Monday, December 5, 2011

One Year

Tomorrow, it will be one year since we brought Maddy home. Three hundred and sixty five days of her sleeping under the same roof as us, after one hundred and twenty four days of NICU. In the last year, we have had approximately eighty one different medical related appointments for Maddy, including specialist appointments, therapy sessions, etc. That's an average of one every 4.5 days. The first six months, it probably averaged one every three days, lately it's been more like one every one or two weeks. 

NICU was such a difficult time for us - and I think that only someone who has been through that would understand exactly how it feels. I also have to say that the society here in Hong Kong makes it far worse than it needs to be.

This past year hasn't always been easy, but even still, it was immensely better than NICU. The first few weeks, we were struggling to force-feed Maddy when she still didn't really know how to take her milk orally. And then we were stuck in Hong Kong indefinitely after being told that Maddy may not be safe to fly. I think that our trip back to Australia (which I STILL haven't finished writing updates about) was really when things started looking up for us. There's nothing like being home, and returning to Australia was so refreshing for all of us, in so many ways. 

Tonight as I was putting my girls to bed, I hugged Maddy a little tighter, grateful for those three hundred and sixty five nights that I have been able to put her to bed, and remembering those four months and two days that we were separated.

Saturday, November 26, 2011

January surgery

Today, we had the follow up appointment for Maddy's cleft palate. The team agreed that Maddy is now ready for surgery and we will proceed to schedule it for January after we get back from Australia. 

In the surgery, they will first be repairing Maddy's cleft palate and secondly they will be placing ear tubes to help dry out the middle ear. After this, they may or may not be able to perform the ABR hearing test while she is still under anesthesia.

There were a lot of questions that I forgot to ask - I need to learn to write them down before the appointment! I think I was more focussed on whether or not the surgery would be performed and when, rather than asking questions pertaining to the surgery itself. 

Any surgery for Maddy (or for any person with any form of dwarfism, for that matter) is more risky as the airways are often more narrow, and the overall structure is a bit different than doctors are used to. Maddy has never been intubated before, and that is my main concern with the surgery itself. For Maddy, that is probably the greatest risk... 

After surgery, the recovery may be difficult on us all. Maddy will need to be on a liquid/puree diet for a few weeks, which will be fun now that she is eating the same as the rest of us, and prefers to eat from my plate than her own! She probably won't be able to have a pacifier - which she currently cannot sleep without. And she will need to have her arms splinted so she can't put her hands, or anything else in her mouth. Although knowing Maddy's arms, I'm not sure how successfully they can be splinted - and even when they ARE splinted, I bet she could still get some stuff in her mouth regardless ;) 

We do not yet have a date scheduled - the hospital will be calling us to let us know when to come in. But please keep us in your thoughts and prayers over the next two months as we go ahead with this surgery. 

As a funny side-note, while we were waiting for our appointment, Maddy was scooting all over the room. She was the centre of attention - people were smiling at her, waving, clapping... One lady even got out her phone to start taking pictures of her.

Maddy was so attracted to the phone that she made a beeline for it, grabbed it and ran away ;) I think the lady was scared of taking it back and making Maddy cry, so Maddy just played with it for a good 10 minutes, taking lots of photos of her feet in the process ;)

Wednesday, November 23, 2011

First steps

The last couple of days, Maddy has started taking her first, tentative steps. The most she has taken with no hands is about 5-6, and it often ends up as a dramatic face plant which I attempt to catch (although I don't always succeed, poor girl ;) ). I have been attempting to catch a video of it, but Maddy has a video sensor and does not want to perform.

Here are a couple of short clips that I have managed to catch:

1. Maddy walking towards the camera at close range - you can't even see her legs, but I swear, she was walking a few steps, no hands! ;)

2. Us attempting to coax Maddy to perform for the camera. I don't think she takes any steps, but there is quite a spectacular face plant catch at the end - one of my finest, if I may say so myself ;)

Tuesday, November 22, 2011

Random bits and pieces

So I haven't been so consistent in updating lately. Lots of things going on, I haven't been updating so frequently.

Maddy is doing awesome and is standing for longer and longer. She will clap for herself and even do a little dance which usually ends up with her falling back on her bottom. Sometimes, however, she topples forward which always has a tragic end - her little arms are too short to catch her fall and instead her forehead catches it! She's had a few bruises smack in the middle of her forehead lately! 

A few posts ago, I talked about Maddy's ears and feet. I have updates in both of these areas that I wanted to share. With regard to her feet, I had a long appointment with the prosthetic and orthotic dude (are those guys "doctors", or just "glorified shoemakers" or what???) in which we talked about Maddy's current AFOs and the Dennis Brown walking shoes that were recommended. We tried the new Dennis Brown shoes but the rigid leather put so much pressure on the side of Maddy's leg in order to correct the turning of the ankle that it would definitely have left bruises or blisters. Her current AFOs are the best that they can do for her at the moment. I guess that means I'll save on shoe costs at least, as she can't wear shoes with them at all. Not very "cute" but oh well, mobility is more important than cuteness right? 

With regard to Maddy's ears, the private ENT forwarded his recommendation to the cleft team that the grommit insertion is "best performed soon and preferably under the same setting as cleft repair". Today I had a call from the team bringing our appointment forward two weeks to this Friday. I am hoping that it's a sign that they will want to perform the surgery soon. We will be out of Hong Kong from Dec 16 - January 4 (going home for Christmas - woohoo! First time in three years!), so realistically, I know we probably won't be able to fit it in before we go. I really want this surgery to be over with - but not bad enough to risk our vacation.

I got an email this week from Maddy's NICU neighbour - he is back in Hong Kong (he is actually American but was born here early while his parents were visiting family) and they are having a playdate next week. I can't wait to see him, last time I saw him, he was so tiny and frail - I'm sure he's way outgrown Maddy by now. I can't believe we're counting down, in two weeks today it will be one year since we brought Maddy home...

Thursday, November 17, 2011

Inclusive Education

This past year, I have been studying for my education degree. I decided to do a "summer session" subject (my university is an Australian university, and "summer session" runs from November to March). The only option that I had this semester was "inclusive teaching and learning".

