It is now two weeks since the last operation that Ladan had. Doctors will tell you that families see things that others don’t see, sometimes they are things that the family pick up because they are there all the time or because the patient responds better to them, and sometimes it is because the family want to see something and so what they are witnessing is coloured by that desire. To avoid building up unjustified optimism I have tried to avoid reporting things that I am not certain, from a scientifically sound basis, have really happened. Where I have crossed this line in the past I have referred to things that Ladan “seemed” to do rather than did do. In order to give a fair picture of where we are now I feel the need to cross this line almost completely because to not do so could lead to unjustified pessimism about a lack of progress.
There is one very clear sign of improvement since May 3rd and that is in Ladan’s left eye, most people move their eyes upward when they sleep, Ladan’s left eye was not doing this, it is now. Other than that the signs are all infrequent and, what makes them harder to report as true events, they are short lived moments. Back in December successful attempts to communicate were infrequent but they would last several minutes, sometimes up to 15 minutes, so there was time to check that Ladan was understanding properly and giving appropriate responses before proceeding. When an encouraging sign lasts for less than a minute you can’t replicate it and you can’t therefore confirm it to be what it may appear to be. However, there have been a few of these short lived encouraging signs that did not appear to be there before, in some cases not for a few months and in some cases never before, and there have not really been any negative signs such as decreased awareness… a good sign of awareness that has always existed is that Ladan will often open her eyes when I say her name to her face, or will not flinch if I touch her face after telling her what I am about to do but will flinch if I touch it without announcing my intentions, or Ladan’s tendency, even if she is asleep, to show more eye movement when I am talking to her than when the room is silent… if these (and a few other) signs were to go, as they did on one occasion when a scan showed that she needed to go back to theatre, that would obviously indicate potential decline.
So, take the following with a small pinch of salt because I can’t promise you they happened, but they seemed to happen more than once in the last two weeks and they are being witnessed by those of us who have been by Ladan’s side for more than six months now so we obviously know what movement’s Ladan tends to make, such as moving her mouth around a bit before trying to swallow) that a less seasoned observer may mistake for any of these: Ladan has opened her mouth and opened it wider on request, her limbs -and most particularly her head – have been moved with increased range and control, Ladan has made mouth movements that appear to be attempts to speak, including making the shape for the word “No” in response to a question, and Ladan seems to be focussing on the people around her – or at least looking in the correct direction for them – increasingly when she seems awake.
The neurosurgical team have put in a request for another CT scan and everyone is hoping that it will show the new shunt has been working and Ladan’s ventricular system is either back down to size or on the way there.