Just wanted to provide a quick few updates on Raine....
We literally just returned from a one week stay at the amazing Give Kids the World Village in Kissimmee Florida as part of the granting of Raine's Disney Make A Wish. If you do not want to donate to Raine's fund please send them some donations. Just an amazing place.
A huge thank you to the people of Make a Wish Illinois for setting the Wish up and Raine had an amazing time and as a family we have memories that will last a lifetime.
We head back to Peoria in January to test for cystic fibrosis. Raine is coming off an extended bout with pneumonia and her pulmonologist wants to see if she tests positive for CF as that could be the cause of her PH.
Thank you again to everyone that continues to lend support to Raine's PHight.
Thank you to Greg and the NFFC Family
Re: Thank you to Greg and the NFFC Family
Been a crazy few months but just wanted to provide an update....
Raine just turned 9 here in May and her numbers have stabilized to where she is in the low 30's which is amazing. Right now we are waiting to head back for more tests in September. We were going every month but now its set up for every six months.
She did test negative for CF, so we still are unsure of what is causing the PH.
Apologies for lack of updates the last several months, but we honestly have just been enjoying the coolish summer we have had here in the chicagoland area.
The big fight right now is with the obama care repeal as PH falls under pre existing condition and depending on how that plays out our yearly 10k a year out of pocket cost could go up by quite a bit.
But thanks again to all the NFFC/NFBC guys that donated last year and it was weird not playing in any contests this year for the first time in years.
Good luck to everyone wrapping up baseball and prepping for football.
Raine just turned 9 here in May and her numbers have stabilized to where she is in the low 30's which is amazing. Right now we are waiting to head back for more tests in September. We were going every month but now its set up for every six months.
She did test negative for CF, so we still are unsure of what is causing the PH.
Apologies for lack of updates the last several months, but we honestly have just been enjoying the coolish summer we have had here in the chicagoland area.
The big fight right now is with the obama care repeal as PH falls under pre existing condition and depending on how that plays out our yearly 10k a year out of pocket cost could go up by quite a bit.
But thanks again to all the NFFC/NFBC guys that donated last year and it was weird not playing in any contests this year for the first time in years.
Good luck to everyone wrapping up baseball and prepping for football.