Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, October 30, 2011

And So It Begins...

We had a very busy week for Meagan's first week home. She had her first string of follow up appointments begin .

First she saw the Pediatrician. The doctor did a weight check, and other basic check-up tasks.  There were 2 nurses who had never seen a shunted baby.  The doctor asked me if it would be ok for them to come see her.  I said I was fine with it ...  the more people know about Hydro ... the better for our Hydro kids in the future. According to the Pediatrician, there are kids at the practice with acquired Hydro, but Meagan is the first congenital case for them.  We told the doctor about pulling the feeding tube, and she was also supportive.

We had to also see the GI doctor .  He said also that pulling her tube was the best thing we could have done.  He told me he likes the tube for supplementation in vigorous eaters who simply tire out quickly. He said cases like Meagan's, where the baby starts to eat but is a more slow or lazy at eating, he really views the tube as more of a hinderence because it enables that eating attitude.  He said a baby with Meagan's eating pattern, he would have liked to see her tube pulled as soon as she started to have that interest in the bottle.  He told me she looked great and would be discharged from his care. One less doctor we have to see!

The only other doctor Meagan saw this week was her eye doctor.  The doctor looked at the nerves behind Meagan's eyes and said they were shorter than normal. She said it's just something to watch as it could affect her vision.  Meagan is also not tracking with her eyes yet. It seems she isn't having fluid eye function.   The easiest way to describe it is she will look 'towards' me but will not look 'at' me - her eyes wander and often times she just stares. I can tell she hears me and wants to look at me because she will become , alert and pause her activity...but it's like her eyes can't 'find' me.  So just another thing we have to watch and see how it pans out.  I hope she at least has some sort o vision.

That's all for now.  We head to Duke this weekend!  So excited to see our little girl helped by the great doctors there who are actually reaching out and advocating for our Hydro kids.