Thursday, January 27, 2011

Holding onto... STUFF!

One of the milestones that is hardest for Maddy to reach is her grasp. Her fingers simply do not bend at all the joints, and the joints that she CAN bend them at are very stiff. She cannot make a fist (and never will be able to), she cannot even touch her fingers to her thumb (she will be able to do  this in time with lots of practice! We physically have to do stretches on her fingers to help her improve her range of motion). I watch her sometimes and she seems to get so frustrated that she can't pick stuff up like she wants to. She bats away at things though and reaches (obviously with her short arms, her reach is not very far - which is a blessing in disguise when I'm eating dinner with her on my lap!) - sometimes she manages to hook something onto her fingers and can pick it up briefly with one hand. 

Recently, she has been able to hold things a little better by pushing it between her two hands. It needs to be something the right length, and not too heavy, since she doesn't have a great grip on it. She has loved her new-found freedom and this rattle pictured below is the perfect size and shape for her :)

Sunday, January 23, 2011

A not-so-gentle reminder that I'm NOT Supermum

This week, it has been my turn to be the person most in need of medical attention! For weeks now, since Maddy has been at home, I've been trying to do all the childcare of both girls all the time. I have a helper (something that is very common in this culture) but I've always asked her JUST to do the housework and I'll look after the kids myself. When Maddy was in hospital, I had no choice but to have her look after Lana every afternoon while I went to the hospital, but when Maddy came home, I resolved to try do it all.

I've been trying to drop Lana off at school, pick her up from school and take Maddy to all of her appointments myself. Mothers everywhere else do that right? But then again, come to think about it, mothers in most other places would probably do that with a car and a double stroller rather than catching a tram or bus, walking to the bus stop, up and down stairs, across busy roads with the baby in a carrier and expecting a two year old to walk somewhat responsibly (she inevitably DOESN'T walk responsibly and usually needs to also be carried, or at the very least, dragged as well ;) ). 

So on Monday, I was leaving the doctors with Maddy and on my way to pick Lana up from school when it finally happened - I slipped a disc in my back! The pain was excrutiating, I could barely stand, let alone walk (with Maddy still in the carrier), but I managed to get to the school and drag Lana into a taxi before calling our helper and getting her to meet us downstairs. For the next couple of days, I couldn't even hold Maddy, so I HAD to ask others for help. I managed to get in some physio and thankfully, though I'm not quite 100% yet, I'm having a pretty fast recovery.

I'm taking this as a reminder that I MUST look after myself. A couple of weeks ago, I was telling Bernard that I should go back to physio because I could feel my back getting worse - but of course I never got around to booking that appointment until I hurt myself.

When I went to counselling a couple of months ago, one thing that I really got out of it was a reminder that I need to take time out of my busy life to look after myself so that I have the energy and strength to be the best mother I can be for my girls - and so now I'm going to make a point of doing that, particularly when it comes to my back!

So this week, I've been taking it easy. When I take Lana to school, I've been leaving Maddy at home with our helper - and I think it's actually better for Maddy as well, she's napping better during the day and also getting to sleep easier at night. So if there's anything for me to learn from this week is sometimes, in the words of the Fancl ads (I think it's a Hong Kong thing), "Less is More" ;)

In Maddy-news, we've had a quiet week - and next week is also quiet too with just physio and no other appointments until after Chinese New Year. She has a few new cool skills but I'm trying to get some photos so I can post them for you all in the next week or so ;) 

In regular family news, over the next few weeks, Bernard's taking a bit of time off and so we're going to do a few more "staycation" things to try and relax a little. I'm looking forward to it all, and hope to be updating about our adventures soon :)

Sunday, January 16, 2011

Maddy's friend Kai

One of the things that I have loved about the internet is being able to connect with many people around the world. I've especially loved meeting other people who also have Diastrophic Dysplasia like Maddy. I've mentioned Chris Errera many times, along with Matt Roloff. There are also other mums with little kids with DD too. One who has helped me a LOT throughout my pregnancy with Maddy and even to this day is Stacey from Grant us a Miracle.

I've been also following the blog of little Kai who is about two years old and SO adorable I just want to squeeze him! You have to go check out this post written by his mum Chelsea, and make sure you watch the video! Kai loves jumping on the sofa :)

That video just totally brightened my day when I saw it :) Hugs to Kai!!

