Back at the Mars Bar

We spent the day at the Marsden today and Anouk had a grease and oil change as well as being prepared for the drug trial tomorrow.  She has deteriorated considerably since they last saw her and we were given the option to withdraw from the trial but we feel that we are on a path and that to make an alternative decision is too challenging for us emotionally, we also know that although nothing can be promised, the drug is unlikely to make Anouk unwell and that she will be very happy wherever she is at home or in the hospital - so it still feels like the right thing to do for the slim chance that it may help her a bit.  Anouk sang her way through the day, she was confident and relaxed and let the various medical professionals - and she saw an awful lot of them - do their stuff without fussing or complaint.  She is absolutely remarkable.  


We saw a speech therapist who looked at Anouk's swallowing - which is still good and she gave us some advice about how to manage Anouk's inability to open her mouth more than 8mm!  and some stretches which involve roaring like a lion and chewing like a giraffe - Anouk liked them...  The dietician is giving us some supplements - although at the moment Anouk is still managing to pack her food away despite the lack of space between the teeth.


We also saw an eye specialist at the eye hospital - as her eye looks pretty awful - and so we will start taping Anouk's eye closed at night and giving her more regular thick eye drops - which hopefully will help her avoid any more infections.  It appears as though she does not have any sensation in her eye which does not help as she does not see the point in treating an eye that for most of us would be very uncomfortable but for her is no problem because she can't feel it.


The blood tests and ECG were all normal.  As it is the 4th July in America and everything stops, the trial will start tomorrow once the drug company reopens and gets her paper work.  She will have the drug over 2 hours and then stay in for 24 hours for observation, we are going back for a blood test on Saturday and then will be checked each Thursday for the next couple of weeks before we get the drug again after 3 weeks.


Anouk spent a lot of time entertaining the clown doctors today - or maybe it was the other way around.  She has always loved them.