Thursday, December 23, 2010

Our first outpatient appointment

Today, Maddy had her first outpatient appointment - it was with occupational therapy. From reading other blogs, it seems as though in the US and Australia, occupational therapy and physiotherapy are often offered as home visits (am I wrong about that? Would love to know) - but here in Hong Kong we have to head to the hospital for the appointment.

Today's appointment primarily focused on Maddy's oral motor skills. The therapist had met Maddy once in the NICU - she is based out of a different hospital - and she was amazed at the progress that Maddy has made in the past month! She has gone from struggling to take even 40mL in one hour long feed to being able to easily take 140mL in about 15-20 minutes. The occupational therapist was showing me how Maddy's sucking is improved so much that I can start the feed without even squeezing on the Haberman feeder and just relying on Maddy's sucking ability to get the milk. She can't finish the feed like that because her sucking is still not strong enough - but she can take the first 40mL or so with no assistance which is a great start :)

We will also be seeing the occupational therapist for some developmental training, since Maddy is developmentally delayed in some areas. It is much harder for her to use her hands for one - she will learn how, but a bit of help will make it easier for her. Today though we didn't focus on those areas, only on the feeding. 

I mentioned to the OT that I wanted to try and find a chair that is more suitable for Maddy to be in. I find that the bouncer doesn't seem to have the back support that Maddy needs - she seems pretty uncomfortable in it, arching her back all the time. We have a Bumbo chair and I've put Maddy in it a couple of times when she needs a change of position but I don't think it is ideal for her yet - her back is not quite strong enough yet. When she was in the hospital, they had a "feeder seat" that Maddy seemed to love and I've been wanting to find something similar - something with a bit more back support. The proper medical ones are very expensive though - particularly in Hong Kong, close to USD$1000 apparently - but the OT helped me to fill out a form so that we can borrow one from the hospital for a few months. We should be getting that in the next week or so! 

When we were just about finished our appointment, one of the OTs from the hospital where Maddy was in NICU showed up and it was great seeing a familiar face. It made me kind of miss the hospital - not because I miss NICU, but Maddy had some fantastic nurses and doctors up there and after four months, we developed a bit of a relationship and I miss that. I think Maddy does too, she really loved some of those nurses, and they loved her too :)

As I was leaving the hospital, I ran into someone I knew when I was pregnant with Lana. Her daughter is the same age as Lana (just over two) and has developmental delays, so they have been going to the hospital for about a year for therapy. Her daughter has no diagnosis and the doctors don't know why she has these developmental delays - they are just taking it one step at a time. It made me realise just how lucky we are to have a diagnosis for Maddy. I know generally what to expect, when she might start rolling or sitting or walking, what kinds of things she will, or might not be able to do as she gets older. I can have some kind of an idea in advance what her future might be like. I can also look at other kids and even adults with the same diagnosis as Maddy and know that she has such a bright future. I'm grateful that my questions aren't just answered with further questions. I know that a diagnosis isn't everything, and each case is different, each individual is different... but I'm glad that we do know that, at least.

All in all, it was a pretty productive day. And it wasn't too bad, it didn't take too long and Maddy (and I) handled it great. We have no more appointments until after the Christmas/New Year period but we'll start the year with four appointments by the 10th! THAT will be fun, I'm sure :)

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