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RIP Riley (1 Viewer)

I have a friend where one of the parents (not sure which one) tripped at the top of the stairs while carrying their newborn.  She hit numerous times on her way down and had severe head trauma. With numerous surgeries, including removing part of her skull, she showed signs of left side weakness, including trouble sucking and hand grip.

That was about a year and a half ago. She's doing amazing now, and honestly you'd probably never know she'd had a traumatic brain injury. She does use braces when she walks, although she could probably do without them now. Her speech is really good and her motor skills are also good.

It took a lot of physical and occupational therapy, but the results are right there. Have faith shady, you and Riley will get through this.

 
Doctor mentioned last night that they think the positive culture may have been a contaminated sample because all other tests keep coming back negative.

Oh and they mentioned the discharge word to my wife. So it could be happening soon. Keep your fingers crossed everyone!

 
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The Z Machine said:
I have a friend where one of the parents (not sure which one) tripped at the top of the stairs while carrying their newborn.  She hit numerous times on her way down and had severe head trauma. With numerous surgeries, including removing part of her skull, she showed signs of left side weakness, including trouble sucking and hand grip.

That was about a year and a half ago. She's doing amazing now, and honestly you'd probably never know she'd had a traumatic brain injury. She does use braces when she walks, although she could probably do without them now. Her speech is really good and her motor skills are also good.

It took a lot of physical and occupational therapy, but the results are right there. Have faith shady, you and Riley will get through this.
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Jesus Christ, those poor parents must feel so guilty. My thoughts are with them.

 
shadyridr said:
Doctor mentioned last night that they think the positive culture may have been a contaminated sample because all other tests keep coming back negative.

Oh and they mentioned the discharge word to my wife. So it could be happening soon. Keep your fingers crossed everyone!
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AWESOME NEWS.  Hope it happens Shady!

 
shadyridr said:
Doctor mentioned last night that they think the positive culture may have been a contaminated sample because all other tests keep coming back negative.

Oh and they mentioned the discharge word to my wife. So it could be happening soon. Keep your fingers crossed everyone!
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Sweet! :thumbup:

 
shadyridr said:
Jesus Christ, those poor parents must feel so guilty. My thoughts are with them.
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I went down the stairs with my 2 month old last year. Luckily I took all of the damage. It still haunts me though. What a disaster that was. Hold the railing everybody!

Come on Riley! Keep on improving. 

 
When things are really tough (as they have been the nearly 6 years since my daughter was diagnosed) and I don't see an end in sight I sometimes think of the Churchill quote "if you're going through hell, keep going". She just graduated from her typical 1st grade today (rare for kids with her deletion) and is doing very well in every area.

 
I'll just copy paste from my Facebook status with names deleted.

5 weeks ago today was the day our life changed forever and we found out Riley suffered a stroke. I remember driving home cursing God the whole time. Shortly thereafter we were told Riley had a poor prognosis for survival. Well since then she has been proving the doctors wrong and she will continue to do so. She had another mri this week and the doctor said the results don't look good but you can't go by the mri. She has a lot of damage on the left side of her brain but the doctor said children's brains are amazing and only time will tell. It was the first time I felt hope from the doctor. She's already doing stuff they didn't expect. I have faith with early intervention, her fighting spirit, and the support of her family she will meet all her challenges head on.

Ironically, what's keeping her in the hospital now isn't even the stroke at all. It's the open wound in her neck. Although it's closing and healing as expected it's going to take some time. The doctor today said the surgeon might close it on Monday, then they will see how it heals for a few days, and send her home. So it sounds like if everything works out as expected she will come home late next week. Also, they have her isolated now because of one positive culture but the doctors all think it was a contaminated sample because all her other tests keep coming back negative. She did have a slight fever today so hopefully that's nothing. Let's all cross our fingers no more setbacks and I'll keep everyone updated with all the ups and downs along the way because I know everyone is rooting for #RileyTheWarrior

I also want to mention how amazing Justin has been through these tough times. Weve been dumping him off on family and friends every weekend and he's never complained once, still killing it in school, and doing everything with a smile in his face. I feel so bad as I feel like we've neglected him for a month now. His 7th birthday is in less than three weeks and I hope he gets everything her wants because he really deserves it. I'm so proud to of him and know we raised a good boy that can handle more adversity in one month than most kids his age.

Finally, I also feel bad for my wife because she lost her mother and I don't think she really has had a chance to truly mourn her being gone because of all the worrying done for Riley.

