Range of Motion: Part 2. GOOD NEWS!

So, when we left off it was the week before Christmas and we had the surgery to manipulate Ava's hip and knee joints to see if there was anything that could be loosened up or that would show on the arthrogram as hindering her range of motion.

Unfortunately, after the surgery nothing changed.  Ava's ROM continued to hover around 60 degrees no matter what we did.  We had a nice quiet Christmas and she actually had a week off from PT appointments because her therapists were both on vacation.

It was around Christmas week when I started to question whether all of the decisions we had made had truly been the right ones.  What if we had made the wrong choice?  What if we never should have done the ex fix surgery to begin with?  It sure seems like she's WORSE off now than she was before! At least she could bend her hip before the ex fix.  At least she could sit comfortably!  What if what we did made things WORSE long term?  Maybe we should have just done the core decompression and not the ex fix.  Were all those months of hell for nothing?  All the pin care?  All the horrible showers, the sleepless nights, the walkers, wheelchairs, crutches....all of those months and medical bills and physical therapy and stress and it's WORSE???  I cried one day in the car on my way to take her to the last PT appointment on Christmas Eve.  Here we were, on Christmas Eve, going to physical therapy.  Physical therapy that didn't seem to be doing ANYTHING.  Maybe we had made a decision that would negatively impact my child forever.  And our family had to endure months of hell for what???  It was a low point, I'm not going to lie.

And then last Friday, January 2nd, 2015, Ava had her first PT appointment of the new year.  My mother took her because I was in Georgia visiting my sister.  I got a phone call from my mom and when I answered, it was Ava!  She said, "Mommy!  Guess what my number is!  GUESS!"  I dared to hope.  I took a deep breath and literally closed my eyes. She yelled, "SEVENTY FIVE!!!" 75 degrees!  OMG!  I couldn't believe it.  She had made progress!  FINALLY!  The next day, she had PT again and called to tell me that she made it to 80 degrees!  At this point, I was in shock.  Two days in a row?  Progress?  Seemed like a dream.  We took a few pictures during our nightly stretches and a video showing her knee bend.  It's much more fluid and her hip is staying up past 60 degrees all of a sudden!

And just yesterday, I may have cried big, fat, happy tears when she came home from PT and announced that her hip flexion was 90 degrees.  I honestly wasn't sure that it would ever happen.  Ninety degrees!!!!  Knee flexion 73 degrees.  It's happening.  She's really making progress!!!!

I do still have one major concern and that is Leg Length Discrepancy.  Since we did not do a bone-cutting surgery like an Osteotomy, I didn't think that there would be a major difference.  But Ava seems to have a BIG difference in hers.  :(

The next time we meet with Dr. S, that will be my first question.  Trying not to worry about things now that we are moving in the right direction, but it's hard after a year of worrying.  LOL!

90 degrees YAY!!!!

Range of Motion: Part 1

I can't believe that I haven't updated the blog in so long!  We got to the holiday season and everything just dropped away!

So, after our appointment in November with Dr. S where he said 'slow journey, not race' and we had the knee brace made, we continued to do PT 2-3x per week and stretches at home and try to encourage Ava to work hard at range of motion. By our cruise in December, nothing had changed.

We had a wonderful time on our vacation to the Caribbean - Ava loved it and we all had time to rest and relax and reset.  Traveling was HARD with a child who can only bend about 55 degrees at the hip, though.  She can't sit up straight in any chair, so driving, flying, etc. was rough.  If you have never tried to sit in a chair without bending in the crease between your hip and leg, I urge you to try it.  After about 10 minutes (at the most!), your lower back starts to ache and at about 30 minutes, your leg and back are on fire.  So, the day of travel to FL and the day of travel home were really hard.  I was very worried about her on the ship in a couple ways.  First, the pool on deck.  I was so worried that she was going to slip and fall, but I wanted her to have a good time and just be a kid and play.  It's so hard when you're a parent and you want to create these experiences for your child to be able to just be a CHILD after all the surgeries and physical setbacks and all the ways she's been separated from her peers this past year.  It's heartbreaking, really.  And the ship has a "kids club" where you can drop kids off and they have them put with their own age group to do activities, games, etc.  First, I was worried about dropping her off and not being able to really explain what was going on with her...why she can't sit on the floor like the other kids, why she can't bend her knee, or hip to sit, why she is not allowed to run or jump AT ALL, etc.  And I was worried that the other kids would maybe make fun of her or make her talk about why she couldn't do some of the games.  They play a version of dodge ball called 'gaga ball' and they did other running activities.  I just want so much for her to be an 8yo and play.  :(  But she had a great time and everything went smoothly for her.  She made friends, got her face painted for the first time ever and we truly had a nice vacation.

