Parents of CF Kids Working

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I think it sounds like you've got a pretty good arrangement going there with a job that lets you work the amount that you are comfortable with and that it lets you be there for treatments. The work question for CF parents is a wierd intersection of financial, emotional, and healthcare that is unique to each family so none of us should feel guilty for the way our situations lead us to choose (or force us to choose).</end quote></div>
 

anonymous

New member
Hi Sonya mom of Hunter 3 yrs w/cf .I had to quit work after Hunter was born I went back for about 6 week's and thing's started going wrong with him . So I have been home since between hospital and all .I stay at home Sunday through Friday and I go out and do all the shopping for the week on Saturday and let me tell you I need that time to myself .
You should do what you feel is best for you and your family .
 

anonymous

New member
I think its a personal decision. I have been a SAHM since my 3rd child was born. At that point daycare costed more than I made! As a young, not yet through with college mom.

I've worked off nad on part time but not much. My 11 year old w/CF was so sick she was unable to start school and was homeschooled up until this year, just no way she could go to school and her doctors agreed. She's in a small private school now but I can see her wanting to be homeschooled again in the future so she can focus more on her music(she's a VERY talented piano and violin player who wants to learn drums and guitar...school limits her practice and lesson time, homeschooling would free up half of her day and give her lots more time). And I want to be able to do that if she desires. Still homeschooling my 16 year old w/CF, she did half a year in school and the due to non CF health issues we had to pull her out. I wouldn't have felt as able to if I were working

And with my youngest, he was in the NICU from Dec-Feb...home less than a week and readmitted, spent a month in the PICU, is facing a liver transplant. Just has A LOT of issues. If I was working before he was born, I would have quit after!

But its a personal issue. I don't think either makes someone a bad parents. Just like I see school choice as a personal decision. Even though I am at home, I made the choice to send my healthy 3 year old to daycare, for her it was the right choice just as homeschooling is the right choice for my oldest and just like not working is the right choice for me.

If you enjoy working and your daughter likes daycare....then hey nothing wrong with that! I say Go Girl
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

hi charlotte . hope you don't mind me asking, but do you get carers allowance? will you lose that if you work more than 15 hrs a week? i'm only asking 'cos i get that benefit for joe. i want to work, i'm slowly going insane at home<img src="i/expressions/devil.gif" border="0">,but if i work more than 15 hrs a week i will lose that money. it's £40 a week. if you don't claim that money ,( you are entitled to it) you should apply for it. if your daughter gets disability allowance at the middle or higher rate you are entitled to carers allowance. take care janet. ps hope you don't mind me poking my nose in<img src="i/expressions/face-icon-small-blush.gif" border="0"></end quote></div>

Hi Janet, you're not poking your nose in at all! My parents look after my daughter while I am working, so they claim Carers Allowance.

Charlotte<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
oh! thats great for you , means you are not limited in the hours you work. i can only look for a job of 15 hrs or less and i'm deaf, should be a doddle!!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

anonymous

New member
To anonymous

I wouldn't call it a doddle at all.

Charlotte<img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

anonymous

New member
PS and I am limited to the hours I work cos I have to, should I say want to be around for my daughter at the most important times of the day, eg morning and evening to do her treatments. It works out just fine.

Charlotte<img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>



I think it sounds like you've got a pretty good arrangement going there with a job that lets you work the amount that you are comfortable with and that it lets you be there for treatments. The work question for CF parents is a wierd intersection of financial, emotional, and healthcare that is unique to each family so none of us should feel guilty for the way our situations lead us to choose (or force us to choose).</end quote></div></end quote></div>
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>

Charolette, in my personal opinion your daughter is at the age where she NEEDS to be interacting with other children and adults at schoo/daycare/preeschool and it will only do her good to do so. You shouldn't feel at all guilty about getting out of the house to work some hours each week. You already stated you are there for the treatments and medications. sounds like you are doing what needs to be done for your family, and maybe for your own sanity <img src="i/expressions/face-icon-small-smile.gif" border="0">



