Hip Dysplaysia Support Group #3

[krystals]

Thanks Milly! I really appreciate your time in replying! We finally got our appt at westmead for next wednesday and they want an updated ultrasound in the meantime- it's usually a two week wait in our aread for ultrasounds, so I begged! Got one tomorrow at 9am thank goodness!

Milly, I noticed DS was getting a flat head because of his torticollis at about 8 1/2 weeks and got really freaked out as it was VERY noticeable! His ears and even his eyes were uneven. Thankfully it's all settling down a bit now and his head isn't as flat as we've been giving him heaps of tummy time. I guess that might change once he's got his harness? I'm not sure... Anyway, cuddles, tummy time and carrying him in his wrap have all helped. Is your DD seeing a physio at all for her neck? Basically the exercises our physio have given us are all just trying to get DS's interest on his 'bad' side using a mirror and sounds etc. It's working really well. It's been 8 weeks now and although he definitely prefers to face his left, he now CAN face right- even to the point that we've noticed he sleeps sometimes facing right. (he sleeps on his back)

[Madcat]

Hi all hope all is going well.

Quick update, Miss K is going in for her op to remove pins from hipbone in a couple of weeks. We are all excited about it! Strange i know but it means one more step closer to having a better hip! Means we can get on with doing the other things she wants to do like Karate (gulp) and ballet!

Its so great we can share our experiences here, i have learnt so much i didn't know, Thanks guys! x

I hope little ones are well and happy.

[furgurnie]

Hi ladies,

It’s been a while between posts! Emma is doing great. She is still in the rhino cruiser brace but we are hoping that after her x-ray next month that it might be removed during the day. She has learnt to crawl in the brace and is trying her hardest to stand but her little legs are still a little weak for that! I just hope that no more surgery is required years down the track, I don't think my back could handle that!

Beemer -how’d the ultrasound go?

OLEM- how are you coping with both kids having hip dysplasia? When does your eldest girl have her 1st lot of surgery and what do they plan to do? It’s amazing how often this problem is identified so late, it makes me angry to know that something could have been done much earlier for my little girl too.

Krystals- how did your little boy’s ultrasound go?

Milly5- that is fantastic news about your daughter’s scan results, fingers crossed the harness can come off real soon.

Madcat- yay, finally you can see the finish line, hope all goes well for miss K’s op. She must be so happy to again be able to walk like all other kids her age, does she have any pain in her hip at all?

Hope everyone is doing ok

[*Beema*]

Hi lovely ladies

We had DD2's scan last Saturday and it looks like it went reasonably well, but we don't get the results until this week as DD2's Paed has been on leave. I will be back when we have the results, and to write some personals, I have to go and pack as we are going away tomorrow
xxoo

[krystals]

Do you gals all remember your first day?
DS1 Had his harness fitted today and I'm wondering where my little boy went! He hasn't cried like this since he was born- literally, when he was born he cried for an hour straight, and hasn't cried since- just grizzled a bit. But today he has been Crying (with a capital 'C') I feel like I've started all over just when I was getting it all sorted out! I know it'll get a lot easier, but today has been emotionally difficult. Not particularly because of the harness, but because of J's reaction to it.

How on earth can you keep their little legs warm? I haven't had a chance to try the legwarmers yet, but what did you do for pants??? Are they out?

Thanks for the tips re: carseats, we had to take the bottom padding out so he could fit his legs in- we have a meridian too...will try the towel under his butt next time. He did sleep a bit on the way home in between crying

[Miss.September]

Krystals, I remember that first night, DD was crying like her heart was about to break and I was pacing the hall, trying to get her to settle while crying too. It's so so difficult. From memory, I think we put her pants over the brace, got her longer pants. Massive hugs to you.

Beema - have you got the results back yet?

[*Beema*]

Beema - have you got the results back yet?

I spoke to DD2's Paed yesterday and he only has a short report, which he said looked pretty good, but can't say until he see's the full report and said it will be another week

Big Krystals, I can only imagine how difficult it must be

[krystals]

Beema, good luck with DDs report!

I have a couple of questions- we're not used to it yet. Did your bubs have trouble sleeping in the harness? We've gone from having DS's night sleep of 12 hours to him waking every 45 minutes crying. I've mentioned that before the harness he didn't cry, just complained, and now he's wailing every 45 minutes when he wakes up. We've put a towel under his feet- has anybody been told this is the wrong thing to do?

