Let me share a heartwarming story with you all

[boogerlovers]

wow i am so sorry for your situation, i dont even know if being sorry is the correct feeling, im glad she is still with you, i have a daughter and i would do anything for her, ill give a donation before the end of the week if you are still accepting them...happy holidays, and i love your pictures, i learned really quick that you can never have too many of your baby...

[KAT0]

Mellow babies are awesome. She's freakin' adorable! The smiles are priceless...

[fromxtor]

Thanks guys, it's tough from every aspect. For example the part of her brain that controls her body temp is damaged so sometimes(like tonight) it seems like she has a fever or is sick when in fact its just an irregularly high body temp(thank God). Going from two active duty paychecks to one is hard also, but w/ you all helping out and me about to get a second job we may make it.

[KAT0]

You're a true inspiration.

[240boy90]

God bless ur family .........

[Fibercus]

She looks so comfortable in your arms.

god bless

[fromxtor]

[95Blue240sx]

She is so CUTE! Wish your family all the best.

[shmiddy]

best wishes, sending money today

[holemilk00]

Those of us that live in this area should all try to get together and do some kind of fund raiser, it would be a way for those of us that are broke to still help.

[fromxtor]

Shane thanks for the awesome ideas, we have been thinking about a benefit concert but would need someone to either find the band or fund the location. We are thinking about inviting some local bands.

[ESmorz]

Originally Posted by fromxtor

Shane thanks for the awesome ideas, we have been thinking about a benefit concert but would need someone to either find the band or fund the location. We are thinking about inviting some local bands.

If my band gets booked within the next month... All the money will go to you.

I don't know you or anything but I can only imagine, best wishes.

[wafflez66]

Good luck, I hope everything is going better now...Glad I could help...

[Rnz520]

As broke as I am it would be wrong to not help. Admire you and your wife enormously for this.

[Mi Beardo es Loco]

There have been some really great things going on in the world with cp cures. Especially with some neuro acupuncture treatments. I'm not sure if there's fda approved but that's always an option.

She's so adorable! Have any new pics of her?

How severe did the doctors say she was or is it kind of a wait and see thing?

Here's a link to a cp center on the east coast.
www.cpabilitycenter.org

[fromxtor]

New pics of easter and her 1st birthday (april 13):
















Nicole and I are very thankful she lived to be a year old and pray she has many more years ahead of her.

[Dirty Habit]

Awesome!

Baller flip flops by the way.

[Mi Beardo es Loco]

she looks so adorable! i'm sure she had a blast!!!

[fromxtor]

Thanks for looking guys, I'm going to try and upload more pics tonight.

[AznDrftr.]

she's adorable. sigh....glad shes doing better.

[mRclARK1]

Wow, a year old already. Hope she keeps seeing nothing but improvements ahead.

I'd wear those flip flops.

[charlie321]

glad to see that she is doing well! a year? thats great, i hope everything continues to be good. family members only come once, they deserve the best!

[DALAZ_68]

happy to see shes well taken care off...and u and ur wifey...much =props to u aswell...but on the real shes the trooper...god bless on the real

[fromxtor]

UPDATES:

GOOD NEWS:
We spoke to our case manager at our insurance company, and found out we are way under our cap for nursing care. So they are going to be upping it from 40 hours a week to 70, which means I wont have to play nurse and stay up all night friday and saturday nights. And that Nicole and I will be able to spend more time togather, and actually get to go out to eat which we have only done once since july.

A member of both Zilvia and carolinanissans is looking to have a benefit track day for Natalie, which I hope has a good turn out and helps all of us to get to know each other better.

BAD NEWS:
Natalie continues to have respiratory issues, and struggles to keep her blood oxygen saturation at a healthy level. Recent blood tests have shown her carbon dioxide level which should be around 24 is in the mid to high 30s, and even though her body has been compensating our pulmonologist had "the talk" w/ us yesterday.

Basically it's come down to whether we want to give her a trachestomy and admit her to the hospital for basically the remainder of her life, on a ventilator. Or just keep her as comfortable as possible at home and do the best we can to make sure however long she has left is w/o pain and suffering.

For those who didn't catch that, we can either make sure she lives as long as possble by medical intervention, drugs, constant blood tests x-rays etc. Or just spend as much time as we can w/ her making sure she has a comfortable happy(as much as it can be) life until she passes away.

[onehundredoctane]

^ I may have posted this on CN, but everytime I read this thread I think the same thought over and over.

Everyday at work when I take my round through NICU I see most of the same little faces I saw the day before, I never know each ones story, but knowing what all you've gone through makes it that more real everytime. I myself have never had a child, but I can only imagine what loving a child that's your own is like. A love like that isn't meant to be taken away as soon as there is potential for here in your case.

I love you guys, and hope and pray that this is as easy on your nerves as possible, even though it's probbly far from possible.

I just remembered that you mentioned to me on the phone a while back that you guys might be re-locating to Georgia, is that still going to happen?

[2ilvia]

personally i would spend as much time with her as possible, if she leaves this life, she'll be waiting for you in the next...
otherwise its just going to be painful for you and her if she lives in a hospital the rest of her life

[fromxtor]

Matt, 2ilvia thanks for your kind comments, we do cherish everyday we spend w/ her. And to think we weren't sure she was even going to make it her first week alive. We are very thankful to God she is still w/ us and hope she stays w/ us as long as she can hang in there.

Matt give me a call, billeting is super cheap here or you can stay in the spare room and you are welcome to come and wrench, cook out etc anytime. We will be moving to GA in late Oct early Nov.

[gripology]

I can't send much, but as soon as the funds are confirmed I'll send it your way. I hope it can help even a little. God bless you and your little girl.

[Maxstyle]

Only a bit of $, but hope it helps....

[Sileighty_DRFT89]

your daughter is so adorable. you guys will be in my prayers daily. I wish you guys the best of luck, and come end of the week I'll be sending a little present your way. God bless.