Hip Diplaysia Support Group #3

[Suezt]

Ingrid, welcome to the board. Sophie was diagnosed at 4mths because of the uneven skin folds too - don't worry I never noticed them either. She then went into a brace at 8mths of age (the o/s had hoped that it would rectifiy itself - why he waited another 4mths) and has been in a rhino brace for 7mths now (she's nearly 15mths old). It may not be necessary for your baby to have an operation or even go in a cast. Sophie just went into a brace. Anyway, I'm sure your visit to the o/s will help put your mind at ease. It is really scary at first and quite overwhelming emotionally but you seem like you've done a lot of research. Big hugs to you! Also, I still breastfed whilst Sophie was in the brace - it was a bit hard at first to find the right position - but it certainly is possible. I found pillows helped. All the best!

Nicole, that's fantastic that Scarlett has settled down and everything seems normal! Yahhh! The first week is really tough, but they're amazing how well and quickly they adjust. Quicker than us mums

We have our xray on Wednesday - fingers and toes crossed. We then have our orth surg visit on Monday, Godwilling it'll be the last one in the brace. I really have mixed emotions and too scared to get my hopes up. Anyway, hope you're all having a great week. Susan

[ingrid]

We are back from the surgeons appointment.

It appears Jasmin's hip is not really dislocated but rather her hip socket is not quite growing around the ball properly. She will go in for surgery next week where she will have key hole surgery to cut one of the tendons in her inner thigh. At that stage she will go into a Spica cast for 4-6 weeks. After that he is recommending 6 months in a Denis Browne splint. We think we are coping well but will see once the time comes. He says there is only a 50% chance this will fix the problem and she may require more invasive surgery and another cast and spint at 18 months. Has anyone gone down this path where multiple attempts at fixing the problem have been required? I think its going to be hard enough to do it once let alone have her go through it again (and at an age where she should be more mobile?). Any advice etc is appreciated.

Ingrid

[minimatron]

We see the specialist this time tomorrow. Hoping all is good and olivia will be out of the harness for good. However, as previous experience has knocked me down, i wont be getting too excited. I think this is the 5th time we have been to the specialist. In coming across negative, I am sitting her and am proudly watching my almost 8 month old sitting up on her own, without falling for the past half an hour, bouncing away to play school She certainly has come a long way.

Good luck to those who are having ops soon or are getting fitted for splints/harnesses. I will let you know our news tomorrow afternoon.

Love to mums and bubs

Melissa

[becky]

Hi everyone,
I just wrote a big post about how Chelsea's Xrays were fine, but just as I was posting it, the Dr rang and said that no, there is something wrong with her right leg, and to go straight in Monday morning for an ultra sound.
Apparantly the measurement for a normal hip is 60 somethings (dont know if you guys know what this means?) Well Chelse'a right leg is at 55.9. Again I dont really know what this means, but its reason enough for them to want us in for another ultra sound and an appointment with the paedeatrician.
Any ideas what these measurements are? I guess I'll be spending a bit more time with you guys......

[bridee]

Becky - I expect they are talking about the % of coverage the hip has. Normal I've been told is around 70%. My daughter currently has 72% coverage on the left hip which we have been told is normal and the right hip is at 67% which is considered mild. I wasn't told orginally what the coverage was but in 6 weeks the right hip has gone from severe to mild and the left from mild to normal. Georgie has been in a Pavlik Harness.

[minimatron]

Hey ,
Just to let you know the doc has given Olivia the all clear and she no longer needs to be in the harness after a total of 28 weeks. We are so happy. We get an x-ray and see the specailist in May 2009...it seems so far away.
Good luck everyone and thanks for your support.
Love Melissa

[bridee]

Hey Melissa, that is fantastic news. Very happy for you and Olivia.

[Rachelle]

That is great news Melissa!! I am sure you are so happy to have the brace off of her! Congrats and keep us posted as to her development now that she has the brace off!

Take Care,

Rachelle

[becky]

Hi guys....
Im sure none of you will be offended when I say, "Yay! I wont be joining you guys in here!"
We got Chelsea results back today, and her hips have grown in and they are now 100% in the right place. Nothing wrong whatsoever.
So I wish all of you the very best. Good luck to you and your bubs, you are all incredibly brave and I admire how well you cope with it all!
I hope your bubs are all better really really soon!!!

[Rachelle]

That is truly great news Becky!!! I am happy that you won't have to go through it all. It's definitely not easy. The best of wishes to you and your family!!!

Rachelle

[Suezt]

Congratulations Becky and Melissa - we're celebrating with you too!

