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7 hours ago, shadyridr said:

I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

 

Vinny

Damn I'm not an emotional guy at all but I got a little dusty from this update. 

 

Good to  hear Shady.

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1 hour ago, bigbottom said:

I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 

This may be the most powerful thing I have ever read. And to find it on a fantasy football website just adds to it. 

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This place never ceases to amaze me. What an amazing thing you guys have done here. :thumbup: 

I love this place.  Been here for many many years and it's moments like this that keep me coming back every day. 

Glad you have some positive vibes going Shady. Hang strong brother!

#TeamRiley

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1 hour ago, bigbottom said:

I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 

Just an amazing post BB.   PA

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Positive thoughts to your family Shady. Thinking the very best for Riley and pulling for her along with everyone else here. Having two young children of my own (and one named Reily), your situation is emotionally moving and gets my tears flowing. Do your best to stay strong...Riley will fight through this. 

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7 hours ago, Mr. Ham said:

Hope is there no matter what.  

I feel like we have so much in common.  I had a daughter 3 months ago.  I have a son named Riley.  I have been to the other side of darkness - and emerged.

I have always had an uncommon bond with my Riley.  When he was born the doctor went from asking if I wanted to cut the cord to suddenly serious.  Riley came out purple.  The nurses took him to a table and worked on him for a good 90 seconds before he breathed.  I didn't either.  I had never contemplated that we could lose him, and therefore never realized how much he meant.  I have never been closer to anyone than I am him and it was forged in those moments.

I have also lost a child, and he is with me every day.  My love for him since has been tempered by God's kiln. It has a strength that can only be rendered beyond nature.

You are experiencing love in its rawest form, transformational love.  You'll never let that go, nor will those around you.  We're all so temporary and despite the self-importance we assign to ourselves, fleeting.

What we are all reminded of here is what matters, and exists outside of us.  That's hope.

Ham, I know full well what you went through. There's not a day that goes by that I don't think of you and BB. I always pay special attention to the words you both say. I don't think I knew your other son's name was Riley or I just forgot but that's a pretty amazing coincidence.

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8 hours ago, bigbottom said:

I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 

I feel like i need to save this somehow.  It is a quote that deserves to be shared to a far larger audience than just us.

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Such phenomenal words on this page, thanks for sharing Ham and Biggie.

 

Shady, Riley also needs your hope.  And whether his time with you is one more day or 60 more years, you will be his dad and he will be your son.  Love him, cherish him, and always hope for his future.  God bless.

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14 hours ago, shadyridr said:

While its true, our insurance should cover a lot of expenses, there is a deductible that I would need to meet when we switch over to my insurance or I can even use the money to pay for COBRA and keep us on our existing plan.

As ####ty as it is to talk about money at a time like this - health insurance is what I do.  If you ever have any questions about your current coverage, and your options at this time (which actually would include the ACA/Obamacare since you've had a qualifying event with the birth) or COBRA - I'm more than happy to help.  Just PM me.  I don't sell in New York, but I may be able to help you sort out some of your options and help you fit some of the pieces together.  And remember, you're doing great.

Edited by matttyl
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Giving a "like" to some of these posts feels so inadequate.  I've always been inspired by those I've seen experience great loss and persevere through it, and bigbottom & Ham are just taking it to another level here with their words of advice & comfort.

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Hang in there Shady.  You have a lot of people praying and thinking about you and your family. 

This place is full of some amazing people.   I am thankful to be part of such a great community. 

 

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2 hours ago, regularguy said:

Giving a "like" to some of these posts feels so inadequate.  I've always been inspired by those I've seen experience great loss and persevere through it, and bigbottom & Ham are just taking it to another level here with their words of advice & comfort.

Agree x 1000. Amazing posts all around and the gofundme is shocking. I still liked those posts regardless. I feel blessed to have three healthy boys and I can only hope to never have to go through what some of these guys have. So glad things are improving for Riley and so hopeful everything gets better.

