Hip Dysplaysia Support Group #2

Jess - GL for Lahni's appt, will be thinking of you and I hope the brace comes off tomorrow - I understand about not wanting to get your hopes up, I think its a bit of a defense mechanism in case you have to go a bit longer with the brace, either way sending good luck your way

Corelly - Thats a great idea re the bath, I have only had one bath with Bailey (we filled up our spa in the ensuite and he had a ball) so I think I might do that again, thanks for the idea, I am going to do it tonight!! I am much better about everything, thanks for asking. My SILs mum was asking me about the brace at christmas and for the first time I was able to tell Bailey's story without tears, so thats a step forward I think :)

Hope all the other parents and bubs are doing well, Our next appt with the ortho surgeon is on the 14th, but there is no chance of the brace coming off, its just a checkup so see how things are progressing

Naomi

well we had her ultrasound today and saw her doctor and he wants to keep her in the brace for another 6 weeks as her left hip still isn't the best, but its not bad.
he was actually tossing up whether just to take her outta the brace all together, but thought its best for her to be in it for a little bit longer.
im just annoyed cos she was only ment to be in the brace for 12 weeks max... now shes gunna be in it for 19-20 weeks!! not how i pictured her the first few months of her life but hey its the best thing for her hey.

Sorry to hear you have another 6 weeks to go Jess, bummer mate!! I look forward to seeing that post in 6 weeks time when you get to bring Lahni home brace free :hug:

Hi Everyone,

It feels like it's been ages since I've been on here. Christmas was really busy for us and Chloe has been SUPER clingy latley which has been exhausting me. Her sleep hasn't been the greatest, she has had a very bad cold and is now frustrated that she can only crawl backwards and not forwards in her brace. This is exasperating the normal seperation anxiety phase although I think I am begining to see the light at the end of the tunnel. DH is on holidays this week and has been trying to hold her at times, today, for the first time in a week she didn't scream for me when he was holding her which was a huge relief. We also took the kids to the pool today and my little water bub loved it she kicked like anything.

Jesska - so sorry to hear that your LO is still in the brace. That really sucks! I know what you mean about not getting your hopes us. We go back to the RCH for scans, apts etc on the 19th of Jan and at my last orthotics apt my orthotist mentioned that they might just reduce the brace down to naps and night sleeps. Now I can't help hoping that this will happen and am worried that I will be really disapointed if it doesn't. My clinician did originally say that she would be in the brace aprox. 4-6 months so i really shouldn't be expecting anything to change so quickly.

MummyNaomi - great to hear you are feeling better about things. We all have our moments as mums and this brace just makes me have those moments more often, as it complicates an already MASSIVE job.

Anyway better be off and get some sleep while i can.

Hugs to everyone.

Hi all,

Wiggs - my DD is experiencing separation anxiety too - but only at night. She won't settle until I'm holding her again, and she grabs my face, ears and hair to convince herself I'm still there. Aaaahhhhh to get some sleep!!! Hope it eases for you soon.

I've been thinking about my last appointment with the surgeon and he gave me some measurements, saying DD's hip was at 31. Can anyone tell me what that means and what measurement is a good one?

Cheers!

Corelly - if he meant 31 degrees (eg the acetabular angle), then I think thats pretty good, I know our ortho said they only tend to brace babies if the angles are over 30 degree's (assuming the ball and socket are stable etc), so sounds like DD is getting very close to the normal ranges. Bailey was put in a brace as both his acetabular angles were over 30 degrees, his right hip is worse than the left, HTH

Naomi - Oh boy, I hope so!!!! It's so hard not to get hopes up though!

Thanks,

Corelly

Hi,

I am new to this forum. I have been reading bits for many months now whilst pregnant and in the early months but had found all the answers I needed from existing posts. However, I now have a specific issue that I wonder if anyone can help with.
My son was born at 36 weeks naturally and at the time his paed noticed a clicky left hip. An ultrasound indicated grade 2 dysplasia so we were referred to Westmead childrens when he was about 8 weeks old. On our second visit they put him in a DB brace (about 3 months old), for night and day time naps. He had gained the coverage of the joint but is was cartilidge and they wanted to help rest the joint so bone could form.
This has continued for over 3 months now and are next appointment is the end of February when he can also now have an x-ray.
Liam is now 6 1/2 months old and has taken to rolling onto his tummy, especially at night in his cot. He's fine for the first part of the night but in the early mornings he must wake up a bit and plays around. For a couple of weeks now, we've been going in when he cries to find him on his belly at the other end of the cot, sometimes with limbs stuck out the bars. He can roll in his harness from his back to front but then seems to get stuck and can't roll back. During the day without his harness, he isn't very good at rolling from his front to his back and doesn't do it very often.
Apart from disturbed sleep, its not been too bad. But last night, for the first time his movement monitor alarm went off. This hasn't happened before. I raced in and Liam was on his tummy, just breathing. I think the alarm noise had shocked him to breathe again.
We wrap his arms tight at night and pin him down with the sheet to help prevent him moving but clearly this doesn't work for the whole night. We also put rolled towelling nappies under his legs to support the brace and stop him moving, but he's a strong boy!
Has anyone experienced this problem of rolling in the harness in the cot and do you have any suggestions for managing it?
Thank you in advance

