CF children and child care

[proudmom2lilCFer]

I was wondering... Those of you that have little CFers. Are you able to work? If so who takes care of your child? I haven't been back to work since my son was born. He is now a little over 9 months old. I am a single mom and I do not have any family that can take care of him. They all work, and my grandparents are ok to babysit, but there is no way that they could do his meds and all that stuff. I have heard about some places that you can get someone that is medically qualified to come to your home and watch your child. Does anyone know about this? I was wondering if it was a nurse or just someone that they hired off the street. I am very particular about who watches my children and always have been. Not even considering CF. I was just wondering how other parents solved this matter. Are there any other single parents to CFers?

 

[anonymous]

We have the same problem. I refuse to put my 9mo old with cf in daycare, but the mortgage has to be paid! My employer allowed me to work from home for the past 6 mos (after 3 mo maternity leave). But when the fall hits, I have to go back to the office 2 days/week. Everyone we know (with healthy kids) seems to have a relative or someone who watches their kids, doesn't charge them, etc. (watch me turn green). I started passing the word to everyone I know, just trying to find someone. I didn't want to plae an ad in the paper, I was hoping to find a refered person. After about 3 mos of hopeless searching, I ended up calling our church, and BINGO! We found a nice older woman who is willing to come to our house and care for my 2 boys. She has nursed her diabetic mother, lukemia daughter in law, had cancer herself, grandmotherly type. I was/am very hesitant to let anyone watch my kids-I'm to darn particular about some things. However, if we want to continue to eat, I have to take this step. I hope everything will work out okay. My friend swears she is a "godsend". I'm not very religious, but I am starting to think she was right. Hopefully someone will fall out of the sky for you too! Good luck

 

[SeasonsOfLove]

Coll had sitters when I went back to work when she was 2. Many of our sitters were found through a local university job board. We were very fortunate - our sitters were fantastic people and Coll really benefited from having energetic young women to spend time with! I too was very very leery about hiring strangers, but I learned to trust my instincts, check their references, etc.

Best of luck

 

[anonymous]

My wife and I have no problems putting both of our children in daycare. Sure we face the fact that that our daughter with CF will more than likely be an easy target for colds and other things out there. But we also realize our daughter has the time of her life at daycare and why should we take that away from her. We want her to live life and not be sheltered or held down by the fact that she has CF. Are we going to hold her out of school when she turns five or teach her at home "NO" we want her to interact with others. We want her to be a kid, she just happens to be a kid with CF. I work in Medical Sales and my wife is a teacher, it was a choice that we made not for the sake of money but for the sake of making her life as normal a possible.

Chuck father to Avery 2-years-old w/cf, and Rhett 6 months carrier.

 

[rose4cale]

We've also been struggling since ours son's diagnosis. At the same time my husband had a job transfer which forced me to leave my job. I have tried to go back to work twice (it's been a year now) and I simply am not comfortable with it right now. The one day he was at the sitter, he drank from a hose, was a dirty mess. Other kids were running around drinking from each other's cups. I knew it wasn't fair to the sitter to change her rules for my one child. So I am staying home and doing childcare part time in my home. Today was a HORRIBLE day though!!! But I still have control...Kind of. I would like to find a part time evening job during the Holidays for extra$$ and some time away.

 

[anonymous]

Kathy,

Did Colls' babysitters ever do her PT? I hardly ever leave my children but lately I've been wondering if I need to get a regular babysitter and teach them her PT?

 

[anonymous]

I think asking your sitter to do PT would be asking a lot. I can see if there is a vest that the child can wear, but doing it maually is asking a lot. Especially if there other kids in the house that are being watched.

 

[SeasonsOfLove]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Kathy,



Did Colls' babysitters ever do her PT? I hardly ever leave my children but lately I've been wondering if I need to get a regular babysitter and teach them her PT?<hr></blockquote>

We taught one long term sitter how to do it, but generally speaking I did it. She also was in the very first vest study so we have the original MONSTROUS vest!

 

[Melissa04267]

i personally think asking a babysitter to do pt is too much.. with the vest i could see that but if your still doing it manually id be nervous that it wasnt being done right by the sitter..



