Well I didn’t bother entering anything yesterday for a couple of reasons – one being felt a bit low and two I thought Ian may write something; and he is so more eloquent at these things. He always seems to put in to words perfectly what I am thinking but am unable to put down on paper.
We saw Dr Philip yesterday, it was a routine appointment that had to be cancelled in December due to Jude being in Intensive Care.
Dr Philip went through the mir report with us, he showed us the back of the brain, which is good, then the front which is ok if not a little small. Then he showed us the left and right side of the brain which on the pictures seemed to be just dark. He explained that there was total damage to these parts of his brain. He also explained that it was very unusual for this sort of damage to occur on both sides and is often seen on one side but not both. He explained that the brain had developed normally during pregnancy and the damage happened in the third trimester, and was caused by the oxygen supply to that part of the brain being starved. That or, the possibility of the blood vessels being small short or weak.
I have long wanted Jude’s MRI explained to me in terms that I could understand and seeing the scan gave me this information. However, seeing the information in cold black and white somehow made it real, concrete, permanent. So yesterday for me was not that good a day for me.
Dr Philip is very keen to try the Ketogenic diet as soon as we can, however we need the fundoplication doing ASAP as Jude is in a real bad state with reflux.
If that didn’t work (however it has a 40 – 50% success rate) there is an option to cut the chords in the brain that enable each side to ‘talk to each other’ what this would do it to stop a seizure spreading throughout the whole brain. And I’m sure you can guess how this is done.
Also we are going to start trying some new drugs, one at a time, to see if we get any response.
Coupled with all of that information being taken on board in my own grey matter, had an email back from the owners of the house we really loved and lost, saying that they were really sorry that they had had to accept another offer, but wished us all the best for the future. I think that was the final straw for me. Roll on good times, please.