"Summer Time"

We got in for the scan yesterday when one of the first things they said to us was "Did they tell you you will probably be staying the night?" "No" I replied, so I am now sat on the couch writing after sleeping in trousers and a shirt. I probably smell as well but Kathy's being nice as it was me that had the pleasure of another sleepless night on Ward E39.

This MRI was a little different yesterday as they had to sedate Summer to stop her wriggling all the time and ruining the pictures. I'm not surprised they wriggle as its very loud in there. To sedate her they have to give some nasty medicine which before hand they told us was always difficult to give as it tasted so bad. most babies spit it out and cause all sorts of trouble. Of course Summer being a little different to most sucked the medicine out of the syringe before they had a chance to push it in. She will eat just about anything we are finding out!!

The MRI results showed that, as we had thought, the fluid on her brain has increased but not by a huge amount. They have decided to operate either this Thursday or the following Tuesday to relieve this pressure build up before it gets any worse.

They told us there is a choice of procedure. The obvious one was the shunt but this has alot of complications with it being a pretty major operation with a high risk of infection. The other is putting a hole somewhere which provides another path for the fluid to flow back down the spine. This is simpler and without having to put any hardware in the head the infection risk is much lower however the op is riskier and the success rate is only about 60%. Also this is not suitable for every baby depending on the location of some pretty crucial veins and artery's. We will find out today which option they are going for, We hope she will be suitable for the procedure without the shunt.

We have been getting alot of information on all this from the ASBAH (Association of Spina Bifida and Hydrocephalus) website, www.asbah.org.

I must fill you all in on my weekend adventures as well. I flew up to a good friends wedding on Saturday in Glasgow just to arrive a couple of hours before the terrorists drove into the airport. Of course my return flight was cancelled but I was lucky enough to get a lift back with the very generous Bride and Groom in their car. We drove from Glasgow all the way down to Luton, then Stanstead then back up to Leicester. I'm considering my self lucky however as I'm sure there are some still stuck there as I write!

So we will be back in hospital for about a week from this Thursday probably. Please pray that Summer will get the simpler operation and that it will be a success. And of course that her brain can grow and she can develop as well as possible. We have decided that all her mile stones instead of happening at 3 months or 5 months will all happen in "Summer Time".

Finally, it is amazing to see all the other family's there and how they cope. 1 family hasn't left since we were first there, another is on '3 weeks in, 1 week at home' cycle, another has been going there regularly for 5 years!! Yet still the ward is such a happy place to be and the staff are all great. Please pray they will continue to help so many families in a much more desperate situation than ours.