B hasn't had any spells since this morning around 7am. We went to see our pediatrician today. She also believes what we are seeing are seizures. We will go back to see the Palliative Care doc we saw on Monday for help with that. The doc increased her feedings and gave us instructions for how to keep increasing them so that she keeps gaining. Even though we don't have a final answer on the seizures, I am thankful for none today and that we are on a road to fixing them.
THANK YOU ALL FOR YOUR PRAYERS!!!
Today we added 3 new things to our list of firsts:
1. H and I took B somewhere without another adult. He graciously offered to sit in the back and watch her so we could get out while Adam worked. We went to lunch! A date with my 2 babies...it was great! I didn't eat and held B...but still great! A new chicken wing place opened right by our house, and H was eager to test it. He gave it the thumbs up...had something called suicide wings...the smell was too hot for me!
2. We had a few minutes before our doc appt so we hit up Target for 15 mins...AND left empty handed...make that another first! We strolled B, and I didn't freak out about germs!
3. The pool in our hood is open. We love to go late but before dark...we went at just the right time tonight. H got to swim and Adam, B, and I hung out in the shade with our neighbors.
A few pics of B from yesterday and today...thanks SM for the tip:
I love all the faces she makes.
A friend sent me a link to this song today...it pretty much sums up how I feel.
Praise You in this Storm by Casting Crowns:
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
[Chorus]
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
[Chorus]
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
C
Catherine & Adam, I'm sitting in my den in Atlanta with one of my dearest friends who is visiting from Louisville. She's been praying for you since before Battley was born because she knows your sweet friend Sarah Triplett Hill who is in her church. How we discovered this, I'm not sure, but both our jaws dropped to our shoes. What a God story!! Her name is Ann Llewelyn, and you couldn't ask for a more faithful prayer warrior. Much love!!
ReplyDelete