Thursday, 25 November 2010

MRI Results

This afternoon we had a meeting with all the professionals associated with Maggie's care. It seemed to consist mainly of (dread word) diarising and was, for that reason, a little irritating. And a little pointless.

We were also given the results of Maggie's MRI scan.

The first thing to say is that we need to have another session with Dr Bem to discuss them in detail. They were essentially read out to Shannon while I went in and out the room, trying to quieten Maggie. There was little attempt to translate the results into plain English or for them to be interpreted into something that made sense on a future prognosis level. If you see what I mean.

So there was talk of white matter and grey matter and how Maggie's white matter is very severely damaged. This is the stuff that affects movement and limbs. It is consistent with the damage that was shown at birth.

Her grey matter, while less affected, is, unfortunately, somehow dependent on the quality of her white matter and how communication between the two takes place. For example: while she can clearly see, it could well be that she has little understanding of what she's seeing.

So really there has been no improvement. No magical change. She is a severely brain damaged child and will always be that way. Which is why she is now officially diagnosed with cerebral palsy.

As always, we were unable to get simple answers to simple questions. And that's because, really, there are no simple answers. Every child is different. It's what we're told all the time. While that's frustrating it does, of course, mean that there is some hope that she will be able to defy certain expectations. Or not.

We can only hope.

So far, however, her development has been poor. In terms of things like head growth and general growth. Whereas before we were pinning our hopes on helping her brain to grow through nutrition, it's likely that her brain isn't growing because that's not what her brain is wired to do.

So what we have, in essence, is what we always knew and what we always feared. Of course we were hoping that there would be improvement with her brain. Who wouldn't hope for that?

So in all, it's a very sad day. Which has yet to properly sink in.


  1. Gutted for you all, hugs xxxxxxxxxxxxxxxxxxxxx

  2. I am saddened and lost for words. Noboy knows what you are going through but you two, however I can guess and it is not a pleasant guess. I really wish there was a magic wand I could wave, some advice I could give that might make a difference, but I know there isn't. I am just sending sincere love and hope.

  3. That's rough, really feel for both of you.

  4. Hello, I am an avid reader of your blog.Cried many times,admired more.I have a ten year old son who also has cerebral palsy and this post hit me..I remember our day like yours as if it was yesterday.In our hearts we knew but confirmation was like a horror movie that kicked us in the stomach,in slow motion the world stopped.Never this never that how we bawled with grief.I cant say nine years on life is great because its not but its better cos its our life and we know how to survive in our fantasy happy life,if that makes sense!I wish you and your family peace and strength and please keep writing.

  5. Afraid I can't add anything to what Andy and the others have said - I just hope our thoughts bring you some consolation and the strength to carry on. x

  6. Very sorry to hear it Paul. Very tough day for all of you.

  7. Much love to you all, so sorry xxx

  8. Just to reiterate what the others have already said, thinking of you all. You are great people and managing brillianty even though you may think not. Stay strong.xx

  9. I'm so very sorry it wasn't better news, you must be devastated, you'll cope in spite of it but I so wish the results had been more optomistic xxx

  10. I'm so sorry to read this, I was hoping too, for you all, that the scan might give you some good news. Come and see us next time you go to Quidenham? Lots of love Caroline, Chris and James

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