Yesterday was obviously a little rough on me. After we cut Soph’s hair, Jonathan had to head home and that’s just never fun. She was cranky after he left and just wouldn’t eat very much. It was frustrating. I decided maybe getting her out of the room would help us both. If anything it would help tire her out so she’s sleep well. There was a dilemma, though because she’s mainly been traveling around in the wagon and there was no way I’d be coordinated enough to balance the wagon with her in it and pull the IV pole. I figured, ok we’re just going to go for it and try to walk. So I put her Crocs on and said let’s go! She wasn’t super happy about leaving the wagon but, we slowly made it around our hallway and then out onto the rest of the floor. At one point she took off and I had to speed up so she wouldn’t pull on her IV line. The best part though, was every time we saw a nurse she rubbed her head and said HAIR!!! They of course were all so great and cheered for her telling her how pretty she is. She ate that up. It struck me that even though it was a hard day on us both, she is so much happier and feels better without the hair. She was so tired of it falling out and getting in her mouth, in her food, and all over everything. I was just so thankful for her positivity after a long day. She had a burst of energy and we walked for almost 20 minutes before she wanted to be picked up and carried back to her room. We got back and she requested rice and drank some instant breakfast. I was again so thankful for that. Then she cuddled up to me and started rubbing her hand over her head. She even grabbed my hand and put it on her head and said ‘It feels good Mama!’ Talk about hitting me right in the gut. My incredibly resilient little love had taken a not so great day and turned it into just what her mama needed.
This morning I woke up frustrated because her ANC is STILL zero. I’m like- come on- we are in week 3 and she’s been at zero for 15 days. Over it. So over it. Enter Aunt Jacy. She has the magically ability to walk in and get Sophie to eat. I checked out for a bit out to lunch with a sweet friend so I called to check in with Jacy. Within a couple of hours, Sophie had eaten a whole bowl of brown rice with butter, pears, half a yogurt, bites of applesauce, and half of an instant breakfast shake. I can’t explain to you the relief that came over my soul when I heard all of that. I almost cried in a parking garage walking to Old Navy. To me that represents so much more than just her getting nourishment. It’s her turning the corner and fighting back. She has been herself today. Sassy and hilarious- playing with stickers and watching Netflix. Her doctor even said that we should be super encouraged.
So today I’m just thankful to be here with my tiniest love. No matter what her ANC is tomorrow, my Punkin is starting to come back and feel better. I’d rather her start to feel better here than get sent home too early and end up with something life threatening because she couldn’t fight it off. We’ll go home when it’s time for us to go home and then we’ll tackle the next step together. Because that’s all you can do. Until then, we’ll find the blessings in waiting.
Lamentations 3:25 The LORD is good to those who wait for him, to the soul who seeks him.
1. ANC please go up
2. Fever and diaper rash stay away
3. Appetite and energy go up!
Update: 30 minutes after I posted this- she spiked a fever so no walking for 24 hours and we have to do the full fungal workup with CT, ultrasound, and nose swab tomorrow. I hear you Lord- still patiently waiting.