South China Morning Post

A couple of months ago, I was contacted by a reporter who wanted to write a story about our family. 

You can read the article here.

I have to say I love the article and thought it was a pretty true reflection of my thoughts. That said, I would extrapolate on one main thing - I do think that Hong Kong is a hard place to deal with dwarfism and the related issues. I do think that the culture in the medical system is still very behind the rest of the world. The medical care is fantastic - but the environment and the support to families is by and large, terrible. That said, we have had some amazing, kind and helpful doctors. We have doctors (in the public system) who I email and they get back to me right away. The other week, a small cabinet fell on Maddy's hand and I freaked out thinking a bone might be broken. I emailed one of her doctors and headed up to the A&E. A&E was very fast and thankfully nothing was broken - but within an hour, this doctor had called me to follow up. 

What the medical system needs here is a bit of kindness and sensitivity. They have the medical side of things under control, and it wouldn't take them THAT much effort to be a bit more kind. I bet they'd have better job satisfaction too! 

On that note, I've actually been considering issuing a formal complaint about some other doctors as I was so upset by them, but more on that another day...

Back to the article though, I still have days where I look at my kids and have an overwhelming feeling of "our family isn't complete yet" - but it would take some convincing Bernard to have any more. I must have been feeling particularly maternal the day when I said I could have 100 more ;) We will see what happens with that...

It has been far too long...

I can't believe it's been three months since I last updated! We have had a lot going on - both personally and medically - and I'm not ready to share everything yet so that may be part of my silence. Much of it also is the business of life with three kids, and I'm far more relaxed about everything medically as well.

Regarding Maddy's spine, we know that she will need growing rods put in. Our team here say that it won't be done this year, so we are just continuing to monitor it. It is better to do that surgery as late as possible - but at times it is hard having it looming over our heads, not really knowing when to expect it. 

Briella is growing up - she's so much like Maddy in some ways, and so different from her in others. One example: Maddy was sitting pretty well around 7 months, and while she could roll, she preferred to be upright. Briella on the other hand is CRAZY FAST at rolling but is only now starting to sit at 9 months old. I think that Briella is much more adept at using her feet as a second pair of hands - she's ALWAYS picking toys up with her feet and passing them to her hands while she's on the floor. With those rolling skills, why would she want to be stuck sitting in one place?

When Maddy was younger, the cleft surgeons delayed her surgery until she was 22 months! I've always felt that it had detrimental effects on her speech and also as a result, behaviour/frustration at her inability to communicate. I have been hoping that Briella's surgery would be much sooner than this (for average babies, the cleft is repaired around 9 months old). It looks as though she MIGHT be having her surgery in November/December at around 12 months old - which is spot on when I personally think it would be best.

We've got some tests coming up - we already know that Briella has significant hearing loss (as did Maddy). This could be purely as a result of the fluid in her ears associated with cleft palate. If it is, putting in grommets (ear tubes) during her cleft surgery will fix that completely (that was the case with Maddy). She has another hearing test on Thursday to determine if the hearing loss is just related to the fluid or not. 

In early October, we have two important tests coming up. Firstly Briella has an overnight oxygen monitoring test. We had one of these in April and the results were inconclusive (mainly because she didn't really sleep very well!!). We also have an MRI of her spine to see if it is stable for surgery. If both of those tests are fine, we will begin moving towards surgery. 

So that's where things are at with us at the moment!