Katy - Re: CPT question

[Guest guest]

Katy,

Leila was diagnosed at birth with meconium ileus, then at 2 months of

age she was also diagnosed with alpha-1 antitrypsin deficiency. She

stayed in the NICU for 15 days before we could bring her home. I

came home before Leila, of course, and explained to Hadley that Leila

had a tummy ache, but that she would come home soon. My parents came

to stay with us during that time, and it was difficult because I was

away from Hadley more then I had ever been. Once we brought Leila

home though, there was no problem.

We have never told Hadley that Leila was sick or had something wrong

with her, but we have explained that everybody's body is different

and has different needs. This is not to say I will hide Leila's

genetic defects, but I don't wish to perpetuate the idea that Leila

is sick. At first Hadley would say " I used to take enzymes when I

was a baby " , or " I got CPT when I was a baby " , and we explained that

she never needed those things because her body didn't need them.

Then we would help her understand that she did nurse like Leila does,

and wear diapers, and crawl, etc. Leila does get lots of attention,

but I'm not sure she gets any more then Hadley does. Hadley attends

most doctor appointments with us and loves the stickers they hand

out. We've been very lucky - Leila has not been admitted since her

initial stay at birth. She has required a couple courses of oral

antibiotics for a cough, but other then that has been healthy.

Hadley will even stroke the top of her head and kiss her while

getting antibiotics (which Leila hates and trys to spit out). The

girls are not always angels together, but I haven't had too many

jealousy issues over attention.

I'm sure the month Austin spent away from you was extremely

difficult. When did Piper get her diagnosis? I agree with Grandmom

Bev - get Austin involved in every way possible. Empower him as the

big boy who cares for his baby. This may solve some jealousy

issues. I've also found it helps to highlight all the things Hadley

can do that Leila can't. I agree that even in the best set-up it is

frustrating at times! Consider picking up a copy of the book

entitled " Siblings Without Rivalry " by Faber & Mazlish. It's

excellent and will offer some advice as to how to help recognize

Austin's feelings and constructive ways to deal with them.

Whew! I'm long-winded today! Feel free to email me privately if you

want - kabrowder@....

Keeley

mom to Leila, 11 months tomorrow wcf, and Hadley, 3yrs. nocf

> > Lately I have been having trouble doing my daughters CPT. She is

> 11 months old and getting her to be still is nearly impossible.

Does

> anyone have any suggestions?

> >

> > Katy

> > Mom to Austin almost 4 w/o CF & Piper Marie 11 months w/CF

> >

> >

> >