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...