Printable View
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!!!
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
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?:lol:
Susan & Sophie
xxxx
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!
http://users.tpg.com.au/nicoli/scarl...santaphoto.jpg
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
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
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
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!:lol:) 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
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
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
Hi All,
We had good news today, Georgie can come out of the harness for all but the night sleep and at Xmas we can stop altogether. We were hoping this was going to happen but never wanted to get our hopes up to much. I was a skeptical after the ultrasound, the report said her left hip was normal with 70% coverage and right mild displacia and 70% coverage. Given it was the same coverage but 1 classed as mild I didn't know if she was going to be able to come out but the Dr said he deemed them normal and we would just gradually wean her of the harness with night us only. So very exciting. She has just gone to sleep without the harness on, she was kicking her legs all over the place and moving up in the cot, annoying since I want her to sleep but I'm not complaining I loved looking at her discover her new freedom.
Hi Ingrid,
Summer had shorter more frequent feeds and I found too much solids filled her from wanting her milk. It is a bit of trial and error but you may find this the case for most of the time she's in the spica. Summer is only now (1st week out of spica) taking longer b/feeds. Try adding some prune juice to breakfast meals. Jasmin will probably get more constipated with less exercise and ability to pass wind. Just make sure you line the nappy/pad all around the inside to help stop leaks if it ends up being a runny one. Will most definatley have a strange odour. Take nappy off and put on her tummy so she can move a bit to help get things going.
All the best, Karen
Hi all
We go to have an ultrasound and to the orth surgeon ext Tuesday. Scarlett will have been in her harness for 5 weeks then. I am keeping my fingers crossed that there is some progress and I might be able to take the harness of for baths. Her harness is getting so dirty and horrible.
Here she is looking cheeky as usual:
http://users.tpg.com.au/nicoli/scarl...s/DSC01493.jpg
Nicole
Hi everyone,
you all seem to be so nice and knowledgable - would you mind me joining you? Well, actually I hope I will not have to join, but things don't look too good, and I am so scared and worried that I don't know what to do.
Our little Emily is 4.5 months old (will be 5 on the 27th) and her pediatrician just referred us for an ultrasound of her hips because of uneven skin folds on her thigh. She said that this is not always a sign of hip dysplasia, but better check it up. She could not find any "clicking" in her hips. She was checked at 1 week, and then every month untli now, and nothing worrysome was detected.
Anyone have any experience like ours? How did it work out for you? How worried should I be? How high is the risk that she has a problem? Oh I have so many questions, and now that Christmas is coming up, I will have to wait so long to find out. Our appointment for the ultrasound isn't until January 18! At that time, she will be almost 6 months old, and as far as I have understood from what I have read, that is a critical cut-off time for a harness to work.
I would be so grateful for any experience you might want to share with me.
Kristina
Hi all
We had Scarlett's ultrasound today and saw the Orthopaedic Surgeon. Her hip is getting better already. Her right hip has gone from 17% to 50% in 5 weeks and her left hip from 59% to 69%! How amazing what the body can do.
We gave her her first bath in 5 weeks tonight! She kicked around but her legs still stay out to the sides. I guess it will take some time after she gets the harness off for good to get back to normal. She feels so light and fragile without it on too.
Anyway our Orthopaedic Surgeon has referred us to the Hip Clinic at Westmead Children's Hospital as he is not a paediatric specialist. I am quite glad about that as they are supposed to be great there.
Kristina - you are most welcome. I got great support from these guys when Scarlett was diagnosed and I was so devastated. Scarlett was referred to have an ultrasound after the community nurse noticed uneven skin folds too. Her hips were not dislocated but her socket was very shallow on one side. I wasn't expecting bad news as the doctor said it would probably be nothing, so I was really upset when I found out. Are you sure you can't get in for an ultrasound sooner? That is quite a qhite to wait isn't it? Scarlett was 3 months when diagnosed so I am not too sure about what options there are for older babies. Scarlett will most likely be in her harness for 3 months or more. Anyway I hope all goes well.
Hope everyone has a wonderful christmas and new year...
Nicole
Nicole
Hi Kristina,
Dont want to scare you in anyway, but your case sounds a little similar to ours. Our little girl will be 8 months on the 27th. She had all the regular tests in hospital and by her pediatrician and nothing showed up. A lady at her childcare noticed the uneven skin folds when she was about 6 months (and also one leg slightly longer than another, which is another sign to look for). After going to the GP who said she didnt think it was anything but still referring us for an ultrasound, we went to the ultrasound only to have an x-ray done to find out she had a dysplastic hip (not dislocated just the hip not forming properly). Within a week of this lady approaching us at childcare (we are very grateful to her) we had seen an orthopedic surgeon. Jasmin is now into her 3rd week in a hip spica (and apart from the first 5 days is coping brilliantly). She will be in the spica for 6 weeks total and then in a Denis Browne Brace for 6 months.
