This past Friday, a meeting was held for a medical review with the PCT (funding authority), therapists, nurse and family. Chris’ father George and his wife Donna attended the meeting on behalf of family. I was not able to go due to work commitments and they flew in specifically for the meeting with a view to become closer and more familiar with Chris' medical and day to day needs. It seems the meeting went well, his therapy protocol maintained, and different medications are being attempted to reduce upper limb spasticity (given the inefficiency of Baclofen on Chris’ case).

Upon a request put forward months ago, the hospital continues to search for a facility capable of providing phenol injections; Botox is completely inefficient for Chris as he developed immunity against it.

As it has been the case in recent visits from Chris family from the US, Gabriel went to spend the weekend (Friday + Saturday) out in the hospital area so that family time is maximized with both Chris and Gabriel. I am sure Chris was also happy to have his son around for a full day. I picked them all up this morning and George and Donna have departed back to NY this afternoon.

A new therapy will be introduced soon for Chris: RMNS (Right Median Nerve Stimulator). As I mentioned before, the device has been purchased, the approval from doctors obtained, and Chris PT’s and I met last week to discuss this. I’m waiting to hear from the PT and Chris will then commence the treatment (I will post more info separately once we start officially).

For a combination of ineloquent feelings, I can’t help bawling every time I see Chris now days. I just feel pained at the life he is living… and seeing him is confronting the reality of his life. There is not a single day that goes by without thinking of Chris, yet seeing him face to face has become so difficult emotionally for me. It will be soon 4 years and life has gone on for the world… but Chris. Life has stopped for him.

One of the recent therapy reports for Chris used the word quadriplegic to describe him. I was unsettled for days. I always thought of him brain injured, ANOXIC BRAIN INJURY. For some reason, quadriplegic seems to add another dimension of permanence to his condition and I was – I guess –saddened by that one word…

There has been a tragedy in Chris’ hospital last month - which draw some media attention. A mother killed her brain-injured son (who was a patient in the twin building next to Chris') . It is being reported in the media as mercy killing, other times as murder. I could not possibly pass any judgment whatsoever. I can only say I do understand what pain and desperation must have driven a mother to such action towards the most precious and loved being ever, her own child. Below two of the articles in the media:

http://www.hertsandessexobserver.co.uk/hertsandessexobserver/DisplayArticle.asp?ID=368779

http://www.thesun.co.uk/sol/homepage/news/article1963335.ece

I feel I live in between two worlds. One is Chris’ tragedy, loss, life, and everything surrounding it. The other one is also of extreme feelings, but of pure joy centered around this little energetic jumping miracle Gabriel. He makes me yell of happiness. My day to day is relatively happy and I feel grateful for everything…

Thanks for everyone and all those who continue to check on us. It’s been a rough journey and knowing people still care to read does make a difference.

With love