Ready to FLY

The countdown to our NYC trip has been on for a week or so.... Grier gives me the countdown at least daily... you would think we are going on a vacation or something! He has a plan.... and I have a plan... mine is all medical hence my nickname Grier has given me... "medicine momma!"-- everyone else has another nickname.. Grier is more worried about "his NYC routine"- that is how it should be.. I guess! I will worry about the medicine part of these trips.  He told me the other day that he thought we should bring an extra suitcase with us... when I asked WHY, he said because he wants to go shopping at "FAO Shorts"~ funny.. since everytime we go I always tell him to pick something small like a matchbox car that will fit in our suitcase home!! He was ahead of me this time.  
Our schedule is very packed with appointments.... Thursday he will have his CT-- he can not eat or drink anything before except for the HUGE amount of contrast.  After CT.. he will need to take his SSKi drops ~2 hours before his MIBG injection  Friday will be the MIBG scan-- the long slow scan looking head to toe for NB cells... This wil be the 5th one I have actually gotten to sit beside him in and entertain him and keep him relaxed so he stays still as a statue. I have yet to watch the screen as it scans his body... I honestly think I would throw up if I saw the screen!  I have been dreaming about this crazy schedule since last week.... there are so many things to remember and I forgot something in my dream.. and missed our flight home.. clearly scanxiety has taken over my sleep! 


The surprise for us this week was a flight showed up on Corporate Angels.... We are flying with one of the banks and someone we know so it will be fun- crazy that I am not allowed to say the bank name.. but this bank is on my favorite list! This earlier flight  will give us all Wednesday to get ready for the two days at the hospital and maybe squeeze in something fun. I am hoping there will be something fun at the RMDH Wednesday Night...or maybe we will try to venture out and see a Rangers game... who knows... Grier might have me shopping for a Jets jersey after last nights win! 


After the MIBG scan on Friday, he will have his bone marrow tests... we will go back to the RMDH and clean the room and pack our crate and then we will try to get out of NYC.... and head home on USAirways! Hopefully he will not be in too much pain... I also just checked the weather and it will add to our excitement on Friday... storm possibly coming to NYC?? This is a quick trip packed full of questions about what is going on in his body right now... and what trials we should try to keep NB away.  I just recently started a process at CHOP... I wanted to know about a vaccine trial I heard they had that was opening up soon.. so it looks like scans and reports may be sent to philly as well-- just to see what all are options are at the time.  Really... I am most concerned about NYC this week -- one day and city at a time :) 


Nothing else really to report.. the kids had some photos taken by an awesome photographer that happens to be in the family.  She captured their personalities and even made them look like they enjoy each other.  I am not sure when all the growing up took place... but they look older and wiser.  If you need a some pictures taken.... check out Jennifer.... she did a really nice job! check out her site..www.jlhphotography.com


Next update from NYC on Wednesday the 19th... if we have internet at the RMDH :) 


www.gogriergo.com for pictures that I am talking about.... caringbridge has a size limit