As a part of my course, I need to learn about the legislation and social contexts of inclusive education (ie, education for students with special needs), different perspectives on the whole issue, etc. As a part of my first assignment (due on December 23, seriously!!), I need to discuss inclusive practices in an educational setting that I am familiar with.

Since I haven't been in school for 12 years, I haven't started any of my prac teaching yet, and the girls are not yet in primary school, I have decided to kill two birds with one stone and look into appropriate primary schools for Maddy. 

English speaking schools in Hong Kong are very difficult to get into and applications need to be made 1-2 years in advance, so although it may seem premature, Lana will need to start applying for primary school soon. Since I would like the girls to go to the same school, Maddy's needs play a major role in the school that I will choose for Lana. 

The whole process has been rather draining - I have been emailing some schools which I was considering, and I have a couple of appointments to go and discuss with them further. 

Maddy's "special needs" would be some kind of mixture of the following:
  • wheelchair accessible (Maddy may or may not need a chair, or she may have a walker or electric scooter, even just part time. It's hard to know exactly how mobile she will be, but accessibility is a major concern)
  • extra help with toileting if needed (Maddy will be unable to wipe her bottom without some form of aid, making toilet training more difficult. Hopefully she is completely trained by the time she starts school, but some extra help would be good.)
  • stools etc for reach
  • extra attention/help with learning to write/use scissors etc (due to the shape and stiffness of Maddy's hands)
  • flexibility if Maddy needs time off for surgery, ability to continue schooling from hospital etc
  • anti-bullying policies to ensure that she isn't an easy target
On one hand, I am glad that I am learning about these issues now, but it is a lot to think about and it is so far in advance. But such is the nature of education in Hong Kong. Hopefully we will be able to find at least two or three schools that we feel comfortable with sending the girls to...

Thursday, November 3, 2011

Ears and Feet


A bit over a month ago, Maddy got new AFOs. She needs AFOs as her ankle joint is very unstable. When she stands, she stands on her ankle - and in the long term, she could do damage to her feet.

The AFOs that she has are not designed for walking. They are designed for infants, to immobilise a joint. The AFOs that are designed for walking at lighter, thinner and can fit inside a shoe.

A couple of weeks ago, we met with the orthopedic surgeon to discuss how the AFOs were working for Maddy. My main concerns were that they are quite heavy and they tend to slip off very easily. The problem is, though, that Maddy's legs are so short and fat that there is no "ideal" AFO for her. We are, however, going to try what is called a "Dennis Brown Walking Shoe". These are little leather boots which go over the ankle and are very supportive for little feet. We will go and have some fitted next week, and hopefully they will work better for Maddy :)


One of my current main concerns with Maddy is her hearing. I know that with cleft palate, and also with DD in general, hearing loss is not uncommon. Maddy has DD with a cleft and as such is more at risk for hearing loss. An article about DD that I read suggests getting hearing tests every six months or so during the first few years (from memory). I have been asking the doctors at the public hospital to test Maddy's hearing, and about 4-5 months ago, Maddy was apparently placed on the waiting list for a hearing test. After chasing them down, I learned that the machine was broken, but should be fixed soon. As I had a pediatric appointment coming up, I decided to wait and talk about it with them then.

Now, I know that Maddy can hear at least a bit - she does respond to noises (although sometimes she seems as though she may not hear, but I can't tell if she's just ignoring). She also responds to certain things that we say. BUT - she is now 15 months old and cannot say a single meaningful word, with the debatable exception of "mamamama" which she says when she is cranky. She also doesn't say a wide range of consonants, and hearing is so important to speech development at this age.

At Maddy's pediatric appointment, the doctor told me that it is not abnormal for the wait to be so long, and I shouldn't expect an appointment in the near future. The only way I could get a sooner appointment was to go to the private sector.

So, armed with the referral, I called a private ENT on Tuesday afternoon. He asked if I could come in the following day!! After all those months of waiting, I could get an appointment within 24 hours of calling a private doctor!!

Now, Maddy is at risk for hearing loss due to two different things - a) fluid in the middle ear due to cleft palate, and b) problems in the inner ear due to DD. The ENT first checked for fluid in the middle ear, and sure enough she does have fluid which could be causing some hearing loss. He would recommend that she has tubes put in her ear ASAP. He cannot accurately assess the inner ear until the tubes are placed and the fluid is drained. After this is done, she will need to have a special hearing test called an "ABR" which is performed under sedation and could indicate whether or not there is a need for hearing aids.

The complication, however, is that we cannot just rush Maddy into surgery. First of all, the private hospitals will not take her as it is necessary that there is an ICU just in case there are complications with the surgery. Secondly, they need a senior anesthetist for Maddy as she is difficult and even dangerous to intubate. So the ear tubes, logistically, cannot be placed until during Maddy's cleft-palate surgery. Last I heard, the doctors were planning to do this between 18-24 months of age, so still 3-9 months away.

The private ENT will be sending the public hospital his recommendation to do the surgery "as soon as it is safe to anesthetise her". Our next cleft appointment is a month away, and I will be urging them to consider surgery in the new year (I would ask for earlier, but we've already booked tickets back to Australia for Christmas!!). She will not grow significantly in a few months, so hopefully they will decide that it is "safe"...

We won't have any firm answers on Maddy's hearing until after the surgery is done!! "Wait and see" is the story of our life with Maddy these days ;)

Saturday, October 29, 2011

"What's wrong with her?"

Yesterday, I took the girls down to the park. The weather is perfect for it these days, it's starting to cool down but not too cold yet. The girls love it - Lana loves running around and really doesn't need much supervision these days, and Maddy loves to scoot around on her bottom - I'm sure she's going to wear a hole in the bottom of her clothes!! And her AFOs are getting quite disgusting, even though they are only a month old. 

Lots of kids from our apartment complex spend their afternoons there, and they all get to know each other by name and play together. There is one little boy who is Maddy's age (and twice her size) - and he has a big brother who is six. 
Yesterday, Maddy was playing with her little friend when I heard the brother asking his caregiver:

"What's wrong with her? What happened to her arms? Why are they so small?" 

