A Lil' Boy's Journey to Live….


Hello…sorry it took so long, but we are home!  We came home from CHOP on Wednesday.  They kept Riley a couple extra days to try and get his feeding situation under control.  We saw someone from Speech Therapy, but she said that Riley swallowed good, and that there was nothing she could do for his gag issue.  He is, now, on 2 meds. for his reflux, though.  We really need Riley to gain weight.  The woman from nutrition said that if he doesn’t get to where he needs to be the thought of a G-Tube is out there.  Well….we certainly don’t want that so his primary has suggested baby fruit, and cereal by spoon.  Sooo…we started trying that yesterday, and I think he thinks it’s medicine.  We need to keep working on it!
Anyway….as you should already know…surgery went well.  I know my sisters, Terry and Chris, both updated while we were in the hospital.  Dr. Spray did a sutureless repair of the Pulmanary veins, and put a patch on the Pulmanary artery.  When he spoke to us after surgery he seemed very pleased with the surgery.  Remember….he fixed what he told me, when Riley had his first surgery, that he couldn’t fix.  I know that there is no guarantee down the road that the veins won’t get obstructed again, but for now we are in good shape, and looking forward to the Stage 2 surgery.  Riley will need another Cath. before the Stage 2 to be sure the veins are still in good condition.  They need to be in order to do the next surgery.  Keep praying!  Dr. Spray’s plan is to do the surgery around 6 months.  We are probably looking at sometime in the fall.
So….other then all that….we are home.  Riley should be getting his crib tomorrow.  He has been in the co-sleeper at home, but seemed to like the crib at the hospital.  So we have decided to move him to the big boy bed!
I also wanted to thank my sisters, Chris and Terry, my mother, Mary Kay, and Jackie and Dennis for coming to the hospital to visit us!  It means alot to me that you all took time out of your busy lives to come to CHOP.
Also…thank you to Terry for the goodies you brought me! 
Extra special thank you to Chris and Lou for keeping Christian.  Mary Kay…thank you for the time you spent with Christian on Sunday.  This situation, which has become my life, would be impossible to get through without all of you!  Thank You!!

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