Re: lousy day...

[Guest guest]

Oh, gosh ... Hershey bars were made for days like that.

(Seriously, those big block bars with almonds, then I discovered

Cadbury and Toberlone!)

Since Levi has never had Cipro before, just two thoughts, okay? Cipro

always makes really sun sensitive -- gets a burn in just a few

minutes. It might help to know that so Levi doesn't get a rashy burn

at recess time.

Whenever had to take Floxin, Levaquin, or Cipro (all meds that

make him fry in less than five minutes), he'd stay indoors at recess.

His school was great about letting a buddy stay in with him so he

didn't feel left out.

And I really hope you won't mind me mentioning magnesium, but I'm not

sure whether you're using it with Levi. Just a reminder that Cipro

and TOBI will lower his magnesium levels, which will make his lungs

more acidic (and lead to other health problems) and likely increase

any excitable and attention behavior tendencies.

Since Cipro can also cause bad leg pains in young children it's

especially important to watch their magnesium intake. Just be sure

NOT to take magnesium BEFORE Cipro. You have to wait at least 2 hours

after Cipro before giving magnesium or any multi containing magnesium.

Good luck on the job hunt. I hope you find the perfect job for you!

Kim

[Guest guest]

Hi ,

About Levi's first day. Let's look at the positives. He enjoyed school, no one

gave him peanuts and he came home happy.

About the bus, Maybe send him in to school with something to keep him occupied

on the bus ride (or give it to the older kids to give to him once they are on

the bus?)

About culturing pseudo a , has cultured it off and on since she was dx at

9 & 1/2 months and she is doing great. (she gets annuals on Sept 2) She has

been on a tobi/bactrum combo since she was about 18 months. (cipro gives her

horrible diarrhea ) Just request that they take his levels when you start. If

the CF docs don't want to ask the ped to do it for you. 's levels were

very high and her dose was cut in half. She is still on a half dose and I'm

glad to report there has been no reason to change it yet. (this is also handy as

it doesn't take as long to do)

You will work it all out, it really is just a bump in the road.

lousy day...

Hello all, welcome to the new people on list.

Today was Levi's first day of Kindergarten. He was happy to go, and

thrilled that he gets to ride a school bus this year. We just had a

good visit at clinic recently, so he was all set for the new year.

He waved and smiled as he rode away on the bus...

Early afternoon I got a call from the cf clinic. It seems that his

sputum culture results are in and he cultured pseudo a. for the first

time ever. He'll be starting cipro and tobi (first time for both of

these antibiotics for him) and the tobi will take about 30 mins to

aerosolize twice daily. Since he gets on the bus at 7:07 a.m., and

does 30 minutes of the Vest before that, we now will begin morning

treatments no later than 6:00 a.m., and that's if he isn't eating

breakfast afterwards.

So, I try to take all this in stride, after all, he was bound to

culture it eventually, the doctor is going to treat it agressively,

and at least he won't have to have his first hospital stay yet.

When he gets home from his first day (at 4:00 p.m. - mine are the

third group of kids on the bus in the morning, third from the last

off in the afternoon), I ask how his day went. Well, school was

dandy, but (my other two children reported) that there were

some " problems " on the bus that the bus driver will be calling me

about. Evidently, one hour of confinement each way to and from

school is a little much for a VERY active five year old to sit for

without interacting (aggressively) with other children.

To top it off, Levi develops a 100 degree F fever and terrible

headache this evening that Children's Motrin didn't seem to put a

dent in. He SCREAMED and cried for about two hours before going to

sleep by 8:00. His fever is gone now and he's sleeping, so maybe

tomorrow will be a good day. :\

And here I sit on the computer at midnight wondering if sending him

to school was just plain stupid. I have homeschooled my children in

the past, but was hoping to go back to work this year with all three

in school. I've been sending resumes out this week. Levi is

soooooooo energetic that I thought it might be a challenge for the

Kindergarten teacher, but I didn't think he'd be facing expulsion

from the bus by the second day of school. That, combined with the cf

issues and his severe peanut allergy make juggling his needs a little

sticky, but I thought it could work out. Maybe it was just wishful

thinking since I want to get back into the workforce again.

