Well, I think I can ‘write off’ 2011, as a pretty weird year for me personally. I just could not seem to get my ‘groove’ on and spent a year of worrying about schools, therapists, babysitters, ill-health, death and the ‘mundaneness’ of ordinary life. The end of 2011 saw an upswing, as the art work that Rebecca and I have been doing turned into a fun little exhibition in October, and hence a website is nearly ready to launch, with profits going to Luke’s chromosome charity. Then we purchased a home here in sunny California. We had been looking for a long time and when we saw a house one day, we bought it the next! It was such a quick decision, that our heads were spinning for quite a while! I also enrolled in a Graphics Design course with a view to developing a more creative spirit and eventually working in a creative organisation at some point in the distant future.
To improve on my wellbeing and state of mind have started a ‘Happiness’ project, based on Gretchen Rubin’s – The Happiness Project! I feel that this will help with all things Luke and family.
So, here is a brief account of Luke for the last few months. I am planning to do far more photographing and filming him and adding to this blog twice a week.
Luke is still very adorable and sweet and good-natured. He is now 4 and a half years old, and is so big. He weighs 20.5Kgs (45lbs) and is 109 cm’s tall. We know all this, as we had him at the LPCH neurology department a few weeks ago (January 9th 2012) with a suspected seizure. This little ‘turn’ he had, occurred while at school and it was worrying for the staff. But an EEG showed up normal. I now think that it was possibly a sensory issue and him being very cross, as I saw a little of the same behaviour at home. unfortunately, the event at school resulted in him vomiting and then sleeping. We will keep our fingers crossed that it was a ‘one off’ event. His condition makes him highly susceptible for seizures, and whilst in the back of my mind it is a very scary thing to have, many people live very happy and successful lives with seizure disorders and I feel pretty calm about it all. He is still non-verbal and still really does not follow instructions, but we are working on one command receptive language skills. He will lead us to what he wants. When he is hungry he goes to his chair at the dining table. We have moved out of the high chair and into a Stokke Trip Trap chair, which is great as he can climb onto it and we can strap him in and keep him safe, as he still likes to slide about! He will take me to the toaster in the kitchen when he wants toast! To the microwave when he wants milk and to the fridge when he wants a drink or an icy chew.
We have a wonderful home therapist who is doing lots of ‘follow through’ work with him and carry over from speech therapy.
His week looks like this…
- School from 9.30 till 12.30 everyday 5 days a week
- Speech therapy twice a week
- Hippo therapy once a week
He goes to a typical preschool 2-3 afternoons a week with our therapist so that he has typical peer interactions
At home he works on communication through picture exchange, turn taking, choice making and making eye contact.
Hippo therapy is a new therapy for him and we started late November, 2011. He is taken by our wonderful Physical Therapist who has been working with him since he was 12 months old. She had been trying to convince me for some time to do it, but admittedly I had been stalling, as I am afraid of horses, and was highly sceptical of what it would achieve for the cost involved. Anyway, I am very happy to say that it is wonderful for Luke! He goes on a Friday afternoon and when he comes home he is so happy and very engaged and makes wonderful eye contact. Last week I got those lovely dark eyes to look at me for a very long time as we played a tickling game. The movement of the horse and the fact that he can do all sorts of things on the horse (called Peppermint Patty) like kneeling, is amazing. I feel like a convert!
More to come!