find new ways to cope.
Not looking, you will find me,
Within this sinking sand,
Know who walks beside you,
Know who holds your hand.

~Stephanie Husted, July 2008

Joel Snyder on March 4th, 2009 at 2:27 am #

Ella, You are doing so great and I must say that just looking at your pictures I notice the difference in you since your SVC procedure. I hope you are enjoying the great weather. Please keep up the steady progress with your OT and PT sessions. Love,Grandpa!!!!!

Chambers Family on March 4th, 2009 at 8:11 am #

WOW. I would have to say — just in pictures she looks so much better. Yeah for an open SVC.

Jennifer Harris on March 4th, 2009 at 8:28 am #

Ella, we are so pleased to know you’re feeling better and your facial expressions are priceless. You are a little angel sent by GOD and we’ll continue to pray for you.

Jen on March 4th, 2009 at 9:47 am #

I’ve been following your blog for a long time, and the last blog or two I’ve opened up, I’ve also thought, “wow, Ella looks so much better!” I’ve been praising the Lord with you 🙂

The Wiliams on March 4th, 2009 at 9:48 am #

Was blessed by the poem…. looking good Ella Girl!

Fran Jarrett on March 4th, 2009 at 11:39 am #

Ella, love your pictures with Supernanny, Kelli. Especially the one where you two are practically nose to nose…so cute!
Happy to hear that you are feeling better Ella and that things are going well with the PT and OT.

Vicki/CO on March 4th, 2009 at 9:45 pm #

Oh, my goodness, I think she looks so much better, too, and she has always been beautiful…but there’s a new sparkle, a new glow…thank you, Jesus! God bless all of you!

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