Hip Dysplaysia Support Group #2

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I've just discovered that we need a new car seat - although Bailey (just) fits in ours, after yesterdays 'adjustment' he has been upset in the car and today I discovered why, as it is now too narrow it is pushing his calves in which is pinching his skin near the knee where the cuff is...

Wiggs - what car seat did you buy? I am not ready to turn Bailey around to front facing yet, he is too little imo - but I doubt I am going to find a rear facing seat wide enough. I'll go out tomrrow and see what I can find but any experiences/experience with wider car seats would be appreciated

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MummyNaomi - we had to have a different car seat for our DS, although I can't give any advice about the type of rear facing seat to buy I can say that we actually never brought a car seat. The hospital (PMH) set up an appt with Kids Safe and they rented us one for the entire time... only cost about $50 or so dollars plus about the same for deposit. It was part of the hospitals duty of care to not let us leave the hospital without a secure an safe method of travel for DS. A much better solution for us than buying a car seat that would only be used for a short time.

I'm not sure what state you are in but it might be worth investigating :)

Hi girls,

DD is having her second ultrasound tomorrow at Westmead Children's Hospital. I am praying that her hips have improved (was 44% and 48% at 6 week ultrasound) otherwise was told she will be referred to an ortho and will be in a harness or brace. She will be 11 weeks on Wednesday. Hoping we will be able to get results and treatment quickly if need be! Will post tomorrow arvo on how we get on.

Goodluck with the ultrasound tomorrow!! i hope her hips have improved. :)

hi new to this site,
Have a little girl just gone into spica cast. Usual six week deal hopefully and then braces. Think I have my head around it. She is 9 months old and diagnosed late. Had just started to commando crawl and was told she would not do this in the cast but after one week she is getting around. just wondering if this is normal and can it do any damage? she is getting great upper body strength already. Anyone had any dealings with this. Thanks Rarni:)

hi rarni, welcome to the forum.
hows your lil girl going in the spica?

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hi new to this site,
Have a little girl just gone into spica cast. Usual six week deal hopefully and then braces. Think I have my head around it. She is 9 months old and diagnosed late. Had just started to commando crawl and was told she would not do this in the cast but after one week she is getting around. just wondering if this is normal and can it do any damage? she is getting great upper body strength already. Anyone had any dealings with this. Thanks Rarni:)

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Hi Rarni

Welcome:D

My DS was diagnosed at 20mths - he commando crawled as soon as he was out of bed after the first cast went on.. the Dr's said that this wasn't a problem and not to be concerned because how can you stop them really??!!
DS had 3 casts and crawled in all of them.. the only thing you need to watch out for is wearing through to the knees.. DS wore through 2 of his casts... the third they re-inforsed but this then created a problem when removing it as it was too thick to get the saw through. I would suggest that if you notice this happening to use duck tape or something to re-inforce the knees.

The last brace we has DS even learnt to walk in it!!!! I think there just isn't stopping some kids... we never stressed about it.. he was happy and that was the main thing in our opinion.

Her hips have improved - we still have to wait a few days for results so we can talk to the paediatrician but the ultrasound lady said she is not grade 2 anymore and that they have improved. She said she doesnt think she will need to go into a brace or harness. Sooooo happy to hear.

erybery that is wonderful news! Hoping for improvement at our mid Jan x-ray too.
It's so great to hear good news and that our bubs do improve over time. Good luck with your follow up aptmt.

Can't believe it but Chloe is crawling backwards brace and all, is absoloutly obsessed with it. All the people at the RCH told me it doesn't slow their development but I didn't really believe them. Makes me feel better about the whole thing.

Oh wow, Wiggs!!! Crawling in the brace! Fantastic :D

Well, we had our appointment today with the surgeon and we are not yet brace free. Her bad hip is developing well, but still not enough to be out of the brace. The better hip is perfect now, so that's something. Our next appointment is in seven weeks, so through Christmas and New Year for us :wall:

The challange for us now is that we have a holiday booked for nine weeks time. We've postponed it once already, used a heap of frequent flyer points to change the flights, and changed it to March, thinking "For sure, she'll be out of the brace". Now I'm not so sure.

Just trying to stay positive and hope it doesn't get too hot over the next few weeks. The surgeon said that if we wanted to take her out of the brace for a bit longer if we were going to the beach or the pool, we can. So I'm thinking that I'll take her high chair to my mum's for lunch on Christmas day and damn it, DD will sit with us for our first Christmas together, instead of lying on the floor while we eat.

