Long time, no blog.

Good Lord, how time has flown. I’m sorry for not updating the blog more regularly but I was inspired to begin the blog to document Hazel’s DDH treatment and once that impetus was removed, I didn’t seem to have anything to say. In addition, my husband revealed he was unhappy in our marriage and asked for a separation. Most of my year has therefore been taken up with first trying to avoid that event and subsequently trying to cope with this new direction.

And so I guess now I have something to say again. My time with my children will be divided and so I am eager to have a record of all our fun and happy times, to keep me smiling during those moments we will have to be apart.

Thanks to all who have followed Hazel’s journey thus far. I will continue to update with any DDH news but of course we hope that chapter of her life seems to be closed.

The last step..

For all those wonderful DHH parents who have been following Hazel’s progress, my apologies for not keeping up with the blog in recent weeks. It was easy to find time to write posts when Hazel was in the spica as her restricted movement lead to a diet of ABC Kids and plenty of time for Mum to hop online. Since she has been out of the plaster however, I’ve really wanted to take advantage of her good health and freedom to get out and about.

Hazel is walking very well now. I want to say fluently, which seems an odd word to apply to movement and not speech but her ‘toddle’ is quickly disappearing and her limp, which would have surely alerted us to problem if I had not otherwise developed suspicions, is completely gone.

This is Hazel’s hip in the x-ray that started it all. I remember picking it up from reception and sneaking a peak whilst waiting for my doctors appointment. The accompanying radiologist comments noted the complete hip dislocation and underdeveloped femoral head but I didn’t need them. I really can’t describe the sick and sinking feeling that hit me the moment I saw this picture.

 

You can see that her right leg (which is on the left of this picture), is a normal hip with the femoral head in its socket and all is well. The left leg unfortunately has abandoned its usually place of rest and gone for a little wander about. When I tell people that Hazel’s leg was dislocated, they wince and ask if that didn’t hurt her? Looking at the x-ray, you’d certainly think it would, but Hazel certainly never gave any indication that she was bothered and happily walked and even ran with a limp. Of course hindsight is 20-20 and I can see many thing in the past that indicated not so much pain, but a definite reluctance or difficulty with her left leg, but never enough to get us thinking.

Of the whole experience, I would say that only the first 48 hours following her surgery were worse in terms of emotional turmoil during Hazel’s treatment. The period between discovering her DDH and actually knowing what was going to be done about it was very difficult because you imagine the very worst. Years and years of surgery and wheelchairs and braces and complications from surgery and scars and death. You try to focus on the positive but it is hard not to give way to despair. It is funny to think that having a conversation with a surgeon in which he tells you he is going to chop out part of your daughter’s hip bone and shove it into another place, before wrapping her in plaster from toe tip to sternum could be a relief but it was. Known strife is just so much easier for me to bear.

Those of you who have followed my blog know what comes next. Some of it was incredibly difficult but most of it wasn’t really so hard at all. Hazel is walking now and as crazy as it sounds, I’m finding it hard to remember there was a time when she didn’t walk. She walks, she dances, she swims and you can see she is starting to think about running.

So I felt very different yesterday when I took her for her follow up with Gary Natrass. Nothing has given me the idea that she isn’t 100% but I was looking forward to her new x-ray and seeing her new hip for the first time. So with no further ado, here she is (before and after):

 

Just like the first x-ray, I don’t think you need to be a radiologist to see that things are better here. Gary Natrass was pleased to see her happily walking about his room and said that her progress is better than would usually be expected at this point. He said that she has  good movement in her hip, and that other children often still have very stiff hips at this time after surgery. I don’t think it is in the nature of a surgeon to be effusive, but I left the appointment feeling as though we had really won the DDH lottery. I’ve made a number of DDH friends during my experience and I can say that certainly within the number I encountered, such a short treatment time is uncommon. As we chose the more invasive and risky option of surgery for Hazel, rather than the reduction only, it also feels good to know that our choice was a good one for her.

