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RIP Riley (2 Viewers)

The unknown is always the worst.  Is the strabismus due to the stroke?  I was born with that, and I know it wasn't due to any stroke. Some babies just have that with no ill effects over time.

She is a cutie, isn't she?

 
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Sorry you're going through this Shady. I'm sure it is so hard.

Shes beautiful, hang in there, you're doing great.

 
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Mrs. Rannous said:
The unknown is always the worst.  Is the strabismus due to the stroke?  I was born with that, and I know it wasn't due to any stroke. Some babies just have that with no ill effects over time.

She is a cutie, isn't she?
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Strabismus is normal in newborns but  can also caused by stroke and eye issues are another huge effect of ip. So to answer your question I'm not sure and honestly it doesn't matter. It is treatable with eye patch or surgery but that's a discussion for a future time.

 
She is soooooO cute!! So sorry you, her and your fam are going through this. Praying for her daily. Thanks for the updates. She has a huge cheering team sending thoughts, prayers, well wishes.. !

 
They can't send her for therapy yet because the therapists come from different areas of the hospital and they are fearful that her blisters will get infected.

 
Look at this post someone on the Facebook support group for ip posted. Honestly when we knew my daughter had ip I knew she would have some complications but not to the extent she does. My wife had a mild case. I wasn't prepared. It's long so I'll post as spoiler.

Those of you that know me.... know that about twice a year I have a moment... a moment when I feel the deep need to share something that I KNOW someone is needing to hear.  These moments consume me for days before I give in and post.  So I only fought it a couple days.... here you go... someone out there needs this.... you will know who you are when you read it.
(this is extremely personal... and heartfelt... please overlook typos... I have literally cried my way through this)

As many of you, I have several regrets throughout my life.  Typically I try to just learn from these... and usually I find like most of you I am just being overly hard on myself.  But I do have one regret... that to this day consumes me with grief and disappointment in myself.  A regret that I pray Allie will never suffer from and honestly I hope she never notices happened.  It isn't the time I didn't take her to the doctor and it turned out to be a serious situation, not the time I trusted a Dr over my gut and delayed treatment of her eyes, it isn't the time I fell with her in my arms and hit her head, it isn't that I stopped annual visits to her neurologist after 9 years only for her to have a stroke a year later.... none of these are my biggest regret even if they did have negative consequences.  My biggest regret... loosing Allie's infancy to IP.

For the first year.... I was numb.  What else can I say.  Numb from hearing my daughter had a spontaneous mutation of a rare genetic disorder.  Numb from exhaustion (she was about 1 year old before she slept more than 2 hours straight).  Three to five Doctor appts EVERY week... literally except for 2 weeks the entire first year.  I read EVERY thing I could get my hands on.  I researched hours and hours and hours on IP, "treatments", doctors, holistic healings, you name it and I read it.  Suspected seizures, heart problems, and confirmed immune system deficiencies.  Test after test... and a dr looked at me and said... "I can't give you a prognosis... I can't even tell you if she will have a normal life expectancy... you have to wait to see what happens".  I. Can't. Breathe.

I finally paused and took a breath... I'm into her second year.  Oh lord help me... her teeth are coming in wrong.  Her body temperature gets over 107!  Doctors in the ER kept us 24 hours twice because they thought I was doing this to her!  Her heart rhythms are abnormal (what! She may need surgery??  Oh you were wrong... ok.), we have already had 4 EUAs, weekly visits to the ER for seizures.  Alone.  Husband deployed for over a year... no family near... sitting in a surgical waiting areas alone.  Oh wait.. I'm not alone... I have a 3 year old I'm trying to keep things normal for.  I'm afraid to breath too deep because I KNEW I'd shatter.
  
Finally a deep breath.... I'm into her third year.  Sensory issues so severe she can't swing, slide, do stairs, be picked up too fast.  Lord her teeth are coming in still all wrong, her skin is so scarred, her hair is a crazy frizzy mess, she can't play outside due to the heat, she can't be in many public areas and large groups due to risk of infections.  How do I help her????  How do I make people see how great she is and not say mean things to her???  My heart is breaking for her future.  What did I do for her to get this?  How do I tell her she may have many miscarriages, or a baby girl with worse issues than she has, or her baby may die.  How can I stop this for her?  Then another surgery... a same day tonsil procedure turns to a one week hospitalization due to a bad reaction to the anesthesia.  I. Can't. Take. Any. More.  I have some how missed something and it is ruining my baby's life.  Then.... my baby tells me (about 3 months later) "it's all ok because "that man" (pointing at a picture of Jesus) held me while I was in the hospital and my throat hurt, all his friends sang me pretty songs."
My. Heart. Stops. 

I realized at that moment.... I never really had Allie up to that point.... for three years.  I had her IP... I had articles and doctors.  For years as I held her I didn't just stare into her sweet sweet face and kiss her nose and sing silly songs.  I would hold her and see IP and keep thinking how to fix it and how to make it better for her.  I can't tell you her first real word.  I can't tell you when she said momma first.  I can't tell you when she did many cute things.  I know when she had her first MRI, first EUA, her first seizure.  And I'm her mommy.... I'm suppose to know these things!  How did I miss this?