Hope everyone has a lovely Christmas

Corelly x

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Hi Rarni

Welcome:D

My DS was diagnosed at 20mths - he commando crawled as soon as he was out of bed after the first cast went on.. the Dr's said that this wasn't a problem and not to be concerned because how can you stop them really??!!
DS had 3 casts and crawled in all of them.. the only thing you need to watch out for is wearing through to the knees.. DS wore through 2 of his casts... the third they re-inforsed but this then created a problem when removing it as it was too thick to get the saw through. I would suggest that if you notice this happening to use duck tape or something to re-inforce the knees.

The last brace we has DS even learnt to walk in it!!!! I think there just isn't stopping some kids... we never stressed about it.. he was happy and that was the main thing in our opinion.

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Hey Lizy 79, Jesska,
Thanks for your replies. Great to hear that they crawl in the cast no problem. She is getting so fast now that she has a rocking action up. Had a shocking day yesterday. Had to go for MRI to check hips had not redislocated in cast. Gave DS liquid sedation which she promptly spewed up and then they couldn't give her more as they didnt know how much she had spewed. When she finally slept after 20 minutes there was a hold up on the machine and after 45 minutes of waiting she woke up when they went to put her in. Then they tried to pin her down with no success and ended up having to do ct scan instead. So more radiation. It scares the life out of me. Very emotional day. Does anyone know the effects of so many xrays. I am really frustrated that they dont cover her ovaries for xrays when I know she has many ahead of her.

Lizy79 your DS sounds like a little trooper crawling in all casts and wearing out the knees. We have put a sheep skin under her cut out in body shape and that works great to protect the polished floor boards and is slippery for her to get around. Carpet areas and no worries. hey least this way she can help with the cleaning. ha ha Rarni

Chanzanlow - just wondering how things went with your DD on Tuesday, have been thinking about you. Hope all is going OK and you are adjusting. The first week is not fun but it does get better. :hug:

Hi Everyone - I'm having a bit of a tough time emotionally so sorry for a selfish post - I just cant shake this sadness I feel of Bailey's situation in the brace. It's really silly as I think he is coping fine most of the time, but I just have alot of anger, resentment and sadness about the situation that I just cant seem to get past. I get panicky every time a baby around us hits a milestone - eg crawling, rolling, pulling themselves up etc and it just reminds me how behind and immobile my little guy is. Don't get me wrong, I am enjoying him, but I just worry ALOT and having the clock tick down as I am returning to work in March, this isn't helping either. I keep telling myself logical things like "Just enjoy this time", "He'll catch up", "Don't waste this precious baby time" etc, but then something happens to drag me back down again (eg simple things like a bath used to relax him before bed, now as I have to flip him over so many times to get the brace back on him after a bath and then dress him he is cranky and it just drags out bed time etc). The biggest issue I have is cuddles, and its making me cry typing this out but I just want to be able to hold my baby close in a proper cuddle - are these feelings normal? I just cant shake them, I think I cry at least once a day over something brace related............ :( I feel like no-one IRL understands, or they think that as I am coping with the practicalities that I am coping emotionally, and in fairness I have been hiding most of my feelings as I dont want to burden people and when I have let my feelings out I am not finding the support or understanding that I am looking for (and am sooooooooooooo over people telling me that he'll be out of the brace before I know it, and he'll grow up to be healthy, wont remember it etc etc - I KNOW all that, it doesn't help me!). I know he doesn't have cancer and is healthy etc etc, and I know there are always people worse off, but this is our 'worst' situation and I am struggling to accept it, I dont think I will ever accept that this is how my babies first year is supposed to be........I feel robbed of this special time - rolling, crawling, learning to stand, by the time these all happen I will be back at work and I will miss it all, its not fair. I scrimped and saved like a mad woman to have almost 12 months off as these things were important to me. Unfortunately I cannot extend my maternity leave. Bailey was already behind in these things anyway (his delayed gross motor issues led us to the DDH and there seems no sign that he will do these things in the brace unlike other babies)

I just dont know what to do..... Maybe I just need to find a way to accept that there is nothing I CAN do, and this is they key - it all seems logical in my mind, but overwhelmingly the emotion keeps over-riding everything :(

