venting - kindergarten registration, ect..

March 20, 2001

Hi,

Hope you all don't mind, feel like venting a bit. I just spent the day

registering our 5 yr old daughter with CF, started at 9:30 am and just

finished at 5 pm. Talked to everyone there, teachers, principal, school

nurse, special ed. supervisor, ect. about her CF, how to give meds, how

to give PT, how to treat her, how to feed her, ect.. We have to provide

Vitamin D milk, the school only provides 2% milk, we have to provide a

nebulizer machine for her albuterol treatments, we have to provide extra

salt since they don't allow kids to have salt, and we have so much

paperwork to get from her doctor to prove it all needs done. I am

beyond exhausted, beyond tired, beyond talked out... just want to crawl

into bed and snooze. Can't though, I also have a 6 month old son with

CF that is cutting his first 2 teeth at the same time, haven't slept

more than a couple of hours for about a week now. I am so tired, can't

even think straight now. There is just too much going on, feel like

screaming or crying, don't know which. The school was nice, everyone

was kind and understanding and sympathetic and more than willing to work

with us. I am feeling extremely overwhelmed at this point though. Our

daughter passed all the tests, 100%! She tested very high on

everything. The teachers, ect. , were very impressed by her. They also

warned us though that alot of parents around here send their kids to

school with colds, flus, viruses, and to be prepared that it could

really hurt our daughter because of the CF. I am so extremely worried

and scared, what if she gets to school and she gets around a kid that

has a nasty virus and she gets sick? Will school actually hurt her

being around all those kids? I know its a risk I have to take. Heard

the speach from my husband on this subject already. Anyway, better go

make dinner. Thanks for letting me vent a bit.

mom of - 5 w/ CF, - 6 months with CF, Caytlin - 8 w/out CF,

- 11 w/out CF

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