Hip Diplaysia Support Group #3

[LauraK]

Hi Nicole

Thanks very much, it really helps to talk to people who are going through the same thing because up until now we felt as if it was only us! Everyone seems to know someone who has been through this yet we couldn't manage to speak to anyone as it's always a friend of a friend! We can take Harrisons brace off to change his nappy and to bath him but we almost feel as if this is cruel as he is reminded of what its like without it on but I'm sure wearing it full time is much worse.

I hope everything goes well for Scarlett on the 8th Jan, we are waiting for our first ultrasound scan appointment to come through and hopefully should know more then (I don't know about your health service but things have moved very quickly for us which is great and very rare for the British National Health Service!).

The hospital told us not to put any clothes under his brace but we might ask the question at our next appointment as his little legs are getting really red and I wonder if this is making him upset sometimes. At the moment we are just covering his legs with vasaline before putting his brace on and then trying to fit him into dungarees as thats the only thing we can fit over his brace (Winter here is so cold otherwise we would leave his legs exposed!).

I've read the thread back to 2005 and it's really encouraging to see the mums progress from where we are now to eventually getting the babys brace off - although to us this seems a million miles away it helps to read other peoples stories and to talk to people who are going through similar things at the same time.

Thanks again Nicole, best of luck to everyone, keep us posted.

Laura xx

[Rachelle]

Hello ladies!

I am sorry it's been so long since I posted, but things have been super busy with the holidays as I am sure you can all understand. I hope all of you and your babies are well!

Taylor is now approaching the 3 month mark since her spica cast was put on! It's hard to believe but it's gone by relatively quick. I have especially been suprised that she has done so well given her age. If you all remember she had it put on she was almost 19 months old! Good News: The cast comes off this coming Wednesday, January 2nd!!! Only 3 more days and I am very excited. Although she will be in a brace for 1 year, it will be good to be able to remove it for that 1 hour a day for baths and diapering if needed. I can't figure out what the name of the brace is but it's an abductor brace made for older babies and toddlers. Anyway, when we went in for Taylor's last cast change on November 22nd, the orthopedic surgeon said that she will wear the brace 23 hours per day for the first three months and then, his hope is that she will only have to wear it at night for the next 9 months following! I am trying not to get my hopes up, but this is the first time that I actually feel as though I can see light at the end of this journey!

How is everyone else?

MELISSA- How is Olivia doing?

NICOLE- Good luck for your appt. on January 8th! I'll be thinking about the both of you!

KRISTINA- How did Emily's Ultrasound go? I hope you received some good news!

KYLIE- Good luck with Zali's appt. on January 8th!!!

SUSAN- How is Sophie doing? I am sure you are very happy to have her brace free!

HELLOKITTY- I can totally relate to the ordeal of the spica cast. I hope you are doing okay with Savannah and let me know if you have any questions now that I am almost to the end of our 3 months with Taylor having one!

LAURA- I am so sorry to hear about your little Harrison. A lot of people had a difficult time understanding how hard it is emotionally. I acutally had people say things like, "oh, well my friends son was in a body cast and it wasn't that bad" or " well, at least it's not cancer". Well, for me in the beginning I knew that she wasn't going to die but I felt as if it was so horrible and like a piece of Taylor's childhood was being taken from her. It's okay to feel the way you do. Even almost 3 month into my daughter being in a spica cast, I still have my moments where it makes me sad. It's okay to feel that way sometimes! But, on the other hand it does get so much easier and if they take care of it now, hopefully your little guy won't have any need for future surgeries! Taylor was not diagnosed until she is 18months old and the treatment for her is a lot longer and the prognosis not as good. But, looking back I don't think I could have handled it when she was a newborn. I was a first time single mom who was sleep deprived and it would have been too much stress for me! Anyway, feel free to vent on this forum and ask questions. The ladies here are great and are here for you!