Another question- in the Pavlik, are they meant to be able to kick their legs? He can move the unaffected leg fine, lots of kicking actually, but the right leg isn't moving at all. He can move his toes and they're the right colour etc, but he's not moving his leg at all.

I don't feel like we were given a whole heap of information! Verrrrrrrry tired

[wysiwyg]

I haven't been in the thread in ages - DD was in a DB brace from 8 to 24 weeks, and we have her 18 month follow up next week.

Krystals - Do you have a follow up appointment a day or two after the fitting - we were given one because they said expect that there are loads of questions after the first day. DD was not good the two days but after that she didn't notice it. If you don't have an appointment did you have someone you can call/email (we were through RCH Melbourne) and could email or phone any questions, I would be asking them about the movement, just because I know they told us to take note if was different in both legs (DD had an issue in both but was worse in one than other). DD wasn't in a Pavlik but a DB brace and we were told could put a towel under her feet - after the first couple of days she went back to sleeping ok - so hope is same for you. We always had pants on over the brace (normally long sleeved onsie's in a large size) as most was in winter so needed it.

Beema - Good luck with DD's report

Hello to everyone else - is ages since have been in so I don't recognize too many names - shame so many babies have to go through it really.

I am pretty nervous about the check up next week - mainly because DD isn't walking yet and the 12month scan wasn't quite as good as could have been on the worse hip. What will be will be I suppose. I really hope that they give some suggestions about getting her walking as I am over the holding onto her hand - all her little friends are walking and it makes the park a pain. If we hadn't had the brace maybe I wouldn't be so bothered about her taking her own time. She was very late to crawl too about 14 months.

A question, I am now expecting number two - does anyone know what happens for DD's X-Ray, I remember they always ask you if you could be pregnant - but what if you say yes - do you still get to go in and hold them, do you have to wear something? any one ideas on how it works?

[karma1410]

Just a quick post and run tonight...fingers crossed that in 7 1/2 days (but who's counting?), DD will hopefully be brace free during the day. Six weeks in the cast and 6 1/2 weeks in the rhino cruiser brace after her open reduction...let's hope they have both done their job. Everything has looked positive so far and so we are hoping that after the x-ray on the 6th December, our little girl will be free during the day at least. The surgeon seemed to think that would be the case at our last appointment 3 weeks ago.

DD will be two days short of 16 months old. I will have tears in my eyes the day that she gets back up on her feet... Who am I kidding, I will have tears in my eyes as soon as the brace comes off. It has not been removed or completely undone even once in the last 6 1/2 weeks so seeing it come off will be a special moment in itself. :-)

[milly5]

Hi ladies!

krystals - we've been doing all of the "sitmulate to the other side" - sometimes I think she is interested, and sometimes I think she doesn't give a rat's @@@@ :roll eyes:
oh and the crying - yep. DD HOWLS during and after her physio and bath day - I SWEAR her eyes are pleading with me as the phsyio is re-fitting the harness..... she also gets really frustrated on tummy time and when she is trying to push against the harness and can't quite do it, she cries.
re keeping your son's legs warm - long socks, or wondersuits/romper suits, a size bigger than normal - couldn't get any pants over they harness that didn't do up at the crutch. I also got the physio to put some "tubifast" (I think it's called that)over the leg part as the velcro was sticking to everything. I haven't had a problem keeping DD warm, I coult get the warm clothes OK, though she can't wear her booties in the harness, but I found it harder to keep her cool, and look after those thigh skin folds in the heat.

Madcat - good news then for you and miss K - hoping the time flies for you both!

furgurnie - here's hoping for good news too!

Beema - any further news?

wysiwgy - can someone else go in with DD for the xray? they do have lead aprons, but I wouldn't risk it, and not sure if they would let you anyway.

karma - so is DD day-brace free? I have tears in my eyes for you!

