I’m finally leaving the hospital grounds for the first time in over a week. Baby girl said she wants soup from Panera, so mom is making it happen.
Child life services brought her some Play-doh and she is loving it. She’s using her right arm a lot more, even lifting it up as the picture shows.
Nurse Jill mentioned Annadelle is her second patient in 2 weeks with TM. She is her third patient with TM total. She said both of the other patients made a full recovery. We are praying Annadelle will be her third.
Our punkin’ is worn out from today’s activities.
She was very upset about her time with PT and OT. She is complaining of leg pain a lot, but Daddy and I are hoping that means she may be gaining some movement back there soon. She was complaining of pain in her arms prior to getting much movement back, so we are hopeful this is a good sign.
Dr. Martenz is continuing her high dose steroids rather than weening her down. He seems disappointed that she is not moving more than she is. He is also increasing her Gabapentin in hopes it will ease her pain. She was on what he referred to as the “baby dose” yesterday and said we had room to increase it pretty significantly.
We took a long walk outside today, too. We have more freedom outside of PICU so we were able to go without a nurse and venture off a bit into the grassy areas. We’ll be headed to see the fish tanks after Nurse Jeremy comes in to grab vitals for shift change.
I also wanted to share something real quick that gave me a little bit of encouragement. It is the story of Abraham and Sarah from the Bible, sent to me by my sister-in-law Heather Stephens. It is a story I came to know well several years ago when we struggled with infertility while at the ART Fertility Clinic at Brookwood. I am going to copy what she wrote so you can better understand what I am getting at:
“I just felt like I needed to share this with yall. I have had 3 sermons/bible studies in the past month about Abraham and Isaac and I do not think it is by chance. Of course Annadelle has consumed my mind since she got sick and today I was praying for her and God reminded me of Abraham and Sarah and how she was barren and God promised her a child and he fulfilled his promise just like with yall. You had a hard time having her but God provided. But then God sent Abraham to take his only sons life but the provided the ram. God just wanted Abraham to trust Him and that is what He wants from yall which is what I KNOW yall are doing. God assured me that he is taking care of her and I myself believe he will completely heal her but I also believe God will use this as a ministry for yall. I hope all of this made sense. I love yall even though we are all 3 stubborn and outspoken LOL but family is a stronger bond than that nonsense!! Love yall and praying without ceasing!!”
I think about this story often, but especially now as I have battled it out with God asking him why He would put us through this. Why would He put our sweet girl through this pain? I have come to realize this is all part of his plan, part of our purpose, and an elaborate tool to put our lives on a different path.
Just a few weeks ago, Chris kept telling me that he felt like God was telling him to just sit still. Learn patience. Give everything to God. We fought over it. I mean, how are we going to make a living? How do we live with no money? But he insisted- God was telling him to wait for instruction. Fast forward to where we are now, sitting still and trusting God to work a miracle. We know He will give us the desires of our heart. Not surprisingly, our deepest desires have changed- exactly what God intended.