Good Days...but Not So Good News

We continue to have good days here in Baltimore.  Ava is active, not in ANY pain (Hallelujah!) and in good spirits.  Our stay at the Ronald McDonald House has been good and we have spent the last few days touring the attractions of the city before going to Physical Therapy appointments each afternoon.

The bad news is that after today's PT session, I was brought in to talk with the therapist and Dr. Standard's PA about her hip ROM.  There are many aspects to range of motion and one important one is called hip flexion.  It's the bend that your hip does in order to get into the sitting position in a chair. You bend 90 degrees (at least) at the waist, right?  Well, Ava is only bending about 30 degrees in her Perthes hip.  When she had the fixator on, for a while, she was doing better.  We were able to stretch her to 90 degrees or so..but in the past couple months, she started to lose some of the flexion in her hip.  We thought it was just tightness, or her unwillingness to 'push past the pain'.  But now it's concerning.  The pins are gone and the tightness and inability to flex that hip is very, very bad for her recovery. The therapist said that they sometimes see this type of tightness, but generally it's extension, not flexion.  And more than that, the range of motion begins to improve the first week - even if it's ever so slightly.  Ava's is not moving - neither is her knee bend.  They are both stuck at 30 degrees.  She is not fighting the therapist (even though she fights with me to do the same stretches morning and night) so the therapist doesn't feel like it's a conscious refusal to do the motion.  The PA called Dr. Standard (who was out of town for the day) and we waited to hear back from him.  He said that they may choose to put Ava under general anesthesia again (as soon as this Friday before we are set to leave to go home) so that they can see what her range of motion is without her brain controlling it.  Sometimes it is a muscle memory issue, and for some kids, it's that they anticipate pain or discomfort so much that they basically create additional tightness. The only way to tell is to test the joint under anesthesia.  We heard back that Dr. Standard would like to see what we can do with physical therapy for about 2 weeks and then come back up and do the procedure under anesthesia if she hasn't made significant progress.  :(   Not only do I not want to drive back up here in 2 weeks (taking more time out of school and my work schedule), but I also don't really want to put her under again and go through all that.  We do have an appointment with the doctor tomorrow, so I am going to talk with him extensively and figure out what we think is best.

I really need her to relax - which she doesn't seem to know how to do.  I don't know how to motivate this child.  I don't know how to get past her fear.  She is so incredibly stubborn.  And most of it is in her own head.  It is truly like she can not 'get over herself' and control her emotions to get through it. She's currently having a complete meltdown every time we have to take off the band aids on her leg where they are covering the pin sites.  And when I say meltdown, I mean she pulls a tiny bit on the corner, says that it 'hurts TOO MUCH' and refuses to take the rest of the band aid off.  I got so frustrated tonight.  I asked if it hurt as much as the pin care and she said YES.  It's like everything is the same type of pain to her.  Taking off a band-aid is the same as a steel rod in your bone???  Are you KIDDING ME???  It's so irrational that it would be funny if it weren't so incredibly frustrating.  I fear that the hip flexion and knee bend are the same way.  It's like she's gotten it in her head that it's going to hurt, so it is going to hurt and she will tighten up and refuse to do it.  I don't know what to do with that.  Nothing I've tried (or the child psychologist we saw in VB for a while suggested) works with her!  She is a special case, this stubborn child.  Argh!

We did get passes to go to the Aquarium this morning before PT.  Both of the other boys have been before, so they didn't go with us.  Just Ava & I had a really nice time, too.  Here are some pictures of what we saw:

After PT, all the kids went to the movies to see "Alexander and the Terrible, Horrible, Very Bad Day"  It was a REALLY cute movie and we all enjoyed it.

Finally, here is a video of Ava walking her her Scottish Rite brace.  Without crutches, she has to waddle - or walk 'like a cowboy' in order to have balance.  I think that once her right knee bends again, she will maybe not have to waddle quite so much, but for now, this is how it's going to be.  :)

If you could send up a few extra prayers for us to get past this fear and tightness issue, I would really appreciate it. We were really hoping that the next leg of this journey was going to be complication-free.  :(