Oh Karen, that must have been very scary! I haven't experienced the same as Bailey hasn't worked out how to roll in his brace, but a though could be to rewrap him half way through the night - eg if it is taking him some time to gradually get out of the wrap and sheet, if you wrap him firmly again at say midnight would that 'secure' him again for a few more hours?

Thanks Naomi, we may try that. We also plan to swap cot ends as I wonder if he heads down the other end for a reason.
I was surprised when he managed to roll in the harness. I would have thought it too hard with his legs stuck out wide but its like now its a new trick and he keeps doing it.

Hi Karen

Mother's worst nightmare!!!! Have you tried a sleeping bag? SIDS and Kids recommends them and they're supposed to prevent kids from rolling over. The proper SIDS ones aren't cheap, but I've bought one before from Best and Less for a fraction of the price. There are summer and winter ones. Hope you find a solution!

Corelly

Hi Corelly,
Thanks. We had used sleeping bags before and so I did try one again last week during one of his day time naps. I was going in so many times to re-position him, so looking to try anything. The sleeping bag helped the first time. But then he worked out how to roll with it on (and the harness) and so we gave up. I might try again now though at night as its starting to get a bit cooler.
Karen

Bailey had his checkup with the ortho surgeon yesterday, nothing to report really, seemed like a waste of an appt to me, it was more making sure we are doing ok with the brace etc etc, but as we see the orthotist almost fortnightly for adjustments it seemed pointless (and a waste of money!!)
Anyway, Bailey has been in the brace for 7 weeks, still about 20 to go. We go back again on 4th March for an Xray so we should know how effective the brace is then, hopefully there is some obvious improvements in his acetabular angles from that xray

Corelly - I LOVE sleeping bags - we have some best and less sleeping bags too (lightweight ones for summer), they are nice and stretchy to accomodate the brace also. I have some grobags but they aren't as stretchy so I might have to find an alternative when the weather cools again - did you get winter weight ones from Best and Less can you recall?

Hope everyone else is well and their babies are doing great!!

Naomi

Hi everyone!

Mummy Naomi - Yes, I did get winter ones from Best and Less. They were really good too, beautiful and fleecy and they even had a slot in the crotch area so you could bundle bub up in the car and the straps could go through. Sooooo good! I've only seen the summer stock in their recently, so I guess the winter stuff will be coming out soon.

Karen - How did you go during the night?

I'm banging my head against a wall right now. :wall: We are soooo broke and the medical bills just keep piling in. I'm so over it. And health insurance is useless. From an $800 anethesist bill, they gave us $96!!!!!!!!!!! We only reached the Medicare safety net on Christmas Day, so we're back to square one now with that. GRRRRR!!!! I quit my job when DD was born, being able to live on my DH's income, but six weeks after she was born, he lost his job and the next job was a big pay cut. We've been scrimping along ever since. I really don't want to go back to work, especially with DD in the brace. We've postponed a QLD holiday already, and we had to get another car too because mine died. AARRRRGGGHHHHH. DH is going for a payrise today, fingers crossed. Anyway, that's my vent for this week :redface:

Roll on February, and lets hope the brace comes off!

Corelly

Hi Corelly,
We had one of our worst nights since we ditched his dummy a few months ago. I think he flipped onto his tummy at the end of nearly every sleep cycle so I was turning him onto his back every 45-90 mins or so. In the end, I left him a few times on his tummy because he was well positioned with his face to one side and had fallen asleep but then he couldn't re-settle himself in that position. Hopefully tonight he'll be as exhausted as me and sleep well.
Will be checking out best and less for their sleeping bags I think, especially as winter comes. thanks for the help guys
Karen

Corelly - doesn't it make you wonder why you bother with health insurance? Thats outrageous that you only got $96 back, I'd be fuming too! Do you have to go back to work at some point? I have to return in March, but DH is taking long service leave so will be off with Bailey full time until July which is awesome as he should be brace free in May or June and I really dont want him to be in child care in a brace. Hope your DH got his payrise mate

I so need to find those sleeping bags - what a great idea re the seatbelt slit!!

