My child is only three and already I'm worrying about the enzyme isse at elementary school. I believe the school policy is medications have to be kept in the school office -- school nurse isn't at the school every day. And I can already imagine him not wanting to miss anything in class, have to wait in line because he's late for lunch, get some crabby lady in the office that he has to deal with all the time. I'm DREADING it. At ds's daycare, they just know that they have to give him his enzymes -- the director is very strict about it.
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Parents of CF Kids Working
- Thread starter anonymous
- Start date
My son with CF has been in daycare (in someone's home) since he was 10 weeks old. Wasn't diagnosed until he was 10 months. However, I have always felt confident about his care and he has thrived and learned to talk early, count, letters, etc. He loves to go. I am sending him into a Preschool/daycare setting starting in September and cannot wait for him to go. It is not something I am scared of doing. I want him to be around other kids, be a normal little boy, exposed to other people (don't like necessarily the germs) and experiences. Experiences are something you can never go back and re-create.
He has had a PIC Line 4 times, did home IV's for all of them after the initial hospitalization. Was this a result of him being in a daycare setting (with only 5 kids? Not sure?) He has gone to his daycare home with the PIC Line/IV's and I would come over during my lunch hour to administer. I have always stressed the importance of treating him like any other child and would not want others to treat him differently either. He's just a little more special than most. His daycare provider gives his enzymes, prevacid, but I do all the rest at home. I've provided his preschool teachers for the fall with all the information I could gather on CF ( probably went a little overboard with it!!!) and will sit down again with them just prior to his starting.
I look forward to him going and would have more worries if he stayed home having to stay with an insane mother!!! I'm kidding, I just love my job and need it to remain sane!
Mom to 3 1/2 yr old w/cf
He has had a PIC Line 4 times, did home IV's for all of them after the initial hospitalization. Was this a result of him being in a daycare setting (with only 5 kids? Not sure?) He has gone to his daycare home with the PIC Line/IV's and I would come over during my lunch hour to administer. I have always stressed the importance of treating him like any other child and would not want others to treat him differently either. He's just a little more special than most. His daycare provider gives his enzymes, prevacid, but I do all the rest at home. I've provided his preschool teachers for the fall with all the information I could gather on CF ( probably went a little overboard with it!!!) and will sit down again with them just prior to his starting.
I look forward to him going and would have more worries if he stayed home having to stay with an insane mother!!! I'm kidding, I just love my job and need it to remain sane!
Mom to 3 1/2 yr old w/cf
Tara (who is now 12 -- OMG) did not go to preschool until she was 4 (Drs orders) and Tina (now 10) was 3. I always left them with snacks that didnt require enzymes.
It is very scary in the beginning to leave them with someone else but usually the people are more than happy to help out.
I absolutely agree that the kids should be treated as normal and yes, they will get germs in school. However, when they are really little their lungs are little and have a harder time fighting the germs.
With me working nights, I am able to run up to their schools whenever I am needed for field trips, parties, etc. My fear of going to days is what do you all do when the child is sick or in the hospital. How can you keep taking off from work?? How do you take them to their Dr. appts? Our CF Clinic only does am hours.
Being a parent is stressful enough and then add in CF (and a new puppy) and I am living on the edge !!! LOL -- Deb<img src="i/expressions/heart.gif" border="0">
It is very scary in the beginning to leave them with someone else but usually the people are more than happy to help out.
I absolutely agree that the kids should be treated as normal and yes, they will get germs in school. However, when they are really little their lungs are little and have a harder time fighting the germs.
With me working nights, I am able to run up to their schools whenever I am needed for field trips, parties, etc. My fear of going to days is what do you all do when the child is sick or in the hospital. How can you keep taking off from work?? How do you take them to their Dr. appts? Our CF Clinic only does am hours.
Being a parent is stressful enough and then add in CF (and a new puppy) and I am living on the edge !!! LOL -- Deb<img src="i/expressions/heart.gif" border="0">
Both my husband and I have good vacation and sick leave benefits and we've banked a lot of time over the years. We're able to carry over 30 days a year in vacation time, 80 hours of comp time and 120 days of sick leave each year, which we've banked up over the years. Currently we both get about 1 1/2 days per month for both sick leave & vacation time.
Another nice thing about where I work is that when ever there has been a crisis with an employee where they need to take more time off than they've saved, we're able to donate time to them so they can continue to take time off to get better or to give them enough time to get their ducks in a row in terms or getting on disability.
When DS has gotten sick, one of us takes him to the doctor and then since DH's parents live in town, we usually take him over there or they come to our house.
When DS had to have synagis shots every month, DH and I just took turns taking him to the clinic. When we have CF clinic in the City, we plan usually try to plan for a Friday -- we leave in the morning, hit the clinic and then check into a hotel for the weekend to do some shopping and dining out.
