Hip Dysplaysia Support Group #2

[Natalie103]

Hi

Firstly, I'm so sorry for all of you who are going through this. My little girl's hip is not dislocated so we didn't need surgery. I cried for 2 days just with the brace (stupid, but I can't help it). I can only imagine what you are feeling.

My daughter was diagnosed with hip dysplasia at 5 months. She wore a brace for 6 weeks and I was so excited when the doctor said we could move to nights only as it was 99% fixed.

We went back for our six week review yesterday and it has reverted. It is now worse than before and she is now in a rhino brace full time for 8 weeks initially. I feel really guilty as we went away over January and her brace stopped fitting, so we could not put it on. She only wore it for 3 out of the 6 weeks at night. I think I've set her back. She was sleeping on her side and rolling over, feet in her mouth. So angry.

Has anyone else had their diagnosis reversed?

Nat

[Miss.September]

Hi everyone!

Naomi - Great letter. These surgeons mean well but so often they leave us in the dark about what they're thinking or planning. Hope you get some answers soon. Bailey's determination is awesome with his moving around. DD still can't sit up without us helping her and she's 10 months. You've got a great little man there!

Smarti - Hope DD2 settles in to her restricted movements quickly and the transition isn't too difficult for you all.

Thanks to everyone for all the well wishes and hope you're all going well!

Corelly

[MummyNaomi]

Smarti - you sound like an absolute trouper and you are handling all this so well. Glad things are going well so far, it sounds like your DD is lucky to have such a strong and caring Mummy!

Nat - sorry to hear your little girls diagnosis has worsened again, that must be devastating. I hope the next 8 weeks run smoothly for you, sending you hugs as it sounds like you need a big one right now, I hope we can be of some support to you.

Corelly - you better not leave us high and dry now that DD is out of her brace HAHAHAHA! Hows brace free life treating you guys?

I got a reply from our OS - not the reply I was hoping for I guess but he did say the xray in the brace was for checking that the angle is improving - I guess I will find out how at our next appt. He reminded me that Baileys treatment is a minimum of 6 months (which is fine as thats what he told me right from the start) and that "The cartilage around the hip takes time to mature and therefore 6 months should remain our gold standard". A good reminder for me, I dont want to have Bailey out of the brace early and find that the cartilage doesn't mature in the correct position and be back to square one and lengthen the treatment (or need something more agressive). I need to stop diagnosing Bailey based on what is happening to other babies (but I'm sure you guys know that when you hear another baby is brace free it makes you want yours free too !!). Our surgeon is the head of Orthopaedics at the WCH so I need to have faith and ride out this time. I doubt Baileys daily time in the brace will be reduced at our next appt.

Must go, DS is stiring from his nap

[Miss.September]

Hahahaha Naomi! I'm not going anywhere!! I figure if I've almost gotten through this, then it'd be pretty selfish for me to not want to help!!!!!

I'll be a bit periodic at the moment though - we're going to lose my nan any day now. Had a whinge in the boohoo room on here. Bear with me guys.

Corelly

[MummyNaomi]

Firstly, I'm so sorry for all of you who are going through this. My little girl's hip is not dislocated so we didn't need surgery. I cried for 2 days just with the brace (stupid, but I can't help it). I can only imagine what you are feeling.

Nat - I meant to say too that it really doesn't matter how agressive our babies treatment is, or who 'worse off' as such - as it doesn't change the emotion, or the heartbreak of what we watch our kids go through no matter what stage they are at. We all deal with the situation we have in front of us medically, but the emotional rollercoaster we ride is the same, so we all know what you are going through (and yep, I've cried for days at my DS's brace too)

[smarti]

Hello girls

Well, we have had 2 full days now of Phoebe in her brace after her little procedure in hospital.

I was so surprised, the first time we put her on the floor when we got home, she crawled straight over to the stereo to play with the buttons as she usually does! It nearly made me cry. Then we sat her up again and she toppled over backwards!

She is getting about fairly well (although she moves like a goanna!), but does get stuck in some funny positions and can't get herself out of them, causing some distress. She gets cross sometimes and sort of hits the brace. She also can't travel very far without getting tired as her arms seem to be doing all the work. I think she will have Madonna-like biceps at the end of all this!