Friday, January 14, 2011

Maddy's Cocoon

Maddy has this butterfly playmat and Lana often will bump it over. I took this series of photos of Lana wrapping Maddy up inside, and Maddy giving me this "Help Mum!" look and I've been wanting to share them. Hope you enjoy :)

This week in Doctors Visits

After yesterday's post about Maddy being overtired, we had a very busy afternoon today and I was sure that we would be in for a dramatic evening tonight. We left the house at 1:30 to take Lana to school, then I had to do some shopping (poor Lana had to borrow a friend's beanie because she didn't have her own and was freezing without one!), then we had planned to have a playdate and dinner with some of Lana's friends so we didn't end up getting back home until close to 9! And in the time we were out, Maddy didn't really nap for more than about thirty minutes or so. But when we got home, I put her straight into bed, turned out the lights, turned the white noise up high and sat next to her, not interacting with her, but just replacing her pacifier if she spat it out and was getting cranky. Within half an hour, she was solidly asleep and now I have time to write a bit of a blog about our week. I know my mum's been wondering, she was calling me every other day to ask about appointments ;) Maybe some of you others have been wondering too (or maybe not, maybe it's just my mum who checks this blog five times a day ;) ;) )

This week we had four appointments between Monday and Wednesday, it was all pretty intense! First off the bat was our ENT appointment on Monday morning. The good news is that Maddy's breathing is very stable. I asked the doctor about travelling and she said that most likely it would be fine to take Maddy in a plane already - but she advised waiting until we have our pediatrician appointment next month and asking him. They can't give us a 100% guarantee of course - but knowing that the ENT thinks that Maddy is strong enough is a great feeling. I can't wait to get back to Australia!!

The ENT appointment was at the hospital where Maddy was born and spent four months in the NICU so while we were up there, we decided to pop in and see some of our old friends up there. It was really nice to see them again - this time OUTSIDE the NICU doors. I know that they love and miss Maddy so it was good to catch up with them again :) 

On Monday afternoon, we had our first outpatient physio appointment. It really should have been sooner than now but it took a while to get the paperwork sorted out and then a while longer to get an appointment with Christmas/New Year right at that time. She was saying that Maddy's trunk strength is pretty good. Developmentally she is and will be delayed, but that is mostly due to the fact that her limbs can't help her as much as they help other babies. For example, when she is sitting, her arms can't reach the ground to support her, and if she starts to fall, her head will hit the ground before her arms did ;) Also when she is laying on her tummy, she needs to use pretty much only her trunk strength to keep her head off the floor. Even as an adult, try laying on your stomach without using your arms to help prop you up and you'll soon find out how hard that is!! So even though Maddy's not rolling and sitting yet like some other five month old babies are starting to do, considering her unique body, she's doing great development-wise!

Another interesting thing that the physio was talking about, she also treats a one year old boy with Achondroplasia dwarfism and she was saying it would be good for us to meet him as well. I guess she would need to check with his family that they would like to meet us as well - but I would LOVE to meet another "LP" family here in Hong Kong! I really hope that it works out that we can meet him :)

On Tuesday afternoon, we were admitted into the hospital to have a few assessments and x-rays done. I never like being admitted into the hospital because all the paperwork and "bureaucracy" of it all means the process takes a lot longer than it should! We got there at 2pm, and by the time we did a short OT appointment, a short PT appointment and three x-rays, it was already 6pm! Then we had to be back at the hospital at 8:30am the next morning!

On Wednesday, we made our way back to the hospital and ended up being half an hour late. At 10, we headed off to meet Dr Alman from Toronto who I was talking about last week - and we met him and were able to chat with him about Maddy for a while. It turned out that part of what they wanted to do was for him to "present" Maddy's case at a lecture for about 50 trainee orthopedic doctors - something that I didn't fully understand until we were there. I was happy for that to happen though because now that means there are 50 more orthopedic doctors in Hong Kong who are now more aware of Diastrophic Dysplasia, it's symptoms and how to manage the orthopedic issues related to it. 

The consultation with Dr Alman was brief and didn't really give me a whole lot more information than I already knew - but I know that the long term benefits for Maddy will be great. Our orthopedic doctors here in Hong Kong will continue to consult with him in the future. His opinions about what we should do are practically identical to those of Prof Sillence which is also reassuring. I'm always thankful for second (or third, or fourth...) opinions. 

So that's our very medically-busy week for you! Things will slow down after this week and the next few weeks shouldn't be so bad, maybe just one or two appointments a week, I think.