There is one final thing I wanted to mention because I know DDH parents read this blog and I feel like it is probably something many of us feel, particularly those with a late diagnosis. A good part of my despair when Hazel was diagnosed was guilt and shame over my failure to have the DDH identified earlier. I was truly terrified that the surgeon would berate me for not realising for 18 months that my daughter’s leg wasn’t in her hip. I mean, look at the x-rays! How does a loving parent miss that? On top of that, I hadn’t taken Hazel for the maternal health clinic checks after her newborn days as I just found them frustrating and unhelpful. I didn’t think anything of her not liking to bear weight like her brother, or crawling with an odd gait.

If your child is diagnosed late, I’m guessing you will probably suffer the ‘what ifs’ as I did, and if you are all I can say is that they ease as you move through the treatment and are able to focus on ‘what is’, and what you are doing to move forward. The feeling is very isolating because, as with all shame, you don’t exactly feel like proclaiming your failure to all who draw near. It has been around 4 months since Hazel’s diagnosis and I can only now share these feelings here. If you care enough about your child even to feel guilt over a failure to pick up a problem, then rest assured you are a very good parent indeed.

Thank you so much to everyone who has offered support, and also to those who have just stopped by to read the blog. It is really comforting just to feel like someone is listening.

Old milestones in a new year

Hazel is standing again. She had been pulling up on furniture and the like but was holding her left leg out quite a way from her body, so it was more that she was standing only on her good leg, rather than her actually standing normally. Over the last couple of weeks, her leg has slowly moved such that she is now holding it much more beneath her, rather than out to the side.

A result of this is that I can see now that her left leg is now longer than her right. It is particularly noticeable at nappy changes, when I gently move her leg down for comparison, I can see her knees don’t align. I contacted the surgeon as I was concerned and he assures me that the leg difference is normal and only a result of the stiffness in the hip. He says that we don’t need to do anything at this stage and there is no need to worry which is a great relief of course. I’ve been very lucky that Mr Natrass is happy to take email questions and he is very quick to provide answers and reassurance to this anxious mum.

So now I’m less paranoid every time she gets up on two feet and I don’t think walking will be that far behind as she is already happy to walk if pushing something for support. It is funny that my nephew, who is nine months younger, is now learning to walk, just as Hazel is relearning. She will have learned to walk both before AND after him.

So much to tell you.

One thing we have noticed with Hazel since her surgery and entombment is that she seems so much more verbal. I’m sure part of it is that we are making that much more effort to understand her, to make the experience for her as pleasant as possible, but I’m also certain that being unable simply to wander over to something she wants has prompted a language explosion. She greets us every morning with a cheery  ‘Hello!’, usually followed not long thereafter with a hopeful ‘Stroller?’ and her vocabulary in general is much expanded.

Of course now that she is clued in to the fact she can order us around, she likes to tell us her every whim and thought and sadly her much of her vocab is not actually that comprehensible and so we spend a lot of time trying to decipher ‘Quibble boo thwa’ whilst she squeals in frustration. She is gorgeous though and seems happy to endure endless games of twenty questions as her silly parents try to figure out what it is she wants.

The Spica Table

 

 

I decided to get all crafty and see if I could build a spica table. I’m not so bad at creating crafty things when I actually get on and do it, it is procrastination that is my enemy but I wanted to give it a go. I borrowed a drill and jigsaw from my Dad and set off to Bunnings. The chair was actually my main concern as a table can be built pretty simply. In the end I found a simple stool at Bunnings that I added a back to and it works very well. I painted the top of the table with blackboard paint but thus far the chalk doesn’t seem to want to dust off (I haven’t tried a damp cloth though) so I don’t know how successful that part of the experiment was. Total cost of materials was around $90 (we did have some nails and screws already that we used though).

 

And here is the table in action (sorry for the crappy quality. I used Linus’ point and shoot):

We also purchased a Cuddle Buddy which has been great for her to sit on. You can see her below when we have used it as a seat but it is also fantastic for her to lie on for tummy time. It isn’t cheap at $100 for the body pillow but I’ve found it a worthwhile purchase.