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4 minutes ago, shadyridr said:

We came home early today because NICU kept getting new babies and youre not allowed in there when they do or when they do rounds. We held her again this morning. Still sleepy but opened both eyes for a little while wider than yesterday. Doc said they are gonna check her phenobarbital levels again and they are gonna try and see if she takes the bottle. Thats huge IMO. They will eventually give her another MRI to see how things improved but too soon right now. I think im in a good place now with all the support and progress that i can take a breather and perhaps take Justin to see CA3 tonight. Dont get me wrong im still nervous as hell but I have a lot more hope thanks to you guys.

You guys need to take care of yourselves too. You won't do her any good if you run yourselves ragged. Great idea to spend time with your other child. I'm sure he would love it and it'd take his mind off his sis for a bit as well.

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13 minutes ago, shadyridr said:

We came home early today because NICU kept getting new babies and youre not allowed in there when they do or when they do rounds. We held her again this morning. Still sleepy but opened both eyes for a little while wider than yesterday. Doc said they are gonna check her phenobarbital levels again and they are gonna try and see if she takes the bottle. Thats huge IMO. They will eventually give her another MRI to see how things improved but too soon right now. I think im in a good place now with all the support and progress that i can take a breather and perhaps take Justin to see CA3 tonight. Dont get me wrong im still nervous as hell but I have a lot more hope thanks to you guys.

And Shady, I'm sure I speak for everyone when I tell you that we all really appreciate you taking time out of your incredibly stressful day to give us updates.  It means a lot to us as you can see that many many of us feel like Riley's almost part of our own family.  We're all really praying, pulling, and hoping for your amazing little girl.

#TeamRiley

 

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36 minutes ago, James Daulton said:

And Shady, I'm sure I speak for everyone when I tell you that we all really appreciate you taking time out of your incredibly stressful day to give us updates.  It means a lot to us as you can see that many many of us feel like Riley's almost part of our own family.  We're all really praying, pulling, and hoping for your amazing little girl.

#TeamRiley

 

 

This.  Riley is a part of all of our lives now. When she gets through this, I hope we're all invited to her key milestones (e.g. graduation date, wedding, etc...).   :)

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3 minutes ago, fred_1_15301 said:

 

This.  Riley is a part of all of our lives now. When she gets through this, I hope we're all invited to her key milestones (e.g. graduation date, wedding, etc...).   :)

Even if not invited, I'm sure a few of us FBGs will crash it anyway.  Especially if it's an open bar. 

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4 minutes ago, matttyl said:

Even if not invited, I'm sure a few of us FBGs will crash it anyway.  Especially if it's an open bar. 

He better invest that money...he's going to need it. ;)

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47 minutes ago, fred_1_15301 said:

 

This.  Riley is a part of all of our lives now. When she gets through this, I hope we're all invited to her key milestones (e.g. graduation date, wedding, etc...).   :)

Well you did help pay for them ;)

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1 hour ago, shadyridr said:

We came home early today because NICU kept getting new babies and youre not allowed in there when they do or when they do rounds. We held her again this morning. Still sleepy but opened both eyes for a little while wider than yesterday. Doc said they are gonna check her phenobarbital levels again and they are gonna try and see if she takes the bottle. Thats huge IMO. They will eventually give her another MRI to see how things improved but too soon right now. I think im in a good place now with all the support and progress that i can take a breather and perhaps take Justin to see CA3 tonight. Dont get me wrong im still nervous as hell but I have a lot more hope thanks to you guys.

Great news, shady. Take Justin tonight. I'm going with my Justin tomorrow. :thumbup:

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1 minute ago, shadyridr said:

Well you did help pay for them ;)

I have a FBG hat.  Don't recall how I got it.  We need a pic of Rylie in one.

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33 minutes ago, Getzlaf15 said:
35 minutes ago, shadyridr said:

Well you did help pay for them ;)

I have a FBG hat.  Don't recall how I got it.  We need a pic of Rylie in one.

or a FBG shirt.

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56 minutes ago, Getzlaf15 said:

I have a FBG hat.  Don't recall how I got it.  We need a pic of Rylie in one.

