My mom and dad went to see Chris only once this week on Tuesday. My mom said Chris had had a shower and his arms were very loose. That was all from her report. Chris does not change on a weekly, nor monthly basis as everyone knows. I try to re-assess and think of his condition in blocks of 3 months, and hope that he makes changes on a quarterly basis.

Gabriel got very sick on Wednesday night and after a visit to the ER he was diagnosed with an ear infection. So we kept him home for the rest of the week. He is completely fine by now but seating in the emergency room with him drained and weak running a 104o F fever was not really fun… Gabriel is the core, centre and foundation of my life and the only source of joy … I could not conceive my life without him...

I love the health care system in this country. As you check in the hospital (a great hospital by the way) they ask for the date of birth and name (as opposed to insurance card or credit card from my NY days). The wait to be seen is as long as, but the doctors do spend the time with you, they are kind and you leave with all the medication you need (antibiotics, fever reducers) for FREE. There is no bill – ever. Chris and I have been to emergencies rooms twice in NYC. We both had very good private health insurance and got such crazy and insane bill afterwards for stuff not covered by insurance and/or co-payment. In my last year there, I went for my annual check up, later I got this bill because they said they stop taking my insurance company and I owed them some crazy bill. I refused to pay and they put me through collection. I threaten to sue and then they stopped harassing me.

Anyway, this whole episode with Gabriel and the amazing decision of the PCT to help me with Chris one-on-one carer only confirms over and over that I made the right decision about not taking Chris back to the US. Actually you only need basic common sense to realize that that was the only viable option at the time as he did not even had any type of health insurance coverage.

Chris is being phased out from his various dietary supplements. Cod Liver Oil which provides DHA/ EPA was withdrawn last month. Glyconutrients/ Ambrotose was stopped 2 weeks ago. Plankton should be running out this week. And blueberry juice by the end of the month. He got some Magnesium supplements that should last for 2 more months but afterwards he will not be on any vitamins, supplements, anything.

I am re-assessing and rethinking my approach to Chris’ care and the withdrawal of his dietary supplements is basically from the simple fact that I got no clue and no proof that they do or they have ever contributed to any of his progress. Actually it is so hard to know what it is really working or not – OR whether he would improve regardless of anything extra you do.

Anyway, we are off to the hospital soon for our weekend visit and hope we have a good day with Chris.