Hip Diplaysia Support Group #3

[nicoli]

Hi all,

Just wanted to let you all know that even though I wouldn't have believed it Scarlett is pretty much back to her normal happy self after only a week in her harness. She is smiling and cooing again, has stopped screaming on the change table and is even sleeping in her cot again. I don't know if it is just me but she seems to be sleeping more soundly now???

Ingrid - I hope everything goes well at the orthopedic surgeon today. I can imagine how you are feeling right now. I think the anticipation of your baby going into a cast/harness is worse than the reality. All I could do before hand was imagine the worst. But once she's in it, each little step is encouraging. I don't know what it is like with a cast, but Scarlett just fits into her car seat with the harness on.

BubbaGirl - you must be exctied that Summer gets her cast off in 2 weeks.

I found breastfeeding a little hard at first - finding a comfortable position for both of us - but now it seems to be going well (luckily becasue I left it too late and Scarlett won't accept a bottle).

Do those of you who's baby is in a harness put clothes (singlet/jumpsuit) on under it? My physio said it was OK to thread it under the harness by undoing the chest strap even though the booklet I got said not to?

We go back to the orth surgeon tomorrow to check the ultrasound results for hip position.

Have a good week everyone.

Nicole

[bridee]

Nicole - I put clothes over the top not underneath. We had to go up a size so some things look quite big but I ensure nothing has collars as they are too big around her neck/face. Romper suits have worked good the short legs go to her ankles in the harness. I also love Bonds clothes as they are stretchy, before it got hot she was always wearing bonds pants/leggins and seperate top. I also found pants and tops better than all in 1, made her look less bulky.

In the hot weather we are having at the moment I just have her in a body suit with no legs. I'm noticing her feet are quite sweaty which is making the harness smelly but not much I can do about (I think).

[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

[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

[bridee]

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.