Thursday, May 30, 2013

Best Buddies

Kids here in Hong Kong start playgroup and preschool very early. Because Maddy is not delayed socially, cognitively or behaviourally, I thought it was important to get her into a class where she could meet some other kids her age and interact with them. So when she was 18 months old, I signed her up for a playgroup that she attended for three months before her cleft surgery. I wrote a little about it here.

In this playgroup, she met two very sweet and very cute twin boys who really took a shine to her. Check out this photo from February last year... (the twins are directly behind Maddy in the blue jackets).

In September of last year, Maddy started going to preschool, or "kindy" as they call it over here. She has been attending five days a week, two hours every morning. She is at the same school as her playgroup, and I was happy to learn that these sweet boys would again be her classmates. 

One of these boys in particular has been a very special friend to Maddy. He's always looking out for Maddy, but not smothering her.

 Maddy adores him, and whenever I ask her who she saw at school that day, his name (along with the wonderful teachers who have made this year amazing for her) is the first mentioned.

 As you can probably already tell, they stick together like glue in class, often dressing up together and doing activities together.

 Check out where Maddy's hand is in the above picture! Cracks me up. 

We will be travelling in June, so I decided to take the girls out of school at the end of May to save a little on school fees. Tomorrow will be their last day at this school. 

In the new school year, Maddy will be moving to a new campus that I feel is more suitable for her physical needs. It is all on one level with no internal staircase, and also has access to a fantastic outdoor playground which the kids can use. While I feel this is the best choice for Maddy, I know that she will miss this very special friendship - as will I. 

So far, we don't see this little boy outside of school. I'm hoping that this will change. I sent a little note home to his parents today with my contact details, so fingers crossed...

I know that this friendship is just as special to these boys at it is to Maddy. When they had to choose their "best friend" to be the sun in their birthday celebration a couple of weeks ago, they chose Maddy. They also both wanted to give Maddy THEIR gifts that they received from the school at the Christmas play!

Whenever I think of Maddy's first friends, I will always think of these two gorgeous boys who have made Maddy's first year of "school" one to remember. I hope we are in touch with them for years to come! 

Tuesday, May 28, 2013

Spinal Surgery - but not for Maddy!

I mentioned in my previous post that I have had a crazy couple of months. Unfortunately, that involved a spinal surgery - and not for Maddy, this one was for me! 

For months, I have had this weird hip pain on and off. I figured that the pain was something in my hip and was worried that it could be early-onset arthritis, something that I know that carriers of the DD gene are supposedly more susceptible to (according to our geneticist). I've been going to physio and chiro, and basically just trying to live with it. 

At the end of April, however (when I was only about 8 weeks pregnant), the pain in my hip and leg become unbearable. Since I am pregnant, there is little pain relief that can really help. I didn't even bother taking panadol as I know it's virtually ineffective, particularly in extreme pain. I was seeing my physio and chiro multiple times a week and they both agreed that my symptoms were consistent with a herniated disc in my spine. This isn't the first time I have herniated a disc, I wrote about my previous experience here -  but this time was far more severe.

Even with the treatment they were giving me, I continued to deteriorate. The pain was for me worse than childbirth. The intensity was similar - but it kept going on and on for days and days, with no purpose and no end in sight. At least with childbirth, it doesn't generally go for more than 24 hours, and with the arrival of the baby, all pain stops virtually instantly. 

After a few sleepless nights which involved sobbing in the early hours of the morning, my husband suggested that we might want to consider going to the hospital and seeing if they could do anything more for me. I didn't want to leave the kids at 3am with no warning, and I still thought "Surely there's nothing they can do that I'm not already doing"! I told my husband that I would go to my 9am chiro appointment and see what she had to say.

After showing up at my chiropractor's office (and having another break-down there), she agreed with my husband that I should go to the hospital. At that stage, I couldn't walk without being virtually bent in half, I was in pain continuously - but it was worse with movement. Just getting to her office was excruciating.

I showed up at the hospital and after yet another break-down, the doctor decided to admit me. His plan was to treat me conservatively and to hope that I improved naturally. Many of the regular treatments such as injections and strong anti-inflammatories are not safe while pregnant so I was still only on panadol and a weak anti-inflammatory, but I could have physio in my bed twice a day and have a lot of assistance from the nursing staff. After a few days, my pain levels decreases significantly. 

My nerve function, on the other hand, began to deteriorate. I started to have pins and needles in my foot and up my leg, and also started to have increasing muscle weakness on that side as well. Due to the nerve complications, my doctor decided that we must do the MRI to determine whether surgery was necessary. 

At this stage, I was 10 weeks. Both MRI in the first trimester, and surgery have risks to the baby. The risks of the MRI are more theoretical and after a bit of research, I felt strongly that we should at least do that so that we had a clear picture of what was going on. 