We had our check up today with the Orthopaedic Surgeon and I'm excited to let you know that after 7 months of wearing the brace - Sophie is BRACE FREE!

He showed me the xrays and her development from her first xray at 4 months old when it was first detected (she went into a brace at 8mths) - it was amazing to see the transition over time. Her hip is now in its proper place and the ball of the hip is developing as it should! YAH, YAH, YAH!! It is still slightly smaller than the right hip but that will develop without the aid of a brace over time.

She will need to go back to the OS when she turns 2 just so that he can monitor her hips' development after she has become mobile ie walking. So it's all super exciting! I asked him about crawling (as she doesn't and couldn't with the brace) and he said that crawling isn't considered a mile stone and that she doesn't need to crawl as part of her normal development. I was relieved cause a few people (strangers!) had commented on her bum shuffling and saying that she "needs" to crawl as part of normal development - to which the OS replied "that's absolute rubbish!". So I was so relieved to hear his reassurance and know that my little girl is right on track. He said now that she's out of the brace she'll be off and wouldn't be surprised if she's walking by Christmas. Oh no!! the fun may begin!!! In the last 2 weeks she's started to pull herself up so it's begun!

It was funny because I shared with the OS my fear now in the brace coming off and her being able to sleep properly. He laughed and said I'd become "brace dependant!!" which all parents have said to him the same after they've been told their child is brace free! So he said if she finds it hard adjusting then she can sleep in the brace at night and slowly decrease it over time or just go cold turkey. For the first time in 7mths Sophie's just gone down for her nap now without a brace. And is asleep! A milestone!

Leading up to her appointment today we were unsure whether to get excited or not in case our hopes were dashed so there's been a build up of emotions - but after he said she doesn't need the brace I asked him was he sure and did he just say she didn't need the brace - so he would repeat it again - then the emotions began (I wish Gary had been there to hear the news) After he told me the news I wanted to burst into tears and they're still flowing!!! It's super exciting! Sophie and I on our way home popped into our favourite Chocolate cafe and enjoyed a hot chocolate and a chocolate each as celebration!

THANK YOU everyone for your prayers, well wishes, thoughts and care you've shown to us since we first heard that Sophie had hip dysplasia 11 months ago and since I've been on this site. You've certainly helped us get through it. Feel free to have a chardy or chocolate with us to celebrate!!!

All the best to all your bubs and let's keep the good news reeling ... who's next?
Susan & Sophie
xxxx

[nicoli]

Hi all

Congrats to Olivia on being harness free! And Becky - thank goodness you don't need to worry anymore.

An update on Scarlett - she is doing extremely well in her harness now. She has her good and bad days like any baby but I don't think it has anything to do with the harness. She has learnt to kick her legs out to the sides which she seems quite pleased about. She has also developed a new ear piercing noise (more like a squeal) that she graces us with all the time now.

We have our next ultrasound and appointment with the orth surgeon on 18 Dec to see how she is progressing. I am hoping we might be able to take the harness of for bathing after that. Fingers crossed. I am also hoping I can take it off a bit during the day by christmas as we will be staying at my in-laws house at the beach! We'll have to wait and see.

I also met another mum through my playgroup who's baby just came out of a harness after 2 months. It has been great to actually meet another baby who has come through the other side and seems totally normal.

Scarlett had a photo with Santa today - she looks more happy than he does!

[minimatron]

Well done Susan and Sophie, congrats on being brace free and congrats to becky too.
Its been almost a week since we have been brace free and sleeping at night has become difficult because Olivia gets stuck in all sorts of positions. i think the main problem is getting off to sleep tho, instead of harness, pjs and bed at 8pm, its pjs then lets stay up til 10pm...yuck.
Am glad to hear Scarlett is doing well, good luck at the appointment.
Thanks Rachelle for the well wishes. Hope you are going well.
I will pop in here from time to time. Just a big thanks for everyones support and advice, its made life much easier
Love to you all
Melissa

[KylieCL]

Hey All

It's been a while since i've managed to find my way back here we've had a very busy few weeks with weddings or birthdays every weekend so as you can imagine we are very warn out!

Azaliah is doing well- She has adjusted good to only having to wear the brace at night and is now managing to pull her knees up under herself and rocking back and forth- i gather its only a matter of time untill shes on the move which will be both a exciting and a relief to see another major milestone after her brace has been taken off during the day. But the crawling can wait untill after i have the christmas tree down!

Congratulations to Olivia and Sophie- they must be so pleased to be brace free- i swear when Zali got out of her brace during the day she was never going to wear another dress!

Nicoli, Scarlett is absolutly adorable! She sure deos look pleased with herself in that picture. By the way the dress she is wearing is beautiful!