I now it sounds terrible and hopefully there is nothing to worry about with your daughter but just know that babies are much better at adapting than us adults and it is better to catch it now and undergo a bit of 'suffering' than find it later when many more problems could occur.
I would also be pushing for an earlier ultrasound just to ease your mind. Most Benson Radiology places around here at least can fit you in within a week.
Good luck and hope ti all goes well.
Ingrid
Thank you Ingrid,
I did just as you said, tried to get an earlier ultrasound because I feel like I am going mad with worry. We got an appointment for Thursday morning, this way we will know for sure before the holidays. I live in Canada, but I think the system is pretty much the same here as in Australia. It is not easy to get an appointment to a specialist, but in cases like this they seems to be very nice and accomodating (thank heavens for that!).
I have tried to look for uneven length of the legs, but I can not see at least anything significant. Now that I look more carefully though, I can see that she clearly is using her right and left legs differently. She always turns over using her right leg, and when she is kicking around, she kicks more vigorously with right.
I guess I just need some fingers crossed on Thursday.
Poor little Jasmin, has she really got used to the cast? It seems almost impossible to me. How do you manage to get her around? I can not imagine that my Emily would fit into her stroller with a harness or cast.
Kristina
Hi guys,
We had Scarlett's ultrasound yesterday and saw the Orthopaedic Surgeon. Her hip is getting better already. Her right hip has gone from 17% to 50% and the left from 59% - 69%!
We gave her her first bath in 5 weeks last night! She kicked around but her legs still stay out to the sides. I guess it will take some time after she gets the harness off for good to get back to normal. She feels so light and fragile without it on too. Anyway the Orthopaedic Surgeon has now referred us to the Hip Clinic at Westmead Children's Hospital.
Kristina - we had the same thing also. Uneven skin folds and told that it was probably nothing as her hips were not clicky. We luckily found out at 3 months and she was able to go into a pavlik harness. I would also request an ultrasound sooner. My GP called the specialist once the results were in and he fit us in the same day as a priority. And time is of the essence with these things.
Anyway I hope everyone has a great christmas and I'll see you in the new year.
Nicole & Scarlett
http://users.tpg.com.au/nicoli/scarl...s/DSC01606.jpg
Hi Kristina. I too had a very similar experience. Sophie was 1st recongnised to have different skin folds and a leg shorter than the other at 4 months by our maternal nurse. She too had no clicky hips. We were then referred to our local GP and then a Orthopaedic Surgeon. I just wanted to give you some light at the end of the tunnel. It doesn't mean that your little girl will need to go into a spica cast - she may only need a brace. Sophie went into a Rhino brace and had to be in it 18-20 hours a day - giving her 4+ hours free time. Plus the brace allows the child to move a bit more. She was in the brace from 8mths of age - 15 mths (7 months altogether). She is now brace free since 3 weeks ago! They adapt so well to the braces - the 1st week is the hardest (more for mum! and sleeping!) - but they really are little troopers and the brace becomes apart of your everyday life. In fact it was a bit hard giving it up recently :D
Good luck Kristina. Hugs to you.
Susan
Hip Kids Australia - Braces - Rhino Cruiser ( a website that maybe helpful)
xxxx
Hello All,
Just hopping on here to let you know i am still around. I Hope you all have a safe and Merry christmas with or special babies. Little Zali is now crawling despite having to wear the brace at night which is a pain with the christmas tree up! We go back to the orthapaedic sur. on the 8th of Jan. Fingers crossed there will be no more brace!!
Take care and all the best for the new year.
xox
Haven't been on here for ages...thought I might just pop my head in.
Hey Suzet -great to read Sophie is out of the brace - I bet she's really close to walking. It's so great when you don't have to think about it anymore. Did you keep it?
Well I'm starting to get nervous already. My DD (spica cast 7mths to 10mths, rhino brace 10mths to 18mths) is having a check-up in April (she will be 3yrs then). Our surgeon at Westmead still hadn't ruled out surgery for the future so we're hoping this next visit will be the 'final' visit of her overall treatment and not a ....'no, I'm still not happy with the lack of growth' talk. Anyway, she's going great and all looks to be fine, I'm sure it'll be positive.
