We are heading back to Cleveland Clinic on Monday February 24.
Chaia will be sedated and a G Tube will be placed in her stomach and a new adventure will begin with administering meds (still on 10 round the clock meds). The plus is that the tube in her nose will be gone and we'll regularly get to see her whole face for the first time in a couple years.
She will also have an echo, a CT scan and an exam of her optic nerve while she is out.
The echo will tell us how her heart is doing. (Pray Ezekiel 36:26 with us!)
The CT Scan will tell us if the calcifications are worse...better...or unchanged.
The optic nerve exam will make sure that all is as it should be in neuro world since she had the spinal tap to remove pressure from a pseudo tumor she had.
Hoping to be there a night and then come home.
In some regards this is nothing new for us. But in other regards, we will have new challenges and the risks of sedating a kiddo with heart failure issues is always heightened.
But...in case we've forgotten. She is not ours. She is His.
She's getting bossy. She is repeating pretty much everything Shaina and I say. She has now mastered 21 of 26 letters of the alphabet! (Who's bright idea was it to name one of them "double-u"?? She is walking with help. She is fascinated by the toilet and whenever anyone goes upstairs she announces "pee" or "poop" assuming that is what they must be planning to do.
I love her a ton. She does things that need reprimanded...and I go to bring the hammer of discipline and she looks at me in some cute fashion or does something hilarious and tries to weasel her way out of the hammer. She has a storybook Bible and flips to the story of Paul being blinded and then his sight being restored and she says "Paul...see". She doesn't give a rip about anybody else in the Bible except Paul.
She does so much that makes me want to cling to her.
But we are reminded of the calling.
May her life be leveraged for the glory of God, indebted to the grace of God and captivated by the heart of God day after day.
And may my hopes and dreams stay out of her way.