A Lil' Boy's Journey to Live….

Archive for September, 2008




Ok…the pic is not that good!  It is from my phone!  The point of the pic, though, is to show that Darren and I went to a Phillies game today.  Sooo…let the Thank you’s begin!  Thank you, Jackie, for sharing Riley’s story with Bernie.  Thank you to Jim and Bernie Jackson for the Phillies tickets!  The seats were great!  28th row from the field!  It was nice for us to go out together, alone.  That leads to a Thank you to my parents for keeping the boys!  Can’t forget Aunt Terry who stopped by Granny and Pop-Pop’s to help out for a little while with Riley.  It was a GREAT day that ended with dinner at my parents.  A little chicken and dumplings anyone?!


Riley in his saucer!  Still growing into it!


Yesterday I was givin’ another surprise.  O’Hara’s salon, which is on my corner, and who has been helping with the Extreme Makeover petition, gave me a gift certificate to get my hair done.  Saying, "I deserve it!"  I don’t know that I deserve it, because I’m doing what ever other mother would do in my situation, but it sure was nice!  I did actually just get my hair done because of another gift certificate I got from Hair Suites in Cherry Hill, but when I’m due for a cut, it’s nice to know it’s covered!  Thank you, again, for everyone’s kindness!


Today we went and had our portraits done.  Lisa was wonderful!  She took great pictures.  Thank you, Lisa, for openning your heart and your home to us!!


I want to Thank Linda, from Hair Suite, again for the gift certificate.  I love my hair!
Also…Thank you, Marisol and her family, for all the great gifts you have given Riley.  We really appreciate the diapers and wipes, and the outfits are so cute.
Again…these women are examples of the great people who are doing so may great things for our family.


Going to Pop-Pop and Granny’s!


thank you

I just want to let everyone know how overwhelming everything that is going on around the O’Brien family is.  This is overwhelming in a good way.  The love and support from everyone, whether they be family, friend or stranger is being greatly felt.  Thank you to Riverside Schools for your Jean Days, Somerdale Park for your dress down day on Friday, Applebee’s who is having a dine and donate for Riley in November, Lisa, who is going to take our portraits on Sunday, Linda from Hair Suites for the gift card, Jackie for everything you do, and Jackie’s family, Chris, Terry, Granny, Pop-Pop, everyone who has signed the Extreme Makeover petition, and to anyone I may have forgot.  I/We will always remember everything you have done for us.  I/We are eternally grateful:)


Sooo….as you may have seen in the guest book, Aunt Terry, had a Jean’s Day at her schools in Riverside.  It went great.  We are so grateful!  We have put the money away, for now, until our next stay at CHOP.
Another great things happened for us over the weekend.  Jackie gave us an article about photographers who take portraits of sick children and their families free of charge.  I found a great lady, Lisa, in Medford, who is going to do our pictures on Sunday.  We are so excited for this chance to have professional portraits done!
I’m sure you will all get a chance to see them.
Until later…


Hi…Sorry I haven’t updated.  Riley came home from the hospital on Monday.  Things went just as before…they lost the pulse in his foot from doing the Cath.  This time, though, he actually had a doppler ultrasound done that showed a clot.  There was blood flowing around it, but they wanted it to clear.  So he was on Heparin for 4 days.  Being on Heparin means getting alot of blood drawn for Riley.  Half the time that he was stuck they weren’t able to get anything.  His poor little hand, arm, and foot.  They are all bruised now.  When we left the hospital Dr. Rome decided to put Riley on Plavix.  It’s not really formulated for children, so we can only get it at CHOP.  The hope is that it may help with the scar tissue forming in the veins.  It will be a God sent if it helps.  The veins are Riley’s main issue.  (It tops the list of all his medical issues.)
Anyway….Dr. Rome used cutting balloons to open two of Riley’s veins.  He told us to be prepared for them to become obstructed again.  He said there is a 0 to 1% chance that they WON’T obstruct, but he wants to give that a chance.  If they do obstruct again he will, then, put stents in those two veins.  I asked if we were, now, headed back on track to Stage 2, and he said no.  We are headed nowhere.  We can’t do or plan anything until we see what the veins are going to do.  So that is why we are now taking things wk by wk.
Today Riley went to CHOP to see Dr. Szwast, and to have a baseline echo done.  Dr. Szwast says that Riley’s lips looked pinker then they did before Friday.  I never thought that he really looked that blue, but she has the professional eye.  Riley is still right below 11 lbs.  We were discussing him needing to gain weight.  She brought up the G-Tube again, but she is going to give us some more time.  If we could just get Riley to stop throwing up all the time he would gain weight.  Shes hoping, though, that the 27 calorie diet will help.
Riley goes back, again, Oct. 8th for a sedated echo.  So we have a month to pray….pray…pray!  We need to have an echo that isn’t bad news.
Until later…..

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