Hip Dysplaysia Support Group #2

Hi everyone,

Welcome Jackie, I hope that your appt on the 17th goes well, fingers crossed that your DD can be brace free from then on. What brace is your baby currently in- a Rhino Cruiser? It must have been such a shock to find out she needed surgery the very next day after your ortho review! It feels like we have waited and waited for this op.

Corelly, it won’t be long before your daughter is walking everywhere- it will be such a wonderful feeling to know that what you guys went though was worth it. I like the sound of this Rhino Cruiser brace, hope it’s the one Emma will have after her spica.

In regards to MCHN, I have already changed mine once, I agree, sometimes you do just have to smile and ignore there advice! My first MCHN told me to put Emma (a newborn at the time) in a room and let her cry herself to sleep, even if this takes hours! She then proceeded to tell me that I looked like I’d just walked out of a morgue as I was so pale!

PinkFairy, thanks for your message. Enjoy the planning of the birthday celebrations, that will be a good distraction from the upcoming surgery I’m sure.

The next post will be when I get home with Emma after her op. Thank you all for your support so far, I am sure I will need more of it in a few days time.

Take care.

Thank you for the welcome.

Hope today has gone to plan and everything went well?? It is such a tiring and emotional day. My daughter is in the Rhino and it is certainly doable and you get so used to it. She has now been treated for more than half her little life. It was a shock, as from the first ultrasound we were told mild and a brace for maybe up to 12 weeks and then when we go see the Paed Ortho, he did another ultrasound and said it is worse and he will book us in tomorrow.

Did your DD need open surgery?? What hospital did you go to?? How are you and your partner holding up?

Hope everyone else is travelling well?

Jackie

Furgurnie - I hope everything went smoothly and your little girl is recovering nicely. Hugs for Emma and her Mummy too. Once you are settled back at home, if you have any hints or tips about handling what must have been a very tough day, I would be most interested to hear them.

We had our surgery date confirmed today as the 11th August, and I feel sick just thinking about it. I am glad that we don't have to wait until the 26th August though as I would tie myself up in knots more than I already have. And the sooner that we start treatment, the sooner our baby girl will be on the road to recovery.

Does anyone know if we are allowed to ask on here whether anyone has used a particular surgeon and/or hospital?

Jackie - What a shock for everything to have happened so quickly for you. I feel like everything is moving so fast and I have had time to research and prepare myself as best I can. I can't imagine having had only one day to prepare like you did.

We have a big 1st birthday planned for our daughter's birthday on 8th August so I am trying just to stay focused on that for the moment. We also moved forward her 1st birthday cake smash photo session to last Wednesday in case her surgery was earlier than anticipated. I am flat out editing her photos from the cake smash...it's a welcome distraction at the moment as it's hard not to think about what is ahead for our baby girl. I do the occasional client photo session but this was my first cake smash and it was so much fun! I'm so glad that we were able to do that before her cast goes on as they will be great photos for her to look back on.

I hope that the precious bubs are all doing well and continuing to smile despite these challenges.

Donna

Jacksnjeff - know those nerves feelings well. Hope you get some great news at your next appointment.

Furgurnie - The rhino cruiser is a good brace, DD seemed really comfortable in it and when she came out of surgery when the cast was removed, I was very relieved to find her in it. It became my focus during that second time, I never considered how the plaster would be removed and that she'd have to be knocked out a second time, so I just sat, dreaming about what her chubby little legs would be like plaster free. You're sounding really positive so far, hope the op goes really well.

Karma1410 - Our surgeon was Mark O'Sullivan and DD's surgery was at Cabrini at Malvern. Lovely hospital, lovely staff (well all but one nurse, but anyway!). When the plaster came off we went to Mercy I think and the staff were wonderful there too. Oh, all in Melbourne, in case you're interstate. Have a wonderful 1st birthday with your daughter, sounds like the cake smash was fun!

Corelly - We are booked in at Cabrini Malvern too, so I am glad to hear that you were pleased with the hospital. Our surgeon is Marinis Pirpiris.

