From spica to sprinter.. an update on Hazel.

Just recently I happened upon a poster at school advertising running classes for children and I immediately thought of Hazel. Whether it is up and down the corridor of her dance school, from aisle to aisle in the supermarket or simply up and down our street, these days if she is moving, she is running. It is such a thrill to watch young children take such delight in simple movement but when you know that, but for the wonders of modern medicine, she quite possibly wouldn’t even be able to walk, it is even more special.

Hazie recently turned 5 years old and I am amazed as how far she has come. When she was around 12 months of age, I began to be suspiscious that her legs seemed to be uneven. An x-ray showed clearly, even to my untrained eye, an absence of any decent hip socket and a dislocated leg wandering off and well away from home. With her late diagnosis, a brace was not possible and so we went straight to salter osteotomy with 6 weeks in a spica. I won’t lie, short of my husband leaving, it was by far the most emotionally trying period of my life and yet it seems such a long time ago, the memories are blurred and softened by time so that I honestly struggle to remember the pain that at one time overwhelmed me.

Unlike many hip babies, Hazel never went into a brace following surgery and I must admit, after the overkill of the spica, it was hard not to feel like she was just going to be flopping about like a fish out of water without any form of support, but we have had nothing but wonderful progress. According to her surgeon at our last check up, the affected leg now seems to be growing slightly faster but nothing to worry about as yet.She may need to have something put onto the growth plate to even things up if it becomes an issue in the future but, for now, she runs, jumps, skips, dances, leaps and twirls her way through a normal childhood.

If you’re here because of your own DDH experience, I hope it will be as positive as my own. There is little that is harder for a parent than to see your child face this sort of challenge but it does get better and there is so much light at the end of the tunnel. Here is my little hip baby to prove it to you..

New memories of old times.

Linus and I had a huge day today. He’d been asking for a while to visit MSAC for a swim and I had had to put him off because, although I have gone there with both kids in the past, it is much easier to have a fun time with just one or the other when I’m there alone. Ash was home today and so we left him to hang out with Hazie and headed off. We then spent 3 hours on the waterslide, stopping only when they closed it down.

Hazie and Linus are a funny pair with regard to the things that give them pause versus the things the are willing to do. Hazie loves big animals, always happy to pat a dog or run around a petting zoo, whereas Linus would historically have none of it, and is now cautiously involved. Linus on the other hand, loves the miniature world of the garden and will happily handle snails, slaters, millipedes, cicadas and even spiders, which leaves Hazel cold. Hazie loves to socialise and, although she will be timid for about a minute in new situations, she warms to people quickly and is bold and friendly to all. Linus is much more reserved in new situations but he is a complete daredevil and thus far, the only think that limits the crazy rides he is willing to try at theme parks or water parks is the height restriction. I can’t tell you how nervous I was to watch him, 4 years old, on the pirate ship alone! He was the same on the waterslide today. First going down with Mum, then alone, then on his back, then on his front. Nothing would stop him.

It was an experience that reminded me of my youth. My grandparents moved to Queensland in their retirement and so we went there every September holidays and visited Sea World, Dreamworld and later, Wet n Wild and Movie World. They are some of my favourite memories of childhood and I was really excited today at the prospect of sharing that experience with Linus, (and Hazel in a few years). Mum and Dad are hosting a trip away to the Gold Coast for us and my brother’s family and, even though it is a year away, I’m already so excited.

Eventually I had to drag Linus away as it was past lunch and I was starving. We went to Chadstone, got lunch and then decided to see what movies were on offer. Sadly there wasn’t much on offer for the young crowd but Linus was very keen to see the Smurfs. I’d avoided it as the tokenism of Smurfette has always disturbed me but I’ve got to confess, it was a sweet movie and Linus really loved it. We bought him some new shoes, as the skin on his toes had been worn off when he last wore his green pair and he had been asking for some ‘fancy ones’ like his sister. They are sketchers S lights which I’ll confess to have seen on other children around the traps and thought, “My Lord, they must get annoying” but the kids love them so much, and I figure there will plenty of time in their adult life for the wearing of sensible, non-sparkly, not light up shoes that I decided to buy them. We finished the shopping day with a quick trip to the bra shop, as I had been horrified to see my boobs around my ankles in my Inverloch photos and then headed home.

