Wednesday, October 22, 2014

Maddy's wheelchair test

Today Maddy had her first try of a wheelchair.


To be honest, I had my doubts about whether it was the right time to pursue getting a chair for Maddy, whether it would be beneficial, whether she'd be able to steer it well, whether she'd even like it. Watching her be able to drive herself around, however, all my doubts evaporated and now I am positive that having a chair would be a GREAT thing for her - it would increase her mobility exponentially - and she definitely is ready for it.

Maddy was SO excited by it and kept saying "I love it! I love it! I'll be careful not to run anyone over. It's much faster than walking!" She was careful and deliberate about steering and the joy on her face was unmistakable.

Unfortunately, due to time constraints, we will not be able to pursue this in Hong Kong but I want to make it a top priority as soon as we arrive in Australia. I know realistically it may take some time, but I want to do everything within my power to make sure she has access to this kind of mobility as soon as possible. 


Tuesday, October 14, 2014

Transferring - the medical nitty gritty

It can be a complicated thing to move with kids with special needs. Moving overseas is even more complicated as you change from one medical system to another. Particularly if the country you are moving to has a public health system, moving means going on another often long waiting list. Coordinating things to attempt to have a smooth transition with good continuity of care has been complicated, but I feel we are off to a good start!

When we were deciding to move, one of the first things I knew I had to do was to contact our new hospital in Sydney and attempt to open a file for them. I was very fortunate to be able to get both girls in to the Connective Tissue Dysplasia clinic at Westmead Children's Hospital when we were back in July (given we had to go as "private patients" and pay out of pocket). Now, Hong Kong doesn't have a Connective Tissue or Skeletal Dysplasia clinic, but Westmead does. Run by clinical geneticists, these doctors can help to coordinate and oversee the "big picture" medical care for our kids with dwarfism and other skeletal or connective tissue disorders. This is the department that Prof Sillence was the head of when he graciously visited Maddy in the NICU when she was only four months old. He has since retired and a new doctor has taken over.

One of the things we have had to decide is what we can do in Hong Kong before we go and what we should do in Australia after we get there. On our horizon is Briella's cleft repair, Maddy's spine, potentially more work on Briella's feet - as well as wheelchair assessments for Maddy. I tried to get the kids into see orthopedic doctors at Westmead before our move, as well as getting Briella in to the cleft clinic as well, but with our limited dates and the hospital's waiting lists, we were unable to do so. We do have orthopedic appointments, as well as a cleft appointment for Briella, lined up already at Westmead for shortly after we arrive in Australia early next year. 

We have decided to do all the orthopedic work in Australia - Maddy's spine and Briella's feet. These things are not so urgent or time sensitive and waiting would not be detrimental. While we have had a wheelchair assessment for Maddy and will be doing a "fitting" in two weeks, I don't think we will get the chair here as it is extremely expensive and has no public funding. In Australia we would be eligible for some public funding for a chair making it significantly more affordable. While I would like Maddy to have more independence in distance mobility, I don't think it is an urgent need at this stage. 

We have decided to attempt to do Briella's cleft repair in Hong Kong before we leave. On one hand, I wish we could wait and do it in Australia as it would be more comfortable and supportive to have it done there. I hate the ICU here with a passion, and surgery will definitely mean at least one day, possibly longer, in the ICU. I wasn't particularly fond of the plastic chairs we were meant to sleep on in the surgical ward either (that or the floor - no blankets provided). While we could do the surgery in Australia after we move, it will take some time, possibly months, to organise. After Maddy's surgery was delayed until 22 months and seeing the effect that had on her speech development, I don't want to be delaying surgery for no good medical reason, just because we might all be more comfortable at Westmead. 

Working towards Briella's surgery, we have in the past two weeks had another overnight oxygen monitoring test (which Briella actually slept for this time!) and an MRI of Briella's cervical spine. Both of these tests are meant to show her suitability for general anesthesia. I'm pretty sure she did fine in the oxygen monitoring, and I think the MRI should have been clear but we don't know the results yet. We will see the cleft clinic again on October 24 (Lana's 6th birthday) and hopefully will get a surgery date then.

It is currently hard to plan our exact "moving date" without knowing the surgery date as the surgeons have said they wouldn't recommend flying within about 4 weeks of surgery (usually it is safe earlier than that, but they are being a bit more cautious given Briella's small airways). We would like to move before Christmas, possibly around Dec 22-23, but can only do that if we have a surgery date which is in November. If the surgery is scheduled in December we may need to delay our move until January instead. We can't delay too long, however, as school starts in Australia at the end of January and we'll need to find somewhere to live before then! 

