For those wondering, the pin sites have healed up quite nicely. I don't have a current picture, but this is what they looked like just a week after removal and they look even better now!
She has had absolutely no pain since the ex fix was removed - which is just incredible to me. The sites don't hurt at all, and the only time she complains at all is when we are doing stretches/exercises and during physical therapy when they are really working her joints.
Ava was so excited to get back to school after a week off - most kids her age probably wouldn't feel that way, but she absolutely loves school and her teacher, classmates, and even just learning! I love that about her personality!! The school continues to be wonderful with her and very accommodating to us. She has been wearing her abduction brace 23 out of 24 hours a day - she only gets to take it off for physical therapy and when she goes to the bathroom/showers. She truly hasn't complained very much about it at all - I guess we are lucky in that she is distracted by school and once it's on, she just doesn't think about it much. I think she's only said a few times to me "Do I *have* to wear it all night?"
The biggest struggle right now (aside from her Range of Motion exercises) has just been maintaining the schedule. Here is her schedule during the week:
6:45-7am - Wake up, get dressed.
7am-7:30am - Eat breakfast and do 15-20 minutes of dr. prescribed stretching exercises
7:30am - Leave for school
8am-3pm - SCHOOL (including 30 minutes of swimming during PE class)
3pm - I pick her up from school and we drive to CHKD3:30pm-4pm - Homework in the waiting room
4pm-5pm - Physical Therapy appointment
5-5:30 - Drive home
5:30-6pm - 'free time' and/or finish homework/reading
6pm - Dinner
6:30-7pm - 20-30 minutes of dr. prescribed stretching exercises
7-7:30 - Shower/bedtime routine
7:30 or 8pm - Bed
Phew. That is a packed-full day for her. Usually by the end of PT, she is exhausted and whiney and the rest of our night (including stretches) is a tearful mess. We are all stressed to the max. PT 5x/week is a nightmare. The other kids who had removal surgery the same day as Ava are already on a 3x/week PT schedule, but because Ava has such issues with tightness and her ROM (range of motion) is so much less than them, we have been trying to maintain the 5x/wk schedule.
While we are seeing *some* improvement in her ROM, I was very concerned that when we came back to see Dr. Standard today, he was going to recommend that we put her under anesthesia to see what he can do with the joint and possibly do some further treatments.
Her knee did not bend more than 20-25 degrees the whole time that the ex fix was in place. There was simply nothing we could do - or the PT department could do - to help with that. The pins closest to her knee were just SO close and right through her quad muscle. But most of the other parents I talked to said that their child's knee bend came back 3-4 weeks after removal surgery. Ava's knee is not coming back like that. It is moving, but very, very slowly. She is resting at about 35 degrees now....and during PT, they can get it to 45 by pushing and working it a lot. I have taken some pictures, and when I look at those, I definitely see improvement. But day-to-day and week-to-week, it seems like we are not really getting anywhere.
First picture is the week we got home and the second is last night.
Her hip flexion is also not coming back as quickly as we had hoped. That's the one where you bend at the waist to sit up straight. She is only bending at about 45 degrees right now - PT can get her to about 50-55 degrees when they really work it. So, that makes sitting in any chair very difficult. Not being able to bend at the waist AND not being able to bend the knee is like a double whammy. Makes sitting anywhere (school, in a car, at a restaurant) very difficult. She ends up 'perching' on the edge of a chair with her leg out to the side most of the time. So, she is still sitting in her wheelchair at school because trying to sit perched on a chair all day would just not be comfortable at all. At least in her wheelchair, she can be somewhat comfortable.