I have to admit, it stung a bit. It's the first time that I've heard anyone asking these questions out loud. I know there was no malice, only a child-like curiosity, but I still don't know exactly what to do in these circumstances. I also know that we will have many of these kinds of questions and we need to learn how to answer them.

In this case, I figured that the questions were not aimed at me so I didn't say anything at all. I know that we will see these kids over and over throughout the winter when we go to the park instead of the swimming pool - so maybe I should satisfy his curiosity with an age-appropriate honest answer, much like I gave Lana when she made similar observations? But on the other hand, I don't feel like we necessarily owe everyone an explanation either, particularly if they aren't even asking us in the first place.

It's so hard to know the appropriate response... I'd love to know your thoughts, so please comment with your opinions :)

Friday, October 28, 2011

A few videos

I haven't shared any videos for a while, so here are four for your enjoyment :) (if you're a facebook friend, you may have seen one or two of them before)

1. We went to Phuket, Thailand four weeks ago. At the airport, Maddy had a great time rearranging the furniture in the kids play area.

2. The airport play area also had this xylophone thing that Maddy loved :)

3. I'm trying to get Maddy ready for self feeding - she can feed herself by hand pretty well, but using a bowl and spoon is pretty tricky for her at the moment. After I feed her, I usually give her the spoon and bowl to play with so that she can get used to it a bit more :)

4. Maddy is getting better and better at standing unaided!! She can now stand for probably around a minute. The AFOs really help her to stand much longer - without them, she can only stand for a couple of seconds. I'm so proud of her!!

Monday, October 24, 2011

Meet Jadon and Kalina

When I was pregnant with Maddy, and particularly in her first few months, I talked to so many other parents of kids with DD. When Maddy was born and had some trouble with her airways, someone introduced me to Ember. She has two gorgeous kids, Jadon and Kalina, who both have DD the same as Maddy, and they both had airway issues at birth as well (although actually Jadon and Kalina's were more severe than Maddy, requiring them to have a tracheotomy (breathing tube) placed). 

Ember has just started a blog about her kids - Jadon is currently in the hospital preparing to have spinal surgery. I've loved reading about their adventures and seeing more of her gorgeous kiddos. 

You should go check them out and offer some support too!!

Sticks and Stones

Almost everyone has heard the phrase "sticks and stones may break my bones, but words will never hurt me"  - and almost everyone knows that it is a complete lie. Words can make wounds that take far longer to heal than the physical. 

For every difference, there is particular terminology that is considered "politically correct". There are phrases which society deems "appropriate" and other phrases that are less appropriate. Some of these phrases, it seems as though everyone is aware of (very few people use the "n" word for African American these days without knowing how offensive it is), others are moderately well known (most people would not call a child with Down syndrome "retarded", but many people still freely use the word "retard" and "retarded" to mean foolish, not realising that doing so is just as offensive), and there are some which are even less well known than this. 

The term "midget" is offensive to many people with dwarfism - many "LPs" (little people) and "POLPs" (parents of little people) get VERY upset when they hear this word used, even if it's in the context of a child sports league. Yet it seems as though very few people outside of the "dwarfism circle" are aware of this. I only learned that the word was offensive through contact with other people with dwarfism, and it wasn't until Bernard mentioned to me that he when I was pregnant with Maddy that he wasn't sure how to explain that Maddy had dwarfism to his colleague and he told me that he'd said "She'll be a midget" that I told him that the word was offensive.

Because I know that the word is offensive, I do not use it personally - (and neither does Bernard). But  in spite of this, I am very aware that very few people in society are aware that the term is offensive - so I try not to be offended by people using the word. If someone asked me "Is your daughter a midget?", I would reply "She has dwarfism - that is the preferred term", without being offended at their innocent usage of a word they were unaware could offend. However if we were walking and people started yelling out "MIDGET!!" at Maddy, I'd be very offended! I would be just as offended if they were yelling "DWARF!!" though, since it is the manner in which it is said which is most offensive. 

Sometimes I see people who seem to be always so offended by others, and I don't think that being so sensitive would be doing any favours at all to Maddy. Maddy is going to attract attention wherever she goes. She is going to have stares, questions, comments... some ignorant, some unwelcomed, some hurtful - and she will need to learn to deal with them. I remember reading Matt Roloff's biography and in it, he came home crying from school because some kids had called him "short", of all things. His dad responded something along the lines of, "But honestly, Matt - you ARE short. It's just a fact".

When it comes to the term "midget", when I hear it used, I do mention "are you aware that the term "midget" is considered offensive?" At the same time, I ask myself "was the word used in an offensive way?". If the answer is "no", I try not to get offended by it because I don't want to teach Maddy to be offended at things that people say innocently or in ignorance. (It's funny though, because one of the "preferred terms" for dwarfism is "Little People" - which I personally find very condescending, particularly when used for adults. I personally prefer using the terms "dwarfism" or "short statured".)

So I guess what I'm asking my friends, relatives and other readers - please be aware that the term "midget" is offensive to many people with dwarfism. And I'm not asking a one-sided thing here - I will try not to be offended by anything said or asked in ignorance, and I will try to teach my children the same.

Friday, October 21, 2011

Two false assumptions

As part of Dwarfism Awareness Month, I wanted to post one more "awareness post" - two things I would love for the world to understand about dwarfism (and disabilities in general).

1. Just because someone is small doesn't make them "immature"
Maddy may be the size of a (very plump) 3 month old - but she's NOT 3 months old, she's 14 months old. To treat her based on her SIZE rather than her AGE is not appropriate. A child with dwarfism might be 12 years old, but he may be the size of an average 5 year old. There is a huge difference in maturity between those two ages - and no 12 year old wants to be treated "like a baby". That is just as true, maybe even more so, for a child with dwarfism. 

2. Just because someone has a physical disability doesn't mean they must be affected cognitively as well
This one doesn't just go for people with dwarfism, but also people in a wheelchair, people who are blind, or deaf... even people who have no control of their bodies at all. Very often, these people are not cognitively affected at all and understand everything that is going on around them. They notice stares, they notice people talking about them, they see the mothers "shushing" their children. It is also insulting to talk slower or louder to people with a disability based on a false assumption that they are intellectually affected. And people with dwarfism are very rarely affected cognitively, meaning that their minds are as fast and as sharp as your own ;)

Sometimes I know that people are unsure of how to talk to people with a disability - even I am not so confident all the time. But the best thing is to ignore their physical differences and talk with them just as you would anyone else. Chances are you may have more in common with them than your differences.