Melissa

 

[lovemygirl]

After finding out our daughter had CF I asked my boss if I could go back part-time. We didn't think we could afford it but didn't want her in daycare for at least 2 years. We cut back on a lot of things and 2 years has turned into 5 yrs and she will be starting Kindergarten in 3 weeks. My husband arranged to work an early shift and I worked an afternoon/evening shift. I know this is not feasible for everyone but it worked for us and the 5 yrs flew by. Now I am starting to work more hours but do not intend to return full-time, unless I have to. She was always involved in programs and does very well socially, and last year did a 1/2 day pre-school program.
A lot of people will tell you that you should put your child in daycare so that they do not miss out. I do not agree or disagree but we did what we felt was right in our hearts. The reasoning may be different but keep in mind that a lot of families with healthy children have a parent that stay home and they manage just fine (financially etc).

 

[proudmom2lilCFer]

I guess my problem comes from being a single mom. I don't have that other half of the support system. Their father does live in town, but in 2 weeks, he will be moving about 3 hours away. He isn't any help anyway. Right now I am unable to work because my son is on a continous feed of 22 hours a day. He gets his meds every 3 hours around the clock which leaves me little time to sleep. Plus he has other meds that he gets here and there throughout the day. And on top of all that I have a very healthy, very active 4 year old daughter. I know God is testing me for something. And I am a true believer of what doesn't kill you only makes you stronger. I would like to know if there are other single parents to CFers. And if so, how do they deal with it?

 

[jenniferp]

I'm currently pregnant and I will be induced the week of 8/22. I'm really struggling with my previous decision to leave my job, not only because losing my income would be a really big loss for us, but also because I love what I do so much, it pains me to think of never coming back here. My last day will be 8/18 I have informed my employer I may or may not come back, they have been very understanding of my situation and they hope I will come back although I know I am easily replaceable and there are a number of co-workers ready to take over my position. So, at this point I have four days left and I look around here, at my desk, my things, my co-workers I have built such strong relationships with and I just want to cry. I've been here so long, I just don't know who I am without this job, its kinda like my pet, it was here for me long before my husband.lol I know this may sound stupid but it's how I feel. So, the problem is that I do not want to risk the health of this baby for anything and if that means I need to be home with him then that is without a doubt what I will do. But does it have to be this way? Is it okay to put a CF baby in a regular daycare? Do they discriminate? I originally thought if I did put him into daycare I would be able to do his medications/ PT prior to taking him to daycare and in the evenings, is this not a possability? I was thinking the daycare would only need to give him his enzymes with his feedings, is this right? Has anyone experienced being turned down for care due to CF? I have a 3 year old daughter whom has been in daycare since she was six weeks old, she goes to a care center on base and we really like it and trust most of the caregivers there, they seperate the kids by age groups. The infants are in a room (nursery) by themselves and are not exposed to the older children, its cute because you can walk by the room, they have these big windows and the cribs are right next to them so you can look in at them sleeping. Would that type of environment be a safer one than him being in a room with older kids that are more likely to touch the babies?
Thanks for any advice.

 

[anonymous]

Jennifer,

My daughter Hayley, 18 months, has CF and I also have a 4 year old son without CF. They were both in daycare prior to her diagnosis and I pulled them both out after she was diagnosed. I am fortunate enought to have a mother that is retired and watches them for free! I know everyone is not that lucky and I really don't know what we would have done if she could not watch them. I don't want her to live in a bubble by any means, but I also do not want to expose her at this age to all the germs and illnesses that live in a daycare. So far she has only cultured Staph on the very first culture and some very common thing (haemphilus parainfluenzae??) on the last culture. I want to keep her away from the nastier bugs (pseudomonas and MRSA, ect.) for as long as I can. I do intend to enroll her in preschool for a couple of hours two days a week at age 2½ which is the earliest the preschool I will send her to starts, but I really think that we would have had my husband quit his job and stay home during the day and work PT at night if we did not have my mom. I have a college degree and a much better paying job than my husband and I also have really good insurance, which is the only thing covering Hayley, so I would have to continue to work. I don't think daycares can discriminate based on the CF and I think there are a lot of parents that put their CF kids in daycare as I have seen other posts on this subject. Good luck with your search for care for your son!!