THANK YOU SO MUCH

My friend, Amanda, set up the Painting with a Twist benefit that was held this past Wednesday... and it was a HUGE success!  By all accounts, everyone had a fabulous time and the event was packed.  The paintings I have seen look fantastic.  Thank you to everyone who participated.

The Spaghetti Dinner at New Orleans Ladies Ballroom was beyond measure!  The Terrytown Lions Club was kind enough to provide help at the door and with the prizes, and thanks for their generous donation.  Over 200 plates were served!  Our deepest appreciation to Ms. Jan and the employees of the Ballroom for donating the food and their time and putting the event together.  To our family that donated food, time (cooking and serving), and love and support, we really do not know how to adequately say Thank You!  Reilly had a good time, and she ate 3 plates of B-Sketties!  She was apparently hungry!

The out pouring of kindness and support from our friends and family and their friends and their family and the community has been overwhelming.  There are so many to thank and not enough words to put it all into perspective.  God is good.  Without Him, I do not believe we would be able to find our way through this. 

Please continue to keep our family in your thoughts and in your prayers.  We have a long road left to travel.  With God's grace, love and support from our family and friends, and laughter wherever we can find it, we will make it through with our heads up.  Thank you, again, with all of our hearts!

5th Scope / Banding

Finally home from the latest banding.  Dr. Noel banded three spots this time, all in the lower esophagus near the esophageal sphincter (by the stomach).  Reilly's upper esophagus had no new formations (which is AWESOME) and we have to go back for another procedure the week before we go to Houston.  Reilly does have gastric varices forming more quickly now, which is expected and should be resolved by the bypass/shunt procedure. She can start having a little juice in about 10 days, which she heard the doctor say and is very excited about.  We had to push the start time for her procedure back about an hour and half because the little stinker snuck raisins yesterday morning and we did not want any complications with the anesthesia.  I guess she'll be Raisin girl from now on. 

Reilly was passing out hugs and kisses to her nurse before we left, which made Ms. Casey very happy!

Happy Easter!!!

Since Cole didn't have school yesterday, he, Reilly and I went to City Park to play and check out the ducks.  What fun we had.  We only stayed about an hour because Reilly got very tired, which was expected, and she napped for about an hour after.  Today, on our list of things to do, is dye Easter eggs and get ready for the Easter bunny tonight.  Reilly has informed us that today is Easter Bunny Day and tomorrow is Easter, so we have to do something special, apparently.  She also told Cole that if he doesn't let her sit with him, she is going to call the police on her Minnie Mouse cell phone - I would love to hear that phone call!  Needless to say, it has been a very relaxed, VERY amusing day and almost 1/2. 

We have a very busy week ahead of us.  Reilly has another procedure on Tuesday, which we are hoping is outpatient, but are expecting to stay the night in PICU.  Wednesday evening is Painting with a Twist, Thursday evening is the Spaghetti Dinner and on Saturday is the Pool Tournament and OLPS is hosting a Bake Sale on Saturday and Sunday.  LOTS of events.  Please, if anyone needs more information, contact me.

I wish everyone a very happy Easter Bunny Day and an even happier Easter.  We certainly have a lot to be thankful for.  Please continue to keep us in your thoughts and prayers - you can never have too many! 

First Clinic Visit

Yesterday, Reilly went for her first clinic visit at Children's.  Dr. Noel indicated that her liver is enlarged, about 1 1/2 times what it should be.  The good news is, her spleen is normal size.  We have to watch for any bleeding and bruising.  Some of the blood vessels in her chest and abdomen are very visible through the skin which is something that must be carefully watched.  We also have to check for signs of anemia (in her eyes, hands, etc) as an indication that she is actively bleeding somewhere. 

Dr. Noel has spoken to Dr. Karpen in Texas several times and they are ready for us in Houston.  Dr. Noel is very confident that we will be comfortable with him and with Dr. Goss (the surgeon), and that they will be able to perform the surgery there.  Now, we just have to wait until May 25 to find out for sure! 

Reilly has her fifth scope/banding next Tuesday. 

Thank you for all of the prayers and support that have been heaped upon my family.  Please continue to lift us up so that we can handle whatever comes our way! 

SMILING A LOT TODAY!!!!

Due to the effort of amazing people associated with the LSBA SOLACE program, the approval for Reilly to receive treatment from Texas Children's Hospital was given around 2:00 p.m.!  I can honestly say that I have smiled more today than probably any day since this journey began, so THANK YOU for the smiles!  :-D
 
We are so very fortunate to have contact with so many people who are willing to help and willing to reach out on our behalf.  It is a beautiful thing to witness firsthand so much good and a very overwhelming experience to have so many gifts bestowed on you and your family all because people want to help.  Simply the grace of God, I suppose. 

Today's Bloodwork

Over the past few days, Reilly has been very tired and relatively inactive, with a few moments of craziness and hyperactivity thrown in the mix.  Barring that, she is happy and funny as usual.  She was such a big girl today when getting her blood drawn, only cried when the tech actually stuck her.  She got about 20 stickers and decided that her legs were a good place to put them, but fussed when she pulled them off because it hurt!  Imagine that.  I think that all the lab techs at Children's remember her, because today, the girl had a pretty bandaid ready for her!  Reilly thought that was pretty great, even though she was prepared with her own bandaids in her pocket!  Yes, we should take stock in bandaids.  The longest part of the experience was walking what seemed like a mile from the truck to the hospital and a mile back.  Exercise, right?!?!?! 

