Hip Diplaysia Support Group #3

[BubbaGirl]

Hi everyone,

Summer had her spica changed last Thurs and the xrays looked good. The spica will definatley come off in 5 weeks on Monday (3 Dec). She now has hot purple fibreglass instead of plaster and her legs are not positioned as wide as before. It isn't fun to see your baby go under anesthetic and come out at the end of it but it was a little easier this time. She actually woke on her way back from surgery and the nurse came to the waiting room asking for Summer's mummy with her crying in her arms. She settled pretty quickly.

Summer has been fitted for her brace and will go into that when she comes out of the spica. I can finally see a light at the end of the tunnel (well this bit anyway) and am starting to perpare myself for her to be in the brace for 6 months. My specialist initially said 3-6 months so will not set my sights of her coming out of it for her first birthday in March.

Kartier - my heart bleeds for you as I know how disappointed I was to learn that Summer needed the spica then brace for 6-9 months all up (when she was already nearly 6 months of age). Our bubs are also that bit older and we are seeing their development delayed which is the hardest thing of all. I'm sure you're like me in that you wonder what DD would be doing at this point and compare her to other babies at her age. Its a normal thing I guess. I know its hard to see now but when she is older you will look back and be glad that the problem was fixed. I do wonder why the treatment (ie. spica or brace and length of time) seems to be so different for all DD's. There just doesn't seem to be much consistency from people's stories. Hang in there and keep up the good work.

Susan - thanks for the tips on the clothing. I think I'll just wait to see what position her legs will be in etc. Summer will be in the brace until she's 1 or more which at this time is a little hard to accept when their development is so delayed. I am hoping that Summer will learn to roll again, crawl and maybe walk in the brace. What is the rhino brace?

Just wondering if anyone is being treated in Syd by Michael Bellemore (head of orthopaedics at Westmead). Might try and catch up on our next visit in Dec.

Does anyone have any experience of what to expect when DD goes from spica to brace (DB orthosis with waist and leg straps)? Also can anyone recommend a good high chair that works with the brace?

Keep on soldiering on everyone. Everyone seems to have their good and bad days which I think we would have anyway if they weren't in their spicas/braces. Our kids are very special and we all deserve a pat on the back for all the special care required.

Until next time...

[Rachelle]

Hello again Ladies!

Sorry it's taken me so long to respond to all of you. Taylor is doing so much better. I think that she actually was reacting poorly to her pain medication because once I took her off of it, she was back to being happy most of the time. She still gets frustrated, but it's been a couple of weeks since her surgery and she is now starting to pull herself on her stomach to go and get toys. She still pulls her hair when she gets really angry but I usually catch it before she gets too frustrated. She is also a really good talker so I am encouraging her to use her words instead of screaming. I have a bean bag chair which has worked great. I was also able to adapt one of those highchairs that straps on to the normal dining chair. I just had to unstitch the side and she sits in it perfectly up at the table. I also have a small stool that she sits on. I put it up against the wall and then her dad adapted an old coffee table and I am able to push that right up to her. I am finding it's the perfect spot for coloring, puzzles, books, and other activities. I also found that she fits in her stroller still, which is so much lighter than the wheelchair, so we are able to get out of the house and go for walks. Being that Taylor is 19 and 1/2 months old, with the cast on she weighs 30 pounds, so I am happy that the stroller works and that I don't have to carry her everywhere.

For those of you who have had babies in spica casts, what do you do to get the urine/ammonia smell out of them? Taylor's diaper has leaked a couple of times and I've used vinegar/water and then baby powder but it still smells badly of ammonia. Any suggestions would be appreciated.

KARALEE- Welcome to BB! You are in my prayers. I know how hard it must be as a new mom to hear that something is wrong. This is not your fault. When my DD was diagnosed at 18 months old, I thought the same thing: maybe I accidentally dislocated her hip when I was playing with her? Just know this is a developemental issue and there is nothing you could have done during pregnancy to prevent it. From what I've heard the risk factors are 1) first born child (because your uterus is a lot tighter and the babies don't have as much room) 2) Having a girl (because they have more of the hormone, Relaxin in their systems 3) Having a baby born breech. So, all this to say, you couldn't prevent this somehow. Don't blame yourself. Allow yourself to go through all of the emotions (you will be up and down) but it does get better!

KYLIE- Good luck with your ortho. visit on the 8th!

SUSAN- I hope that you and Sophie are feeling better.

KARTIER- Sorry to hear about your DD's visit to the specialist. I can't imagine how hard that must be for you, to think that you are at the end of the road only to be told that you have to deal with it for another 6 months. I'm sorry! You will be in my prayers.

DEE- Congrats on your good news from the specialist!

BUBBAGIRL- I am glad to hear that Summer's cast change went well.


Well, I'll talk to you all soon. Only 2 more weeks and then Taylor will get her first cast change. She'll go under anesthesia again but I anticipate it will be easier this time than it was for her surgery.

Take Care All!

Rachelle

[bridee]

Karalee - Just wanted to reaffirm what others have said - it is not your fault. My daughter was discovered to have hip displacia at 6 weeks. She was put in a Pavlik Harness. Like you I was concerned about I would be able to cuddle her and hold her and breast feeding. Well I really did not need to be concerned. In terms of holding cuddling just minor adjustment but very easy, people have actually commented it is easier to hold her with the harness on than without (she's less flopping in the back with it on). What we missed the most was not being able to bath her but she surprised us and still loved the sponge bath we were giving her. In terms of breastfeeding, in the lead up to her being fitted with the harness I got a supply of expressed BM ready in case I had troubles and had to bottle feed her. In the end didn't need it I really did not need to change my position (she has always been a excellent feeder). If you have any questions PM. My journey with the harness has not been as long as some (has been fitted for 7 weeks and looks like will only be needed for another 5 weeks) but if I can assist would be happy to.

Melissa - Question for you, do you know the % of coverage Olivia has. Just interested as Olivia was fitted at about the same age as Georgie and followed a similar time frame 6 weeks full time and now up to time out of it (Dr said can be a couple hours a day). Dr said has probably after the next 6 weeks she won't need, having read your time frames I wonder whether it will really be the end.