Two questions...treatments and working...

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angel12

New member
I am new to this site... I have a daughter who is 12 with CF. She is doing well. She had a rough start to life but is doing good now. We moved to a new state and the doctors here are good but have added alot of treatments and quite honestly it is hard to balance it all out...I would like to know how others have handled this....


Also I have tried to hold a full time job in the medical field but with the ups and downs in her life it has been hard...Not every employer understands having a child with an illness...please tell me how working full time has been handled by other people with children with CF.

Thank you for your insight
 
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anonymous

New member
Luckily I have an employer who is very family oriented and understands that family comes first. My previous employer was not as great and it seem like it bothered her everytime I had to miss work for CF Clinic. When my daughter was first diagnosed, she was in the hospital for 2 weeks. My husband and I were up there every single day for obvious reasons. She was 4 years old...our baby! I wasn't about to leave her up there. Plus we needed to be schooled on CF and learn everything there was to know. My employer couldn't understand why I couldn't come back to work and let my husband or my parents stay up there with her. What a bit**!

Be up front with your employer and teach them about CF. Make them understand that this is not a situation of "Oh my child is sick and I need to stay home with them." This is a very serious disorder and with the age of your child, you need to be with them. It's not like they're 22 and can make the appointment on their own.

Each child's routine with treatments are different. The best advice I can give you is try your best, plan ahead and cherish each moment with your child.
 
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anonymous

New member
our social worker at our clinic prepared a very thorough letter (almost to scary for an outsider). Perhaps your clinic would be able to give you something. It basically states that as the caretaker of a CFer, if he is sick, I have to be excused. Period. I returned to work after my maternity leave, had my sitter back out on me and then my baby ended up in the hospital (all within a 3 week time span!!!) It was a REALLY horrible month. My boss claimed to understand, but I could always hear a catch in his voice that he was annoyed. In the end we worked out a schedule, but it was a rollarcoaster of problems!! Good luck
 
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angel12

New member
Thank you for all your answers. I spoke to my daughters pediatrician yesterday and told him my frustrations with her added treatments and how the some of the CF doctors at the hospital were offensive. He understood, and actually knew some of them (doctors) and assured me it was not my imagination. I am feeling alittle less stressed now.
 
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