And had a completely flat tyre. I had taken Ashley’s new car because mine was parked outside the house and we needed to hold the space for a storage unit we had ordered, and I’ve buggered one of his wheels now! It is also the THIRD flat I’ve had to change this year after almost 20 years of driving without a single issue. It was dark and raining and not my car so I wasn’t about to change the tyre. Fortunately Ash had joined RACV and they arrived within about 15 minutes and got us sorted, while Linus made me stars out of blades of grass. It was a crazy end to a very long but fantastic day.

Inverloch

My parents have a have a holiday house in Inverloch, about 2 hours drive from Melbourne. They bought it as an old ‘beach shack’ and have slowly renovated and added to it over time. It is really wonderful to have something like a holiday house to visit wth the kids because toys can be left there and we really can just throw some clothes and bathers in a bag and get away for a last minute holiday. I had planned on going later in the school holidays but the 28 day rain forecast was all doom and gloom so I joined my Mum and Dad for a mid-week trip away.

On Wednesday we had the most glorious weather. It was not only sunny but the wind was also warm (which was not the case for the remaining days). It is amazing how much entertainment the kids find just by being on the beach.

They dug in the sand.

 

They looked for creatures and shells in the rockpools.

 

We did a bit of science. What made these footprints?

 

 

They drew pictures in the sand.

We also went on the Screw Creek Nature walk and found the most awesome climbing tree.

And on the way home, we visited Coal Creek Historical Village. It is similar to Sovereign Hill but run by volunteers and entry is free. I recommend paying the $6 for the train ride and buying a couple of 50c bags of feed for the ducks. The food at the cafe is simple but delicious and well priced.

The Melbourne Aquarium

I am on school holidays at the moment. Because I teach at an independent school, I get three glorious weeks instead of the government two. Initially I’d wanted to use the first week off, when public school children are still locked away in classrooms, to visit those popular Melbourne attractions which become bedlam once the school holidays proper begin. Unfortunately I also wanted to get away to our family holiday house at Inverloch and the long range forecast indicated that it was now or never if I wanted the sunshine. So I booked in for an end of week trip to the holiday house and joined my brother and nephew at the Melbourne aquarium.

It is a great place to take the children, but it is an expensive day out for a family. If you live near enough that multiple visits in a year are a possibility, I’d recommend the annual pass as a more cost effective option. The kids did love it though. The first exciting prospect was the tram ride to the city, with the aquarium appearing in the distance after an exciting bridge crossing (my kids love bridges).

 

The aquarium website announced that they had ‘double the penguins’ for the school holidays which I found highly amusing as an advertising concept.

 

   

I love this next photo. The kids have motion blur because of the low light (and my failure to change the ISO) but I really feel like it captures their sense of wonder.

 

 

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.

The confidence man

The reign of the supermum has come to an end. I’d been doing really well, but a nagging cough and the relentlessness of 24/7 with the kids and no adult company did catch up with me. That said, even though I’m not feeling like Carol Brady re-incarnated, skipping to the park and other wholesome activities to feed my children macro-biotic organic wheat cakes (only kidding, I would never make that shit), I haven’t done too bad. There has been a good degree of “Let’s watch ABC Kids!!” but there has been no hiding in the corner and only a small amount of sobbing. There has also been baking cookies and trips to the indoor wave pool, the beach, luna park and the zoo. Actually, when I type it all out like that, it does seem pretty awesome so maybe the reign continues?

Anyhoo, Linus has been an absolute champ these past few weeks. He is a wonderful, capable boy but his incredibly sensitive nature is not the ideal mix with a speech impediment. I remember the first day at the speech pathologist when she made a remark about how Linus was reluctant to say a particular word, because it would be difficult for him. I was (stupidly) surprised that he realised. We had NEVER made an issue of his speech issues and I guess I deluded myself into thinking that my bright sensitive chap just wouldn’t have noticed that he doesn’t speak as others do. Ha!

So Linus lacks confidence and it has been very very difficult to get him to try anything a second time if the first try was unsuccessful. It is heartbreaking in many ways, because you KNOW he can do it, if only he would try 2 or 3 times but he would shut down and because highly upset and agitated if pushed, so we have largely let him be, and gently encouraged as much as we dare.

The last few weeks have brought a change in our man however. As I mentioned in my previous post, he has made an amazing breakthrough with his language, and it is almost as if a light has come on, “Hey! I CAN do things”. He has been playing with the Leapster more, when initially he would not persist past initial favours and has been spending hours, trying and trying again. I should be horrified at the screen time but instead I am delighted at the persistence he is displaying. He is learning to ride a bike, after months of first refusing to get on, and later refusing any attempt at peddling. And today, we went to Luna park and he went on ride after scary ride, completely unaccompanied, bold and confident and delighted.