Maybe I am just consumed with self-doubt because it's late and it's

been a rough day. Hopefully, tomorrow I will see that this is just a

little bump in the road on our journey. Today I just kept having the

same thought pop into my head - " I just don't want to do this

anymore. " Denial in it's grandest form. (Like I have a choice,

right??? It's not as if I can just say, " alright then, tomorrow we

will all wake up healthy and happy with no worries... " )

I always knew that when the day came that he cultured pseudo, I would

tough it out and just take it as part of the cards we're dealt. Now

I'm mad at myself for being such a whiner over it.

It could be so much worse and I'm thankful it isn't.

I hope everyone out there on the list is doing well. Thanks for

listening.

~

mommy to 3, 1 with cf

[Guest guest]

Thanks, . You're right, just a bump in the road.

The school doesn't allow any toys or games to be sent in, so maybe a

book would do the trick for the bus ride (that is, if the threats

I've given him don't work first!)

Thanks for the advice about checking his levels, I hadn't even

considered that with everything else going on.

~

> Hi ,

> You will work it all out, it really is just a bump in the road.

>

[Guest guest]

,

If the threats don't work, I would call the school, maybe something could be

worked out for your special situation. I mean who asks a 5 year old to sit

quietly on a bus for and hour twice a day and expects them to be able to behave

the whole time? He is still pretty little and if he is anything like my almost

five year old it would be nearly impossible. I hope all goes well.

Re: lousy day...

Thanks, . You're right, just a bump in the road.

The school doesn't allow any toys or games to be sent in, so maybe a

book would do the trick for the bus ride (that is, if the threats

I've given him don't work first!)

Thanks for the advice about checking his levels, I hadn't even

considered that with everything else going on.

~

> Hi ,

> You will work it all out, it really is just a bump in the road.

>

[Guest guest]

Hi ,

Hope this finds you with a new day and new hope. Someday you will wake up

and your children will be grown and off doing their own thing and you will

think. " It is so quiet " . There are days that it would be nice. But reality

shocks us back into the present. I work full time and enjoy being with

other adults and gives me some time away from home. I only have one at home

now and it is very quiet. Hang in there. You can do it.

Tina, mother of Steph, age 18 ycf

lousy day...

Hello all, welcome to the new people on list.

Today was Levi's first day of Kindergarten. He was happy to go, and

thrilled that he gets to ride a school bus this year. We just had a

good visit at clinic recently, so he was all set for the new year.

He waved and smiled as he rode away on the bus...

Early afternoon I got a call from the cf clinic. It seems that his

sputum culture results are in and he cultured pseudo a. for the first

time ever. He'll be starting cipro and tobi (first time for both of

these antibiotics for him) and the tobi will take about 30 mins to

aerosolize twice daily. Since he gets on the bus at 7:07 a.m., and

does 30 minutes of the Vest before that, we now will begin morning

treatments no later than 6:00 a.m., and that's if he isn't eating

breakfast afterwards.

So, I try to take all this in stride, after all, he was bound to

culture it eventually, the doctor is going to treat it agressively,

and at least he won't have to have his first hospital stay yet.

When he gets home from his first day (at 4:00 p.m. - mine are the

third group of kids on the bus in the morning, third from the last

off in the afternoon), I ask how his day went. Well, school was

dandy, but (my other two children reported) that there were

some " problems " on the bus that the bus driver will be calling me

about. Evidently, one hour of confinement each way to and from

school is a little much for a VERY active five year old to sit for

without interacting (aggressively) with other children.

To top it off, Levi develops a 100 degree F fever and terrible

headache this evening that Children's Motrin didn't seem to put a

dent in. He SCREAMED and cried for about two hours before going to

sleep by 8:00. His fever is gone now and he's sleeping, so maybe

tomorrow will be a good day. :\

And here I sit on the computer at midnight wondering if sending him

to school was just plain stupid. I have homeschooled my children in

the past, but was hoping to go back to work this year with all three

in school. I've been sending resumes out this week. Levi is

soooooooo energetic that I thought it might be a challenge for the

Kindergarten teacher, but I didn't think he'd be facing expulsion

from the bus by the second day of school. That, combined with the cf

issues and his severe peanut allergy make juggling his needs a little

sticky, but I thought it could work out. Maybe it was just wishful

thinking since I want to get back into the workforce again.

