Monday, October 30, 2006


On Friday, Max and I met with the DDD (Division of Developmental Disabilities) and worked more on our medical coupon waiver. They periodically check his progress, medications, medical status, etc. The coupon has not officially started, however we are in the final stages. This should help out tremendously with our medical expenses. Just the bills from the last few weeks has been staggering. All of his heart tests from a few weeks ago could pay my mortgage for the year...ok, slight exaggeration, but they are definitely expensive!

There is a nurse from the Olympia DDD office coming to meet with us on Wednesday. She will review our need for extended home nursing. I am a little nervous actually because to qualify for home nursing, your child must be VERY medically fragile. If the child's needs even fall slightly short of that, they expect the parents to handle the care and take shifts. One stays up at night while the other sleeps, etc. While I don't even think that level of care (gtube, oxygen dependent, medications, sleep apnea, heart issues) is manageable for a two parent household, it is nearly impossible with only one parent. (I totally understand the need for the government and insurance companies to be fiscally conservative, but I also refuse to put my son's health at risk just to save money.)

The local DDD office does not think this should be a problem, but it does have me worried. I don't know what we would do without our nursing. She thinks this is more of a formality in the final stages of this process...hopefully she is right. (Because this level of medical waiver is quite rare, there is some confusion in the process. Our social worker has not been able to get anyone the waiver since 2004. Yikes!)

We'll see. But for now, I must run. Gotta go wake Mighty Max up for his physical therapy appointment. He did sooooo great at playgroup this morning (I will try and post photos later) and I am hoping, hoping, hoping that he shows off for Jill (PT) too. :)


Kristen said...

Hi Amy,

This is Kristen from the Charge listserv. I check out Max's blog now and again as inspiration for my Felix (7 months). (BTW, I have a Max of my own he is 2 1/2 but is a Maximilian). Anyway, I read this and had to go through something similiar in Massachusetts. Before Felix had his trach he had O2, G-J tube, suctioning, etc. I was very nervous when the nurses came to my house, feeling that I was being evaluated - and of course, Felix slept peacefully the entire visit! What my nursing agency told me is to emphasize with them the breathing issues and the lack of sleep. The last thing the insurance company wants is to have to hospitalize a child (or worse) because they didn't provide adequate nursing. They also told me to describe your worst day - ultimately that is their liability.

Good luck,

wallybarron said...

Just think how hard this is for poorly educated people. We need to put more of our resources towards all of our children.

CrystalandEva said...

Good luck with it all!!

Crystal and Eva

elle said...

wow do they think of single parent house holds hope so