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Posted

Positive thoughts and prayers going out to her and your family Cotton.

I was in a somewhat similar position nearly thirty years ago, though it did not involve a long distance stay away from home.

You might want to contact the hospital and see if they have anything set up with a local organization.

Ronald McDonald houses are just such an organization. They house the parents of critically ill children in facilities close by to many hospitals.

It's worth asking about.

 

Good luck and God bless.

Posted

I just wanted to say how deeply moved my family and myself have been from all of the well wishes and all of the great advice being given from our extended family here at TBD. I apologize for not getting back sooner with any updates, but it has been a very hectic week. Just today, we were able to touch base with the Dr. at Roosevelt for the first time since they had a chance to review the MRI's from our visit to U of M last week. He told us that there were no signs of hydrocephalus at this point (fluid on the brain) which is a good thing, but there is definitely what he described as "stress" on her brain from the condition. He said it's very difficult to predict what the severity of this damage would be when she is born, however. It could get better or worse. However, his opinion was that he sees no reason not to move forward and give her every chance we can. He wants my wife to be admitted to the hospital for the next week to week and a half to receive heart medication via IV which will supposedly help ease the burden on our baby's heart. He had spoken with the doctors at U of M and had believed we had their cooperation on this, however, late this afternoon when we called to set this up, we were told that they don't support this course of treatment and are now refusing to work with the team in NY on this. This means we will likely have to travel to NYC immediately and spend perhaps an extra month there. Originally they had planned on us getting there when my wife was around 35 weeks or so, as they could monitor the condition and work with U of M for the care we needed in the mean time. Needless to say, that wasn't what we were wanting to hear, but all the same we are elated that the team at Roosevelt is willing to take this case on and give our baby girl every chance they can, which is much better than the prognosis we received originally at U of M last week.

 

Thank you again... I can't tell you how uplifting it has been to get such an outpouring of support from this community. Not that I would expect anything less when we need to circle the wagons for one of our own... but again a heartfelt thank you from our family to all of you guys. Hopefully we will have more positive news to report in the near future. Until then, God Bless... and GO BILLS

Posted

The wife and I are sending our prayers.

Is a fund set up that any of us could donate to?

 

Thank you so much for the support. Again, I can't overstate how much it means to us.

 

As far as a fund for donation... we haven't set up anything at this point, but would be very humbled and appreciative if anyone felt like they wanted to donate. What would be the best way to go about setting something like this up?

Posted

https://personal.paypal.com/us/cgi-bin/marketingweb?cmd=_render-content&content_ID=marketing_us/fundraise

 

Cotton--One option is if you have a pay pal account you can accept donations. The link above shows how. Paypal keeps about 2.9% + 30 cents per transaction. That's the fee. Its likely safer than sending you checks, etc.

 

Prayers to you, your wife and family. Prayers for that little girl.

 

Seriously Cotton, do this. I think you'll see more than a few dollars coming in from TBD.

 

Keeping your family in my thoughts, buddy.

Posted

Seriously Cotton, do this. I think you'll see more than a few dollars coming in from TBD.

 

Keeping your family in my thoughts, buddy.

This. All of it.

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