Two weeks out.

Two weeks out from getting new lungs and this kiddo is making great strides. 

She has been on a trial for over 36 hours now where she is initiating all of her own breaths. They have weaned her oxygen support down to 25% (room air is 21%) and she is getting oh so close to weaning from oxygen and ventilator support. She has accepted all challenges with smiles so far. 

Parson had a BIG day yesterday as doctors and occupational therapy agreed that she could try baby food for the first time.  The trial was an amazing success and so far bananas, applesauce, peaches and carrots are Parson approved. 

Mmmmm Carrots.   A glorious mess. 

Doesn't every girl wear gold beads when trying baby food for the first time. Thanks for the food Cara & thanks for the beads Amanda. It was a great day to be Parson. 

As the doctors rounded this morning, I asked them to repeat a phrase that just never gets old "Parson is an 11 month old female with Filamin A deficiency that is status POST TRANSPLANT."  It is the "status post transplant" that gets me every time. Because for so many months of rounds before it had been "awaiting transplant." What a difference two weeks makes. 

"Rejoice in The Lord always; again I will say rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus"- Philippians 4:4-6 

Because of the amazing gift of our donor, Parson is breathing easy and so is her Mommy. Patience has never been my forte' but I gotta give full credit where it is due. I wasn't patient in the flesh - not one bit - it was only possible through prayer and the presence of God in my life. Now don't get me wrong, I will never forget the long nights waiting and watching as Par struggled to breathe.  Thanks to Him, He allowed me to get pretty good at the patience thing.  I have experienced peace like no other - only from Him. Now that we are on the other side "post transplant", I have enjoyed a different peace. The peace of progress. The peace of meeting new milestones daily. The peace of a happy baby that can now breathe. These last two weeks POST TRANSPLANT have been, oh so sweet and peaceful. 

Peace I leave with you; my peace I give to you. Not as the world gives do I give you. Let not your hearts be troubled, neither let them be afraid. - John: 14:27

My other little warrior, Darby, survived sight words & kindergarten and is enjoying her first real summer. She hasn't slowed down yet and has traded in her school clothes for a bathing suit. She is most happy underwater. 

Darby gives a thumbs up to summer 

 

Another glorious mess. 

Darby & O'Riley are loving summer

Par's buddy, John the firefighter, sent her this cute onesie and she is repping for the Houston Fire Department today.  We love those brave men in uniform. 

Get ready Peachtree, we will be bringing our "Peace Love and Parson Blue" show  on the road soon. Peace out!