Maybe I am just consumed with self-doubt because it's late and it's

been a rough day. Hopefully, tomorrow I will see that this is just a

little bump in the road on our journey. Today I just kept having the

same thought pop into my head - " I just don't want to do this

anymore. " Denial in it's grandest form. (Like I have a choice,

right??? It's not as if I can just say, " alright then, tomorrow we

will all wake up healthy and happy with no worries... " )

I always knew that when the day came that he cultured pseudo, I would

tough it out and just take it as part of the cards we're dealt. Now

I'm mad at myself for being such a whiner over it.

It could be so much worse and I'm thankful it isn't.

I hope everyone out there on the list is doing well. Thanks for

listening.

~

mommy to 3, 1 with cf

[Guest guest]

, remember, kids will test their limits in any new situation and that

includes riding the bus. It is never easy to deal with the fact that your kids

have misbehaved when they were in public with out you. I can sympathize with

you on this. , 6 no cf, is the one at our house that seems to cause the

most trouble out in public. I am always torn between wanting to string him up

for misbehaving, or string up the teacher who allowed him to get so out of

control. I know the bus driver can't reasonably control all of the children and

drive the bus at the same time. You could get permission from the school

superintendant to ride the bus with Levi for a few days and help him learn how

to behave on the bus.

Just asking, but what kind of infection policy does Levi's school have? Most

state that your kids need to be fever free for twenty four hours before

returning to school. Even if what he is running a fever from isn't contagious

we should follow the same rules we would want others to abide by. After all,

the fever could just weaken his immune system and make him susceptible to

catching something else.

You are not cracked for wanting to send them all to school. I home school our

oldest three, who are 7, 6, and 5. They had me fed up enough this summer, that

I told I was almost willing to accept the loss of a good education and send

them all to school this year anyway. (Note to all of you educators out

there...I know there are good public schools out there. I attended some of the

finest. The district we are in now is horrible at dealing with kids with

special needs.) But here I sit, four kids at home and their online school

starts the 3rd of September.

Down in the trenches of motherhood days seem to linger on forever. Sometimes

the blessings are too few to balance out the horrible stuff our kids put us

through. But it really won't last. Sometimes you have to step out of the

trench and take a good look around. I always do that around Sammye's, 5 no cf,

birthday. We have now had , 7, ,6, and Sammye for 5 whole years.

The first two years were almost sheer hell. The third year Patti was born and

diagnosed. Hell again. Here we are two more years later and maybe, just maybe

I've made it to a lesser degree of hell. It will get better as we go along.

All too soon they will be gone and I can once again pursue an adult life.

I am not saying that you need to go back to homeschooling your kids. Only you

can determine what is best for your family in that area. I am saying stop and

take a look around. Find the humor in the situation and go on. One day you

will be in the position to help another mom who is going through a rough time.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Well, that was a lousy day! I hope the next was better. I'll have

to continue reading posts and see. I hope that Levi thinks that

school is fun.

Gale

> Hello all, welcome to the new people on list.

> Today was Levi's first day of Kindergarten. He was happy to go,

and

> thrilled that he gets to ride a school bus this year. We just had

a

> good visit at clinic recently, so he was all set for the new year.

> He waved and smiled as he rode away on the bus...

> Early afternoon I got a call from the cf clinic. It seems that his

> sputum culture results are in and he cultured pseudo a. for the

first

> time ever. He'll be starting cipro and tobi (first time for both

of

> these antibiotics for him) and the tobi will take about 30 mins to

> aerosolize twice daily. Since he gets on the bus at 7:07 a.m., and

> does 30 minutes of the Vest before that, we now will begin morning

> treatments no later than 6:00 a.m., and that's if he isn't eating

> breakfast afterwards.

> So, I try to take all this in stride, after all, he was bound to

> culture it eventually, the doctor is going to treat it agressively,

> and at least he won't have to have his first hospital stay yet.

