Hip Dysplaysia Support Group

[LauraK]

Hi all

We've just come home from the hospital - really good news. We actually managed to see the consultant and he is very happy with Harrys hips and said that Harry only needs to wear his brace at night. We need to go back to the hospital in 4 weeks time for an x ray and hopefully Harry may be able to be brace free once we have the results of the x ray! Again, we are not building our hopes up for the next appointment but are really happy with the outcome of todays appointment.

Hope everyone is doing ok xxx

[minimatron]

Congrats Laura, hope you have a fun time exploring with Harry being harness free.

Good luck with your next appointment

[Haileys Mum]

Hi all,

Sorry it's taken me so long to write on here but it's been a long two weeks. Hailey had her surgery two weeks ago now, she's in a hip spica now and coping pretty well. The heat is knocking her about a bit, she hasn't worn clothes for several days! We spend alot of time walking in the pram and alternating positions for her, I think we are coping pretty well considering!

I hope you are all well.

[Rachelle]

Hi Everyone,

It's been quite some time since I've posted and I wanted to check in to see how everyone is doing.

Taylor is doing great. She will actually be two years old tomorrow. She came out of her spica cast (after 3 months time) on Jan. 2nd and straight into a hip abduction brace. After four days in her brace she started crawling and rolling over. After day 6 she started sitting up unassisted and about one month out of her cast (the beginning of February) she started walking again. I suppose it helped that she had done all of this prior to her surgery and casting but I thought that it would take her more time than it did to re-gain the strength. She proved me wrong! She can be out of her brace for only 1 hour max. per day but I love being able to take it off for baths and diaper changes and I have been taking her swimming every week which she loves! I thought it would be good exercise for her left hip which is still pretty stiff and won't abduct out completely. She walks with a limp and drags her leg which makes her lose her balance but hopefully that will improve over time.

On March 31st, we go back to see the orthopedic surgeon and I can say with some confidence, that she will get to come out of her brace completely during the day and only have to wear it during the night when she is sleeping. I am so excited and can hardly wait. I am going back to nursing school (which I was doing pre-diagnosis) on April 9th and it will be great that she can go to daycare and play in the sandbox and with the other kids without her brace on. We will go to see the surgeon every few months for x-rays and check ups and should know by the time she is 3 years old (1 year from now) if she'll need another surgery. I am hoping and praying for the best though!

Anyway, that's it for us. I can't believe she will be two tomorrow. I hope everyone is well and would love to hear from you!

Rachelle

[LauraK]

Hi everyone.

Just a quick update on Harrison now that he is brace free during the day. Within a few days of having the brace off he managed to roll onto his front and although he hasn't done it again at least we know he can actually do it! Things are so much easier without the brace and it doesn't seem to bother him too much having the brace on at bed time. He has never slepped through the night so I really hope that if he does get the brace off at night then we can aim towards him sleeping all the way through! At the minute he sometimes wakes when he is trying to move his legs and he gets quite upset so we end up feeding him to try and settle him and get him back off to sleep. We are back to the hospital in 2 weeks to have an x ray and hopefully we should have some good news - we'll just have to wait and see. I'll let you all know how we get on. Hope everyone else is all ok.

Love Laura.

[KylieCL]

Hello All!!

Gee, its been such a long long time since i have been here, partly because our hip journey seems to be in another life. Although not once have you guys slipped from the back of my mind!

Zali is going top guns now, she crawled at 8 months and now at 11 months old is taking the odd step. Very amazing considering the drama of her early life conserning her hips.

Well we are going back to the specialist at the start of May. Getting that letter confirming her appointment brang back a lot of familiar feelings- uncertainty, fear, hope... i have EVERYTHING crossed for her- i am so scared of her needing furthur treatment! its certaintly not something i want to have to live through again!

Ok well i must get going! I promise i will pop back in here more often!

take care xx

[Haileys Mum]

Hi Pip,

Hailey was in hospital for 2 nights. Like I said the first night was pretty rough. The gave Hailey plenty of stuff for pain and for the muscle spasms they have. The next day we took her for a walk in the pram in the gardens outside our hospital- that night was pretty ok- just panadol for pain. We then went half way home the next day, after they knocked her out again for the mri, stayed the night in a motel and finished the trip the next day. We are 4 hours away from the hospital and this worried me to start with but we have not had any problems at all so it is fine. Since we left on day three Hailey has not had anything for pain. She has not had any pain, back to her normal happy self. You will have to be careful of the small incision Lucy will have on her bikini line but apart from that she won't be uncomfortable. We took Hailey's fav teddies and toys with us to hospital and lots of love and hugs. You will need lots of this too!
The hole they cut out will be lined with some scecial waterproof tape that will help keep the cast dry. Hailey is a hot baby and so we have only put socks and shoes and skirts and tops on her. A few dresses. Lucy's normal sized tee's and long sleved tee's will still fit. Hailey was 9.5kg when she went into the cast and a size 3 skirt or dress fits her well now. Pants are just too hard as you need to get the waist band over her feet which will be FAR apart!!!
Hailey layed in a bean bag at the start but once she got moblie she scoots around the floor on her tummy most of the day now. Sits in her pram for meals or on Dad's knee facing me.
We have tried lots of sleeping things, at present she has a piece of eggshell foam under her shoulders and head and a foam wedge under one leg that we move a couple of times over night to avoid pressure in one spot for too long.
I was really worried about giving her to the anaesthtist. So about half an hour before i was expecting her to go I asked for a warm bunny rug, wrapped her up and got her to sleep. The when I took her to theatre she was asleep and they put the gas mask on her as so she just stayed asleep. It was not nearly as bad as I expected. Hailey was pretty sleepy for a fair while after the surgery.
I hope this has covered most of your questions!

[Isabella's mum]

I am new to this forum and would like some help. Isabella is almost 6 months old and has previously been in a DB brace for 10 weeks, this didn't work so she has just had a closed reduction and is in a Hip Spica for 8 weeks. Really tough time for us but she is wonderful and her happy self again after only 3 days. Really would love some suggestions and help about suitable prams. We have a Phil & Teds Vibe but can't seem to fit her in or work out how to. Can anyone suggest a pram that will fit her in a Hip Spica. I realise every baby will be different but would love to hear how everyone else worked out the pram situation.

[nicoli]

Hi Isabella's mum. I hope you are coping as well as Isabella is - it is much harder on us parents! My daughter Scarlett hasn't been in a spica (yet) but we had trouble fitting her in the pram and car seat in her pavlik harness. We ended up folding up towels and putting them under her bum so she was lifted up out of the pram. She was effectively sittining on top of the pram instead of in it! As long as you can reach the straps of the safety harness arounf it it should be OK. I'm sure others on here will be ab;e to give you some better advice about this.

So when was Isabella diagnosed? Just after 3 months? That is the age my daughter was diagnosed and she went into a pavlik harness before going into a DB brace. Both have done the job of forming her hip socket (she never had dislocation), but our doc is still concerend that the angle that her hip sits in the socket is not right. 3 more months until we see him again so we don't know what is happening until then, but we've been told she will probably need surgery before she goes to school.

Nicole