Some amazing people milling around this place!First off praying for you and your whole family.
I'm not much of a poster but our story might bring you a little hope. We foster and received a call to take in a 3 month old with severe medical issues, she was 6 lbs 10 ounces when she came to our home. She had a grade 4 brain bleed on the left side, and a little brain bleed on the right. We were never told anything more about what caused it cause I think the doctors didn't know or cared for that matter. When the social worker who dropped her off said I hope she doesn't die on you, the prognosis was very bleak for her. Couldn't imagine if this happened to my own daughter. At first she was way behind because of the neglect and the brain bleeds. When she was a year old she first started to crawl by using her head,it is amazing how kids can adapt, so expect some delays. A lot of appointments for doctors, one thing that was never told to us until she was 9 months old, was that she should have been in therapy right a way, so don't wait to get her started you want to do this right away. Help me grow, occupational, and speech therapy will all come out to your house and you should take advantage of these services. We were told she would never walk or run or be normal but my wife never accepted what the doctors told us for her, my wife worked with her everyday doing exercises. Now she can walk, she has some trouble running, she drifts to her right and will fall but we will continue to work with her on this. She just turned three in March and I look forward to seeing her further progress. She is our little miracle baby cause she has defied the odds. and we hope your little daughter will do the same.
1,000,000 times this.Keep posting shady. We love the updates and photos and everything else
Rules. Great song. Great sentiment.
She's doing good still. Doctor basically said one she starts eating they can send her home. That's the tough part now. She's still not really taking the bottle. Doctor said it could be slow process and they will try different techniques
I've been gone for two weeks and was absolutely stunned by this. I am very glad it's taken the course it has and wish continued progress for Riley. I don't have any sage advice to give but maybe I can give you a little hope.
When I was born I had some serious issues. My heart stopped beating 6 times in the first 3 days and on a couple occasions had several minutes pass before they could get it going again. I spent the first 6 weeks of my life in ICU before finally being discharged. I've since led a completely normal life with no lingering complications.
I'll be thinking of Mrs. Shady, Justin, yourself, and most of all, Riley. I wish you all the best.
GBshadyridr said:Yes I plan on calling early intervention the day we are discharged from the hospital. I wish I can do it even sooner
You may want to try different baby bottle nipples. I know a couple whose baby had difficulty also and they tried seemingly dozens of them but found one that workedfred_1_15301 said:She'll eventually figure it out. Babies are ridiculously resilient.
Thanks I was just gonna call 311GB
I have a friend who is an occupational therapist in NYC specializing in children. I have reached out to her to see if she has somebody working out of staten island who might be a good resource (my friend is on maternity leave)
If you'd like, please PM me and I can get you in touch with whoever she knows even if it is just to give you an idea of what to expect and what you might want to look for
If I'm overstepping my bounds, no problem at all v just thought I'd offer
Wow.First off praying for you and your whole family.
I'm not much of a poster but our story might bring you a little hope. We foster and received a call to take in a 3 month old with severe medical issues, she was 6 lbs 10 ounces when she came to our home. She had a grade 4 brain bleed on the left side, and a little brain bleed on the right. We were never told anything more about what caused it cause I think the doctors didn't know or cared for that matter. When the social worker who dropped her off said I hope she doesn't die on you, the prognosis was very bleak for her. Couldn't imagine if this happened to my own daughter. At first she was way behind because of the neglect and the brain bleeds. When she was a year old she first started to crawl by using her head,it is amazing how kids can adapt, so expect some delays. A lot of appointments for doctors, one thing that was never told to us until she was 9 months old, was that she should have been in therapy right a way, so don't wait to get her started you want to do this right away. Help me grow, occupational, and speech therapy will all come out to your house and you should take advantage of these services. We were told she would never walk or run or be normal but my wife never accepted what the doctors told us for her, my wife worked with her everyday doing exercises. Now she can walk, she has some trouble running, she drifts to her right and will fall but we will continue to work with her on this. She just turned three in March and I look forward to seeing her further progress. She is our little miracle baby cause she has defied the odds. and we hope your little daughter will do the same.
