I’m posting earlier than my usual midnight post since I know many of you are waiting and have been praying earnestly. Kayleigh has had a very busy day. We’ve met with physical therapy and occupational therapy three times today working to get everything we need to come home. Let me tell you, those ladies went above and beyond to take care of us. We are so thankful!
Kayleigh also had a speech and swallowing consult. They were very helpful about how to help Kayleigh keep on eating and drinking the things that she loves. As things progress with this disease eating become hazardous, we want to avoid that as long as possible. Thankfully, we can call any time to get help and ask questions.
We also met with the surgical nurse practitioner. Kayleigh is going to have a port placed tomorrow to make IV access much easier at home. Since the only places IV’s work well on Kayleigh are her little hands, they get overused and abused. The port will make it easier on her as well as any home health staff.
Kayleigh also had an EKG where we saw our favorite EKG guy. He always makes her smile. And she met with Child Life too and did some fun crafts.
Finally, we headed down to MRI. Today was busy so they were running way behind. As always, Kayleigh was a champ. She watched her movie and held perfectly still. I sat with her and read my bible and prayed. I prayed hard for miraculous healing, but none of the verses I read were confirming that. I just kept reading about trust, over and over – and waiting patiently on the Lord.
Somewhere in that 90 minutes my heart found peace. Not because I had a revelation from God, not because I felt that He was going to heal Kayleigh right now, but because my heart recognized that no matter what, God’s plan is perfect. Our job isn’t to know what God is going to do. It isn’t for me to know right now if He is going to grant healing on this side of heaven or the other. It’s my job to wait patiently on the Lord. To wait and see what He is going to do. How He is going to answer our prayers. I told you I knew God was going to show up today, and He did. It wasn’t bright and flashy, it was still and quiet. It was perfect.
Our wonderful Doctor stayed to talk with us after the scan even thought it was well after hours. He confirmed our worst fears – what we were expecting, that the tumor has indeed progressed. We discussed options and future plans. We have a meeting tomorrow with more of Kayleigh’s team. We have most of the plan in place. Once we have the opportunity to sit down and discuss the plan with Grace and Cole we will share more. We just don’t want anyone inadvertently alarming them with too much information or unintentional misinformation. We have spoken with them about what Kayleigh is facing and they know what to expect, we just want to tell them everything ourselves and in person.
For now we need our prayer warriors to stay on the warpath. Continuing to pray. Continuing to ask God for a miracle. As I lay in this hospital bed with my precious girl I am thankful for another wonderful day. Just because the news wasn’t good doesn’t change the fact that we had a good day. So much of our lives can be changed by the way we choose to look at things. While we cannot change the circumstance we can change how we respond. No one would blame us for yelling, screaming, and throwing in the towel – but that is not how we are choosing to react. We are choosing to trust, no matter the outcome.
Our God is so good. These are my verses for you tonight…
Job 2:10
10 But Job replied, “You talk like a foolish woman. Should we accept only good things from the hand of God and never anything bad?” So in all this, Job said nothing wrong.
Job’s wife was attempting to stir up despair, yet Job would not listen. He chose to trust God. And God honored Job for his faithfulness.
Psalm 27:14
“Wait for the Lord;
Be strong, and let your heart take courage;
Yes, wait for the Lord.”
No matter how things look, we are going to wait patiently on the Lord. All will be made right in His perfect timing.
Until tomorrow,
‘Carrow💜
Thank you Jesus for the faith given to this family.
Each of you are in my prayers! As you said God will heal her on this side of heaven or the other , But we know that God is in charge. Each of us are only loan through this earth for short period of time compared to eternity. I pray that God will give you strength and peace.