Tuesday, January 4, 2011

First Outpatient Orthopedic Appointment

This morning, I woke up bright and early (ok, 8:30 - that's early for us here in Hong Kong!) to take Maddy to her first outpatient orthopedic appointment. We were going non-stop from the time I woke up until we got to the hospital a little after our scheduled 11am appointment. 

As soon as I walked into the waiting room, I could tell we were in for a long wait - it seemed like half of Hong Kong was there today! It took us two hours to see a doctor (gotta love the public health care system here! But honestly, we have no other alternative. Maddy really needs to be at a university hospital, not in someone's private clinic for her orthopedic issues.) During the wait, Maddy refused to sleep so she got overtired and the last half hour, she was just screaming because she was so tired. Typically, she finally fell asleep five minutes before we finally were called, only to be woken up (screaming some more) by the doctor when we got in there.

Overall, I was quite impressed with the doctor. I hadn't met him before, but he was on the multidisciplinary team when Maddy was in NICU so he was very familiar with her case. He obviously has no experience with Diastrophic Dysplasia because of how rare it is, but he has done his homework and is aware of what we need to look for with Maddy and how we should manage it. 

Today, he checked Maddy's hips to see how they are doing now that she is out of her Pavlik harness. It seems as though they are still good, not dislocated any more - however she will need to have an x-ray and an MRI to confirm that her hips are ok.

Next Tuesday, we need to go back to the hospital for another set of x-rays for Maddy. They will assess her hips and her spine. Then on Wednesday we need to go back again - there is a highly regarded orthopedic doctor from Toronto, Dr Benjamin Alman, who is in Hong Kong and they want to consult with him. From Dr Alman's bio, he doesn't seem to specialise in Skeletal Dysplasias, but he has written at least one research paper on the subject - and he seems to be very good at what he does, so it will be good to have his opinion on Maddy as well.

I asked the doctor today about Maddy's feet and whether he thinks she would benefit from AFOs. I know that Prof Sillence generally recommends against AFOs for DD kids - but they can sometimes be used in a way that prevents surgery on the feet - and if I had to choose between AFOs or surgery, AFOs seems like the lesser of two evils. He said that AFOs are a possibility, but he'd reassess later on. 

This week, we have one more appointment - on Thursday we have the developmental occupational therapy appointment. Then next week is when the fun really starts - we have four different appointments! On Monday, we have ENT and physio, then on Tuesday and Wednesday we have the two orthopedic appointments (Tuesday for x-rays and Wednesday for the Alman consultation). It's going to be a fun week!

1 comment:

  1. just found you - intrigued by your comment on my hopeful parents post
    you have a beautiful daughter and an amazing spirit
    loved reading your story