Tuesday, June 23, 2009

Well, it is official. Jonah received his Cerebral Palsy diagnosis from Dr. Ho today.

Never mind that I had to be the one to push for this so we could move forward in getting Jonah home equipment through the school district. Never mind that I had to call the doctor's office and ask for an appointment so that the doctor could update his patient file and make the official diagnosis. Crazy!!!

What makes it worse is that Dr. Ho came in, checked out the boys, said they looked good and were ok for shots then turned around to the nurse and muttered something under his breath and all I heard was "CP." The nurse said, "she may need a letter for that." At which point I had to intervene and say, "Yes, I need to talk to whomever will be dealing with drafting a letter because we are trying to get Jonah equipment through the school." Then Dr. Ho basically excused himself and left the room!!! Without ONE WORD! WHAT? How do you hand out such a serious diagnosis and not spend time with the parents talking about what is going on, the future, options, etc.?

I am so furious that once the dust settles with this letter I am switching to Dr. Pardo (his partner). Yes, she is not board certified in neonatology BUT she always spends time with us, listening to our worries, etc. She has excellent experience (most of which in Orange County) and is very intelligent. Yes, she is opinionated so some moms do not like that but I like that she is smart and quick to suggest options. So I think once things have settled we will be switching.


I can't wait until we move to an area that has better pediatric doctors AND a pediatric hospital!!! Imagine that!

Today was busy. This morning Jonah had therapy, we came home to weed a bit while it was still cool and then played with the boys in their kiddie pool. After, we got Sonic treats for lunch. Freddie from the Regional Center met with us to sign the boys bi-annual paperwork for their early start programs and then we were off to Dr. Ho's. The day went quickly which was really nice.

Tomorrow we are on the road at 8:00 AM. We have Dr. Kelly at 10:00 AM and then we go to the hospital to get Jonah's light box. On the way home we drop by Christi's home (Blind Babies) to pick up attachments for the light box, a loaner Wingbo and a nice, new seat for Jonah. Good thing we are taking our Sequoia!! We will need the room.

So that is where we are at. It does feel strange to officially have the diagnosis but in the same breath we have been preparing ourselves for months for this day. It does not mean that we give up on Jonah or his potential. He has SO much potential and we will work with him to help him achieve it!!!

NAPA called today to say that Anthem Blue Cross does not currently cover their Neurosuit program (of course, we knew this). They did mention a couple of grant Web sites that they said I should watch to see if any grants become available in Kern County. So we are back to considering January 2010.

That is the latest...hope everyone is well and healthy!

1 comment:

Jill said...

Thanks for sharing your experiences. Whatever happened to bed side manner?