Hip Dysplaysia Support Group

[Alexandra's Mum]

Thank you Minimatron and Hailey's mum for your replies. It helps so much to know that others understand.
Hailey's mum, your comments about your DD have helped me to believe that she wont be left behind. My DD is crawling backwards at the moment, although in the short time she had the DB Bar on and did not do any standing she has completely forgotten about it and cannot do it. I do hope she also develops and crawls/stands etc even id she is in the plaster for a while.
I am assuming you are visiting the RHC, have they indicated how long you will be in plaster for and then how long in a brace? It sounds like such a long process for everyone in this position regardless of whether it is a brace alone or plaster and brace.
It is great to know that I can vent and discuss this on here, as my husband does not like to talk about it at all and prefers not to know anything until the doctors tell us about it.
When DD is in plaster (Spica) do they fit in prams and cars eats? today i wanted to buy DD one of those walker toys (that don't move though) with the table in front of them to play etc.. but I am unsure as to whether she will be able to fit in it or even sit in it? Any sugestions with these sort of toys? Look forward to hearing back, thanks so much.

[Haileys Mum]

Hi There,

We have a surgeon from the RCH called Leo Donnan. He has been fabulous with Hailey. They are in the the hip spica following surgery for six weeks at a time. Hailey only had plaster for 6 weeks. Believe it not, that time will actually go really quickly. The time after the plaster in a brace is completly dependant on how quickly/slowly the hip joint grows while they're in plaster. usually 6 months to 18 months. Due to complications hailey only had the brace (rhino cruiser) on for 6 weeks. She now sleeps in it only. In the 5 weeks she's had it off, she has learnt to go from dragging hrself, to sort of crawling, to crawling properly and now standing on her own- easily and quickly.

We have Beema Q 3 wheeler pram and Hailey fitted in it no problem, as for the car sear you have to buy an extension stap from the RCH ($15) for you existing car seat and the nurses pad the seat to fit your daughter. You not be discharged from hospital until she is in a safe car seat.

As for the walker, definatly not. It's hard to imagine and I don;t know how to post any photo's of Hailey in plaster for you to see but their legs are very wide apart in plaster and so she won't fit in a walker. Even in the rhino cruiser, after the plaster, she probably won't fit.

The hardest thing I found was shopping. No way can they fit in a trolly. So i'd carry hailey in, drag a trolly, go staring to the coke isle and get a box of coke cans for her to sit over, in the trolley- worked beautifully! We fed her in the pram, or sitting on someone's lap, they won't fit in any high chair. But after plaster, get a "Dinky Diner" about $15 on ebay. Attatches to a chair and you tie them in. Awesome.

Hailey spent a fair bit of time propped up on cushions, sitting on our laps, sitting over (tied into) small chairs and dragging herself aroun. Pretty boring for them so it's toys that she can use herself while sitting still that work the best- such as books.

Hope this helps a bit. Please ask anything you like, I remenber how horrible it was before Hailey's surgery-just not knowing what was going to happen and what to expect.

Warm regards,

[Alexandra's Mum]

Hi
Thanks so much for your tips. I loved the coke idea in the trolley, made me smile and bought a tear on at the same time.
Will wait for our appointment to see Othop surgeon and take it from there. Int he meantime have bought her christening forward to the 19th July, so a bit hectic at the moment.
Will be sure to be back soon once i have some more news. Thanks for being so helpful.
Please keep us updated on Hailey also.
Connie

[LauraK]

Hi all, so sorry we haven't been on here for a while, I'm now back to work and feel like there aren't enough hours in the day so don't always get a chance to come on here as often as I'd like to. We are back to the hospital for an x ray tomorrow and we are dreading it to be honest. Things didn't look great last time. Harrison is starting to want to be on his feet more and more now and we are worried this is doing his hip more damage - it's really difficult as he is happy when he is on his feet and as everyone else has said it's always a worry that he wont develop as 'normal' baies do and so we don't want to stop him from standing. He is still wearing the brace at night and he is absolutley fine with this, our worry now is that he will need surgery. Hearing everyone elses stories about their babies surgery is so reassuring as they seem to deal amazingly with things.

Alexandras mum - we all sypathise with you and have an idea of what you are going through. This forum is so helpful and when Harrison was first diagnosed it was so comforting for us so read other peoples stories as we were not aware of anyone else in our area that were in a similar situation. Even 7 months down the line we still find this forum to be an amazing support. It's great to be able to share stories and tips to help us all get through the hard times that we have ahead.

We will let you all know how we get on tomorrow, take care everyone xx

[bridee]

Good luck Laura hope you get good results from the x-ray. Our specialist has always said never force DD legs/hips into a position but if she naturally does it then it is ok so if Harrison is wanting to stand, our specialist would say it is ok. But I totally understand your worry.

Georgie has her x-ray next week I just wish it would come to get it out of the way and we know where we are at.

[LauraK]

Hi all,

Bad news yesterday. Harrison needs to have surgery then go into a cast for 3 months. We always tried to expect the worst but we are absolutely devestated that it has come to this. The consultant said that his hip has not improved at all in the last 3 months and so we need to move on to the next stage of treatment. We have now been referred to another hospital so we are just waiting for news of an appointment with the new consultant. Since we found out I feel like I can't think of anything else, we are so worried about the actual operation and then how he is going to react to waking up with the cast on and of course how our poor little boy will deal with the weeks in the cast. Also he loves bath time and it is absolutley heart breaking to think that he wont be able to have a bath for 3 whole months. I'm now back to work so I'm starting to get worried about how much time off I will need, I just want to be with Harrison all the time but I know that this wont be possible - I'm just in a bit of a state at the minute I think!

Anyway, just wanted to update you all, sorry for ranting, hope everyone else is ok xxxx

[nicoli]

Laura - I am so sorry to hear your bad new about Harrison. I am crying just reading it. I am feeling the exact same way as you felt before your xray and Scarlett is in her brace at night only as well. I have also gone back to work recently and feel that I never get to spend enough time with Scarlett.

I know you know this, but everything will work out fine. At the moment I'm sure you are just thinking 'why me'? as I'm sure we have all felt. All you want is for Harrison to be healthy, happy and 'normal'. Scarlett is also standing up all the time and she is so delighted with herself that I just can't imagine how she would cope if that were taken away from her. Probably better than me!

Good luck with everything - hopefully Harrison will have his surgery quickly so you can get on with things. Just remember that we are all thinking about you both.

Connie - I am glad you have found some comfort through this forum. I know I would not have come this far without it. Good luck with Alexandra's surgery as well.