Still no official diagnosis, but the doctors feel comfortable in saying she has MLD.
We are still in the hospital. She has lost weight now since she has been throwing up. They think her tube is causing a blockage making her throw up. So she is connected to suction to try and keep her from getting sick. But tomorrow, if she still isn't less nauseated, she will be started on IV nutrition and sent home.
Not the greatest plan b/c of the long term effects of IV nutrition on the rest of her body, but we're pretty much out of options until we can get her mic-key button in 6 weeks.
Please keep praying for my sweet girl!!
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Still PRAYING!!!!
ReplyDeletePraying that she will stop vomiting, start gaining weight and that her little body will be completely healed.
ReplyDeleteI'm glad you at least get to go HOME!!!! Hoping you can get that new tube in soon.
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