Can anyone help?

I'm a big believer in doing my own research rather then always relying on the experts to have the answers. But at the moment I am stuck. The problem is that we are on a waiting list for our local 'Early Intervention Program' & this is likely to take about 6 months (gotta appreciate the irony of the term 'Early intervention'). The physiotherapy department at RCH has offered their services in the interim but even that has a 6 week wait. I can't even begin to tell you how much this pisses me off but I'll save my rant on the shortcomings of the public health system for another day. I need help coming up with other strategies for getting Max to use his right hand and ideas to help him relax it more (it's always in a fist). We do a lot of massage and prompt him to grab with his right hand but I wonder if there's more I could be doing? My beloved Dr Google has been no help whatsoever. There is so little information on stroke rehabilitation in infants. Much of the information is about recognizing a stroke in babies (thanks but you're too late) and rehabilitation in adults. Ergh! When Max first got sick a lot of people asked if there was anything they could do to help. At the time there wasn't but if you could help by offering suggestions, suggesting links or even sharing this page via Facebook/twitter so that more people can see it, that would be much appreciated.

Physio Nazi

I stayed true to my word about doing physio with Max every time he was awake. Often this was as simple as sitting him on my lap to help his head strength and other times it was more intensive. I massaged him at least twice a day on his bad side and never left him to lie in bed staring at the TV. I often forget those early days and how far he has come since then so I thought I'd write it all down here. When he first came out of ICU he struggled to suck his dummy because his facial muscles on the right side were so weak. To counter this I always put the dummy in the right side of his mouth-within days he was sucking again like a champ. He could only turn his head left and his eyes were always looking left. His right arm was very weak and his hand always clenched. His left leg was surprisingly unaffected but I always did exercises on it anyway 'just in case'. His eyes didn't focus and he wouldn't track things with his eyes. He didn't babble or smile anymore. He didn't show any sign that he recognized me. When he did tummy time he couldn't lift his head anymore. I had to support his neck again like a newborn baby. I'm now pleased to report that now you wouldn't know that anything had ever happened to him. Bit by bit he has regained everything he lost and more. He is now back on track with his developmental milestones. the only thing that still needs work is his right arm as he still favors his left. It's so nice now to be able to put him on the floor with his toys and let him play in his own way for awhile without the pressure of physio all the time. We still do alot with him everyday but I'm far more relaxed about it now. I'm so proud of mysel for staying true to my word but I'm even more proud of him.

Starting Physio

Because he could only look in one direction (left) we'd been instructed to put all of his toys on the right and make the left side really boring. Max had already amassed a heap of new toys since we'd arrived, so I moved all of them to the right side of his cot. It looked a little silly and lopsided, I half expected it to tip over. I'd decided to do some form of physio with him everytime he woke up. This might sound a bit harsh but baby physio is really nothing more then the normal things you'd do with a baby but just a little more structured. I didn't enjoy it initially, every physio session was a reminder of what he couldn't do anymore. He was able to move his arms and legs but he was weak on the right hand side. The most frustrating thing was those damn eyes, looking to the damn left all the damn time. I'd talk, sing, make funny noises and jiggle toys in his face, generally with no response. It was those rare times when he did glance straight ahead that motivated me to keep going. By the end of our first week on the ward we still had no answers as far as platelets were concerned but my little man was moving all of his limbs and looking me straight in the eye! I can't tell you how happy I was when he started babbling again and I swear his first 'word' was noooooo! Thes best part though came when he looked into my eyes, held my gaze and gave me a beautiful gummy smile.