10th Scope / Banding

Reilly had another scope and banding today.  Dr. Noel banded three spots in her esophagus and is watching another.  She has still has extensive gastric varices.   Dr. Noel and I, were surprised that she had such significant development after such a good scope last time and such good bloodwork on Friday.  Due to our family's recent loss, the plan was originally to let Reilly go home and we would monitor her care at home, where under normal conditions she would have been admitted overnight.  In short stay, she was unable to hold down any fluids.  After the third episode, it was determined that Reilly needed to stay tonight for medication, observation and safety reasons because of the bleed risk.  So, here we are, disappointed at LSU's performance tonight, but pleased with the fact that Reilly has presently kept about 6 oz of apple juice down for over 4 hours.  She's had a few gagging episodes, but no expelling, so that's good.  I will update tomorrow or the next day with more information.  As it stands right now, we will be headed home sometime in the morning.  Thanks again for all of your thoughts and prayers. 

Friday's Bloodwork

Reilly had bloodwork done on Friday and for the most part it was good.  She is scheduled for another scope on Monday, which will hopefully be the last scope for a while, once she has her surgery.  We are doing our best to prepare, and are still waiting on one final piece of paperwork to be completed before we are completely set to go forward.

Please continue to keep our family in your prayers.

Also, don't forget ... POLKA DOTS & PIGTAILS BENEFIT ... January 14, 2012@7pm.  Please join us.  We have tons of prizes and would love to see you there. 

POLKA DOTS & PIGTAILS BENEFIT

Tickets are available for purchase from myself, Kim Duvalle and Amanda LaBruzza.  You may purchase tickets online through this link

http://finfoundation.org/2011/12/polkadots-pigtails-benefit-for-reilly-bladsacker/

Exit 32 and Under Review will be the entertainment and there will be a Silent Auction, 50/50 raffle and a Parade of Prizes raffle.  Free food, cash bar.  Please join us!

Prizes include:  Les Miles signed LSU football, Saints jersey, restaurant gift cards, massages, Saints signed football, Zephyrs Suite tickets, fleur de lis items, saints goodies, unique art, etc.

Merry Christmas and Happy New Year!

I hope that this finds everyone recovering from Christmas festivities and getting ready to ring in the New Year!  Santa came to our house and delivered to the kids' satisfaction, so that was definitely a relief!  And, HOW BOUT THE SAINTS?!?!?!  What a great night for the Saints, Drew Brees, and the City of New Orleans.  

At this time, Reilly is doing fairly well.  She has had a few setbacks, fluid on her ear (that the tube JUST came out of) and head congestion, but nothing that was too dramatic.  Reilly will have another scope on January 9, so I am hoping for a really great day, all the way around!  

We are gearing up for the benefit to be held on January 14, 2012 at 7 p.m., at the Westwego Civic Center.  A lot of work has gone into this event and we hope that everyone can join us.  Tickets will be available for purchase online and I will post a link as soon as it is ready.  There will be a Silent Auction and a Parade of Prizes raffle.  We have a Les Miles signed LSU football prize so hopefully our Tigers do it again and BEAT BAMA!  I will update soon with more details about the prizes for the benefit.  Check out the facebook page and LIKE IT, please, because prize details will be posted there as well!

Reilly is scheduled for surgery in Chicago on January 23.  Still waiting on a few issues with the insurance to be ironed out (confirmations / authorizations in the proper places, etc.) and we will be set.  We have made some arrangements, but are waiting for these few things to fall into place before completely finalizing our plans. 

Please continue to pray.  We've come a long way from her diagnosis, but we still have a very long way to go.  Let's hope that 2012 is a year of health and healing! 

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