email I sent to the CF email list

Catching up on email after a day off of work (wow, lots of digests) I saw all the posts about "Alex: the Life of a Child".

I never saw this movie till it was on TV a couple of years ago; I taped it at that time and still have the tape. However, when I was about 12 I read the book because it sounded interesting and I was in one of those pre-teen "morbid" stages where I was reading books about people dying. Little did I know that CF and I would become close acquaintances later on in life!

I have to say that I agree that things are VERY different than they were when Alex DeFord lived and died. And thank goodness. I have to disagree with Laura who said that the life expectancy has not changed since her son Graham was born. I know that can't possibly be true because the life expectancy has increased by 2 years just in the four years that my Ricky has been alive.

But that's not really what I'm writing about.

When Ricky was first diagnosed, he was a very sick premie in the NICU having already had one surgery and scores of tests. I was devastated. I cried my eyes out whenever anyone asked me how my baby was doing. I read about CF on CF-Web and in the antiquated books at the library (since I started working there in '96 you can bet that they've updated their collection) and all I saw were all these bad things. Of course I was remembering "Alex" and the other book about CF that I'd read, Belva Plain's "Daybreak" where the CF patients died in their childhood. I was totally devastated. My husband was in the classic "denial" mode.

Gradually we both came to see that there was, and is, much promise in CF research and that every patient is different. From that fear of the unknown that we grew to know our son and what his baseline was. We learned while he was still in the hospital to give him his meds, do his treatments, and treat him like a regular kid. Eventually he came home and we started going to support groups and conferences, and I became active on Cystic-L. We were and are a regular family with a regular kid who just happens to have CF (and now he just happens to have a healthy little brother).

I have to believe that there is hope, that we are close to a cure or a treatment for cystic fibrosis. How can I not believe? I admit I am not optimistic all the time. Sometimes (like when we waited for 4 hours yesterday for Ricky to have his sinus endoscopy) it just seems impossible. But we persevere and we take it day to day and that's what keeps us sane.

I hope this made sense. Sometimes I just have to say what I have to say.

Update

This week we got Ricky's pre-K "IEP". He has shown progress in his fine motor skills and major progress in his gross motor skills. He has also started talking up a storm! The teacher loves the little chats they have at playtime. Finally, the IEP stated that he is probably not emotionally ready for kindergarten. They're pretty sure that, given his attention span, he'd have a hard time staying interested in group activities. He will be 5 on November 26 so it was touchy anyway, but that pretty much settles it.

Ricky is going to be starting up speech therapy again most likely, probably through the local school district. The pediatrician had so much trouble understanding him at his 4 yo appointment that she recommended he start (he had it from 2 to 3 and then we were told he didn't need it anymore, which I knew was BS). I want to get him assessed and enrolled (the papers are the same ones they use for kindergarten, so I guess it's a little "practice") before the school year is out. It's going to be difficult to do but I'd like to be ready to start in fresh for speech therapy in the fall.

At the 4 year old appointment the pediatrician noticed that he has a lazy eye... Something the ENT doc noticed previously and the pulmonologist noticed later on. No one had EVER noticed it before so it's got to be a new thing. Something else to worry about! So we are going to get that taken care of, too. He will see an ompthamologist in May.

Ricky was hospitalized for 11 days for a CF tuneup in February and had sinus surgery in March. Since his sinus surgery, his whole attitude has changed. While we still have what I call "whiney moments", he seems so much happier, content, and BOY DOES HE HAVE AN APPETITE! It's great! What a change I see in him, those sinuses were probably giving him so much pain and discomfort and now he is doing so much better. Any doubts I had about the surgery are SO far gone!