So far it has been a really great holiday, weather is good, spirits are good, and the whole family are enjoying themselves.
Robbie has a new found love in swimming, he seems to be really up for this activity and it seems water gives him more freedom of movement, and general confidence within himself. He is freely kicking his legs and paddling away like crazy, although he tends to twist around and end up swimming on his back with the dystonic movements he loves this activity and it really is the best exercise I have seen Robbie take in many many months... Whilst in the pool (which we have visited daily since arrival) he doesn't have any objection to being splashed, sitting under waterfalls or going through splash zones he is, quite simply having a ball.
One area I am going to touch on which I found a bit irritating, frustrating, and rather saddening was Robbie decided he wanted to go down the flume, and after struggling with me up several flights of stairs we eventually reached the top of the flume ready to go ride the waves as it were, we were met by a lifeguard who insisted only one person can ride, despite me explaining Robbie had problems with mobility, he absolutely refused to let the two of us ride together saying "It stops in a very shallow pool he will be all right" I advised but he has stability issues and going down the flume wasn't a problem but getting to his feet at the bottom would be, he still did not take on board the issues, and I decided it was best just to trawl back down the stairs and told Robbie he couldn't go down it because he couldn't swim very well yet. Was Robbie dissapointed, sure he was, but at the end of the day I also understood the lifeguard had a job to do and had rules and regulations which he could not break... we soon got over it and went and played at the water fountains instead. Again another sad reflection and example of the day to day things people with no knowledge of the condition can relate to, until it is presented to them on paper before their eyes.
The first day in the pool lasted about an hour, he came out and was very tired, he actually came home and slept on the couch for an hour, but after his nap woke up again full of beans.
Other than the pool, he is just loving dawdling around and about the chalet with his little sister, even better still his Uncle and cousins arrived yesterday which brought new company and playmates into the whole equation and has simply added to the drama and excitement for him.
Other than the swimming pool, Robbie has a great love for funfairs, and the scarier the rides the more he seems to enjoy... this is fine, however Dad is the biggest wimp going on these things, but I still smile on and do it... (Through gritted teeth most of the time) Mum's turn next time !
There are a few areas where there is some concern and I think it may be beneficial to share, these areas are the following....
- Eating seems to be becoming a bit more difficult for Robbie of late, he frequently does not want breakfast (this has been the case for a few weeks now) this seems to be simply down to Robbie not having much of an appetite first thing in the morning, also when he is eating his arm keeps going the wrong way and he finds it difficult to use a knife and fork and when he does, he has very poor coordination, he usually tends to use his fingers where possible.
- Moods can still be a bit of an issue, wheter these are as a result of frustration, or side effects of his medication it is still quite difficult to tell, sometimes it makes you feel like you are walking on eggshells to try and avert any outbursts, although to be fair this hasn't been as much of an issue during the holiday - possibly because there are so many distractions away from his usual day to day routine.
- Sleeping, Robbie still goes to bed without a fight, but again has the tendency to stay awake for hours after being bedded, he is up and down to the toilet, comes out of bed for drinks, back to the toilet and on and on it goes. that said he does drop off eventually.
The above "concern" areas have been fine though (plenty of work arounds for these especially so with little nurse Chloe on hand to assist), because the one important and heart warming thing is, Robbie has not mentioned any pain at all this week, it is absolutely fantastic to see this little guy get some relief from this..
We have spent a fair bit of time just looking, and thinking about the target goal setting areas we discussed whilst seeing the complex motor disorders team at the Evelina at our last visit... we will cover this in detail at our 5 day visit at the end of the month - my initial thoughts tend to sway between helping his arm and hand coordination to assist him better with clothing and eating himself, however other area of consideration is his ankle/foot as Robbie currently wears an orthotic splint to help correct his gait, and I am sure given the chance to lose this, would probably make Robbie much happier... basically I just see us approaching a junction in life ahead and we need to simply establish what route we will take...
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