SO - today, we met with Dr. Standard. They took xrays again of her hip and he said that the femoral head regrowth looks really great. She is contained and round and healing nicely. He released her to nighttime-wearing of the brace only! WOO HOO! That means she doesn't have to wear the brace at all during the day anymore and can work on learning to walk more properly again! He said that if there was any kind of malformation, divit, knuckle, etc. in the head AND she had these types of ROM issues, he would be worried. But because her bone healing looks so good, he is not as worried about the motion. Because she has the underlying skeletal dysplasia (yet-unnamed-tightness-in-all-joints), he anticipated that her ROM would be more slow. His exact quote was, "This is going to be a slow journey for her...not a race". I guess I wasn't anticipating it to be THIS slow....and my concern was that it would impact her eventual outcome. He said that while range of motion is incredibly important to long-term success of the ex fix surgical procedure, it would take years of constant range of motion issues to impact the bone regrowth at this point. So, I don't need to worry that these months where she's really tight in the hip will affect it. Unless she starts not making progress or LOSING range of motion. So, we just need to continue to work at it and remember that slow and steady progress 'wins the race'. His reassurance that this is nothing to be seriously concerned about made me feel SO much better. He said that one other little boy had ROM issues and didn't get his knee/hip back to normal for a YEAR AND A HALF. Which simultaneously made me cringe AND feel better about Ava. LOL! The nice thing about going to a doctor who sees so many patients with this condition is that he's literally seen it all. He's treated the worst of the worst cases - so he has perspective big time. It keeps you remembering that 'it could always be worse'. But the bad thing about that is you sort of feel like nothing is a big deal to him - he's always seen worse. What a catch-22!
His next goal for her is to get to 65 degrees in both the hip and the knee by the time he sees her again in 6 weeks. If she hasn't progressed (or goes backward), he will want to schedule her for OR time to put her under anesthesia, work on her joint and possibly use Botox to loosen her muscles around the knee/quad.
Dr. S gave us a lot of good suggestions on how to stretch her hip in fun/different ways so that she doesn't fight us so much. One is by getting a yoga ball/bounce ball with a handle and making her sit on that instead of in a chair to watch TV. :) He agreed to give us a prescription for a muscle relaxer, too, to try to help with PT. Then, he called down to the PT department at RIAO so that we could go right down and have a knee flexion brace made to help hopefully stretch her knee and get some extra bend in. So, down we went. They luckily fit us in and were wonderful getting it custom made for her.
They made it out of casting material, so Ava got to have her first cast put on and sawed off all in the same day!!
His next goal for her is to get to 65 degrees in both the hip and the knee by the time he sees her again in 6 weeks. If she hasn't progressed (or goes backward), he will want to schedule her for OR time to put her under anesthesia, work on her joint and possibly use Botox to loosen her muscles around the knee/quad.
Dr. S gave us a lot of good suggestions on how to stretch her hip in fun/different ways so that she doesn't fight us so much. One is by getting a yoga ball/bounce ball with a handle and making her sit on that instead of in a chair to watch TV. :) He agreed to give us a prescription for a muscle relaxer, too, to try to help with PT. Then, he called down to the PT department at RIAO so that we could go right down and have a knee flexion brace made to help hopefully stretch her knee and get some extra bend in. So, down we went. They luckily fit us in and were wonderful getting it custom made for her.
They made it out of casting material, so Ava got to have her first cast put on and sawed off all in the same day!!
It has a dial to turn on one side to bend it and she is supposed to wear it for 30 minutes 2-3x/day. (Not sure when we're going to fit THAT in, but....) Dr. S. did release us to 3x/week PT, though. He said that exhausting her - and the family - is probably not helping anything and that perhaps by going down to every other day with PT will help her to feel more in control. He said that some kids work better with manipulative therapy and other kids work better when they are in control of the stretching/exercises. We are pretty darn sure that she falls in the latter group. ;) So we are hoping that taking a bit of time off of structured PT, the times she is there will be more effective.
We are four weeks away from our BIG family vacation - celebrating that this year is almost over and that we are (hopefully) through the worst of it with Perthes Disease. We are going on the Allure of the Seas - a Royal Caribbean cruise ship and can.not.wait to have some down time as a family!!! Until then, we will continue to keep working on range of motion....range of motion....range of motion. :)
We are four weeks away from our BIG family vacation - celebrating that this year is almost over and that we are (hopefully) through the worst of it with Perthes Disease. We are going on the Allure of the Seas - a Royal Caribbean cruise ship and can.not.wait to have some down time as a family!!! Until then, we will continue to keep working on range of motion....range of motion....range of motion. :)