Can I ask why or how you chose Mark O'Sullivan as I have seen his name a few times now? I'm not sure how you ever know whether you have picked the right surgeon and I guess that is one of the unknowns that worries me. We haven't had a second opinion in terms of the treatment plan and I'm wondering now whether I should be trying to get an appointment with Mark O'Sullivan.

Mark was the surgeon we were referred to by the paed we were referred to by my ob. So a lot of referring going on! My GP though, her kids were also treated by Mark and she was singing him praises when she heard who we were seeing. He really is very good. But we had nothing to go off and just had to go with the gut instinct - mine was that I liked him immediately. We never sought a second opinion. In relation to Cabrini, and probably all hospitals, we were required to show the nurses our car seat, which was rearward facing, to ensure that DD would fit properly. We had to purchase a crotch extension strap for the seat to lengthen the belt so it would reach over the cast. We were told to get it from the RCH equipment distribution centre, off Gatehouse Street. As you drive into the carpark, before you go up the ramp, DH tells me its on the left. Cost us about $28, if memory serves. The strap needs to be fitted before your baby is discharged from Cabrini. Ask your surgeon if this applies to you because I don't know if it is relevant if your bub is forward facing. HTH.

Hello,

Corelly, it certainly is a very anxious and nervous time, these Dr's appointments. Have you been given the all clear for your daughter?? What sort of treatment did your DD have?? Right now, we just feel like it is never ending, and it gets so disheartening..............

Karma, it is alot of trust we place in Dr's and we also hope that we have made the right choice/decision. We were referred to ours by our GP that said she would use him if this was her daughter. I love our GP and hearing those words gave me comfort and then reading about him on the internet. If you have any doubts, I would probably seek a second opinion as no one loves or knows your baby like you do. Good luck!

Are there any Sydney siders on this thread or anyone that is being treated at The Children's Hospital, Westmead???

Have a good night,
Jackie

Jacksnjeff - we've been given the all clear. DD doesn't have to visit the surgeon until May next year and if all is still good then, visits will become every couple of years until she is 14. DD's story is that the midwife found she had a clicky hip at birth. Four days later the hospital paed found it to still be clicky so we were referred for an ultrasound at 2 weeks. The ultrasound people said she was too little to do then and DH and I already had the heebie jeebies about the paed so we left and waited to see my ob at the six week check up. We got him to refer us to a paed, saw him the next week and then it felt like it was rush rush over a handful of days. The paed couldn't feel anything was wrong, so he sent DD for an ultrasound where it was found that one hip socket was virtually non existant and the other was shallow. Into the surgeon's rooms, into the first brace, the Dennis Browne for 24/7 for 4 weeks with the weekly movement of the brace. At the end of that it was found that there was no improvement so she had an open reduction and into the cast for 6 weeks (we were lucky that the anethesist that the surgeon wanted to use was going on holidays so our cast came off at 5 weeks!!) The cast came off at the end of August and she was in the rhino cruiser until February where her hips were deemed "perfect". She's now 16 months, can sit, roll, crawl, scoot on her bum and walk while holding furniture and her walker. So that's our story!!!!

While I'm at it.......I want to really say thank you to everyone that has helped me here in this group. I had very little support at home. DH was at work, my most reliable family live over an hour away and my mum, normally always there for us, was on a six month overseas trip, leaving the week before DD was born and returning two or so weeks after the rhino cruiser went on. Without this group, I would've gone mad. So to those wonderful people who helped me in the early days, heard my tears and sympathised with the pain we were going through, I really thank you from the bottom of my heart. MummyNaomi, an enormous thank you to you, you are one special lady. So for anyone going through this now, I will be here, because I know how invaluable the tips that I got in those early days were and how hard it would've been for me without it.

Corelly x

Here's my little rant for the day:

I can't believe that after one appointment with the surgeon where they throw all sorts of bad news and statistics at you, you don't get another opportunity to ask any questions until the day of the surgery! I have a couple of questions that I really want answered in advance of the day (like whether they use CT scans for example, how many of these procedures the Dr has performed, whether her osteotomy if required will need pins and plates or will just be a shortening etc) and the receptionist keeps telling me that even if she leaves questions for the Dr, most likely they won't get answered. The only option she has given me is to book another whole appointment next week, just to ask a couple of questions that could be handled in 5 minutes on the phone.

