Hip Babies / Hip Dysplasia

[Alias]

Helen, an extra trip to Dublin will be worth it to get the cast off early!! What hospital are you at in Dublin, I don't remember? E is in Temple Street, we're back for a checkup on the 19th (?) to see if she needs more surgery and if she can take the brace off. I'm actually looking forward to it, I'm so sure she's going to get the all clear... so if they give us bad news I'm going to be gutted.

Claire, hopefully you'll get in quickly to see the cardiologist, and you can get moving if there's a problem. But hopefully it's not her heart, the poor dear has too many other things to worry about. But yay! Only a few more weeks in the cast!!

 

[hel_5]

I know i dont care how many trips i have to make up there as long as the thing comes off!! Plus DH has booked a hotel so we can go up the night before AND Lucy is staying at her friends house the night before

We are at Crumlin, but we are going to ask the nurses if we can attend our consultants clinic in cork - only an hour drive instead of 3 1/2 hours - for the check up (and i know he has a clinic there in 3 weeks time - not that im stalking him or anything! )

 

[hel_5]

Ok stupid question alert here!

Alias does Ellie wear 'normal' clothes in the brace? does it go on the outside of her clothes? just trying to work out what she can wear when the cast comes off!!

 

[Alias]

Ok stupid question alert here!

Alias does Ellie wear 'normal' clothes in the brace? does it go on the outside of her clothes? just trying to work out what she can wear when the cast comes off!!

Not stupid questions at all! The brace goes outside her clothes. We take off the brace every time we change her nappy or clothes. On her bottom half it helps that the clothes is stretchy, so leggings, tights and tracksuit bottoms.

For the first few days I couldn't get any trousers on her easily (her right hip was too stiff) so I used cut off adult knee socks as leggings. They were handy when the cast came off in hospital because I didn't have to move her legs much to get them off. I've heard that the brace can irritate the skin if there's nothing between it and their legs.

You might need bottoms in a size up, as the spread of the brace makes some of E's trousers a bit short. But don't get too much yet. I'm glad I waited to buy much, because originally I wanted pale pink and white leggings to go under all her dresses, but because she's bum shuffling those got really dirty really quick, and now we're all about the darker colours

Another thing, for the first week or two she was much more comfortable in the brace than out of it. She was just so used to having the support there, and it was probably a lot more comfortable as the muscles built up again.

You must be so excited to be getting the cast off, I'm still thrilled to be free of E's! I brought home her beanbag and table from the creche this week, I figure I'm going to give them to someone else who needs them once we're sure we're done with them.

 

[xxClaire_24xx]

aw fab news that the cast is coming off so soon!!! im so happy for you

yeah Ellie is doing great and like you say hopefully its not too serious but they say thats its easier to control a heart problem than her being allergic to anesthetic???

 

[xxClaire_24xx]

a few wee pics of Ellie pie exploring in her cast

 

[Alias]

Aw, look at her go It's great to see how little it affects them, isn't it?

Helen, How did the cast removal go? How's Emma doing?

 

[hel_5]

WOW she can really move in it.

The removal wasnt the greatest experience!!!! she hated every second of it - the inside of the cast was and the first thing both me and DH said when it came off was how fat her legs are its really ackward she hates having her nappy changed and been taken in and out of the brace. Her skin is manky she spent the whole of the journey home scratching her legs so all the dead skin came off but also she has really scratched her skin. We bathed her last night and it was like we had put her in a bath of molten lava - she SCREAMED but she did kick both of her legs about which was lovely even if she was screaming (Lucy was also in the bath with her hands over her ears shouting take her out take her out!!)

We have been told to keep her in the brace as much as possible - 23 hours - and not to take it off when we change her nappy - but i just dont know how thats possible?!?

As we were going the nurse showed our x-ray to a consultant (not ours as hes on hols so we have to go back to see him) and he said both her hips are in, but that we wont get the all clear til shes 2 and she may need to have surgery when shes 2 - i knew all of this but i really didnt want to be told it as we were walking out the door

At the mo the brace is SO much harder than the cast was but im guessing it will change?!?

 

[xxClaire_24xx]

WOW she can really move in it.

The removal wasnt the greatest experience!!!! she hated every second of it - the inside of the cast was and the first thing both me and DH said when it came off was how fat her legs are its really ackward she hates having her nappy changed and been taken in and out of the brace. Her skin is manky she spent the whole of the journey home scratching her legs so all the dead skin came off but also she has really scratched her skin. We bathed her last night and it was like we had put her in a bath of molten lava - she SCREAMED but she did kick both of her legs about which was lovely even if she was screaming (Lucy was also in the bath with her hands over her ears shouting take her out take her out!!)

We have been told to keep her in the brace as much as possible - 23 hours - and not to take it off when we change her nappy - but i just dont know how thats possible?!?

As we were going the nurse showed our x-ray to a consultant (not ours as hes on hols so we have to go back to see him) and he said both her hips are in, but that we wont get the all clear til shes 2 and she may need to have surgery when shes 2 - i knew all of this but i really didnt want to be told it as we were walking out the door

At the mo the brace is SO much harder than the cast was but im guessing it will change?!?

yeah shes a mover lol

aw sounds like things are harder than you expect when we get the cast off eh, my consultant has booked Ellie in for a hot baby massage to get off all the dead skin cells on her legs when her cast comes off, little madam, over at rainbow house xx

 

[hel_5]

Yeah im also just having a bad day - lucy woke me up at 5.30 and has been a little madam since, DH is at work all day and night - wont be home til 11pm - and although this is normal its really hard and upsetting having to bath emma with her screaming SO much and im working late tomorrow so i really need to have a good nights sleep!!!!!!!!!!!

