Farewell, my Hong Kong

The title of this post comes from this amazing gift that some special friends got me for a farewell. This group of friends were my mothers group who I met when I was pregnant with Maddy. Some of them, I had met before that 17 week mark, before we knew there were any issues with the pregnancy, before I even started this blog. Before our lives changed. After that moment, for months I wanted nothing to do with this mothers group and their healthy babies and happy lives (particularly when I wasn't certain I would be bringing home a baby at all - and what place does a childless mother have in a mother's group?) but slowly I was able to move past that - particularly as Maddy grew and thrived and I realised that I too had a healthy baby and a happy life.

When I first unwrapped this gift, I thought it was beautiful, very "Hong Kong". It wasn't until I got home later and showed Bernard that I recognised the scene. Man Mo temple, Ladder Street, Hollywood Road, those steps that I walk up at least twice a week to pick up Lana from school. This week when I picked Lana up, I had to take a photo.

Today, we had our last ever appointment at the public hospital. And like that, we're done with the system. I'm glad that we can move on hopefully to greener pastures. But it is a bittersweet change. It's not easy saying goodbye to the place you've lived more than eight years of your life. This is the place I became a mother. When I arrived eight years ago, a 25 year old newlywed with wide eyes and hopes and dreams, I didn't know how this place would change me, would suck me in and become my home. There are times I can't imagine feeling this much at home anywhere else in the world.

But I know that I will - home is where the heart is and when we move, our hearts will move too. We will grow new roots, make new friends, have new experiences - both good and bad - that will continue to mould us and change us. 

Lana said to me the other day, "Sometimes I feel like I have two hearts - a Chinese heart and an English heart. My Chinese heart is at home in Hong Kong and my English heart is at home in Australia". So it is with all of us, I feel. We are at home in two places and never completely home in either. 

In 10 days, the movers will come and most of our belongings will make their way back to Australia. In 14 days, we will be making our way there too. 

A new start, a new chapter.

Farewell, my Hong Kong.

Briella's cleft surgery

Last Friday, Briella had her cleft surgery. I was hoping that this surgery could be performed in Australia shortly after our move, but when we knew it could take several months to organise, and when our doctors here were prepared to do the surgery before our move, we decided it was in her best interests to have the surgery done sooner rather than later. Knowing this would mean one (hopefully) last hospitalisation in the public system here in Hong Kong, I was a bit apprehensive but hopefully - for some areas of Briella's care, I've found that (slow) progress has been made in the system since a few years ago. The public system one last time did not fail to disappoint us and as a result, will (actually for the first time) be receiving a formal complaint from us. This is a summary of the last week or so. 

Last Thursday, we were admitted bright and early for Briella's pre-op checks.  The ward has been recently renovated and was more spacious than a few years ago with a decent cupboard for each bed rather than the tiny lockers they used to have. They still only have plastic chairs however, with no bedding provided for parents who are required to stay the night. They also don't have enough curtains for each bed, as it is "against policy" for the curtains to be closed except for if a procedure is being done.

On the cards for the day we needed to have an ear/hearing assessment with the ENT to decide whether or not she needed grommets (ear tubes), then just a quick check with both the surgeon and the anesthetist. The hearing tests were surprisingly good - a few months ago, Briella had fluid in each ear and hearing loss as a result. On Thursday, however, there was no fluid! As a result, when we had the surgery, they did not insert grommets. On one hand, I was thinking maybe they should just as a precaution - but after the cleft repair, the ears should theoretically drain easier - so there was no need adding an unnecessary procedure. 

After a quick check by the surgeon and anesthetist, we were free to go home for the night. Unlike Maddy, they were happy to not draw blood from Briella before the surgery - which I was thankful for as my girls have difficult veins and I didn't see the point in inflicting any unnecessary trauma! Also unlike Maddy, Briella ended up being the last surgery of the day rather than the first (estimated around 1pm). At first, I was concerned about it, but in some ways it ended up being a good thing.

On Friday morning, we were able to feed Briella her breakfast and then one last drink of milk - then she was allowed clear fluids (including apple juice) until 11am. She was actually surprisingly content until 1pm which is when the surgery was meant to begin - so if it had've been on time it would have been a really easy morning! Unfortunately however, they weren't ready for her until closer to 2:30pm and after close to an hour and a half of crying and screaming, Briella had completely crashed.

As Briella was sleeping when they were ready for surgery, I just dropped her off and left - unlike Maddy who I stayed with as they gave her the gas to put her to sleep. I told the anesthetist that we wanted to be there when she woke up and they said ok, and asked us to wait outside in about an hour or so. The surgery was expected to take between 2-3 hours. 

