wow I did not realize that there could be that many variations of the heart the pictures at the bottom are very helpful. I never trust statistics that come from drs theres alot of people in 3rd world countrys that can not see a dr and in some cases i bet these people could have a defect that would be 1 in a billion. I wish helath coverage would be free to anyone and everyone around the world
Is she cleared to eat safely by mouth? I'd start with the PT/OT dept at your children's hospital. Unfortunately, the school district will be no help. School districts provide speech, occupational, and some physical therapy, but not feeding therapy, as it is not considered to be a barrier to learning (which is crazycakes.) We had wonderful feeding therapy from our ST through the Early Intervention (called Birth-to-3 in some areas) program. There is a facebook group for kids with feeding tubes and other feeding issues, and I've found them EXTREMELY helpful. https://www.facebook.com/groups/feedingdisordersandkiddoswithfeedingtubes/ (I don't know if that's okay to link here, so if it gets taken down, search on facebook for " Pediatric feeding disorders / FTT/ GERD/and kiddos with feeding tubes") Is your daughter on continuous feeds or bolus, or a combination? I think it's much much harder to go from continuous feeds to oral eating than if you're already doing bolus feedings, or at least bolus by day, continuous by night (that overnight feeding was the first one we cut out, so she'd wake up with some hunger, even if she didn't know what it was yet.) And is she on formula or a blended real food diet?
After her first cleft pallet surgery she was eating everything by mouth then the hole reopened and now i believe shes just scared to eat i wish she could talk and tell me whats wrong. early intervention was a great help but now she is 4yrs old and doesnt get any help for her anymore so its just up to me and her mom thankfully she does get PT at school but thats pretty much it her diet is pediasure with fiber and takes 8oz every 4hrs bolus we were doing the overnight feeds so she could gain weight seeing how shes in the 5th precentile on weight but like you we stopped that do she will be hungry when she wakes up Right now we are trying to feed #2 baby foods and make our own sweet potatoes for her blended with butter and milk but all she wants to do is keep the food in her mouth for a minute then slober it out. Thank you for the fb link i will be checking that out later tonight
Damn i feel for you guys we taught our boy would have defects when he was born because he was only 4 pounds a month early but so far he's 10 months and 30 pounds no issues we were lucky Sent from my iPhone using Grasscity Forum
6lbs and about a month early aswell we were not so lucky at a bit after two yrs.old surgical complications is the only thing that was able to bring this all to light but we will get through this my son is a survivor his umbilical cord was soooo thin he was tiny but he grew so fast and eats anything you put in front of him since birth he seems so normal accept for heavy breathing and accelerated heart beat he is your typical lil boy so that makes this that much harder to accept
My heart goes out to you OP. Kids are so precious and sometimes parents aren't the best.. Hope for the best truly.
thank you sir but honestly life is great my lil one was a blessing without her im sure my life would have been alot different and worse. I agree some people shouldnt be parents #CCC
I really hope the breathing and heart rate regulate as he continues to develop and yah lol my lil guy is the same he will eat anything he had some pizza today lol Sent from my iPhone using Grasscity Forum
Well today we have a appointment with the audiologist to talk about getting a cochlear implant hopefully everything goes good we will also have a hearing test to see if her hearing has improved or gotten worse 2 and a half hour drive but we'll worth it!
The test didn't go well she fell asleep but we got her hearing aids fixed We have to schedule a ABR test within the next 4 weeks I can't stand watching them put her under but gotta get it done.
Oh, ((hugs)) it's so rough when they have to go under general. Especially in the early years! Like, my older teenager? I've had to watch it, and it sucked, but they totally knew what was up, and exactly what was going to happen and why, so it was okay. But under age 9ish, and especially under age 5, it kills me.
Does your daughter understand sign language? That could help with communication. I have a friend who's son was born with MD, and was so weak He couldn't talk or move his hands very well, so she taught him "makeshift" sign language where He opens his hand for "Yes" and makes a fist for "no" I'm glad to know your daughter has dedicated parents. And to everyone else, I wish nothing but fulfilling lives for your children. Be well.
That is awesome I know a lot of parents that do make shift sign language and it works great. Unfortunately my daughter can not open her hands completely and hasn't caught on so far we've been trying asl and seed for 4 yrs now still hoping it will catch on Thankfully she has different cries that me and mom will understand...I'd give anything to hear her say something.
im wellin up as i read this!, i want you to hear her say "i love you daddy" as bad as i want to hear my boy say i to me, one of my biggest fears is that i will never get to hear my son say this to me its gettin close for me next month on this day ill be waiting for my son to get out of surgery at this time and loosin my mind!
Ah man. I can't imagine not hearing my child say anything. My mom has been deaf since 4 years old and recently (2-3 years ago) got the cochlear implant and heard her 3 children's voices for the first time. That must've been the most surrealist moment for her. Good luck to your family @RED BEARD, I'll be keeping you guys in my thoughts and nighttime wishes.
I believe that it will happen we just have to be patient grasshoppers the time will come where they will be verbal and it will be such a great day! Hopefully you will post on here when that does happen and I will do the same. Have you guys got all of your plans ready for the big surgery day?
I watch the YouTube vids on people turning their implant on for the first time it's all tears from the second I push play
we are really more concerned with getting the house ready for him to come home after surgery we will have two grandmas around to help but as far as the surgery day we will have done admission the day before so we will go in they will give him his iv then he will go out in my arms...and be taken for his open heart procedure, we wont get to see him for hrs after that till he is stable and in the recovery part of the icu unit,he will stay in the hospital 4days to a week depending on his recovery and me and his mom will be with him the entire time so it will be a tough bit of time
Yes there will be a hospital bed and a sofa that folds out they bring us blankets, breakfast and coffee they have internet, a childrens vid library, a book cart that comes around really a great hospital experience there are people that come from around the globe to be treated by specialists there so it really is a unique hospital experience