Sorry for moaning - but it feels good!!!

 

[Alias]

Aww, sorry it's so hard at the moment Helen. It will get easier! Her poor legs are probably very sore when she moves and it will take some getting used to having them back.

I don't see how you can change her nappy without taking the brace off, although maybe if you just undo the waist strap you can shove the nappy in the back? But she can't wear trousers then? Strange, we weren't told that at all. Did they say her hip is at least stable? Surely they wouldn't take the cast off if it wasn't? I'm pretty sure the 'guide' we were given said that if you're told to keep the brace on 24 hours, you can still undo one strap at a time.

E hated her baths at first too, I ended up getting in with her. But she got over it quick enough, about a week. It helped hugely when she could sit up properly in the bath. Also make sure you're using a really mild soap and moisturiser, as the skin is probably sensitive. We only bathed her every few days, but moisturised her legs more often.

As for more surgery, all the way along they've been telling us to expect more surgery. I think they have to tell you that so as to not get your hopes up. She's still got over a year until then and there's a lot of hip growing between now and then! I'm still really optimistic that we won't have more surgery, only 3 weeks until her checkup, and I really hope the brace comes off during the day then.

 

[xxClaire_24xx]

hi all so its now 5 weeks today til we go and get the xray and the yes or no to Ellie getting her cast off, im not getting my hopes just incase its a no, however they have no idea how they would change her cast as they dont want to put her under GA until she has seen the heart specialist

Im worrying too about more surgery but we know that we are a def when she is 2 or 3 as they were reconstructing Ellies hip rather that stabalising it but we are just taking it as it comes xx

 

[hel_5]

Emma just enjoyed her bath!!!!!!

After thinking about things yesterday i decided to get in the bath with emma - please note for future reference a 28 year old (who could do with losing a few lbs) a 9 month old AND a 4 year old (didnt want to be left out ) do NOT fit well into a normal sized bath it was a disaster AND emma was still dirty when we got out

But today i got out her old bath seat (meant to be used up til 3 months) but shes more upright in it, i put her to play sat in it this afternoon and at bath time put her in it, after a few tears she was HAPPY

It feels like it is finally getting easier!! But the brace is already dirty

Hope everyone is doing well

 

[Alias]

Yay, thrilled that Emma liked her bath. It makes such a difference.

Our brace straps are now a dark grey colour, I was half wondering could I throw it in the washer on gentle Certainly the velcro is much less effective than it used to be. Although just as effective at snagging my tights in the morning on the way out the door as the cast was But we're hoping we've only got a few more weeks...

 

[hel_5]

phew im glad im not the only one!!!

Took her swimming today and she loved it

Yeah i think they design these things so that they snag your tights - obvisously a man created it!!!

 

[hel_5]

:wave:

how is everyone doing??

we are going well emma now fits into her highchair with her tray on and loves 'feeding' herself - food goes everywhere and i always find food in her brace but shes happy

hope everyone is doing well xx

 

[Alias]

E has her checkup tomorrow, no doubt I'll be awake half the night worrying about it... Keep your fingers crossed for us in the morning!

Otherwise, we're seeing a little bit of weight bearing... but really only when I get her standing at the side of the bathtub. I have to help support her, but I can see her getting stronger. This morning I brought her up and brushed our teeth, and then she stood at the side of the bath and said 'all gone', very sad there was no water in it. But so thrilled to see her on her feet, even for a few seconds. She even made a bit of effort to pull up from sitting on my leg, although I had to help with that as well. I've got a BP check later this week and I'll bring her with me to get her ears checked out. If she hasn't got an ear infection (STILL! 3 antibiotics later) then I'll bring her back to the pool over the weekend. The swimming did seem to make a difference and help get her hip to move more, so I hope it could help with strengthening the muscles as well.

Helen, I found a puzzle piece from the creche in E's brace the other day

 

[hel_5]

i dont know how they get the stuff down here!!! fxd for tomorrow, let us know how you get on

 

[Alias]

I spent all morning trying to entertain herself in the hospital but.............

YAAAAAAAAAAAAAYYYYYYYYYYYYYYYYY!

The brace is gone, totally gone, not even needed for bedtime. We are unofficially done. Her hip is looking good, her femur head is still got some growing to do but overall the expectation is she probably won't need any more surgery. No guarantees obviously, but that's as good as I had hoped to get today and better since I was expecting brace at nighttime. He also said we could stop her boots and bar for her feet, which we were still doing at night (although without the bar because of the brace). For the first time since she was 5 days old, we can put E to bed without any contraptions or casts on her body!!. This is bloody brillant to say the least. I'm so very happy, so excited, just thrilled.

We're to bring her back in June with her little brother/sister who will be given a quick check too. And he promised the baby will be ultrasounded and then xrayed at 4 months just in case, to be certain this isn't missed again.

 

[hel_5]

Wahoo!!!!!!