It has been hard to see him limited by his reservations and I don’t know where this new found confidence comes from; if it is the speech therapy, from having me home with him for weeks of undivided attention or if it is just that he is getting older and bolder. But I do know that it is a wonderful gift and I hope it lasts.

f..f..f….Fabulous!

I thought I might lose it today. I’m still a law firm widow and it is looking like that will be the case for this weekend and beyond as well, plus I’m getting a bit crook and the kids wouldn’t go to sleep last night. Linus in fact gave me a fright. He was in our bed as Hazel was unsettled in the kids room and I went in there to plug my iPod into the computer, prompting Linus, who also should have been asleep, to head out with a cheery retort of “I’ll be back Mum!”. I was only going to be setting my ipod to sync so I didn’t argue at the time but once that was all working, I headed to our lounge to herd Linus back to slumber.

Except he wasn’t there.

We only have a 2 bedroom house and I’d passed the kitchen and bathroom to get to the lounge so he could only be in the kids’ room, which I went to check.

And he wasn’t there either.

At this point I’m mildly concerned because there really just isn’t anywhere else in the house he can be. I wander back down the hall calling his name just as Ash comes in the front door and I explain that I seem to have lost our son. At that point the side door opens and our son comes in from outside. Why on earth he felt the need to go out, into the dark, and the rain, at 10 o’clock at night is beyond me, but mysteries of Linus are many and varied.

But as I was saying, I’m tired and crook and cranky. I tried to con Hazel into a nap around 11am but she was having none of it so I piled everyone in the car, and headed for Southland. I’m not usually one to view a shopping centre as the height of fun family times but it has been raining now for days on end and I needed to be Not At Home. The kids were great and we had some nice lunch after which my son uttered the most beautiful words…

“Mummy. I’m so full!”

Linus’ articulation issues mean that he inserts consonants in words beginning with f, s and sh, so before today this sentence would have been, “Mummy. I’m so dull” (as in rhyming with full but starting with a ‘d’ sound, not telling me he is dimwitted). Our work with Suzie Pinches had got us to the point where Linus was actually able to say f words correctly if we modelled for him but he was not generalising, i.e. he was not spontaneously saying his ‘f’ words correctly.

But today, as we stood in the shoe store, Linus asked me if he could tell me something and then proceeded to quite deliberately articulate the ‘f’ in ‘full’. It was honestly like the moment that Hazel walked again for me, if not more astounding and uplifting. Linus is such a sensitive, self conscious boy and he has worked so hard to master this skill that my heart just burst with pride and admiration. It has been like a switch turned on as well as we have had many beautiful ‘f’s since then.

He just amazes me.

One small step for man, One giant leap for Hazel

Hazel is walking!!

For most of the first 5 weeks after her spica removal, Hazel’s hip has been VERY stiff and she hasn’t moved it normally it at all. I didn’t think she would be walking within 3 months as there was no way that her leg would even touch the ground if she stood, which she didn’t. The last week to 10 days have brought enormous change however as she started standing with support, standing without support and then walking with support, all very rapidly. I was so surprised at how suddenly things were moving along but even more so these past two days when she apparently decided the shifting sands and unsettling waves of the beach would be a great place to learn to walk again.

And so here she is…

Notice how I’m so excited to film her first steps that it is D (Linus’ friend) who actually calls out to her not to go alone into the waves. Don’t worry, I did run down there and grab her in time.

The other amazing achievement was my survival of the two days away at all. I’m a reluctant mother and have honestly found the transition to motherhood indescribably difficult. My husband has been working all hours lately and to my excitement, instead of turning into a a blithering mess of despair once left home alone with the kids, I coped fine, dare I say I actually enjoyed it!

Inspired by my new ability to channel June Cleaver, I decided that taking my kids, and a friend for Linus to our holidays house at Inverloch by myself was a marvelous idea. Undeterred by the first parent who refused to hand over custody of their little one for the night, I turned to family friends who, like me, I knew would be thankful for a kid free night. So with 3 car seats shoe-horned in like sardines in the back seat, we made for the golden sands and blue waters.

And it was glorious. I got sunburned to buggery and then couldn’t sleep and trying to get two four year olds, a toddler who can’t toddler, towels, buckets, drinks, sunscreen and a sun shelter the size of the Taj Mahal down to the sand was no easy feat but a truly wonderful time was had by all. The beach was stunning and watching the kids enjoy it was one of those simple joys.

I may survive this motherhood gig yet, although looking at the current state of the house, I’d best not speak too soon.

 

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.