Did anyone else have this problem? I am so uncomfortable handing my baby over for surgery without feeling like I am fully informed, but maybe it would be the same no matter which surgeon we see. Is this standard or have others had a different experience to this? Have you been able to speak to your surgeon by phone for any quick follow up questions?

I am just so frustrated and now feeling quite uncertain about our choice of surgeon. Perhaps though this would be the same no matter who we see. I just want to make the right decisions for my baby girl.

Sorry for the rant but I felt like I was going to explode if I didn't get it all out.

Oh, I forgot to ask whether any of your brave bubs have had to have CT scans? Statistically there is a 1 in 500 chance of a 1 year old developing cancer at a later stage from exposure during a CT scan, and that statistic is scaring the pants off me. I really want my daughter to avoid a CT scan if at all possible but I can't even get an answer from the doctor as to whether she will need one. I might be worrying for no reason. Aaaarrgghhh!!

Karma - we had a wonderful receptionist named Sharon at Mark O'Sullivan's and she would answer anything and even put you in touch with other parents who Mark had treated. Unfortunately, Sharon left but I'm sure he would've made sure that there is someone else there to throw questions at.

DD had an MRI one week after the op, it was apparently the best way to see if everything had worked, and then so many x-rays after that, that I've lost count. I know what you mean about the cancer fear, but I just had to grin and bear it and hope that through this she has earned brownie points in the health department. The MRI didn't take very long at all, if that is some consulation to you. At RCH, they gave DD a sedative which helps them go off to sleep because they need to keep still.

Maybe make that extra appointment just to get some answers and have that piece of mind that you know exactly what is going on. Write everything down before you go, if you do.

Thanks Corelly. You are such a wealth of information and I really appreciate it :-)

I actually rang after my last post and spoke to I think Lisa at Mark O'Sullivan's office. She was so, so lovely. Unfortunately though we can't get an appointment next week before our surgery date and then the surgeon is on holidays. Even if we could get an appointment, Lisa indicated that we wouldn't be able to get a surgery slot until late September which is too far away given that our little girl is turning one already.

If it is an MRI or X-Rays I will be okay with that as I know that there aren't too many options in a case like this. It's more the CT that I am concerned about. I would feel so much better if I could just get an answer to that question from our surgeon. It looks like we will have to book an actual appointment next week with our surgeon just to get a few answers. At least then I might feel a little bit more informed.

Thanks again for the great info and advice that you have provided. :-)

I'll keep my fingers crossed for you Karma that it is an MRI you get sent for. I'm surprised that the receptionist doesn't know what your surgeon prefers to do after surgery. Feel free to PM me at any time too, I can give you my details if you PM me.

Hi guys, thanks for your messages.

Emma is doing really well, we got home yesterday afternoon. It is so good to be out of the hospital!

We went to Monash Children’s Hospital in Clayton and our Dr was Ton Tran (head of paediatric orthopaedic surgery). Our experience was a positive one, the Dr’s and nursing staff were fantastic.

Emma had an open reduction as expected. Her spica cast is plain plaster which we will write all over and keep once she’s out of it. She was first on the list, so we didn’t have to wait long until she was called for her op. She handled the 6 hrs fasting without any grizzling, such a good girl!
The anaesthetist used gas to put her to sleep (my husband held her in his arms whilst this was being done) and then used a block which made her numb from the waist down (helps with post op discomfort apparently).

The op went for 1 ½ hours. During this time my husband and I got a drink from the cafeteria, bought Emma a big balloon and then got our pram and car seat and took them to the ward so the OT’s could modified them if needed. The time went really quickly (thankfully) and before we knew it we were being called to see Emma.
She recovered really well from the anaesthetic, she was a little pale and swollen but otherwise good. She had a bottle as soon as she was awake.

The following day Emma had a MRI to confirm that the hip is in correct position, she screamed in the beginning as the loud banging noise frightened her, but actually fell asleep 5 mins before the end! I was in the room with her. We were discharged after this. Car seat was modified (like Corelly, we had to buy an extension strap $20), pram was ok as is.

