Wednesday, March 12, 2014

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!

Wednesday, February 26, 2014

Tenotomy scheduled

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!

Saturday, February 8, 2014

Updated "Medical Story" page

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.

Tuesday, February 4, 2014

Faith, Hope and Joy

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"!!

Thursday, January 30, 2014

Public services for children with disabilities in Hong Kong

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

Thursday, January 23, 2014

Briella - 8 weeks

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. 

Tuesday, December 17, 2013

Three weeks

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 :)