Morgan and James: TTTS Survivors

Yesterday we took a trip to Alder Hey to see a neuroscience team regarding a possible surgical intervention for Morgan. We are considering an intrathecal pump, which would deliver small doses of one of Morgan's existing medicines direct to the spine. Unsurprisingly, this is a decision we're taking time over. At the time I write this, the Wikipedia entry is somewhat out of date and paints an unduly gloomy picture. All the same, there are risks associated to the procedure that we have to take into account.

It has been an eventful year so far.  Probably too much to list and certainly too much for my frazzled old grey matter to recall.

We went on holiday again!  Same place as last year - Mitchelland Farm in the Lake District.  We went with a couple from church and had a really lovely time.

Actually this is yesterday's news...

Regular readers will have noticed the changes, the most significant being a complete redesign of the site.  This has been a few months coming but was worth the wait.  (Well I think so, even if you don't!!! )  Some new things to look out for in particular:

The new website for the boys is almost ready.  In fact this blog entry will only appear on the new website.  I'm very excited about it (bless).  It has loads more features and is presented in a more attractive format.  But more than that, (and here's the really important point,) Sharon can now easily post her own blogs.

Let me know what you think of the new site and what changes you'd like to see.  It's relatively easy for me to make changes to this new site and I'm open to suggestions.

It does seem like an update is long overdue. The quietness on our part is a fairly good sign - there hasn't been a lot to report so far this year. A couple of hospital visits for Mo but not a lot else.

Just adding my own words to Rob's blog this week, hopefully to make things a bit clearer.

Firstly, as regarding James' MRI scan interpretation we don't actually know very much at present. The news on Tuesday came as a shock, mainly because we went in for an eye appointment and came away with questions about his brain. The consultant obviously assumed I knew and at the time I said nothing as I was so shocked, plus it is not his job to explain brain scans to me!

Quite a bit has happened in the last couple of months. As usual, some good, some bad.

Mo was becoming increasingly distressed during his morning journeys to school, exhibiting twisting behaviour that was a new (unwelcome) development this autumn. After a lot of to-ing and fro-ing, we eventually concluded that his new epilepsy medicine was to some extent to blame. To cut a long story short, we decided to wean Mo off that medication. We immediately saw some very positive results. Mo began travelling more comfortably again and the twisting reduced a lot.

Mo's home.

He's happy. The dirty stop-up awoke at half past midnight and spent the rest of the morning grinning at the nurses. (Think he had some kick-back from the sedative.) Not sure where we're going now in terms of medication but hopefully his new consultant will have some suggestions. I'll post more later.

Just a brief one. We had to admit Mo to hospital - his seizures were worse than usual. He had a special medicine to help stop the seizures and was then transferred to the high dependency unit (nothing to worry about) for close monitoring overnight. Poor Mo. Not a good day for him - or for Sharon.

I'm still working on a large upload of photos dating back to January. There's a fair bit of work to do but I'm on the case. Bear with me!