I've kept a lot of little things like so many parent's do. This morning though I was cleaning out a filing cabinet trying to be good, get rid of some stuff we didn't need any more and trying to make room for other things that I'd been working on organizing. I opened a file from Jan 2007, just before I was going to go to court because I was appealing Nathan's denial from Arizona Long Term Care. (part of disability) The hearing was going to be in Phoenix, and all of his doctor's, therapists and people who had been involved in any part of his care had written a letter confirming the dire need we had to get financial assistance to help with the medical bills and co-pays. So I ran across this letter than Dr. O'Hagan had written from Phoenix Children's Hospital that I had forgotten all about. I started reading it and this flood just came over me of sadness and memories that I can hardly describe.
This is the first paragraph of his letter to the judge:
" To Whom It May Concern:
Nathaniel Contreras is a 2 year old male child who has been diagnosed with cystic fibrosis. He has been treated by the CF Center at Phoenix Children's Hospital since January 2006. The genetic testing that was completed to identify specific CF genes revealed that Nathan has a more rare and severe form of CF. Nathaniel's symptoms include multiple pulmonary infections, some of which have required frequent hospitalizations, pancreatic insufficiency, gastroesophageal reflux disease, ongoing dysphagia with oral aversion, history of recurrent emesis and retching, history of failure to thrive and of clostridium difficile colitis. Due to his oral aversion, Nathaniel receives approximately 99% of his nutritional needs through a gastrostomy tube. Nathaniel's precarious health will have to be closely followed by the CF Clinic for early intervention for pulmonary exacerbations. Cystic Fibrosis is a genetic disease characterized by progressive lung disease and fat malabsorbtion. "
The letter went on, but I just wanted to share that first part. It seriously brought back this flood of memories, and how even though it's always "there" in my mind about his cf~ it just feels different when you read phrases we've heard so much...that he has 'rare and severe cf' and you know, we still lost that appeal
The judge said Nathan should be able to receive it, it was clear he needed it and would benefit from it but because there wasn't a scale at that time that went under the age of 6 yrs old he could not be on it. (if you didn't already have disability/SSI, or were not blind, having seizures & this list of other requirements.) So it's wild that I found this right now because on the 26th of Dec. I have a 9:30 phone interview with AZ Long Term Care again, since I had just re-applied a few weeks ago. Now that he's had disability for a year now. Goodness sakes. Strange full circle of things huh?
I am still trying to work on getting that story of Nathan & Bella seen, but it seems so impossible at this point that very many more people will see it, or especially share it like I'd hoped. I think it was a lot of wishful thinking.