Climbing

For many people with dwarfism, their most valuable "tool" is the humble step stool. We have a few around the place, mainly for Lana to reach the bathroom sink to wash her hands. This one ended up being used for a footstool at our keyboard and as such, lives in the lounge room. The kids have been using them as seats, but tonight, Maddy figured out that with the stool, she can manage to climb onto our sofa. Not a small achievement, given that the sofa is around the same height as Maddy's nose! 

I think I need to get more of these stools, and also figure out how to make the bottom slip-proof. We need to be very careful to hold the stool while Maddy is climbing, otherwise it goes flying from underneath her. I welcome any suggestions!

(and how's that? No posts for six weeks and now you guys get two in a day ;) )

Playground Independence

Playground independence has been a long time coming for Maddy. Many of the playgrounds here in Hong Kong have large steps which are difficult for little legs to climb (and by little legs, I mean legs that are possibly still shorter than the average newborn baby's!). Then there are high bridges with not much protection at the sides which freak me out, even though I'm not usually a paranoid parent (it would be so easy for her to fall). Last of all, there are the other kids. As you can tell in this video, Hong Kong parks are crowded places and kids are very interested in Maddy, who honestly does look too small to be walking as well as she is. Many of them want to hold her hand and inevitably knock her down in their efforts to be "helpful". 

As the weather cools down, we find ourselves at the park more and more frequently - and this year, Maddy is starting to hold her own! She has mastered the smaller stairs, she can go down just about any slide and controls her speed with her shoes, and she avoids the extra-friendly kids as much as possible. It makes me so proud!

Talking

Maddy's speech has been one of her main areas of delay. I've spoken about her issues here many times before, starting in this post nearly a year ago (that's half a life-time for a 2 year old!) and in greater detail in this aptly named post, "Worry" which was subsequently followed by "Communicating" less than a week later. Speech for Maddy has been a bit harder - mainly due to the cleft palate. Her "receptive language" (that is, the amount of language that she understands) is pretty average/age appropriate. Since her surgery, her vocabulary has been improving exponentially. Currently, her main issue is with articulation (ie, what she does say is very difficult to understand - even for people who are with her all day, every day). 

I know though that she will "catch up", but it will take more practice and speech therapy. We have a really nice therapist who we have been seeing weekly, and sometimes I have to remind myself that Maddy's cleft surgery was only 4 months away - so really, she's only been talking for 4 months. When that is considered, she's doing awesome!

I shot this little video in the bath a week or two ago and thought I'd share it to show you all what her speech is like these days:

(transcription)

Me: Can you sing "Twinkle Twinkle little star?"
Maddy: Twinkle twinkle... HOLD!
Me: No, you can't hold - you're in the bath.
Maddy: Hold please...
Me: No, you cannot
Me: Sing twinkle twinkle
Maddy: Baby!
Me: Twinkle twinkle... oh, Baby

Maddy: Bath!
Me: Ok, Baby do twinkle twinkle.
Maddy: (singing "Twinkle Twinkle") - Again!
Me: Again? What's baby going to do now? Maddy? What's baby doing? Oh - bye bye baby!
Maddy: Bye bye baby! Bye bye baby! Bye!

Meet paralympian, Grant "Scooter" Patterson

I love reading stories about other people with diastrophic dysplasia and the things they have accomplished. It's a rare condition and not easy to find stories of people specifically with this form of dwarfism. Two years ago, I first read about Chris Errera, a pianist who has since gone on to appear on The Rosie O'Donnell show.

I first heard of Grant "Scooter" Patterson when Maddy was still in NICU. Prof Sillence brought a few photos of people with different forms of dwarfism who had been patients of his. Scooter was one of them. I didn't realise at the time that I would also read about him in the news paper.

A year or so ago, I stumbled upon this story of Scooter I copied the link to a draft post intending to share it here but never got around to it. It is only because the paralympics are on at the moment that he's come to my attention again.

A dear family friend (Hi Aunty Susan!) was talking to my parents and mentioned that she'd seen Scooter on TV and thought that "diastrophic dysplasia" might have been the same thing that Maddy had. My dad looked him up and sent me this story, complete with a video!

I love how Scooter inspires me to keep Maddy fit and active - particularly with swimming (as a low-impact sport, it is perfect for someone with joint issues). Who knows, one day we might see Maddy in the paralympics too!! Why not??

(an interesting side-note: Scooter's next event in London is the S4 100m Freestyle. Also representing Australia in the same event is Amhed Kelly, the brother of the X-Factor contestent, Emmanuel Kelly.)

