Levi's appt., etc.

[Guest guest]

Hello all! I hope you're all doing well, and your

little ones too!

We took Levi to his clinic visit yesterday to find

that someone (perhaps in training?) or something

(naughty Micro$oft program on computer?) had cancelled

our eight a.m. appointment by mistake. So we got

to wait until 9:15(!) to see Dr. O. No way were we

jumping back into the car and driving home to Ohio

before having Levi checked out! Once that got

straightenned out, the visit went well. He's gained

weight, and height, and his lungs are clear. I did

skip questions on my list (including the one about my

wrists hurting - didn't want to wait around for a

consult with the r.t. on proper physiotherapy

technique ~ we were pressed for time because it was my

oldest child's birthday and I had to get home to bake

a cake, wrap gifts, clean the deck, on and on and

on...) and the one about the rsv vaccine (which I'm

not too concerned about this month anyway - better to

cover that one in two months when winter is closer).

The ringworm is just about all cleared up (thanx to a

knowledgable pharmacist... at Rite Aide of all

places!!) so that wasn't an issue. Levi, of course,

was ALL OVER the exam room, so if he gets sick in ten

days, we know where he got it.

Dr. O says Levi looks great. When we leave each

clinic visit, we get a copy of instructions, the

bottom has the next appt. info on it. Usually the

instruction sheet is full with changes to meds, things

like, " increase aerosols to 4X a day until... " , etc.

The last time we went, the only thing wrote on the

sheet was " no change " , this time it said " doing well " .

So I am just very, very pleased at this point. Dr. O

listens better than a best friend and is just a

fantastic person, too. We discussed the changes that

I have made in Levi's regimine, and it is refreshing

to speak to a professional with an open mind and

common sense in addition to all the training he has

behind him. Plus, he wears neat bow ties.

Next time we go to clinic, Levi will get his annual

chest x-rays. The last time he had them, he was a

little baby. They strapped him down, arms over his

head, and he SCREAMED. It was heart-wrenching for me,

but I knew he wouldn't remember it. He's going to be

19 months old when he gets the next ones, and I'm

afraid he may hold a bit of a grudge this time around.

As of this moment, all is well here.

On another note, someone had mentioned that they

wouldn't post alternative treatment info to this

list... WHY NOT??? Hoarding info will not be

tolerated! Don't make me email you every five minutes

until you give in. We have ways of filling your

mailbox...

As long as you aren't PUSHING products or telling

other people to change their children's medicine

without consulting a physician, PLEASE let us know

what works for your child. If you have a testimonial

to something, please do share. If you want to find

what's helping one person's children stay healthy,

check out the shared files area for cfparents at

onelist. (AND don't be afraid to add a file of your

own if you think it is relevant!)

AND if you've tried alternative therapies that DIDN'T

work, let us know that, too!

I can't imagine what would make anyone think that a

bunch of information-hungry parents wouldn't want to

hear about ANY treatment that might help. That's not

to say we would try it on our children, but I'd like

to at least know what's available.

I better get off this silly computer and get some

sleep before I keel forward onto the keyboard snoring!

I just want to slip in one more little comment...

I thank all of you who have come to the cfparents

list. You are all a great support and inspiration to

me. We live in a very rural area and don't know of

any other children here who have cf. If it weren't

for all of you, I would feel alone in my fears. Thank

you for being there and for signing on to this list.

Even those who lurk without posting are a comfort to

me. Just knowing that you are there means more than I

can articulate.

Thanks,