August 05 2009 update for chelsea now 2yrs and 2months old

Nicky - posted on 09/10/2009

Quoting Tara:

Hi Nicky, We are seeing Dr Walters at Ipswich Hospital. Apparently he is one of the best because when we were at RBH they knew him well and said she was in very good hands. He's about 70 years of age though. Olivia was put in the Rhino brace yesterday and has to have it on for sleeps. How did Chelsea handle the sleeping and what did you do? Because Olivia was in the Von Rosen Splint for the first 5 months of her life, I thought she would be fine with this brace because she would be sleeping the way she did back then. What I didn't count on was the fact that the first 5 months of her life she didn't know any different. Now she can move around and is sleeping on her stomach and side and to go back to sleeping on her back is a major issue. She slept for three hours and then let out an almight scream and wouldn't calm down. I had her laying on me for a bit and she started to calm down but kept whimpering everytime she moved. The worst part is that Olivia doesn't cry - I know that sounds weird but she just never did. She would let out whimpers or if she did cry as soon as you gave her dummy and kitty she would stop, so I have never had this problem of not being able to stop her from being so upset. It's heartbreaking. How do you cope?

hi tara, im sorry i just read you last message.  i hope olivia is coping better in the rhino brace now. chelsea has always had to sleep in her braces and where them 24hrs a day except for bathing. i found that she had a very disturbed sleep as whenever she would try and roll over she couldnt and would always wake up. chelsea is now just over 2yrs old now and unfortunately is in a very bad habit of waking up every 2 - 3 hrs every nite without a doubt! needless to say that i do not get much sleep at all grrr!  the other problem i am finding is that chelsea is pretty much toilet trained for wees only at this stage but i still put nappies on her all the time except for her nappy free time because i am worried that if she goes back for more surgery which looks likely then she will have to be put back in nappies while she is back in the plaster spica cast again. so i feel if i fully toilet train her now that she will be too upset to be messing herself in a nappy again if this makes any sence? this DDH thing really puts your babies a little behind hey! i dont want to put her in child care cos im worried she may get hurt or pushed over, toilet training gets put on hold and i dont want to put her in her own bed yet cos when she rolls in her brace it is very hard and takes alot of room to do it so im worried bout her falling out of bed. plus the fact she wakes every 2-3hrs a nite so its easier to keep her in a cot beside my bed still. i also felt like i missed out on her younger months whilst in spica/brace cos i could cuddle her properly or tickle her, or put on all her pretty clothes and shoes that i had for her, but i know all this will be worth it in the end. please keep in touch with your daughters progress, i hope she is sleeping better for you. for some reason my doctor would let chelsea wear the rhino brace, even after i asked, instead he put her in a chunky metal brace that goes from her armpits to her knees and weighs a tonne and i would get covered in bruises from her just sitting on my lap. best wishes and keep in touch. take care nicky

Nicky - posted on 09/10/2009

Quoting Tara:

Hi Nicky, We are seeing Dr Walters at Ipswich Hospital. Apparently he is one of the best because when we were at RBH they knew him well and said she was in very good hands. He's about 70 years of age though. Olivia was put in the Rhino brace yesterday and has to have it on for sleeps. How did Chelsea handle the sleeping and what did you do? Because Olivia was in the Von Rosen Splint for the first 5 months of her life, I thought she would be fine with this brace because she would be sleeping the way she did back then. What I didn't count on was the fact that the first 5 months of her life she didn't know any different. Now she can move around and is sleeping on her stomach and side and to go back to sleeping on her back is a major issue. She slept for three hours and then let out an almight scream and wouldn't calm down. I had her laying on me for a bit and she started to calm down but kept whimpering everytime she moved. The worst part is that Olivia doesn't cry - I know that sounds weird but she just never did. She would let out whimpers or if she did cry as soon as you gave her dummy and kitty she would stop, so I have never had this problem of not being able to stop her from being so upset. It's heartbreaking. How do you cope?

Nicky - posted on 09/10/2009

hi katrina, thankyou for sharing your story. we had our appointment with chelsea's surgeon but unfortunately there is no change. her hip is still shallow. she now is having a break from her brace for the moment until her next appointment in november. chelsea still has a limp which is more noticable when she is tired. she also has talipes? which is club foot in the old term, and her foot points outwards and makes it very hard to put a shoe on that foot, it hurts her. one minute he says she will need surgery again, next minute he tells me to take a break from her brace so i am very confused! i think i will be quite upset if her surgeon tells me in november that she needs surgery after all this time because she has been wearing a brace fulltime since dec last year and we all know there hasnt been any changes and november here is summer and to put her in a plaster spica again in summer is so cruel. i wish that if she was to have surgery that he would have done it while it was winter! i never relised how long and ongoing this would be! i have 4 children, tyson 14yrs, texas 12yrs, trae 10yrs and chelsea 2yrs. chelsea is the only one with hip problems but the other 3 kids were from my previous marriage. she was laying across my belly the whole pregnancy and they tried turning her at about 30wks gestation but wouldnt turn. i ended up having to have a cesarean birth with her. it was my first cesear and was very complicated as the cord was wrapped round her neck a few times and i hemorraged badly after and required 4 blood transfusions. i have DDH but it wasnt picked up until my late 20's as i thort i had arthritis. but both my hips are dislocated with the left being the worst and chelsea has only got her right hip dislocated. i wish you all the luck with your little girl. please keep me informed with any further progress. i am in brisbane/australia, where abouts are you? thanks again for your note, take care, nicky