Monday, October 17, 2011

Teaching our kids about dwarfism

The other day, a friend visited with her three month old baby. A gorgeous boy with these long arms and legs  I've forgotten how to hold a baby without dwarfism, all those long limbs sticking out at awkward angles. And to me, they look so "different" - it's funny how now, a baby with dwarfism is "normal" to me and a baby without dwarfism is the "different" one. 

I never knew, until the other day, that the same is true for Lana. 

"Mummy, why does baby S have BIG arms??? Maddy has little arms and baby S has BIG arms"

I honestly didn't know what to say at first - I was dumbfounded that she actually noticed and asked. I was amused that she too thought that baby S was "different" for having "big arms". 

I didn't expect to be answering these kinds of questions so soon... 

Later, after I had a while to think about it, I decided that I should be upfront about these questions and use this opportunity to start to teach Lana about dwarfism. Not too much - just a little bite-sized nearly-three-year-old answer...

"Lana, you know how baby S has big arms and Maddy has small arms? It is because Maddy has dwarfism. That means that her bones grow very slowly compared to you, baby S and most other people. Maddy's arms and legs are very small, and Maddy will always be much smaller than you."

I know maybe there's a better way of answering those questions, and probably a lot of it didn't really sink in yet. I know that there will be many, many questions over the next few years (and decades, even) and my approach will be the same - be upfront and honest with them, giving them the appropriate amount of information to answer their questions without overwhelming them.

And that's how I'm trying to teach my kids about dwarfism.

Monday, October 10, 2011

Dwarfism Awareness Month

The LPA (little people of America) has declared October to be "dwarfism awareness month". Last year, I posted a bunch of facts about dwarfism in this post here. I'm not going to post a bunch of facts again (they'd probably just be the same as last year anyway) but I wanted to share a little video with you all.


Thursday, September 29, 2011

And we're off!

We're currently at the airport ready to board a plane to Phuket, Thailand. We're looking forward to a much deserved break with my family. We'll get to see my brother for the first time in 18 months!

Please pray that we have a safe flight - we'll be flying over a typhoon!

I should have lots of exciting updates when we get back!

Wednesday, September 28, 2011

New Shoes for Maddy

Today we went to the hospital to pick up Maddy's new orthotics, and let me tell you, she is NOT impressed!! I expected as much - they restrict her movement at the ankle so it is much harder for her to move around. She can still stand with them on but it's a bit more awkward for her. I don't think that she can go from laying to sitting with them on though - she needs more ankle movement for that.

It will be hard for Maddy to adjust to her new AFOs, but I'm determined that she will learn to use them as needed - the pain and frustration of learning to wear them is worth her long-term mobility... We have a follow up appointment with the orthopedic doctor in four weeks so we'll see how it goes!!

Tuesday, September 27, 2011

Two months in Medicine (again)

These days, Maddy's appointments are fewer and farther between, so I've been updating the medical stuff less frequently. My last medical post was two months ago. Since then, we've had a few appointments, the most important (orthopedic) being today.

At Maddy's orthopedic appointment today, she had a full set of x-rays taken for the first time since she was born (she's had a couple of x-rays taken since then, but today, and also when she was first born, they pretty much x-rayed her entire body). I had a few main concerns for the doctor. They were a) cervical spine (neck), b) scoliosis (curvature of the spine), c) hips and d) feet.
Possibly the most serious concern for people with DD is kyphosis of the cervical spine. A kyphosis is when the neck is pretty much bent the wrong way. This can put pressure on the spinal cord and in worst case scenarios can even damage the spinal cord. If a child has a severe kyphosis, they may need spinal fusion which is a nasty, intense operation (but better than risking damage to the spinal cord!!). At the moment, Maddy's neck shows no kyphosis - thank God! Kyphosis is often evident already by Maddy's age, but as far as I understand, it can develop in the first few years. But for now, I'm thankful that things look good there.

Scoliosis is also common for people with DD - but Maddy's spine is pretty straight. It does, however, have a "kink" (I wish I could remember the technical name) in the thoracic region near the ribcage which we will need to keep a close eye on in the future. The doctor said that it is not cause for great concern as many people have these kinds of issues and are asymptomatic.

Maddy's hips are the joint that is of greatest concern to our orthopedic doctor. They are well situated, but the joints are very shallow and could be easily dislocated (actually, when Maddy was born, her hips were partially dislocated hence the need for the pavlik harness) and the doctor wants to keep a close eye on them as well. He has scheduled Maddy for another MRI when she is 18 months old. I asked the doctor which issue he thought was most likely to necessitate orthopedic surgery, and he said it was the hips. 

I personally had been more concerned about Maddy's feet - when she stands and walks, she does so on the inside of her foot, walking partly on her ankles. This could progressively worsen and affect her long term mobility so the doctor has ordered Maddy some ankle-foot orthotics (AFOs) for when she is standing. Maddy has a great deal of flexibility in her feet, so the AFO is not so much to stretch ligaments (some kids with DD need AFOs for that purpose) - rather it is to correctly align the ankle so she is standing on her foot rather than the side of her foot. They were custom-made for her today and we will pick them up tomorrow morning. 

In other "medical news", at our last cleft appointment, the doctors decided to wait for at least another 3 months before thinking of surgery. They plan to do the surgery between the ages of 18-24 months (that would be between February-August next year). Our next appointment will be in December, and I guess we'll hear then whether they will start to schedule it or whether they will wait a while longer.

We had the immunology appointment to discuss Maddy's apparent dairy/goat milk allergy with the immunologist, and he agreed that it is fairly apparent that she is allergic. We will be doing a skin-prick test to confirm but he said it's really just a formality, and I should plan on not introducing dairy until she's 3-4 years old!! We'll see how that goes... I may just give her small amounts every now and then just to see if she can tolerate it (she is not anaphalactic or anything, she just sneezes and gets mucousy). 