If you are unhappy about working and can afford not to, then don't. But some people love to work and they should!!!</end quote></div>
 

hbendz

New member
I just found this message board and cannot express how relieved I am. I am 26 weeks pregnant with a little girl that has CF. As my husband and I prepare for her arrival (her name is Maggie-Faye) my main stress factor is thinking about child care. Living in the San Francisco Bay Area is a double edged sword. On the positive, Maggie-Faye will receive amazing care. I am fortunate to work at Genentech so we have amazing benefits AND I am surrounded by scientists and doctors that provide me information about CF. However, San Francisco is so expensive there is no way we can live here on one income. We are considering moving to Charleston, SC where my family is and we could afford for me to stay at home. However, my husband is having a time finding a job in that area. So, until he finds one and we move, we have to have outside care for Maggie-Faye. Up until now, I had yet to hear of a working mother with a CF child. I am relieved to know that you exist! So, now the question is what type of childcare. A nanny is too expensive for us. So, we are considering small daycares, no more than 6 children enrolled. Fortunately, I will be home with her the first 4 months and my husband may stay home with her the 5th month. Any words of wisdom and comfort you can offer about this topic, or having a CF child in general is greatly appreciated!

Sincerely,

Holly
 

anonymous

New member
Hi Holly,

We live in Vacaville, CA. I am a stay at home mom so I can't help you on that issue. But I did want to mention that our son is seen at Lucille Packard at Stanford for his CF care. They are excellent! Just thought I would throw that out there if you were looking for different clinic options.

Nicole
 

hbendz

New member
Thank you, Nicole!

We live in Menlo Park about 5 mintues from Stanford. So, Maggie-Faye will be born at Lucille Packard and eventually treated. I am SOOOO glad to hear you say they are excellent! We are going to try and meet Dr. Moss and establish contact with the center even before Maggie-Faye arrives. We should find out on June 16th if she will be born with a blockage. We are praying that she isn't. However, we have been advised to have her start enzymes after she is a week old. Sometimes I get so overwhelmed with all the information. I have to stop and remind myself to take things one day at a time.

Thank you, again, for your thoughts!

Holly
 

Ratatosk

Administrator
Staff member
Holly,

Before our son was born, before we knew he had CF, I was having a heck of a time finding daycare for him. I'd been warned about trying to find good daycare way in advance of his birth. He was due the middle of June and I was looking franticly in February. I called so many and was frantic. There was a daycare center that had a spot available, but they wanted a deposit and the cost of child care was $40-50 more a week than smaller, home based daycares. Finally my husband asked some work aquaintances, who lived in our area and had small children and one directed us to the daycare center. They raved about it.

So when DS was born with CF, I panicked -- would I need to get a nanny, try to find someone to come to our home, we had good jobs, but would we need to move so family could help us out. I was wracking my brain thinking of some SAHM's that I used to work with, wondering if they'd be interested in caring for DS. Spoke to the CF staff at the hospital none of them gave us an indication that we'd have to get a nanny, or that I would have to stay at home --- some stressed small daycares. When we mentioned that I'd already arranged for a daycare center -- a larger daycare with 70-90 children total, the doctor asked how many babies would be in his room, would he be in contact with other children -- specifically germy toddlers. Answer was about 6 babies, toddlers, preschool and afterschool program kids were all separated.

So at 3 months old, DS started his school career and has thrived. They know how to give him enzymes, keep us informed if there are any children out with various bugs, they sneak high calorie things like butter, peanut butter into his food. Once they mixed him a milk shake and told the other kids that somehow the milk got all frothy. I love that they encourage the children to play outdoors, even in the winter time they take them for walks or have activities. My son is 3 year old and he's all boy. Loves to play outside, loves playing with other kids.

My suggestion is if you find a good daycare facility, whether it's just a few kids or a larger facility -- check it out. See what your gut feeling is. I know of another family of a CFer my son's age who lives 90 miles north of us -- their child wasn't diagnosed until she was almost 2 -- they opted to keep their daughter in the daycare center she'd been attending since she was 2 months old.