Bernard and I wandered for an hour before going back to wait outside the operating theatre. There is no "waiting room" for parents or carers, only chairs in a busy corridor. We were waiting and waiting, and then at around 5:15 (2 hrs and 45 minutes after I'd dropped off Briella) the surgeon came out. He advised us that the surgery was a success. I asked if we could go and see Briella and he said they were going to be moving her to recovery shortly and they would contact us then, we should just continue to wait where we were. 

This is where it all started to fall apart - it was taking ages and ages, so we were worrying that maybe something was going wrong or taking longer than they expected. Finally, 45 minutes later (around 6pm), we decided we should press the intercom button to ask after her. 

When the ward manager answered the door, we asked him where Briella was. He said "I don't know, she's not here, no one is left on this floor. Maybe they moved her to recovery on the third floor. We have lifts inside so don't need to come out, that's why you didn't see her". For Bernard, that wasn't good enough and he insisted that the ward manager found out exactly where she was and when we could see her. He made a few calls and finally let us know "They already woke her up and moved her to PICU. She's in PICU now". 

We were both very angry and upset. First of all, they had told us we could be there in recovery when she woke up. Not only had they not followed through with this, but they then moved her to PICU without informing us about ANYTHING. Bernard right there and then decided he was going to file a formal complaint so he stayed trying to get names of people involved and why this situation happened. I just wanted to be with Briella so I left to run up to PICU - which is in a completely different building to the operating theatres. 

When Bernard was talking to the ward manager, the ward manager ended up calling the surgeon on his phone and letting Bernard talk to the surgeon directly. The surgeon said he was surprised we were not notified, that this was an isolated incident and that it goes against normal protocols. He also later told us that the reason we were not informed was that their primary concern was getting Briella into PICU as soon as possible so her breathing could be monitored there. 

When I finally arrived at PICU (around 6:15), they would not let me in as they were in the middle of taking blood from Briella. I told them I wanted to be there for it but they would not allow me in until the procedure was over. I was allowed in around 6:30 (she'd probably been awake for an hour or so by that stage) and as soon as Briella saw me, her little face crumpled up and she started sobbing. She had done so much sobbing that day that she didn't even have a voice left. It was one of the most pitiful things I've ever seen...

The whole time in PICU felt like one big fight. They weren't going to let me hold Briella and I told them "she's my daughter, if I want to hold her, I will hold her. I was allowed to hold her sister in the recovery room after her cleft surgery - I don't see why I shouldn't be allowed to hold Briella in PICU now - particularly if she is crying and needs comfort!" I had words with so many of the nurses there - none who were apologetic for their lack of communication and disregard for our wishes - even though they did acknowledge that we should have been informed rather than having to hunt down our daughter. The visiting hours in the PICU are the same as in the NICU - only 12-1pm and 3-8pm. So when Briella fell asleep just before 8pm, we went home for the evening. 

I only told a few people about what happened to us after the surgery - I was so upset about the whole situation that I just didn't want to "go there" again. One of the people I told was a mother of a little boy with special needs, and so much for our situation being an isolated incident, almost the exact same thing happened with her only a few months ago, when her then 7 week old had surgery. It makes me so angry that we are not the only people to have had this experience, and if I know another person with a similar experience there, how many more people has this happened to?  It also makes me mad that all the staff we talked to about it seemed to say it was rare for that to happen. Is it just coincidence that I know possibly the one other person who had the same "isolated incident" as us?

The next morning, there was no way I was going to go until noon without seeing Briella. I just don't think that is healthy for a young child to be isolated after a surgery which is in and of itself, a traumatic experience. They need to have family around, a familiar face, someone who will care if they are sad or need a hug - and from what I've seen of NICU and PICU, it is not the nurses' job to make the kids feel happy, safe and secure. Nurses can never do all that for each child in the hospital. 

Bernard called the hospital around 8:30 on Saturday morning and found out that Briella was stable over night and would probably be transferred to the surgical ward around 2pm. They also reminded him on the phone that we would not be allowed in until noon. That did not stop me from going up to the hospital around 9:30. 