I've been waiting for the ENT to get back to us about Maddy's hearing test - I am slightly concerned about her hearing... she is not very vocal and there does seem to be times when she doesn't hear me (although maybe she is just ignoring me ;) ). Today I asked the orthopedic doctor whether he could access Maddy's records and tell me what was going on. It still has not been scheduled, so he called the ENT right there and then. Apparently the machine is broken at the moment so they haven't been scheduling any appointments, but at least I know it's not been forgotten!!

Anyway - that's about all that's been happening around here. We don't have anything major coming up on the medical-horizon so it may be more than two months before my next medical update, but stay tuned :)

Monday, September 26, 2011

Looking back - advice from another special needs mum

A couple of times now, I've met up with a group here in Hong Kong called "Special Needs Network". Basically, it's a group of mums who have kids with special needs. When I go, sometimes I feel blessed that Maddy "only" has dwarfism. Some of their kids have much "worse" disabilities and will dependent their entire life. I've felt a bit out of place at times, but these mums have some great resources regarding mainstream schooling, medical services, therapies etc and I know that they have some answers to questions that I have, or that I may have in the future.

The last meeting was the evening after I wrote my post about "remembering NICU" and I was talking with one of the mums there about it all. This mum has four kids - she had two healthy kids, then in her delivery with her twins, her son suffered a brain injury during the delivery and ended up with cerebral palsy. He is now six and although he is cognitive (ie, he can think, hear, see, everything like that), he is basically unable to control his body. He cannot speak, except for with the use of a computer he controls with his eyes, he cannot walk... 

Anyway - this mum said to me, "When you're in the moment (ie, when Maddy was in NICU), you just have to survive - you don't think about how you're coping, you just do. People tell you that they're amazed how you manage it all, but the truth is, you don't have any alternative. In some ways, looking back on that time after it's all over is even more traumatic than it was going through it, since you're not running on that adrenalin any more". 

I don't know if it's universally true or not, but I can identify with that...

(if you're in Hong Kong and want to join the Special Needs Network, please leave a comment below and I can have you added to the mailing list...)

Thursday, September 22, 2011

Remembering NICU...

These days, I've been thinking a lot about NICU. About "this time last year". Looking back on it now, I don't know how I managed to hold it together for those four months of backing and forthing, splitting my time between my two girls who were only together once (which was exactly a year and three days ago). Pumping like crazy, even waking up in the middle of the night to pump. Trying to maintain some kind of normalcy for Lana, still having some playdates and trying to see some friends from time to time. Lana started school in that time, one of Bernard's best friends got married, Lana turned 2, all while Maddy was in NICU. It was a crazy time...

For a long time after Maddy left the hospital, I was still so anxious. I would notice particularly when we were heading up to the hospital, the long, windy road at the end, I would be physically tense.When I look at photos of that time, it all comes back. All the frustrations and heartaches... It's not as bad as it used to be, but at times it still knocks the breath out of me.

Looking back on that time still upsets me a bit - I still firmly believe that she could have (and should have) been home so much earlier. I understand where the doctors were coming from, and I appreciate that IF anything went wrong, they could have helped her... but really, it shouldn't have been four months... That last scan that they did, the one that allowed her to come home, could have been done when she was much younger.

I remember reading something about parents who have had children with difficult medical issues and years later they display symptoms of post traumatic stress disorder. I can understand how that is possible. I don't think that I have PTSD but I still have so many negative emotions about those four months. And although we had four months in NICU, Maddy was healthy the entire time.

One of my biggest fears of having another child is having to go through NICU all over again. I worry more about that than I do about whether or not he or she would have DD (there's a 25% chance that any future child will have DD). I know that's irrational, but that's where I'm at. I even asked Maddy's doctors "If we had another baby with DD and her symptoms were virtually the same as Maddy's, what would you do differently the 2nd time around?" and he said "Virtually nothing". It doesn't instill a whole lot of confidence if they learned absolutely nothing from Maddy...

Anyway... I know this is quite different from all the uplifting posts I've been writing lately of Maddy cruising and dancing and being adorable - but just wanted to share my thoughts...

Monday, September 5, 2011


Just a quick one - check out Miss Maddy's latest new skill!!

She can now stand unaided for a few seconds, and it's getting longer and longer every day :) Maddy continues to amaze me - with all her medical issues, she actually is not technically "delayed" at all!

Go Maddy!!

Thursday, August 25, 2011

Australian Recap 5 - Sydney Aquarium and CBD

Before we went to Australia, Bernard and I wrote this massive list of things that we wanted to do back in Australia. Of course we left it at home, and in actual fact we didn't feel like spending every day in Australia out "doing stuff", but one of the things we really wanted to do was to go to the city and go to Sydney Aquarium

Bernard and I have a photo in this same spot from when we were dating so I wanted to get a shot with the kids. 

Lana really LOVED the aquarium - she could have spent all day there. Maddy on the other hand slept through the whole thing. Good thing she was free ;)

The aquarium was filled with these huge Lego statues, all kinds of things - they were almost more fascinating than some of the fish were!

After a few hours in the aquarium, it was time to catch a ferry back to the CBD. I love the ferries in Sydney, such a great view of the harbour! And what a beautiful harbour it is! Unfortunately, we were there on a really cold, overcast and windy day - but even though we were near freezing, we HAD to sit outside!!

When we landed, we had a bit of a walk around the harbour and took a few more photos...

...and then after some yummy pancakes from the famous Pancakes on the Rocks (open 24hrs, 7 days a week), we went home, very tired after a long day in the city :)

Sunday, August 21, 2011

Australian Recap 4 - Sydney, Great Nan and the "Beach Park"

After about a week in the Illawarra with my family, it was time to head up to Sydney to spend some time with Bernard's mum.

After a few days at Bernard's mum's house (in which time we took no photos, except for a few of the girls playing together on the floor), we went up the coast a bit further to visit my grandmother, whom all the kids call "Great Nan" (and she is indeed a great Nan :) ) 

This was the first time for Nan to meet little miss Maddy, and since Nan loves a good family photo to hang on her wall (yes Nan, I remember I promised to send you a photo of us - I must get onto that! Sorry!!), she had us all pose on her little veranda. 

