All My Specialists

Dealing with Lillie’s conditions can seem somewhat daunting when you stop to think about all of them at the same time. Thankfully, we have team Lillie.

As we introduced ourselves in the “About me” section of this blog we included all family, friends, doctors and therapists in Team Lillie. Without the contributions from everyone, I don’t know how we would keep up. For this post, we would like to focus on the doctors and therapists - Lillie’s many friends.

All told, Lillie has 14 doctors that are following her progress. We are about to add a 15^th when Endocrinology comes on board (more on that in a later post). We have had one doctor tell us we don’t need to see him unless another one finds a problem with her kidneys. He’s on injured reserve from the team, if you will.

Team Lillie consists of the following doctors/specialists:

Pediatrician, Cardiologist, Dentist, ENT, Gastroenterologist, Geneticist, Nephrologist (injured reserve), Neurologist, Nutritionist, Ophthalmologist, Orthodontist, Orthopedist, Plastic Surgeon for cleft lip and palate, G-Tube Surgeon and Urologist.

Team Lillie also gets a lot of points from the bench:

Occupational Therapy, Physical Therapy, Speech Therapy, and Cleft Lip and Palate coordinator and Social Work.

So many people working to help Lillie can get a bit confusing. It is only through Carrie’s (mom) love of spreadsheets that we can keep track of them all. Carrie keeps an updated list of doctors, their specialties and when the next appointment is. It also has a second page that lists Lillie’s conditions, medications, phone numbers and emergency contacts. We bring a copy of the sheet to doctor visits to hand to the nurse or doctor. It keeps us from having to list everything on forms and answer questions every time we go.

In case you’re wondering, no, Rob (dad, me) is not the organized one. I would be lost without the spreadsheet and my wife but, don’t tell her I said it.

For our schedules, what does this mean? Lillie has 5 in-home visits per week from OT, PT and ST. Most weeks, she has 2 appointments in doctor’s offices for follow-ups, ultrasounds and other tests.

The good news for us is that all the doctors we work with are connected to or are at Dell Children’s hospital, here in Austin. While we have had to change one or two doctors to get where we are, we are very happy with the team we have helped bring together.

Moving forward, we’ll try to keep everyone up to date as we run the gauntlet of doctors. Up this week: Cardiologist (check up on aortic stenosis) and Plastic Surgeon (pre-op visit for upcoming cleft lip and palate repair).