Thursday, September 9, 2010


I've slowed down a bit with my blogging because not much is happening at the moment! Maddy still has an MRI scheduled for next week Wednesday to assess the stability of her neck, but the doctors are not even 100% sure if they will go ahead with that. The MRI will include a bit of movement of the neck and they are not sure whether that movement may press on the narrow airway and block it. The pediatrician is setting up another multidiscipline meeting, most likely on Tuesday (the day before the scheduled MRI) to discuss whether that is the best next step. It's been really difficult for him to schedule because at the meeting, there will be something like five doctors who are all the heads of their departments (pediatrics, ENT, anesthetist, pulmonologist and orthopedics, I think). Because Maddy's case is complicated, they need all of the best doctors in their fields working on her. We are meant to be meeting with all of those doctors next Tuesday to discuss what we will do from here. I'm hoping that the meeting will provide us with a bit more of an understanding as to how long Maddy will need to be in hospital, and what steps will need to be taken in order for her to be able to come home safely...

We found out last week that Maddy is actually the FIRST case of Diastrophic Dysplasia ever in Hong Kong! I guess because the mutation is much more rare in Chinese populations, that's probably why there hasn't been a case here before now - and it took my Western genes and Bernard's weird mutation (another first there) for it to happen. What are the odds? We should start buying lotto tickets!! 

Part of Maddy's condition means that she has these cysts on her ears - it happens in most cases of DD within the first month or so of life. It seems like it's pretty painful and uncomfortable, the doctors and nurses have been applying compression bandages to them (the standard way to treat them so that they heal well), but Maddy doesn't like the bandage being changed, or anything touching her ears for that matter. The doctors have found that the bandages that they were using were causing some pressure sores on her ears, as well as slightly elongating Maddy's head because the skull of an infant is still not fused and pressure can move the bones around a bit. They've been experimenting with other ways of compressing the cysts without causing Maddy as much discomfort and they are currently using this clip kind of thing which only applies the pressure directly to the ear without pressing on the rest of the head. Here's a picture of Maddy's ear cyst on her right ear. She's had this for a couple of weeks now...  

In other firsts, the nurses asked me the other day whether I would like to start giving Maddy her daily bath - so I've been bathing her for the past couple of days! It's so nice to be able to be involved a bit more in the practical aspects of caring for Maddy. Here are some pictures of Maddy's bath time :)

And one last picture of Maddy in her bed,

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