MRI

So today was Elan's second follow-up MRI.  Feeling more accustom to the hospital now.  Sad to say but we recognize someone at every turn - literally.  Nice feeling at the same time since not so sterile of an environment.  Elan did a great job going to the MRI room - we needed a sedative this time too.  Harder this time than others, i guess just because we have been away for a month and getting into our own new routine at home.

While he was in the MRI - 3 hrs since brain and spine - we did some hospital things.  Stopped by and met the pathologist Dr. Cohen.  He was such a kind man and walked us through the entire pathology of Elan's AT/RT.  He showed us specifics of what makes it AT/RT under the slide.  He showed us what made him think at the frozen pathology why he thought it wasn't, which was a kindness on his part.  He did his Dr. deal-e-o but then we ended up chatting for 45 minutes about what path we are on and what he suggests.  He had been to Iowa several times and had a sparkle in his eye waiting for me to ask where - Fairfield :).  So needless to say big into meditation etc.  He has been practicing since 1973.  Really nice since we then asked if anyone in town he suggested we seek out for alternative treatments and he gave us a name hadn't heard of - should have since been on Dr. Oz etc but you know us!  So I reached out to him today and hopefully will hear back.  We were able to ask him about his opinions of Dr. Speight whom we have an appt. with next week.  Good conversation.  He did think we should really, really push for Proton Beam... made us feel like we are on the right path once again.

He said we really did get the "A" team and he would want all who we have for his own kids.  This was unsolicited.  He asked how we ended up picking the ones we did and we were able to explain how as Jehovah's Witnesses we have a liaison committee that seeks out fantastic doctors who are trained in alternative options to whole blood products.  He really was amazed that we were able to get the best of the best for all aspects of Elan's care.  He said he really has much respect for Jessica Bell and really thinks she would move mountains for Elan if she thinks it would help him.

We were able to see Jessica today just doing her rounds but only while Elan was doing his MRI.  We went back to see her again with Elan but she was grabbing lunch. We did get to drop by PICU and see our old favorites - Seria was there and she was so happy to see Elan!  We were also able to tell her he hasn't had any seizures etc which really made her so happy.  Nice to see such a team behind Elan - we were there for a month so really got to know everyone!

So we came home and did naps then treated the boys to neighbor Sam's pool.  He is out of town the next few days at New Orleans Jazz fest so gave us free reign of the pool.  Such a great neighbor!

So basically trying to make a stressful day a fun day - I think success!