Update from Pennsylvania, USA

[Guest guest]

Hi everyone,

Well, today is Emma's third birthday. She has been doing okay. Her

lungs have been great so far but she has a cold at the moment. She has

also increased her vomiting again recently. She seems to have coughing

fits that end up with her vomiting. Today we were giving her raspberries

on her tummy and she was giggling up a storm and then it changed into a

cough. I told my husband, grab her and take her in the bathroom, just as

he got her there she threw up everywhere. On July 4th, she was running

around with her sister and trying to be funny she ran into the bedroom

door, this also caused her to throw up. She also is doing it quite

frequently at meals. We have all of her reflux meds maxed out so we're

not sure what to do.

My older daughter, Isabelle, informed my husband yesterday that she had

a dream about Emma the night before that upset her (she woke up and came

and slept with me) and she refuses to tell him what happened in the dream

because it frightened her so much. She is four years old (soon to be

five) so I am not sure what to think. She is a real sensitive kid and

she loves Emma a lot.

My husband is home with the girls now. I am working. It's taking a lot

of adjusting. I find I am still doing most of the stuff around the house

and getting to spend no time with the girls which I don't like so I am

trying to get him to do more during the day. He is doing fun things with

them, like taking them to the free Regal movies every week and he has to

do therapy in the morning and feed Emma four meals a day but I don't like

the fact that we switched roles and I am still the one doing all of the

other chores. My birthday was last week, I am feeling old now ... 36.

I hope everyone is doing well. Welcome to all of the new people. By

the way, we go to CHOP and we see Scanlan and Mascarenhas. I saw a

number of other doctors when she was hospitalized for dehydration and not

eating two years ago and I really liked Panitch and Clayton. I have a

friend with a little girl with CF who has been going to CHOP for years

and she said that there is one fellow in particular that is really bad

and won't listen to the parent's gut instincts. Her daughter had a

blockage and he insisted she didn't and overrode what the resident had

written on her charts concerning it. Eventually, she insisted on an

X-ray and they realized how bad it was and got it addresssed but the

fellow basically wrote her off as being a hypochondric concerning her

daughter. Anyway, she won't let him see her daughter. I don't know his

name.

Anyway, that's it for us. Talk to you later,

- mom to the butterfly girls, Emma 3 w/cf and Isabelle 4 wo/cf

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