Hi ladies: For those of you that have joined and have children with Down's Syndrome, what are your daily lives like. You know what they say do not judge until you walk in ones shoes.
I'd like to hear your day to day stories with your lovely children.
My son has Down syndrome and was born with congenitak heart disease-he has an ASD,VSD,Double outlet right ventricle, Hypoplastic left heart syndrome, he was born premature and had a stomach atresian that was operated on at 2days old, he also has a trach and ventilator and is on alot of meds.
Our day starts at 7am-i give him all his meds theres several then when he wakes up, change him and all his dressings and lotion him up.
Then we attempt to eat breakfast around 9am, he has become very hard to feed by mouth, he has a g-tube in,
then we do physical therapy and occupational therapy for about an hr each then play, then it is naptime at noon, he gets more meds and water through his gtube, he sleeps for a few hrs so i can get a break to clean all his equipment and the house some days other days i nap becuase i stayed up all nite watching him, then he wakes at about 3pm we attempt to eat again then either go for a walk or play, then give meds again, then try to eat dinner at 6pm, then bathtime, change all dressing again give meds and neb. treatments, then g-tube fed food and put down for bed at about 9pm.then i stay up watching him till i cant anymore, then start all over again the next day, somedays are therpay days though or doc. apt. days then our whole day is thrown off. and i am a single mom i get help from my parents but im doing it the best i can alone his dad couldnt handle this lifestyle.
I was 18 when i got pregnant he was almost 21, now im almost 21 and he'll be 23. still cant take it on. ,men truelly arent as strong as they think they are.
Hi Momma: WOW! You certainly have your hands full. Agreed, men are good for some things, but not taking care of the medical needs.
So how old is your little guy? Do you know if he will need the g-tube and trach for life? Or will he be weaned off of everything as he grows up?
Vicky
Quoting tvschiulaz:
Hi Momma: WOW! You certainly have your hands full. Agreed, men are good for some things, but not taking care of the medical needs.
So how old is your little guy? Do you know if he will need the g-tube and trach for life? Or will he be weaned off of everything as he grows up?
Vicky
He is 21 mths, hes not suppose to need either for life, he should be able to have the trach out around the age of 4yrs, thats what the docs said cuz thats when childrens tracheas grow and expand their hoping it comes out sooner. he'll proly be on the g-tube for awhile after the trach becuase hes so difficult to mouth feed now and having the trach gives everyone an excuse for not feeding him its bad when we go to the hospital. the g-tube is just easier and he knows he doesnt need to eat. to be nourished.
Hi ladies, my name is anna and my daughter flower has downs syndrome. she was born on june 20th of this year. i didn't know she was going to be downs til the day she was born. flower was hospitalized for 38 days due to problems trisomy 21, poor feeding mild ccf secondary to left to right via large perimembraneous vsd , moderate asd and large pda and s/p g tube. my day does not seem to have an ending. i start my day at 3 am she is on a 3 hour schedule at 9 she takes all her meds. since she has been home, i have been to so many dr visits with her. by the end of my day she is worth it ! 
Betsab`e Zuley
3 part brain surgery for epilepsy? (piog)
- tvschiulaz
on Jun. 11, 2009 at 10:48 PM