There's no way to sugar-coat this. Abby is in respiratory failure. Her health has declined over the last few months to the point that her tiny lungs can no longer sustain her. None of the "bandaids" they have tried have done much, including oxygen. See, it's not an oxygenation issue....it's that her lungs are more or less deflated. Giving her oxygen doesn't really help that. They're using it to get her levels up a little higher when she is sitting, but it doesn't seem to be helping at all when she is walking. We haven't even attempted stairs yet.
We have had lots of serious conversations with our team here and at CHOP. Their dedication and sensitivity in all of this has proven to us once again just how blessed we are to have two fantastic teams working with Abby.
Because our plan hasn't been finalized yet and seems to change every time someone walks through the door, we aren't quite ready to share publicly. Once there is a solid plan in place, we will certainly let everyone know. For now, we truly appreciate your prayers, love, support, purple thoughts, and pet photos!
Abby's body is tired, but she's still so full of life and feistiness. Just today, she told me to "slow my roll" when she thought I was getting ahead of myself in a game and she exclaimed, "I still got it!" When she passed a word list. 🤣😂. If she isn't giving up, neither are we.
My heart is breaking for my girl, but I know that God is in every detail of this.
Even If...
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My heart is aching for all of you. I know that Abby has fought a tough battle, and you all are in my thoughts and prayers. I am positive that God has wonderful plans for Abby and the rest of you too. Love to all of you.
Dear God, please don’t take Abby Home…. Not yet, not now, not when she still has so much Life ahead of her to live….
Keep us updated when you can!! Hugs and prayers!!
‘Keep on keepin’ on like a bird that flew’ --Bob Dylan
Peace out, Mary Lou {formerly known as ‘Raelyn’}