Wednesday, February 26, 2014
Unlike Maddy, Briella has been "blessed" with the typical diastrophic clubbed feet.
Currently, the most effective treatment for clubbed feet is the Ponseti method, which involves casting and re-casting the feet weekly to stretch the tendons and ligaments into their correct positions. Diastrophic clubbed feet are not typical, but this kind of casting can help. There are a few problems with casting diastrophic feet, however - the feet and legs are tiny tiny tiny, and most diastrophic clubbed feet have very tight Achilles tendons causing the feet to point downwards. These issues combined can make it very difficult for casts to stay on the feet.
For the past three months, we have been using an adapted method which involves using physio tape to pull the feet into a better position, along with stretching the feet multiple times a day. Using this method, we have seen some improvement, however it is not reasonable to expect that this method could produce the same results as serial casting. Our ortho thinks we have achieved close to the limit of success with this method alone.
Many kids with tight Achilles tendons (including kids with diastrophic dysplasia) can benefit from a tenotomy. This procedure involves snipping a bit of the Achilles tendon in order to loosen it. We've known for a while that this would be a necessity for Briella - and at our appointment with our orthopedic surgeon yesterday, he scheduled it for next Thursday, March 6th.
As far as procedures/surgeries go, this is very minor (I'm not even sure whether to call it a "surgery" as she will not need a general anesthetic even - she will have sedation and a local anesthetic). There is even a youtube video of the procedure which I will not link here. After the procedure, the casts will be better able to stay on Briella's feet as the feet will be able to be "flat" rather than pointing down.
While this will hopefully be great for Briella's feet (and therefore her future ability to walk), it will provide some logistical issues as currently, I mainly carry her in an infant carrier which probably is not suitable for use with casts. We might have to start using a stroller more, which provides other logistical issues - but such is life in Hong Kong!
Please keep us in your thoughts and prayers over the next week or two as we prepare for the procedure. Hopefully we will have great success, and the casts will now be able to stay on Briella's little legs. It shouldn't be terribly painful or uncomfortable for Briella, however she might not like the idea of having the casts!
Posted by Nicole at 11:13 AM
Saturday, February 8, 2014
It has been a long time since I updated the "Maddy's Story" page on this site - last update was in May 2012 before Maddy's cleft repair! At the time, she'd only recently begun to walk, and I was stressing over her speech issues. We still weren't even sure whether or not we would have another child. It definitely was way past time for an update!
So if you'd like to hear our new, much brighter "medical story", go and check it out here.
Posted by Nicole at 12:53 PM
Tuesday, February 4, 2014
I started this blog, "Holding onto Hope", when I was in such a dark place - unsure of the future, unsure as to whether we'd be bringing a baby home from the hospital. When Maddy was born, we were still "holding onto hope" as we learned how diastrophic dysplasia would affect our lives. As Maddy has grown and blossomed into an amazing three year old who already has exceeded the doctor's expectations, we are no longer in that dark place any more. "Hope" isn't something that we have to search for and cling to so strongly any more. Hope is all around us.
When Lana, my oldest, was born, we decided we'd give our kids first names that we liked, and "sentimental" middle names. We were tossing up between passing on "Joy" (my middle name), or "Anne" (my mother is Dianne and Bernard's grandmother is Anna). We chose "Joy" mainly because it sounded better with "Lana".
We had planned to continue this with Maddy, using family names, but through the trauma of the pregnancy, "hope" was something that was so important to us. It was only natural that she would become "Madeline Hope" - breaking our tradition, but yet starting a different one.
With Briella, "Faith" was the most natural choice. In fact we chose it before we were even pregnant with her. The bible says that "Faith is the confidence that what we hope for will actually happen" (Hebrews 11:1) and this suits our experience with Briella so much. Our hope with Maddy was so vulnerable - the odds seemed against us all the way. With Briella, our faith is confident - we have walked this road before and know that it goes somewhere good!
For a while now, I've felt that the title "Holding onto Hope" didn't really fit where we are at this stage of our lives, however I haven't been blogging as much and haven't been bothered to change it. And then there was the question of what to change it to?
"Faith, Hope and Joy" reflects our family so much better, where we are at today. We aren't in that dark place any more. We are in a place of joy and confidence in the future. We still have concerns and worries, but far less than three or four years ago. I still plan to use this web address rather than moving the entire blog over to a new address, and I'll continue to post both medical updates for Madeline and Briella, and about how dwarfism affects our lives.
So welcome to "Faith, Hope and Joy"!!