 
Really happy for you guys and Riley. So sorry to hear about your MIL. I can't begin to imagine what you've been going through, shady.

 
http://imageshack.com/a/img924/3159/aG8A7F.jpg

They are closing the wound tomorrow. Also she got another eye exam and everything checked out great. As long as no setbacks I'm thinking she's home by end of the week. Today is the first day I won't be visiting her in the hospital but my wife did. I'll be back tomorrow. The streak ends for me at 41 days in a row.

 
shadyridr said:
http://imageshack.com/a/img924/3159/aG8A7F.jpg

They are closing the wound tomorrow. Also she got another eye exam and everything checked out great. As long as no setbacks I'm thinking she's home by end of the week. Today is the first day I won't be visiting her in the hospital but my wife did. I'll be back tomorrow. The streak ends for me at 41 days in a row.
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Holy crap for all she's been through she looks great!  Continued T&Ps to you and your beautiful family Shady.  Let's get this in the rear view asap and have you start being a complete family again.

 
cute kid! thanks for sharing that, shady- really looking forward to continued good news (and your daily source of inspiration by maintaining your strength through all of this). keep it up!

 
The fact that the Dr. is extending another 2 weeks blows but the light is at the end of the tunnel. You started this thing 5 1/2 weeks ago..stay strong for the finish.  :thumbup:

 
The bummer is this wound, which has nothing to do with the stroke, will have extended her stay in the NICU another month. AND Im still not convinced this wasnt a pressure sore.

 
shadyridr said:
The bummer is this wound, which has nothing to do with the stroke, will have extended her stay in the NICU another month. AND Im still not convinced this wasnt a pressure sore.
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They dont want to take any chances with your precious little girl making sure that wound heals up 100%.  Stay tough gb, sucks thats it's another setback, but she's in the best place for her health right now. 

 
The hard part of getting good news (release in a week) to then hearing about the delay certainly does make it hard on you and the family, I get that.  Whether at home or NICU, remember that every day is day of her getting stronger and better.  From where you started, this delay is a small road bump that doesn't overshadow the tremendous fight Riley and your family has already fought.  Try to stay focused on the positive and try not to let any current minor setbacks cloud the accomplishments that have occurred so far...

 
2 more weeks  :rant: ...

j/k

:clap:  awesome news with light at the end of the tunnel. She looks amazing compared to a few weeks ago. So much awfulness in the world, your story has touched so many folks here, myself included. 

 
I remember all too well the anger and frustration I felt when our NICU doctors said they needed to keep our daughter another week, then another, then another. It was maddening indeed, but looking back, I know it was the best thing for our daughter at the time. Hang in there, GB. Brighter days are coming. 

 
shadyridr said:
The bummer is this wound, which has nothing to do with the stroke, will have extended her stay in the NICU another month. AND Im still not convinced this wasnt a pressure sore.
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I doubt it's a pressure wound.  If she had one in that general area, it likely would have been on the back of her head, not her neck.  Or on her shoulder.  That's where the pressure falls when lying flat.

She's doing so much better now, I'm really excited for you all.

 
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Mrs. Rannous said:
I doubt it's a pressure wound.  If she had one in that general area, it likely would have been on the back of her head, not her neck.  Or on her shoulder.  That's where the pressure falls when lying flat.

She's doing so much better now, I'm really excited for you all.
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I know but she did have an EEG on for 3 days

 
That sucks shady and I'm sorry to hear that the stay is prolonged.

On the other hand, when you started this thread, a stay this long followed by a return home seemed almost impossible in the worst way imaginable. I know it's frustrating, but just remember how far she's come and how much of a miracle every day is.

How are her feedings going now?

 
GroveDiesel said:
That sucks shady and I'm sorry to hear that the stay is prolonged.

On the other hand, when you started this thread, a stay this long followed by a return home seemed almost impossible in the worst way imaginable. I know it's frustrating, but just remember how far she's come and how much of a miracle every day is.

How are her feedings going now?
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I know you are right. I'm just getting antsy. Want my daughter home.

Her feedings arent even an issue now. She eats like a champ.

 
Henry Ford said:
The wound wasn't there immediately?
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My FIL said he saw a red blotch there before she went to NICU but I dont know the color or what it looked like. I first saw it after the EEG. I know shame on me for not inspecting my newborn from head to toe after she was born :(

 
shadyridr said:
My FIL said he saw a red blotch there before she went to NICU but I dont know the color or what it looked like. I first saw it after the EEG. I know shame on me for not inspecting my newborn from head to toe after she was born :(
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I think you had plenty to deal with.

 
shady i am very glad to hear that 10 to 14 is out there as a possibility that gets my heart up in my throat brother you stay strong you got this 

 
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