Friday, January 15, 2016

Getting Political

It has been a while since I wrote here. I mostly share snippets of our lives on my Facebook page these days. I wanted to share something that is too long for Facebook though.

Since moving back to Australia, I have been slowly navigating the medical system here. Now Australia is a country of high tax and high social welfare but I have noticed discrepancies within that social welfare system that was worth writing to a few politicians about. So I sat down and blurted it all out and sent it off to six different politicians, including state and federal ministers of health, ministers of disability/social services as well as my own electoral representatives. Since it's the longest thing I've written for quite a while, I might as well share it on here as well.


Dear Minister,
Please allow me to introduce myself. My name is Nicole and I am the mother of three daughters; Lana (7), Madeline (5) and Briella (2). My husband and I were living in Hong Kong when they were born and we all are Australian citizens (I was born here, my husband was naturalised in 1988 and my daughters are citizens by descent). My younger two daughters, Madeline and Briella, are both affected by a rare and debilitating form of dwarfism called diastrophic dysplasia. 

Diastrophic dysplasia significantly affects a person’s mobility, although there are other issues associated with this condition. Many people with this condition also have hearing loss (of my children, Madeline’s hearing is unaffected; however, Briella has mild to moderate hearing loss). Despite this, this condition is a physical (rather than mental or cognitive) disability, and people with diastrophic dysplasia have every potential to develop into contributing members of society – provided that they are born into a society which both accepts them and accommodates for their differences.  For example, one man with diastrophic dysplasia in Brazil is a well-recognised geneticist. A Sydney man with this condition was a lawyer. It is my hope and goal that my daughters will grow up to similarly contribute to society. 

Part of the reason for our move back to Australia in December 2014 was the recognition that Australia would be a society in which my daughters would be able to develop best into independent adults. In Hong Kong, we paid relatively less tax but there is minimal social welfare for those who need it. By contrast, in Australia, our tax is much higher but the expectation is that those who need assistance should be able to access funds for their needs. Disability is something which can affect any person or any family at any time and rightly should be funded by taxpayers’ money. 

Upon moving back, I was overwhelmed at the level of support here compared to Hong Kong in many areas. In particular, one area of which I would speak very highly of is the support provided for children with hearing impairments. Briella was diagnosed with mild to moderate hearing loss and was provided with a $3,000 hearing aid within two weeks. In addition, we attend the Royal Institute for Deaf and Blind Children (RIDBC) weekly for individual sessions to assist her to catch up with her language development which was delayed both due to the hearing loss and also due to her cleft palate. She also attends a group session at RIDBC every fortnight where she can interact with other children her age with hearing impairments. For all of this support, we pay virtually nothing at all (all we do pay is a minimal fee to Australian Hearing, which covers all maintenance of and batteries for the hearing aid). If Briella ever damages or loses her hearing aid, it will be replaced at no cost to us. 
There is one area of need, however, which I feel is remarkably lacking in support – and that is mobility. Madeline can walk independently; however her legs are extremely short and her joints are restricted, so because of this she is mobility-impaired. Within a room or a house, she is mobile without any assistance; however over a larger area (for example, a trip to the grocery store, or an hour at the mall), she needs the aid of a walking frame so that she can walk independently. The walking frame helps her with stability (she is prone to falls) and it also improves her speed and endurance since she can bear weight on it with her upper body as well. However, even with the aid of a walking frame, she does not have the stamina for a full day on her feet and as such, she also needs a wheelchair for those longer days out (for example, a trip to the zoo). 

When we moved back to Australia, we attempted to begin the process early (in February 2015) to ensure that she would have a device when she enters kindergarten (which would be at the end of this month). It took several months to trial several different wheelchairs and choose which one best fit her needs. We finally submitted the application to EnableNSW in August 2015 (six months after we first began the process), and it was approved quickly, but we were advised that it takes several months for funds to be available for this and that we should not expect to have the wheelchair for about a year.

