It's been a while, again...

It's been a very long time since I've managed to find the time and the energy to write an update. I can't believe it's already September and Ross is almost 28 months old. We've just spent 2 weeks in southern France staying at the same villa we were at last year.

Ross was in the pool everyday and seemed to love it, and he genuinely seemed to chill out and become very relaxed, which may have had something to do with the fact that he wasn't being rushed about from one appointment and therapy session to the next. His legs and arms are also really brown and his hair really blonde...but then it was pretty ot every day, the thermometer nudging 49 degrees one day!

And Fin had a great time too!

We had a week in Cornwall back in June where Fin and Ross both enjoyed some British beaches and waves. We had great weather then too although not as warm as in France.
The Lizard Penisula is a fantastic place to go with with kids and Kynance Cove is one of the most beautiful beaches I've ever seen.

Ross still needs constant attention, but his sleeping has been much better in the past few months in that he is normally only up for 1 or 2 nights a week, rather than almost everynight. Most nights now he may not go to sleep till about 10pm, and he may wake at 5 or 6am, but that’s better than being up for a few hours in the middle of the night. He’s also eating 2 solid (or rather pureed) meals per day which along with no steroids must help the sleep situation.

We finally got Ross off the steroids after many months of reducing his dosage from 40mg per day to zero in increments of 1mg per day. At that point he was also able to stop taking the multivitamins and calcium he was on, so now he in still taking the 2 anti-epilepsy drugs, 1 to settle his stomach and 1 to help his bowel movements, which need to average 1 a day or Ross becomes really grumpy.

11^th May was Ross’s second birthday and to be honest neither Clair nor I really enjoyed it. A second birthday should be lots of noisy kids running around, playing with each other and their siblings. Ross’s wasn’t like that. We did get him a funky swing called a Swung from a special needs website (which basically means they can charge twice the price as normal stuff) which Ross can sit on 1 seat and Fin can make him swing by swinging on the other seat.

Ross turning 2 also means that we have to pay full price for his flight tickets and he must sit in his own seat. We did have a good argument with Easyjet the first flight we took after his birthday as our logic, considering that fact that Ross can’t sit, and that he was the same size as a few weeks earlier before he was 2, was that he should still be allowed to sit on our knees. After about half an hour of the stewardess’s reading manuals that looked like hadn’t been used for years, the pilot on the phone to Easyjet and them on the phone with their insurance company, the result was a “sorry Sir, but he’ll have to sit on his own seat, and if he can’t be restrained properly there you won’t be allowed to travel”. Thanks Easyjet. So since then Ross has done 6 flights sitting in his one seat, slumped over against some padding on the armrest in what looks like a very uncomfortable position. He has been a wee angel though and thankfully has either sat quietly or slept during most of the flights.

Ross has had some great medical experiences lately. The lady who came to the house with some music for Ross to listen to on tape cassettes has obviously not noticed that the only place to get a cassette player these days is to buy a Ford Escort on eBay. Reminded me of a friend who had a visit from someone from the wheelchair service, who was in a wheelchair, and as their house was not exactly user friendly the meeting had to take place in the front garden. In the past few months he has had a general anaesthetic to check his hearing by having ABR (audio evoked brain response) as he failed the initial test completely. We were pretty sure there was nothing wrong with his hearing, but it’s a shame he had to go through another general anaesthetic to confirm it. Ross’s eyesight has also been checked via a test where he was wired up to monitor his brain activity and then shown a series of images. This showed that his eyes themselves work (apart from the prescription glasses he has worn for over 18 months now) but it is the lack of ability of his brain to interpret the signals it is getting via the optic nerve which means his eyesight is very poor. Unless you are down close in front of his face, he will not recognise anything, and in recent months he does seem to have been recognising at least his parents and Fin like that.

We did get Ross’s blue badge to allow us to use disabled parking spaces which will be abig help for Clair when she is out with the boys. We did resist the temptation to go parking on random double yellow lines just for the sake of it when we got it through though.

Ross starts Brooklands special needs school in Reigate next week. He’ll be going 2 mornings a week and continuing at Dame Vera Lynn School for Parents for another morning each week. We’ve no idea how it’ll work out with us leaving Ross at school and with Fin starting reception class at his new school in a few weeks too.

But probably the best news in the past months has been Ross’s giggling. Other kids in his therapty classes may have started rolling over, or choosing toys, or saying words, but Ross has managed to giggle a few times (under specific conditions including having had lots of sleep, a full tummy, no need for a poo and some intense tickling). And that is a major milestone for him...