2 years young

I watched Joseph drift off to sleep tonight and the usual thought ran through my mind – he looks so perfect.  I sometimes don’t want to or can’t believe that Leukodystrophy and the heartache that it brings is part of our everyday lives.

Birthday Boy 5 Oct 2008

Joseph is now 2 years young and is still not rolling, sitting up, standing, talking, or able to pass objects from one hand to the other or bring things to his mouth, like a spoon.   In general terms, he is still very floppy in body tone and continues to have very little control of any muscle in his body. Despite having not yet (I say ‘yet’ because I want to keep hoping) reached any of the usual infant/toddler milestones, he has a very strong little character.  He uses many and varied facial expressions to compensate for what he is unable to do with his body. He is interested in trying to reach and hold objects that are put in front of him and he can also hold and strike a xylophone with a little wooden mallet. He squeals and tries to copy intonation and continues to use clicking noises to get our attention when he wants something.

All smiles and giggles

He smiles and giggles a lot which keeps our spirits up.  My sister recently reminded me of how much progress Joseph has made since I told her about 12 months ago that I would walk the walls with excitement if I could see Joseph smile and hear him laugh.  Joseph’s milestones may not be big ones but we’re happy to see any kind of progress.

Following on from two short holidays visiting family and friends in Ireland and the UK in September, we’re now back into our daily routine and up to speed again with Joseph’s various weekly sessions to help stabilize his condition.  He had an orthopedic check-up yesterday and it was agreed that he will have some new equipment to support his body and get him into a vertical position.  Matt and I were really hoping for this approval as we feel Joseph is getting frustrated with his current options which are either  1) sitting in his corset seat or 2) lying down on his back.  We do our best to vary this for him by regularly moving and changing his position (putting him on his side or tummy for instance) but it’s not ideal.  Getting him into a vertical position will help his digestion, his sense of balance, it will help him interact more with his surroundings and it will be great for us to see him upright!

We have a meeting with a surgeon and anesthetist on 27 October to discuss removing Joseph’s nasal gastric feeding tube and replacing it with a tube that goes directly into his stomach.  Tube feeding Joseph is a long term plan due to his feeding difficulties (ie: chewing, swallowing and his swallow/breath co-ordination). We will find out what is involved, when it will go ahead and how long he will be expected to stay in hospital etc.  Matt and I are looking forward to getting the nasal tube removed so that Joseph can have his face back but we’re anxious about the effects of a general anesthetic and how quickly he will bounce back from surgery.

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