Posted by Nicole at 4:26 PM
Thursday, January 30, 2014
Yesterday, I got an email from a friend of a friend whose son has just been diagnosed with cerebral palsy. Her main question was how to access the public services here.
Now my main experience has been with the preschool age and so that is all that I really know about. I thought I'd write out my experience here so that it might help other parents of preschool children newly diagnosed with a disability here in Hong Kong.
In Hong Kong, there are two very separate systems in the medical world - public and private. In the private system, things are very expensive but move along very quickly. In the public system, there are occasionally long waits for a particular service, but on the other side it is virtually free. In addition, many of the highly qualified specialists are in the public hospitals (which are university hospitals), so for us, we NEED to be in the public system (also we can't afford to do everything private as our insurance would reject just about everything as it is a congenital condition).
So if a parent here suspects that their child has special needs, what should they do? (for me, this step was different as my girls were diagnosed in utero and were "born into" the system pretty much!) - the best way into the public system for kids with developmental delays is through the MCHC. These clinics conduct developmental checks and can refer you to a specialist if delays are found. Often the specialist developmental checks are conducted at Duchess of Kent Children's hospital. If tests are to be run to confirm a diagnosis, sometimes it is better to see a private doctor for these tests if finances allow, so that a diagnosis can be made quickly.
(Note: I've also found the Child Assessment Service online which may be helpful - they take referrals from medical practitioners and they have a team of therapists, medical social workers etc. I'm sure this would be another way into the system, however I have no experience with them, and they appear to only be on the Kowloon side of Hong Kong).
Once a disability is confirmed, a doctor at a public hospital can refer the child to the relevant therapies in a public hospital. The most common are physiotherapy (for gross motor skills) and occupational therapy (for fine motor skills and also oromotor training). In general, children here aren't referred to speech therapists in public hospitals here until they are closer to age 18-24 months. It is important to obtain these referrals early as the waiting times are long, and in addition if the child is put on the waiting list for other special services, they are ineligible to apply for therapy services in the hosptials - however if they are receiving therapy in the hospitals, they are eligible to continue to do so until a place is available in a special needs preschool placement.
After public therapy is arranged, the next important step is to ensure that the doctor provides a referral to the medical social worker at the hospital. The social worker will be able to help you with two things - firstly, the application to government subsidised preschool rehabilitation services and secondly, the application for the disability allowance.
The preschool rehabilitation services are available to any child who needs two or more kinds of therapy. In some cases, I know of children who could have benefited from the services, however they did not apply until it was too late. There are multiple options that a parent needs to look into, including integrated kindergartens, residential care and early education training centres. More information is provided on the link above. Not every child will be eligible for every kind of service, and the medical social worker will help you to figure out what is best for your child. Of all the options, ONLY the early education training centre is available in English, and within that category, there are only two options: Watchdog or CDC. Watchdog is much cheaper than CDC, but has a longer waiting list. If you choose Watchdog, be sure that the medical social worker ONLY puts down Watchdog on the form, otherwise you almost definitely will get into CDC first (even if it is your second preference) and won't have the option of going to Watchdog at all. Both Watchdog and CDC have private programs that you can enter while you are on the waitlist for the government subsidised program if that is important to you. You can do this in addition to, or instead of, public therapy that is provided through the hospitals.
The disability allowance provided by the Hong Kong government is not highly significant (I believe it's around $1500 a month for regular disability allowance, or $3000 a month for "higher" disability allowance). It also provides a significant tax-break by claiming a "disabled dependent allowance". The value of this tax-break could be up to $22,400 per year, depending on your income. And let's face it, having a child with a disability is expensive so if we are eligible for a little assistance, every bit can help.
Another thing you may be interested in applying for is the disability card. Any doctor, public or private, should be able to assist you with this application, AFTER you have either received a disability allowance, or you are on the waiting list for the preschool rehabilitation services. Maddy has one, although to be honest we haven't used it much yet. The main thing we have used it for is to flash it at bus drivers who ask us to fold Maddy's stroller - it is much more convenient if we can park it in the wheelchair area of the bus, and I feel it is safer for her as well.
Finally, one thing I have not yet done, but will definitely look into if we ever get a car is to apply for a disabled person's parking permit, or parking certificate for drivers who carry people with mobility disabilities. I'm not sure what the difference is, or exactly how they work (there are some disabled parking spots available around the city, as well as free metered parking and cheaper parking elsewhere), but the forms are available from the transport department.
