kap73
New Member
i just cant sleep upstairs atm, to many what if's
thanks mate and i will never lose hope i promise
MESO-Rx
Anabolic Steroids
my daughter was diagnosed with rasmussens encephalitis
- Thread starter kap73
- Start date
i just cant sleep upstairs atm, to many what if's
thanks mate and i will never lose hope i promise
This is a perfect example of why people need to not exploit the bad they experience and bask in the good. Life is too short and fragile, even if we can hit 100+ years old as a species. Holding onto the hate and pain isn't worth it. We've had thread after thread inducing anger regarding covid and politics. This thread makes those issues seem so small to me, but it brings so much more hope and positivity. It's funny how we perceive things.
kap73
New Member
i couldnt agree more, ive had a good hard look at myself during this time aswell dont worry.. even the missus has stopped bringing up small issues as now she realised doin the groceries or having a headache is irrelevant to a real problem.. and even in this heart breaking situation i still think off people who never had a chance to take their kids home from hospital etc. we have had 4 1/2 wonderful years with this beautiful girl of ours, and we plan to continue to give her the best life post surgery
kap73
New Member
its the same as the people sooking about having to stay home on lockdown.. those same people were sooking 6months ago that they had to get up and go to work every monday.
Rot-Iron66
Member
I am so sorry to read this, tearing up a bit here (I have 2 girls in their mid-20's, but still my babies), so unfair... You are in my thoughts.
Going through hardship and adversity is an interesting thing. While we all love our children, sometimes hardship brings about an enhanced love, a deeper appreciation, a greater selflessness than is psychologically possible for those who have not been forced into such circumstances. Focus on the positives. The powerful emotions can be very sustaining during difficult times.
kap73
New Member
thanks mate, your girls will always be your little princess's. i bet you are their hero aswell
kap73
New Member
100% correct and to be honest since we've found out the full extent to what our daughter is dealing ive found a new lease on life... i have 10 times the more reason to have my shit together
my own dad told me that ive become his hero in this time. he said son your 35 and i couldnt imagine making the decision to remove half of your brain, and your making this decision for your 4 1//2 year old daughter. and during all this your still providing food and a home, u havnt once sat there and said why me or why her..
my fiance has post natal depression aswell from when we had our 11month old
It's ok and normal if you do have those moments occasionally. You know what they say:
“In case of a loss of cabin pressure, oxygen masks above your seat will deploy, please place the mask first and then assist your child or other passengers”
kap73
New Member
that was great analogy, thanks
for putting it that way for me
and i wont lie i have asked why... just not out loud
Oldschool
New Member
What is your daughters name? Nickname? My daughters and son have been praying for your daughter every night before bed. My kids asked”How is God going to know who we are praying for? Then they asked why I was crying.
kap73
New Member
What is your daughters name? Nickname? My daughters and son have been praying for your daughter every night before bed. My kids asked”How is God going to know who we are praying for? Then they asked why I was crying.
ur kids sound beautiful, and ur a good man thanks for your thoughts
her name is Isla Grace
Mighty-mouse
Member
There is nothing worse than seeing a kid go through pain and trauma. I pray that your little one will recover and I pray for guidance for you and your family.
I don’t know the pain and emotion you are going through but pray that your baby is in gods hands through the process and pray for the doctors as well.
Heartfelt song too bud
I don’t know the pain and emotion you are going through but pray that your baby is in gods hands through the process and pray for the doctors as well.
Heartfelt song too bud
kap73
New Member
thanks mate, im glad u said that aswell. ive had people try and tell me what they would do if it was their kid etc.. my dad said to me dont let anybody tell you what they would do because nobody understands what your goin through other than families affected by this disease.. and from what we understand there has only been 12 or so cases in australia
he does have some cute kids. Anytime a little fucker is rocking pull on boots you gotta smile. Aside from some running pics of his oldest, they're always wearing the damn boots! South Texas for you!
Oldschool
New Member
Thanks for the kind words amigo. They are my world for sure.
kap73
New Member
hi everyone
update on our beautiful little girl, the disease has really ramped up this month... its been a long month. she went from 87 seizures in july to 403 in august so far... thats a quadruple in seizures... some nights she has had 21 seizures in bed.. i havnt slept
for 6 1/2 weeks... lucky for our girl the
doctors have seen the urgency for this surgery and she has been made number one priority in australia... we have just landed
in melbourne today and her surgery is booked for 830am 3rd september... the anxiety and fear is at its highest right now but i must admit after seeing her have +400 seizures in 31 days i knw this is the right choice
fingers crossed for a successful operation with no complications
i will keep u guys updated
my girl is a soldier and she has been my motivation through all of this but i can see is getting more and more fatigued and we
need to intervene now and give her the best life possible
kap
update on our beautiful little girl, the disease has really ramped up this month... its been a long month. she went from 87 seizures in july to 403 in august so far... thats a quadruple in seizures... some nights she has had 21 seizures in bed.. i havnt slept
for 6 1/2 weeks... lucky for our girl the
doctors have seen the urgency for this surgery and she has been made number one priority in australia... we have just landed
in melbourne today and her surgery is booked for 830am 3rd september... the anxiety and fear is at its highest right now but i must admit after seeing her have +400 seizures in 31 days i knw this is the right choice
fingers crossed for a successful operation with no complications
i will keep u guys updated
my girl is a soldier and she has been my motivation through all of this but i can see is getting more and more fatigued and we
need to intervene now and give her the best life possible
kap
♥ Isla Grace ♥
Human_backhoe
New Member
Jesus Christ. I can't even imagine what your family is going through! We will be thinking of you all and praying. Medical technology is amazing now compared to even 5 years ago! I'm sure she will have the best outcome possible!
You are a great father, just keep doing what you have been doing and it has no choice but to turn out for your family!
You are a great father, just keep doing what you have been doing and it has no choice but to turn out for your family!
Mighty-mouse
Member
This hurts my heart. I have thick skin but I get all emotional when a kids involved. I pray for you and your family to have the best outcome possible and for you the strength needed to continue watching after your daughter like u have been.
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