The Murphy Boys

A weight has lifted and i am going through a re-birth of sorts. rrp is a terrible burden for us, but we have friends, families and the best dr in the world. Ayrie: I’m not sure how this affects him. From not being heard, to strange reactions from strangers, surprise hospital visits, constant anesthesia, physical pain, etc…. and yet a 3-year-old doesn’t have the words to tell he how he feels or what he needs. He can tell me with words when he’s sad, scared, worried, frustrated, has ‘owies’ or…read more

after weighing all of the options we are going to seek treatment again in Boston.  this means expensive flights, hotel rooms and eating in random restaurants.  and, it means not working/ earning money!  emily had the great idea that when people ask ‘what can I do to help’ that offering a donation towards our travel would be a wonderful way to help.  Even $5 is so appreciated and really adds up.   if you would like to help, there is a donate button on the side.  If you know me you…read more

the ENT doctors here basically told me that if we decide to seek treatment in boston that we are no longer welcome here…  an ENT directly told me “if you decide to seek treatment in Boston, you should move to Boston’ and another doctor told be ‘if you should end up in our ER it might be hard for you to get an ENT consultation’. it’s hard to explain the enormity of that.  this disease is unpredictable.  in the year and a half that we have been dealing with this…read more

it’s my third night on a hospital couch and i see many, many, many more nights like this in the near future.  i wish i was sleeping as soundly as ayrie right now or home cuddling with shiya.  i’m so grateful that people are taking care of shiya so i can be here all the time for ayrie, but i really miss the day to day of being shiya’s mom.  i love that little guy!! the murphy/bicking/trimmer clan all cut there vacation short to be here with us.  There have…read more

Ayrie has been so lethargic and low energy the last few days that I was worried he was going to be a 3-year-old with bed sores!  But his energy is back.  I knew this when I walked in the room to find that the nurse was having a hard time getting him to sit still for his blood pressure because he was busy pressing every single button on the bed. Emily’s facebook status from tonight: Emily Murphy is so happy to have spent the day with Ayrie. Glad to see…read more

Relevant now Gefitinib Therapy for Life-Threatening Laryngeal Papillomatosis Recurrent respiratory papillomatosis: a review And a whole bunch more…. click here don’t worry.  i don’t expect anyone to read these!  But some people ask so here you go.  There are also two RRP websites that I’ve listed below: RRP ISA Recurrent Respiratory Papillomatosis Foundation

Some of you have written to ask for Ayrie’s address or to ask about what he might enjoy. Ayrie is on isolation so he won’t catch an infection from any of the other kids on the floor and therefore can’t take advantage of any of the great play areas. So any books, puzzles, or games that can be played in the hospital room are great ideas! And cards are a great reminder of all the people who love him. Patient Ayrie Murphy Room 3115 Children’s Hospital of MN- Minneapolis 2525…read more

Today was too much. They told me that ayrie has scar tissue on his vocal cords. So much scar tissue that his airway is compromised they don’t want to send him home. It’s not safe. They want to keep him here for the week to heal from this surgery, and then do another surgery next week to cut through the scar tissue to open his airway back up. Then they will heavily sedate and paralyze him (think coma without totally shutting down brain activity) for 3-5 days while this wound…read more

monday morning ayrie, shiya and I went to the pediatrician’s office to have them listen to ayrie’s breathing. his breathing sounded labored early Monday morning and was quickly deteriorating. the pediatrician sent us down to the emergency room where the staff gave ayrie nebulizer treatments. i was holding ayrie in one arm as he sobbed in fear and tried to rip off the mask. i held shiya in the other arm as he sobbed because it was all just too strange. luckily garrett came in and took shiya away because…read more

I thought our move to Minnesota signified a new wonderful beginning. I was soooooooo wrong. Yesterday and today were nearly unbearable. I’ll write more soon but it’s time to get Ayrie to sleep. He’s on the hospital bed with a stuffed elmo and curious george, watching Handy Manny on tv. He’s not going to be happy that it’s bedtime!