Hi everyone else - hoping your beautiful bubs are doing well! Bailey is getting himself into the crawling position, trying to move forward, then slumping on the ground with frustration then crying out for help. Its kinda heartbreaking yet encouraging at the same time. I feel his frustration at the brace but think, hey, if you have worked out how to get yourself into a crawling position, you are one step closer to finding a way to move about. I'm not sure that he has enough arm strength to commando crawl currently.

Naomi

Karen - Hugs to you. Hope you can get some rest soon and I've got my fingers crossed that Best and Less hurry up with their sleeping bags! I'd send you mine, but Liam's probably too big for them!

Naomi - That's great that your husband can take long service to look after Bailey. Must be an absolute load off your mind! Good on Bailey for trying to crawl! DD has figured out how to lift her tummy up off the ground and then she pushes herself backwards. They'll both be off and running as soon as these braces come off! DH told his company what he was after and they wanted the weekend to think about it, so hopefully we'll know tonight. If he gets what he's asking for, it'll mean almost $200 extra a week and we can start to breathe again! My old work keep asking me to come back, but the pay is crap and so not worth it. Before, I enjoyed the job and we weren't stressed about the pay, but now, that's the only reason I'd go back, but I don't see any point in going back there, because it won't actually help us financially. We made the decision before DD was born that I'd be a stay at home mum and I'm hoping that these medical bills stop soon so we can stick to our plan! Just gotta keep thinking positive, right? THE BRACE WILL COME OFF IN FEB, THE BRACE WILL COME OFF IN FEB. LOL!!

And DD is progressing well. She makes us laugh daily and she is just a happy happy baby. Last night we went out to a friends house, and we were there till about midnight, and DD just watched everyone, chatted, giggled and then fell asleep amongst the loud sounds of gutair hero!! There were quite a few people there that I hadn't met before, and everyone just kept commenting on how good she is, and I do really feel blessed, brace or no brace. And thinking about that senseless car accident, where five teenagers died, just a few minutes away from my house, makes me again know how special she is and that in a few years this hip dysplasia journey will be a mere dot. Well, that's what I'm telling myself today, anyway!

Getting a big maudalin here, so going to stop!!!

Hugs to all mums and bubs and dads too :)

Corelly

:dance:


Well yesterday we went for our 6 week check up and x-ray. The x-ray showed that Chloes actebelar angle has improved to a bout 24 degrees on both hips and that her hips are still in their sockets. This means that we can now significantly reduce her hours in the brace. We go back for another x-ray in 8 weeks but until then Chloe has 8 hours brace free for 6 weeks (which means she only wears it for naps and night time sleep) and then 2 weeks of 12 hours brace free so that we can get an idea of how her hips are going on their own before her next x-ray, I can't tell you how excited I am about all this. I felt like shouting for joy in the hospital but remembered that their are a lot of sicker kids their and probably pretty sad parents so I didn't want to be too happy if you know what I mean. I think I am most excited about this because it means she will finally be able to crawl forward. She gets up on both knees and rocks back and forwards she is able to go backwards but hopefully without the brace she will regain some strength in her legs and be able to go forwards.

Anyway, sorry about the super selfish post. I hope everyone else is going OK and that you guys also get some good news soon.

Thats awesome news Wiggs - so glad to hear it, that must be making life easier!!

Bailey doesn't have an xray until March 4 - he will have been in the brace for about 14 weeks at that point - did they xray Chloe in the brace or out of it to check her angles?

Fantastic, Wiggs!! So excited for you!:clap:

Corelly

Thanks Correly and MummyNaomi

I can't believe how much happier she is. I thought she was a pretty happy baby with the brace on but that is just nothing compared to life without it. She taught herself to go from being on her tummy to sitting up within 1 hour of being brace free. She is also a lot less clingy which is a huge relief. Sleeping is still SHOCKING but I know it's because she is uncomfortable and I will put up with that if it means she has brace free days.

Hope you both get some good news soon.
Brace was off for x-ray and I had to hold both her legs straight down which was a little weird as I had been told NEVER to do that.

