Wednesday, February 26, 2014

Tenotomy scheduled

Unlike Maddy, Briella has been "blessed" with the typical diastrophic clubbed feet.

Currently, the most effective treatment for clubbed feet is the Ponseti method, which involves casting and re-casting the feet weekly to stretch the tendons and ligaments into their correct positions. Diastrophic clubbed feet are not typical, but this kind of casting can help. There are a few problems with casting diastrophic feet, however - the feet and legs are tiny tiny tiny, and most diastrophic clubbed feet have very tight Achilles tendons causing the feet to point downwards. These issues combined can make it very difficult for casts to stay on the feet. 

For the past three months, we have been using an adapted method which involves using physio tape to pull the feet into a better position, along with stretching the feet multiple times a day. Using this method, we have seen some improvement, however it is not reasonable to expect that this method could produce the same results as serial casting. Our ortho thinks we have achieved close to the limit of success with this method alone. 

Many kids with tight Achilles tendons (including kids with diastrophic dysplasia) can benefit from a tenotomy. This procedure involves snipping a bit of the Achilles tendon in order to loosen it. We've known for a while that this would be a necessity for Briella - and at our appointment with our orthopedic surgeon yesterday, he scheduled it for next Thursday, March 6th.

As far as procedures/surgeries go, this is very minor (I'm not even sure whether to call it a "surgery" as she will not need a general anesthetic even - she will have sedation and a local anesthetic). There is even a youtube video of the procedure which I will not link here. After the procedure, the casts will be better able to stay on Briella's feet as the feet will be able to be "flat" rather than pointing down. 

While this will hopefully be great for Briella's feet (and therefore her future ability to walk), it will provide some logistical issues as currently, I mainly carry her in an infant carrier which probably is not suitable for use with casts. We might have to start using a stroller more, which provides other logistical issues - but such is life in Hong Kong!

Please keep us in your thoughts and prayers over the next week or two as we prepare for the procedure. Hopefully we will have great success, and the casts will now be able to stay on Briella's little legs. It shouldn't be terribly painful or uncomfortable for Briella, however she might not like the idea of having the casts!

Saturday, February 8, 2014

Updated "Medical Story" page

It has been a long time since I updated the "Maddy's Story" page on this site - last update was in May 2012 before Maddy's cleft repair! At the time, she'd only recently begun to walk, and I was stressing over her speech issues. We still weren't even sure whether or not we would have another child. It definitely was way past time for an update!

So if you'd like to hear our new, much brighter "medical story", go and check it out here.

Tuesday, February 4, 2014

Faith, Hope and Joy

I started this blog, "Holding onto Hope", when I was in such a dark place - unsure of the future, unsure as to whether we'd be bringing a baby home from the hospital. When Maddy was born, we were still "holding onto hope" as we learned how diastrophic dysplasia would affect our lives. As Maddy has grown and blossomed into an amazing three year old who already has exceeded the doctor's expectations, we are no longer in that dark place any more. "Hope" isn't something that we have to search for and cling to so strongly any more. Hope is all around us. 

When Lana, my oldest, was born, we decided we'd give our kids first names that we liked, and "sentimental" middle names. We were tossing up between passing on "Joy" (my middle name), or "Anne" (my mother is Dianne and Bernard's grandmother is Anna). We chose "Joy" mainly because it sounded better with "Lana". 

We had planned to continue this with Maddy, using family names, but through the trauma of the pregnancy, "hope" was something that was so important to us. It was only natural that she would become "Madeline Hope" - breaking our tradition, but yet starting a different one.

With Briella, "Faith" was the most natural choice. In fact we chose it before we were even pregnant with her. The bible says that "Faith is the confidence that what we hope for will actually happen" (Hebrews 11:1) and this suits our experience with Briella so much. Our hope with Maddy was so vulnerable - the odds seemed against us all the way. With Briella, our faith is confident - we have walked this road before and know that it goes somewhere good! 

For a while now, I've felt that the title "Holding onto Hope" didn't really fit where we are at this stage of our lives, however I haven't been blogging as much and haven't been bothered to change it. And then there was the question of what to change it to? 

"Faith, Hope and Joy" reflects our family so much better, where we are at today. We aren't in that dark place any more. We are in a place of joy and confidence in the future. We still have concerns and worries, but far less than three or four years ago. I still plan to use this web address rather than moving the entire blog over to a new address, and I'll continue to post both medical updates for Madeline and Briella, and about how dwarfism affects our lives.

So welcome to "Faith, Hope and Joy"!!