Wednesday, May 25, 2011

Doctors and Nurses and Therapists... Oh My!

I've got a nice big empty file box that looks like this:

But it won't stay empty for long.

No sir-ee, Bob.

I am in the process of compiling every single medical record from every single doctor or specialist Lily has seen in her almost five years of life.

It's quite an impressive list.

Lily has been seen by two pediatricians, a cardiologist, a heart surgeon, a gastroenterologist, a hematologist, a urologist, a dermatologist, an allergist, an opthamologist, an infectious disease doctor, a regular pediatric surgeon, two nutritionists, and an ear specialist.

I will be collecting every record from every hospital stay we endured, prior to heart surgery.  That's about 5 or 6 visits, some lasting as long as a week.

I will include her Texas Children's Hospital medical chart documenting our month long stay there for open heart surgery.

I will also add every therapist Lily has worked with, along with every evaluation that's ever been done on her.

This is a list about twenty people long.

In order to obtain all this information, I have to fill out a medical record request form for each and every doctor.

Thankfully, I already have copies of all evaluations that have been done along the way.

Once all this information is in my hands, I will then set about putting everything in chronological order, from Lily's very first day of life until the present.

I will then write my version of Lily's medical history, in my own words.  A sort of antecdotal medical diary from the perspective of a parent, if you will.

Once I have all of this information gathered and organized, I will take the entire enormous stack to Kinko's and have them make several copies of it.

Then I will fill my nice big empty file box with the copies.

From that point on, I will just continue to add any medical, biomedical, or therapeutic records to the box as we receive them.

Sure, it will be nice to be super organized and never have to undertake something like this again.

But that's not the real reason I'm doing this.

You see, one of those copies will go to a doctor in California.

A very special doctor that we are hoping will be able to help our sweet Lily Bird.

A doctor who is doing some amazing work on children with autism by focusing on the very heart of the matter - the brain.

We are excited about the prospect of trying something new.  Treatment that appears to focus on the issue and not simply the symptoms.

So if you see me out and about in the next few days, I'll easy to recognize.

Just look for the lady with bloodshot eyes, hunched over shoulders, and her right hand in a permanent curved "pen holding" position, leaving a trail of paper behind her.....

and booking a massage appointment for next week.


  1. Praying for you and that doctor. You can do it!

  2. We pray for The Rush family everyday, Its nice reading your blog knowing what to pray for. Praying God will open doors for you.

  3. Wow! This sounds like a new adventure for you and Lily...can't wait to take the ride with you :)


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