Lahni rolled over from back to tummy tonight!!
I am soooo proud of her!!!!
Doc said she may not roll until she is outta the brace, but my lil girl rolled. :D
Sooo happy and so proud.
Sorry having a mummy moment!! hehehe

That is AWESOME Jess - how clever is little Lahni - congrats, I bet that bought a tear to your eye :)

oh yes DH and I nearly cried, we were so proud of her.
then when she did roll she looked so proud of herself, big smile from ear to ear.
she is so adorable, i still cant believe she rolled!!!! :)

oh yes DH and I nearly cried, we were so proud of her.
then when she did roll she looked so proud of herself, big smile from ear to ear.
she is so adorable, i still cant believe she rolled!!!! :)

opps double post sorry girls!!

Go Lahni!!!! Well done Jess! You absolutely deserve to be shouting out with your mummy moment! Pretty soon she'll be rolling all over the place!


One week until we find out if DD has progressed enough to come out of the brace. I hate the waiting. I get so anxious on the days leading up to it, my hope is just skyrocketing. Surely, surely its time?!!! This all started for us when DD was seven weeks old and she was 10 months old this week. :pray:

Keep you all posted and hope everyone is well.

Corelly

Hi everybody,

It has been a while since I last posted but I do drop in to see how you all are going. DD2 has now been out of her harness for just short of two months. She started rolling a couple of days after she was 'released' and is now commando crawling around the house and getting into all sorts of trouble.

We had our six month innoculations and development check today. DD2 is a little bit behind in that she is not sitting yet but I think that is partly because of the brace. Everything else is looking pretty good so the nurse is not worried yet.

Corelly, best of luck for your upcoming appointment. Fingers crossed for you!:goodluck: The wait before appointments is hard. We go back to our Dr in a month and it is already looming at the back of my mind like a dark cloud.

Hoping that everyone and their bubs are well.

Crosswig

I'm having my moment now to shout from the rooftops!! DD commando crawled from her bedroom door to the other side of the room in the brace!!!!! I am just so proud of her determination - she was as pleased with herself as you can imagine, once she got to where she wanted to be, she rolled on her back and waved her arms around grinning. For every billion days of this horrid brace, one of these special moments just erases all the bad stuff. She's my little champion.

It's been a really crummy week with other things going on so this is just a perfect moment and I needed to share. Thanks everyone.

Thanks Crosswig for the crossing of fingers for us on Friday. Here's hoping some good luck rubs off on us and the commando crawl is just the beginning of some awesomeness!!

Corelly :dance:

Hi everyone, can I join this group? Am not really sure how it all works!

My youngest daughter was diagnosed with hip dysplasia last week at 8.5 months. She has been really well and crawling for several weeks now. No-one picked up on anything and it was a last minute decision that the GP ordered an xray.

Met with the orthopaedic surgeon yesterday and she has to have a small procedure next week under a GA and then wear a rhino cruiser brace for at least 6 months.

Has anyone else's bub worn this brace? I really don't know much about it all and what to expect so we feel quite nervous.

You all sound like such caring and knowledgeable mums!

Corelly - AWESOME, AWESOME News!! I am soooooo happy for you guys, that would have been one special moment!! I cant wait for Bailey to do that!!

Smarti - welcome. My DS wears a denis brown brace but I have seen the Rhino - hopefully someone will pop in who has experienced it. Its very tough at first when the bubs are diagnosed, hopefully we can be of some support to you through this tough time, if you have any questions or just need to have a vent or a cry (or celebrate like Corelly), pop in at any time so we can help :)

Thanks Naomi, it was just so good to see. It'll be Bailey's turn next, just wait for it!!!!

Smarti - Welcome to the group. I find the advice here so invaluable and I wouldn't have managed this journey without the wonderful people here. My DD is in the rhino cruiser brace, has been since August. The brace is worn outside her clothes. Things like jeans are uncomfortable for her, shorts are a no go zone. I make sure that she always has either a singlet or a jumpsuit on, so the belly strap doesn't rub on her skin. We also put a baby cot pillow under her legs at night and this seems to make her more comfortable. Overall, it doesn't seem to bother her at all. If your baby can crawl, she'll be able to in the brace, so I'm told. DD can't fit into her highchair unless we remove it, but our pram and car seat were fine. You might need to get an extension strap for the car seat though - you can get it from the RCH's equipment distribution centre. It's the strap that comes up between their legs - needs to be longer to accomodate the brace. There isn't a lot that DD can't do in it, other than crawl on all fours, only because she didn't know how to before she went into it. But the BEST bit that I've found is that we haven't had one leaky nappy since it went on!!!!!! It will be a challenge at first, it is impossible to keep clean, but stay chatting in this group and you'll find a way. Hope that helps.

Corelly

Thanks Naomi and Corelly for the warm welcomes!

