Saturday, February 12, 2011

Medical Update

This week, we were very busy with various appointments. We had three different therapies and one doctors appointment.

We started the week out with physiotherapy on Monday and Maddy is doing pretty well there. In fact, she showed us her brilliant skills when this week she rolled over for the first time! At six months old, that's a little delayed but considering a) her limbs are so much shorter than the average baby, and b) she's spent two months with her legs pretty much immobilised by the Pavlik harness, I think that's pretty great!!

Tuesday was our one day off this week, and Wednesday we had some Occupational Therapy. Maddy is still struggling to use her hands, and it frustrates her a lot. She can pick things up, as seen in this previous post, but she still struggles to hold onto things for any period of time. We have been going to the Children's Hospital for OT but they will refer us to a hospital that is closer to us for continued follow up for Maddy's motor skill development. 

Thursday saw us back with another Occupational Therapist, this time for the oral motor training, to see how Maddy goes on solids. I waited until this appointment to introduce solids for Maddy - I knew most likely she would be fine since she drinks her milk very well now with no choking, but I figured better safe than sorry. And Maddy was much like any baby, I think. At first, she was curious and somewhat interested, she swallowed the first few mouthfuls well but then tired of the experience when some cereal got into her nose through the cleft palate. Her cleft won't affect her eating solids at all, but she will have more food going into the nasal cavity and so there can be a bit of discomfort, but she'll learn :)

Speaking of the cleft, today we had our first appointment with the cleft palate surgical team. I was looking forward to this appointment as it would give me some idea as to when Maddy's palate repair surgery would be. Palates are repaired at different times in different places but here in Hong Kong, the palate is typically repaired between 9-12 months old. Although since Maddy has had airway complications, they will delay the surgery until she is between 18-24 months old instead. When the cleft is repaired, it obstructs the airway a little so it can exacerbate any airway issues, so by waiting until Maddy is bigger and stronger, the risks are lower. In some ways, I'm a little disappointed because I tend to be impatient, I know it needs to be done so I just want it over and done with already. Also by waiting longer, it can lead to more speech complications - and if Maddy is anything like her big sister, by the time she's 24 months she could have a vocabulary of hundreds of words and be able to communicate in full sentences! But I know I need to be patient because it is really in Maddy's best interests to wait. Ultimately breathing is more important than speaking, right? ;)

Next week will be another big week for us. Monday and Tuesday, we have some more "staycation" plans, then on Wednesday we have more physio (I want to ask them about the possibility of transferring Maddy's physio to the hospital closer to our home as well - we're travelling to the Children's hospital for that as well).

Thursday, the 17th, will be a big day for us all. For one, it is the first anniversary of when we first heard the words "skeletal dysplasia" - the day when we had scheduled the amniocentesis that we didn't end up having, the day that we first heard the news that Maddy might not make it. It's been a bit emotional, remembering all that was happening this time last year. Bittersweet, really. 

Then of all things, the hospital had to schedule an MRI on the same day this year! I'm not really looking forward to it - the MRI itself is scheduled for 3pm, but Maddy has to fast from 11am and we have to be admitted to the hospital at 1pm for the preparations. I know Maddy and she probably won't be able to get much sleep in between everything else, and usually if she's cranky but cannot sleep, a feed will settle her - but we don't have that option. I joked with someone that I'll probably be counting down to when she's sedated ;) So if you get a chance to remember us, please pray that Maddy has a fantastic morning and eats well before 11am so she is settled at the hospital rather than hungry, tired and cranky! The MRI is primarily to examine her hips and to see if we need to do anything more to manage them at the moment. 

The one appointment now that I'm really counting down to is on the 22nd. We will follow up with the pediatrician who cared for Maddy in the NICU. I'm sure that most of the appointment will be very routine, but I want to ask if Maddy is safe to fly now. I think she SHOULD be ok now, the ENT said that she most probably would be fine in a plane - but I want to know this doctor's opinion before we go booking anything. Both Bernard and I are in desperate need of a break, and as soon as we get the news that she is ok, we'll probably be booking flights back to Australia that afternoon! Bernard hasn't been back for over two years now, and for me it has been a year and a half. Last time Lana and I were there, Lana was ten months old and not walking yet! So here's hoping that March will see us back in Australia :)

And that's all the "medical" news I have for now! Until next time...


  1. What a wonderful mile stone rolling over is! I hope you caught it on video...

  2. Oh I've tried, but whenever the video camera comes out, she's more interested in looking at it than rolling! I'll keep trying though :)

  3. I had my cleft palate surgery somewhere around 18 months old and after a couple of years of speech therapy, I've had no lasting effects. I also had to have a follow up surgery around 4 years old and that was the end of my cleft palate surgeries =)

    I hope you guys get to go back to Australia next month!!!

  4. Like the little update, I hope you all get to go back to Australia.