Hi Everyone, sorry it has been so long, life has been a little crazy hence the lack of posts but I have been keeping up with everyone's elses posts.
Correly - congratulations on such wonderful news. i am absoloutly delighted for you and really hope this is the begining of the end of your journey.
MummyNaomi - I agree, listen to your instincts. Our bubs had very similar initial diagnosis and they x-rayed Chloe with no brace and legs straight. You are right, we shouldn't compare but the radiologist staff at the Royal Childrens said it's poitless x-raying with brace on.
Chloe is continuing to love her brace free time and is becoming more mobile. She can now sit up confidently on her own, crawling, however, is another thing. She is just too flexible! With the brace on Chloe was able to crawl backwards but without it she goes from being on her tummy, to moving backwards once, doing the splits and then sitting up. She is so comfortable in the splits and on her tummy often has her legs in braced position anyway. I am starting to think she is going to skip the whole crawling thing altogether which is weird for me as her brother crawled from 6 months to 12 months.
Often on her tummy she will put her leg right up next to her ear, it really is amazing what she can do and i will have to enrol her in gym or dancing later on to make use of this insane flexibility.
Am not sure what kind of intervention I can get her to help with the whole crawling thing as I don't think anyone can make her LESS flexible. Going back to RCH mid march and I think I will show my clinician what is happening then and see if she needs physio or something.
Thanks Vic and Wiggs for the info re the Xray, I've been thinking about it since your post Wiggs about Chloes improvements and wondering if our Ortho could have made an error with the Xray Referral. I have great faith in him as a Dr, but everyone can make mistakes and perhaps it is just the norm for him to xray babies in splints (and just wrote this automatically) as he would see more with socket issues than just acetabular angles, as from all the research I have done usually babies have issues with both, its much less common that its just the angles. Anyway, I have sent him an email as I got his card out to give him a ring and noticed he had an email address, this is what I wrote (I dont want him to think I doubt him as a Dr), probably sounds a bit sucky hahahha
Hi There Dr xx,
I hope it’s ok to email you with a question regarding our son’s treatment, I was going to call the office but then noticed your email address on our appointment card.
xx referred us to you late last year, and you are kindly treating our baby son Bailey xxx for Hip Dysplasia. We have our next appointment with you on March 4th for which we have a referral from you for an Xray to bring to that appointment. I just noticed though on the Xray referral that is says to Xray Bailey in the splint. I wonder if this could be an error? Our understanding from consulting with you is that Bailey’s hips are stable and that it is only the angles that has resulted in his treatment (dennis brown bar). I recall that the last xray we had in November to determine the degree of his acetabular angles was with his legs straight down and that you measured the angles from this Xray Image. As we understand his hips are stable, I am wondering if this xray should be the same (with legs straight out of the brace) so we can determine what improvement has occurred in the angles?
Sorry to question you, but we are hoping for a progress report at the March appointment to understand that the treatment is effective and I just wanted to be sure that the Xray we have at that time will provide this information. I recall you mentioning to me that another infant you were treating had a great improvement over three months, and Bailey would have been in his brace for 3 months at this point so this made me think you would be looking for these measurements at this time.
If indeed the Xray referral documentation needs to be altered I can pick it up prior to heading over to the xray department on March 4th or perhaps your staff could post it out to us?
If it is more appropriate for me to ring your clinic, please let me know, I will be happy to do so.
Thanks for your time, Kind Regards,
ETA - Wiggs, I used to take Bailey to Gymbaroo (Babyroo) prior to the brace and it was great, I wonder if something like that would be good for Chloe to encourage her to crawl?
Have not been on the computer for days, but well done Corelly on getting the brace off! You all must be thrilled.
Corelly & Naomi - thanks for asking how we are going.
DD2 had her little procedure done this morning actually. It was only a quick one but of course being a bub, had to have a general anaesthetic for it which we were a bit nervous about. The procedure went fine and no need for further surgery thank god. They called me to collect her from recovery and I could hear her crying the minute the lift doors opened! All the nurses were fussing over her and having cuddles. She was very happy to have a cuddle with mum though! She was pretty miserable for the next hour or so before we left the hospital, but think it was a mixture of crankiness from GA, overtired, hungry (had to be fasted prior) and wondering why she couldn't crawl about!
Anyway, she was very happy and all smiles when we got in the car and I carried her into her bedroom when we got home to close the blind from the heat and she practically leapt out of my arms into her cot! She has been passed out for 90 mins now. Am sure it is the anaesthic wearing off though and am preparing myself for some restless days and nights ahead! Oh, and of course much crankiness that she can't move around as easily anymore! Can you believe that on the weekend she started furniture cruising! Oh well, she'll do it again one day...
Her big sister is at a birthday party now and I am sure will be very curious about this weird thing her baby is now wearing!
Naomi - sounds like Bailey could become an olympic gymnast or performer with Cirque Du Soleil with his flexibility!
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!
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.
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