Tuesday, November 30, 2010


Yesterday, the multidisciplinary doctors had a meeting to discuss where to go from here with Maddy. And they all reached a consensus. Although, the Australian specialist who I previously mentioned in this post is here in Hong Kong this week, and so the doctors want his opinion on Maddy before they formally "decide" where to go from here. 

The doctor who is here from Australia is Professor David Sillence and he is highly respected in the area of Skeletal Dysplasias. He is also the head of the Connective Tissue Dysplasia Clinic at Westmead Children's hospital where we will take Maddy if/when we move back to Australia. Hong Kong has no clinic as specialised as this, since skeletal dysplasias are relatively rare amongst the Chinese population, and so there is no one here with much experience in this area, except for our geneticist who actually trained in Australia under Prof Sillence. Maddy is the first case of Diastrophic Dysplasia ever reported in Hong Kong, or among Chinese people for that matter (although she is only half Chinese). So it is extremely exciting that someone as qualified as Prof Sillence is offering to come and see Maddy and to give his thoughts and opinions on her case. 

Our doctors have been trying to arrange a time with Prof Sillence for him to come and see Maddy, but so far we haven't been able to schedule anything! So we're really hoping and praying that it does work out that he can come because his opinion would be very valuable to us all. I think he leaves Hong Kong on the weekend or so, so we need to try to schedule something before then. 

Anyway - back to the consensus that our doctors have reached (if Prof Sillence doesn't change their opinions), they are happy with how stable Maddy is and are happy for her to come home whenever we are ready (although it will probably take a few days or so to organise the details - and we haven't been "formally" told this yet, just tentatively). Maddy still could have the MRI/bronchoscopy done, but it is up to us whether or not we want her to have that done. And if we DO want it done, we have the option of either keeping her in hospital until after it is done (tentatively scheduled for January 5th), or bringing her home and then taking her back for the test. We also have the option of bringing her home on "home leave" for a few days to see if we are really ready to take care of her at home. 

It goes without saying that I want her home permanently! I feel as though she is just as safe at home as she is in the hospital (well, slightly less since it's more likely that she'd pick up a bug, and we are not equipped to deal with an emergency situation - but she's been stable for so long that I don't think it's a huge risk). I also feel as though we are able to look after her just as well here, although I know that it would take a LOT of work!! Particularly with her feedings. She can still only take small amounts of milk - I found out that the one time that she did manage to take 60mL, it took her an HOUR to drink that much! So most of her feedings will still need to be through the NG tube for a while at least. But I'm up for the challenge!! 

So here's hoping that Prof Sillence can find a time that he is available to come and see Maddy, and also that everything goes well over the next week and that we can bring Maddy home safely some time VERY soon!! 

And here are a few pictures of our princess: (I've been trying to post more pics lately. I know everyone loves a couple of photos!)
Getting her hair washed

And now for the back

Drinking a bottle (rather unsuccessfully this time!!)


  1. i am constantly amazed by maddy's story. i love hearing the updates. the very idea that she can leave and breathe is a miracle from God. and that she was born to two people who are committed to helping her live is a blessing, too! thanks so much for sharing!


  2. that's so exciting!!! It took Grant about 3 weeks on the Pigeon bottle before he could take full feedings on it, and that was only 75-90mL. At that point it took about 30 minutes to feed him and we got down to 15 minutes within the next couple months. Like you said, Maddy isn't used to having to work to eat, but she'll figure it out. The only use I'd see in doing the MRI is to check for neck instability. If the instability is severe, you'll probably want a neck brace. Grant has had one since he was 3 months old but his neck is getting better so we're hoping to avoid surgery all together! Anyway, Maddy looks beautiful! Can't wait to hear the good news officially!