Re: Re: Reintroduction and question/Gale and

[Guest guest]

; I had hydrocephalus of prematurity; it resolved and I do have temporal

lobe epilepsy, totally controlled, cf, blah, blah, still here--and

keep getting Gale's granddaughter mixed up with some one else's and

fouling up the names--no, cannot blame that one on the hydrocephalus--

Am just glad that you are back, that Abigail and the other grandkids are

hanging in, Love, n, welcome back and Gale is just the best!

Re: Reintroduction and question

,

Hello and welcome back. I have a two year old grandaughter named

Abigail. She has cf and mild hydrocephalus.

How does feel about going to school with her PICC line. Maybe

she could help you decide what to do.

Good luck,

Gale

> Hello. My name is . I have just rejoined this group after

an absence of about 2 years. I am the mother of 5 year old triplets,

andra, and Charlie. has CF. In addition to CF, my

daughter has hydrocephalus, hydronephrosis, global delays, GERD,

seizure disorder, is latex and morphine allergic, has a shunt and a g-

tube. Despite all this, she is doing remarkably well. She has

progressed further than we were ever given hope for and she has an

amazing outlook.

>

> My husband and I both work in the education field which we felt

would give us a bit of an upper hand with beginning

Kindergarten this year. We were terribly wrong and have, in turn,

gotten quite the education ourselves. It seems that school systems

feel they can do whatever they want with special needs children who

belong to their employees by holding our jobs over our heads.

Unfortunately for them, I am rather stubborn when it comes to what is

best for my children, so it has been one fight after another this

year in regards to 's IEP.

>

> Now that I have sort of reintroduced myself, I have a question.

just returned home from a week long hospitalization due to a

respiratory exacerbation. She has a PICC line for at least the next

two weeks. We are unsure of whether to allow to attend school

with the PICC line. This is her first PICC line since entering

school and it is not something the school is familiar with. Our

school system does not have school nurses, so we do not even have

that to fall back on. does have a full time one on one aide

who also is an LPN and very knowledgeable. My worry is the other

students and just the everyday things that occur in school. What are

your opinions on this? I appreciate any help you can provide.

>

> - mom to 5 year old triplets - 1 w/ CF

>

>

>