Coming up in a few weeks, Bernard will be taking some time off work and we have two short getaways planned! First, we will be going to Macau and staying at The Venetian for two nights, and then we will go to Hong Kong Disneyland Resort and stay overnight and spend two days (or probably half-days in reality) at Disneyland! I'm so excited for our little "holidays" :)

Thursday, January 13, 2011


The past few weeks, we've been pretty busy with doctors appointments and other fun things, and as a result, Maddy has been getting very overtired. She's been getting particularly cranky around 8pm but cannot get to sleep, even with a lot of assistance. On more than a couple of occasions, she's even screamed for up to an hour and a half inconsolably until we could finally manage to get her to sleep. It's been pretty rough on us both as she's pretty high maintenance at the moment!!

I know what the solution should be - it would be to get her into some kind of routine, be careful not to overstimulate her, and help her to learn how to self-settle a bit better, but putting it into practice around everything else that we need to do is pretty hard.

Often with our doctors appointments, we go and need to wait for an hour or sometimes even more before we see a doctor. During that time, Maddy might fall asleep only to be woken abruptly soon after. It's not uncommon if we have a morning appointment for us to need to wake her in the morning, give her a quick feed and then drag her out of the house right away. 

Most of the time during the day, she's fine. There's only been two times where I had this problem during the day. Last week at our orthopedic appointment, we had a two hour wait and Maddy pretty much missed her morning nap which is for her the most important nap of the day. She screamed in the waiting room for about half an hour before falling asleep five minutes before our name was called. 

The second time was yesterday when we were having the consultation with the orthopedic doctor from Toronto. We'd dragged poor Maddy from bed at 7am to take her up to the hospital, during which time she was woken by one of the various nurses or doctors every time she managed to fall asleep. By 10:30, she was completely past it but unable to settle. We spent most of the time with the doctor trying to yell to each other over her screams. Fun! 

Usually it hits the hardest around 8 or 9pm. She's showing definite signs of tiredness and even looks like she's about to drop off to sleep. Sometimes we manage to put her into bed and think that we've won for once - but she inevitably wakes up after five or ten minutes screaming. She will settle a bit when she's sitting on our knee but still shows signs of tiredness. Sometimes we repeat this cycle, sometimes we just let her sit up for a while in the hopes that next time we put her down it won't be so painful. Sometimes she will end up completely overtired and screaming after which it's a huge effort to get her to sleep, but once she is asleep she will sleep until morning. Other times she will stay awake until we go to bed and once we're beside her, she seems to fall asleep easier (although if I try to "trick" her by "pretending" to go to bed at 8 or 9 and then sneaking out when she seems like she is completely asleep, she ALWAYS will wake up a minute after I walk out). 

I never had to deal with these issues with Lana so I'm at a bit of a loss for new ideas that will help Maddy to get to sleep easier - I really don't want to spend hours and hours of my evenings just trying to put her to sleep. And due to the busyness of the past two weeks, it has been a daily battle. Hence the lack of blogs! 

On the bright side however, once Maddy is asleep, she sleeps fantastically. She often doesn't wake up until an hour or two after Lana and the rest of us!

I know that probably it will get better in time as we have less appointments or as Maddy grows more tolerant to being dragged from place to place - but in the mean time, if anyone has any suggestions or ideas on how to make things easier for all of us, I'd LOVE to hear them!

(this blog was brought to you in bits and pieces between putting Maddy down, picking her up again, holding her and typing at the same time, and finally in the end having sweet victory as she is down for the night now - fingers crossed! - so forgive me if it's a bit disjointed!)

Tuesday, January 4, 2011

First Outpatient Orthopedic Appointment

This morning, I woke up bright and early (ok, 8:30 - that's early for us here in Hong Kong!) to take Maddy to her first outpatient orthopedic appointment. We were going non-stop from the time I woke up until we got to the hospital a little after our scheduled 11am appointment. 

As soon as I walked into the waiting room, I could tell we were in for a long wait - it seemed like half of Hong Kong was there today! It took us two hours to see a doctor (gotta love the public health care system here! But honestly, we have no other alternative. Maddy really needs to be at a university hospital, not in someone's private clinic for her orthopedic issues.) During the wait, Maddy refused to sleep so she got overtired and the last half hour, she was just screaming because she was so tired. Typically, she finally fell asleep five minutes before we finally were called, only to be woken up (screaming some more) by the doctor when we got in there.