Since being home Emma is much more settled, she slept solidly last night despite having nappy changed 3 hourly. Tonight we’ve decided 4hrly should be ok.

Karma1410, I hope our story helps you to prepare for August 11th. I’ll be more than happy to tell you anything else you want to know. The cast is heavier than I expected and was quite awkward to begin with, do you know if your daughter is getting fibreglass or plaster cast? Hope her 1st birthday is a blast. What is a cake smash by the way?! In regards to your post about wanting more questions answered by the surgeon, I would book another appt if it would put your mind at ease.

Corelly, I was told that the cast will only need to be on for 6 weeks not 12, yay! Emma will then most likely go into a Rhino Cruiser :p

Does anyone know how to put photo's on this site?

Hope everyone is doing great.

So glad to hear everything went well furgurnie! Sounds like you have an amazing little girl. I hope the next 6 weeks go quickly and she (and you!) is coping ok. Was your hospital stay only overnight? We were told 3 nights - perhaps that could be because my DD is older?

We are going through Childrens Hospital at Randwick and our surgeon is Dr Angus Gray, we were referred to him by our Dr who has worked with my mum for around 20 years!

Im back at uni this week and im over it already!!! Hope you all have a great weekend :D

Hi PinkFairy, yeah everything went unbelievably smoothly for us. We really are blessed to have such an easy going little girl. She was a little unsettled at times today but we think it was due to frustration as she can’t kick her legs anymore. She doesn’t seem to be in any pain, but her incision site is a little tender when we brush past it putting her nappy inside the cast.

We were also told our stay would be 2-3 days, but Emma recovered really well and my husband and I were pretty happy and confident with caring for her in the cast so there was no need to be in hospital anymore. The worst part of the whole experience was sharing a room with 3 other babies recovering from surgery, so neither my husband or I got much sleep (not to mention Emma).

What are you studying at uni?

Furgurnie - great to hear Emma's surgery went really well. Her surgery sounded exactly like my DD's except we waited a week before we had the MRI. That's fantastic that the cast only needs to be on for six weeks :dance: look after your own back in that time, these munchkins get heavy suddenly in these casts! Unfortunately it is against BB guidelines to post photos on here, other than in a signature, but a lot get around it by making facebook friends. I think you can link to your facebook albums or an off-site photo share site, like flickr, but you'd have to ask one of the administrators how. We too stuck by the "rules" with nappy changing for the first few nights, but for us, DD ended up more unsettled after that so we stopped and let her go right through the night. It worked fine for us.

Hi Everyone and a big welcome to all the new Mums joining the forum

Pink Fairy - How are you going leading up to the surgery, it must be difficult with it getting closer, but I bet you wouldn't mind it to be all over and done with too. Re child care, my DS fortunately came out of his brace a month before he started child care, but the centre told us they have had infants previously with braces and the carers were fine and more than happy to look after the little ones no matter what, glad your centre is supportive :) I hope DD enjoys her upcoming birthday!

Furgurnie - glad to hear Emma's op went well (and Mum and Dad did well too by the sounds of things). My DS was only ever in a brace and we were very fortunately not having to go through surgery or spica's but nevertheless its an emotional journey isn't it? Agggghhhhhh a hospital room with 3 babies - not the most restful place for poor Emma to recover, glad to hear you got to go home quickly!

Madcat - hehehehe poor DD worried about her legs being chopped off :) What an adorable munchkin!

Karma - Welcome and like the other parents, I hope you find some support in this forum, I certainly have, especially in the beginning when it was all an emotional blur and we were adjusting to life in a brace etc. I dont think anyone else can truly understand how you are feeling unless they have lived it too. I hope Aug 11 comes (and passes) quickly for you and it all goes smoothly, it will be a tough day no doubt!. Sorry you are still trying to get some questions answered, I cant believe your surgeon cant just take 5 minutes to return your call!! Grrrr

Jackie - good luck for your appt in August. Our orthopedic surgeon was quite conservative also, but now that we are brace free (and all is very well hip wise), I am very glad. My DS was in a brace for 6 months as the angles of his acetabular needing correcting and compared to others in similar situtions it seemed our treatment was quite long, but I guess I'd rather be in the position we are now (HUGE IMPROVEMENT) and we dont have to go back to a check up for 12 months were originally we were expecting 6 monthly xrays so we are very very thankful to our awesome surgeon, so have trust in them :) What brace is your DD in now?

