Hip Dysplaysia Support Group #2

[Miss.September]

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

[smarti]

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!

[MummyNaomi]

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

[Miss.September]

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

[smarti]

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

[Miss.September]

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

[MummyNaomi]

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

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

[smarti]

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

[Miss.September]

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

[Miss.September]

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

[crosswig]

Corelly,

That is great news 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

[MummyNaomi]

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
x

[Miss.September]

Thanks Crosswig and Naomi- I'm still beaming!!!

The changes in DD were immediate. She is the happiest baby. We got home and she played around for a while and then slept - for three hours. She was so comfortable at last that she just slept and slept. I'm lucky if she normally sleeps for 45 minutes during the day. Once the brace went on again for night, we were up and down like a yoyo all over again. She has learned how to go from sitting to on her belly. And she's trying to crawl. It'll all happen in a heap, and it's so exciting, but I think I'm always going to have that little flutter of fear in me that on one of the appointments, I'm going to be told that the brace has to go back on, or that she needs more surgery. Wish there was some guarantees in this. Anyway, enough about me.

Naomi - how's Bailey going?

Smarti - good luck with the GA procedure, if you haven't been through it already. Let us know how your DD is adjusting.

Today is remembering Black Saturday. I live really close to Kinglake and DH is a lieutenant in the CFA so it was pretty traumatic for us. But I look at DD and I am so thankful that we're here, we have our family and our home and wonderful people in our lives. Give all your bubs a big hug today and feel blessed that they are smiling back at you.

Corelly x

[MummyNaomi]

It's a whole new world for her Corelly - hopefully she continues her development in leaps and bounds now to make up for the 'lost' time as such. I cant believe Black Saturday was a year ago, far out, thats crazy. My DH was in Melb that weekend and I was watching it all unfold on the TV back here in Adelaide. You are right, tragedys like that help put things in perspective, and looking at Baileys smiling face always reminds me how lucky we are.

Bailey is going well - he has now worked out how to get himself back up into a sitting position. Previously he would get himself in a crawling position, be able to go no-where and end up crying out for help as he would get stuck face down. Now he can push himself back up and somehow (god knows how?) manages to flip his calves forward so he is sitting up. The brace has made him so flexible I must admit as he really has to push his body to the limits to manouver himself about.

We have an xray on March 4th but I notice on the referral that it says to xray in the brace. I really dont see the point as we know his hip sockets are stable and I thought the Ortho surgeon would need to have an xray with the legs straight to be able to measure the acetabular angles? Does that sound right? Anyway, I will ring him a few days before and talk to him about it, as I really want an update on what angle the hips are now so we know if improvement is happening, and I am also hoping that if there is a good improvement we can start weaning him of the brace as we are still at 23.5 hours per day and it would be lovely to have him out of the brace during the day and more importantly help with his development with crawling, rolling etc. I know I shouldn't compare his situation to others, but it seems our Dr is very conservative. Thats not necessarily a bad thing, as I'd rather just get the treatment done rather than risk extending the amount of months he needs to wear the brace, but by the same token if there is any possibility of time out of it, I want to investigate that too. I go back to work on March 8th, and my DH will be a SAHD until mid July so it would be good if Bailey has some time to get used to crawling etc before he starts childcare in mid July, I would love for him to be completely mobile for childcare so he doesn't have to rely on the carers to move him about (who are of course looking after other children too)

Anyway, enough waffle from me...

Smarti - hope everything is going ok for your DD

Jesska - How's Lahni going? Still rolling up a storm?

Crosswig - I hope DD is still moving around the place and getting up to mischief

Karen - hows your LO going, I hope he is well too

Naomi

[wysiwyg]

Naomi - Personally I think you are right to ask for an xray without the brace or a with and without. With CJ (whose hips as you know weren't stable in the beginning) the first ultrasound which was after four weeks of brace had in brace and then not in brace as they said that really all the one in the brace can do is show you that the brace is keeping the hips in the correct position. You are right to say about not comparing but also is good to question it as sometimes mistakes can be made and is better to ask and double check that the scan with the brace is the right thing at this stage. Wow about Bailey being able to get back up to sitting - that is a huge effort.

Corelly - Hooray for being out of the brace during the day and the night wearing will be over before you know it. I know what you mean about the little flutter when going back for each appointment, I have only been back for one since CJ was out of the brace full time and hiding at the back of my mind was the fear she would have to go back into it, but so far so good. CJ was also in the one of the worst categories and will have to have a check each year too. She isn't crawling (going backwards and 360) yet and hasn't rolled but I really think this is just her personality rather than the fact she was in the brace as her legs are so strong now and she will stand up straight with legs together now whereas when brace first came off she "couldn't stop a pig in a passage" as my DH would say.

Hope everyone else's bubs are doing ok.

[wiggs]

Hi Everyone, sorry it has been so long, life has been a little crazy hence the lack of posts but I have been keeping up with everyone's elses posts.