You have to do what you feel comfortable doing and what you feel is in the best interest of your child. We feel that our son is at a good facility, receiving good care and having a great time and we're able to go to work knowing this.

Liza
 

anonymous

New member
Liza,

You have no idea how much I appreciate your words. For the first time, I don't feel alone. It is so comforting to hear that someone else has gone through the mind-spin of childcare and CF. I am so glad to hear that it has worked out for your family. Genentech offers daycare on-site. However, I placed us on the waitlist when I first found out I was pregnant...and there are about 200 babies in front of us. So, we shall continue our search. We are going to the CFRI conference in August and hope to meet other working mothers with daycare recommendations. The fact that families are working and their children are ok in itself gives me such a sense of relief. Any other advice you have is welcomed!

Thank you!!

Holly
 

Ratatosk

Administrator
Staff member
Glad to have helped. Finding good daycare is stressful under normal circumstances. We were fortunate that DS spent his first 4 weeks of life in a NICU at an accreditted CF facility. So we got to know the CF staff and ask questions, hear stories about other patients and their families -- that they can lead normal lives. It wasn't the case when we got back home and went to our regular clinic and hospital. The pulmonologist on staff is very much against day care and told me to stay home or get a nanny.
 

anonymous

New member
I cant imagine a child w/cf in a daycare center. There are soooo many germs going around and it would be almost impossible for the child not to get sick often.
You are also giving the responsibility of the enzymes to someone you dont really know.

I have three kids, two w/cf. I need to work also. So, what I have done is work the 4pm-12am shift. Believe me, it is no picnic. Taking care of three kids during the day and then shelping off to work all night. My husband gets home in time for me to get to work.

But, at least oneof us is always home for the kids. Deb<img src="i/expressions/heart.gif" border="0">
 

janjoe

New member
i know what you mean deb, but children start school at 5 yrs old and all children , unfortunately, when they start school get every bug going cf or not.
 

Ratatosk

Administrator
Staff member
It wasn't an easy decision to make, but in the back of our minds, we kept thinking eventually DS is going to be going to school and will be exposed to germs. I've got a friend with nannies for her two children and another who stays at home with her 3 year old and has a couple of school aged children. Those children are just as sick, if not sicker than kids who go to daycare. Don't know whether it's because the school aged kids bring home bugs to the younger ones or it's just the "luck of the draw."

We decided to see how things went and if DS couldn't remain in daycare -- ended up getting sick way too much, then we'd rethink our options. Our doctor told us that daycare or not, our son was going to get his fair share of colds and normal childhood bugs, just keep an eye on him, learn to know his cough (if he has one). First year in daycare -- he got a couple of ear & sinus infections -- one in October, one in June and he got a stomach virus (barfing) when he was two and just this spring he got a head cold, which developed into a cough.

Basically you have to do what's right for you and your family. We were fortunate that we found a good fit at our daycare. As I mentioned before, a friend of mine's granddaughter was in a daycare for almost two years before they found out she had CF -- not because she was frequently sick, but because she had constipation and sinus issues. Liza
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I cant imagine a child w/cf in a daycare center. There are soooo many germs going around and it would be almost impossible for the child not to get sick often.

You are also giving the responsibility of the enzymes to someone you dont really know.



I have three kids, two w/cf. I need to work also. So, what I have done is work the 4pm-12am shift. Believe me, it is no picnic. Taking care of three kids during the day and then shelping off to work all night. My husband gets home in time for me to get to work.



But, at least oneof us is always home for the kids. Deb<img src="i/expressions/heart.gif" border="0"></end quote></div>

Hi Deb

I know we will be giving the responsibility of giving enzymes by the Playgroup Supervisor, that is what worries me. My eldest daughter went to the same Playgroup (Pre-School). So therefore, I want my daughters to do the same. My youngest daughter really wants to go and I know that it will do her good to interact with other kids. Did your kids go to Nursery? How did you manage with enzymes?

Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
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