:

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MummyNaomi, an enormous thank you to you, you are one special lady.

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You're a dag Corelly, but I love ya anyway! :D Like Corelly, I have had HEAPS of support from this forum and now that our journey is over (and hopefully stays that way), I hope I can somehow replay the support by being here for others - and yes Karma, Corelly is a wealth of DDH info :)

Hope all your bubs are happy and healthy and keeping away from all these winter colds :)

Naomi

LOL Naomi - one of my rare mushy moments :P

Hi Ladies,

Hope you are all having a lovely start to the weekend. I was until my worst fear became a reality. Just had a spider on my neck. Alot of tears and shaking was involved and thank goodness dh was home. I now have major heebie jeebies. Yuck!

Karma - That is a great attitude to have about the date being set for the 11th. The sooner it is the closer you are to be able to put this all behind you. That was probably the only positive about having our surgery the next day, so I couldn't stew and stress on it. But the major negative as you said is that I couldn't prepare for anything or ask any further questions. That is fantastic that you will be able to have a big 1st birthday celebration prior to casting. Our DD was 1 on the 19th July, but we delayed her party and she will be sharing a big party with her sister who will be turning 4. I am hoping we get good news on the 17th August as their party is 22nd August.

Corelly - Fantastic to hear that your DD is in the all clear. What an amazing feeling that must be for you, your partner and your bubba. With your brace, did they reduce time in it, or go straight from wearing it full time to not wearing it?? I am hoping and praying that next appoint we go to night time only, but am not holding my breath. At our last appoint in May, he got her x-ray up and went though it with us in detail. Her right hip was at least half the size of the left and it was also very obvious the major difference in her left ball joint to her right. I guess I am just worried with how different it was that I am hoping for too much and setting myself up for disappointment. I hate the not knowing, if only I could be told that by the end of AUgust your journey will be over, but I logically know that we are waiting for bone to grow and ossify and no-one knows how long it will take.....

Karma - Sorry I am all over the shop today, but I did feel unprepared for my dd surgery cause that was taken out of my hands. If you could get an appointment I would do that. As Corelly said, write them down and take them with you. My brain goes to mush and I have to write it down to remember what to ask.... It is very frustrating when you do only have a couple of questions that could be answered in minutes and they won't do that. We have never had a CT or an MRI. We have had 2 ultrasounds and 2 x-rays. She also had the arthogram whilst in surgery so that would be another x-ray.

Furgurnie - Fantastic to hear how well everything went with Emma. They are such little troopers aren't they. From a selfish point of view, I sometimes think it is harder on the parents than the kiddies. My DD cast was purple which was a shock. I always just assumed plaster was white. lol That is fantastic to hear that she is sleeping well too. Both my girls have always been fab sleepers, but when Isabelle was in the cast, we were up to her every couple of hours, which unfortunately for us lasted the whole time in the cast and the first couple of nights in the brace. We did try everything but to no avail. I did hear one tip after we came out of the cast and that was to have pillows filled with bean bag balls for the babes to lay on in bed, as it contours to their whole body and supports it where needs be. This may or may not work.... Also great to hear that Emma will only be in the cast for 6 weeks. Woohooooo!!! Hope everything is still going as well as it can.

Pink Fairy - Great to hear you're in Sydney too. We went to The Children's Hospital at Westmead and they were fantastic as I imagine the one at Randwick to be. Goodluck with yours. What date were you booked in for?