Hi guys - I need some advice - we are now allowed to take Scarlett's hareness off for baths and the physio suggested every second day and letting her stay out of it for hour so she can play. As we can't get in to see the Hip Slinic at Westemad childrens hospital until the end of January, I'm a little bit worried what to do when she's out of the harness. Is there anything I shouldn't let her do? Is it OK to put her on her tummy without it on? And what about rolling over? I just don't want to undo any of te progress she has made.
Kristina - how did you go on Thursday? I hope it all went well.
Nicole
Hey Nicole, Well done on Scarlett having her harness off for some time during the day. I remember when Olivia was allowed to do it....it was so amazing. Loads of tummy time is good. I just let Olivia play on the floor, practice rolling. Just dont push her legs together (am sure you know that), but if she does it herself then its fine. Enjoy her harness free time.
Olivia has been harness free for almost a month. Her sitting is great, she can now sit from lying on her tummy and shes rolling and almost crawling. Her legs still are a little bit apart, but not as much as before. Her head is not as flat either, phew. If I have another bub with DDH (crossing fingers I dont) there is one thing i will do and that is make sure they are sitting up on pillows or bean bags. livys head was so flat there for a while and the suggestion of a helmet came up a few times.
All the best to you for Christmas and have a safe and happy new year.
Love Melissa
My 10 month old daughter Savannah just had CR surgery, and is now in her pink spica cast. We are looking at 6 weeks in the cast, and then she will have to wear a brace 24/7 except for baths until she's 18 months. At that point, there is a 60-75% chance she will need an OR surgery to fix her left socket. I hope it fixes itself so we don't have to have the surgery. This is the hardest thing I've ever done. [link edited please read forum guidelines]
Hope to get to know everybody soon!
Dear All,
We were told at a routine 6 week check that our son, Harrison had a clicky / dysplastic right hip, and saw the paed last Friday. 2 days ago we saw the Orthapedic surgeon who confirmed the condition, but explained it was in both hips. He immediately put Harry in a hip abduction brace, and now almost 3 days on he is very distressed, feeding is difficult, sleeping is difficult, his clothes are no good, and friends and family insist that we should be happy that he does not have somtheing more serious - we arent asking for their sympathy but at the moment this sort of talk is no help to us.
I've searched the web and found this thread, and having now read your stories I understand that many more people are going through or have been through what we are. Having suffered with this condition myself as a child, spending almost 18 months in a combination of spica casts and braces I thought I would know naturally what he's feeling and going through, but this is not the case; we just feel helpless and so cruel to our baby boy who at 9 weeks has had little life experience, and know the next 9 weeks and possibly more are not going to be easy for him.
Any advice whatsoever would be very much appreciated to help us make his life in brace as comfortable, enjoyable and as tear free as possible. One thing I am struggling with is how some of you have managed to endure months of your baby in brace and stay positive; 2 days down the line I am very angry and very bitter that my baby is having to go throug this.
Thanks for your time; looking forward to reading any advice or comments.
Laura x
Laura - we all know exactly how you feel and even though you can't believe it right now - things will get better really quickly. My daughter Scarlett has been in a pavlic harness for almost 7 weeks now and at first I thought we would never survive it. She was 3 months old at the time so she had already become used to kicking around and had started to roll over. Putting her in the harness was heatbreaking as she was so distressed for the first few days. People now can't believe what a happy little thing she is smiling away at everyone. We have at least another 5 weeks (but maybe longer) in the harness and I look forward to getting her out of her dirty stinky harness! We put a jumpsuit undernieth the harness so it doesn't rub on her skin too much and it also absorbs sweat. After 5 weeks we were allowed to take the harness off every second day for a bath. I know you feel like things will never get better but they will.
An update on Scarlett - we are going to see Dr Little at Westmead Children's Hospital on January 8 so we will hopefully find out more about her progress and have a better indication of how long she will be in the harness for. I'll keep you all posted.
Nicole
Hi Nicole
Thanks very much, it really helps to talk to people who are going through the same thing because up until now we felt as if it was only us! Everyone seems to know someone who has been through this yet we couldn't manage to speak to anyone as it's always a friend of a friend! We can take Harrisons brace off to change his nappy and to bath him but we almost feel as if this is cruel as he is reminded of what its like without it on but I'm sure wearing it full time is much worse.
I hope everything goes well for Scarlett on the 8th Jan, we are waiting for our first ultrasound scan appointment to come through and hopefully should know more then (I don't know about your health service but things have moved very quickly for us which is great and very rare for the British National Health Service!).