AFM - well, our appt is in 2 days. last week we had a different physio as our usual one was off sick, and she was all "don't get your hopes up" I know I know, but she was REALLY negative about it - I wnet home that night and dreamt we got told "another 6 weeks and then surgery!" of course I woke up in tears. I am really getting "over it" at the moment - the heat (and subsequesnt heat rashes), the travel - its an entire day for us, the positioning (or lack there of) and the handling. I don't know how you ladies survive with the bigger bubs and the more intensive treatment. shesh! DD just has a pavlick and I am struggling! you all deserve medals!

[karma1410]

milly5 - I really feel for you...it doesn't matter how intensive the treatment it as every form of treatment seems to have it's own unique challenges. I can't imagine how you cope with younger babies that are so tiny and new when you have to manage the harness and see them upset and struggling against it at times. I think everyone here has done such an amazing job in caring for their precious little ones through their hip journeys.

Thanks for asking about DD. Yes, she is now brace free during the day!!!! We filmed the moment that we took the brace off and I have watched over and over again the radiant smile that broke out on our little girl's face when she realised that her legs were free. Even thinking about it now makes me a little teary. Thankfully she has no problems with the brace going back on at night, but when she wakes in the morning and I say to her "Do you want to take your brace off?", her face lights up and she pushes down on the waist band. She is so precious. :-)

Taking the brace off was amazing but it was also a reality check. Before her surgery, DD was crawling like crazy and constantly cruising the furniture and standing holding on with only one hand. When the brace came off, she couldn't even roll over...not at all! It was like having a grown up infant. I didn't know that it was even possible to lose your balance while lying flat on your belly, but apparently is is because DD kept tipping forward somehow with her legs flying up in the air behind her. Very odd! Her legs were all floppy and awkward and all over the place.

The brace came off last Monday and she started to roll with assistance on Wednesday and on her own on Thursday. She has now discovered that she can also roll in her brace. Yesterday she showed signs of wanting to commando crawl and this morning she woke up and decided she could commando crawl and I haven't been able to stop her. It is obviously hard work for her and she drags her surgery leg, but at least she is on the move again. I have watched her try to pull her knees in under her to crawl and she can just get them under, but they won't bear weight for long before sliding back into a frog leg position. She can sit up again now for a few seconds but needs to be held because she loses her balance constantly and tips over. She still lies in a frog leg position or V shape position on her belly and on her back, but at least she now fits into her car seat, stroller and high chair a little more easily. And she had a bath...a dear, sweet bath! After 13 weeks without a bath, she was beside herself with excitement and splashed so hard that the bathroom walls were covered in bath water. It really is the simple things that matter. :-)

We have our next appointment in three months and I just hope and pray that her hip stays in position and continues to have good growth. I am constantly convincing myself that I can hear popping and looking for signs that something isn't right, but I think I just need to take a deep breath and relax.

I hope everyone is traveling well and there is lots of good news on the way. :-)

[milly5]

thanks Karma,
I think I am finding it so hard because this is No1 for us - who was a LONG time coming after a couple of losses to, and harness wearing and weekly trips were not part of our idealic little dream, so if I be really honest, I am feeling somewhat "ripped off" in many ways (particularly on a bad day when I am feeling all "woe is me"). I got all teary when I packed away brand new clothes that DD never got to wear because of the harness that are now too small anyway. And really - this should be a "so what, not an issue" thing but for some reason it really upset me.

I am so happy that your daughter copes OK with the brace going back on at night! and your description of her bath brought tears to my eyes!
Does she need to go to physio for "catch up" seeing as she has lost some of her strength and motor skills? That is something I have been thinking about quite a bit because all these devices certainly hamper their ability to move and develop don't they? I wonder how long it takes them to catch up? It certainly sounds like your DD is making up for lost time though!

[karma1410]

I completely understand about feeling "ripped off" and there is nothing wrong with allowing yourself to feel that way, particularly on a tough day. DD is our first too and hip dysplasia doesn't seem to have a lot of respect for our hopes and dreams of motherhood, does it?

I found I was emotional enough packing away DD's smaller clothes just because she outgrew them, let alone clothes that she didn't get to wear because of a hip problem. No wonder that was hard for you...it's so symbolic of your precious little one's earliest days and all that you feel that you have missed out on because of this unexpected problem. You have to allow yourself room to "grieve" because it really is a loss that you are experiencing, so don't be hard on yourself if it all gets on top of you sometimes. I know it did for me, but once you let the emotion out, pick yourself up, dust yourself off and put on a big smile for DD because her happiness and health is what really matters. She will be perfectly happy and okay as long as her Mummy is with her through this, and it sounds like you are doing a great job.