I'm a strong supporter of early intervention and believe it has changed my daughter's life. She was born with a rare genetic disorder called '2q23.1 microdeletion disorder' (doesn't have a real name yet since only 300 have been diagnosed), which we didn't get diagnosed until she was two. Since then she has been in the early intervention program, received speech therapy 2-3 times a week (didn't speak an entire word until 3 1/2), OT/PT, social skills classes, and has a behavioral therapist who comes to our home five days a week. A ton of work but she is doing amazing - in a typical 1st grade classroom (with an aide primarily to manage her behavior and help her focus) at a high-performing school and can read and do math better than many of her classmates. Her speech is understandable and improving weekly. The kids love her and she's constantly getting better developing friendships. We had a meeting recently with the geneticists at UCLA who are writing papers on the deletion and she is doing better than all of the children they've studied. All I can say is be your child's advocate and get as much help as you can early on - even if you think it's too much do it anyway because you can always reduce it later if it's not needed.shadyridr said:Yes I plan on calling early intervention the day we are discharged from the hospital. I wish I can do it even sooner
Nice to hear this cstu. Kudos to you and the wife - sounds like you are both great parents.I'm a strong supporter of early intervention and believe it has changed my daughter's life. She was born with a rare genetic disorder called '2q23.1 microdeletion disorder' (doesn't have a real name yet since only 300 have been diagnosed), which we didn't get diagnosed until she was two. Since then she has been in the early intervention program, received speech therapy 2-3 times a week (didn't speak an entire word until 3 1/2), OT/PT, social skills classes, and has a behavioral therapist who comes to our home five days a week. A ton of work but she is doing amazing - in a typical 1st grade classroom (with an aide primarily to manage her behavior and help her focus) at a high-performing school and can read and do math better than many of her classmates. Her speech is understandable and improving weekly. The kids love her and she's constantly getting better developing friendships. We had a meeting recently with the geneticists at UCLA who are writing papers on the deletion and she is doing better than all of the children they've studied. All I can say is be your child's advocate and get as much help as you can early on - even if you think it's too much do it anyway because you can always reduce it later if it's not needed.
My son had the same thing happen, as mentioned before in the thread. He was in the NICU a total of 10 days. I think it was day 8? that he just started eating on his own. Before that he had a feeding tube that they did all his feeding through. He just kinda picked it up one day, and now the kid doesn't stop eating. This is great progress Shady! Hopefully we'll be seeing pics of her passing her carseat test before she gets sent home.She's doing good still. Doctor basically said one she starts eating they can send her home. That's the tough part now. She's still not really taking the bottle. Doctor said it could be slow process and they will try different techniques
No progress today. Another thing i worry about is she doesnt cry at all. Doctor said it is probably due to the stroke and she is still not recovered from the stroke. Nobody really knows how long these things will take. Progress could take a long time. The whole thing is draining.Rileybump
If you want, I can phone into you with my twins on speaker phone and pump in the delightful sounds of teething, sleep-hating 10-month old babies who sound like a cross between cats being tortured, bad speed metal and Nancy Kerrigan after her knee got pummeled.No progress today. Another thing i worry about is she doesnt cry at all. Doctor said it is probably due to the stroke and she is still not recovered from the stroke. Nobody really knows how long these things will take. Progress could take a long time. The whole thing is draining.
Haha id give anything to hear MY daughter cryIf you want, I can phone into you with my twins on speaker phone and pump in the delightful sounds of teething, sleep-hating 10-month old babies who sound like a cross between cats being tortured, bad speed metal and Nancy Kerrigan after her knee got pummeled.
Can only imagine gb.No progress today. Another thing i worry about is she doesnt cry at all. Doctor said it is probably due to the stroke and she is still not recovered from the stroke. Nobody really knows how long these things will take. Progress could take a long time. The whole thing is draining.
Give it time Shady, just look at how far's she come in just a few days. She had a super serious event and her primary systems need all her energy to recover.Haha id give anything to hear MY daughter cry
Man, that just made me well up.Haha id give anything to hear MY daughter cry
Have you showed her GM's haircut?Haha id give anything to hear MY daughter cry
I think she's just a very strong woman already. Giving everyone the silent treatment because she's pissed off. I'd say she's ahead of the game.Haha id give anything to hear MY daughter cry
You are a rich and lucky man. Rich in the only thing that really matters. I envy you, though I have had good fortune myself.If you want, I can phone into you with my twins on speaker phone and pump in the delightful sounds of teething, sleep-hating 10-month old babies who sound like a cross between cats being tortured, bad speed metal and Nancy Kerrigan after her knee got pummeled.
This is progress. I know it doesn't seem much like it, but it is. Those plateaus are normal in pretty much everything humans do. And at the moment, she's being catered to constantly. When she thinks you're slacking, she'll let you know.No progress today. Another thing i worry about is she doesnt cry at all. Doctor said it is probably due to the stroke and she is still not recovered from the stroke. Nobody really knows how long these things will take. Progress could take a long time. The whole thing is draining.
Hang in there Shady , the payoff will most definitely be worth it.No progress today. Another thing i worry about is she doesnt cry at all. Doctor said it is probably due to the stroke and she is still not recovered from the stroke. Nobody really knows how long these things will take. Progress could take a long time. The whole thing is draining.
See @General Malaise your mullet may actually serve a holistic purpose.Have you showed her GM's haircut?
C'mon Riley... give it a good wail! Daddy needs a good night of sleep!Haha id give anything to hear MY daughter cry
Mrs. Rannous said:This is progress. I know it doesn't seem much like it, but it is. Those plateaus are normal in pretty much everything humans do. And at the moment, she's being catered to constantly. When she thinks you're slacking, she'll let you know.
Here.shadyridr said:Spin what post did you talk about your time in the nicu? Sorry things get lost in the shuffle