At the PICU, I rang the bell and told them that I felt Briella needed to be with family more than she needed to be there - particularly as we knew she was stable and would be leaving PICU that day anyway. I told them "I will be with her one way or another, either you can let me in, you can transfer her to the surgical ward now, or I will discharge her against medical advice". It again turned into a big conversation with a doctor there in which I accused them of not having the patients' best interests in heart, only caring about their physical needs and not their emotional needs, and placing the convenience of their staff above the needs of the patients. I also told her that I didn't care about their policies, I only cared about the needs of my daughter - and that their policies were wrong and wouldn't be accepted in any other first world country. I also told her that I knew the staff yesterday lied to me when they said that our situation was an isolated incident - and if they would lie to me, how could I trust them with caring for my daughter? It did feel good to get all that off my chest! 

As it was doctors rounds right then, they would not let me in but another very kind nurse told me that Briella was sleeping and calm. She also told me that they would let me in if she was crying at all. With two hours still until visiting hours, I didn't really know what to expect but I did plan to make a nuisance of myself in the mean time! After only about 30 minutes, they invited me in and then transferred her by 11am to the surgical ward.

The surgical ward was not comfortable but it was much better than PICU as someone must be with the child 24 hours a day. After our experience with Maddy, we found that I coped better with the day times and Bernard coped better with the night times so we planned that I would be there for most of Saturday and Bernard would take over in the evening. I found surgical ward to be not too bad - although it's not comfortable and it's impossible to rest there. Even Briella wasn't sleeping well and she was soooo sad looking! We were able to start feeding her fluids and as I knew her discharge would be based on when she was able to drink a certain amount, I made it my main goal to feed her as much as I could. It's not easy as she's not used to drinking without a bottle (although we did start to practice with her a few weeks ago) - and her mouth is hurting too, and she's just generally miserable so not terribly hungry. 

Bernard said the night was rough and uncomfortable and the nurses kept waking Briella up for various though. Neither of them got a lot of rest. I wanted to be at the hospital early on Sunday morning to beg the doctor for home leave (or even mention discharge against medical advice again). When I was on my way up, Briella's IV started to have problems so they took her into a treatment room, kicked Bernard out and got to work attempting to save it. A little while later, they handed her back to Bernard with vomit all over her, drenched with sweat and with a nappy that looked like she'd lost bowel control :( When I think of how much fluids she lost attempting to save an IV that was giving her 20mL of liquid an hour, it makes me mad! By that stage, she was borderline in her fluid intake and I understand them wanting to save the line, but it was removed completely only 7 hours later (140mL later) and the experience probably cost her more fluid than that! Makes me mad... 

The doctor came around not long after I was up there and he initially said that Briella wouldn't be discharged that day - she wasn't taking enough fluid. I asked him for home leave, just for the night, so that we would be able to actually rest. He in turn told me if I could get her to drink 500mL by 6pm, that we could be actually discharged that day! So the race was on...

After the trauma of the IV, Briella wasn't exactly up for drinking anything at all so the morning was pretty tough. By noon, I was thinking we might not make it and we'd need to spend another night in the ward - but in the afternoon we got on a roll and finally got down to needing to get her to drink 50mL in 30 min and we just made it! So we fed like crazy and made it, so were discharged on Sunday evening and have been recovering at home. 

The past couple of days at home have not been terribly easy - Briella is still uncomfortable and is still not feeding great. On top of that, she's pretty congested - some from the surgery and some I think from a little cold that's going around. She's waking a lot more at night and sleeping restlessly - but every day is a step forward. We still don't have our tickets back to Australia yet as the surgeon wants us to wait until the one week check up on Friday before saying when she is fit to fly. We are so glad to have this surgery over and done with and to be on the road to recovery now, and the road to being in Australia and hopefully on to a medical system which doesn't give us as much heartache as the one here!

Working towards cleft surgery

Last week on Monday, I took Briella up to the hospital for her pre-op consultation with the anesthetist. Because Briella (and Maddy) are higher risk for anesthesia, there is only one anesthetist in the whole of Hong Kong Island that they would allow to do the surgery. She is great - we've had her since Maddy was born, first met her in the NICU when Maddy was tiny. I trust her and honestly, anesthetists are in many ways the most important people in surgery when it comes to rare kids or kids with difficult airways! The only problem is that this doctor does not do outpatient clinics, so to consult with her, we need to be admitted to the hospital and wait for us to fit us in.

It must have been a busy day for her - we were admitted before 9am, and didn't see anyone for the entire day. At least now, I am prepared for that so we took lots of food and lots of things to do (the hospital doesn't feed the parents so we are on our own!) I did start to get worried when it was getting close to 5pm, so I went back to read what this stage was like with Maddy (I re-read these three posts in particular - first, second, third). Maybe that was a mistake because that was an awful experience!

