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.

Sleep, sweet sleep

Hazel slept through the night last night! There was a dummy replacement in the wee hours but that isn’t uncommon and then she went back to sleep until 7am. It was wonderful to get a full night’s rest although I awoke to discover my son had snuck in to our bed at some stage in the evening!

Today we began the spica table project. I had no plans to work from and so am just making it up as I go along but I’ll post photos tomorrow of my wonderful creation. Now we just have to hope she will sit at it.

One down….

We’ve made it to one week. Only five to go.

We’re actually tremendously lucky when I compare myself with every other Hip family I’ve encountered. They all seem to have experienced months, if not years of treatment with surgeries, traction, casts and braces so if we get away with surgery and 6 weeks in a cast, I will be thanking my lucky stars.

I have the night off tonight, as Hazel stays with my parents on Thursday nights and so am home with Linus enjoying the rest and relaxation. Mum is a bit worse for wear after a sleepless night last night but hopefully they can hold it together until pick up tomorrow afternoon. It is a real bonus for us to have family helping us out.

Small progress.

Hazel seems to be physically better, I don’t think she has any pain from the surgery, although I suspect there is discomfort from being stuck in the one position 24/7. She is finding it hard to adjust to being largely immobile though and sleeping is obviously much harder for her, which leaves her tired and cranky. I imagine it is much like trying to sleep when on a bus or plane; you get sleep but it is never as restful as one gets in bed.

I’m hoping she’ll find a way to become mobile and feel a bit more independent soon. We are taking her for walks daily which she enjoys and it is a nice way to break up the day for us. I’m back at work now so Hazel is with Ash, our babysitter and my parents through the week which also give her some variety.

We have been lucky to find lots of people with experience with DDH and they are very generous with their time and information. I’ve been in contact with another Hip Mum who hires out spica tables and yesterday, in the supermarket, a local Hip Mum introduced herself to Ashley after seeing Hazel in the cast. She has an 18month old who it seems to have had a very long period of treatment. Ash gave her our phone number and she kindly sent a photo of her little one and details to get in contact. It is so nice to feel a sense of community and support when you are dealing with such a big change in your life.

 

On the mend

Hazel has had a great day. Sleeping overnight is naturally a difficulty and it was a bit like having a newborn again as we got up every few hours to an unsettled little girl. For the most part, she was easy to settle back to sleep although I got up with her at about 5am and sat with her in our lounge until she settled. She went back to sleep until around 8am and has been a bright little sunshine for most of the day.

We haven’t done much with her other than watch ABC kids and play a bit of peek-a-boo and catch but I’m hoping the weather will improve soon and we’ll be able to get her out and about enjoying the fresh air.

Linus will be back with us tomorrow. My parents have very generously taken care of him since Thursday which has made everything so much easier for us, and of course has been great fun for Linus who loves nothing more than going to grandma and papa’s house. It has been a long time away from the little man though and Ash and I are both looking forward to having him home.

Coming home

It has been 2 days now since Hazel’s surgery and of course it is amazing how well she is doing. We have continued to fight somewhat with the nurses about her care. They are nice enough but their priorities and ours are at odds. We wish her to get plenty of pain medication, before pain sets in and they want to give only what is needed, in response to pain. I’m pleased to say that in the end, the acceded to our wishes and gave her additional pain medication, despite clearly feeling it was unwarranted.

I can understand their point of view, that Hazel’s distress is caused more because of her situation than because of actual pain, but as a parent I’m not willing to take the risk that it is actually pain (and who wouldn’t be in pain after such surgery?) and would prefer we err on the side of medication, where those medications can be given safely. I’m sure every parent feel the same, but I also like to think I know my 18 month old well enough to tell if she is frustrated or if she is in pain.

In any event, when Mr Natrass turned up, he told me she was having too much pain medication and that she wouldn’t be in any pain because the only reason we have pain after surgery is because of movement, which she can’t do in the cast. I told him as a veteran of 3 surgeries (2 c-sections and a gall bladder removal) in the past 4 years, I strongly disagree with the statement that there was no pain if I didn’t move. He told me that 20 years of experience disagreed!

None of which really matters because we are now home and her pain medication is solely my concern and I am able to err on the side of a little more relief. We have panadol and nurofen and also a children’s version of panadeine and I’m confident we can keep her pain free with these 3 medications.

We brought her home in the car seat with the extension clip and a few jumpers stuffed in behind her to fill the gap between the seat and her cast. She was very happy in the car as this was her first time forward facing! She has a lovely long nap in her cot when we got home (and mum and dad caught a few zzz as well!) and has since been up watching ABC kids happily.

She is clearly beginning to be frustrated by the cast. She asks to be put down and wants to move around independently but I’m sure that in another week she will have it all worked out.

The hospital stay has been incredibly draining emotionally as a parent, far more so than I had expected. The hardest has been having to rely on other people to provide care for your child, having to wait 10 or 15 minutes for the nurses to come, having to make your case for this care or that care, so I think having her home will be so much better.

There is no doubt that the worst is behind us. Mr Natrass said that the scan showed her hip was still in place in the cast and he was very pleased with the results of the osteotomy. We will shop tomorrow for a bean bag and I have details of someone who makes tables for kids in a spica. I think by this time next week she will be completely her old self and in six short weeks she will be cast free and learning to walk for the second time.

Thanks to everyone we know who has sent their well wishes and thoughts. They mean a great deal to me.