RE: Emma update - frustrations MARIA

[Guest guest]

,

My son Liam said that to me at around the same age. We were in a

shopping centre and Eilish was still a baby. He said he knows Eilish is

going to die. None of us had ever mentioned anything to him. I felt

like crying, and said to him not to talk like that again and that she

isn't going to die (please ). It hits you in the heart though.

liam 8 wocf & Eilish 5wcf

Emma update - frustrations

Emma's G-tube site has cleared up. It took a little while but the

steroid cream that she was put on has really done wonders for her

granulomas (the scar tissue that was forming and causing all of the

problems). The granulomas appear to be gone (on the surface anyway) and

there is no bleeding at all anymore (that actually ended a few weeks ago

now). Thats one thing i don't have to worry about ... at least for now.

Her vomiting slowed down considerably and she was down to one a day.

Unfortunately today she puked at every meal and when I gave her meds.

She

also has a fever and was really out of it today (sleepy). She did this

same routine about a month ago (it prompted a trip to the ER). I am

getting so frustrated. I just don't know what is going on and I don't

feel like her doctors know either. The kicker today was when I was

sitting on the couch just holding Emma, Isabelle came by and sat down

beside me. We started to talk and I was telling her that it's hard to

be

Emma because she always feels sick and throws up. Isabelle responded by

telling me that Emma was going to die. I was so thrown back, I didn't

know what to say. I ended up simply telling her not to say that again

that I didn't want to hear her saying that. I didn't yell and she

didn't

get mad which is hard with her these days, she has become ultra

sensitive

(she's four). It's been bothering me all night ever since she said it.

Anyway, I feel very frustrated because I don't understand what is really

going on with Emma at the moment. You would think one would get used to

all of it but this is all such a hard roller coaster to ride.

Talk to you later,

- mom to Emma 2 years old w/cf and Isabelle 4 years wo/cf

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