MummyNaomi - Thank you for the welcome. Fab to hear that you're at the end of your journey too. I cannot wait to hear those words. I keep telling myself that it is a good thing that he is conservative, but I just want this over. I feel completely cheated with my second bub and feel we and she has missed out on alot. I feel ungreatful saying that, because in the grand scheme I know it could've been sooooo much worse. With your brace, did they gradually reduce time, or did you go straight from full time to nothing?? The brace DD is in is pretty much the Rhino Cruiser but not as thick. I am pretty sure I heard our surgeon say that it is an inhouse design. It is a velcro strap about an inch thick that goes around the waist with an upside down metal V that has an inch thick velcro strap around each thigh. Hope this makes sense.

Hope everyone is enjoying their weekend, it is quite a nice winters day in Sydney.

Warm wishes
Jackie

OMG, I am so sorry for the essay ladies, didn't realise how long it was....

xx

LOL Jacksnjeff! Don't apologise!!!

As for time in the brace - we went from being told it was going to be 8 weeks, and then once we hit that and were told it had to stay on, I think I stopped asking. We had monthly visits after that. When we were told to make changes, first it was allowed to come off for an hour morning and an hour in the afternoon, and for baths. Then, during summer, we were told if we wanted a day at the beach, don't fret, leave it off for as long as we were there. Then when it could come off for good, we had to leave it on for nights for three weeks and then it was OFF FOREVER!!!!!!!!! So it was on from early August to early Feb all up.

Jackie - Bailey wore his brace 23.5hrs per day - every day for 6 months. We took it off and gave him a bath each day (and had a 30 min swimming lesson once a week in his brace free time but we weren't allowed to paddle his legs or anything - only movement that he made). Then we had an xray when he'd been in the brace for about 5 months and the surgeon said everything was going really well and to take the brace off at the 6 month mark and come back 3 weeks later to be xray'd and see how he was going brace free. So no, unfortunately the time in the brace didn't lessen, it was always the 23.5 hrs. We cheated though, the day we were supposed to take the brace off was a sunday, we took it off a day early so we could enjoy our first weekend brace free - so we were one day short of 6 months.

I know what you mean about feeling cheated, I still feel a bit that way, I'm annoyed and angry that half of my babies first year (and his first xmas and birthday) were spend in the brace. To be honest I think I'll always feel a bit this way. It's unfair and it just plain sucks! And yes, our lot in life could be worse, but you know what, this is the situation we have to deal with and at times it feels like the end of the world. Don't dismiss you feelings, they are completely vaild, and why shouldn't we all wish we had brace free babies with perfect hips? Its not too much to ask. Hang in there babe x

Hey guys,

Today was another great day, I am SO happy that things are going good, I just hope it stays this way. My mothers group got together and bought Emma a Lamaze doll and some cute clothes to go over her cast. It’s so lovely to know people care. :)

Corelly- my back is already aching because of the weight of the cast, need to start doing stretches!! Last night 4 hrly nappy changes went well, but I agree, we will probably get to the stage where she could go all night. I hate going in to wake her, she looks so peaceful! Did you just use newborn nappies inside the cast or a poise pad (or similar) plus nappy overnight? Was the cast pretty tight by the end of her time in it? It’s a pity we can’t put photos up, Emma looks quite cute in her spica! I’m happy for people to look me up on facebook if interested, just search Rebecca van Geyzel.

MummyNaomi thanks for your message, it is an emotional time to know that your child requires treatment to fix their hips. After the 12 month check up, how often will you see the ortho surgeon and for how many years?

Jackie- I agree, this process can be harder on the parents than for the child. Emma seems to have adjusted quite quickly, but it breaks our heart to see her in the cast and not able to sit up, roll over or simply kick her chubby little legs. Yes we are lucky that she is still sleeping well, I don’t cope well at all with no sleep! We use a small pillow with beanbag balls, it does a great job of making her comfy.

We used newborn nappies on the inside of the cast with all the tabs cut off with a larger crawler size nappy over the top of the cast. We found that we could actually reach the inner nappy at the back through the top of her cast which made it a lot easier for us to get it into the correct position. The cast got a little bit tighter as she got bigger, but nothing major, she was only in it for five weeks and we didn't have any growth spurts in that time.

Wow you guys have been busy chatting! Feel like i cant keep up with you all!

Good Luck to Furgurnie, Sounds like you have already left for the operation, sorry i didn't get back to you with an answer to your question earlier.

