Tuesday, December 21, 2010

A Diagnosis

so......... we got the results back from the biopsies and blood work and the diagnosis isn't good.  I am still trying to understand and wrap my head around everything that i have read and heard over the last 24 hours but here's what i know.
Roe has a disease called eosinaphillic esophagitis it is a disease of the white blood cells that is closely related to food allergies.  What i have gathered is that people with this disease are so sensitive to foods that after time their bodies begin to reject all food.  Roe had lost weight since his last appointment at Nemours which is not good.  We are now at the point where we are having to give him "medical food",  they gave us drinks and a powder that i can mix with juice to make a sort of rice cereal/ mush. We have to get weight on him and this, right now may be the safest way.  The real disheartening news that comes with this diagnosis is that many times a feeding tube is inevitable.
This is not what we were expecting when we went to talk to the nutritionist yesterday.  We go back January 24th to have extensive allergy testing done to try and find what we CAN feed him safely.  We will also see the GI doctor and he will be weighed.  If we have been able to get some pounds on him at that time then we are hoping to hold off the mention of the dreaded FT.
Please pray that these medical drinks will help.  This is something that he will not be able to grow out of. he will be on a highly restricted diet forever :(  poor baby.
I guess right now our prayer will be for some weight gain between now and the 24th.

2 comments:

Abby said...

praying for you guys, bebe!

Allison Vogt said...

Hey Bebe. I will pray for some good news to come from your next appt. Poor Roe. Please let us know if we can do anything - or please let me take Kirby off your hands during the appointments. XO