I know we are very lucky that she is a well and happy baby but I just can't help but hate the brace! My husband says we have to love as it is fixing her. I know he is right, but still, I mostly hate it!

I hope everyone else out there is going OK this week. Each week, we are all closer to 'brace free' bubs I guess! (Not that I am an advocate for wishing time away)

Smarti x

PS: What is with all the dreadful names for these hip braces?! I think we should come up with some new, more attractive ones! Any suggestions??

[Miss.September]

Smarti - how wonderful Phoebe has settled into the brace so quickly. Gorgeous girl! I'm envious of your husband's positive approach. I wish we could all look at the brace that way! Deep down we all know what it's doing, but its so difficult seeing them with frog legs splayed out.

Naomi - Congratulations on the RAK! You utterly deserve it!

DD has settled into her daytimes really well, brace free. Nights are getting more difficult. She's so restless and cranky. She has a cold, and our routine is up the creek because my nan passed away so we've been spending a lot of time away from home and my nan was so important to me, she's probably picking up on my mood too. But I can't help but wonder if the brace is having an impact on her. It's now too small for her, but the surgeon said not to get a new one, it wasn't worth it. I am sooooo tired. The other night we were at the hospital with nan until 2 in the morning, and DD fell asleep at around 10pm, woke at 11pm and then was awake until 4am! Normally, she'll sleep anywhere. I'm hoping that once all this settles down again, probably after Monday, that she'll start using some energy during the day and she'll be tired at night and won't even notice the brace (or my mood!!!). I'm so grateful that my nan saw DD without the brace on. I visited her every week and she's listened to my heartbreak over it and helped me through it, so I'm forever grateful that the brace came off before she died.

Have a good weekend everyone

Corelly

[crosswig]

Corelly,

My condolances on the loss of your nan. I'm glad that your nan was able to see you little one out of the brace before she passed on. Especially important since your nan supported you so much through this last little bit when DD was in her brace.

Our thoughts are with you right now,

Crosswig

[MummyNaomi]

Corelly - So sorry to hear of your Nan's passing I hope you and your family are doing ok, am thinking of you and hope you are surrounded by love and support.

I agree with Crosswig, awesome that your Nan got to see DD brace free before she passed, that would have bought her a lot of joy to see that (and also to see your happiness because of that), so I hope that brings you some comfort.

Take it easy and I hope this time isn't filled with too much sadness, my sincere sympathy to you x

Naomi

[smarti]

Oh Corelly, so sorry to hear of your Nan's passing. What a sad time for you and your family.

It sounds like she was a huge support to you and your daugther. I have no doubt she will be geatly missed.

Take care

Smarti

[Miss.September]

Thanks everyone for the kind words. Once again, I marvel at the support on this thread. People are just so kind and generous and it reminds me that there are good people out there.

I've just been watching my DD drag herself around the room, getting quicker and quicker. She can't bring her legs together, but is determined to do her commando crawl and when she gets to where she wants to be, she rolls on her back and giggles like mad. So cute.

Corelly xx

[MummyNaomi]

Smarti - I totally know what you mean about not wanting to wish time away, but also wanting it to be the time when the brace comes off too! We are almost halfway - Bailey will have been in his brace for 3 months on Feb 23, and we are looking at 6 months of treatment, and I must say this time has gone quickly (as time does when you have a LO). Glad to hear things are going well with Phoebe so far, thats awesome and it makes it easier on Mummy too

Corelly - hope everything is going ok for your family right now, great to hear that DD is getting around the place - I love the sound of the 'giggle of triumph' when she gets where she wants to go - thats soooo cute

Bailey is really starting to get mobile - he is doing a backwards crawl, it really started properly last week, but now if I put him anywhere on the tiles, he crawls backwards basically by using his arms to push his body backwards - he will have awesome upper body strength by the end of all this. As I have socks covering his brace cuffs, it makes it easy to push himself back as the softness means his legs just slide back when he pushes himself back, he is pretty impressed with himself right now (as is Mummy and Daddy!! We've shed a few tears of happiness I can tell you!)

Hoping all the other babies are doing well

Naomi

[Miss.September]

OMG OMG OMG!!!! RAK'D!!!!!!!!

