Thursday, February 28, 2013

The past three months

The past three months have been a busy time for our family, the most notable updates about Maddy are as follows:

1. In November or so last year, Maddy had an MRI done of her hips and spine. Orthopedically, they are her two biggest areas of concern. Her hip joints are shallow and the head of her femur is flat and misshapen. The ortho was previously talking about the possibility of surgery, but after this last MRI, they have decided that there is nothing they can do for now. Any possible surgical interventions on her hips have the possibility of making things worse rather than better. The "good news" is that Maddy is mobile and healthy so her bad hips are not currently affecting her. The "bad news" is that they will probably deteriorate with age and use and it is not unlikely that she will end up needing a hip replacement at a young age (maybe 20's-30's, but as with everything, it is wait and see). 

2. The above picture is Maddy's spine (with a couple of my fingers helping her to stand still ;) ). Even to the untrained eye, there is an obvious kink right around where the lungs are (the "thoracic spine" is the technical term). This scoliosis is currently at about 32-33 degrees, and to quote the amazing ortho we saw at our last visit: "This spine will definitely need surgery sooner or later". Spinal surgery is pretty scary and to be honest I had a bit of a freak-out after hearing that. I hoped and prayed that Maddy would avoid the spinal complications of her dwarfism - but ultimately, this is the situation and we will deal with it as we go. I should write a big long post about this particular ortho though - he was a British guy here for 6 months or a year, and we had a long talk about the Hong Kong medical system and it's pros and cons.

3. We have always known that since Maddy has a restricted rib cage, her lung capacity is also reduced and so she is more at risk for complications of the flu or other colds. Her scoliosis also affects her lungs, since it is in that region. She seems to have made up for that with a fantastic immune system and has mostly avoided just about every sickness that has made it's rounds. At Christmas time, however, we all were down with a nasty cold. Maddy got it too and was pretty miserable. One day, she slept 23 hours and we noticed her breathing was very fast, with some "insucking" or "indrawing" as they seem to call it elsewhere (see if you want to know what I mean). We took her to our GP who advised that we should take her to hospital. I could write another long post about that - but basically the infection had spread to the lungs and she had bronchiolitis. 5 nights in hospital and she was rearing to go again. It was our first private hospital stay and compared to the public hospital, it was heaven! 

4. Maddy's speech is really coming along. She's still delayed but she is doing AMAZINGLY. It has been such a concern over the past 2 years really, it is good to see her catching up. Her understanding is fantastic for her age, her vocabulary is about average - her main issue is with articulation (ie, she doesn't form the sounds correctly and can be difficult to understand). Even that is improving though... it also warrants another post at a later date...

For now though, I think this will suffice as a very general overview of what's been going on medically and developmentally since last time :)

Wednesday, February 27, 2013

The future of this blog

Three months! That's how long it's been since I've updated this blog. In the beginning, I started this blog as a way to record the pregnancy with all it's ups and downs. I've wished that recording our experiences and making them public would help other people - and it has. I've had multiple people contact me through this blog saying things like "My pregnancy was similar to yours, and reading your story has given me hope". At least one person was given a prenatal lethal diagnosis by medical practitioners, but questioned that by comparing her measurements to mine at a similar stage in her pregnancy. The doctors were wrong and that beautiful little girl now also has the middle name of "Hope". 

A lot has happened during the past few months and I've given a lot of thought about the direction that this blog will take. In the beginning, I spent so much time on here, writing updates and recording everything. As Maddy grew and there was less "medical news", the updates became less and less frequent. Simply put, I've had less to say. 

I have thought of closing the blog down - but I couldn't do that, not after knowing it has helped people who were in similar situations to where we were right on three years ago. (It was 3 years and 10 days since I first heard the words "skeletal dysplasia", and 3 years and 3 days since I first wrote this first post.) So I've decided this blog will stay online for now.

I don't want it to die completely either though - although I can't afford the time that I used to spend on it. I have realised that I am not a "blogger". I'm not a great writer. I ramble on too much. I don't "change my theme" or use the right "buttons" and link up with "throw-back thursday" or "wordless wednesday". I thought of doing it but it's just not what this blog is about.

So I will continue to update about Maddy's current condition, I may post videos and photos from time to time as well. Hopefully more frequently than every 3 months - although I'm not going to be watching the calendar either. But I do welcome a friendly nudge if it's getting too long since the last update ;)