The week we returned, we headed back to Baltimore for another checkup.  Technically, we were 10 weeks post removal surgery and Ava's range of motion numbers were dismal.  Her knee flexion was around 55-60 degrees and hip flexion around 60-65 degrees.  Her external rotation is barely anything - maybe 5 degrees.  These are bad. Most kids 8-10 weeks post removal are past 90 degrees in both hip and knee, if not full range of motion restored.  I called early that week and asked the PA whether or not Dr. Standard would want to do a surgery while we were in Baltimore to assess her range of motion under anesthesia like he had mentioned at our last appointment.  He really wanted her at least to 65 degrees and she was BARELY making that....and only sometimes.  The PA said she talked to him and he said that we wouldn't really need to do that yet.  So, I decided to take Ava alone since there was no need for Ryan or my mom to come if they weren't doing surgery.

Fast forward to the day of the appointment.  They took more Xrays and he came in to talk to us about Ava's progress.  He basically said the same thing.  This is a slow journey for Ava.  There have been other kids who have had a tough time with regaining range of motion and even one who spent a year and a half to get back to 'normal'.  I asked about anesthesia/surgery and he said he thought it was fine to wait and see what happened over the holidays and we could do it in January if nothing changed.  I pushed back a little saying that I really didn't see how anything was going to change and that I really wanted to know what was going on.  I knew that my January calendar with portraits was busy and didn't really know if I could come up to Baltimore again for a few days at a time.  He said, "Well, if you are really concerned, I can fit you in tomorrow morning.  I'll make Ava my first surgery of the day and we can get it out of the way."  Ava was NOT happy.  She really didn't want to miss her last day of school and holiday party and immediately burst into tears.  But I knew that we should get it out of the way....we were in Baltimore already, and if it could help, I wanted to do it sooner rather than later.  I convinced her (okay, maybe bribed her) to accept that it was for the best.  We hung out with Annabelle, another little girl who went through the ex fix process recently and was there for her 2 week post op checkup and they had a great time together.

So, bright and early the next morning, we headed back to Sinai Hospital and checked in for surgery. I honestly didn't realize how hard it is to have a child go through surgery before.  Even 'low-risk' surgery.  This basically was like exploratory surgery.  They put her under anesthesia and his plan was just to move the joints around to see what happens when she is asleep and not feeling pain or fighting the movement.  He said that sometimes scar tissue or stiff joints can loosen just with a little manipulation and that he can't really do too much of that RIGHT after taking out the ex fix pins for fear of breaking bones.  Young children's bones are still not as hard and so with the holes in them, they obviously can fracture more easily.  So, 10 weeks post removal, the holes are not as dangerous.  But leaving your child unconscious in the OR and sitting in a waiting room not knowing what is going on is so nerve wracking.  Even though I knew that she was fine, really.  Barring any crazy complication, she was fine.  But crazy complications happen and it is hard to sit in a waiting room, alone, and just wait.  Not knowing.  He said it would be about 20-30 minutes....I was in the waiting room well over an hour.  And since we weren't planning on surgery and no one came with me, I was alone with my thoughts and fears.

When I got to the PACU (post anesthesia care unit - in other words recovery), Ava was literally coming up off the bed. Crying and whimpering and her body was bucking.  I was shocked - that had never happened the past two surgeries.  She was asleep when we got to the PACU those times and just slowly came out of anesthesia.  Apparently, the medicine they give before surgery to young children....they call it 'happy juice'.....helps them to sleep more deeply and wake up more easily.  Well, before the surgery, Ava refused to take the 'happy juice'. She said it tasted bad the last time and didn't want it.  I thought it was just for her to be calm and not remember going into the OR, so I didn't push her to take it.  They didn't tell me that it would make coming out of anesthesia so awful.  :(  It was hard to see her so upset and uncomfortable.  The nurse said she wasn't really awake, but the tears escaping her eyes and the confusion I saw was not fun.