Lana took a liking to Nan's dog Cindy...

...and apparently, Cindy took a liking to Lana too :)

We only had one day with Nan at this point of our trip, later in the trip she came down and stayed with my parents for a few days so we got to see more of her then :)


When we were in Sydney, we were driving to church one Sunday and I noticed this fabulous park on the way there. So on the way home, we got some drive through (KFC is SO much better in Australia than it is in Hong Kong!) and went and had our own little picnic. 

The play area was covered with sand and the kids all played barefoot in it. I believe it was Maddy's first time ever in the sand. She seemed to really like it :)

Lana was not so sure at first, but she came around :)

(Gotta love that beautiful blue sky! That's something we don't get much of here in Hong Kong!!)

Monday, August 15, 2011

Australian Recap 3 - Symbio

In between Sydney and Wollongong in a sleepy town called Helensburg is a little wildlife park called Symbio. It has been there for years and years - when I was a kid, my parents took me many many times. I got to touch some of the animals, and even milk a cow! It's not a huge zoo, but it's great for little kids, if you want a more "cozy" and "intimate" zoo, or if you just have a few hours rather than a whole day.

What would a trip to an Australian zoo be without an obligatory Koala photo? Unfortunately we JUST missed the time for patting them so we had to let them rest and look at them from behind a fence. Oh well, there's always next time :)

Maddy needed a little feed...

...while Lana was off for a walk with Nanny and Granddad.
Almost ALL Australian zoos will have a kangaroo walk-through area where you can feed them and pat them. This little mother had a baby in her pouch and was the focus of all our attention :) Lana LOVED the kangaroos. Maddy didn't really care either way ;)

Saturday, August 13, 2011

Walking :)

Maddy's been cruising for a little while now - if you missed it, I posted a little video on her birthday post.

She will walk forward a little holding onto our hands - but all baby walkers are much too tall for her to use.

Today, we were at a birthday party (Happy Birthday Kayla!!) and Maddy found these little chairs were perfect for pushing around. I think now I need to go buy one for her to use as a makeshift walker ;) 

Monday, August 8, 2011

Australian Recap 2 - Kiama and Sunset

I have to say that beautiful Kiama on the South Coast of NSW is one of my favourite places to visit when I'm in Australia. Cute little cafes (with REAL Aussie iced chocolates. The kind with lots of icecream, chocolate syrup and fresh cream on the top!), little specialty stores selling souvenirs, toys and all kinds of arts and crafts, some pretty awesome icecream, a great park with lots of grass for the little ones, and who can forget that stunning coastline and blowhole? We went down to Kiama with my dad one afternoon and we had a great time (ANY time involving iced chocolates is a great time for me, and my trip back to Australia involved MANY of them ;) )

We started, naturally, at a nice little cafe...

 Sitting on the table since another baby was taking the cafe's only highchair! (shock, horror)

 Want some sugar, Mum?

Hmmm, I think I LIKE this stuff ;)

Then after our tummies were full of yummy goodness, we went for a short little walk to burn off some of those calories.

 Stopping to read all the signs

Cozy warm :)

Later that evening, we were at my parents' place about to have dinner and God decided to put on a show for us. One of my absolute favourite things about my parents' place is the view - it's a gorgeous view across a lake, with mountains off in the distance. And when the sun sets... WOW! 

Of course we HAD to get some pics with that view...

 Daddy and his girls

Nanny and the girls

What more can I say? Beautiful... Wish we had more of THAT in Hong Kong...

Saturday, August 6, 2011

Growing up

These days, Maddy seems to be growing up more and more every day. She's getting stronger, more active, her fine motor skills are getting better...

Some of her latest things to do are:

1. scooting ALL over the house! She will follow us into every room. She especially likes to go around closing all the doors. Could it be a coincidence that Lana also likes to close all the doors? That brings us to:

2. copying ANYTHING that Lana is doing. Big sister is dancing? Maddy wants to dance too. Big sister is clapping? Maddy will clap. Big sister is reading books? She wants to get right in on the action.

3. standing up on anything and everything. Just now, she stood up against a wall! She loves to be standing and it's so cute to watch her stand! 

4. cruising a little. She can only really do this if the height is just right - but I know that it's only a matter of probably a couple of weeks before she gets even better at it! 

5. giving. She will actually share her things with me now, actively giving me a toy, or trying to shove her biscuit into my mouth.

6. nodding/shaking head/waving "hi" and "bye"/signing "more". Maddy has been doing many of these things for months now, but it is more and more obvious that she understands what we are saying or what is going on and responds with the appropriate "sign". If I am getting my bag and shoes, she will start waving to me, completely unprompted. If we are talking and one of us says "no", she will shake her head. She loves to listen and be involved in our conversations. Even though she is not saying any clear words yet, she definitely understands what is going on :)

I'm sure there is many more that I can't think of right now, but I just wanted to share those new things with you all :)

Thursday, August 4, 2011

Happy Birthday Maddy!!

To my darling girl,

Wow, one year already. When your big sister was born, I always said that there was nothing that changed my life more than having children. Becoming a mother is so much life-changing than going to university, than working, than getting married, than moving away from home, even than moving to a foreign country. I thought that becoming a mother for the second time would be a relatively small change, but boy was I wrong about that! You have changed our lives so much more than I ever imagined, just by being you. You have brought us so much joy, so much strength. You have brought so much growth in our lives. You have brought so many wonderful people into our lives that we would never have met if it weren't for you. You are touching so many people's lives. I am so thankful that God brought you into our family.

My pregnancy with you seemed like the longest pregnancy in the world - it was quite an epic journey for us, that pregnancy. And you were so cozy inside of me and didn't want to come out and meet the world. We were so ready for you to be here, ready to know that everything was going to be ok.

I remember so clearly when you were born. I was praying that you would let out a big yell and I would know that you were ok, but you didn't. You were so quiet. I was worried about at first, afraid that we were about to get bad news.