Correly - congratulations on such wonderful news. i am absoloutly delighted for you and really hope this is the begining of the end of your journey.

MummyNaomi - I agree, listen to your instincts. Our bubs had very similar initial diagnosis and they x-rayed Chloe with no brace and legs straight. You are right, we shouldn't compare but the radiologist staff at the Royal Childrens said it's poitless x-raying with brace on.

Chloe is continuing to love her brace free time and is becoming more mobile. She can now sit up confidently on her own, crawling, however, is another thing. She is just too flexible! With the brace on Chloe was able to crawl backwards but without it she goes from being on her tummy, to moving backwards once, doing the splits and then sitting up. She is so comfortable in the splits and on her tummy often has her legs in braced position anyway. I am starting to think she is going to skip the whole crawling thing altogether which is weird for me as her brother crawled from 6 months to 12 months.
Often on her tummy she will put her leg right up next to her ear, it really is amazing what she can do and i will have to enrol her in gym or dancing later on to make use of this insane flexibility.
Am not sure what kind of intervention I can get her to help with the whole crawling thing as I don't think anyone can make her LESS flexible. Going back to RCH mid march and I think I will show my clinician what is happening then and see if she needs physio or something.

[MummyNaomi]

Thanks Vic and Wiggs for the info re the Xray, I've been thinking about it since your post Wiggs about Chloes improvements and wondering if our Ortho could have made an error with the Xray Referral. I have great faith in him as a Dr, but everyone can make mistakes and perhaps it is just the norm for him to xray babies in splints (and just wrote this automatically) as he would see more with socket issues than just acetabular angles, as from all the research I have done usually babies have issues with both, its much less common that its just the angles. Anyway, I have sent him an email as I got his card out to give him a ring and noticed he had an email address, this is what I wrote (I dont want him to think I doubt him as a Dr), probably sounds a bit sucky hahahha

Hi There Dr xx,

I hope it’s ok to email you with a question regarding our son’s treatment, I was going to call the office but then noticed your email address on our appointment card.

xx referred us to you late last year, and you are kindly treating our baby son Bailey xxx for Hip Dysplasia. We have our next appointment with you on March 4th for which we have a referral from you for an Xray to bring to that appointment. I just noticed though on the Xray referral that is says to Xray Bailey in the splint. I wonder if this could be an error? Our understanding from consulting with you is that Bailey’s hips are stable and that it is only the angles that has resulted in his treatment (dennis brown bar). I recall that the last xray we had in November to determine the degree of his acetabular angles was with his legs straight down and that you measured the angles from this Xray Image. As we understand his hips are stable, I am wondering if this xray should be the same (with legs straight out of the brace) so we can determine what improvement has occurred in the angles?

Sorry to question you, but we are hoping for a progress report at the March appointment to understand that the treatment is effective and I just wanted to be sure that the Xray we have at that time will provide this information. I recall you mentioning to me that another infant you were treating had a great improvement over three months, and Bailey would have been in his brace for 3 months at this point so this made me think you would be looking for these measurements at this time.

If indeed the Xray referral documentation needs to be altered I can pick it up prior to heading over to the xray department on March 4th or perhaps your staff could post it out to us?

If it is more appropriate for me to ring your clinic, please let me know, I will be happy to do so.

Thanks for your time, Kind Regards,

ETA - Wiggs, I used to take Bailey to Gymbaroo (Babyroo) prior to the brace and it was great, I wonder if something like that would be good for Chloe to encourage her to crawl?

[smarti]

Hi everyone

Have not been on the computer for days, but well done Corelly on getting the brace off! You all must be thrilled.

Corelly & Naomi - thanks for asking how we are going.

DD2 had her little procedure done this morning actually. It was only a quick one but of course being a bub, had to have a general anaesthetic for it which we were a bit nervous about. The procedure went fine and no need for further surgery thank god. They called me to collect her from recovery and I could hear her crying the minute the lift doors opened! All the nurses were fussing over her and having cuddles. She was very happy to have a cuddle with mum though! She was pretty miserable for the next hour or so before we left the hospital, but think it was a mixture of crankiness from GA, overtired, hungry (had to be fasted prior) and wondering why she couldn't crawl about!

Anyway, she was very happy and all smiles when we got in the car and I carried her into her bedroom when we got home to close the blind from the heat and she practically leapt out of my arms into her cot! She has been passed out for 90 mins now. Am sure it is the anaesthic wearing off though and am preparing myself for some restless days and nights ahead! Oh, and of course much crankiness that she can't move around as easily anymore! Can you believe that on the weekend she started furniture cruising! Oh well, she'll do it again one day...

Her big sister is at a birthday party now and I am sure will be very curious about this weird thing her baby is now wearing!

Naomi - sounds like Bailey could become an olympic gymnast or performer with Cirque Du Soleil with his flexibility!