Status Update

Just an update on the newest issue...a week or two ago, we noticed that Reilly had these weird lines in her fingernails, close to the cuticle.  Well, Friday, one of her fingernails came off, at the line.  Today, another one started to come off.  She now has these lines in three of her toenails and all fingers except her thumbs and one pinkie.  Yesterday, I took her to the pediatrician, who was not certain as to what the cause could be.  After consulting with her GI doctor, it is most likely a biotin deficiency as a result of her liver condition.  This can apparently cause your issues with nails and hair, among other things.  SO, she will start on a biotin supplement. 

On a lighter note...we are going to do a Painting with a Twist Benefit at the shop in Gretna on Nov. 30.  Please come join us and don't forget to pre-register online.

One more thing...we have a benefit party planned for January 14, 2012 at 7:00 p.m. at the Old Fireman's Hall in Westwego.  Save the Date!!!  More information to follow...
 

Today's Scope

No bands today!  Reilly's esophagus looks AMAZING.  It seems to be regenerating, some of her scars from the first bands have healed.  There are a few spots that will be watched, but a great report.  There are still significant varices in the fundus (where the esophagus meets the stomach) and in the stomach lining.  She has three internal hemorrhoids now which have to be monitored and hopefully treated without invasive measures.

We are home now, and she has treated herself to watermelon and chocolate milk (interesting combo, I know), but it must be some form of bliss because she is very happy. 

I will update with more information as I know it.  Thanks again, and again, and again for all of the prayers and support. 

We have a Painting with a Twist benefit night scheduled for November 30 at Pw/aT in Gretna, 7:00 p.m.  Please pre-register online.  I will make an event and also forward the link via Facebook this week. 

SURGERY SCHEDULED!!!!!

We heard today from Dr. Superina at Chicago Children's Memorial Hospital and Reilly is scheduled for surgery on January 23, 2012.  We will have to be in Chicago for pre-surgery testing on January 18.  She will have a 5-7 day stay at the hospital (with no problems) and hopefully be discharged by January 30.  She will then have follow-up visits on Feb 3 and Feb 17.  SO, we will have to stay in Chicago until those appointments are completed.  Her additional follow-up care will be here at Children's in New Orleans with Dr. Noel. 

This is very exciting and very terrifying at the same time.  We are now trying to work out logistics and how to manage this whole experience. 

Reilly is holding up well, although we have lately been experiencing apparently every virus that is going around.  She saw the hematologist and we are following up with her in December.  We go back to have testing done with Dr. Begue in two weeks and she will have EGD #10 on Monday.  I will update as soon as possible. 

Thanks so much for all of the prayers and thoughts throughout this time.  Please continue to keep Reilly and our family lifted up, it works!  :D