I know this is not because I'm a bad mommy... I know that.  But I ALLOWED myself to loose focus of what is important... even with the serious issues that come with IP... my baby is who was important.  Yes... you will always be their first and biggest advocate... even when you are exhausted and have no clue what to do.  But before you are an advocate... you are a mommy, you are a daddy.... and that little one is your baby.  While you fight the battles with doctors and hospitals... remember before you are a warrior you are a parent.  While IP may set parameters... IP does NOT define your baby.  IP takes enough... do NOT allow it to take your special every day moments.  No matter your day... sit for just 5 minutes... watch their little eyes light up as they accomplish something new, their little fingers grasping and crumbling a cracker, their giggles and silly words.  I promise down the road... those moments will mean more to you than "learning just one more thing about IP".

And that is my biggest regret.... The years of not getting to know Allie as the awesome baby she was.   But she is the one who has taught me to see past the IP... it has taken time though.  Maybe ... just maybe as I type this I feel like this may no longer a regret for me... but rather another way Allie has taught me to live each day.
 
Ive written three posts and deleted all of them. Hang in there Shady. I know its a lot easier to say

 
shadyridr said:
My dad just called me. I guess word travels
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This gives me so many different feelings. Gonna focus on the good and say that despite his past actions, he obviously still cares about you so that can't be bad. You and your family remain in my thoughts and prayers. 

 
Thanks for making me weep openly with that post. I have been through something similar, and I recognize the fear in your post. I recognize a lot of what that woman from the ip group wrote, as well. I will tell you that you will get through this because you are already doing all the things needed to get through it. You are being there for your kids and you wife. You are drawing on the support of your community. You are involved and advocating for Riley.

Your life will not be as you imagined it. When is life ever like you imagined? I learned to mourn my dreams and expectations that I had for my son, in private moments of self-indulgence. I never wanted to see him suffer, or struggle. I had dreams of teaching him to drive, of talking to him about girls, of watching him have his own kids. I miss those dreams, and I feel cheated not to experience them. But I had the real, honest experience of fathering a remarkable young man as he handled the very worst that life could dish out, and never faltered from the happy, strong, determined human being he was. And that experience was so much better, so much richer, than any dream I had.

Your Riley is gorgeous, brother! Your life is already better with her in it. Don't let fear take your focus away from her, or the rest of your family. I continue to hold you in my prayers, and wish you nothing but peace and strength and love.

 
Hang in there Shady, and please keep the updates coming - as long as you are comfortable with it. I know there are a lot of people, myself included, who wake up and turn on the computer and pull up this thread to check on you and Riley. We are all pulling for you guys.

 
Shady, still thinking of you.  Mind is a funny thing and I've found that by time I'd processed things enough to really need support, it'd been given.  Far from any slight on those that showed, it's more an indication that the process is long and the need variable.  So please always reach out and express yourself when you want or need a shoulder.

 
shadyridr said:
The first thing I said when I answered the phone was, so I guess you heard.
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Not sure if that is your father you're referring to.. I didn't speak to my own father for the last 15 years of his life.  I'm OK with that; although it's too late for me.  If I had it to do over again, I would probably do it differently.  Just something to think about.

 
DropKick said:
Not sure if that is your father you're referring to.. I didn't speak to my own father for the last 15 years of his life.  I'm OK with that; although it's too late for me.  If I had it to do over again, I would probably do it differently.  Just something to think about.
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Yeah I haven't talked to him in three years. He's a jackass.

 
Love you Shady, miss you in the beisbol forum this year.  Hoping Riley wins the Noble Peace Prize for awesomeness some day.  :hifive:

 
Thanks for the updates Shady. My son was in the ICU for four months when he was one. Now 19.

Just focus on one day at a time. There will be good and bad days. Don't worry about all that future stuff now. Let it go. You can figure it all out later. Just focus on loving and doing whatever you can to make it better for Miss Riley.

 
She looks adorable still praying for you guys,   seeing her picture,  I'm just wondering if she has CMV (cytomegalovirus).  Which is what our little girl has.  I would have her tested for it just to find out,she has several of the symptoms for it.  Most google Drs. don't even know what it is, and they willl look at you funny(contempt)  for suggesting to have the test done.  Good Luck.

 
shadyridr said:
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.
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Shady, different scenario, but my wife has been disabled since 1998, and she has had several major spinal surgeries. Without getting into a lot of detail, I have been there thinking about the future of her/our quality of life, which has been dismal for many years, and it can be quite depressing. We have made many, many sacrifices, including major ones, like moving to other states twice (with a third time likely upcoming), not having kids, etc.

I found at some point that it helped me not to think of long term future for the most part, but rather just to focus on today, then tomorrow, then the next day, etc. to the extent possible. We also look for what we call small happy moments that would be ordinary and mostly unnoticed by most "normal" people, but we have reached a point where we notice them, and they make a difference.