"Madcat, how long after your daughter's first op did you find out that she needed another? Was she in a lot of pain post op? How long did she stay in hospital for?"

Kira was 9mths when first diagnosed, she had closed reduction and tendonectomy, surgeon said one year later that she may need further ops before she goes to school. It was always in the back of my head at every apptment, fast forward to now, she is 5 and has just had a salter osteotomy. Still not sure if she will need further procedures. When they are small it is hard to project how their hips will look, even one year on, so as parents of kids with DHD we all need to be mentally prepared for the possibility of our lovely ones having surgery. Its a long process, but it is worth every minute to see them being the best they can be. oops go carried away... Um yes she was in quite alot of post op pain, took awhile to work out how much Morphine to give her to keep pain at bay (I nearly took out a couple of nurses in the battle, and i am normally very calm!!) But they did redo the op four days later because bone graft moved out of position, i dont think this helped on the pain scale. we were in hospital a total of eight days.
The best part is: Someone asked Kira if she liked being in hospital, to my shock, she said it was great! She must have blocked out all the yucky bits and only remembers being able to eat as much ice cream and jelly as she wanted!
So as traumatic as it is for us, our little ones seem to have some AWESOME inbuilt coping strategies!!!!!!

Hip Hip Hooray!

Yep I have totally lost track!

I have just read Furgurnies home from hossy post, Glad everything went beautifully for you, and i hope the next six weeks goes quickly.
:thumbsup:

Hey great idea bout facebook, maybe we could set up a group page? It would be so good to put faces to you all.

Hi everyone,
Olivia has moved from her Pavlik harness and is now in a DB at 8wks old. I feel like we just got used of one brace and now we've got to learn to adapt to this one too. I've noticed that she's getting red marks on the very top of where her thighs meet her bum from the bar but the orthotist said as long as it doesn't look like it's going to break the skin then it's okay. I don't understand, she was only fitted last week and her next check up is in 4 more weeks, I just don't see how it's not going to dig in even more as she grows??? She also rarely sleeps much anymore during they day unless she's lying on my chest and only sleeps for just a few minutes in her bouncer, on her tummy or in her bassinett during the day and I'm really struggling to get anything done.
Does anyone have any suggestions? Sorry for the real downer of a post :( I hope you're all well xx

Liddy105 - my DS was in the dennis brown and we found that he ended up with some blisters where the brace cuffs rubbed, one of the girls from this forum suggested using socks - I cut up some adult knee high socks, discard the 'foot' bit and use the long tube bit thats left to put around the brace cuff, as the socks are usually elasticised they should stay on the brace cuffs pretty well - does that make sense?

We also found that we needed to put a rolled up blanket under DSs legs when he was laying down as otherwise his legs were perched in the air a little, and we also used to put a rolled up nappy on one side of him so he wasn't lying completely on his back, he seemed to get a bit uncomfortable and wakeful unless we did that. Also I bought a toddler pillow for him (quite flat) but the extra cushioning seemed to improve his comfort and he slept much better.

The first week he was in the brace was a bit of a shocker for sleep from memory, hopefully Olivia gets used to it soon and starts to sleep a bit more for you :)

Hi girls,

We ended up having a pretty crappy weekend. Isabelle reacted to her immunisations and has been fighting temps of 39.5 all weekend and she has an ear infection the poor munchkin. I am thinking we have turned the corner today. Hope everyone else had a good weekend?

Furgurnie - Fantastic to hear that everything is going well. It sounds like you have a great attitude. It took me about a week to stop feeling sorry for our situation and come around. Maybe this was partly cause everything was so rushed. Pretty much the whole time Izy was in the cast, it near brought tears to my eyes looking at her. But, she is such a happy baby that it truly didn'y seem to worry her. I think in the end this also made it easier for hubby n me. With the nappies we too used newborns and completely cut all the tags off and trimmed all around the nappy leaving about 1cm outside the padding of it. We also put a size bigger over the cast. Psychologically for me, I think it made it look "prettier".

