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my daughter was diagnosed with rasmussens encephalitis

Demondosage said:
this update made my day, although most of us do not know each other, this has bothered me and I'm sure several others lately. You're a strong dude, a bench press don't mean shit for strength when you see this sort of shit. Very happy for you
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I’ve shed some tears not gonna lie. Being a father changes the way you look at life. Nothing matters but the kids. This was the best damn news I’ve had in a long ass time.
 
@kap73 glad she was in good hands with the doctors now she’s in great hands with you and the wife. My family and I wish you all the best in her recovery. I know a tough sob man like you won’t need any help but you know how to get a hold of a few of us here if you ever do. Just remember a man will need a helping hand once in a while. It’s a helping hand up not a hand out. Keep us posted here when you can.

thanks @Millard Baker for moving this.
 
little girl is doing great, she is responsive and speaking fine. her left side is paralysed but we have seen a glimpse of toe movement this is great news so early into recovery/rehab

swelling is getting bad and will get worse before it gets better... our girl may be missing half her brain but her personality is still there and thats our 1st major win post surgery

thanks everyone for ur positive vibes and prayers

for the first time in months our baby girl hasn't had a seizure and she even told us this aswell.. i cried my eyes out when she said 'dad i havnt had a seizure today' she said all that without opening her eyes
 
kap73 said:
little girl is doing great, she is responsive and speaking fine. her left side is paralysed but we have seen a glimpse of toe movement this is great news so early into recovery/rehab

swelling is getting bad and will get worse before it gets better... our girl may be missing half her brain but her personality is still there and thats our 1st major win post surgery

thanks everyone for ur positive vibes and prayers

for the first time in months our baby girl hasn't had a seizure and she even told us this aswell.. i cried my eyes out when she said 'dad i havnt had a seizure today' she said all that without opening her eyes
Click to expand...
Man why does dirt always get in my eyes when reading this thread making them water? Glad her spirits are up my brother! Thanks for keeping us posted.
 
kap73 said:
little girl is doing great, she is responsive and speaking fine. her left side is paralysed but we have seen a glimpse of toe movement this is great news so early into recovery/rehab

swelling is getting bad and will get worse before it gets better... our girl may be missing half her brain but her personality is still there and thats our 1st major win post surgery

thanks everyone for ur positive vibes and prayers

for the first time in months our baby girl hasn't had a seizure and she even told us this aswell.. i cried my eyes out when she said 'dad i havnt had a seizure today' she said all that without opening her eyes
Click to expand...
Man I am happy to read this! That's such good news, you guys got a ton of support and prayers coming your way.
 
Mighty-mouse said:
I won’t pretend I know how you are feeling @kap73.... but I do want to say thanks for keeping us updated!! Seems like ever since I seen this post I always check it first. Continue sending prayers and love bro!
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thanks for the prayers mate, i respect that you don't understand how i feel and i dont even knw how to describe the last few months.. like my mates that tell me they dont knw what to say to me. i say to be honest i dont even knw what words i want to hear so dont feel bad
 
so day 7 post operation and wow... kids are so resilient.. swelling has subsided now and our girl is just shooting for the stars..

we was so scared of losing her personality when they disconnected half her brain but i can tell u now she is every bit the isla we knew before the operation

the doctors are so amazed by her progress she is 4 or 5 days ahead of what they expected. already hsd 3 physiotherapy sessions and is speaking fluently, has no eating restrictions. she is starting to move her left leg. her left arm is still paralysed but that comes back last apparently. her face has paralysis still. but isla is SEIZURE FREE

first time she has been seizure free for this many days since november 2019
 
kap73 said:
so day 7 post operation and wow... kids are so resilient.. swelling has subsided now and our girl is just shooting for the stars..

we was so scared of losing her personality when they disconnected half her brain but i can tell u now she is every bit the isla we knew before the operation

the doctors are so amazed by her progress she is 4 or 5 days ahead of what they expected. already hsd 3 physiotherapy sessions and is speaking fluently, has no eating restrictions. she is starting to move her left leg. her left arm is still paralysed but that comes back last apparently. her face has paralysis still. but isla is SEIZURE FREE

first time she has been seizure free for this many days since november 2019
Click to expand...
Words can’t describe the happiness I feel for you and yours. Carry on my friend. Thanks for the update.
 
kap73 said:
so day 7 post operation and wow... kids are so resilient.. swelling has subsided now and our girl is just shooting for the stars..

we was so scared of losing her personality when they disconnected half her brain but i can tell u now she is every bit the isla we knew before the operation

the doctors are so amazed by her progress she is 4 or 5 days ahead of what they expected. already hsd 3 physiotherapy sessions and is speaking fluently, has no eating restrictions. she is starting to move her left leg. her left arm is still paralysed but that comes back last apparently. her face has paralysis still. but isla is SEIZURE FREE

first time she has been seizure free for this many days since november 2019
Click to expand...

This is amazing.

Shes obviously a tough and awesome kid.
And shes got a hell of a Dad.

She will be playing in the little house you built in no time brother.

Fuck, I'm actually really happy right now
Thank god
 
Silentlemon1011 said:
This is amazing.

Shes obviously a tough and awesome kid.
And shes got a hell of a Dad.

She will be playing in the little house you built in no time brother.

Fuck, I'm actually really happy right now
Thank god
Click to expand...

im glad it made ur day mate, i feel like she has been reborn... the first time i held her after the operation felt like the day she was born and the nurses handed her to and i froze because i was so scared to hold her wrong and hurt her... it was deja vu
 
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