I haven't been to the hospital during the past weekends - given the incredible long list of things that require my attention on Sat & Sun (mundanes things such as laundry, cleaning, shopping for food, cleaning, taking the week's garbage out - so heavy! - keeping bills in order AND Gabriel's social and entertainment life full of birthday parties, swiming pool at the club, park, museum, zoo's). BUT, I managed to go see Chris this afternoon during my lunch break (thanks to the credit crunch which greatly reduced the volume of work, and the fact that in Europe so many people just take the entire month of August off slowing things down in the office). This may be the way forward as long as I can get away with it.

Chris looked good. I arrived in time to feed him his lunch. A normal meal with two British sausages (not soft, just normal), mashed, beans, peas, with a yummy looking dessert. Chris eats well. Actually Chris has been eating extrenelly well for over a year now. He has actually put some weight unnecessarily and couple of weeks ago the manager in charge and myself took upon ourselves to stop the 200 mls of supplement he was getting via PEG during the night. His dietician has not changed the guidelines in 11 months - but we got people chasing her to she can officially update the guideline.

There is actually a lot of chasing up when it comes to Chris' care - which I will spare the boring details from everyone ... they are normally issues related to his care and although recognizing the challenge of providing good care for someone like Chris, I have had in the recent months a couple of very stressful situations followed by meetings, calls, emails, etc... There is goodwill from the hospital management to try to address all the concerns and issues, but emotionally dealing with these things have been a complete strain on me... and I guess for the combination of all the things in my life, I have been physically sick at occasions, with a doctor visit last week and another one this week to rule out anything more serious... Sometimes my heartache does literally translate into a painful knot in my stomach, throat, heart and the symptons can be very scary and last for a couple of days. I need to take it really easy as the thought of anything happening with me while home alone with Gabriel has terrified me enough to have him fully trained in dialing 999 and spitting out our home address... He is such a sweet trooper - an absolute joy and the one thing in my life that puts a massive smile on my face.

Chris has a wonderful and loving one-on-one carer H who spends an hour with him everyday doing lots of communication and PT exercises. She is always very positive and is adamant at Chris' ability to understand and grasp more from the outside world. She is actually his greatest and biggest advocate (clearly more than me lately as I can not see massive changes on him). Other staff has also reported that Chris communicates by nodding and shaking his head. Chris' private PT has also given positive feedback about Chris' ability to follow certain commands within the limits of his disability (i.e. tapping his feet on command). Unfortunately on the SALT front, things have been patchy again and I have no clue what's going on there.

So, this is a bit of what's going on with Chris and us. Gabriel is happy as usual. He is a demanding, curious, and energetic sweetheart. He is always bombarding me with questions and recently has declared that we should make "joint" decisions - that he also wants to partake on decision making process (and not only me + the nanny making all the decisions for him). I will take him to EuroDisney next weekend for the bank holiday so we are both very much looking forward to it. Off course he does not question decisions such as going to Disney... :)

Thanks for checking on all of us.