Friday, 22 June 2012

little Riley's update

A few things have happened since I last wrote, mainly Harry's trip to Birmingham. A little nerve racking as I was going alone, and nearly a disaster as I left my phone in the car (which thankfully was returned) it turned out to be an amazing success. Harry for the second visit had no new growth in either eye and all existing tumors still appear to be in remission. Absolutely fantastic, I hope that this is the way to go now. The consultant was cautiously optimistic and suggested he leave Harry 5-6 weeks instead of 4-5 weeks. He warned us that as he is still young there is every chance something new may grow and not to build our hopes too high, but for now they are happy, we are over the moon.
He's turning into a real cheeky chappie, his laugh is so infectious and he's developing a real sense of humour, mainly being told no eg for biting and laughing and going straight back to do it again. He and William are starting to play together, although William is a little rough sometimes and his favourite game is piling all the cushions on top of Harry. Harry laughs hysterically but he's not too impressed with William thinking hoods on hooded tops are for yanking on and pulling him over, to which William laughs hysterically. I must admit I smirk a little as I tell them no and to play nicely, hearing them laugh together is magical.

William, I've mentioned before, has got a squint or lazy right eye. Until we had the genetic blood results back we were convinced he had Rb too, (its a classic symptom) but at one the of the screening visits the eye people in our local hospital suggested we get on and correct it, rather than wait for him to start school. This was great seeing as normal referrals at school age take 12wks to come through.
There was one thing that stood in the way, they needed to find out if he was long or short sighted before deciding on corrective action.
William needed an awake EUA as I call it. Basically the same nasty eye drops to dilate the pupils to saucer size then an examination of the lens and back of the eye. His first 2 ended disastrously, unco-operative being mentioned on his notes. The last one, the lady doc, who was very nice, suggested we leave it 6mths til he's a bit older. I wasnt holding much hope, but on Wednesday morning I took him. Marlene our lovely Rainbow Trust worker looked after Harry, the other 2 were at school.
William cried at the first set of eye drops, but after a little talk of him saying he's a big boy not a baby he became the most co-operative child you could wish for. He sat and let them put more drops in without a grumble, then sat for 20mins completely still whilst the lovely lady doc examined him. She said afterwards, when she saw William's name sh thought, oh no not again. She was impressed, I was impressed and really proud of him. Anyway, his left eye has perfect vision but his lazy right eye is quite longsighted so she prescribed glasses and said these should correct it without needing patches. I can't imagine William keeping glasses on, but we'll see. But the best bit, his retinas are completely clear so we can rest easy his squint is just a squint.
We went to the opticians and he chose the ones he wanted straightaway, good taste William, as the cute little green ones would have been my choice too. He's asking for them daily but when we actually get them I wonder how much fun we'll have keeping them on or not breaking them.

Matthew enjoyed his sports day, and the weather was lovely for once. I don't think he will be Olympic 100m champion but he took part. They did everything as a team thing so no child felt they were coming last at any point.

Handsome boy
William ran in the pre-schoolers race, and despite doing 2 false starts he legged it down the pitch and won, unfortunately he didnt stop so I had to leg it after him. Matthew and his class were chanting his name and he was so proud of his little brother. I am so lucky (not tempting fate) I have children who love each other and play with each other, with only the occasional falling out. I am so lucky I have been blessed with my beautiful children and I cherish them dearly xx

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