But then you whimpered a little. You still have one of the softest cries that I've ever heard - although you do know how to raise your voice if you really want to make a point. The doctors brought you over to me and told me that your APGAR scores were 9 and 10 - even better than your sisters. I knew then that everything was going to be ok.

I was itching to get up to the NICU and see you, but I had to finish an IV drip first. The nurse put the flow up too fast and I noticed that it was emptying about twice as quickly as they said it would - but I didn't tell them because I knew that meant I could go and see you sooner.

When I finally went to see you in the NICU, you looked so small in there - but oh so sweet! My arms were longing to pick you up and cuddle you, but it would be nearly two more weeks before I was allowed to do so. 

Even from very young, you were so alert and watched everything. You still do. You have intelligent eyes and even at birth, it was as though you understood every word that I was saying to you. 

It's crazy that in the last year, you have grown from this little baby:

into this cheeky little girl:

In the past year, you have had your hurdles to overcome, and you have soared over them all. I hope and pray that you will continue to do so as you grow. 

I love you baby girl!! 


PS - I love your slimy baby kisses that you just started giving me in the early hours of the morning on your first birthday...

Monday, August 1, 2011

Australian Recap 1 - The Plane, and Grass

I never posted hardly ANYTHING about our trip to Australia, besides a few specific events. We have tons of photos that I never shared so I thought I'd do a few little "recap" posts to share them all with you. I can't believe that it was nearly four months ago that we left to go back! And I rarely posted on my blog when we were there (I did 2 posts the entire nearly 6 weeks!). We were having too much fun to blog about it ;)

Anyway - as you all know, Maddy was absolutely fine on the plane. Lana was temperamental, I chucked up, but Maddy was completely fine ;) I think it must have been because she had the most comfortable seat in Economy Class! She could even lay down. And I have to say, this is a situation where dwarfism is a benefit - Maddy will be able to fit into these beds for a LONG time still. Lana outgrew them by the time she was about 10 months old ;)

When we arrived in Australia, we first had a couple of quiet days with my family. My mum had met Maddy once at the hospital when Maddy was only a week old, but had never held her. My dad and my sister had not met her at all before the trip. (My brother who lives in Denmark STILL has not met Maddy - he was last in Hong Kong when I was pregnant with her. He was actually stranded here for an extra two weeks due to that volcano, remember? - but we will see him at the end of next month - woohooo!)

On our 2nd day in Australia, we decided to take the girls down to a lovely, grassy park at the harbour - something SO different to what we do in Hong Kong. Hong Kong is concrete everywhere and we don't get much grass-time. 

We sat on this lovely blue mat that my parents scored for free and we had fish and chips (the first of many, I'm afraid!).

Then we decided to introduce Maddy to grass for the first time.

Not so bad...

Um, I think I'm changing my mind about it...

GET.... ME..... OFF!!!!

After that traumatic encounter, it was time for some cuddles with Nanny and Aunty Ash

Then Lana had a bit of a play in the park while Maddy had a bit of a snooze, and we were off - one of our first cultural experiences in Australia checked off our list :)

Saturday, July 30, 2011

One Year of Pumping

Next to questions about Maddy's medical condition, one of the most common questions that I get asked is about pumping. If you don't want to read all the details, feel free to stop reading right here as the rest of this post will be only about pumping and nothing else.

I have written previously about my pumping experience here. At the time, it was still early days (just shy of three months) but the early days are the hardest!!

To summarise from the earlier post, in the first month of pumping (some will say the first three months, but really it's until supply is established), it is important to pump at least eight times a day, at least five minutes after the breast is empty, and with no more than five hours between any two pumps.

For me, my supply was well established by a month, and at one month, I dropped down to seven pumps a day, but still keeping that one middle of the night pump. I was pumping 1400mL a day.

My supply continued to increase and so after another two weeks, I dropped down to six times a day, pumping 1500mL a day, which increased to about 1600mL a day by the time Maddy was two months old. 

At that time, I dropped down to five pumps a day, and kind of dropped the middle of the night pump at last! I was still pumping at 11pm and then 6:30am, usually dropping back off after pumping in the morning. That early morning feed got pushed later and later until it was at 8am and I was finally sleeping through the night again! Maddy was still in the hospital at that time. 

When Maddy was around three months old, I went down to pumping four times a day. I would pump around breakfast, lunch, dinner and right before bed. I was still getting around the 1600mL of milk a day all this time. 

When Maddy came home, the busyness of needing to look after her made me go to pumping three times a day. This was the first time that I noticed a drop in volume. I pumped three times a day for a LONG time, from the ages of around 4 months til 8 months old - and my supply slowly dropped from about 1500mL to 1200mL. This was still plenty to feed Maddy though. At her peak, she was only drinking 800mL a day, and when she started solids, this decreased substantially. 

At about eight months, just before our trip to Australia, I decided to go down to just twice a day - further reducing my supply. At the time, Maddy was only drinking about 600mL and my supply was around 7-800mL. Still more than enough, but with a much smaller excess. That said, I think I could have maintained pumping twice a day and met her needs at least for quite a few more months. 

My initial plan was to pump for a year and then to transition Maddy onto cows milk, bypassing formula altogether. However, Maddy's dairy allergy put a spanner in the works there! I wanted to make sure that we had a good milk alternative that Maddy would actually drink before I stopped pumping, and the thing that works best for her at the moment is soy. Maddy is also allergic to goats milk, so that is not an option for her. 

Knowing that we had a good alternative, I was confident to begin pumping just once a day. The transition from twice to once a day was the most difficult - instead of just dropping a pump, I had to reduce the time that I was pumping slowly in order to actively decrease my milk supply without having all kinds of engorgement issues! I managed to make a fairly painless transition by the time Maddy was around 11 months old. 

I was surprised with how quickly my supply dropped with just pumping once a day! Within a week, it had halved to a little under 400mL. Maddy drinks about 400mL a day, but so that she will be able to have breastmilk for longer, I have been giving her one bottle of soy milk and one bottle of breast milk a day, freezing the excess.