So in summary: if a child in Hong Kong is suspected to have a disability, the first step would be to look for a diagnosis either within or outside of the public health system. Secondly, get a developmental check up by the MCHC (or maybe CAS?) who hopefully will refer you to a specialist. From that specialist, get referrals to public therapy services, if you want that. After that, get a referral to the medical social worker who can assist you with applying for rehabilitation services and the disability allowance. The disability card and parking permit are "optional extras" but could be hugely beneficial if you have a heavy toddler with mobility issues.
Knowing what you are meant to do can help to speed things up - for example, it wasn't until Maddy was seven months old that she was put on the waiting list for the early education training centre, and it took multiple appointments with the social worker to figure it out. With Briella, I knew about the long wait and insisted on putting her on the waiting list as soon as I met with the social worker. She was added to the list when she was weeks old and likely will be able to access these services for a full year more than Maddy as a result.
I'd love to hear other people's experiences, so please if you have anything to add to this, please let me know either by commenting below or emailing me at nicolejoy81(at)gmail.com
Posted by Nicole at 11:44 AM
Thursday, January 23, 2014
I can't believe it has been five weeks since I last updated! If I could summarise the last five weeks, it has been extremely busy - but wonderful.
Having Briella has been my easiest "newborn" period in many ways. When Lana was three days old, I came down with Bell's Palsy which lasted for the next 2-3 months and was very very difficult for me. I joked that I didn't have postnatal depression, but I did have "Bell's Palsy depression" and in retrospect, I probably did. With Maddy, we were dealing with NICU and in addition, were still learning so much about dwarfism and about her future that it was overwhelming at times. That time around, I had "NICU depression". With Briella, however, I was prepared for it to be rough at first - and my expectations were exceeded since she was home so quickly. Briella is my first child with whom I didn't spend much of the first few months in tears! And that feels really good...
We had a wonderful Christmas with my family - mostly just hung around at home and didn't do much of anything. Great company, good food - it was really nice.
As soon as January started, my schedule became nuts. In addition to all the doctors appointments, I'm in the middle of applying for Briella's Australian citizenship and passport, as well as my Hong Kong permanent residency. In terms of medical appointments, between the whole family, we have around twenty appointments for January - up to three a day. Many days this month, I have been at the hospital for over three hours.
Life with a newborn is always exhausting - night feedings are not easy on anyone. Although Briella is my third baby, she's only my second newborn, since Maddy was discharged already sleeping through the night. I'd forgotten how rough it can be! In addition, I think Briella has a bit of mild reflux and many days goes through periods of time where it is extremely hard to settle her.
If you have just one baby, you can sleep all day if you want - or at least get a good sleep in a few times a week. With three, that is much harder. With three and a hectic schedule, it is near impossible. We are surviving though, even if I'm somewhat delirious at times.
In terms of what is happening medically with Briella, we have seen many doctors and they are FAR more relaxed in general than they were with Maddy. Her breathing is stable, her feeding is improving, she's growing and getting stronger. With Maddy, there was a great deal of concern about flying. With Briella, we have already been cleared to fly and we are planning to go back at Easter. The doctors will see how she is closer to that date and decide whether or not we should prepare supplemental oxygen for the flight, but either way she is safe to fly.
Many of our appointments with Briella currently are focused on treating her clubbed feet. Typical treatment involves putting both feet into casts which go up to the thigh - however since Briella's legs are so tiny, the casts will likely fall off quickly. Instead, we have been using physio tape to stretch her feet into a better position. While this is not as effective as casting, it will at least stay on her feet. In addition, I need to do daily stretching exercises on her feet.
In the next few months, we will continue to see how her feet go with this course of treatment. As she grows, we may start casting her feet instead. In addition to casting, she may need to have a procedure to lengthen the archilles tendon which is extremely tight.
I've started so many blog-posts in my head but never get a chance to sit down and put them all into a coherent post. I'm sure our lives will continue to be slightly crazy over the next few months but I hope to update when I can.
Posted by Nicole at 8:45 PM
Tuesday, December 17, 2013
It has been a wonderful week at home since my last post. Briella is a sweet little newborn who mostly sleeps very well - although she can be a lazy eater. She's very easy going, and we've been out and about quite a bit. She snuggles into the Boba Wrap carrier (which I LOVE!) and sleeps almost the entire time we are out of the house. Now that she is three weeks old, she is more alert and enjoys observing whatever is going on around her.
