Re: school issues (long posting)

[Guest guest]

, I always cried - alone at home...to me it was such a milestone. Now I

cry when they stay home! I hear so many parents of " healthy " kids

complaining about driving kids here and there - it makes me wild. They

should be happy that there kids are healthy enough to do these activities.

Yes, I might say " Oh, Gosh, I am like a Taxi driving them here and there " ,

but I am happy that they are able to do these activities.

From what I have seen thus far, boys cry MORE than girls on the first day or

two...seperation is harder - maybe harder for us since we have so much to

worry about. Try meeting with the teacher BEFORE the first day and tell

her/him about your child. I do this every year. I hand them information on

CF and tell them about my childs particular needs.

Sometimes I cry cause I am HAPPY to see them go. I feel like I ran a

marathon to get them there with all the treatments and pills in the morning.

When they walk through the doors I feel like doing cartwheels.

Good Luck...bring tissues.

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

,

My oldest I didn't even know that she had CF when she went to school so it

didn't bother me when she went because I had two at home at the time and it

was kind of a relief. But when my youngest went that has CF it kind of

worried me but on the other had I knew I was finally going to have time to

myself and know one around to say MOM!! You learn to appreciate the time you

have to yourself. Deb A

[Guest guest]

Dear Rosemary ,

You are such a good mother. I know you mean what you say, & that sure is

great.

Getting them to school on time is a challenge to all BUT , with 3 having

CF & treatments. WOW-that IS a super accomplishment. I know many here

will feel the same . Also feel the same that it isn't easy as they

strive to do that also in their homes.

I hope your able to get out of all this weather , but if not -Have a fun

day at home

LOVE & HUGS, grandmomBEv

Re: school issues (long posting)

, I always cried - alone at home...to me it was such a milestone.

Now I

cry when they stay home! I hear so many parents of " healthy " kids

complaining about driving kids here and there - it makes me wild. They

should be happy that there kids are healthy enough to do these

activities.

Yes, I might say " Oh, Gosh, I am like a Taxi driving them here and

there " ,

but I am happy that they are able to do these activities.

From what I have seen thus far, boys cry MORE than girls on the first

day or

two...seperation is harder - maybe harder for us since we have so much

to

worry about. Try meeting with the teacher BEFORE the first day and tell

her/him about your child. I do this every year. I hand them

information on

CF and tell them about my childs particular needs.

Sometimes I cry cause I am HAPPY to see them go. I feel like I ran a

marathon to get them there with all the treatments and pills in the

morning.

When they walk through the doors I feel like doing cartwheels.

Good Luck...bring tissues.

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you

ready

for this - TOBI after their medication!!! At least it wasn't albuterol

or

Coly...

[Guest guest]

Dear ,

I have a with cf also ;o), and I chose to homeschool him and we are

both really enjoying it!! I also have a 12 year old, , (no cf and is not

a carrier) who attends a Catholic school, and yes I cried her first day, she did

just fine though. Do you mind if I ask what mutations your has, mine

has G85E, and G542X, and so far we have been really lucky with him. His biggest

problem is his bowels, he is on 15cc of the concentrated MOM, 15cc Colace, and

Miralax and Senekot as needed. He has only had pneumonia once when he was 5

months old, but he wasn't dx with cf until he was 8 months old.

Take care,

Deana

school issues (long posting)

Hi all, just checking in to update you all with some news about ,

first of all, we just found out that my grandmothers sister's child who is 45

yrs old has cystic fibrosis. Apparently he has been healthy most of his life

up until now, he has the same gene mutations as , so that's good news,

's doctor did tell us that would live to be past his 30's so

this gives us hope. Well, anyway, I really need some assurance, was

accepted to a program through the state of Florida, called early intervention

program due to this illness and adhd. He will be starting school in March. I

have already put his 504 plan together and we are just getting ready to

finish his I E P plan. I took the liberty to put together workbooks for

's teacher, school nurse and the principal, which basically explains

just about everything about what his needs are. ( by the way thankyou Bev for

the info) I have even gone as far as highlighting the important parts. Here

is the biggie, I am worried that will have a hard time adjusting,

awhile back (about 2 yrs) went to preschool and he cried every day,

he would just latch on to me and it was hard for me, usually I left crying,

well it didn't help that I was pregnant at that time with his brother, I was

really hormonal lol. At that time we didn't know had this disease so

maybe that had to do a lot with it. I've got butterflies, I have so many

questions that I want and need answered. I like to know what's going on and I

like to be prepared and organized. will be seeing a behaviorist in

March due to symptoms of adhd, I am hoping that he will be able to give me

some insight on what to expect and so forth, I have a lot on my mind, I

talked to my husband but he really doesn't know what to say, My family says

that I'm rushing into school, he is almost five years old. His

doctors believe that he needs structure and a routine and going to school

will be able to accomplish that, I agree. How did you all as parents deal

with your child going to school for the very first time? and with cystic

fibrosis on top of that. Did your kids cry? Did you cry? Please could you all

give me some insight, I really would appreciate it.

Thanks, , mommy of 4yrs 10 months old w/cf and adhd and 19

months old no/cf