Naomi

HI MummyNaomi,

I know its hard - I think we all know and can relate.... at sometime even if you weren't going through this with your little man it would be something else. I think we can all agree that at some stage being a mum we have second guessed ourselves, felt bad that we missed something, got angry at our babies for something silly like lack of sleep... the list goes on. What you are feeling is normal but you are not alone.... My DS was dignosed after I had gone back to work fulltime.... he has gone thru all the braces, casts etc with me at work.... my partner took 7 wks off in the beginning but then DS had to go to daycare... I have had to take time off for appointments so am torn between feeling guilty that I'm taking time off work and feeling guilty that I can't dedicate more time at home when my DS is going through such a big life event - double edged sword really:wall:

Find other things that he may enjoy - maybe a walk outside in the pram or leave the house work for a little while and lay down and just watch him play... I'm sure he's not too fussed... so why should you be... Try and be happy :D BUT if it seems never ending and you are always feeling sad then I would talk to your Dr about it in case its more than that.

Hi Mummy Naomi,

Big hugs to you. I had a meltdown on here a week or so ago and your words sing loudly in my ears. I know our bubs don't have any horrible disease, but it's still so hard to see them. My DD is almost nine months old, and up until now, I haven't really noticed that she is behind because the gap hasn't been too great. But I made the mistake the other day of going onto the page of "babies born march etc" and it just about killed me to see what these "normal" babies are up to.

Our babies are so precious, so special, even though they are in braces or spicas. I know I don't have to say that, but they just are. And the day that my DD walks, I will be so proud. Proud to see her take those steps and proud that we've gotten through this hard time. Hang in there, Naomi. I know how you feel about hiding how you feel from everyone - it's easier to do that then get the standard "oh, she'll be fine" and "stay positive", when you don't have any positive thing left in your body. Let it all out here, in this forum.

Corelly x

Ahhh, thanks guys. I just needed to get it out before I my brain exploded. Lizy - with regard to your last comment, I am certain I'm not suffering from depression etc, (I checked and did the quiz on the beyond blue website to be sure !!) but I think its REALLY hard to take the emotion out when its about your child. I spend ALOT of quality time with Bailey and make sure he and I have plenty of fun activity time as well as lots of simple cuddles and tickles and kisses constantly - so I do enjoy him dont get me wrong (its just that the whole brace hip thing is always there at the back of my mind IYKWIM)

Corelly - your message REALLY helped, how wonderful it is to be understood, I think your kind words are what I needed, and I felt a bit of peace about it all when I read your message, thankyou :) And you are right, it will be a VERY special day when we see our precious kids walk for the first time, I really look forward to that (I'll take crawling for now though when it happens hehehe :) )

Naomi - hope getting it out helped a bit. Just 1 idea if you are missing the cuddles with out the brace. Could you sometimes do a sponge bath with him in the brace and the time he would normally be out of the brace for the bath spend having brace free cuddles. Just an idea.

Hi everyone, good news from us had our follow up x-ray after stopping using the brace mid-November and all is good, just want to see DD in six months for another x-ray. On the x-ray the angle on left hip looked not so good but measured fine and they were happy that cartlidge there is fine just not showing on x-ray. Was madness at RCH MEL today, to park there you had to leave keys in car as had run out of spaces so were parking cars everywhere and then moving them!

Naomi - we used to bath CJ only every few days (and still do to be honest) and she has the best skin ever - so if you did want to spend your brace free time on cuddles etc - skipping the bath is a great idea in my opinion.

Hope Christmas and the New Year brings good progress for everyone's bubs.

Awesome news, Wysiwyg! Hope you can continue along with great bone growth! I've been to RCH on a busy day, had to leave my keys too. It's pure madness in that carpark!!

Mummy Naomi, I'm so glad I could help. I feel like I take a lot from these posts, and then feel guilty, like I'm not helping anyone else. Gotta love guilt. Such an awesome emotion ;) . I hope you have a nice Christmas and I'm sure Bailey will be a spoilt boy - lucky little man!

And for me this Christmas - well we're pretty broke after bills, bills, bills. But we put DDs presents on layby in July so she'll be spoilt too. And I've decided to not stress on Christmas Day about how long she's out of the brace. We're allowed two free hours a day, but I'm not going to watch the clock religiously. I want our first Christmas as a family to be special and yes, I'm going to be naughty (well, until my rotten subconscious starts complaining, anyway).

Have a great Christmas everyone and for those of you experiencing their first Christmas as a parent like me, I hope you have lots of special memories at the end of it.

Corelly x