Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
Thread Tools Display Modes
Old 03-28-2013, 07:36 AM   #71
diana51's Avatar
Registered Users
Join Date: Jul 2010
Location: Holland, MI
Posts: 770
Re: WWDY if your child had a life shortening genetic disorder?



Part time working mom to DD1 (8/09) and DD2 (10/11)

Last edited by diana51; 03-28-2013 at 07:43 AM.
diana51 is offline   Reply With Quote
Old 03-28-2013, 07:43 AM   #72
Registered Users
Join Date: Oct 2006
Posts: 9,365
My Mood:
Re: WWDY if your child had a life shortening genetic disorder?

i agree with last poster. i would not want extensive medical stuff done. I would probably go the lesser route to let them live life pain free as much as possible. and I would want to be with that child as much as possible vs work more. working more for $ to see them so little doesnt make sense to me.

im also that girl that thinks that babies who are not doing well in nicu, should be let to go home to die vs stay in hospital for months & not left on machines and needles for their final days.
homebirthmom is offline   Reply With Quote
Old 03-28-2013, 08:04 AM   #73
Beaners_Mom's Avatar
Registered Users
Join Date: Aug 2007
Location: NY
Posts: 2,447
My Mood:
Originally Posted by PurpleFluff
My daughter who we are adopting has cystic fibrosis. The life expectancy is much better with recent breakthroughs, but average is still about 38 years. Our situation is different because we adopted her knowing her condition and prognosis. Thankfully, her specific mutations result in a milder than normal disease, so her prognosis is for a full happy life.

We do everything we can medically to ensure her health. She takes 3 hours worth of breathing treatments daily just for maintenance, more if she's sick. She also requires roughly twice the amount of calories as an average child her age, so we have to be very good a out meal planning and offering snacks to help her meet her caloric goals. She needs to take enzymes with all food, so everywhere we go I have to pack food, Pediasure, and enzymes. We do not skip treatments EVER even though her docs say its ok every now and then. We do everything we can medically to ensure her health. If there was a new treatment not covered by her Medicaid, we would find a way to pay for it.

Since we are adopting through the foster system, her in-state college tuition is waived, but we are saving anyway in case she wants to go out of state or to cover books and dorm. I am dreading paying for this little diva's wedding

We are taking her education very seriously and enrolling her in speech therapy. I am keeping her out of the public school PPCD class even though she qualifies for it, because her treatments are so time consuming I don't see how we can fit in naps, meals and snacks, family time and school. I am starting a homeschool program with her, and if that goes well I will continue homeschooling at least until she outgrows the need for a nap. At that time we will reevaluate.

Just wanted to share our thought processes on this. We assume she will lead a full life and plan just as we would for an average child. Even if her prognosis was not as good as it is, I would do the same and allow her to be a normal kid as much as medically possible.
CF runs in my family. I have several cousins who have CF kids. You can definitely tell the difference between the ones who were given proper medical care as a kid and the ones who weren't. One of the kids plays and so on. His sister is a cheerleader and does gymnastics. The other cousin has a son who does BMX racing. The one who wasn't given proper medical care when he was younger, isn't in the greatest of health now as a teenager (my cousin actually lost custody to my aunt because of medical neglect of him) and he spends more time in & out of the hospital than the other ones.

Treatments and so on get easier as they get older. I remember as babies we would have to *beat* on them after treatments. Within the last few years they all got vests and that seems a lot easier on them (plus they're all proud they can do treatments themselves).
Partner to my S Mama to my Gabby and Duncan
Beaners_Mom is offline   Reply With Quote
Old 03-28-2013, 09:12 AM   #74
slyeates's Avatar
Registered Users
Join Date: Oct 2011
Location: Houston, TX
Posts: 1,672
My Mood:
My son has a genetic disorder. He is treated normally. He will not be in regular kindergarten next year, but that is only because of his MR.

DS will have a normal life expectancy, but he will likely live with us forever. There is not much known about his disorder yet, but if we did know more, it would not change our views.

We would love to save up for his college, but we do not make enough to pay the bills, let alone save money. Our DD, who is typical, will most likely not have money saved back for her either.
Sarah, Wife to Jeremy, Mama to Aiden 5/08 Cora 1/12 and Sophie 4/14
Heirloom Quilts, T-shirt Quilts, Custom Quilts, Aprons
slyeates is offline   Reply With Quote
Old 03-28-2013, 02:40 PM   #75
momgoddesswife's Avatar
Registered Users
Join Date: Dec 2012
Posts: 346
My Mood:
Re: WWDY if your child had a life shortening genetic disorder?

Thanks everyone for the kind words and all of the opinions and thoughts, I really do appreciate everyone's point of view on this and it's helpful to just hear what others think.

Now that we have had a couple weeks to absorb the news, and I'm able to sleep again, we are able to plan a little more ahead and start thinking about treatment options and looking for specialists. This isn't what we had expected, or planned, but nothing ever is.
Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU

"It's the little details that are vital. Little things make big things happen.~John Wooden"
ISO: WCW cuffed longies or bloomers size Small
momgoddesswife is offline   Reply With Quote
Old 03-28-2013, 05:55 PM   #76
P!nkPepper's Avatar

Formerly Q......9
Join Date: Jun 2008
Location: Midwest
Posts: 9,614
My Mood:
I am so sorry they said that to you. That is terrible! Of course any parent is going to do whatever to try to save their child. Such awful terrible women

DH's ex BIL has CF and he is almost 40! He has had his ups & downs but honestly I think his issues with drugs will get him before the CF does.

Jodie ~ mama to Big K, Medium K & Lil' k
P!nkPepper is offline   Reply With Quote
Old 03-28-2013, 07:07 PM   #77
jen_batten's Avatar
Registered Users
Join Date: Oct 2008
Posts: 11,432
Re: WWDY if your child had a life shortening genetic disorder?

Originally Posted by bdhutier View Post
Of course I would do everything I could medically to make their life better and healthier. Twenty to thirty years is a long time and I would want them to have everything they need regardless of how long they live. And I would do these things for a child who will make it two years,every life is precious and there are no guarantees on how long anyone will live.
This. Plus, sometimes these estimates are way off. My aunt was born with a birth defect, they said she wouldn't make it past six months. When she made it to six months they said a year. Then they said the most she would make it was five years, then early adolescence. Through the power of prayer, she is now fifty one year's old. Praise God. Can you imagine what her life would be like if they had chosen to do nothing because they thought she would only live a few months?
jen_batten is offline   Reply With Quote

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2018 VIX-WomensForum LLC. All Rights Reserved.