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RIP Riley (2 Viewers)

Yes I plan on calling early intervention the day we are discharged from the hospital. I wish I can do it even sooner

 
My friend's 10-year-old has had three brain surgeries in the past two weeks to relieve extreme epilepsy symptoms.  Basically cutting out portions of his brain.  Each time they go in thinking he may never have the mental capacity to communicate with them again.

He's had setbacks, why three surgeries, but even after the last he came out a trooper.  This was like two days ago so still so early but young kids can be so resilient.  Amazing they go through something that would put most of us on our ### yet they want to play.  

 
bucksoh said:
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.
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Some amazing people milling around this place!

 
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

 
shadyridr said:
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
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She'll eventually figure it out.  Babies are ridiculously resilient.  

 
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.

 
Kanil said:
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.
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:thumbup:

 
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
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GB

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

 
fred_1_15301 said:
She'll eventually figure it out.  Babies are ridiculously resilient.  
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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 worked

 
Righetti said:
GB

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
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Thanks I was just gonna call 311

 
bucksoh said:
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.
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Wow.

GB you, your wife, and that little girl.

 
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
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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.

 
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cstu said:
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.
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Nice to hear this cstu.  Kudos to you and the wife - sounds like you are both great parents.

 
shadyridr said:
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
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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.

 
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QuizGuy66 said:
Rileybump
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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.

 
shadyridr said:
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.
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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.  

 
General Malaise said:
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.  
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Haha id give anything to hear MY daughter cry

 
shadyridr said:
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.
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Can only imagine gb. 

 
shadyridr said:
Haha id give anything to hear MY daughter cry
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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.

When she does cry, record it for us and post it here if you find the time.  Continuing to send my prayers and hopes to you and yours.

 
Spin what post did you talk about your time in the nicu? Sorry things get lost in the shuffle

 
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General Malaise said:
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.  
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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.

 
shadyridr said:
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.
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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.

 
shadyridr said:
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.
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Hang in there Shady , the payoff will most definitely be worth it. 

 
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.
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:goodposting:

Every time I see these updates it seems (to me from a million miles away) that this child is stabilizing, really digging in, and fighting the good fight.  And it seems like she's winning.   Hoping and praying she continues to improve.

 
shadyridr said:
Spin what post did you talk about your time in the nicu? Sorry things get lost in the shuffle
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Here.

I didn't go into too much detail, but I'd be glad to if you'd like.  I know what you're going through (at least I can relate).  The hardest part for me was thinking I had to be the "strong" and optimistic one, so I put on a front, and eventually broke down.  Seeing my boys in a plastic crib with all sorts of sensors and probes hooked up to them, a feeding tube down their throat is too much.  But the nurses and doctors were great.  My 2nd (the one who had a stroke) was actually a shorter stay then my first.  About 6 months ago he had a seizure while we were on vacation, but the doctors can't really confirm if it was related to his struggles at birth or not.  The hardest thing about it all is the unknown.  They don't know what caused his stroke, and what caused his seizure, but he acts completely normal.  His speech development is on par with kids in his day care.  No loss in motor functions, just a normal, happy and fat little boy.  The 2nd time for me was the hardest, I went through a small bout of depression, did the whole "why is this happening again".  Optimism and hope is such a better route, I'm sure they can feel it.  They let us put pictures along the inside of his cribs, and we brought blankets from home that we slept on so he could "get used to our smell".  Not sure if it matters, but it really helped cheer me up, knowing that he could see me when he opened his eyes (if he could even process pics that young) and a small amount of closeness.

 I have a theory that the doctors say "low chances" to majority of parents in NICU to help set the stage for the worst, but honestly expect higher, if that makes sense.  The fact that she was able to bottle feed at least once was great news, especially with her reaching for it.  You'll have your little niners fan home before you know it.  

 
She's doing the same. I'm trying to hang in there but it's tough. Last week all I wanted was for her to wake up and now that she's awake we are starting to see the effects of the stroke and it's depressing. She wont suck or swallow, she doesnt cry, she has strabismus of her beautiful eyes, who knows what else lies ahead for me. I have horrible thoughts like what if she's permanently disabled? Is that what my life is going to be? Is my son going to have to care for her when we die? Will my son always feel neglected? Will his childhood be destroyed? Will we ever be able to take a vacation again? Will Riley have quality of life? The whole thing tears me up inside. I belong to a pediatric stroke group on Facebook and I read tons of stories of children who suffered similar strokes and are doing well today. I know there will be tons of ups and downs but that is the hope I'm trying to hold on to right now. 

I may go back to work next week if she's still in nicu. Not much I can do there. I'd rather save some time for the week she comes home. I might work from home all week though. Not sure I can face people and work at the same time right away. My boss is ok with it if needed.

 
 All the questions about the future are expected but it's also best to just try and take one day at a time. You will cause yourself undo stress by worrying about things too far into the future. You still have a beautiful daughter and try and focus on each day with your family. 

 
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