Overall, I was quite impressed with the doctor. I hadn't met him before, but he was on the multidisciplinary team when Maddy was in NICU so he was very familiar with her case. He obviously has no experience with Diastrophic Dysplasia because of how rare it is, but he has done his homework and is aware of what we need to look for with Maddy and how we should manage it. 

Today, he checked Maddy's hips to see how they are doing now that she is out of her Pavlik harness. It seems as though they are still good, not dislocated any more - however she will need to have an x-ray and an MRI to confirm that her hips are ok.

Next Tuesday, we need to go back to the hospital for another set of x-rays for Maddy. They will assess her hips and her spine. Then on Wednesday we need to go back again - there is a highly regarded orthopedic doctor from Toronto, Dr Benjamin Alman, who is in Hong Kong and they want to consult with him. From Dr Alman's bio, he doesn't seem to specialise in Skeletal Dysplasias, but he has written at least one research paper on the subject - and he seems to be very good at what he does, so it will be good to have his opinion on Maddy as well.

I asked the doctor today about Maddy's feet and whether he thinks she would benefit from AFOs. I know that Prof Sillence generally recommends against AFOs for DD kids - but they can sometimes be used in a way that prevents surgery on the feet - and if I had to choose between AFOs or surgery, AFOs seems like the lesser of two evils. He said that AFOs are a possibility, but he'd reassess later on. 

This week, we have one more appointment - on Thursday we have the developmental occupational therapy appointment. Then next week is when the fun really starts - we have four different appointments! On Monday, we have ENT and physio, then on Tuesday and Wednesday we have the two orthopedic appointments (Tuesday for x-rays and Wednesday for the Alman consultation). It's going to be a fun week!

Sunday, January 2, 2011

Top Twelve Posts of 2010

Happy New Year everyone! I was wanting to write this post a couple of days ago but we had the weekend away on a "staycation" (more about that later!). So instead, as my first post of 2011, I want to look back at the past year and reminisce about some of my old posts. 

I started this blog in February, and I must include my first post on my list of favourites. When I read it now, it seems so surreal - but I can clearly remember that fear that we would go through the pregnancy only to lose Maddy when she was born. I was determined even then to be able to have hope, even when we didn't know what the outcome would me - so much so that from way back then, we had already chosen Hope as Maddy's middle name.

2. My Thoughts on God and Suffering
As a Christian, it can be hard to get your head around the concept of if there is a God, why does he allow bad things to happen, particularly when they happen to good people or to people who are doing their best to live for Him. Here are some of my thoughts on the subject, when faced with suffering of our own. 

3. What it Means to be Loved
I take no credit for this post - it was just something I found online that spoke to me profoundly, and it still does. I can't listen to this song without crying.  "I wanna be her mom for as long as I can..."

The title says it all, really! It was so great to be able to relax a bit, and to know that we didn't need to start planning a funeral... Before this time, that was the hardest thing...

Maddy's here! And here's an email I stole from Bernard because he should be writing this blog instead of me - he's got such a way with words.

The NICU nurses bent the rules for us to allow six week old Maddy to meet her sister for the first time! This was the only time that Lana saw Maddy until Maddy came home from hospital at four months old, and was the biggest highlight of our time in NICU (the pictures are so cute too!)

I'm so glad that I found Chris online - not only has his story encouraged me so much, I know that many of my friends were also encouraged by him. I've seen quite a few of my friends post about him on Facebook, and I know that I'm not the only one who has bought his CD! If you haven't checked him out yet, you need to.

I really felt this post. Being in NICU for so long gave me a bit of a window into the suffering of other people, and it changed something in me. I'll never be able to think of premature babies in the same way again, now that I've seen them up close and personal.

I was thinking of the phrase "I just want a healthy baby" and how my perception of it has changed now that I have my beautiful Maddy who I wouldn't change for the world. 

I spent a lot of Maddy's hospital time being frustrated at the system and wanting her home as soon as possible. But there were benefits to her being in there and by focusing on those benefits, it helped me to accept that which I couldn't change.

I have so much to be thankful for :) Plus this post has cute pictures too!

What more can I say? The moment that I was waiting for the entire year. 

And what a year 2010 has been. It has stretched me and changed me, it has brought me more tears and more joy than I thought was possible. I'm glad to be starting a new year and am eager to see what 2011 holds for our little family :)

Did I miss out any of your favourite posts? Leave a comment so I know which ones were your favourites.