Not much to report today. Chaia is stable. Had a good day. Was awake a ton, and calm. It is amazing the roller coaster from thinking you may have hours left with your child to being allowed to dream again about days, weeks, months and even years.
Next steps are to wean off the cpap. If she can do that, then we'll see if her body is again capable of self-sustaining. So many hurdles...Weaning Milrinone and Versed and Fetanyl and then obviously the Pomidronate needs to work at de-calcifying her body, which we won't know whether this is happening significantly for at the minimum another month.
Again this journey has essentially 9 out of 10 scenarios panning out that are bleak. But we have a God who likes those kinds of odds.
Short term. We rest and go back and enjoy Chaia for the weekend and see if we can keep hangin' on. Today was hopeful. And Romans 5 talks about how suffering if done well, will lead to hope. It is very hard some days to do this well.
Tomorrow, if things work out well. I will introduce you to a friend of mine.
11 comments:
May you all get rest tonight.Praying for a good day tommorow.:)Thinking of your sweet family here in KY tonight.
Praying for endurance for all of you. Keep walking the walk. <3 Keep counting each and every blessing. :) "May you be strengthened with all power, according to His glorious might, for all endurance and patience with joy"-Colossians 1:11
The McCune's in Smithville
Now the day is over,
Night is drawing nigh,
Shadows of the evening
Steal across the sky.
Now the darkness gathers,
Stars begin to peep,
Birds, and beasts and flowers
Soon will be asleep.
Jesus, give the weary
Calm and sweet repose;
With Thy tenderest blessing
May mine eyelids close.
Grant to little children
Visions bright of Thee;
Guard the sailors tossing
On the deep, blue sea.
Comfort those who suffer,
Watching late in pain;
Those who plan some evil
From their sin restrain.
Through the long night watches
May Thine angels spread
Their white wings above me,
Watching round my bed.
When the morning wakens,
Then may I arise
Pure, and fresh, and sinless
In Thy holy eyes.
Glory to the Father,
Glory to the Son,
And to Thee, blest Spirit,
While all ages run.
So Glad she had a good day! Thank You God for this progress! Will contine to kneel for your beautiful lil angel!
Hugs and prayers to your precious little one and you all. Still praying and Thanking God for a good day. I like the saying.. What if we wake up tomorrow with everything we thanked God for today. It's nice to be thankful and let God know. Praying each day shows improvement.
Praise God!
Yeah God! Have a good weekend with your beautiful baby girl! We're praying around the clock for all of you. Continuing to have faith, hope, and praying for strength and rest for all of you. Love, Bruce and Sharon
Enjoy her, love her, sing to her, read to her, rest in her presence today! We well keep those prayers going that each of those hurdles will be jumped with "Chaia" force, because God knows the pleading of our hearts for her and both of you.May God continue to give you HIS peace. love, Uncle Glen and Denise.
Enjoy your weekend with her. We'll keep all of you in our prayers. Thank you God for each day. God bless Chaia Joy! Love, Kevin & Rhonda
Hope you have a good day today folks,we are all thinking of you.All of Ireland are rooting for ya.
I will pray this for you ALL today:
Isa. 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
May God's blessings continue to pour ON you as they have poured FROM you!
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