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" :)
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