Registered

Another pregnancy post! I'm growing, baby is kicking me constantly, the end is in sight! On Saturday, I'll be 30 weeks, I think. I keep losing count!

I saw my wonderful, amazing private doctor a week or so ago for my 28 week appointment. All is going well, baby is growing on her own growth curve. The cystic hygroma is still there but the doctor is unconcerned as her heart and blood flow is good. There's still time for it to resolve naturally and we are still hoping that it does. I think if not, they can drain it if necessary at birth, but of course we'd prefer it to resolve without needing any medical intervention!

Now that I'm in my third trimester, I knew I could not put off registering at the hospital I need to deliver at any longer. I have a love-hate relationship with this hospital. I've delivered all my kids there - but it is a public hospital and there is little sympathy or hand-holding. You have to insist on the things that are important to you otherwise you will be just one more "case" in their "production line". Medically, they are the best hospital in Hong Kong. Socially, I think they might be one of the worst - however there are a lot of bad hospitals (socially) here. A lot of outdated policies, rude nurses, people who should never have gotten jobs in hospitals. Being from Australia, it bothers me a lot - but the locals seem to accept it and don't let it bother them.

I went to make the appointment to register and got reprimanded by the admin staff for registering too late. She kept going on and on about how I can't register this late. I told her flat out "I don't want to be here either, but my doctors tell me I have to be here for medical reasons. We both don't like it, deal with it." (great attitude I know). 

The next day, I had my "registration appointment". I had forgotten that it took SO LONG... you have to watch the same videos on the hospital system and breastfeeding that I have sat through two times already before you are even allowed to register. After an hour of this, I wanted to ask the nurse if I could skip the videos as I had seen them twice in the past 5 years already. I got myself a talking to again for asking that. "You're wasting my time, it would be faster for everyone if you didn't bother me with these questions and just sat and waited for me to call your number." I went out and had a mini cry because these attitudes are exactly why I didn't want to be there in the first place. When I did have my appointment with her (45 minutes later), she was much more civil and I was too tired of it all to make more of a fuss. 

This week, I had my first appointment with the obgyn. I was already a bit worked up from my previous two experiences and wasn't expecting anything great, but jotted down some of my questions/requests to see if they can accommodate them. 

Basically what I wanted was:

a) as few follow up obgyn appointments as possible - I prefer to see my private doctor.

b) I needed to get in to see prenatal diagnostics so that they can "formally" diagnose this baby

c) I wanted to still be considered "low risk" for the pregnancy, as we know the diagnosis and there is no increased risk of premature labour or other pregnancy related complications - the only difference in medical care is specifically for the baby after she is born, not for me.

d) I wanted to discuss my options for pain relief during labour given my recent spinal surgery

e) I need to arrange to meet with the neonatologist (whom I have already emailed) to discuss this baby's care once she is born.

I was SO BLESSED to have one of the nicest obgyn's that I've ever had in my (now) three pregnancies at this hospital. She listened to all my requests and did everything she could to accommodate. I do not have to have ANY follow up obgyn appointments with the hospital at all until I am 36 weeks pregnant (way better than I was expecting!), but I do need to see prenatal diagnostics in the mean time. Prenatal diagnostics will arrange for the appointment with the neonatologist and geneticist.  In addition, I need to see the anesthetist before the baby is born to discuss which pain relief options are viable for me in labour. In my previous two deliveries, I had epidurals - mostly because this (backward) hospital prefers women to be still and silent during labour ;) I would actually like to try a delivery without an epidural but that would mean that I MUST be off the bed and moving around - which might not fit in with their ideologies so much. Anyway we'll see what comes of that. 

The only negative thing is that my private doctor does the glucose tolerance test between 24-28 weeks, and I had it done right at 24 weeks I think. This hospital does it between 28-30 weeks, so they are insisting that I repeat the test :( So that'll be my Saturday morning! (it's only offered on Saturdays, so annoying...) I also had to repeat my blood tests because there was apparently one thing that my current tests left out. 

All in all, registering at the hospital was better and worse than I expected. It needed to be done. Now it's done. We do what we have to do, right? I'd much rather not have to deal with them again at all but am trying to stay positive about it since I know this is best for baby...

Two new schools for Maddy

The month of September has been an extremely busy one for us all. Lana started primary school in the last couple of weeks of August, we moved house on the first weekend of September, and right after that, Maddy started not one but TWO new schools. 

