Interesting development

Jo and Alex came to visit this afternoon with a yummy chicken and leek pie. We played Spy Alley and I forgot to take a picture - again! Ina, my cousin responsible for the beautiful roses delivered to the Westin on Rosie's birthday, popped in with Krispy Kreme donuts too. Not sure if they are allowed in hospitals.
Later, Michael, David and some new Italian (maybe he's a stand-in for Miika whom we haven't seen for a couple of days) came by for a very interesting chat. Michael said Rosie's MRI looked great. He said they were not sure whether the thing that seemed like residual AVM in the angiogram is actually dangerous for Rosie or not. It does not look like a classic AVM with a tangle of vessels in the middle and an enlarged early-draining vein but it does have an early-draining vein which is not enlarged. Early-draining means that the timing of the blood flow into the vein is faster than normal - in the case of an AVM, because the blood does not pass from the artery through the capillary bed first to slow down before entering the vein. In a nutshell, Michael said they don't have answers yet but he wanted us to know what they were thinking about and researching. He said there is some French literature which suggests that, particularly in younger women, there may be a tendency for adjacent arteries and veins to behave in this AVM-like manner after a haemorrhage has occurred (Rosie's AVM had bled already) but they were not actually AVMs. In his 630 AVMs he has not come across this particular variant and even in the international literature it is not common so they will continue to discuss and research.
He suggested that it may be that what's left in the thalamus may not present a danger of bleeding in which case it would not be advisable to treat it with radiation. That is, we wouldn't want the treatment to be more of a danger to Rosie than the thing being treated. It's possible that it might be something we just watch at this point, possibly checking again in a year with angiogram to see if things had changed.
I asked if I could see Rosie's scans as it would be helpful to have a visual picture of what he was describing. David said he could come by after surgery tomorrow afternoon with his computer and show them to me.
When they left and I explained to Rosie what I took from Michael's chat, she was pretty chuffed with being so special. I told her she was making a contribution to medical science and that Australia's finest AVM specialist was learning from her case. She laughed maniacally and got quite silly.
















Merlyne made us yummy spag Bol for dinner and David came too so we adjourned to the cafe for a change of scene.
It looks like we will be leaving here in about a week, which means that Rosie will be able to have her staples removed here - less hassle than having them done in Melbourne.

Day 15! Relaxed morning and MRI

Rosie texted me for the first time this morning since before the 2nd surgery. It was just one word: breakfast! but it was good that she was confident enough with letter and word recognition on a keypad. Her hand writing is fine but she hasn't been texting friends a) because reading theirs is laborious and b) because she loses track of what she's up to and then can't read what she's done so far.

Breakfast comes at about 7:45 and we've now got the nurses well-trained to not wake her up any earlier unless there's a pressing medical reason which there shouldn't be for the rest of our stay. She always has the All Bran with cold milk and I have everything else, which this morning was porridge followed by scrambled eggs on toast. Yum.

After lolling about till 9:00 or so, I persuaded madam to rise and shower. She scored a new black Tshirt which Jessye forgot to take with her. I'm quite enjoying the hair-brushing and so is Rosie because we're both intrigued with what will happen to it over the course of the next 3 weeks till she is allowed to wash it. She is enjoying the feel of her new spiky bits growing on top.
We went walkabout all over the place then went to the cafe for hot chocs and a game of Backgammon. Rosie wanted to see how her hair was looking on top so asked me to take faraway and close up photos.








Back in the room we did some of our language homework, focusing on reading. The naming of objects has improved a lot and word recognition is making slow but noticeable progress. It's a fascinating process for me to see the various aspects of how we know a word sometimes used in isolation or in succession by her brain to get to the word in the end. Sometimes Rosie will see the meaning of the word before she can read or say the actual word. An example I mentioned to Peter on the phone was particularly cute. She was looking at "lovely day" and said "top o' the morning!"




At 12:15 we walked down to the MRI room. Rosie was in a very playful, cheerful mood, dancing around the waiting area.










Her friend, Joey, told her that she likes the blog and so does her mum so I now have Rosie's blessing to take photos of her without being the annoying mother. Rosie again wanted me to take a photo of her growing spiky bits.



She hopped up onto the MRI bed, was slid in and I had time to do this blog.








She's out now and we're waiting to be walked upstairs which Rosie thinks is crazy since we roam all over the place willy-nilly.