Operation Cavernoma Removal - day 0 + 3

 Goodness me, this is a long ol' week. Just three days since Amy went under the knife, and it seems like forever ago. We are all getting weary, and to be honest, the one who seems to have the most energy is Amy.

She had seen the doctor before we arrived at the hospital and all seemed to be ok. She has been complaining of numbness in her legs but the doctor thinks this is completely normal and is likely to be inflammation caused by the surgery and nothing to worry about, but he will make a note for the surgeon, just to be sure.

Also, as we heard yesterday, Amy has 'Apraxia' which means, and I quote the dictionary definition, 'the loss of ability to execute or carry out skilled movement and gestures, despite having the physical ability and desire to perform them.' She also has Apraxia of Speech which means that she has trouble saying what she wants to say correctly and consistently. It's a fancy name for not being able to get her words out all the time. We have seen that she can say a word perfectly and then she'll try and say it again and it's gone. But she'll get there.

When we arrived at the hospital we found a very excited Amy on her bed. She immediately grabbed her phone and held it up to us proudly. There on the screen was a list of random words. It turns out, they all mean something to Amy. Things and people that are important to her, including the names of every member of One Direction. Go figure. She had been awake since 6am, and every time she thought of something, somewhere or someone, it went on the list. She read us the list and almost got all the words right. It was so flipping heart warming to watch. She was so pleased with herself. One thing we can say about Amy. She will keep trying until she is exhausted, because she is definitely not a quitter.  

Some words on the list were difficult. Like toast. It took her ages to get the word 'toast'. She repeated it over and over, 'toast toast toast toast toast', and then she couldn't say it again so she kept trying. We had froast, foast, coast; well, you get the picture. But she did it. Toast. She could now say what she wanted for breakfast instead of cornflakes that quite obviously aren't Kelloggs. This really is relearning how to speak and in the words of Amy, 'We'll get there'. Her new mantra.

One thing I have to tell you about Amy. When she was a baby, learning to talk, she would watch people's mouths and try and mimic their mouth movements. Amy spoke incredibly articulately from a very young age and her vocabulary was well developed. She worked hard at talking, even as a baby and she never used baby talk, she just went from gurgle to chatter. Now she is doing the same thing all over again. Watching people make words with their mouths and trying to mimic. She doesn't always get it right but she's getting there. It's not every word, In fact at times she talks completely normally and then suddenly she will start to stumble, and struggle on a word. Then she'll stop and work on it, until she gets it. And only when she's got it will she move on. Fastidious. That is what she is. Fastidious. (Though I'm definitely not asking her to say that just yet, that might be a step too far!).

As we were all there today, we took it in turns to spend time with Amy. Issy and her mum, Tamsin got there first. Tamsin then left Amy and Issy together for a while, to have some 'us two' time. Lewis, Char and Phoebe arrived as well and as it was lunch time, we decided to head off and get a bite to eat.

As you may have read on Tuesday's blog post, I had seen, on the way to the hospital, a falafel shop. We decided it needed to be tried so Paul, Lewis, Char, Phoebe and I headed off to try 'The King of Falafel''s falafel. Issy and her mum were staying in the hospital and we agreed we'd bring them back a falafel on our return.

When we arrived at the restaurant, we were greeted with a huge smile by Faez, The King himself.

What a lovely man he is. He's a Moroccan Syrian but he's been the Falafel King in London since 1992 and before that made Chollah and beigels in the Seven Sisters Road. He has five children, three girls and two boys and he is obviously very proud of them all. Yes, we were there a while and he was very chatty!  But, if you are ever in Judd Street, I implore you, do not go past his restaurant without stopping for a bite to eat. He cooked the falafel fresh, the bread (we had the Morrocan bread but there was a Lebanese option too) is freshly made, and unbelievably delicious. And he's very generous with his portion sizes.

I got so excited about my scrummy grub I forgot to take a picture before it was almost all gone.

We left Faez and went back to the hospital to spend some time with Amy who was still very chirpy and enjoying the chit chat. As time went on, and after a pot load of pills, she began to wear out a bit, so we all decided it was time to head off and leave her to rest for another day. 

We were getting our stuff together when Paul told us he couldn't find his backpack. We searched high and low, including under the bed, and eventually realised he'd left it in the restaurant at lunchtime. By this time it was 6.30pm and the King shuts at 6pm so there was very little hope of getting it tonight, especially as the phone wasn't being answered when Paul tried to call.  We trundled off towards Kings Cross, via the restaurant just in case, and low and behold, the lights were on and smiley Faez was waving.  Sure enough, he had Paul's bag, and assured him that he hadn't opened it, bless him.

A very relieved Paul, along with Phoebe and I carried on to Kings Cross, Phoebe heading to her home and Paul and I went to his.

We are really tired, but today there was more improvement, every day a little more progress which is just fantastic. Amy is a superstar and we are all extremely proud of her. It's wonderful that she can laugh with us at her mistakes and inspiring to watch her try so hard to get things right. Who knows what will happen in the next few weeks, but I'm certain things will improve greatly, Amy won't have it any other way.