The hospital told us not to put any clothes under his brace but we might ask the question at our next appointment as his little legs are getting really red and I wonder if this is making him upset sometimes. At the moment we are just covering his legs with vasaline before putting his brace on and then trying to fit him into dungarees as thats the only thing we can fit over his brace (Winter here is so cold otherwise we would leave his legs exposed!).
I've read the thread back to 2005 and it's really encouraging to see the mums progress from where we are now to eventually getting the babys brace off - although to us this seems a million miles away it helps to read other peoples stories and to talk to people who are going through similar things at the same time.
Thanks again Nicole, best of luck to everyone, keep us posted.
Laura xx
Hello ladies!
I am sorry it's been so long since I posted, but things have been super busy with the holidays as I am sure you can all understand. I hope all of you and your babies are well!
Taylor is now approaching the 3 month mark since her spica cast was put on! It's hard to believe but it's gone by relatively quick. I have especially been suprised that she has done so well given her age. If you all remember she had it put on she was almost 19 months old! Good News: The cast comes off this coming Wednesday, January 2nd!!! Only 3 more days and I am very excited. Although she will be in a brace for 1 year, it will be good to be able to remove it for that 1 hour a day for baths and diapering if needed. I can't figure out what the name of the brace is but it's an abductor brace made for older babies and toddlers. Anyway, when we went in for Taylor's last cast change on November 22nd, the orthopedic surgeon said that she will wear the brace 23 hours per day for the first three months and then, his hope is that she will only have to wear it at night for the next 9 months following! I am trying not to get my hopes up, but this is the first time that I actually feel as though I can see light at the end of this journey!
How is everyone else?
MELISSA- How is Olivia doing?
NICOLE- Good luck for your appt. on January 8th! I'll be thinking about the both of you!
KRISTINA- How did Emily's Ultrasound go? I hope you received some good news!
KYLIE- Good luck with Zali's appt. on January 8th!!!
SUSAN- How is Sophie doing? I am sure you are very happy to have her brace free!
HELLOKITTY- I can totally relate to the ordeal of the spica cast. I hope you are doing okay with Savannah and let me know if you have any questions now that I am almost to the end of our 3 months with Taylor having one!
LAURA- I am so sorry to hear about your little Harrison. A lot of people had a difficult time understanding how hard it is emotionally. I acutally had people say things like, "oh, well my friends son was in a body cast and it wasn't that bad" or " well, at least it's not cancer". Well, for me in the beginning I knew that she wasn't going to die but I felt as if it was so horrible and like a piece of Taylor's childhood was being taken from her. It's okay to feel the way you do. Even almost 3 month into my daughter being in a spica cast, I still have my moments where it makes me sad. It's okay to feel that way sometimes! But, on the other hand it does get so much easier and if they take care of it now, hopefully your little guy won't have any need for future surgeries! Taylor was not diagnosed until she is 18months old and the treatment for her is a lot longer and the prognosis not as good. But, looking back I don't think I could have handled it when she was a newborn. I was a first time single mom who was sleep deprived and it would have been too much stress for me! Anyway, feel free to vent on this forum and ask questions. The ladies here are great and are here for you!
Has anyone had any trouble taking the brace off for an hour and then putting their babies back in? I was just wondering if Taylor is likely to be upset by having to put it back on after being out of it? Also, I was wondering if anyone thinks she will be able to sit in her normal car seat with the brace on. Right now we are renting a Britax Hippo Car Seat and it's not very well designed! Although I love my Britax Roundabout!
Alright ladies. Well I am going to sign off. I'll keep you posted after Taylor's cast comes off on Wednesday!!!
Below is the link for myspace page. There are plenty of pics on there of Taylor of course!
Take Care, Rachelle
http://www.myspace.com/rachelleandtaylor
Rachelle,
Thanks so much for your advice; It sounds like Taylor is going through the same as me when I was a baby, my hip dysplasia was picked up at 14 months, with a combination of spica casts & metal braces for the next 18 months. I can not remember anything of it and whilst my parents were told I would need a hip replacement by the time I am 40, i've reached 27 and the hips are perfectly fine; and medical approach has developed so much I am sure, and hope that Taylor's only knowledge of this will be from photographs. Fingers crossed for Wednesday, we'll be thinking of you & look forward to hearing how it all goes.
If it is any help; Harrison is in a hip abduction brace now until his scan & 4 days in he really seems to have adjusted well with the times we take it off for nappy changes & bath time. Our problem is associating every time he cries with the discomfort of the brace and it is probably not the case!