Some good tips too thank you Corelly. In this hot weather, is a singlet suit going to be OK on its own? Or will we need to put something like leggings on as well? I guess the cooler weather will be easier with a onsie and pair of tights!

Do you think she will be able to still fit in her sleeping bag for night time? I hope so!

I will get one of those extension straps for the car seat too. We have a McLaren stroller and a Phil & Ted's pram. I use both, depending on whether I need to keep Miss 3 from roaming about while we are out! Hopefully our prams will be OK, will just have to wait and see I guess.

Yes, Phoebe has been crawling for a while now and is already trying to stand up. She's very speedy with the crawling and likes to climb over pillows and any other obstacle in her way, so after some adjusting to the brace, maybe she will still be able to get about. She will be very cranky otherwise I am sure!

I can't believe how long some bubs seem to be having to wear these braces! I was shocked when the surgeon said 'at least' 6 months. Hopefully it won't be any longer than that. But I guess we'll just have to go with it and wait and see.

Am nervous about how she will sleep (or not!). Has been a good sleeper but am sure this will make her cross!

Thanks again girls.

Smarti

Hi Smarti - DD had no problem in her sleeping bags during the cooler nights, but you'll find that now it's warm, your daughter will get incredibly hot so it might be something you want to do away with. Unfortunately, you need to have leggings on her all the time - the leg straps that go over her thighs need to be off the skin. We manage with 3/4 pants. The last couple of nights ahave been rough because its been so warm, but we make sure we give DD a long coolish bath before bed so she's not too uncomfortable. Hope this helps!

Tomorrow is D-Day for us and I'm so nervous. I've had a really crummy few weeks and the bad thing for me is that I'm hanging so tight onto the fact that tomorrow the brace just HAS to come off, that I know I'm going to come crashing down badly if it doesn't. We're going to Queensland in three weeks, and we've already postponed it once, thinking if we go in March, surely all this will be all over and we can play on the beach and in the pool. I'm dreading the brace not coming off. It just has to come off!!!!!!!!!!!

Corelly

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Tomorrow is D-Day for us and I'm so nervous. I've had a really crummy few weeks and the bad thing for me is that I'm hanging so tight onto the fact that tomorrow the brace just HAS to come off, that I know I'm going to come crashing down badly if it doesn't. We're going to Queensland in three weeks, and we've already postponed it once, thinking if we go in March, surely all this will be all over and we can play on the beach and in the pool. I'm dreading the brace not coming off. It just has to come off!!!!!!!!!!!

Corelly

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I have absolutely EVERYTHING crossed for you guys for tomorrow!!

Corelly, you are a font of information! Thank you! Right, I'm off to Target this week to get some leggings.

Good luck with your appointment today, fingers crossed for you.

Smarti

:D

Well we got the news today that we've been waiting for!!

DD is now brace free all day, and only has to sleep in it for the next three weeks and then it's gone forever!!!!!!!!!!!! And yes, I cried in the surgeon's office!

We had one of those xrays where I had to pull DDs legs straight and it showed that her hip angles are finally right. There is still a little bit of bone growth to be done inside the hip - not sure what it is because it only shows up as a little dot on the xray - but this is grown without the assistance of the brace. Our surgeon said that DD was in the worst 10% category so we need to have checks right up until she's 14, so I hope he doesn't plan to retire anytime soon, but otherwise, right now we are unrestricted on activities and to crack open a bottle of champagne! What a shame I'm still breastfeeding!!!!

I am so thankful to the people in this group that have been so supportive when I've been low and so happy for me when I've been high. Naomi, you have been particularly supportive and I thank you from the bottom of my heart and I know that Bailey will be right really soon.

With lots of hugs to you all

Corelly :hooray:

Oh! I forgot too, for everyone that I've been talking to about the sleeping bags, I saw them back in stock in Best and Less at my local Westfield!

Corelly

Corelly,

That is great news :clap: you must be over the moon. I was really hoping that today would be your day and I'm so happy for you.

I hope that you enjoy the next couple of days and all of the things you've been missing out on.

Crosswig

Corelly - I am so VERY happy to hear this news, so just a few more weeks of the brace at night (easy peasy!!) and this journey will finally come to and end for you and DD. What a great day. I am no longer BF so I am having a wine in your honour to celebrate. Before you know it the commando crawling will be regular crawling and you will be running after her (no doubt with the biggest smile on your face!). I would have cried in the surgeons office too! Congrats!! Congrats!! I know I dont know you IRL but after sharing your journey and your support of us, this really has made my day! Any time a DDH baby is 'free' from a brace is a bloody good day!

Naomi
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