> When he gets home from his first day (at 4:00 p.m. - mine are the

> third group of kids on the bus in the morning, third from the last

> off in the afternoon), I ask how his day went. Well, school was

> dandy, but (my other two children reported) that there were

> some " problems " on the bus that the bus driver will be calling me

> about. Evidently, one hour of confinement each way to and from

> school is a little much for a VERY active five year old to sit for

> without interacting (aggressively) with other children.

> To top it off, Levi develops a 100 degree F fever and terrible

> headache this evening that Children's Motrin didn't seem to put a

> dent in. He SCREAMED and cried for about two hours before going to

> sleep by 8:00. His fever is gone now and he's sleeping, so maybe

> tomorrow will be a good day. :\

> And here I sit on the computer at midnight wondering if sending him

> to school was just plain stupid. I have homeschooled my children

in

> the past, but was hoping to go back to work this year with all

three

> in school. I've been sending resumes out this week. Levi is

> soooooooo energetic that I thought it might be a challenge for the

> Kindergarten teacher, but I didn't think he'd be facing expulsion

> from the bus by the second day of school. That, combined with the

cf

> issues and his severe peanut allergy make juggling his needs a

little

> sticky, but I thought it could work out. Maybe it was just wishful

> thinking since I want to get back into the workforce again.

> Maybe I am just consumed with self-doubt because it's late and it's

> been a rough day. Hopefully, tomorrow I will see that this is just

a

> little bump in the road on our journey. Today I just kept having

the

> same thought pop into my head - " I just don't want to do this

> anymore. " Denial in it's grandest form. (Like I have a choice,

> right??? It's not as if I can just say, " alright then, tomorrow we

> will all wake up healthy and happy with no worries... " )

> I always knew that when the day came that he cultured pseudo, I

would

> tough it out and just take it as part of the cards we're dealt.

Now

> I'm mad at myself for being such a whiner over it.

> It could be so much worse and I'm thankful it isn't.

> I hope everyone out there on the list is doing well. Thanks for

> listening.

>

> ~

> mommy to 3, 1 with cf

[Guest guest]

,

What a great response!

Gale

> Hi ,

> About Levi's first day. Let's look at the positives. He enjoyed

school, no one gave him peanuts and he came home happy.

> About the bus, Maybe send him in to school with something to keep

him occupied on the bus ride (or give it to the older kids to give

to him once they are on the bus?)

> About culturing pseudo a , has cultured it off and on since

she was dx at 9 & 1/2 months and she is doing great. (she gets

annuals on Sept 2) She has been on a tobi/bactrum combo since she

was about 18 months. (cipro gives her horrible diarrhea ) Just

request that they take his levels when you start. If the CF docs

don't want to ask the ped to do it for you. 's levels were

very high and her dose was cut in half. She is still on a half dose

and I'm glad to report there has been no reason to change it yet.

(this is also handy as it doesn't take as long to do)

> You will work it all out, it really is just a bump in the road.

>

> lousy day...

>

>

> Hello all, welcome to the new people on list.

> Today was Levi's first day of Kindergarten. He was happy to go,

and

> thrilled that he gets to ride a school bus this year. We just

had a

> good visit at clinic recently, so he was all set for the new

year.

> He waved and smiled as he rode away on the bus...

> Early afternoon I got a call from the cf clinic. It seems that

his

> sputum culture results are in and he cultured pseudo a. for the

first

> time ever. He'll be starting cipro and tobi (first time for both

of

> these antibiotics for him) and the tobi will take about 30 mins

to

> aerosolize twice daily. Since he gets on the bus at 7:07 a.m.,

and

> does 30 minutes of the Vest before that, we now will begin

morning

> treatments no later than 6:00 a.m., and that's if he isn't eating

> breakfast afterwards.

> So, I try to take all this in stride, after all, he was bound to

> culture it eventually, the doctor is going to treat it

agressively,

> and at least he won't have to have his first hospital stay yet.

