Tuesday, 28 October 2008

Great to see Rich back on the Blog. I feel like I have completely monopolised it since Ross was born, but it was set-up to record our journey from deciding to climb Mont Blanc up until when we actually do it, and what’s happened over the past few months is now completely intertwined with that. As Rich mentioned the coming months will be tough, especially for Rich and Kirsty with the 10th anniversary of Archie’s death. Christmas will be very different for us this year; I think we’ll be comparing it to what it could have been, but at the same time we know we have to make the most of it.

We had another consultation with the doctors in Necker Children’s Hospital yesterday. For some reason it seemed to be more positive than the previous ones, but I think that was more to do with having a different, more enthusiastic and optimistic doctor, rather than due to any breakthrough with understanding Ross’s condition, as overall Ross’s condition in much the same as it has been for the past few months. I must admit though, despite the fact my French is pretty good now, I really struggled to understand a lot of things the doctor was saying – I think it’s just that I don’t have the energy available…

The doctor was very pleased to see that Ross has now been seizure free since he started the steroids back at the beginning of July. The team there honestly were not expecting them to control the seizures at all. Anyway, they are controlling them for now and we are extremely thankful for that. Last week’s EEG results show that his brain activity is still completely erratic, although again we are pleased to see that it has not gotten any worse.
We still don’t think Ross can see anything (although we need to see a specialist opthalmist for confirmation), but we do find that sometimes we can soothe him now so hopefully that means he is aware of us on some level. But he is having a terrible time with lots of wind after his bottles and constipation due to the cocktail of drugs he has to have (cue even more drugs to counteract the effects of other drugs!!!). This results in him being very agitated a lot of the time he is awake and us getting not a lot of sleep. I know all babies wake at night a lot of the time, but there’s normally an end in sight…

So all in all, still very tough, tiring and frustrating. Fin is our little angel though and is keeping us going.

Quick update on the training; I have been for 2 runs in the past fortnight, including one where I got lost in a hilly forest in the Black Forest during a work trip. Definitely not enough to get me fit enough to climb Mont Blanc, but there’s plenty of time, isn’t there? Plus there’s the Wii… I see Rich think’s he’s Rocky; maybe we’ll get the gloves on some night and see who’s left standing. Charity boxing anyone?

By the way, assuming you’re starting to think about Christmas already, why not buy your Christmas cards and help a great cause at the same time by clicking on this link NSE Christmas Cards.

And finally, many of you will know that I’m a bit of a rugby fan, and as such I was touched by the story of Daniel James, especially when I read Brian Moore’s article which he wrote for the Telegraph; to read the article, and come to your own conclusions on it, click on this link Telegraph.

Friday, 24 October 2008

'Tis the season...almost

The nights are drawing in, the glass is falling and there's a storm a-brewing. Winter is on its way and with it (hopefully) snow, ice, coldness and general brrrrr. Let's hope for a good season so I can give Karl another taste of winter climbing, complete with hot aches, chapped lips and wind burn. Lovely.

There is another feeling that this time of year brings - particularly when the clocks go back. My body is conditioned to associate this change in season with Archie's death. He died on the 14th of the November 1998, a day that also coincided with a light dusting of snow. Hence I can get a bit miserable at this time of year - it is not Seasonal Affective Disorder, but is nonetheless a bit sad. 

This time round of course it will be 10 years, which is a long time and feels like it should be some sort of milestone. It doesn't stop hurting, but luckily for us, the time has been filled with plenty of moments of joy, courtesy of Kirsty, the children, family and friends which combine to make the periods of hurt less frequent. Without this, time would indeed play heavily on me.

We have been to see Karl and Clair, Ross and Fin in Paris a few times, Kirsty and Maddy have another "girl's only" trip booked in November and we hope to see them this side of the water before Xmas. The house next door to ours was up for sale a while ago but I couldn't convince them to buy it - something about Nottingham's reputation for gun crime, I think...either that or Karl doesn't want to share the Wii Fit. I feel like I'm in Rocky IV - he's got all the technology of Ivan Drago, while I am out running up and down hills in the cold. I seem to remember Rocky gave Drago a good shoeing...

Wednesday, 15 October 2008

No convulsions, but no development either...

So here we are mid October and Ross is already 5 months old. Thanks to the combination of anti-epilepsy drugs and steroids he's getting every day, he has now not had a seizure for 3 and a half months which is great, but as he gets older and bigger it's becoming more and more obvious that he's not really developing mentally.
His eye patterns are random and he doesn't respond to us, which is extremely hard, he has no sleep pattern, his feeding is a bit erratic and he now pretty well hates getting his many syringe-fulls of medicine (3 times a day...)

Summer being finished he picked up another cough - cue another rushed trip to see the doctor, antibiotics etc. I wonder how many times we'll have to do that this winter? Me being back to work makes it even more difficult, especially for my wife, but it at least gives us some sort of normal weekly pattern.
And whilst the medical care Ross has received in hospital in France has been great, we now see a huge gap between the help we know we'd get in UK and what's available in France. You don't see many disabled kids around where we live for some reason...

We've a few hospital trips coming up, next week for another EEG to monitor Ross's electrical brain activity, and one the following week with his doctor at Necker. Hoping for some (any) good news!

We have had some ups too, Fin singing for Ross (see video above), Fin's 3rd birthday party was great, and then we had one night off when we left my parents with the boys and a mountain of drugs for Ross, and we headed to London on the Eurostar for the National Society for Epilepsy annual fundraising ball. We were joined by some of our great friends in London and whilst parts of the evening we found emotional and difficult, it was great to see everyone, and to do our bit (including some ridiculous bidding in the auction) towards the NSE raising £75k that night. Thanks Max Clifford for your support and encouragement!
Rich has been frantically jogging/cycling apparently and we're looking at options to get some mountain training in over the winter. Easier said than done. At least I'll keep up those late night training sessions on our new Wii Fit...that's bound get me up Mont Blanc!