I had the MRI on May 13 and it showed that I had a moderate hernia in the lumbar region of my spine (I think L4-5 from memory) which was pressing directly on my nerve. In the situation that the hernia is compressing the nerve, surgery should be performed promptly to prevent permanent damage to the nerve. The doctor delivered this news to me on the Monday evening and added that the only available time that week would be the following afternoon. I agreed that we should just get it over and done with, so the surgery was promptly planned and scheduled for the following day!

My main concern with the surgery would be the effect on the baby. My research showed conflicting points of view as to the safety of surgery during first trimester pregnancy. Some reports noted that the miscarriage rate was inflated to 10%, but others claimed that the miscarriages were related to the underlying health issues that required surgery in the first place. Generally, abdominal surgery seemed as though it carried greater risk than other surgeries - but still, I knew that any spinal surgery is considered major so I had my fears. 

All went well in the surgery - although the surgeons noted that my hernia was more severe than it seemed on the MRI. In addition, I had an additional hernia one level up. The hernia at the L4-5 level was 10mm in diameter and was pressing directly on my nerve. The hernia at the L3-4 level was smaller, only around 3-4mm in diameter and had less neurological impact. They advised us that surgery would be around 1.5 hours long, but as they had more to do than previously expected, it ended up being 2.5 hours. 

The first few days after the surgery, I still had some pain in my hip and leg, however the severity did decrease. Also I noticed almost immediately that I could stand straighter than previously and had a wider range of movement. On the third night, I managed to sleep a lot better and woke up in almost no pain! I was discharged on the Friday.

Since the surgery, my pain is down to almost nothing. I can stand straight and have almost a full range of motion. On the downside, however, I am not allowed to pick up my kids until a month post-op. I also still have some residual nerve damage that may take a couple of months to fully heal. As a result, I have a bit of a limp and have been using a walking stick for long distances. I will take that over the pain any day though!

We have had ultrasounds to check on the baby and the doctor has confirmed that there was no harmful effects on the baby as a result of my surgery or any of my treatment. I'm so thankful to know that! I will definitely need to take it easier throughout the rest of my pregnancy though!

I never would have guessed that it would be ME having spinal surgery when we've been talking about it for Maddy for ages. I think also that being the patient instead of the parent for once has given me a bit of a greater understanding as to what it is like for Maddy...

Monday, May 27, 2013


This post has nothing to do with Maddy, and everything to do with Maddy. In a nutshell, we will be welcoming our third child into our family in December! I'm currently 12 weeks pregnant and have had a crazy couple of months. I'll post more about that in another post!

When Bernard and I were engaged, we discussed many things - thoughts on parenting, where to live, schools, and of course how many children we wanted. Although we disagreed on many MANY things (particularly coming from different cultures), both of us always wanted three children.

When Maddy was born and diagnosed with diastrophic dysplasia, we found out that we also were carriers of this condition. What this means in practice is that for ANY pregnancy, we have a 25% chance of that child having the same condition. For a while, I wasn't sure if I wanted to go through that again - honestly, my last pregnancy was very traumatic for me and still sometimes, thinking about it, it's still a bit raw. Maybe it always will be, I don't know. But for that reason, in some ways I thought maybe it was better to just be happy with the two beautiful daughters that we already have rather than going through that again.

When we originally saw the geneticist right after Maddy was born, we were offered preimplantation screening. This could eliminate the possibility of diastrophic dysplasia altogether. What preimplantation screening involves is going through IVF. When the embryos are ready to be implanted, first one cell is extracted and the genetic test for diastrophic dysplasia would be performed. Embryos which are found to be affected would be destroyed while only embryos which are unaffected or carriers would be implanted.

For us, as known carriers of a genetic disease, this cost would be covered mostly by the Hong Kong public health system, making it an affordable option. That said, we weren't entirely comfortable with the moral implications of doing so (again, more for another post). So in order to have another (biological) child, we first had to accept the 25% chance of having another baby with dwarfism. 

One turning point for me was when I realised that even IF this baby does have dwarfism, it would not be the same traumatic experience as our last pregnancy. Of course some things would be similar - it would still be considered a high risk pregnancy, the baby would still need to be born in the public hospital, we would still be looking at NICU after the birth most likely... But there would be none of the same fear about what the condition was and in particular, whether it was lethal or not. 

My initial thoughts at this pregnancy were so different after the last pregnancy... it was more "hold your breath and get ready!" After the last time, I'm sure I will always be a little scarred, a little cautious with my excitement. 

That all said, we are looking forward to meeting our little one later in the year - and my prayer is that God will bring us the child that He knows our family needs... Dwarfism or not, boy or girl, I trust that He already knows this little one and we are looking forward to what the future holds!