for Luke. Since the pillows are made of our clothes, Luke can feel close to us even when he is sleeping.
Charlotte
I would like to personally thank Deborah for all the help she has been giving us. She is one of Luke's angels and has been helping my parents get a good night's sleep every Wednesday. She recently moved back to Chicago, but before she left she sent Luke a gift. A few weeks ago we gave her some of our old clothes that we have no use for. Deborah used these clothes to make pillows for Luke. Since the pillows are made of our clothes, Luke can feel close to us even when he is sleeping. Charlotte
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A picture paints a thousand words! This was Luke last February on his trip to NDRD at Pittsburgh Children's Hospital. Here you see him undergoing one of the many tests they did to assess how far the disease had progressed. This is an auditory brainstem response evaluation to see how the signals received in his ears transfer to his brain. Looks like he's none too impressed with being connected up to all the fancy electronics. The results showed that his hearing has slowed down a lot. Basically his ears are fine, but it takes much longer for his brain to actually receive and process the information (parents I know what you are thinking - that's just normal for kids, right?). So we have to speak in short sentences and repeat what we say so he can get it in small bursts. He's also better on his right side than his left. This is another reason why routine is important. If he knows what's coming, he instinctively knows what he is going to hear, so the delays in nerve transmission are less of a problem. This is the kind of information that enables us to adapt and look after Luke in a way that works best for him. Other things we learned from the tests were that his vision is still good (shown by the visual evoked potentials test), which was a pleasant surprise, but the MRI showed that his cerebellum (part of his brain) is severely impacted. What does this mean? The cerebellum controls fine movement - i.e. coordination, precision and accurate timing. As Wikipedia succinctly puts it: "Cerebellar damage does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning." That pretty much covers what we are seeing with Luke. So we are trying out various things like big buttons to control electronic toys so that he gets the feeling that he can do stuff. Must be driving him nuts, but he still manages to stay mostly happy - an example to all of us! And by the way, in case anyone was still wondering, yes we are using Beatles song titles for our blog entries. We'll see how far we can go with it: Tomorrow Never Knows, but I'm sure We Can Work it Out! |
Luke ParkesLuke is six. He lives in Tampa, Florida. His mother is French and his father English. He has an older sister who is 17 and an older brother who is 14. CategoriesArchives
December 2016
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