http://teamriley.org Riley has Wiskott-Aldrich syndrome. His big sister Sydney is donating bone marrow to help her little brother Fri, 07 Sep 2007 21:55:13 +0000 http://backend.userland.com/rss092 en It's been almost six months since we left CHOC in March.  Riley's recovery has been nothing short of a miracle! We are proud to say that we have only been back to CHOC for check-up's.  This summer Riley was released from his 180 day isolation post-transplant.  Thanks to the team at ... http://teamriley.org/?p=54 Riley has returned home from Children’s Hospital of Orange County!  The little big man is now sleeping in his own bed!!!!!  He still has to go to the doctor nearly daily but he’s chillin’ with his big sis and hanging with the parental units 24/7!!!   The last numbers were:  ... http://teamriley.org/?p=53 We are all becoming tired of the grind. Mom is with Riley everyday while Daddy is working and caring for Sydney.  Meanwhile the grandmas are both working full time and still putting in much of their off time with Riley.  Papa too, is becoming a bit fatigued by the long ... http://teamriley.org/?p=52 Riley is still hoping to come home soon.  Just when we think he’s ready to head out the door…his numbers don’t add up and he has to settle in for a little longer.   CHOC’s has extremely high standards and we know they have Riley’s health as priority one.  CHOC’s Rocks! Word ... http://teamriley.org/?p=51 Last week was a switch-up week for Team Riley.  Mom continues to stay with Riley on most nights and some of the days, with Gramma Kathy relieving Mom a couple of nights a week and helping to make sure that Sydney gets where she needs to go.  Dad gets to ... http://teamriley.org/?p=50 The week in review:   Monday – Riley is still on TPN (meals in a drip bag).  He isn’t eating yet and that is somewhat of a concern…   Riley may or may not have surgery today.  He is due to have surgery on Wednesday but if a slot opens ... http://teamriley.org/?p=49 Riley has all but kicked his RSV! He still has a cough but he hasn’t been gasping for breath for several days now. It was so hard to see the little big-man sucking hard only to get short, little breaths…but now he’s up and playing for hours at ... http://teamriley.org/?p=48 Riley turned one yesterday! So far being one is very busy. Riley had to work with the speech pathologist, the occupational therapist, the physical therapist, the repository therapists and take a bath…all in the same day! He was a busy little trooper indeed! Riley has been showing ... http://teamriley.org/?p=47 It has been a long hard week.  But as we begin another week…we are happy to report that Riley is still a stud and Mom is as tough as her son. Amy is and has been at the hospital constantly since Tuesday night.  She has had a good night sleep ... http://teamriley.org/?p=46 We've been very busy this last week!  Even though Riley's transplant went amazing we hit a minor bump in the road.  Over the weekend he began coughing which normally would not be a problem but when you have no immune system that is trouble.  By Sunday night it got much ... http://teamriley.org/?p=45