6 month Checkup with Dr. Standard

It's been almost 7 months since the external fixator was removed in October and we had our follow up appointment with Dr. Standard on Monday.  It was a whirlwind of a trip because we had to drive up to Baltimore and back all in the same day for her appointment.  So, we left at 5am for the 4+ hour drive up, waited for about 2 hours before seeing the doc and then drove 5+ hours back, which turned into 6 hours because of traffic.  :(

I was really worried about this appointment.  I don't know why I started to get nervous a few days before...maybe because it's been three months since we were last there and I am used to more frequent xrays and updates since we had been going every 6 weeks or so.  But I just had this fear that we were not going to get good news.

So, the xrays were somewhat difficult to read, but Dr. Standard seemed pleased with the bone regrowth in her femoral head and how it was sitting inside the acetabulum (cup).  He said that part of the head is still not completely regrown, and there is one spot, in particular, that is a bit concerning because it looks like there is a bump or divot or something in the bone.  The best way to overcome that is to maintain good range of motion and it should work itself out.  At this point, the ex fix treatment seems to have done exactly what we were hoping for - it kept the bone in the correct position while it fell apart and regrew initially and sped up the process substantially.  He said she can continue to play softball and has no restrictions on movement at all.  Hallelujah!

Here she is at softball last week:

BUT - he is concerned about her lack of range of motion since it really hasn't improved *that* much in three months.  He thinks that she may have even lost a bit of ground with regard to her abduction - which is how far apart she can spread her legs - and so he told her that she needs to start wearing her brace again at night.  She is devastated....and frankly, I'm sad for her too.  She has just gotten back to being able to sleep all night comfortably and it really isn't easy to sleep in that contraption that keeps her legs spread.  :(

He also said that we need to really double down on the stretches and make sure we are doing them TWICE a day.  We have gotten a bit complacent with them, honestly, because it's been such a struggle with Ava's attitude and our family's schedule.  She still fights us tooth-and-nail on these things and some nights, when everyone is tired, it's just easier to say, "Nevermind - just go to bed!".  But we can't do that anymore.  We have to make her do them no matter what - through tears and tantrums, they have to get done.

Here are the stretches we MUST do: http://www.lifebridgehealth.org/Uploads/Public/Documents/RIAO/ICLL/PatientHandouts/PerthesExercisesHandout.pdf

And the physical therapists at CHKD have given us a whole other group of stretches and exercises to do for strengthening and range of motion, too.  It's exhausting, truly.  But we are hopeful that with renewed resolve to follow protocol, her range of motion will improve by the time we come back in another 3 months for her next checkup.  Last week, they had a little party for Ava at PT to celebrate her 100th visit.  Not sure that's really an achievement....haha.....especially since they are billing insurance about $400 per visit!  OMG!  But they were very sweet to give her a certificate and balloon and she thought it was fun.  lol

So, all in all, a decent appointment.

Dr. Standard said that if by the middle of summer (Early to mid July), we haven't seen improvement in her range of motion numbers, we need to call him and schedule some more time in the OR - under sedation, they will do another round of Botox injections and manipulations.  Which is lovely since our insurance still hasn't approved the bills for the other two Botox injections because it's used for cosmetic reasons usually and is considered 'experimental' when used for this.  *roll eyes*  Don't get me started on insurance woes.....

Ava's gait (or walk) is fairly decent when she pays attention.  But when she's tired or has to go very far, it's pretty much like a teeter-totter.  We are hoping that once she gets full range of motion back, it will even out more.  I'll have to record her soon and put it on here so that my fellow Perthes moms can tell me if it's 'normal'.  What we are learning is that there really is no NORMAL for Perthes Disease.  It affects each kid differently and the treatments don't work across the board exactly the same for every child.  So we will just keep on keepin' on....thanks for all the prayers and support. It means so much to know that you are out there reading and following our journey!