Her Krabbe test had abnormalities, but they think that it is indicative of a psuedodeficiency, not the actual enzyme deficiency. Whatever that means.
They still think she has an enzyme deficiency of some type, and they still don't think there is anything they can do for it.
We are still in the hospital, trying to get food to stay inside her so she can gain weight. Poor baby girl. She will have a least one surgery, maybe more, in this coming week to see what is going on inside her and to put in a gj tube, most likely. Unless the Trans-pyloric tube doesn't work and then we have to go to IV nutrition. My poor, sweet girl. She's still smiling, though. Such a sweet baby. I hate watching them poke her and stick tubes down her. I hate watching her scream.
Praying they'll figure out her feeds and we can go home very very soon.
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Continuing prayers for guidance and HEALING!!!!!!! I so wish I could be there in person to wrap my arms around you and give you hugs!!!
ReplyDeleteBeth,
ReplyDeleteI am so, so sorry you are going through this. I am so sorry you are having to watch your baby suffer. I am praying for you both often!
Kim Wirgau
I have never met you, but I have been following your blog since July. I wanted to let you know that I am praying for healing for Eden and I hope that her condition improves so quickly. I also pray for peace for you, I cannot imagine what you are going through.
ReplyDeleteYou are both in my prayers.
Praying for COMPLETE healing and God's Hand of peace on you both.
ReplyDeletePraying for success with the GJ giving Eden relief and nutrition! It is amazing how resilient children are, so glad that she is smiling and that she has the love of her momma by her side.
ReplyDeleteBeing a mommy is hard work. You are doing a good job.
ReplyDelete