Last year, Maddy attended a regular, mainstream kindergarten. For many kids in Hong Kong, they start kindergarten (or what we would call in Australia or the US, "preschool") when they are 2 years old. The first year is "nursery" then for the international education system, there are two years of "kindergarten" before they start primary school in August/September of the calendar year that they turn 5 (so 2015 for Maddy). 

Mainstream kindy has been a great thing for Maddy - it has allowed her to socialise with her typically developing peers and has challenged her to learn to do things that they can do. I would have loved to have kept Maddy in her old school for this year, however her classroom would be upstairs requiring her to make multiple trips up and down with 10-15 other 3 year olds, something I didn't feel was ideal. Her school, however, had another campus which was just as close to our house (but in the opposite direction). After checking it out, we decided that this campus was far better suited to Maddy's physical needs. 

So it has been a couple of weeks now and Maddy has been settling in quite well. She still sometimes has some tears at drop-off time, but they dry up quickly and she bounces out of class happy and talking about all the fun things that they did at school. She is now going to this school Monday to Friday, for 3 hours every day.

In addition to mainstream school, Maddy finally got in to a government-subsidised "special needs school" (or as they call it, "early education training centre", specifically for preschool aged children with disabilities and developmental delays). It has been a long two and a half year wait for this place to open up for us, but I have such a good feeling about this school. She now will be having all of her therapy in one location, the therapists will communicate with each other and with her classroom teacher there, we will have IEP meetings to discuss our goals for her so we as parents will be more involved in these plans and will be working more closely with her therapists. All in all, I believe it will be beneficial for us all to have this holistic approach.

At this special needs school - she is going 2 days a week - the group class is for 3 hours but with therapy on top of that (which sometimes is during the group class, and also sometimes either before or after class), she actually is there for 7 hours a week. She will have weekly individual occupational therapy, individual speech therapy as well as biweekly physiotherapy. Within the group class, they have weekly group speech therapy as well as weekly music therapy. The class is small - only six kids, and they all have various special needs. Maddy seems quite attached to a little boy who has autism. I don't know much about the other kids' needs. 

It's interesting (to me at least) to go back and read some of my previous thoughts on schooling here and here. The two schools which we have finally decided on do provide a very busy schedule for a three year old - however I feel as though this will be a good combination that we can work with over the next two years. In two years time, she will be starting primary school and hopefully the next two years will be great preparation for her so she can be as independent as possible by then :)

Now for a few photos:

First day of school

 Already working at spelling her name ;)

Checking out the Hong Kong traffic

Having a sick day in her 2nd week of school :(

Airing Date

I got this email from the producer of the documentary that we are involved in: 

Hello everyone,

Our story about rare genetic diseases will be aired on Monday, Sept. 30, 2013 at 8pm on The Pearl Report, Pearl channel. It will be replayed on Tuesday at 1am and Saturday around noon. It will also be uploaded onto TVB.com for a few weeks.

Thank you all for your cooperation.

Renato

For those of you who are in Hong Kong, please tune in! This show will also feature Nathan, who is Maddy's friend (actually I met his family shortly after he was born - they were googling for information about dwarfism in Hong Kong and came across this blog - you can read their original comment here: http://madeline-hope.blogspot.hk/2011/06/new-friends-part-1.html). 

For those of you who are not in Hong Kong, the show should be available through this link: http://programme.tvb.com/news/pearlreport/ - although it will only be available online for a few weeks so you need to get in early.

I will post again before the show airs, and will probably post my thoughts about the show afterwards. I have already emailed this to the producer:

Also a side note - having dwarfism can be for many a positive thing. In fact I know of couples where both the husband and wife have dwarfism and they would LOVE to have a child with dwarfism, would even prefer that to having a child without dwarfism. I know that many of these questions are focusing on the challenges etc, but please do not convey that dwarfism is all negative. Awareness of challenges can be a good thing, pity is not. Does Maddy sometimes need a bit of an extra helping hand? Yes. But she never needs pity. Pity is disabling - and while Maddy has challenges, such an attitude can limit her potential. Given a positive outlook and high expectations, people with dwarfism can be anything and do anything that anyone else can do - and probably with greater appreciation because they had to work harder for it. I hope that your show conveys that as well. 

 He has assured me that although the show does focus on the challenges faced by those with dwarfism, it will "end on a positive note".

We will see :)