Katrina - posted on 09/08/2009

Hi. Ive never posted on here before but I love it how you share your experiences with other mothers going through such simliar things. I hope everything works out for your little girl. My little girl is now 3 and a half and we hope she won't need any more surgery on her hips in the future, but you never know. Thankfully she was diagnosed with DDH at birth so then wore a pavlik harness for 6 months or more. But this failed to help with her dislocated hips. She's since had closed and open reductions but were now keeping an eye on one hip as it seems too shallow. I noticed your daughter had another appointment the other day, how did she go on? Btw, do you have other kids and did they ever have hip problems? xx Kat xx

Tara - posted on 08/11/2009

Hi Nicky, We are seeing Dr Walters at Ipswich Hospital. Apparently he is one of the best because when we were at RBH they knew him well and said she was in very good hands. He's about 70 years of age though. Olivia was put in the Rhino brace yesterday and has to have it on for sleeps. How did Chelsea handle the sleeping and what did you do? Because Olivia was in the Von Rosen Splint for the first 5 months of her life, I thought she would be fine with this brace because she would be sleeping the way she did back then. What I didn't count on was the fact that the first 5 months of her life she didn't know any different. Now she can move around and is sleeping on her stomach and side and to go back to sleeping on her back is a major issue. She slept for three hours and then let out an almight scream and wouldn't calm down. I had her laying on me for a bit and she started to calm down but kept whimpering everytime she moved. The worst part is that Olivia doesn't cry - I know that sounds weird but she just never did. She would let out whimpers or if she did cry as soon as you gave her dummy and kitty she would stop, so I have never had this problem of not being able to stop her from being so upset. It's heartbreaking. How do you cope?

Nicky - posted on 08/11/2009

hi tara, chelsea is in her 3rd brace which is the Maple leaf brace. it starts from under her armpits and finishes just above her knees. the reason why she has had so many braces is because the first brace (denis browne) she wore for approx 5mths but she couldnt walk properly in it cos her legs where spread apart and stuck in that position so she walked like a cow girl. but then she kept taking it off as it was velcro. 2nd brace (abduction brace) she wore was only for a month as it just wrapped around her upper legs with a bar in between and just slipped off as she walked. so then they put her in the maple leaf which is her current brace, which she still pulls off now n then. chelsea has only had the one surgery at 15mths old (sept last year) and then went in to the full spica plaster cast for just over 2mths then into a smaller spica cast for a few weeks more. then into a brace in dec 08 and still in one. the surgery has put her hip in place as it is no longer grossly dislocated. but her hip is still too shallow. we are seeing dr ross bolton at redcliffe hospital. for some reason chelsea was not allowed to wear the rhino brace which i cant understand as i have seen a few toddlers her age wearing them. her surgeon seems to think her hip was dislocated since being an embryo hence it being grossly dislocated as he hasnt seen one quite as bad as hers was. i personally cant compare ? it wasnt picked up till she was 15mths so her age making it harder to correct it quickly. her last appointment (05aug09) he said to bring her back in 3mths for another xray but today i received an appointment for her for 02 sept which is only like 2weeks away so im not sure whats goin on now. he seems to think more surgery tho. are u seeing dr donald at the RBH? my eldest son sees him as he performed surgery on his foot after a ride on mower accident. he is a very good surgeon also. they say that if a childs hips are braced prior to 1yr old then there is a good chance of correction. after one, it is more difficult, mending time is slower, and even finding a brace that is suitable is also very hard. chelsea is also a very tall 2yrs for her age. good luck with your bub, hope it all works out x

Tara - posted on 08/06/2009

Oh no! That's no good. What brace is she in now? How many surgerys has Chelsea had? Who is your surgeon at Royal Brisbane? Olivia had another check up and x-ray on Tuesday because she started to stand and her surgeon didn't want her to do that (try telling that to an 11 month old!). Her hips are still too shallow as well. Her left hip is starting to move but the right hip hasn't moved since birth. They are putting her in a Rhino brace and will check her monthly. If it hasn't fixed or no changes can be seen, she will have surgery. They don't want to keep trying her on different braces. The way they were talking though, was that surgery will fix it but after reading your threads, Chelsea has had a few surgerys? I'm a bit confused.