> When he gets home from his first day (at 4:00 p.m. - mine are the

> third group of kids on the bus in the morning, third from the

last

> off in the afternoon), I ask how his day went. Well, school was

> dandy, but (my other two children reported) that there were

> some " problems " on the bus that the bus driver will be calling me

> about. Evidently, one hour of confinement each way to and from

> school is a little much for a VERY active five year old to sit

for

> without interacting (aggressively) with other children.

> To top it off, Levi develops a 100 degree F fever and terrible

> headache this evening that Children's Motrin didn't seem to put a

> dent in. He SCREAMED and cried for about two hours before going

to

> sleep by 8:00. His fever is gone now and he's sleeping, so maybe

> tomorrow will be a good day. :\

> And here I sit on the computer at midnight wondering if sending

him

> to school was just plain stupid. I have homeschooled my children

in

> the past, but was hoping to go back to work this year with all

three

> in school. I've been sending resumes out this week. Levi is

> soooooooo energetic that I thought it might be a challenge for

the

> Kindergarten teacher, but I didn't think he'd be facing expulsion

> from the bus by the second day of school. That, combined with

the cf

> issues and his severe peanut allergy make juggling his needs a

little

> sticky, but I thought it could work out. Maybe it was just

wishful

> thinking since I want to get back into the workforce again.

> Maybe I am just consumed with self-doubt because it's late and

it's

> been a rough day. Hopefully, tomorrow I will see that this is

just a

> little bump in the road on our journey. Today I just kept having

the

> same thought pop into my head - " I just don't want to do this

> anymore. " Denial in it's grandest form. (Like I have a choice,

> right??? It's not as if I can just say, " alright then, tomorrow

we

> will all wake up healthy and happy with no worries... " )

> I always knew that when the day came that he cultured pseudo, I

would

> tough it out and just take it as part of the cards we're dealt.

Now

> I'm mad at myself for being such a whiner over it.

> It could be so much worse and I'm thankful it isn't.

> I hope everyone out there on the list is doing well. Thanks for

> listening.

>

> ~

> mommy to 3, 1 with cf

>

>

>

>

>

>

[Guest guest]

Dear ,

I am sorry to hear about Levi's pseudo. Like you needed one more thing to do in

the morning! That is awfully early for anyone. I just thought I'd write and

comiserate since MY baby has to go in the hospital tomorrow and she doesn't want

to and I don't want to either. But we will keep our chins up and go in and take

care of it. She did a culture Tues at clinic so I guess we will see what grew.

hasn't cultured pseudo in years and I have the feeling its back.

hugs, and hang in there,

[Guest guest]

Dear Bren, I hope you got my first post to this , But take care, Love to

both & be sure & get us the hospital addy .

LOVE & HUGs,GRDMBEV

Re: lousy day...

Dear ,

I am sorry to hear about Levi's pseudo. Like you needed one more thing to

do in the morning! That is awfully early for anyone. I just thought I'd

write and comiserate since MY baby has to go in the hospital tomorrow and

she doesn't want to and I don't want to either. But we will keep our chins

up and go in and take care of it. She did a culture Tues at clinic so I

guess we will see what grew. hasn't cultured pseudo in years and I

have the feeling its back.

hugs, and hang in there,

[Guest guest]

,

You seemed so down in your post about the 1st day of school. I

sure hope that things have turned around for the better in every way

that they can anyways.

I am sorry that Levi ( that is my only brothers name he is 9) has

cultured pseudo. a. I am so scared for that day to come. Colgan my

youngest is 7 months and has not had it et but the reality of it is that

it will come as it does with all of these kids and it frightens me to no

end.

I am sorry that you could not just be sad that your little one

had just gone off to school for the 1st time. Instead you and others as

well as me in the future have to worry if they will be safe and the

constant wonder of what they will come home with next. It isn't fair,

but what is right?

I know what you mean about wanting to work. I was a traveling

manager for a very prosperous company before my son was born. I really

miss the sense of pride that my job gave me. Not that raising my 2 boys

does not, it is only different. I am sure that you understand.

Anyways, I am sorry to hear all of the news but I hope that it

gets easier. Let me know how your little Levi is doing.

Lots of Love,

Ashauna mom of 2 boys Maxwel almost 5 still testing and Colgan 7 months

wcf.