We are a family of five. Mum, Dad and three beautiful little girls, two of whom have diastrophic dysplasia, a rare form of dwarfism. This blog was started during my pregnancy with my second daughter and mainly talks about the ways in which dwarfism affects our lives.
One of Maddy's favourite things to do is to climb. She sees steps, she wants to get up them! She also climbs all over any toys or boxes that are at home. She loves to get up on them, stand on the highest point that she can reach and clap her hands at her own cleverness.
Lately, the weather here in Hong Kong has been beautiful and we have started to take Maddy down to the park. There are these steps down there and Maddy will spend ages going up and down - which is really good physio for her! (and much cheaper and easier too!!)
I thought I'd share this short video. Please excuse the last 5 seconds - Maddy started inching further and further back and I thought she was going to fall off a rather large drop on the side. She managed to sit up with JUST enough space and not fall down - but better safe than sorry ;)
I recently looked up the quote often attributed to Isaac Newton "If I have seen further it is by standing on the shoulders of giants." Isaac Newton did say this phrase, but I never knew that he did not coin it. It had been around for hundreds of years before Newton was born. And little did I know that the phrase originally was "dwarves on the shoulders of giants"!
According to Wikipedia, the earliest recorded use of the phrase was by Bernard of Chartres, "Bernard of Chartres used to say that we [the Moderns] are like dwarves perched on the shoulders of giants [the Ancients], and thus we are able to see more and farther than the latter. And this is not at all because of the acuteness of our sight or the stature of our body, but because we are carried aloft and elevated by the magnitude of the giants."
I like the way that Isaiah di Trani puts it: "Who sees further a dwarf or a giant? Surely a giant for his eyes are situated at a higher level than those of the dwarf. But if the dwarf is placed on the shoulders of the giant who sees further? ... So too we are dwarfs astride the shoulders of giants. We master their wisdom and move beyond it. Due to their wisdom we grow wise and are able to say all that we say, but not because we are greater than they."
I love the imagery that comes to mind with this quote - and how I hope for Maddy that she will have many "giant shoulders" to stand on!!
Jay has diastrophic dysplasia, the same form of dwarfism as Maddy. I love "finding" people with DD and seeing what they are doing with their lives. Have a little watch of the video on the home page to see what Jay has been up to. It made me smile, and I hope it makes you smile too :)
As promised, I managed to get a video of Maddy's new confidence in walking. She's had the skills for a while but lacked the confidence and motivation. This video was taken at her playgroup, where we go three mornings a week. I think going to a playgroup with typically developing kids her age has really helped her to want to do what they are doing - and now she is :)
I don't know how it is with most kids, but with Maddy it seems as though she develops in these bursts. She'll plateau for a while, using the skills she's gained - then all of a sudden, she starts doing things she's never done (successfully) before.
Just lately, she's gone through another one of those bursts. It has been nearly four months since Maddy's first steps and I thought for sure she would be walking more by now - but in her latest plateau, Maddy has been satisfied only walking when prompted, and taking a maximum of 10-15 steps before sitting down. Her balance has improved tremendously in that time, but I think she lacked motivation to really walk. Firstly, her butt scoot is fast and efficient and walking for her is much slower. Secondly, she is already upright when she's butt scooting - and standing doesn't even make her THAT much taller ;) And thirdly, her hands are already free when butt scooting, so walking doesn't "free her hands" like it does for babies who go from crawling to walking. Just last week though, Maddy decided that she'd give it a go and she has tentatively been walking all over the place! It's still slow and a bit careful - but she is walking without me "motivating" her. I need to get a video of her walking - she's doing awesome - but so far I haven't captured it on camera.
The second thing that Maddy is getting better at is climbing - for a while, she has LOVED steps and would go up and down them. At my parent's house at Christmas, she really mastered going up and down a single small step. We were at Maddy's developmental check up two weeks ago and there were a set of about 5 small steps. Maddy was being really cranky for her fine motor check and I thought it was because she was tired - well as soon as she was released from her chair at the table, she made a beeline for the stairs and was instantly happy - she spent a long time just going up and down while I talked with the doctor afterward! At home, we have some toys which Maddy loves to climb on - a little stove which is close to the ground is her favourite place to sit and lately she also loves standing on it. She also loves climbing between our sofa and the chair next to it - as seen in this video I took of her last night (forgive the amount of skin in this video!).
Maddy's fine motor skills are also developing really well and she is starting to get better at using a spoon. It is something that she has struggled with and still is not expert at (her inflexible fingers don't help - and her wrist can't seem to get the right angle without a bit of help from the other hand) - but she has the motivation now and is getting better all the time. Here is a short video of her eating peas with a spoon :)
And here's another video of what usually happens after I take a video of Maddy and she wants to see it for herself. My kids both love to watch themselves - most videos we have of Lana these days end with her saying "I want to see my video now!" ;)
I'll have to work on getting a video of Maddy's walking skills - but for now, I hope you enjoy these three.