I still have a 2013 FBG elevator pass that I bought for $20.  There is no elevator!!

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Great updates Shady!  Enjoy the time with your son tonight!

I have two daughters and one has the middle name Riley.  During both pregnancies, the only boy's name we picked out: Justin.  So I too feel a tighter connection with your family other than being fellow FBGs.

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What a wonderful thread during a really tough time. Over 12k raised. I am in awe of this place sometimes. What a tremendous community. Thank you for taking time to update us shady. My family continues to pray for yours daily. 

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3 minutes ago, comfortably numb said:

Riley bump

Haha just got out of ca3. Felt good to take a breather but also felt a little guilty when it was over. 

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Just now, shadyridr said:

Haha just got out of ca3. Felt good to take a breather but also felt a little guilty when it was over. 

Great movie. Solid, much needed distraction. Hope Justin loved it. 

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1 minute ago, shadyridr said:

Haha just got out of ca3. Felt good to take a breather but also felt a little guilty when it was over. 

No guilt, Justin needed it as much as you did. You deserved to give him that and he deserved it.

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5 minutes ago, shadyridr said:

Haha just got out of ca3. Felt good to take a breather but also felt a little guilty when it was over. 

Don't feel guilty. You're doing right for your family. It's healthy to take a breather.

#TeamRiley

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9 minutes ago, shadyridr said:

Haha just got out of ca3. Felt good to take a breather but also felt a little guilty when it was over. 

I'm glad you had fun at the movie. Your brain needs rest too. We can't be "on" 24/7. We can do it for a while but your body and mind need to regenerate too. Get something to eat, drink some water and try to sleep. Take care of yourself and encourage your wife and son to do the same. 

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Shady,

I can't imagine what you are going through, but you and your family are in my prayers.  If you need anyone to talk with PM me.  I know we don't know each other from a hole in the ground, but I am also a dad of a 1 & 4 year old who both had emergency surgery for pyloric stenosis at 2 weeks old.  Nowhere on your level, but if you need to talk.

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Vinny, found my way across your Facebook page, and saw that you made the posting (difficult as I'm sure it was).  It was a good move, it will alert those who care about you guys but maybe didn't know, and it will spare you and your wife from having to constantly explain a difficult situation.  

T&P brother.  By the way, didn't realize you were a SJU guy.  I grew up nearby, went to high school right down the block, drove past there almost daily, went to the local bars there, and saw some b-ball games there (and don't live very far from there still today).  Strange how this community feels so distant and yet it's a much smaller world than it seems.

Best to you, and pulling for more positive yardage today for beautiful Riley,

Oats

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12 hours ago, shadyridr said:

Haha just got out of ca3. Felt good to take a breather but also felt a little guilty when it was over. 

Realize one thing- everything takes a toll on you and your family. If you try to be superman and do everything for everyone at all times then at some point you will break down- it is just how humans are. You need to make sure that you are not only taking care of Riley but also Justin and your wife.... oh, and there is you too. Sure, you are low man on totem poll but you need care to. If you break down, how much support does everyone else lose? Don't let guilt run you into the ground.

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1 hour ago, Chadstroma said:

Realize one thing- everything takes a toll on you and your family. If you try to be superman and do everything for everyone at all times then at some point you will break down- it is just how humans are. You need to make sure that you are not only taking care of Riley but also Justin and your wife.... oh, and there is you too. Sure, you are low man on totem poll but you need care to. If you break down, how much support does everyone else lose? Don't let guilt run you into the ground.

Not hijack but I've been told this by many people while dealing with my wife's situation.  It's too easy to put yourself last and/or ignore your own needs.  I understand the reality but it's difficult, for me at least, to put myself ahead of my family.  The guilt becomes oppressive at times.

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20 minutes ago, Capella said:

Can't remember where the post was where you said you were donating 5316, but :thumbup::thumbup::thumbup: 

Top of pg 12 other thread..

Edited by CurlyNight

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