In anticipation of her first birthday, I was also been actively pumping less and less each day. Initially, I was pumping for about 40 minutes in order to pump til empty, but then I reduced right down to just 15 minutes, yielding only 150mL. And then, I planned to see what would happen if I skipped one night. I thought I would need to pump in the morning due to engorgement, but I wasn't uncomfortable - so I put it off until night time. I still wasn't uncomfortable, so I figured I might as well "hang up the horns", so they say. 

So I didn't QUITE make it to one year, but I have to say that all in all, I did a pretty awesome job (pat myself on the back). Pumping was not always easy, and I have had to make sacrifices to do it - but I do know that it has had health benefits for Maddy, and financial benefits for us!!

My advice to anyone wanting to pump would be - just try it and see how you go. For some people it is easier than for others. I didn't find it unbearable, although it is definitely a sacrifice. Also I think it is good to keep a track of when you pump, how many times a day you pump and the volume you get as well. It helps you to know where you are, and for me it was those numbers that helped me to decide whether to risk dropping a pump. For me, it probably made it easier in some ways that those early days, I didn't need to look after a newborn. By the time that Maddy came home from hospital at four months old, my supply was well and truly established and I was in a routine that I could work around.

I also found, I had gastro twice during that year and both times, my supply really took a HUGE hit. It was scary the first time it happened, within a day, my supply was down 40%. But when I recovered, so did my milk supply. The second time I had gastro and my supply also took a hard hit, I didn't fret so much because I knew that it would bounce back, and it did. 

So, there's my pumping "journey"... and now, for the first time in 3.5 years, I'm not either pregnant or breastfeeding (or both)! It's kind of weird, but good :) There is the odd tinge of guilt - I could have kept going for longer, and I know I COULD have... but I also know that at this age, the benefits for Maddy are smaller, and for me, it's no longer worth the hassle. I'm sure Maddy will thrive regardless :)

Thursday, July 28, 2011

One year ago...

A year ago today was my due date.

My mum was here in Hong Kong waiting for baby Maddy to come. 

I just went back and read some of my old posts to remember those days of waiting... going a week overdue,  being induced, hoping for Maddy to be healthy and that we wouldn't have any unpleasant surprises when she was born.

We had prepared ourselves for her to be different. I knew that she would be spending at least a day or two in the NICU and that I may be leaving the hospital before her. I had no idea whatsoever that she may be there for four months though!

In this whole journey, for me, the pregnancy was probably the most difficult time. Not knowing how Maddy would be, not knowing exactly what condition she had, in the earlier days, not even knowing if she would make it home. For me, the pregnancy was even harder than NICU. Well, it was different. NICU was incredibly frustrating, but at least Maddy was incredibly healthy. The healthiest baby there, I think. Apart from that first week, I never worried about whether we would bring her home. I only wondered how long it would take!! 

I had forgotten how sick we were this time last year. This time last year, Bernard had shingles. In Maddy's first couple of months, he also had hand foot and mouth disease.

There's still a week til Maddy's first birthday. We're not doing anything big to celebrate - we're just taking the girls to Disneyland. It's probably more for Lana than for Maddy - but it will be nice to spend the day together. We'll make sure that there is cake and candles somewhere in there. And I'm sure that I'll be doing a whole lot of remembering...

Friday, July 22, 2011

Why I don't pray for a miracle

First of all, I have to say that as a Christian, I believe in the supernatural. I believe in miracles. I believe that healings still happen today. However, I do not pray for Maddy to be "healed" of her dwarfism. Not because I do not have faith, but because I completely believe with all my heart that God made her different for a reason, and to change that one aspect of her would be to change who God made her to be. 

There are people in our lives who seem to be fixated upon the fact that Maddy is a dwarf and they continue to "pray for a miracle" for her. This really bothers me because these people are missing a very important biblical truth. I wrote part of my thoughts on this topic over a year ago in this post - "My thoughts on God and suffering" (have a read, if you haven't already. It's one of my favourites). Simply put though, they are missing the fact that sometimes God allows something that looks like weakness to the world in order to show His strength. In my pregnancy, I felt a lot like Paul did, when he prayed and prayed for God to remove his "thorn in the flesh". God's answer to him, as it was to me, was "No - my grace is enough for you". And so Paul learned to accept and boast about his weaknesses instead of continuing to pray for God to change the situation.

In order for God to "heal" Maddy, he would need to change her DNA completely. He would need to go into every cell in her body and take out the affected DNA and replace it with different DNA. DNA that was not Maddy. There is absolutely no difference in me praying for God to heal Maddy's dwarfism as there would be if I prayed for God to change my Chinese husband and make him Caucasian. Or if I prayed for him to turn my uncle into an aunt. We can all see that features such as race or gender would fundamentally change who someone is - and it is the same with this one little gene that causes dwarfism. If God changed it, he would be fundamentally changing who Maddy is - and I don't want that. I love my daughter the way that God made her, and I wish that everyone else would too!

Today I came across a fantastic new blog called Noah's Dad. Noah's dad was writing about this same topic and echoed my thoughts so well - in fact, his post was what inspired me to write this. He says:

... sometimes when people say they are praying for our son they have this tone in their voice like they are praying for him to be “healed” of the swine flu, or the chicken pox. I jokingly (and I really do say this) say to them, “No!  Please don’t pray for our son to be ‘healed’ of Down syndrome. We really like our son, and would prefer to keep him!”
... If you were to “take away” Down syndrome you would take away our son.  He would have a completely different genetic code, thus being a completely different person.

So pray for him to behave, pray for him to come to know God through Christ, pray for him to develop into everything God has created him to be, pray for him to be loving, and kind, and pray for the small hole in his heart to close up before we go back to the doctor.

But please don’t pray for him to be “healed” of Down syndrome.

So in my own words, I want to ask you all - please continue to pray for Maddy. Pray that she will be the healthiest Diastrophic Dwarf in the world, that she will not have many of the common complications of her condition. Pray that when she has the surgery to close her palate, that she will respond well to the anesthesia. Pray that she will grow up to be loved and accepted by all, that she will develop a strong sense of identity. Pray that she will excel in everything that she does. Pray for her character. Pray that she will learn to accept that God made her differently and that she will allow Him to be made strong through her weaknesses. But please do not pray that that she will be made different than who she is. By doing so, you are praying against one of the very things that God intended to make her special.