Merry Christmas & Happy New Year

Happy Christmas from the three of us

Before we head away to spend Christmas and the New Year with family in the UK and Ireland, I just wanted to write an update on Joseph as we haven’t done one in ages and also to wish you all a very happy Christmas and New Year.

Joseph is in better form after a fairly difficult two weeks, first he had a tummy bug and this was followed by a chest infection. He has slept again these past two nights which is great and his morning physio sessions for his chest have just finished, so hopefully, we’re back on track for a positive and healthy Christmas!  In general, he’s very chirpy, cheeky and has loads of new facial expressions!  We’re learning Makaton sign language in his speech therapy sessions so we’re trying to integrate that into our everyday lives.  We’ve got to the point of getting Joseph to make a ‘click’ with his tongue when he is saying ‘yes, I want…’  We’re also trying to give him choices so that he picks a particular toy with this same ‘click’, along with eye contact.

In the past couple of weeks, we’ve received Joseph’s new medical buggy a.k.a ‘The Hummer’ so we’re hoping to take this with us for the holidays as it can be reclined with his corset seat in it.  This makes things more comfortable for Joey when he falls asleep as his head will no longer fall forward.

He has also got a new piece of equipment this week which Matt calls ‘Robo-Cop Joe’.  It’s a vertical apparatus which allows Joseph to be in a standing position.  It’s a plaster cast of his body, made out of firm foam and plastic (which makes me wonder why it weighs a ton?!). Thankfully, Joey is incredibly patient with me as I almost catapulted him out of it the other day when I was learning how to change the position of it.  Rather than scream at me for giving him whiplash, he merely giggled and did one of his high pitched ‘isn’t this fun’ squeaks.  This vertical piece of equipment should help Joseph’s hips to develop better and its arrival is quite well timed as a recent control x-ray showed that his hips are not developing like they should due to lack of movement/motricity and lack of weight bearing.

Joseph will have surgery for his tummy feed-tube on 22 January 2009.  He will have one general anesthetic during which he will have an incision made for his tube and also a valve will be put into his esophagus to help stop reflux.  With this valve, we can hopefully take him off his anti-reflux medication.  All things going well, he will be in hospital for 8 days and then home with a plaster and tube free face along with a new tube coming out of his tummy.  Night feeds should continue as normal once his wounds have healed.

That’s about it for now, I better go and sort Joey out as he’s just woken after his nap. Hope you all have a wonderful Christmas and here’s to a happy and healthy 2009.  Thank you for all your support during 2008.

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