We have the jewelry party this Saturday and then other events after.  Thank you to everyone for keeping us in prayers and lifting my family up during this time.  It is a blessing to know how many people care and want to help in whatever way they can.  Really and truly amazing. 

Update

Reilly is feeling very tired today and has been very attached to me.  She says she doesn't feel well but can't put in to words what is not right.  This scares me in more ways than I can adequately express.  I'm terrified that she is going to bleed again and we won't know and will have to relive some of the experience of last month.  I am hoping that she is simply having a day that is just not so great.  Ms. Susan got her purple glitter nail polish AND painted her finger and toe nails, so she has been showing them off to anyone who will pay attention!

We go back for blood work on Wednesday, and have a clinic appointment next Tuesday. 

This waiting and watching is very stressful and heartbreaking.  She remains on a very restricted diet and on activity restrictions.  It is very hard to tell a child (who appears outwardly very healthy and fine) and reasonably expect her to understand why she can't do things she has always done or eat things she has always eaten.  My promise to her is that when the doctor says she can eat whatever she wants, we will get one of everything and she can have a feast!  That works for now, so I will take what I can get!

Upcoming Events

These are few of the events that our friends and family have arranged, so save the dates!

Silpada Jewelry Party - April 16
Painting with a Twist / Purpose - April 27
Spaghetti Dinner - April 28
Benefit Pool Tournament / Parade of Prizes - April 30
One Smart Cookie Day - May 4
Benefit Day - Haven Massage - May 1 & May 15

More information about these events will be posted VERY soon and flyers should be going out sometime next week.  Thank you for keeping us in your thoughts and prayers and also for helping us. 

Fourth EGD / Banding

We made it home yesterday from the fourth procedure.  Very exhausting night Wednesday after the procedure.  The doctor placed 5 bands and discovered that one of the varices in her stomach is showing signs of ulceration (getting ready to bleed).  The gastric (stomach) varices will not be treated unless and until they rupture.  Banding the gastric varices can cause many more complications than leaving them alone and it is too great a risk.

Reilly vomited twice after the procedure, losing one of the bands in the process.  Losing the band is not necessarily that big of a deal, but the vomiting itself was very unsettling.  So far, this was the roughest procedure yet.  She was very nauseated throughout the night and was placed on medication to help reduce the gagging and coughing.  Any kind of strain placed on her body (through coughing, vomiting, lifting, playing hard, etc) can be a catalyst that causes the varices to rupture as it places too much pressure on/in the veins that have already been weakened.

She will have another procedure in three weeks.  Of course, should anything rupture between now and then, we will have to return to the ER for treatment.  95% of the varices in her esophagus have been treated, however more can appear at any time.  3/4 of her esophagus is looking good, with a few spots that have signs of possible varices forming - which will be treated if/when they appear.  The reason for banding the varices in her esophagus is this - should they rupture, she could aspirate.     

Dr. Noel (GI) has spoken to Dr. Karpen in Houston and now we are waiting for insurance approval.  Dr. Goss (surgeon) and Dr. Karpen (GI / Hepatologist) are going to arrange their schedules to meet with us and examine Reilly on the same date / time to make the appointment more informative and effective.  Dr. Noel had a friend and surgeon visiting from Johns Hopkins while Reilly was in the PICU and wanted his friend to meet his "very special patient with the infectious personality".  How very nice it is to have your treating physician want to show off your daughter to his friends!

I will post again later today, so stay tuned!    

Getting Ready for Procedure

Reilly goes back to Children's Hospital today for her fourth EGD/Banding procedure.  Depending on whether or not any banding has to be done, will determine whether this one is out patient.  If no banding or bleeding, we will be home tonight.  If banding does have to be done, we will stay in PICU like before.  What the doctor sees will also determine how long before the next procedure - 2 weeks or 4 weeks.  SO, I feel like there is a lot riding on this procedure.  Dr. Noel (GI) indicated at her last procedure that he thinks she may be "over the hump", but will have no way of knowing until this procedure.  I cannot tell how much I hope so.  There is no way to measure how quickly the varices are forming except to go in there and look. 

We are still waiting on insurance approval to go to Texas Children's Hospital for a second opinion.  All of Reilly's records have been forwarded, so as soon as the insurance says go, well, that's where we go! 

I will post more information about today's procedure as soon as I can.  Thank you all so much again for your thoughts, prayers, support, friendship, and love. 

WOW! and THANK YOU!!!

I believe that the Chili's Gives Back Night was a huge success.  Thank you to everyone who came and participated, and thank you to those who waited over 2 hours for a table!  It was pretty amazing.  It is a neat thing to witness the kindness of the human spirit at work and see it in abundance over and again.  There really are not enough words to adequately express our gratitude.

Stay tuned for upcoming events, more information should be posted by this weekend.

Again, THANK YOU for keeping our family in your prayers and THANK YOU for helping us. 

Today

Reilly saw her pediatrician today to make sure she doesn't have any infection (because of the congestion and coughing she has going on) before her procedure on Wednesday.  Well, no infection.  It seems to be allergy related, which has triggered the asthma cough.   She will remain on benadryl and was cleared by the pediatrician for her procedure.  Say a prayer that we don't start with wheezing because that creates a problem - inhalers and breathing treatments dialate blood vessels, which would NOT be a good thing.  Reilly remains a very happy-go-lucky little lady, um rockstar, and that makes me smile, a lot!  Small blessings go a long way!

Don't forget - EAT AT CHILIS - Tuesday April 5, 2011!