We are able to get him in his car seat without any problems, but dont know if this is a good indicator for you as he is going to be a alot smaller than Taylor at only 9 weeks old.
Best of Luck for Wednesday I am sure it will be a special moment & a great start to the new year.
Laura x
First of all ... Laura - humungous hugs to you! The first week or 2 is extremely hard and it doesn't help the moods when both yourself and bub aren't getting enough sleep. It took my Sophie about a week and a half to get back to her sleeping routine - I had to get a bit tough in the end cause I was just so exhausted physically and emotionally and let her cry some of the nights out. Sophie was in a brace for 7 months (from the age of 8mths - 15) we've now been out of the brace for 1 month. I had the opposite recently where I was scared to get the brace off cause we'd grown so accustomed to it :lol:
It does get better and you're right - it doesn't help that people around you say that you should feel good cause your baby doesn't have anything major wrong. That talk isn't fair at all. What you're feeling now is like a grieving process and you have every right to feel angry, robbed, hurt, teary etc. I think I spent the 1st 2 weeks sobbing my heart out. And angry at the unfairness of it all - when other 8 mth old were beginning the process of walking my little girl had to lie flat on her back and stare at the ceiling. She adapted so well - much better than her mummy and the brace just became a part of our everyday life! Feel free to chat and share and cry with us ... that's what we're here for. Hugs again!
Update on Sophie ... she is going extremely well without the brace. It's taken about 3 weeks or so to get back into a good sleep routine - but she's learnt how to roll again and that makes it easier for her to get unstuck in her cot now and she's enjoying her new found freedom! She's also started pulling herself up and cruising around the furniture - she started doing that within the week of the brace coming off! I was so amazed. Yesterday she started to let go for a second or so and is so proud of herself (as are we!).
Rachelle - how exciting that the cast is coming off! Yah! I hope the transition goes well. Sophie used to have 4 hours a day out of her brace and we did have a bit of a protest getting it back on but it wasn't too bad. All the best!
HAPPY NEW YEAR EVERYONE ... HOPE THAT 2008 IS A FANTASTIC YEAR FOR YOU ALL :dance:
love
Susan & Sophie
xxxx
Hi all,
It has been awhile since my last post, I have been overseas. I have read all the news and wanted to say to Laura- It is hard to see your little one go through this but the other ladies are right, it does get better. Chloe was fitted to the Pavlik Harness at 4 months then at 6 months she was fitted to yet another brace call a Rhino brace and has been in this for almost 3 months. She has one hour off in the morning and evening. It is something that you go though the motions and say this is best for my baby. It does get better, I think it is a matter of taking each day as it comes. I think I cried for a week but then thought this will be a long process so I will make the best of it. Mind you I didnt think like that when she was first fitted to the harness. On the family/friend front- people didnt know about this conditon and would often just stand back and not say anything and do nothing at all. It was difficult emotionally for us as some of the comments were not helpful to us. As perviously mentioned.I also knew that Chloe was going to be fine in the end, just a little bump in the road for her but she would grow and be her happy little self, which she is to this day. I understand how you are feeling as do the other mums going through this-they are all so right, it will be alright. When Chloe was placed in her second harness I was so mad and upset over it, but I also knew that we were through the first stage of her recovery. Your little guy will adjust to the harness and learn how to move and be active in it. Chloe rolls and sits in her harness, which is great to see. Keep up the great work Laura, it will be o.k.
Suezt-Update on Sophie- Congrats on Sophie being brace free. Sounds like she is loving it.
Ladies- To all the wonderful mums, Wishing you all a Happy New Year.
Kartier and Chloe:D
Georgie has now been out of the Pavlik Harness during the day for 1 month and out of it altogether for 2 weeks (was on night use). At last Dr app we were told her hips was good enough to come out of the harness, the right hip was deemed still to have mild displacia however, with 70% coverage it was deemed stable and all that over time it would become normal. She does not need to see Dr until she is 1 (in another 7 months). For the past couple of weeks (probably since coming out of harness) we have noticed her right hip clicks. Not all the time it will do it once a few times a day - ie. after each sleep when she is playing it will click once. After some opinions - do you think I should be worried and ring Dr or do you think this is due to hip still having mild displacia. Dr didn't mention it would occur but he didn't really say anything apart from she can come out of the harness.
Hi Bridee,
I would definitely ring the doctor. I wouldn't walk to take the chance that your DD's hip is regressing any so I would call just to make sure still hearing her hip clicking is normal.