Please pray for us during this time! The good and bad thing about having a blog is that I've been able to go back and read about our experience with Maddy which held soooooo much frustration (if you are interested, her repair was in May '12). I'm at least prepared for it and more knowledgeable this time around - but I've learned that is both a blessing and a curse. As with all surgeries, if Briella has a cold at the last minute, the surgery will be cancelled and then we may need to do it in Australia instead. That wouldn't be so bad - but I'd rather it was done sooner than later... particularly if later meant months later!

Thursday, October 9, 2014

How the Spinal team let us down

I have been debating whether or not to write this down, whether it warrants a formal complaint to the hospital, or whether I should just take a deep breath and move on. I'm going to write it down because it is part of our story, and it has been a source of much dissatisfaction for me in relation to the medical care that Maddy is getting here in Hong Kong.

We have been seeing the Spinal orthopedic team here in Hong Kong for several years, since Maddy first developed scoliosis. It has been my primary medical concern and was one of the main reasons why last year, we wanted to see Dr William Mackenzie in the US for his opinion on how to manage Maddy's scoliosis. Up until our trip to see Dr Mackenzie, I'd had no major complaint with the spinal team here. They were monitoring her, and when I mentioned consulting with Dr Mackenzie, they seemed open to doing so. 

Now due to the early onset of Maddy's scoliosis as well as the location and severity, we almost always see one of the top spinal doctors. These guys are very good doctors - they are professors and are the current and previous heads of the orthopedic department at the largest hospital here in Hong Kong. They are experts in congenital scoliosis and have pioneered some new technologies for treating such conditions. That said, they previously have not treated any patients with diastrophic dysplasia as Maddy is the first case diagnosed in Hong Kong. In my mind, if we were able to get the opinions of two teams, one of whom was a scoliosis specialist and the other who was an expert in diastrophic dysplasia, we would be giving Maddy the best medical care that she could get.

As soon as we came back from the states, however, it was obvious that the spinal team here had absolutely no interest in conversing with Dr Mackenzie on any level. They didn't agree with his opinion, and did not plan on following his recommendations for bracing Maddy's spine. One of their senior doctors told me "There is no point in talking to him as we are not going to change our opinions anyway."

Then there was the matter of the hemivertebra which our doctors insisted that Maddy had and Dr Mackenzie insisted that she did not have. Even when the CT scan proved that Dr Mackenzie was right on this issue and our team here were wrong, they still did not think he was worth consulting with.

In this post, I spoke about my discomfort at being stuck between two opinions where our doctors were refusing to communicate with Dr Mackenzie. I had to learn, however, the uncomfortable truth that ultimately, even though we consulted with Dr Mackenzie (and paid a ridiculous amount of money to do so, I might add!), he was not our doctor and we had no choice but to follow the treatment path recommended by our Hong Kong doctors.

Since we have been talking surgery, Dr Mackenzie's opinion is even more important to me now more than ever. He has done this exact surgery on many diastrophic patients and understands the ways in which their bodies respond which is not typical. I have continued to ask the team to consult with him and one doctor promised to do so.

On our last appointment with them, I asked after that - did they consult with him? What did Dr M say? Did they agree/disagree? I was floored when the doctor told me they hadn't contacted him after all. "We are worldwide experts in congenital scoliosis and we know all the other experts in congenital scoliosis. I haven't even heard of this Dr Mackenzie so why should we consult with him?" I was very upset and told him "You may be experts in congenital scoliosis, but you certainly are NOT experts in diastrophic dysplasia - and Dr M is. He sees hundreds of patients with this condition and you have seen only one. He has done this surgery on many of these patients, and you have done it on none."

It is a very hard place to be in when you have no choices - and I am thankful that we are leaving Hong Kong and so I can say goodbye to this arrogant team of doctors who think they are too "expert" to consult with doctors who may be experts in other areas. It is hard to say what would have been if we had've been able to follow Dr Mackenzie's advice of bracing. It certainly wouldn't have corrected her scoliosis, but it might have slowed the progression or helped with her back pain. Regardless, we are where were are and we have to make the best choices that we can with the options available to us right now.

I am thankful that Maddy's spinal surgery will not be performed by the doctors here. It will be done in Australia instead. While I have not yet met our surgeon there, I have heard good reports about him. I hope that he will be more open to consultation as I hope Dr M will still be able to have some input into our girls' medical care.