It was just 5pm and immediately after reading the above posts that a nurse came to talk to me. Mind you, this is after 8 hours at the hospital, in which time we saw no doctor at all. She said "I'm sorry but I'm not sure if the doctor will be coming around tonight. Would you like to take home leave and come back at 9am tomorrow?" I told her "I would NOT like to do that, I have already been here for 8 hours and have not even seen one doctor. My time is valuable as well and I cannot just give up days without even being able to see a doctor at all. I am extremely busy this week and I will need to see the doctor today." I think before, when Maddy was born, I wouldn't have been assertive enough to say that - I would just get upset and angry. Now I am more able to firmly but politely say what I need to say. After about 15 minutes, the nurse came back to me and said "Ok the doctor will come tonight, but I don't know how late it will be". Even staying until late at night seemed preferable than coming back for another full day so I was happy with that. 

A while later, our surgeon came around. I'd seen him recently so he didn't really check Briella out much. He did let me know that they would be trying to book November 21st for her surgery date, but it would be subject to availability. 

It was about 6:30 when the anesthetist showed up. She looked Briella over and gave us the green light. Briella's airways are stable (but still small), her oxygen levels are good, and the MRI of her spine showed no complications for surgery. So with that green light, all that was left was to wait for the call from the hospital.

When I hadn't heard back yesterday (9 days before the potential surgery), I decided to email the doctor. He'd put in all the requests but hadn't heard back yet. With our move coming up quickly, so much is revolving around getting this surgery done. 

As we are renting, we needed to give our landlord 2 months notice - so we already need to vacate our apartment by Christmas eve. The movers are coming on the 20th to pack up all our stuff. We still don't know if we will have Christmas in Hong Kong or Australia, as the surgeon has said we shouldn't travel for around 4 weeks after surgery.

Today the surgeon got back to me and he was able to book the surgery for the 21st, so in 8 days, Briella will be having her cleft repair. I'm not expecting it to be easy or fun - she will have some time afterwards in the PICU which is right across the hall from the NICU and that always brings up bad memories. While she is there, we will have to abide by their ridiculous visiting hours and policies. Hopefully she has no complications and is only there for a minimal amount of time. After that, she will be sent to the pediatric surgical ward for a few days. That also was quite rough with Maddy. Unlike PICU, parents are not only allowed - but they are expected to be there 24/7. Parents are the ones who will do all the care and feeding for their child. That would be fine if parents were catered for, but they are not. There is minimal space and only a plastic chair to sit or sleep on. No blankets or pillows. It's not easy to look after a child recovering from surgery when we are not able to look after ourselves! In addition, after the surgery, Briella will not be able to have a bottle any more. She currently almost always will fall asleep with a feed, and while she's getting better at cup feeding (we practice every day), she's not really ready to give up the bottle completely.

All that said, I do think it's in Briella's best interests to have the surgery now. If we waited to do it in Australia, it could be months later - and the later the surgery is, the more likely it is to have negative impact on her speech.

My mum will be coming next Wednesday to be around for a week and a half while we are in the hospital. Please keep us in your thoughts and prayers over this time. I will continue to update as we go through this :)

(And since I haven't added any pics lately, here are some random pictures from September)

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. 

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!

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.

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. 

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!

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 :(

Little People of Hong Kong

Shortly after the TVB Pearl documentary aired last September (the documentary is available on youtube through the linked post above), my friend Serene (the mother of Nathan in the documentary) decided to start the non profit organisation "Little People of Hong Kong". She has been working tirelessly together with some of the medical professionals who were involved in the documentary to get it off the ground and up and running. So far, there have been multiple events for parents, and she has also been involved in educational seminars for medical workers as well. 

I'm so glad that Serene thought to start this organisation which brings together many families affected by dwarfism in Hong Kong. Being bilingual, she also has access to the local community which I am largely unable to communicate effectively with. I would have liked to have been involved more with LPHK but with a new baby, and now two kids with medical needs, time is scarce these days! 

The website is at http://lphk.org/ and there are many pictures of Maddy there. Go and check it out. They are working on becoming a recognised charitable organisation and so will be able to give receipts for tax-deductable donations soon.

Enjoy!

Briella's dedication

Last month, when we were in Australia, we had Briella's dedication service at our home church. I did a little speech and thought I might as well share it here as well. 

Dear Briella,

I am writing you this letter on the eve of your dedication. You are loved by so many people, and most of all, by your family – your daddy, your two big sisters and me. I always said that I wanted three girls, and God saw fit to give me that desire of my heart.

