Hi All,
On Monday, Patrick and I leave for Staten Island with hope in our
hearts. We feel really good about this trip and the treatment he could
receive. We'll only be gone for 4 days for consultation, casting and CT Scan.
Hopefully, the treatment will be over a 2 week period and the boys and I can
stay the whole time. The last two days Patrick has felt better. I continue
to tube feed him and that takes away the pressure and stress of him having to
maintain his nutrition orally. Actually, it works out fine. I plug him in
when he goes to sleep and feed him all night. His color has improved a bit
and his energy level is better. I'll let you all know what they say in New
York when we get back on June 3rd. Wish us luck!
Love, Nisi
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