Making a Medical Binder

Soon after Haddie's diagnosis I realized how important it was to stay organized. You meet with so many different doctors, hospitals, therapists and nurses that it can be overwhelming at times keeping track of everything. I wanted to share with you how I stay sane through it all. Haddie's first medical binder after just a few months was bursting out of it's seams. It has since been upgraded to a three inch binder.

These are just a few ideas of what to put inside. 

- dividers

- calendar

- business card inserts

- pencil pouch

     - I keep one for pens and one for receipts (for tax record keeping)

- clear page inserts

- pictures of the the cutest baby in the world :)

     - include monthly pics if you have them

     - I also include pre-op and post-op TR pics

Other helpful things to include

- call log

- mileage log

- medical expense log

If you are anything like me your iPhone is your BFF. You can keep track of everything in that little thing but sometimes it's nice to have it down on paper too. Especially when visiting with a new doctor or on the phone scheduling appointments.

When we met with HMae's new geneticist at UCLA last month he was so happy to see pictures of her as she grew and was so thrilled to see her pre and post-op pics. One thing is for sure... our BWS kiddos are so unique and different that any doctor who is familiar with BWS would be pleased to be able to see such pictures.

I know how overwhelming it all can seem at first so I am hoping this will help make life a little easier.

Health UPDATE for HMae:

We are still awaiting the results from her bloodwork that was done at UCLA. They are doing further testing for BWS since as of now we have only a clinical diagnosis. Also Dr. Martinez is testing for pTEN so we will wait ever so patiently a little longer:/ 

Her latest AFP was 8.5 which is awesome!

We recently found out she has Sensory Processing Disorder which explains so much now. We are still learning how to help her with this but hoping to start OT soon. She has also started Speech Therapy. Overall she is doing great and is having too much fun with her big bro lately. They have become such a pair! 

Much love,

Melissa Hughes