It took me a while to decide whether or not to have that third baby, afraid of repeating what was a traumatic pregnancy, afraid of having to relive some of the hardest days of my life. When we finally decided to have you, God gave us you quickly – maybe he knew I might change my mind.

At first, I was selfishly hoping and praying that you wouldn’t have the dwarfism that affects your sister, but I knew deep down that God knew the perfect child for our family, and that child was you. I didn’t know it at the time, but God has already used you so much to heal me from the negative experiences that I had previously. I don’t think that would have been possible if you didn’t have dwarfism.

It took us a long time to decide what to call you. Your daddy and I often have very different tastes! We both had lots of ideas but we couldn’t find a name we both loved. In the end, your daddy said he wanted a name with “El” in it so he could maybe call you “Ellie”. I wasn’t even sure if “Briella” was a real name until I looked it up and found that it is a short form of “Gabriella”, meaning “God is my strength” – perfect for you.

We knew your middle name, “Faith”, before you were born. You see, Lana’s middle name is “Joy” – she was given my middle name, as our first born daughter. We planned to use family names for all of our children, but when we were expecting Maddy, “Hope” was something we had to cling to through some very dark days so it was only natural to give her that name. Having started a new tradition, there were only limited names to choose from and your daddy and I (miraculously) agreed that we liked the name “Faith”.

Its interesting though, the bible says that “Faith is the substance of things hoped for” – “hope” is something that is often tentative and flickering, like a candle in a dark night, but “faith” has substance and a basis for strong belief. With Lana, we had the joy of having an easy and perfectly average baby. With Maddy, we had so many worries and fears that at first, we had to choose to hope. That hope grew and grew as we saw her doing things the doctors said she would never do, and as we grew in confidence in parenting her. With you, we never had many of the same worries – we knew that you would figure out how to use those fingers that do not bend. We knew you’d walk and talk – maybe a bit slower than other babies, but in your own time you’d get there. With you, we have faith.

We have many dreams for you. We hope that you will grow up to be sweet, kind and generous. We hope you will be loyal towards your family and friends, innovative, strong and positive. Most importantly, we hope that you learn to love Jesus. Ultimately, this is your life to live. We will try to give you the tools to equip you for whatever life throws at you, but you will need to make these decisions for yourself.

Whatever comes your way in this life, we will always love you and be there for you to support you however we can. We are family, and in the words of Lilo and Stitch, “Ohana means family, and family means no one gets left behind or forgotten”.

Love always,

Your mum. 

Maddy's Spine, Briella's feet

So we're all still kicking, life is busy, I haven't forgotten about this blog. We have just returned from two weeks in Australia, which was amazing. We had perfect weather and had a great time with friends and family. While we were there, we had Briella's dedication service which was really nice but also highly unorganised. 

Briella ended up being in the hip spica for a total of three weeks. That was an experience! Even being cast up to the waist wasn't enough to prevent Briella's stubborn feet from slipping back in the cast. She needed to be recast once. Her foot began slipping a second time but it wasn't bad enough to recast her again. After the spica was removed, she was meant to be either in leg casts, or little boots (like the ones with a bar that she had overnight after the surgery) for another couple of months, but our doctors realised that it was futile since her feet were slipping out almost immediately. Instead, we are back to taping and stretching. We have very frequent physio and orthopedic appointments which are focused on her stubborn little feet, but we have had ok results from the tenotomy, gaining around 20 degrees of movement in each foot. Her right foot is now quite acceptable, however her left foot (the more stubborn one) will likely need further work done on it. 

While Briella's feet are taking up most of my time at the moment, my current main concern is Maddy's spine. We have been waiting since October for a CT scan to give us more information about exactly what is going on with her spine, and in that time it seems as though her scoliosis has gotten worse. In addition, in the past few months, Maddy has been complaining from time to time of pain in her back. Being only three, it is hard to know exactly how bad the pain is and whether it is related to her scoliosis or not. After contacting our spinal ortho, he advised us to come in for an extra appointment. The doctor there told us "given the degree of Maddy's deformity, I'm sure she is in pain on a daily basis, however she probably has a pretty high pain tolerance as well". That's not a nice thought :( He said though that he thought Maddy's pain was coming from her hips rather than from her scoliosis, however the orthopedic doctors who look after Maddy's hips disagree - they think it is spine related.

