It's day 22 in the PICU in Rady's

Here is Gavin in 2008 roughly 9 months before Tay-Sachs disease robbed him. His spirit is so happy and the only difference today is that he is in a weaker body. It's day 22 in the PICU and I apologize for not writing a recent update as it has been rough. Gavin's recovery is very slow and he has been very dependent on the bi-pap machine. Each time his pressures are lowered on the bi-pap, he begins to desaturate and his carbon dioxide levels become high making it a little bit hard for him to breathe on room air. Ferd and I will be meeting with the pulmonary and PICU team again today or tomorrow to determine next steps as the ultimate goal is for our boy to come home and be comfortable surrounded by his family and friends that love him. We can't wait to sing, dance and just laugh and be silly around him and to just surround him with love. We don't want Gavin to suffer here in the PICU if he is not getting any better. Ferd and I are doing our best to stay strong even if we feel like falling apart, but we still have the positive attitude that he can overcome this if Gavin wants to; you never know with this Spider-man warrior as he gave us an action hero surprise back in 2011 recovering from a month in the PICU while in Washington D.C. and managed to never go back to the hospital until recently. We are going to try our version of postural drainage here in the PICU if it's safe and see if it will help Gavin. He sure misses his faith healer, acupuncturist, chiropractor and holistic doctor which I believe has made an amazing difference in his quality of life since diagnosis, but most of all, it is also his family, nurses, teachers and therapists that have attributed to Gavin being a warrior. Hopefully he can get back to all of them very soon. For now, please continue to pray for our Spider-Man warrior and for our family. — at Rady Children's Hospital-San Diego.