I now have two children with CF, advice please

[Shelley]

Hi,

Hope you are all keeping well with the Covid-19 out there.

I have 4 children, my older 2 (son 11, daughter 8) do not have CF. I have a 19 month old daughter with CF and a 2 week old son who has also been diagnosed with CF a week ago.

I was just getting the hang of this CF world when I fell pregnant with my son so to be in this situation ago just feels like I am living in a nightmare that I cannot wake up from, to feel this heartache once is bad enough but to feel it twice just feels like torture.

Are there any parents with more than one child with CF who can offer me any advice on do’s and don’ts, any words of positivity or just to say there will be happy times because at the minute I’m feeling so low and broken as a mum.

Thank you all in advance.

Shelley
xXx

 

[mmdubin]

Hi,

Hope you are all keeping well with the Covid-19 out there.

I have 4 children, my older 2 (son 11, daughter 8) do not have CF. I have a 19 month old daughter with CF and a 2 week old son who has also been diagnosed with CF a week ago.

I was just getting the hang of this CF world when I fell pregnant with my son so to be in this situation ago just feels like I am living in a nightmare that I cannot wake up from, to feel this heartache once is bad enough but to feel it twice just feels like torture.

Are there any parents with more than one child with CF who can offer me any advice on do’s and don’ts, any words of positivity or just to say there will be happy times because at the minute I’m feeling so low and broken as a mum.

Thank you all in advance.

Shelley
xXx

Hi,

Hope you are all keeping well with the Covid-19 out there.

I have 4 children, my older 2 (son 11, daughter 8) do not have CF. I have a 19 month old daughter with CF and a 2 week old son who has also been diagnosed with CF a week ago.

I was just getting the hang of this CF world when I fell pregnant with my son so to be in this situation ago just feels like I am living in a nightmare that I cannot wake up from, to feel this heartache once is bad enough but to feel it twice just feels like torture.

Are there any parents with more than one child with CF who can offer me any advice on do’s and don’ts, any words of positivity or just to say there will be happy times because at the minute I’m feeling so low and broken as a mum.

Thank you all in advance.

Shelley
xXx

Dear Shelley,
I’m so sorry that you’re going through this- I’m sure that you feel that this is an overwhelming time, and it is. I have 3 kids with CF, my oldest is now 24 & needs just a little support keeping up with his meds, my daughter is 22 and thinks that she’s invincible & my youngest is 20 and also has autism. The only way that you can manage all of this is to enlist relatives & friends for help. Perhaps they can help with the older kids, so their lives aren’t so distrupted. The older kids themselves can assist with keeping an eye on the baby while you are performing treatments on your toddler. Start at a CF center and depend heavily on the team there- let them set you up with specialty pharmacies & equipment vendors. Hire trained professionals if you can can, to do the vital job of cleaning your house & doing the laundry while you are doing the essential treatments.
If possible, color code or label each child’s equipment. Keep lists of things you will need for each child , and try to stay a month ahead. If friends offer to make you dinners or pick things up for you, take them up on it. You’ll return the favor sooner than you think. Just keep breathing. It will all get easier as you settle into a routine. Get at least one portable nebulizer so you’re never without one when you’re on the run. Set a treatment schedule & stick to it. Keep breathing.
wishing you the best & please write if I can offer you any “words of wisdom.”
Stay well cause you need to take care of your kids.
Michelle

 

[Printer]

Hi,

Hope you are all keeping well with the Covid-19 out there.

I have 4 children, my older 2 (son 11, daughter 8) do not have CF. I have a 19 month old daughter with CF and a 2 week old son who has also been diagnosed with CF a week ago.

I was just getting the hang of this CF world when I fell pregnant with my son so to be in this situation ago just feels like I am living in a nightmare that I cannot wake up from, to feel this heartache once is bad enough but to feel it twice just feels like torture.

Are there any parents with more than one child with CF who can offer me any advice on do’s and don’ts, any words of positivity or just to say there will be happy times because at the minute I’m feeling so low and broken as a mum.

Thank you all in advance.

Shelley
xXx

I am not a parent but I am 80 years old and obviously I have lived with CF for all of my life. I was dx at age 47 so of course I went untreated for all of that time. My parents, like you, had 4 children but only spread out over less than 5 years, I was the oldest. All of my siblings are carriers. When I was born my life expectancy was only 6 months. I won't go into all my health problems that my mother had to deal with. Not considering how she found the time to take care of my siblings. I have always said that if my mother knew that I had CF she would have tied me to a chair in order to protect me. Instead, I spent ever moment that I could at the local playground or at the YMCA. I was a Lifeguard at an Atlantic Ocean beach for five summers. I have two College Degrees. I have been married for more than 55 years. My simple advice to you is, except for medical treatments and hospital admissions, treat all four of your children equally. Don't let the CFers take advantage of their illness, and don't let the CFers slack off.

Bill

 

[Ratatosk]

My son was diagnosed shortly after birth and it was a very overwhelming time. While we have just one child I'd suggest getting into a routine in terms of treatments, medications, eating.... Just one step at a time. Write questions down for clinic appointments, write info down during appointments so you don't forget

 

[Printer]

Ratotosk: How old is your son and how is he doing now?

 

[Ratatosk]

He's 16 years old. Busy high school sophomore --- band, trapshooting team... Primarily had digestive issues to start. Severely pancreatic insufficient. Struggled to get him to eat, so we were always pushing extra calories. We still keep the treatment routine. With Orkambi he went thru significant growth, clear cultures for first time since he was a few months old.

 

[Printer]

Good for him and good for you.

 

[st2019]

You will get through this. Here are two things I did while raising my son with CF.

First, a the rule that I followed with respect to anything I did involving my personal and professional life -- how will it impact my son who has CF? If I thought the impact would be negative then I would avoid it.

Second, I kept hope in advances in medicine. CFers are living longer. Some patients now have medicines to treat the underlying problem and there are going to be more on the way.