Another nice thing about where I work is that when ever there has been a crisis with an employee where they need to take more time off than they've saved, we're able to donate time to them so they can continue to take time off to get better or to give them enough time to get their ducks in a row in terms or getting on disability.
When DS has gotten sick, one of us takes him to the doctor and then since DH's parents live in town, we usually take him over there or they come to our house.
When DS had to have synagis shots every month, DH and I just took turns taking him to the clinic. When we have CF clinic in the City, we plan usually try to plan for a Friday -- we leave in the morning, hit the clinic and then check into a hotel for the weekend to do some shopping and dining out.
I completely understand about the issue with being little and lungs going through alot of the development issues, then on top of that dealing with CF. I didn't know he had CF for 10 months, he went through lots, lots of testing for all types of things before I asked for the CF test. So I really didn't know what I was dealing with. In my situation, (I am the mom to the 3 1/2 yr old w/cf), I haven't really had a choice about having to work. I have to work due to needing the 2nd income as well as I am the holder of the insurance. So, in a way the decision was made for us regarding having to put him into a daycare setting.
My employer has been absolutely wonderful regarding my time that I have needed to take off for hospital stays, (which were quite a bit right after his diagnosis at 10 months), clinic visits, going to daycare to administer the IV meds, etc. I also have FMLA for all of this as well though, so they really aren't given an option about being understanding in some respects.
In looking back, I'm glad to have not had to make the choice, but do think that it has been good for both him and I to have me work. It allows me the break (sad as it's usually my only time away from him) from "CF" for a part of everyday and him a break from his crazy mom! I know that he enjoys the day with the other kids. Germs they are everywhere, while I don't promote contact with them, I do not try to limit his activities too much.
Mom to 3 1/2 yr old son w/cf
My employer has been absolutely wonderful regarding my time that I have needed to take off for hospital stays, (which were quite a bit right after his diagnosis at 10 months), clinic visits, going to daycare to administer the IV meds, etc. I also have FMLA for all of this as well though, so they really aren't given an option about being understanding in some respects.
In looking back, I'm glad to have not had to make the choice, but do think that it has been good for both him and I to have me work. It allows me the break (sad as it's usually my only time away from him) from "CF" for a part of everyday and him a break from his crazy mom! I know that he enjoys the day with the other kids. Germs they are everywhere, while I don't promote contact with them, I do not try to limit his activities too much.
Mom to 3 1/2 yr old son w/cf
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Tara (who is now 12 -- OMG) did not go to preschool until she was 4 (Drs orders) and Tina (now 10) was 3. I always left them with snacks that didnt require enzymes.
It is very scary in the beginning to leave them with someone else but usually the people are more than happy to help out.
I absolutely agree that the kids should be treated as normal and yes, they will get germs in school. However, when they are really little their lungs are little and have a harder time fighting the germs.
With me working nights, I am able to run up to their schools whenever I am needed for field trips, parties, etc. My fear of going to days is what do you all do when the child is sick or in the hospital. How can you keep taking off from work?? How do you take them to their Dr. appts? Our CF Clinic only does am hours.
Being a parent is stressful enough and then add in CF (and a new puppy) and I am living on the edge !!! LOL -- Deb<img src="i/expressions/heart.gif" border="0"></end quote></div>
Hi Deb,
I work 10.00 am-2.00 pm Tuesday to Thursday. Working these hours enables me to be at home first thing in the morning to do my daughter's treatments and evening time to do her treatments again. I also have Mondays off. When she has a Clinic/Doctors appointment I just book time off work. I need my job to keep sane! Feel I've got a good balance going at the moment and who knows things will probably change. I just try to take each day as it comes and enjoy them.
Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">
Tara (who is now 12 -- OMG) did not go to preschool until she was 4 (Drs orders) and Tina (now 10) was 3. I always left them with snacks that didnt require enzymes.
It is very scary in the beginning to leave them with someone else but usually the people are more than happy to help out.
I absolutely agree that the kids should be treated as normal and yes, they will get germs in school. However, when they are really little their lungs are little and have a harder time fighting the germs.
With me working nights, I am able to run up to their schools whenever I am needed for field trips, parties, etc. My fear of going to days is what do you all do when the child is sick or in the hospital. How can you keep taking off from work?? How do you take them to their Dr. appts? Our CF Clinic only does am hours.
Being a parent is stressful enough and then add in CF (and a new puppy) and I am living on the edge !!! LOL -- Deb<img src="i/expressions/heart.gif" border="0"></end quote></div>
Hi Deb,
I work 10.00 am-2.00 pm Tuesday to Thursday. Working these hours enables me to be at home first thing in the morning to do my daughter's treatments and evening time to do her treatments again. I also have Mondays off. When she has a Clinic/Doctors appointment I just book time off work. I need my job to keep sane! Feel I've got a good balance going at the moment and who knows things will probably change. I just try to take each day as it comes and enjoy them.
Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">