Thank you to Greg and the NFFC Family

Coyote Streakers
Posts: 168
Joined: Fri May 14, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by Coyote Streakers » Mon Aug 31, 2015 2:58 pm

Good luck with everything my prayers are with you and your family.

HOF
Posts: 90
Joined: Sun Aug 22, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by HOF » Sun Dec 13, 2015 5:09 pm

Just wanted to provide an update on my daughter. Our most recent stay in Peoria resulted in her MPAP score getting down to 37...this is great news as 45 has always been the magic number for her to get out of the heart failure in the short term.

Thanks again to everyone for their support.....its still appreciated.

hammer
Posts: 542
Joined: Sat Apr 24, 2004 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by hammer » Mon Dec 14, 2015 11:30 am

Great news, HOF. Very happy to hear she's doing better!

Coyote Streakers
Posts: 168
Joined: Fri May 14, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by Coyote Streakers » Mon Dec 14, 2015 3:41 pm

Great news!

BillyWaz
Posts: 10913
Joined: Mon Jul 05, 2004 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by BillyWaz » Wed Dec 16, 2015 7:08 am

Prayers and best wishes continued with you and your family, HOF!

HOF
Posts: 90
Joined: Sun Aug 22, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by HOF » Fri Dec 18, 2015 12:20 pm

Posted this over on the NFBC forums but it holds the same weight here...

Thanks guys....we are still seeing people from the NFBC and NFFC donating.....simply amazing. Appreciated beyond what I can express in a forum post.

Its a lifelong battle for my 7 year old autistic daughter but I swear she is putting me and the wife to shame with how tough she is. We are hot messes and she continues to amaze.....

Thank you all again and I hope everyone has a great and safe holiday season this year.

HOF
Posts: 90
Joined: Sun Aug 22, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by HOF » Wed Dec 23, 2015 6:18 am

Just another thank you to all those that have donated recently.....huge props and my family is more than appreciative of this.

With the deductible for Blue Cross starting over in January this will go a long way in helping offset that.

Thanks again to Greg,Tom and the whole NFFC/NFBC family.

Make a Wish of Illinois has also called (after hearing from Dr. Bash in Peoria) and we hope to do something for my daughter in 2016 before she is unable to travel.

Thanks again.....I cannot say that enough.

HOF
Posts: 90
Joined: Sun Aug 22, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by HOF » Fri Mar 04, 2016 10:30 am

Just a quick update from the latest visit to the childrens hospital in Peoria...

The daughters MPAP number remains at 37.. (25 is normal..and considered at the high end).....which is a good and bad thing. Good that it did not go up....bad that it might mean her body is adjusting to the medicine.

We will go back in six months to get another reading and its hopeful that after a total of nine months on this current medicine that her number will continue to go down and not flatline.

Basically what that number means is her heart is working about 1.5 times harder than a normal heart....which when we started was over 3X (81 MPAP score)......so we are lucky when so many other parents arent.

We go back next month to Peoria for a HD CT scan of her lungs as they continue to look for the root cause of the PH.

Just wanted to say thanks again to the whole NFBC/NFFC family....and obviously good luck to everyone in their upcoming drafts!!

HOF
Posts: 90
Joined: Sun Aug 22, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by HOF » Mon Jul 25, 2016 2:50 pm

Just wanted to give the NFBC/NFFC family a quick update on my daughter as we hit the one year mark of her diagnosis of her pulmonary hypertension.

The summer has been brutal but we have been keeping her indoors and so far so good. We go back in September for her next big check up on her heart in Peoria.

So just wanted to say thanks again to all the prior and continued support.

Means alot!

Thanks again.

Chris Olesen

HOF
Posts: 90
Joined: Sun Aug 22, 2010 6:00 pm

Re: Thank you to Greg and the NFFC Family

Post by HOF » Thu Sep 08, 2016 9:23 am

Just had our most recent check up and we got some great news and a little bad news...but overall it was a great visit.

The daughters pressure on her heart dropped from 37 to 31 (started at 81 and 25 is normal). This means the meds are working and a heart transplant is not in the immediate future for her.

The bad news we did get was that she continues to lose weight but now that her pressure has gotten into the low 30's we are hoping she starts to fill out a little bit...as if she continues to lose weigh it will only make future potential surgeries problematic.

But overall it was a great day for my daughter and our family.

Thanks again to the NFFC/NFBC family and for Greg and Tom for allowing me to share my story.

Means alot....and good luck to everyone as baseball wraps up and football begins!

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