Hip Dysplaysia Support Group

[Pipsqueak]

Dear Jo,
Thanks for your info and answers to my many questions. I'm comforted by what I've read from everyone here, thanks! I'm a lot less anxious about it now, well as un-anxious as I think I'm going to get really! We've got what we can organised already and the two grandmas are ready to go with minding the other 3 cherubs on Monday and Tuesday. Have spoken to the hospital this afternoon and Lucy is scheduled third for surgery, so may not be in overnight, just wait and see at this stage. I think I'd prefer to be in there overnight for them to be able to give any pain meds which may be needed.
We bought her a hot pink bean bag and triangle pillow yesterday, and a few friends of my mum-in-law have offered their sewing prowess should we need fitted covers for any of her extra pillows and equipment.
So almost ready to go! Just have our nine yr old's sleep over party to hold now, which I'm glad I have that to keep my mind a little occupied over the weekend.
Cheers everyone and I'll keep you posted about how it all went.
Cheers,
Pip.

[Beatrix]

hi everyone,

Now i dont know if my DD has this problem yet but we have just had her two week check and she has a clunky left hip. 2 out of the 4 rotations with her lig made it click.
I have also noticed that sometimes i am sure i have heard a joint click but i am not sure which joint it was.

So now we are off to the GP and we go from there.

[Haileys Mum]

Hi Pip,

I hope your daughters surgery went well yesterday. Let us know-when you get time!!-how it all went


Hi Beatrix,

From what i understand the earlier they get onto the problem the quicker and usually easier they can fix it. Good luck with the GP.

[Pipsqueak]

Hi all,
Lucy had her hip surgery on Monday, and it went well. The operation itself took less time than expected as the hip slipped back into position much easier than anticipated and the hip ball has a nice secure fit in the socket, which is very good news. Lucy has a bright pink plaster and fibreglass cast from her chest to her ankles, and a small wound in her groin from the surgery, which didn't need stitches. After she woke in recovery, she was very distressed and took a long time to settle. We were expecting this but it was still awful to try and comfort her, as nothing really worked very well. She was totally disoriented and uncomfortable and in a bit of pain no doubt too. She did calm down after a few feeds, loads of cuddles and some more pain relief. Thankfully, both DH and I were able to meet her in recovery, as we could see this was definitely going to be a 'tag team' parenting situation, with both of us taking it in turns to hold her and rock her as best we could. Lucy eventually fell asleep and slept through her MRI, where we went after recovery. Lucy's doctors were able to reassure us that it had all gone well, as the MRI showed a very good fit between hip ball and socket. We also arranged to stay overnight up at the hospital, as I was concerned about pain and discomfort during the night, especially being an hour from the hospital in case something happened.
Monday afternoon Lucy was sleepy but she did get her smile back late in the day, amazingly! She did give us both really serious 'death stares', as if she was saying 'what have you let them do to me', and she'd look from one of us to the other, as if to say 'make her/him stop this!'. We spent the afternoon trying to juggle her as best we could, talking to the physio and occupational therapists, and learning how to do the whole nappy thing with a plaster cast in the way! So far only one leak to report! The first night in hospital she went well considering what she'd been through. She was a little more restless, and was quite frustrated when she woke and realised that the cast was still there. She tried to crawl out of it, and even grabbed the bars of the hospital cot and tried to pull herself out of it. Poor little thing, it's upsetting to see her frustrated and not be able to explain it to her, like you would an older child. It will just take her 'getting used to it' everyday until she stops noticing it as different and adopts it as normal, which to me sounds so un-normal. She growled at me in the early morning when she realised I wasn't going to, or couldn't take it off her, and then called out for Daddy. Of course he was at home, so she was crying and I had a tear in my eye and a lump in my throat while trying to comfort her. Thankfully she fed really well, albeit really awkwardly, all night. She was no doubt catching up on the feeds she'd missed out on!
We came home yesterday (Tuesday) around lunchtime and slept the whole afternoon. Last night was better still in terms of sleep, I think it'll be a case of trying lots of sleeping positions til we get one that works well for us all.
So for the moment we are tired but the immediate anxiety about the surgery has passed. We are just now learning to adapt! Last night Lucy actually crawled across the bed, dragging her stiff legs behind her! I didn't think she would be able to crawl in it, especially when I saw how awkward and heavy the cast was. I was very surprised when she did that last night! Thanks to you all for your kind thoughts and messages and prayers for Lucy and our family. Warm wishes,
Pip.

[LauraK]

Hi everyone.

Just to let you all know that we have our appointment to go back to the hopsital on Wednesday for Harrison to have an x ray - we should find out from here whether he needs to continue to wear the brace at night time. We really hope that it's good news but we are trying not to get our hopes up.

I remember our first visit to this group, we read so many stories of people who had gone through everything we were about to experience & were encouraged by the many highs (and lows) which eventually ended in success. I hope that we are heading the same way and have the finishing line in sight. I got through this 25 years ago, and thank God that modern day awareness and treatment for the condition has meant that Harrison has not had to spend the 18 months in plasters, splints and braces that I did.

We will let you all know how we get on on Wednesday; for now, our hearts go out to you all and we wish you all the very best of luck.

Laura xx

[Haileys Mum]

Hi Everyone,

Hailey went back into hospital yesterday and her plaster off after 6 weeks. Dr was happy with her, she now in Rhino brace for ?how long.

Hope everyone is going well.

[nicoli]

Hi all

I am going back to work next next week after almost 9 months off with Scarlett. In case I don't have much time to write on here - our next appointment is 6 May. I am crossing my fingers that Scarlett can have her brace off for good, but will not know until after the xrays. I'll let you know how it all goes.

Hope everyone else is going well.

Nicole

[Pipsqueak]

Hi Jo,
How is Hailey going with her brace? I hope that it has been an easy transition for her, and for you guys too! Does your brace go under clothing? I'm not realy up to speed with names of braces yet.
Best wishes,
Pip.

[Kell4]

Hi girls....well here is Chloes Story


I was in the bath with her around 4 months old when I noticed a clicking sound, my heart sank as I new what was coming, I took her to the health nurse who checked her hips and she told me to take her straight to the doctors, so I did that, the GP had then straight away rang the Marter Childrens Hospital to get a referal, that afternoon they rang me for an appointment the next week

November 25th 2008: Ortopedic Appointment, 2day Chloe was fitted with a Pavlik Harness, was a bit upset seeing her go into it, but she done well....

November 27th 2008: Chloes first hip ultrasound, results: Angles 35 degrees and 40 at the time her left hip was the worst....

December 9th 2008: Ortho. App. still no change

December 16th 2008: X-ray appointment

December 19th 2008: Ultrasound Appointment

December 23rd 2008: Orto. App. Left hip Ok right hip not Ok

Chloe then developed a really bad rash (not good) its been 9weeks (27th Jan 2009) rang the Marter and they told me to take the harness off her, as the rash comes first at this stage.... She cant move her right leg, kicks her left like anything

January 30th 2009: Ultasound and X-ray, still not better, something about soft tissue in the right hip socket

Well she is now 6months and 3weeks her next Ortho. App. is on Tuesday the 3rd of Feb. really not looking forward to it, they (drs.) told me last app. that the next step would be a spica, I just feel like its my fault and I just want to cry all the time when I look at her.....I feel so bad and its only going to get worse when the day comes for surgery and cast..... Thats Chloe's story for now..... Take Care All xxxxxxx