Last Friday, December 13, we went back up to the hospital and Briella was formally discharged. We were given not one or two follow up appointments, but TEN of them. Such is life with a newborn with special needs! Because of the holidays, they don't start until after the new year - but January is going to be a very busy month for us!
On Friday, we saw our orthopedic doctor as well. The most immediate concern is Briella's feet. We plan to do some taping to see if that will help, and in the new year we will probably start casting. Both of these involve manipulating the feet into a more "neutral" position, and then using tape or casts to hold the feet in that position. This will be repeated weekly or so, and hopefully over the long term, the position of the feet will improve.
When Maddy was discharged from NICU, it was also early December. This is the peak season for colds and flus, and as such, the doctors recommended that she have the vaccine for RSV. RSV is the main cause of pneumonia and bronchiolitis in young children, and children who are at risk (such as those who like Maddy and Briella have airway malformations and restricted lung capacities) are advised to have the vaccine. It's not a true vaccine which causes the body to create antibodies, but rather an infusion of the antibodies themselves. Every season, a child needs five shots and when Maddy was born, these shots would have been paid out of pocket - for a total cost of HKD$40,000!! (about $5,000USD/AUD). At the time, we couldn't justify the expense. Fortunately now, that cost is covered by the public health system here in Hong Kong (only for at-risk children) and so Briella will be able to get those injections for free and we can sleep a bit easier this flu-season! (particularly since this time last year, Maddy was hospitalised with bronchiolitis).
Friday was a busy day - in addition to our time in the hospital, and also attending Lana's school Christmas concert, my parents and sister arrived in Hong Kong to spend the holidays with us! It has been wonderful seeing them again, and for them to meet little Briella. Every day I am amazed at how blessed we are that she is healthy and strong and HOME!
Last week, we took Briella to have some professional photos done. I'll finish up this post with some of my favourites :)
Posted by Nicole at 8:22 PM
Tuesday, December 10, 2013
Today, Briella is two weeks old. It is crazy how fast the time has gone - but in other ways it seems as though she's been with us for far longer than that! We are loving having her at home, but it is exhausting! She is still learning to eat and so feeding her takes a lot of time and energy. On top of that, I'm pumping breastmilk for her as well, which also is demanding. I'd forgotten how much work a newborn is - I haven't had a newborn at home for over five years, since Maddy came home much later. It is all worth it though!
Yesterday, we went up to the hospital again - I thought it was to be discharged, and for some reason I was expecting to get up there, talk to the doctors straight away and then leave within a couple of hours. It wasn't anything like that though! I arrived at 10am and was promptly told to wait outside of the ward since it was not visiting hours. The nurse told me that she would call me by 3pm to let me know "if Briella had to stay, if she was given more home leave, or if she would be discharged". Not what I was expecting! I posted on Facebook and had a few comments about how the nurse sounded nasty, and in some ways it seems that way - but it is just the difference in culture here. Sometimes it sucks - but she wasn't being cruel or rude, just following protocol and letting me know all possible outcomes. Regardless, it was very impersonal and lacked any kind of warmth that you might get in a Western hospital.
To cut a long story short, after a few hours, Briella was given more home leave and so we have to go back up to the hospital on Friday to repeat the above experience. At least this time I know what to expect! I think if all is well, she will be discharged then. She is doing very well at home, but she is still not yet back up to her birth weight and I think that is the main thing they want to check again. The feeding issues can make it harder for little ones to put on weight - so we need to keep making sure she's drinking enough every day!
In other "news", Briella's ear started "bubbling" yesterday. Most kids with diastrophic dysplasia develop cysts on their ears within the first few weeks after birth. They stay swollen for a few weeks and then harden, forming "cauliflower ears". The cysts can be treated by a variety of different methods, including compression or draining the fluid. When Maddy was in NICU, hers were treated primarily through compression - you can see some of her head bands in this post here. For Maddy, it kind of worked - her cysts are mostly flat, but they do have a bit of scar tissue in both ears (you can see the end "result" in the header of this blog). For Maddy, however, the compression bandages ended up forming a pressure sore behind one of her ears, and also started misshaping her head, so the doctors decided to stop. We'll see what happens with Briella's ears. She was born with perfect ears so hopefully they don't scar too badly!
Here's a few phone-pics for you to enjoy:
Maddy's NICU file is kept on Briella's bed - the doctors and nurses had to review her case in preparation for Briella's birth. Briella owes Maddy big time - I'm positive this is the reason why Briella had a far "easier" time in NICU than Maddy did.
This is what happens when you have older sisters ;)
Posted by Nicole at 10:44 PM