Saturday, September 13, 2014

Moving

It's official: we are moving back to Australia.

When we first moved to Hong Kong nearly eight years ago, we planned to be here for 2-5 years. We had thought it would be good for our kids to be born here as they would be eligible for dual citizenship if born here - but if born in Australia, they'd need to give up their Australian passports if they wanted a Hong Kong passport. There were many reasons for us moving here, including for me to learn more of the language and culture of my husband, spending time with my aging father-in-law, and to do what we could to help out in a small Chinese church which had a lot of youth but not so many married couples or families. It is a good place to work in that the pay is generally high and the tax is low - but on the other hand the cost of living is high so financially, living in Hong Kong wasn't as "beneficial" as I'd expected. 

Most of the time living here has been amazing - we moved here as newlyweds and now we are a family of five. Bernard and I have grown a lot - both together and as a family. Hong Kong is well and truly "home" for us. Living in Australia seems like a childhood memory at times - although we've maintained links there and visit regularly. 

If you'd asked me a year ago how long we would be in Hong Kong, I would have said "indefinitely". I couldn't picture us living anywhere else EXCEPT for Hong Kong... But many things that have happened in the last year seem to have shown us that this door is closing and that it is time to move back. 

First of all - schooling. A bit over a year ago, Maddy was rejected by a school which we felt would have been great for her. To be more blunt, she wasn't outright rejected - she was accepted only with the condition that we personally pay for a one on one aide for her. This would have more than doubled the school fees and was not open for discussion. There are no "antidiscrimination" laws when it comes to school enrollment and schools constantly discriminate on whatever basis they choose. In addition, the needs of students with disabilities are not subsidised by the government and so often schools charge additional fees for students with special needs. These fees are non-negotiable and as we found out, sometimes attempting to open a dialogue results in an enrollment offer being withdrawn. While this may or may not have been an issue for primary school for Maddy, I didn't want to wait to find out. 

Secondly - I'm done with the medical system here and their archaic and condescending attitudes. Not all doctors are like that - but many many are and they have soured our experience. While I'm sure that our experience in Australia will not be perfect, from what I know about it so far, it will be an improvement. 

Also - this was bound to happen some time, and in many ways it is easier while our children are younger. The longer that we are here, they will develop closer friends and stronger roots here and it will be harder to transplant them across the ocean. 

We are looking forward to being able to buy a house and settle down. There are many things that we are looking forward to. Being closer to family and old friends. Having amazing grocery stores in every suburb. Grass and blue skies! We will be living in Sydney, most likely in the Hills district. I've never lived anywhere in Sydney so it is a complete new beginning.

But first we need to say goodbye and that is hard. At the moment, I don't feel as though we are "returning home". We are leaving our home for a new unknown. We are uprooting our children from all that they have ever known. We are closing a chapter of our lives - one which has been an amazing adventure and one that has brought so many good things into our lives. 

Monday, August 25, 2014

South China Morning Post

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


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!

Saturday, May 31, 2014

Maddy's CT scan

Last week, Maddy had a CT scan of her spine. The purpose was to get a very clear picture of the structure of her scoliosis in order to plan towards possible surgery. As I mentioned way back in October in this post, our doctors here in Hong Kong thought that she may have a hemivertebra and if so, it could potentially be removed buying some time before we need to put in growing rods. Dr Mackenzie disagreed but ultimately, our doctors here "needed" to see for themselves. 

Today, I picked up the CD with the CT scan and here are the images of Maddy's spine:

Front view:

Side view:

The verdict is, there is no hemivertebra. Several of the vertebrae are "wedge shaped" but there is nothing that we can do surgically to prevent or delay the need for growing rods. Apparently this kind of scoliosis is one of the hardest to correct, and it's further complicated since Maddy is so tiny. The doctors here need to take some time to discuss an approach to the surgery, but we may be looking at needing growing rods put in within 6-12 months. That is one surgery I am NOT looking forward to! Once the rods are in, it means surgery every few months to lengthen the rods until Maddy stops growing. We have our next appointment in August (since we will be in Australia for a month, leaving in 3 weeks time) so we will find out more then.

Maddy has been complaining of back pain more frequently and seeing these images worries me! Please keep her in your thoughts and prayers, as well as the rest of our family. Going into this is quite stressful and worrying. I know ultimately she is a tough cookie and we have to do what we have to do - but I wish we didn't have to deal with this with our three year old :(