Madcat - That is what I am finding, that her hip journey is always on my mind and when will it end. From things I have read and heard, I believe that quite possibly we could be having check ups until the teen years, which is along time to carry this around. How remarkable that your 5 year old has the coping stategies for everything she has been through. What a precious girl....

liddy105 - The exact same thing happened with our DD's thighs. Her skin had just started to break. We had to use a fungal cream to prevent any infection and gauze. We used quite a bit of the gauze to give extra protection. After about 2 weeks everything was totally fine and haven't had to use anything since. In regards to sleep, my DD was 6 months of age and was starting to get active. We were told that her sleeping would decrease as she isn't using as much energy as her movement was limited. I imagine this would be a bit different with an 8 week old. We tried various things similar to what mummynaomi also mentioned. I found it was a case of trial and error and I gave each different thing a couple of times to see if she adapted to it. Good luck with the sleeping. I so don't cope with no sleep and both my girls are massive sleepers. When Isabelle went into the cast we had crap sleep pretty much the whole 6 weeks and then into the brace after the first few nights she has gone back to normal sleeping.

Hello to everyone else and hope you're all going well.

Warm wishes
Jackie

Thanks for the tips :) So far her skin is okay under the leg cuffs but she's getting red grooves from the bar on the very top of where her leg meets her bum at the back (so not from the cuffs). I feel like this might mean it's already to small for her, I don't see how things will improve during the next 4 wks between appointments as she's only go to keep growing? Sorry for the confusion guys, it's hard to explain in writing.

Hi my dd had the db brace and I don't think the bar touched her at all, we always had a follow up appointment a couple of days after brace fitting (RCH MEL) for any follow up concerns, if you don't have a follow up I would give them a call and explain your concerns and see what they say. We were using cloth nappies which gave a lot of padding and coverage but also meant bar very curved so less likely to come into skin contact.

Thanks so much wysiwyg, I was wondering whether the bar was meant to actually be pushing into their thighs like it has been. We were also using cloth nappies but had to switch to disposables because the bar is so close to her bum I can't even feed them through.
I rang this morning and am going in this arvo to the RCH Melb for a checkup. Thanks for your help!

No worries, we specified about cloth so they bent the bar more so could fit, not sure if you are doing this but we used to find easier to put her on front to feed through and she got extra tummy time.

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No worries, we specified about cloth so they bent the bar more so could fit, not sure if you are doing this but we used to find easier to put her on front to feed through and she got extra tummy time.

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We also changed nappies face down, MUCH easier to get the nappy on (with a few flips from back to front). We'd start with Bailz on his back, clean up as much as possible, then flip him over to clean from the other side and then feed the nappy through, flip back over and do up the nappy - we soon became experts at it :)

Oh great tip on the nappy change, I gave the tummy flip a go tonight and it worked great :D
We had our visit at the RCH this arvo and they ended up needing to bend the bar a bit and also got us to practice putting it on and off while we were there which was really helpful, I wish they'd done that at the first fitting!

Glad the tummy flip worked - I found that when CJ had the brace taken off I was so used to the flip that I initially kept flipping her even though didn't have the brace any longer!

Hey everyone,

One week down, 5 to go!
Emma is still doing really well in her cast and Sean and I are becoming pro's at this nappy business! We are now doing 6 hourly nappy changes over night and this seems to be working well.

Jackie- how is Isabelle now? Ear infections are nasty, hope she is all better soon.
I am definitely surprised at how well we are coping with Emma being in a cast, I prepared for awful days and nights with an unsettled and frustrated baby, but have been pleasantly surprised. The hardest thing I find is the extra weight I have to carry around now, my back is already quite sore.

Liddy105 – glad to hear that your visit to RCH was very much worthwhile. Hope your daughter is more comfy now in her brace and hope that her legs heal quickly.

Madcat – good to see you on facebook. Have you got pics of your daughter in her cast on there?

Hope all is well with you all.

Great Work on the nappy sharing ideas guys, back in our nappy days we just puddled through, and never thought of the flip idea! Wish we did, it would have been loads easier!

Kira is having her cast off tomorrow!!!!!! Hopefully!?! We cant wait, we are all over it. Back and arms need a rest! Cant wait to see her walking again.

Well wishes to you all :)