It is hard to keep it up all the time, but it definitely helps. At first, I thought I had to do this for my wife, you know, the be strong for her thing, and I do think that is important. I avoid saying anything negative around her whenever possible. But eventually it changed me. It has changed my outlook on life for the better.

This is a willful choice that you have to make consciously, it won't just happen on its own (or at least that is how it worked for me). It is also something that should be discussed with all of the adults in your family, as well as close friends and caregivers who will be around a lot, so everyone can at least hear this and hopefully make a genuine attempt at it.

Anyway, it's not the same thing, not trying to compare the situations, just hoping that this might provide a bit of encouragement. Still praying for Riley, you, and your entire family.

 
ProstheticRGK said:
Your life will not be as you imagined it. When is life ever like you imagined? I learned to mourn my dreams and expectations that I had for my son, in private moments of self-indulgence. I never wanted to see him suffer, or struggle. I had dreams of teaching him to drive, of talking to him about girls, of watching him have his own kids. I miss those dreams, and I feel cheated not to experience them. But I had the real, honest experience of fathering a remarkable young man as he handled the very worst that life could dish out, and never faltered from the happy, strong, determined human being he was. And that experience was so much better, so much richer, than any dream I had.
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:goodposting: doesn't do this post justice. One of the best I have ever read online anywhere, not just at FBG.

 
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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I can only imagine how much a toll it's taking but you are doing a phenomenal job getting through it.

 
shadyridr said:
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.
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Worry is interest paid on a debt that never comes due.

I know you can't stop worrying. I also know that there is nothing more precious, especially in your situation, than time. Live in the moment right now, as much as you can. You deserve to.  And there is no amount of worry that will make everything okay.  But a few minutes of just staring at your beautiful daughter and enjoying the preciousness of those minutes can.

 
shadyridr said:
He prays twice a day. As long as he knows she's coming home eventually he's been ok. The only time he got sad was when we told him she might not come home last week.
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This one got me.  Poor little guy.  I'm sure he is so confused.  You are doing a great job being there for him shady.

Come on Riley!!!  

 
Shady - when you are up for it, and I know it's important to your son (and to you) to square away a little distraction time for you, and dad/son time for him... maybe we couple of us NY folks can treat you two to a ballgame - either pro or the Staten Island Yanks or game at Coney Island.   I'll be happy to pay for the tickets, perhaps someone else can grab some of the food and drink, whatever. 

We are like, OFFICIALLY part of your family now, so you better get used to having us around. 

 
shadyridr said:
She ate 30ml!
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Awesome! I still think one of my best memories with my boys as new borns was the feed and burp. I always did the night feedings and put them to bed and I just loved them sucking the bottle dry and then over the shoulder for the pat and burp. Once they burped, off to bed and my only quiet time of the day.

 
She didnt take the bottle at the next feeding but the 30ml was a good start. They are setting her up for another VEEG to check the brain activity because they would like to lower her phenobarbital. A good day today.

 
shadyridr said:
She didnt take the bottle at the next feeding but the 30ml was a good start. They are setting her up for another VEEG to check the brain activity because they would like to lower her phenobarbital. A good day today.
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If the doctors have begun to talk even a little positively about her prognosis, that's a Very good sign.  Riley's got this.

#TeamRiley

 
Koya said:
Shady - when you are up for it, and I know it's important to your son (and to you) to square away a little distraction time for you, and dad/son time for him... maybe we couple of us NY folks can treat you two to a ballgame - either pro or the Staten Island Yanks or game at Coney Island.   I'll be happy to pay for the tickets, perhaps someone else can grab some of the food and drink, whatever. 

We are like, OFFICIALLY part of your family now, so you better get used to having us around. 
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Not to go too off topic but the NY/NJ guys getting together at Yankee Stadium would be (1) expensive as all **** and (2) worth every penny.  I'd be in in my schedule allows.

 
ProstheticRGK said:
Thanks for making me weep openly with that post. I have been through something similar, and I recognize the fear in your post. I recognize a lot of what that woman from the ip group wrote, as well. I will tell you that you will get through this because you are already doing all the things needed to get through it. You are being there for your kids and you wife. You are drawing on the support of your community. You are involved and advocating for Riley.

Your life will not be as you imagined it. When is life ever like you imagined? I learned to mourn my dreams and expectations that I had for my son, in private moments of self-indulgence. I never wanted to see him suffer, or struggle. I had dreams of teaching him to drive, of talking to him about girls, of watching him have his own kids. I miss those dreams, and I feel cheated not to experience them. But I had the real, honest experience of fathering a remarkable young man as he handled the very worst that life could dish out, and never faltered from the happy, strong, determined human being he was. And that experience was so much better, so much richer, than any dream I had.

Your Riley is gorgeous, brother! Your life is already better with her in it. Don't let fear take your focus away from her, or the rest of your family. I continue to hold you in my prayers, and wish you nothing but peace and strength and love.
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Great post.  There's a wonderful poem that addresses the above.  It's written in the context of down syndrome children, but it more generally expresses some thoughts about the unexpected surprise that many new parents face.  shadyridr, I hope you find some comfort in it.

Welcome to Holland

 
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