Given that Madeline needs both a walking frame and a wheelchair, in April 2015 we separately also began the process to get a walking frame for Madeline, and we were told to hire one from the hospital while we were waiting. The walking frame that we have hired is not ideal for Madeline but it is better than nothing. However, by this time, since we had already applied for Madeline’s wheelchair with EnableNSW, we were advised that for her walking frame, our only options were to submit applications for funding with various charities (such as Variety) or to pay for the walking frame ourselves. We are still waiting to hear if our application for funding with Variety is successful or not, but it is looking unlikely that Madeline will have any mobility device of her own when she enters kindergarten at the end of this month.

Comparing the funding available between mobility impairments and hearing impairments, I have to ask why is there no better funding available for children with mobility impairments? Why are children with mobility impairments forced to wait for a year or longer for a device that will increase their independence? Shouldn’t a child in this country be able to enter kindergarten and be able to independently navigate their school campus and field trips?

I suggest that investing in devices for children with mobility impairments is a worthwhile investment. For one, walking frames are significantly cheaper than hearing aids. They are also less likely to be lost or damaged by young children (Briella has already damaged her hearing aid by putting it in her mouth). The amount of independence that they can give to a child is life-changing for them. Mobility is just as important to a child as hearing is, as without mobility a child cannot independently participate with his or her peers at an age-appropriate level. Why is there not better funding for such children?

Briella is not yet walking independently but at age two, she decided of her own accord to take over her sister’s walking frame. With it, she took her first steps. (Sadly, no professional ever suggested to me that it may be beneficial for her to trial a walking frame.) Since she began using her sister’s walking frame, she has grown in both strength and independence. She now will ask for the “walker” and use it to navigate our house. It also allows for her to be in the age-appropriate position - standing upright on her feet. Prior to this hostile takeover, she could not stand independently at all. But now, within a relatively short period of time, she has learned to stand independently for up to a minute or two. If a walking frame had not been available in our home already, she would have been disadvantaged.

My children have the benefit of well-educated parents who push their doctors and therapists for these devices which increase their independence, but what happens to children who don’t have that? They end up being far more disabled than they ever needed to be. They are disabled by a lack of funding and by a system which does not seek to give children the mobility aids that they need. And in turn, these children are more likely to have unequal access to education and less likely to have high career aspirations. This may result in them ending up relying on government pensions for life. Giving children independence at a young age can only benefit them throughout their entire life. I hope that my children succeed at schooling and end up in well-paying jobs so that their taxes can contribute to a system that has helped them when they were young and needed it. 

I write this to you two weeks before Madeline is due to start kindergarten. She will very likely start kindergarten without an appropriate walking frame or wheelchair and as a result, will find it difficult to navigate her school campus. She will not be able to fully participate in field trips or other class events because mobility is not worth funding and it is considered acceptable for a child to wait a year for independence. I find this extremely disappointing and unacceptable and would love to have the opportunity to further discuss these issues with you at your convenience.

Yours faithfully,


Tuesday, March 24, 2015

Like us on Facebook!

Life in Australia is hectic! We have been back for nearly 3 months, have been in our own place for around 2 months, and are coming to the end of the first term of school for the year. Lots is happening medically with Maddy and Briella but yet I haven't found the time to update this blog at all! Instead, I had the brilliant(?) idea to start a blog Facebook page where I can post little snippets of things as they are happening. I think that will be easier for me to stay on top of things. I do still want to share our journey with diastrophic dysplasia but in an achievable way! So please, if you are still following this blog after my months of silence, pop over to Facebook and like us there - the link is

I probably will still post here from time to time if I feel more like writing an essay instead of sharing a quick picture - but it is getting less and less frequent 

Looking forward to seeing you there!

Saturday, December 13, 2014

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.

Tuesday, November 25, 2014

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!

Thursday, November 13, 2014

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)

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!