All the best,
Rachelle
Hey Dee,
I would call the doc as well...just to put your mind at rest. I remember that when Olivia came out of the harness during the day I heard it click for a few weeks, then it stoped all the sudden, but she remained in the harness for 16 weeks at night after that. Good luck and let us know the outcome.
Olivia is doing great. Its been a month now since she has been out of the harness completely and shes just started crawling.
Hope everyone is well
Love Melissa
Hi everyone,
Just and update on Harrison. We took him to the hospital on Monday as the hip abduction brace he had was really rubbing his legs and he had broken out in a rash. They have changed his harness until he has his scan and he is now wearing an Aberdeen harness which is worn over his clothes and he seems much happier. We have had confirmation that his scan is on Monday so we hope that they wont try to put him back in the other harness as he was so upset and life was so difficult! However, if the consultant tells us that this is the best for him we will just have to get on with it and do whatever is best for Harrison. So fingers crossed we will know more on Monday.
Hi Kartier - it's great to hear that Chloe is able to sit and roll in her harness, we have been so worried that the harness will stop Harrison from developing in the way that other children do, we just don't want him to miss out and want life to be as normal as possible for him.
Hi Susan - you must be so happy that Sophie is starting to walk around the furniture, it must be so fantastic to see and again it really helps us to hear this as it gives us hope.
I will let you all know how we get on with Harrisons scan on Monday, thanks again for all of your support!
Love Laura xxx
Hi Laura,
I was concerned about Chloe's development such as crawling and rolling as she was placed in her harness at 3-4 months old. Now at 8 months old and still in her harness she is rolling, moving backwards and pulling herself up to a sitting position. She is allowed 2 hours a day out of her harness and during that time she is standing up (with help) and rocking on her knees. I believe that she is on track with her development even though she was in the harness for the last 4 months. Chloe broke out in a rash from her first harness, the Pavlik Harness but we ended up getting some cotton material and placing it in the harness boots and under the straps. We now have her in the Rhino Harness which goes on over her clothes, she seems happier now.
Good luck for Monday's appoitment.
Hope everyone had a great Christmas and New Year.
Kartier
Hi all
We go to the new orth srgeon tomorrow. Wish us luck. The last doctor referred us on becasue he thought she might need 'exptended' management which he couldn't provide. Ayway all we can do is hope for the best but expect the worst. I'll let you know how things go...
Nicole
Nicole I hope all goes well tomorrow :hug:
So the news was not good but so far I am OK. We were told that Scarlett is getting to big for the pavlik harness and that she will be put in a dennis brown brace this Thursday. The upsetting part was that the doctor thinks she will require some kind of bracing until she is at least 1! I guess I had prepared for bad news but not quite like this. A few extra months I could have dealt with but this means 7 more month at least.
Has anyone else had experince moving from a pavlik to dennis brown? Does anyone have photos of what it looks like? Is it harder to fit into carseats/prams than the pavlik?
I hope she is OK becasue we are going away on holidays the day after and I don't want her to be miserable. I am trying to look on the bright side of things and think that at least she won't have straps around her lower legs or shoulders any more.
Oh well it looks like we are in this for a longer haul than first expected and I guess things could be worse but it is still a little bit of a blow.
Wish us luck for Thursday...
Nicole
Hi Nicole,
I am so sorry to hear that Scarlett's appt. did not go as well as you had hoped it would! I know it must be hard for you, but I am sure Scarlett will adapt to the change in braces just fine. I actually don't have experience with either brace. My daughter Taylor just went from a Spica Cast to a Hip abduction brace. She is now almost 22 months old and has been receiving treatment since 18 months old. So, only 5 days into her brace she is sitting up, rolling over, and has re-learned crawling, even in her brace. I was amazed at how quick she adapted to it! I know I haven't had any problems with Taylor fitting into her carseat now that she is in a brace. We have a Britax Roundabout which is fairly narrow, but Taylor's brace is flexible enough that she fits in it (and her stroller too). I don't know what the Dennis Brown Brace is compared to Taylor's, but I hope this helps. Taylor will be in her brace until she is almost 3 years old (due to her late diagnosis), but we are hoping that only these first three months will be 23 hours per day and then after that she can go to nighttime wear only (again, that's what we are hoping for). That means that once she is 2 years old, she will hopefully be able to go without the brace during the day!
I wish you all the best and hope this information helps some!!
LAURA- How did Harrison's scan go??? I hope well!
Rachelle