I hope you are all enjoying the lead up to christmas!

Take Care

[ingrid]

Hi All,

Hoping someone can help. Jasmin had her surgery yesterday and it all went ok. She is not enjoying it (and I dont blame it). She slept really well the first night but that was drug induced I think. So my question is she is in a really wide set spica. She doesnt even come close to fitting in her Safe N Sound Car seat. We cant get the straps to close. We have been shopping and nothing on the market comes close to being able to do up. What has everyone else done about this or has it not been a problem. We are really very disappointed that the hospital didnt tell us this would be such a problem earlier on. What about High Chairs etc? There is not even the slightest possibility she will fit in that even without any of the trays.

Thanks
Ingrid

[Suezt]

Hi Ingrid,

Glad that the surgery went well. I've done a search on the web for you and found this page - it shows the Spelcast car seat. I've also seen this same car seat in a photo on Facebook - that one of the mums is using. I hope that is of help. You're in Australia aren't you? If not it brings up loads of sites internationally for the same seats in a google search.

Hip-Baby.org Practical Page

I did a google search and it looks like this company sells them:
Independent Living Centres Australia Inc - Product Search

And this site also gives tips and places to buy:
http://www.chw.edu.au/parents/kidshe...cial_needs.pdf

All the best.

Congrats Zali - for doing so well. She is such a cutie.

Thanks girls for all the congratulations. We're doing well although we did struggle the first few nights to sleep and also naps. We had the same probs as Melissa and Olivia - getting stuck in the weirdess positions and not sure what to do with all the freedom in the cot!!! In the end I had to allow her to nap during the day with the brace on (for mummy's sake!) But the last 2 nights she has slept through and her naps have got longer also ... yah!!! So the brace officially gone!

Within days too she started pulling herself up at every opportunity so I'm sure it won't be long until she'll have enough strength in her legs and she'll be off. The OS did say it could possibly only take her 3 wks - 3 mths to catch up to her 15mth old peers. They're incredible aren't they!?

Hope you're all having a great week.
love and hugs
Susan
xxxx
Kind regards,
Susan

[BubbaGirl]

Hi Ingrid,

We had to hire a safe and sound carseat from Westmead as it is the only brand that comes with an extendable strap (ours is a babylove). The occupational therapist came and saw us in the recovery ward and padded it right up so Summer fit in it on an angle. It was never a problem and she slept really well in it. Might be worth going back to the hospital if you live in the same city.

Summer couldn't sit up at all and I found the old fashioned bouncinette and a beanbag the best ways of feeding her / carrying her around the house as I did my jobs etc.

Now that she is out of the spica and in the dennis brown orthosis she can sit up a lot better and I'm hoping we'll be able to find a highchair to sit her in. She can also now sit up in the pram.

Hang in there - you will work everything out and get into your own special routine.

Summer is now 8.5 months and just so happy to be able to move her legs. She even rolled over the first night when she had the brace off for the hour a day that she can.

Any questions please let me know as I think my experience comes pretty close to yours.

All the best and just remember there is a solution for eveything during this stage. At first I thought 12 weeks would be an eternity but it did go relatively fast.

Good luck

Karen

[ingrid]

Hi Everyone

THanks for all your advice and tips. When we found out the car seat wasnt going to work, we begged and pleaded with SafenSound to send us the extendable buckle. They were actually very very good and sent it too us next day delivery free of charge. It seems that if we turn the car seat forward facing and pad it up that we can just get the strap and buckle to meet.
Jasmin was a little better yesterday but still fairly unsettled. I did find that getting out with the pram helped so we made the long journey to the local shopping centre on foot (about 5 km each way) and she slept both there and back and woke up while we were there. This killed about 4 hours where she was relatively happy.
Also had quite a reasonable sleep last night. We put her down at 8pm and she wasnt awake again until about 3:30. Not as good as her previously sleeping through the night but not bad considering. We cant get her to take anywhere near as much formula or breastfeed in one go either. SHe used to take either both boobs or 220 ml of formula. Now she is only taking about 80-90 ml at most in one go. Is this normal? They told us she wouldnt take as much but I expected that not to be so much difference.
It also doesnt help her that 4 of her top teeth are all breaking through at once. She got the bottom two just before she was 4 months and the top have decided to make a rapid catch up.
She still is not really back onto solids either and will only take them reluctantly sitting on your lap.
THe other thing we are concerned about is that she hasnt had a bowel movement for 4 days now whereas she used to be 1-2 a day. We are a bit scared about the first one. Is this common after a general anesthetic?

Thanks again
Ingrid