We (ironically) received the appointment for the CT scan for while we were in Australia (the only two weeks out of the last year or so that we were out of Hong Kong)! Fortunately they were able to reschedule it without waiting for another six(!!) months and the new CT appointment will be on May 20. After this appointment, the doctors will be able to have a clearer picture of the exact condition of Maddy's spine, whether or not there is the much-debated hemivertebra, and whether we need to start thinking about surgery.Our follow up appointment is on May 26, so we will get the report from the CT scan then.

Please keep us in your thoughts throughout this month as we learn more about Maddy's spine and what the plan is for managing it. Ideally, it's best to delay any major spinal surgery for as long as possible, as surgery restricts the growth of the spine. We will see what happens...

Achilles Tenotomy/Spica cast

(the above picture is Briella's feet with the physio tape that we were using to stretch her feet prior to her tenotomy)

This time last week, we were in hospital doing all the pre-op consultations for Briella's surgery last Thursday. It was a long day with lots of back and forth-ing. We saw a few orthos, as well as the anesthetist, the occupational therapist and the physio. We also had to get pre-op photos taken of Briella's feet. The plan was made to do the tenotomy with a local anesthetic as well as sedation, which would require an IV and also for Briella to fast from 3am until the procedure, which was scheduled at 10am.

With babies and surgery, I think that often the two hardest things are the fasting and the IVs, rather than the surgery itself. Babies can't go very long without milk, since their tummies are so small - and they don't understand why they are not being fed. That night, I attempted to wake Briella at 2:30am to feed her once more before she would have to fast, but she barely stirred. 

As expected, Briella woke up starving hungry on Thursday morning and screamed for an hour before she fell asleep, exhausted. It was the first of at least 5 or 6 times for the next two days that she would scream herself to sleep :( I managed to take her to the hospital without waking her and keep her asleep until it was nearly time for the procedure. 

The above picture is Briella in the smallest sized operating theatre gown that they had! I guess it would have fit an average 5 year old - it was double Briella's length! 

As expected, they had great difficulty finding a vein for the IV and after four failed attempts, they decided to abandon it and to perform the procedure under a local anesthetic only. In retrospect, I wish I would have insisted on this in the first place. It may have spared Briella from the need to fast, and it would have spared her the pain of four failed IV insertions and the resulting bruises on her tiny hands. The things I will note down in case there is ever a "next time"!

The procedure itself went smoothly, and they sent her out in the above temporary casts on her feet. Casting the feet after a tenotomy is imperative. The feet need to heal with the ankles held in a 90 degree angle so that this new range of motion is maintained. The plan was to either have a) casts, b) AFOs that would be held together with a bar, or c) a hip to toe spica cast. These options were in order of preference. Most babies have casts after a tenotomy, however for Briella, with her tiny feet and very short legs, it was questionable as to whether these would stay on.

It soon became apparent that the casts would not stay on, and therefore would not provide the best results from this surgery. Instead, they decided to make AFOs with a bar to hold the feet in position.

It was getting to the end of the working day when Briella's main ortho decided that even in these boots, her left foot, which is the more stubborn, was slipping out of her AFOs. Since the orthotic department was closing, we were given one more night of home leave and asked to come back on Friday morning. 

On Friday, we came back to the hospital and spent over an hour trying to modify the AFOs in such a way that they would stay on her feet without slipping. Each effort required stretching and manipulating Briella's ankles which were still tender from the surgery the previous day. After exhausting all options, her ortho asked me what I thought about the spica cast. I told him that we better do whatever will give us the best results from the surgery - and while I wanted to avoid the spica cast, I know we do what we have to do.

Putting the spica cast was pretty traumatic for poor Briella - it took about an hour of stretching and holding her little feet to get them into the best position. As the cast goes over both the knee and the hip, it is far less likely to slip and therefore will hold her feet in a better position as it heals.

The first night was pretty rough, with Briella being very uncomfortable and waking every hour or two all night long. She has slowly adapted, however, and is sleeping much better now. She still is far more fussy than usual and I think it is hard for her to get rid of her gas. Before, we would bend her at the hips and rub her tummy, and that would most effectively get it out. Now, her hips are locked in a mostly straight position so she can't bend.

The cast will stay on for about four weeks, at which time we will have to remove it as we are travelling back to Australia for easter. It's not recommended to fly in a spica cast as flying causes you to retain a bit of fluid and swell. Hopefully we will have good results and by that time, the AFOs will stay on Briella's feet better. She will need some casts/splints/AFOs for the next four months, full time, and after that she will need to continue to use them for nights and naps. 

Diastrophic club feet are stubborn and often have a high recurrence rate. This is just the start of Briella's "journey". Fingers crossed for a good outcome!