Emma checkup update

[Guest guest]

Well, our little fat girl had a check up yesterday at CHOP. She is now

in the 80th percentile for her weight. This amazes me as she still

regularly vomits (on average at the moment of one a day). How often she

vomits fluctuates quite frequently. They actually told me that they want

me to cut back on how many calories she is taking in because her weight

is not in proportion to her height (she weighs to much for her height).

I laughed and they said, " Thought that was something you would never hear

about your child " . I said, " Oh yeah! " . Unfortunately she is still on

night feeds as she still drinks hardly anything so she needs the fluids

it provides. Emma has been having one cold after another this winter and

so far no lung problems have developed as a result. Her lungs continue

to do amazingly well, especially since she is a double delta F508.

I asked about the vest again. I finally got somewhat of an answer.

Basically they brought it into the room and tried to get her to try it.

She wanted no parts of it. As soon as they wheeled, it in she starts

saying things like, " I don't like it " and " I don't want to use that " .

Isabelle who is four tried it on and seemed to love it and found it

particularly funny how it made it difficult to talk. Emma was laughing

at Isabelle but still wouldn't try it. They are going to try and get her

used to seeing it when ever she has an appointment and try and coax her

into trying it but they indicated that if we get it to early and she is

afraid of it that long term she will use it less. They recommend waiting

a year or two. We'll see how it goes. I wanted to get it now because

like many of you recently, my husband is going to lose his job. His

company was bought out at the beginning of the year and they are moving

all of their operations to Michigan. He is lucky, he has been given an

end date of June which is when the transition to the new facility will be

completed so he is there until the end but come June, he has no job.

Hopefully, he can find something before then. I was hoping to get the

vest while he still has his job. Oh well. We'll see what happens.

I hope all is well with everyone. Talk to you later.

- mom to the butterfly girls Isabelle 4 years wo/cf and Emma 2 1/2

w/cf and acid reflux

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