Scoliosis and other stuff

Wow, it's been a full month since my last post! It's been a great and busy month. We had two weeks in Australia which was fantastic, then since we've been back I've been trying to catch up on uni work (I'm still behind!), we've had a bunch of appointments for Maddy, and we've been trying to enjoy summer as well. Also, we have a very special 2nd birthday coming up in two days! 

We've had a bit of a hard time finding shoes to work with Maddy's new insole orthotic - her feet are so small and wide. We have a pair that are ok but are really a size too big for her. We tried to find a smaller size, but they don't sell them in a solid rubber sole here in HK - so the pair that did fit her well didn't support her feet as well as they needed to. I've ordered some from the US that should work, fingers crossed! It's always a risk when you can't try them on before buying them.

In other news, Maddy had her orthopedic appointment yesterday. She sees two teams of orthopedic doctors - the spinal team and the pediatric team. The spinal team follows up on her spine issues (obviously) and the pediatric team follows up on everything else. The appointment yesterday didn't go as well as I'd hoped. 

First of all, Maddy's scoliosis is progressing. I'd suspected as much since I'd noticed a bit of a hump in her upper back. It is currently at a 32 degree angle. It's too early for surgery now, but we will keep an eye on it and within a few years, it's likely that she will need a spinal fusion.That's one surgery I was hoping to avoid, but I know it's fairly common for people with diastrophic dysplasia.

Secondly, the pediatric team are still quite concerned about Maddy's hips. The joint is still very shallow and they are concerned about possible dislocations. If the joint really is at risk of dislocations, she may need a "hip containment surgery" to protect the joint.

For both of these issues, we will need an MRI in order to get more information. This should be scheduled for the next month or two - and I'm not looking forward to that! For MRI's, they need to place the IV cannula, which is always quite tricky and traumatic for Maddy (and me!!). You can read about our last cannula/blood test experiences here and here. The MRI in itself is fine, and Maddy tolerates the sedation well too - it's just the IV which is rough.

I was going to add some pics but blogger is taking forever so will add them next time. Hopefully I'll update sooner than next month!

Cross Face

Yet again, it has been way too long since I last updated. I have lots to share - in brief, Maddy has new shoes! Her AFO's have been retired and replaced with an orthotic insole that are placed inside regular shoes. Also, her speech is starting to develop - although she still has a long way to go there. We will be heading back to Australia tomorrow for a brief visit, just me and the girls. 

I mainly wanted to share this cute video - Maddy is turning into a little actress, making faces at will. Here she is, showing off her "cross face".

Enjoy!

Speech

It has been so long since I updated this blog! Maddy's surgery went fantastically well. I had heard and read that the first two weeks would be hard, but Maddy seemed as though she was back to "normal" within a couple of days. She would still get frustrated by the arm splints, and by her inability to eat regular food - also once she came home, she asked for her dummy more, probably because it was part of the whole bedtime routine. In the past month since surgery though, she's adjusted well. She no longer needs the splints and can eat almost anything (although we have to keep really hard, "pointy" things out of her mouth still). She has also stopped asking for her dummy.

I do think that in the last month, there has been some improvements in Maddy's speech. She seems to be saying a lot more now - however it's still not very clear and few people besides those of us who know her best can understand her. Some words, she can say perfectly (eg, Daddy, Yeah, No, Hi, Bye...) but most are a bit of a stretch (eg bubble is "guggle", yoghurt is "ger", bath is "ba" or "ga", and so on...)

Since Maddy is now getting close to two, I think it is time to put her into speech therapy. This will be her first private therapy - everything else so far, we have had through the public system. I would have done speech through the public system as well, except since we are on the waiting list for therapy at the early intervention centre place, we are apparently ineligible to do anything more than to just wait (I don't understand why we are eligible for public physio and OT in that time but not speech, but ah well). 

I've been looking around a bit and some places are really expensive. One place wanted to come to my house and they would charge me $500HKD (around $65USD/AUD) for 30 minutes travel round trip, another place will do an assessment for $5000 (around $650). These places are "expat places" where the therapists are all Westerners, as are many of the clients. I decided to look around for something that was a bit more in our budget. I finally found this one place and the therapist spent 20 minutes talking to me on the phone yesterday (and didn't charge me ridiculously for that!) so we're going to try there. She will have her assessment on Saturday.

Maddy's speech is something that I have been concerned about for a long time and hopefully we will see even greater improvements soon :)