'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...

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!

"What do you mean you're going back to work Dad?"

1st September saw me back to work and Fin starting nursery school (30 x 3 year olds, one teacher, all in French...) all in one week. Quite a shock to the system and a change from the little routine we'd got ourselves into, but we need to have some sort of normality in our lives and that means work and school.

Ross continues to grow - he's pretty much filling 3-6 month clothes now - but his movements are still random and his eyes don't fix on us at all. He seems to like the baby massage which we were shown how to do by a friend in NI, and he loves his baths where he just chills out. We need to find more stuff he likes...

Amazing sums of money being donated on http://www.justgiving.com/archiesmountain where over £8200 (plus £1500 Gift Aid) has been raised to the National Society for Epilepsy on top of the £5150 raised for CLIC Sargent. I hate to single out anyone who has sponsored us, but we really must say a huge thank you to Simon, Emma, Darcey and Dillon for their very kind gesture of asking guests at Dillon's Christening to make a donation of sponsorship rather than buying presents - over £600 raised! Also to Clair's Auntie Anna who raised money by hosting a Virgin Vie party (whatever that is - I'm sure there was wine involved...). Thanks also to Simon N and Joao C for your very generous sponsorship.

Trying to stay optimistic - those of you that are praying for Ross, please keep doing so.

Summer tour of wet UK (and first chest infection scare...)

At the beginning of August we met Rich and his family when they came to stay around Paris. It was great to see them and we're all looking forward to actually doing the trip we planned together for this year at some stage next summer.

Ross then spent the past 2 weeks with us staying with our families in Scotland and Northern Ireland. It did stop raining a few times...

During this time our families got to spend some quality time with Ross, but going hand in hand with being in contact with lots of people goes the increased risk of infection due to Ross's immune system being reduced due to the steroid treatment. As a result we did spend some time with doctors and in hospital, but that was a 'blip' on an otherwise enjoyable trip, including one sunny day on Portsteward Strand beach!

My fitness training has been a bit erratic but having seen the total amount on archiesmountain.com increase to over £13,000 including Gift Aid I'm determined that Rich and I will climb Mont Blanc during summer 2009.

The total has been increased dramatically thanks to £1100 raised by my Auntie Kathleen from her 60th birthday donations and £325 raised by my future sister in law Leanne and her friend Julie from their own half-marathon efforts. A huge thank you to them!!!

Welcome to Holland

Ross will be 3 months old this week, 3 months in which so much has happened, and yet in Ross's little world so little is happening. The combination of anti-epileptic drugs and steroids seem to still be keeping his convulsions under control which is great, but at the same time it's becoming more obvious that he is not developing mentally.

We went for another EEG scan of his brain activity last week and as soon as we saw the patterns on the screen we knew his brain activity was not improving. The doctors confirmed this and acually suprised us somewhat by talking more about how to ensure Ross's limbs don't cease up etc as they now don't expect him to develop mentally. This is obviously not what we were wanting to hear, but it's amazing to think that we've got to the stage now that we can hear such terrible news and remain calm...

Our friends and family are being incredibly supportive, but at the same time are struggling to understand how we feel. We find that these words written in 1987 by Emily Perl Kingsley based on her own experiences sum it all up very well.


WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

http://uk.youtube.com/watch?v=Tehcysu03EI

Little progress...

The past 2 weeks have passed in a bit of a blur. We've been giving Ross his drugs, feeding him and keeping him comfortable. Still no more convulsions, which is great, but during our last hospital appointment the doctors were concerned to see Ross's movements when he was awake. They confirmed what we had suspected following his last EEG, that his brain activity is not normal and that his brain is not developing.

When he is asleep you could swear there is nothing wrong with him, but awake it's obvious that something is wrong. We still have no confirmed diagnosis beyond a rare type of epilepsy and it may be that we never get a diagnosis.

It's been difficult, especially as Ross isn't responding to anything he sees and so is not responding to us. Fin continues to be great and is a very doting big brother, and we're trying to have as normal a summer as possible.

We should have been heading down to Chamonix tomorrow for our family holiday and for Rich and I to climb Mont Blanc, but obviously that has all changed. Rich and his family will be coming to Paris for a few days at the end of July and then, thanks to the doctors giving us an ok for Ross to travel, we're taking him to visit our families in UK.

We continue to hope to see some positive progress...

More drugs, but less convulsions...

So 2 weeks today since we got to bring Ross home which means he's been getting steroids, on top of the anti epileptic drugs, plus lots of vitamins and ant-acid to counteract some of the side effects, for 14 days now. 14 days of 9 different drugs, 3 times a day.

The good news is that he seems to be responding to something; following a few days of the steroid treatment we noticed that the number of convulsions, which had been sitting about 10-15 per day reduced to almost zero. In addition his general condition seemed to improve; his skin which had been bad with eczema cleared up and he become more like a normal baby.

The doctors had warned us that the steroids would likely make Ross hungry, that he would put on weight and that he would become agitated, especially in the second week of treatment. As a result we have been very confused about what could still be movements linked to seizures still happening in Ross's brain and what is just normal reaction to the steroids. The main thing we've been waiting on this week was another EEG yesterday; it showed that Ross's brain activity was still very abnormal, but that it was 'less bad' than the previous EEGs. Good news? Who knows...we really seem to be in a wait-and-see situation with respect to Ross's future development. Another appointment in Necker next week so maybe we'll know more after that? In the meantime it's great that Ross is settled and that as he's at home we get to spend some time with Fin. I'm off to Great Ormond Street on Friday to meet the best expert there to see if they can help. Unilever have also kindly agreed to let me have some leave for July and August so I'll use that time to try to understand Ross's condition better and we'll try to get into some sort of routine that means that we can manage as a family once I do go back to work come September.

The response to the fund-raising has been amazing; almost £5000 including gift aid raised in the past 5 weeks for the National Society for Epilepsy. Plus I know of several events being organised to raise more. Thank you, thank you, thank you...

By the way, after 7 weeks without any training, I've managed a few 15 minute jogs in the last few days; it's amazing how quickly your fitness disappears (might be something to do with the endless supply of chocolate being delivered by concerned relatives...)