Tuesday, May 17, 2011

Our Saving Grace: Ryan House

During this grand adventure Camila is lucky enough to stay at Ryan House--which is literally a walk away from Soliz who is recovering at St. Joe's Hospital. Ryan House is a respite home for children with potentially life limiting conditions. It took me a long time to embrace that my kids fit into this group. The uncertainty of the lives of our children is what links us together. There have been many moments throughout the lives of our kids that have been fragile and uncertain. Like this moment as I sit here and type while my son is recovering from a major surgery and I have to just keep myself from looking at those vitals every few minutes. What if his oxygen keeps dropping? How are we going to get through this intense recovery time? How are we going to make it through all this pain? And I constantly pray that he will not be set back too far from this, that his spirit is still intact and once this intense pain subsides that he is able to chew still, a skill we have been working towards for over 3 years.

So while Soliz has been going through his own journey, Camila has been having a ball at Ryan House. And because Ryan House is so close to the hospital were Soliz is recovering I have been able spend time with her there. We even got to go swimming in the therapy pool yesterday (day 2 of Soliz' recovery). Staying connected to both of my children is always important and having us split apart like this for a few days is so hard. But we do feel blessed. While Camila is at Ryan House she gets to have pet therapy, music therapy, go swimming almost everyday, spend time with amazing volunteers and she has had her own personal therapies (like PT, OT, Speech and Vision) everyday. My mom stayed with her in her room her first night and my sister Amy with her on her second night. Andre' got to stay with her last night. So even amongst all these challenges we are fully and truly blessed.

Soliz update: Soliz is having to be very brave (and so are we). The pain is tremendous and he has finally been able to be relatively comfortable over the past couple of days. He has weaned off the drip pain med and now is just on Tylenol with Hydrocodone every 4 hours(which we will go home with), Fentynol (as needed) and Valium (as needed). He is still on a bit of oxygen but once he's off the Fentynol and Valium he should be able to get off the oxygen. So it is true that each day gets a bit easier but it is a slow and painful process to be witness to. Once there is a bed available he will move out of the ICU and onto the floor. We have created such a beautiful, healing cocoon here that I don't think any of us are looking forward to the move. Soliz did open his eyes and look around (with out tears or fussing) for a few minutes, a couple of different times today. So we just stay positive and hopeful and keep praying for a smooth recovery for Soliz and our family. Still, thanking the Universe for all the prayers coming our way.


tia hil said...
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tia hil said...

Beautiful entry HJ. You are so strong! hugs and prayers