I can't believe it. Thank you to the kindest person out there that did it, nothing much nice ever happens to me and this is just amazing. THANK YOU xxxooooxxxooo


It's been a few days since I've been on, so hope everyone is travelling well. Naomi - yay for Bailey, he's just awesome! It freaks you out how quick they get so quickly!

My nan's funeral was yesterday, was tough, but we have an incredible family. DD was sooo good during the service, maybe nan was sitting beside her, holding her hand telling her to be good for us. Maybe.

Anyway, THANK YOU again for the kind person who RAK'd me. I hope something fabulous comes your way.

Corelly x

[MummyNaomi]

Sounds like you have a wonderfully supportive family there Corelly - glad DD was so good for you during the service, these LO have a wonderful way of knowing when Mummy and Daddy need them at their best!
Congrats - Someone must know you deserve the RAK - you are one of the most supportive girls I've met on BB - now you can request a funky avatar - Yay!

Off to finish dinner..... lamb roast - YUMMY

[Jesska]

Hi girls sorry i havent been on in a while.
we had Lahni's ultrasound and there was no improvement on her left hip.
So of corse i was really upset.... her left hip is still on 56.2%
So with the news of the ultrasound i was thinking another 6 weeks in the brace.
Took her to our doctor and he took her brace off... she is now BRACE FREE!!!
soooo incrediably over the moon, when i was leaving he said "how does it feel leaving this room without a brace/harness on) I said its the best feeling in the world!!! he just smiled and said Cya.
Its her Daddys birthday tomorrow, so he is over the moon
I have to get used to her not in the brace anymore hahahaha!!!!!
Ill be back later for personals gotta get dinner ready, have BIL coming for dinner tonight.

[Miss.September]

Oh WOW Jesska! You must have gotten such a shock! Go Lahni!!!! What has her doctor said about the no improvement? At least she's brace free!!!!!

Thanks again Naomi for the kind words. You're always so supportive of the tough times I've been through and the first to cheer me on. Thanks heaps. Hope your lamb roast was yummy!!!

DD is now getting cranky at night as the brace goes on. Wondered how soon that would start! I'm trying to tire her out during the day so she's too sleepy to be bothered by it, but not working!!!!!!! Last night she was still up and hyper-alert at 10.30, finally went to sleep and then up again at 1.30. I'm yawning today!!!

Hope everyone is well and babies are going great

Corelly x

[Jesska]

Hey Corelly I am so sorry to hear about your nan, (sorry I havent been online) so glad your dd was good for the service I thnk your right she was there holding her hand

As for Lahni, the only thing that needs improving is the depth of the sockets. So he isn't worried at all.
We go see him again in April and have an X-ray, then again when she is one, then our journey should be over
He also kinda knew that there wouldnt be any improvement over the last 6 weeks.
And I got a real shock today when he told me when he first saw Lahni he was really worried about her hips and was quite sure he would have to do an op on her.... he was very concerned about her, Im so glad he didnt tell me that when he first saw her though, I think I would have fallen apart, seriously! But we are all good now... 20 weeks later we are brace free
Its so good putting her in a dress without putting leggings on her!

I really wanna say thankyou to Naomi for your kind words today on facebook, it really ment a lot to me Chick, thanks again

[MummyNaomi]

Awww Shucks Jess - Yaaaaaay!! Awesome mate, as I mentioned on FB its just fantastic - enjoy! Glad to be supportive, I get so much from all the BB gals that I am stoked to hear that I am able to support you girls too!

Corelly - Sleep is over-rated hahahaha! How many more nights in the brace for DD? Do you think once she is brace free at night she will sleep better?

I went and put some tracksuit pants on layby for Bailey in size 1 which he should be this winter - hope we are brace free from May/June as expected otherwise I will be taking them back and get a bigger size LOL. I cant wait to be able to buy pants based on how cute they will look on him, rather than 'can I get them around the brace'. I am too scared to buy him any jeans or cargo pants as yet, as even a bigger size is no good with the brace, where-as at least tracksuit pants are stretchy. I was checking out the Bonds 'roomy' pants that WYSIWYG put me onto - if Bailey is still in his brace over winter I am gonna stock up on those - they should accomodate the brace with ease

Hope all the other babies are going fabulously!