Reintroduction and question

[Guest guest]

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

[Guest guest]

, I remember you and all the children. I am the most conservative,

overprotective mother west of the rockies; when my adult wcf was young,

I kept the child home under the same circumstances--competing for title

of world's most conservative and over-protective mother, n Rojas,

wcf, mom of 3 adults: 2 carriers, and the youngest wcf also, wishing you

all love and a good year. . .

Reintroduction and question

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

[Guest guest]

Hi, ,

Although my daugher was a little bit older when she had to go to

school with a picc line, I was also concerned the first time. We

don't have a nurse either; most of the staff had never heard of a

picc line. We wrapped her arm up with coban (she preferred bright

colors then) and put on a shirt to cover it up. The first day that

it was too warm for long sleeves, her classmates were full of

questions. What did she say? " I got bit by a shark " . Which was

even more hilarious because we live in the U.P. of Michigan. Well,

the kids believed that for a LONG time and never asked again. When

Lyn had a bandaged arm, it was always thought she had a shark bite.

It was not until high school that she would unwrap the bandage and

show everyone what a picc line looked like. No one ever gave her a

hard time. As far as hurting it goes, Lyn never held back from

playing. As long as the teacher is aware that the other students

should not grab her arm, there should be no problem. The hardest

part of the whole thing is finding a place at school to do meds (if a

dose is needed during those hours). By the way - Lyn refused for

many years to do so, but now has a port. It is wonderful! If anyone

is not sure about getting one, e-mail me. She wishes she had gotten

it many years ago. Have a great day!

> 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

>

>

>

[Guest guest]

In a message dated 2/9/2004 1:10:15 AM Central Standard Time,

tripletmom@... writes:

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

Hi I am a mother of three daughters and two of them have CF. My oldest

also has hydrocephalus and was diagnosed with that at year old and CF at age

6. She also has a shunt and know how hard it is to get the school to listen

and work with you child in fact I have a meeting with them today. Even though

you are a teacher you are also a tax payer and should get the same rights as any

one else. I would through that at your school. How old was your daughter when

she was diagnosed with hydrocephalus? My daughter does not have the seizures

but has memory problems and comprehension is also a tough thing for her. Keep

fight for you daughter because know one else will. Deb A

[Guest guest]

Dear ,

I am so glad to see you on list again. BUT am sorry your having such a

hard time at this time. Your do careful & diligent about all caring of

your children. I do hope this gets cleared up for soon .

Love to all your family

LOVE & HUGS, grandmoMBEV

Reintroduction and question

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

[Guest guest]

,

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

>

>

>

[Guest guest]

Hi S,

Welcome back! I'm M, mom of Nick age 21 nocf and who is 20 now

wcf. I am really glad to have you and the triplets back. As for your question,

I was going to say no to school with a picc line but when you said she has an

aide who is an LPN I think it would be fine. My concern was the other

kindergarteners curiosity about the line. But since she has an aide it should

be OK. When you get a chance could you explain about 's other conditions

as I am not familiar with some of them. If that isn't being too nosy. If it is

or you don't care to, please excuse the question.

love,

M

[Guest guest]

May I join M, thus revising my original position? n Rojas

Re: Reintroduction and question

Hi S,

Welcome back! I'm M, mom of Nick age 21 nocf and who is 20 now

wcf. I am really glad to have you and the triplets back. As for your question,

I was going to say no to school with a picc line but when you said she has an

aide who is an LPN I think it would be fine. My concern was the other

kindergarteners curiosity about the line. But since she has an aide it should

be OK. When you get a chance could you explain about 's other conditions

as I am not familiar with some of them. If that isn't being too nosy. If it is

or you don't care to, please excuse the question.

love,

M