Has anyone had any trouble taking the brace off for an hour and then putting their babies back in? I was just wondering if Taylor is likely to be upset by having to put it back on after being out of it? Also, I was wondering if anyone thinks she will be able to sit in her normal car seat with the brace on. Right now we are renting a Britax Hippo Car Seat and it's not very well designed! Although I love my Britax Roundabout!

Alright ladies. Well I am going to sign off. I'll keep you posted after Taylor's cast comes off on Wednesday!!!

Below is the link for myspace page. There are plenty of pics on there of Taylor of course!

Take Care, Rachelle

http://www.myspace.com/rachelleandtaylor

[Suezt]

First of all ... Laura - humungous hugs to you! The first week or 2 is extremely hard and it doesn't help the moods when both yourself and bub aren't getting enough sleep. It took my Sophie about a week and a half to get back to her sleeping routine - I had to get a bit tough in the end cause I was just so exhausted physically and emotionally and let her cry some of the nights out. Sophie was in a brace for 7 months (from the age of 8mths - 15) we've now been out of the brace for 1 month. I had the opposite recently where I was scared to get the brace off cause we'd grown so accustomed to it

It does get better and you're right - it doesn't help that people around you say that you should feel good cause your baby doesn't have anything major wrong. That talk isn't fair at all. What you're feeling now is like a grieving process and you have every right to feel angry, robbed, hurt, teary etc. I think I spent the 1st 2 weeks sobbing my heart out. And angry at the unfairness of it all - when other 8 mth old were beginning the process of walking my little girl had to lie flat on her back and stare at the ceiling. She adapted so well - much better than her mummy and the brace just became a part of our everyday life! Feel free to chat and share and cry with us ... that's what we're here for. Hugs again!

Update on Sophie ... she is going extremely well without the brace. It's taken about 3 weeks or so to get back into a good sleep routine - but she's learnt how to roll again and that makes it easier for her to get unstuck in her cot now and she's enjoying her new found freedom! She's also started pulling herself up and cruising around the furniture - she started doing that within the week of the brace coming off! I was so amazed. Yesterday she started to let go for a second or so and is so proud of herself (as are we!).

Rachelle - how exciting that the cast is coming off! Yah! I hope the transition goes well. Sophie used to have 4 hours a day out of her brace and we did have a bit of a protest getting it back on but it wasn't too bad. All the best!

HAPPY NEW YEAR EVERYONE ... HOPE THAT 2008 IS A FANTASTIC YEAR FOR YOU ALL
love
Susan & Sophie
xxxx

[Kartier]

Hi all,
It has been awhile since my last post, I have been overseas. I have read all the news and wanted to say to Laura- It is hard to see your little one go through this but the other ladies are right, it does get better. Chloe was fitted to the Pavlik Harness at 4 months then at 6 months she was fitted to yet another brace call a Rhino brace and has been in this for almost 3 months. She has one hour off in the morning and evening. It is something that you go though the motions and say this is best for my baby. It does get better, I think it is a matter of taking each day as it comes. I think I cried for a week but then thought this will be a long process so I will make the best of it. Mind you I didnt think like that when she was first fitted to the harness. On the family/friend front- people didnt know about this conditon and would often just stand back and not say anything and do nothing at all. It was difficult emotionally for us as some of the comments were not helpful to us. As perviously mentioned.I also knew that Chloe was going to be fine in the end, just a little bump in the road for her but she would grow and be her happy little self, which she is to this day. I understand how you are feeling as do the other mums going through this-they are all so right, it will be alright. When Chloe was placed in her second harness I was so mad and upset over it, but I also knew that we were through the first stage of her recovery. Your little guy will adjust to the harness and learn how to move and be active in it. Chloe rolls and sits in her harness, which is great to see. Keep up the great work Laura, it will be o.k.

Suezt-Update on Sophie- Congrats on Sophie being brace free. Sounds like she is loving it.

Ladies- To all the wonderful mums, Wishing you all a Happy New Year.
Kartier and Chloe