I'm feeling weary tonight - physically and emotionally. I suspect Matt is too, but don't want to speak on his behalf. All of this just feels like two steps forward, three steps back. Every time I feel like we may be in the clear - there's momentary respite - it seems to fall apart.
Four out of twenty-two comments tell me I can't trust doctors who don't know about EB. It's too much. I have no baseline for Jonah's care. I worry all the time. It's hard to sleep. On one side I get reassured that things look good, on the other, I get a ton of heavy, new things to worry about. It's exhausting.
I'm trying to arrange to see the ENT early next week for Jonah to get scoped. I've spoken with Geri at DebRA and am requesting that our ENT to talk to Cincinnati's ENT. Until then, we just pray and hope that things really are okay. I inwardly freak at every weird breath, funky sound, overly red blister, smelly discharge, half-finished bottle... it's too much. I want to trust that God is going to make it okay - that He's going to protect Jonah. I want to hope that God would not have allowed Jonah to survive thus far - to have touched so many lives - just to take him away. I want to think that it's just blisters, nail, hair, and teeth problems. I want what I'm not promised. I want a plan that's not mine.
I think I may take a break from blogging for a few days. I may wake up tomorrow and change my mind completely, but I just want to be sad and confused and frustrated - and I don't feel like I have any more words for now. I hope that you'll continue praying for our family. It's all I know to do. I have control over nothing else. I just pray when I can and trust that you guys are praying when I can't.
I hope you all have a peaceful and meaningful Easter. On a day when we celebrate His saving grace - His overwhelming love - His gift of hope - I pray He will show my sweet baby new mercies of a similar kind. I pray that our Sunday is coming.
Please pray for Jonah.