Sunday, February 4


******Saturday's update******
(DAY 6 without holding my Gracie Ann)
Gracie Ann got another bath today.......
 I can smell that baby freshness from here
Her bath time calmed her so much, as Gracie Ann's baths give her so much comfort

but a bath was not Gracie Ann's only special treat....
she spent a few hours with her two sisters but only one brother because Isaac is too young to visit her
 Madison, Savannah, and Nicholas and Gracie Ann  

We got to faceTime again was awesome to see her sweet and precious face
She opened her eyes when Isaac was talking to her.....he calls her his little Sweetie Pie
She responded to my voice as warmed my heart to no end!!! I sent one of my t-shirts that smelled like me to the hospital, for Gracie Ann to have next to her.

Here are some pics of Jeremy and I FaceTiming and also Isaac and Daddy FaceTiming
 Isaac was so very excited to see his daddy
I miss my Love so much......Jeremy left for work on Monday, and never returned home.  He has been going strait from work to the hospital to stay the night with Gracie Ann.  
Madison has been with her from morning until Jeremy arrives.

So today, all three older kids went up to the hospital to relieve Jeremy so that he could come home to see me and Isaac.
 I miss Jeremy so much.....I am not WHOLE without him.  Isaac was over the moon with joy to see his daddy

As Jeremy walked in the door, he had our wedding song pulled up on his phone and he asked me to dance 
of course I said YES!!!
(Our wedding song was "I Will Be There" Steven Curtis Chapman)
And we danced....and we sang each and every word to each other

But what the sketch above does NOT show....... is Isaac in the middle of our embrace, dancing with us
(Yes.......this kid with the Bristle Block container on his head)

With tears welling up in both of our that exact moment we confirmed, yet again, that our life is the best ever....
We would not trade ANY of our crosses....We would not trade the light ones.....or EVEN the NOT so light ones.  God will guide us no matter WHAT suffering comes our way
I am absolutely honored and completely blessed to have my precious Gracie Ann to worry about

All of our crosses are an abundance of blessings from our Lord.
We feel very unworthy and spoiled to see Him working in our lives so intimately....
It forces our eyes and our hearts to be fixed on Him, Who is our everything!

We know that He will give us the Grace to handle whatever is to come....I calm my fear of the unknown, with this fact! He has gotten us through EVERYTHING that has crossed our path so far
Our Father has showered us with everything that we could ever want.....most importantly, He has given us so many opportunities to Trust in Him and to glorify Him through our lives
Jeremy took Isaac and I out to lunch
 It was such a blessing to have this time together as husband  and wife Daddy and Mommy
 This little ragamuffin brings us so much joy
After our meal out together, as Jeremy was driving Isaac and I home..... my body began to feel empty as we pulled into our neighborhood

Boy do I miss my little bunny....I am sad in the house without her home

Thank You Jesus for giving us this blessed and much needed opportunity that Jeremy and I got to spend time together, strengthening each other and supporting  each other, as only a married couple can....we understand our family and are both experiencing this same suffering.
Sharing our hearts and our worries is so important, especially while we have to be apart right now

*Gracie Ann had a horrible night.  She was fussing and went into one of her horribly severe seizures......the nurses administered ALL THREE of her emergency seizure meds, but none of her meds rectified the situation (one med ws even administered directly through her IV)
*She seized for hours

*She finally ended up tiring herself out and falling asleep.  

*These severe seizures really affect her brain developement...i.e. she might forget how to suck on a lollypop (she loves those...of course, they are sugar free)
But, she could also forget how to swallow.....which is Jeremy and my greatest fear.  Many children with this severeity of brain damage, die by aspirating on their own saliva
*Adding to her long list of diagnosis....Gracie Ann has pediatric she just stops breathing for a number of seconds between every second or third breath.
*It's pretty concerning and heart-breaking
All in All......
*She was put back on the oxygen mask this morning, but has since, been switched back over to the nasal cannula, as the doctor is trying to wean her off of the oxygen
*Dr. Dambro is requiring that Gracie Ann is at only 1/4 liter of oxygen, before she can be discharged.
*Right now she is on 3 liters
*She is also still throwing up quite often
*Jesus, please oh please oh please heal my baby

 These thoughts are written in my retreat journal.
Beautifully spoken to me by a Holy Priest

Hope allows me to see my current struggles in the light of Christ 

My faith should flow out beyond myself

My heart was created to be filled with Divine Love, But the capacity of my heart is too small, because of human sin, to receive this Divine Love in it's fullness. 
I desire and pray for acute awareness of sin (in myself) so that I may open up my heart and grow closer to God
As my earthly self, attempts to convert my merciful Jesus is stretching my heart to grow bigger, through my suffering.....making room for me to experience a greater Divine Love
Me and Jesus

If I take time to stare into the eyes of my children....I will be filled with hope, beauty and love. 
I will truly know My children, as I gaze into their precious eyes... as their beautiful eyes are the windows into their souls. 

"Heaven is eye contact with God"
On earth, when I look into the eyes of my loved ones, I am experiencing a taste of what Heaven will be like. 
I can't wait to meet my dear Lord Jesus someday! I dream about how absolutely wonderful and amazing and serreal it will be.....and then I realize that whatever I am imagining is not EVEN CLOSE to the beauty and glory and complete and total joy that I will human mind is way too small to wrap around even the smallest fraction of what seeing the most Beautiful Face of my Jesus will be like

I pray for an increase of hope. I will serve always for Christ because then my labors will never be in vain. I will focus on hope in all that I do. 

My God is my Father and my Provider

Psalm 8:5
Our Lord catches every tear we shed in a bottle. He remembers our suffering 
I trust You God even, when Your Perfect and Loving Will does not make sense to me 

My peace is in Your Will
I will surrender to You Lord, fully and joyfully

In my brokenness, because of sin....God uses that brokenness inside of my body to redeem me
My sufferings are my earthly refinemet. My struggles are put into a fiery furnace and will come out as beautiful jewels

Psalm 73:26
“Practicing the presence of God”

Psalm 131
"I do not occupy myself with things too great or too marvelous for me, but through prayers and my valuable sufferings, I have calmed and quieted my soul, I am like a young child carried by his mother. I am content like the young child being carried."
(This child has blind trust in his mother's arms.....I have blind trust being carried in the Mighty Arms of Jesus) 

Romans: 5:3-4
"I know that suffering produces perseverance, perseverance produces endurance, endurance produces character, and character produces hope and hope does not disappoint us"

We rejoice in our hope in glorifying God.

My Dearest Jesus,
I beg of You to heal our little Gracie Ann.  I know that we are on borrowed time with this little miracle, but I am JUST NOT READY to lose her......But I must end by saying
"Not yet my will, but Your Will be done"
kerry ann
The prayer of Jesus
“ Father, if You are willing, take this cup of suffering away from me. Yet Not my will, but Your Will be done."
Luke 22:42

Thank you all again for storming Heaven for our little Gracie Ann.  We love her so much and will forever be grateful to you for your petitions on her behalf