I just kept reminding myself that every day that passed (good or not so good) was another day closer to DD being free again. It won't be long until you are excitedly giving an update about DD being without her harness. I know it doesn't feel like that now. I have been where you are and I remember so clearly how it felt like it would never end. I swear I used to count down not just the days, but the hours too. Whilst in the cast my DD had serious skin problems developing so I had the added worry of whether she may have had a serious infection that I couldn't see. I felt like I was doing something wrong because I couldn't stop her skin from deteriorating and at times I felt like I was letting her down. As it turned out, her skin problem was bad enough to prevent her second cast from being applied so I was right to worry. Logically I knew that I was doing everything in my power to look after her, even blow drying her cast at every nappy change for what added up to well over an hour a day. But it doesn't change how you feel inside when it is all out of your control and you are powerless to protect your baby girl.

Hang in there...it won't be forever and you will come out the other side so proud of both yourself and your baby girl for getting through this period.

At this stage DD won't be having any physio. The surgeon says that it is unlikely to be needed as she will work her way back through her milestones in her own time. Hopefully she should catch up fairly quickly but if there are any residual issues (assuming that her hip is all okay) then physio might be an option at that point, just to address any specific problem. I wouldn't worry too much about your little one falling behind. You will be amazed at what she will learn to do even with her harness. And once she is out of the harness, she will catch up so quickly. From everything I have read and talking to other CDH / DDH mums, most bubs catch up to their peers in a much shorter time than you would think possible. There are a couple of mums on here that could probably attest to that.

Must run because it is 2am (!!!) but just remember that there are always people here to chat if you are having a tough day or need to vent. :-)

[milly5]

Karma, I can't thank you enough for your post!!! sending super big huge cyber hugs your way!!!!!!!!!!!!!!!!!!!!!!!!!!

[karma1410]

You are most welcome. We hip mummies have to look after one another. :-)

Great big cyber hug right back at you!!!!!!

[milly5]

Hi ladies,

I just wanted to let you all know that DD is now harness free!!
I burst out crying when the doctor said it could come off, and after she removed it, I had to give her a hug.
DD was crying and screaming as it was being removed - someone new holding her, and again fiddling with that harness, and afterwards she went straight into my arms, so she didn't even realise it was off until a few minutes later after we left, when I was changing her nappy, and she went to kick her legs, and got a shock that they could move. She was really testing her limits - taking her legs to their usual limits, then going a little bit further, and she had this real look on her face like she was processing, trying to work it all out, it was priceless!
SHe is much more wobbly in the trunk than I expected, so needs a fair bit of support - like your DD karma, she completely lost her balance while laying on her tummy. I have been using a towel under her chest to support her. And I also didn't realise how much the harness also limited her shoulder movement, so she is now flapping her arms alot more too. THe nurse later told me that they do get weak in the chest and shoulders after being in the harness.
Another bonus - she hasn't had the colic either, and has been much easier to settle.
And she is SOOO cuddly! I can't believe how well she just "fits" it is so much easier to feed her!
And I can get to those skin folds (she had three bad areas)! and use our cloth nappies! One thing I had noticed was that she had a real rough area on the side of her knees, from where the strap from her leg to the chest must have passed over, I have been putting heaps of lotion on it, but it is still quite scaley.
And I feel so much better, I knew I was feeling stressed about it all, but I didn't realise just how much it was affecting me.
She has to go back in 3 months for an review and xray, so I hope all remains good.
Ladies, I want to thank you for all your wonderful support. I wish you all the best, and hope your little'uns have a speedy recovery.
xxx

[dusty]

Milly that is fantastic news. I too can't wait to get DD into cloth nappies, I hate the sposies. I bet you had a lovely harness free Xmas

Just over one week in the harness left for DD. At her 8 week scan her hips had improved to within an acceptable range and the Ortho wanted her to keep it on for another month to be safe. Our lovely physio has put texta marks on the leg straps so I can take the bottom off now to wash her and get behind her knees which rub a bit raw. I honestly just want to take it off now but we are almost there. Counting down!