Well, its been way too long since I did an update here!
Caitlin is currently 14 1/2 years old, just over 5 foot 4 inches tall and growing up fast!
She stopped therapeutic swimming about 18 months ago, as she had learned all that they could teach her with regard to strokes and style and she wasn't advancing any more with her ROM. We also felt that she was starting to do more and more 'normal' activities and that they would eventually take the place of any need for therapy.
Not long after this she also stopped attending therapeutic horse riding (hippotherapy), although she still rides there once a fortnight, although now its in their dressage lessons instead, as the mental stimulation of learning this is far better for her. She is still getting the same advantages she got from the therapy riding too, so its definitely a win-win situation for her. I pull her out of school once a fortnight (during a PE lesson), to attend these classes, as they offer specific exercises that she needs and no PE programme could ever hope to offer the same benefits she gets from this - the increased self-confidence that she gets too, is a real bonus!
She was thrown from a horse around 6 months ago at a full gallop, landing on the road and rolling onto the grass verge. She was lucky to get away with some grazes and a few bruises, and the instructors got her back up on the horse about 20 minutes later which was great. Unfortunately, its had the long term effect of denting her confidence and she freezes everytime she gets put on that horse again. She has changed to another horse for the interim, although the plan is to get her back on the horse she is scared of and teach her that these things do happen and that she can survive them. That day I had stepped aside and let my husband go with her, so I knew nothing of the fall or anything else until about an hour later when they got home. She was so lucky though, as if she had landed badly, she could potentially have undone all the surgery done.
Just before that fall, we were noticing a pattern of increased pain levels, which leading up to November were getting more frequent and really bad, so we bought her annual check-up forward to find that her ROM wasn't good and the specialist wanted an MRI done as he was concerned she might have had a labral tear. For those who don't know what this is, the labrum is like a piece of elastic that lines the acetabulum (socket) and it stands to reason that perthes kids, with their mis-shapen femoral heads, are prone to this being torn.
Unfortunately, the appointment for the MRI ended up being on the 20th December, so instead of getting the results in 48-72 hours, as normally happens we had to wait until late January, which meant that the whole of the christmas/new year break was a bit nerve-wracking for her and I in particular.
We saw the specialist though and the results were that her labrum were intact (PHEW!!!!) although her cartilage is thinning and that is a concern. So she now sprinkles gelatine on her cereal 4-5 times a week to see if that will help with the health of her cartilage, as good cartilage will help to post-pone the need for her hips to be replaced. I am hoping that as she is now well into that habit, it might be one that sees her through a lifetime!
She was actually a little disappointed that she wouldn't need a labral repair or two, as she was hoping that while they were doing that, she would get a tenotomy done on her hip extensors and hopefully that would go a long way towards her having improved hip extension when she walks, meaning a better gait! The labral repair surgery is laproscopic, so in comparison to the osteotomies and external fixator, it was going to be a lot quicker recovery too.
On the hobbies and interests side, Caitlin joined a waka ama team in November - waka means canoe and ama is the outrigger part. Its a 6 person team, with the girls ranging from Caitlin and her friend at 14 1/2 years old, up to around 18-19 years old. They train once a week most weeks, sometimes twice a week.
Just before christmas, we all travelled to Lake Rotoma for regional competitions and the girls placed well, especially considering how short a time they had been together! They were then able to go to Lake Karapiro for the national competitions, where they were expected to do the best they could, but no-one expected a placing from them. Considering they had to race in the Under 19's, instead of the Under 16's, due to a couple of the girls ages, they placed 4th, with the fastest time, so actually made semi-finals the next day! They ended up with a national ranking of 16th, which considering there were 40+ teams racing in that age group, was an outstanding achievement!
After all of this, was when Caitlin had her specialist appointment and she informed him then what she was doing. He was pleased for her and totally supportive, as he has always been of her horse riding too. Waka ama uses a lot of upper body strength - back, shoulders, arms etc, but the movements go right through to the pelvis, without any weightbearing, so is perfect for her! She is now training as a steerer and will soon go on to single sculling too, which will do her the world of good.
Her pain levels are pretty good at the moment, although we do find that she needs heavier duty pain meds to ride, so will address this with the specialist at her next appointment mid-year, as she has slipped back to 6 monthly appointments yet again! So frustrating to get to the annual ones, then slip back everytime - perthes truly sucks like that!
She is in her second year at college and is thoroughly enjoying herself. She loves science, which is really good as at this point in time, she wants to be a forensic anthropologist or pathologist! She is taking drama and is involved in a Shakespeare festival in a week or so (Taming of the Shrew a la Lady Gaga! - can't wait to see it to see how they pull that off!). She is taking food and nutrition, isn't too keen on maths, hates english (can't be my child LOL!!) and generally seems to be embracing all the opportunities that come her way.
Last specialist appointment I got a letter done by the specialist for the school too, as I was sick to death of having to tell them she is still on restrictions and has to be allowed to pick and choose activities, if she knows they could potentially hurt or do damage - she is old enough to know what is required and isn't the sort of kid that shirks activities for the heck of it (most of the time anyway!).
Anyway, its been a long journey so far. Caitlin was diagnosed at 5 years 3 months old and is now 14 years 7 months old. Perthes is supposed to take around 2-5 years to run its cycle and yet here we are, 9 years 4 months later, wondering if it will ever end! I know that once her bones stop growing, we at least hit the end of the childhood phase of this, but then she will move forward into her adulthood with very deformed femoral heads, that are too big and flattened looking; acetabulum (sockets) that have thankfully, changed to accommodate these as much as possible; very limited hip extension still; all ROM measurements are low, but considering what she has been through, this is to be expected! She walks pretty well considering and unless she is having a growth spurt, or is overtired, it is hard for the general public to pick up the differences in her gait. I can usually pick something is wrong by how she is walking, before she has even acknowledged it herself. She is still also being watched (by the specialist) for a potential hip impingement, but I hope that is one hurdle that never comes up, as its another big surgery to fix and with her being so much older now, that sort of surgery is harder to deal with physically and emotionally, especially when you're a teenage girl!