We arrived at the hospital way past Chris’ lunch time thanks to traffic and road accident on the way… Chris was on his wheelchair bent and twisted again, head leaning to one side. It is the most sad, despairing, hurtful, pathetic view… to see Chris like that. I tried to fix him up, the nurse told me she had just fixed him up… but he bends back due to the spasticity. His arms and hands also show no improvement since the Botox.

Chris was less spacey although not as focused as he used to be. He followed me around, made eye contact but he is not yet as alert and aware as before. The hospital told me Chris has no seizures or infections, he is clinically stable. I have this theory that the Ambien/ Zolpidem was working towards keeping him very sharp and alert and its withdrawal now is putting him back where he was… I will not fight with the doctors on this one as they already made very clear they need clinical evidence of the effectiveness of Ambien/ Zolpidem to keep this medication going. Either that of the HBOT and the extra oxygen he was receiving was keeping him more aware/ alert… It will be impossible to know.

My mom did everything for Chris today: gave him his supplements and apple, massaged his shoulders, and fixed his hands… F, the lady who massages Chris hand, wrote: “I found that Chris has not been himself this week very drowsy although this is good for massage as he does not resist or is in any pain but he has been extra tired.” Indeed, he was falling asleep after the supplements...

My mom was crying when we left, it is so hard to leave him like that, we feel so much for Chris. That is the toughest part, we can “deal” with the grieve of the loss, the things that could have been, the unfairness of a child growing without his father, so many things… at the end, loss is part of life, as much as it hurts, it can be “handled” some how… what I can not stand, what is unacceptable, what is barbarically unfair and cruel is the way Chris is living his life, the way Chris is hurting, his physical deterioration… we are so tortured by these thoughts… I will stop here because I have a lot of anger and hurt inside me.