Dr. Standard came in shortly after to talk with me.  He said that he was able to manipulate her knee AND hip both to just short of 90 degrees in the OR.  He didn't really feel anything big 'let go', so he wasn't sure if anything would change in her basic range of motion quickly.  But he definitely said the joints *can* get there.  He even took a picture in the OR and sent it to my phone as proof!  He said he injected dye into the joint and watched as he manipulated to be sure that he didn't see any physical reason that things aren't bending in her hip.  So, it is just a matter of continuing to work at it.  I was not sure I liked that answer.  Not sure I knew if it would be better  or worse.  If there was a physical problem that was causing the lack of ROM, we could maybe 'fix' it.  But there isn't.  So what do we do next??

So, we packed up and drove home - it was a long drive and we had to stop every hour or so because it's hard for her to ride in the car comfortably. And we continued to work on PT over the holidays.

More in the next post!

4 week Post Removal Checkup

Today was Ava's 4 week appointment with Dr. Standard.  It is hard to believe that we are already four weeks past removal surgery....it's been quite a whirlwind!

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 CHKD
3:30pm-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!!  

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.  :)

Post-Op appointment with Dr. Standard

Tomorrow, we are 1 week post removal surgery and headed home after Ava's PT appointment!  She is so ready to be back home, see Carter, and go back to school on Monday.  She honestly cannot wait!  My schedule will be insane for the next week as I have to fit in 8 sessions and a night of 6 family minisessions in 6 days.  Ack!


We had our post-op appointment with Dr. S today and he addressed our concerns about ROM (range of motion) in Ava's hip flexion and her knee bend. Basically, he said to chill out.  He is a very calming person and he does NOT overreact to things.  One of the reasons that we chose him to take Ava's case is because he sees so many Perthes patients and often takes the hardest cases.  So we know he has literally seen just about every possible complication and outcome.  Ava was originally not supposed to be a 'hard' case, but her underlying tightness was a concern.  Dr. S. said that when he took the fixator off in the OR, he assessed her ROM and was able to flex her hip 80-90 degrees (when she was under anesthesia).  Therefore, whatever is going on that is preventing her from flexing her hip more than 30 degrees is not actually in the hip itself.  It may be that Ava is perceiving pain and tightness and 'locking up' the joint and she just needs to stretch it little by little and get used to that motion again.  He said that her knee did not bend at all under anesthesia and said that it may be a long time before her knee bends to 90 degrees.  :(  But he does not anticipate that either her hip flexion or knee bend are going to be long term problems....depending on your definition of 'long term'.  He did say that is a slow journey and not a race for her.  We are not to expect her to go from 30 degrees tight to 90 degrees in a few weeks.  It may be a month...or two.

While I am very relieved that he isn't concerned that there is something really 'wrong' with her hip, I am not excited about the prospect of dealing with this inability to bend at the hip and at the knee for months longer.  It is very difficult when she can't sit in a regular chair (or her desk at school).  And she is fighting stretches both morning and night because 'it hurts'.

The really good news was that her Xrays look very good!  He said that her hip looks "perfect" and her abduction is really good (which is why the brace isn't hurting or bothering her).  The head of her femur is round with no malformations, 'knuckles' or 'divits'.  They couldn't get the second angle on xray because you have to be in a froggy position with both knees bent in order to get that one and Ava can't bend her knee.  So there is a chance that the ball isn't as perfect as it looks on the one xray image, but if that is the case, it is only slight, so that's no concern.  The head is completely inside the socket where it's supposed to be, which is a big plus!  So if she can maintain her range of motion, this is a very, very good outcome from the fixator surgery.  It would mean that she wouldn't need any further surgeries unless something changes in the future.

This is the frustrating and difficult thing about Perthes Disease.  There is no way to tell how it will end up.  First, no two cases are the same and no two outcomes are the same.  So, you can't compare your child to any other child - or your child's progress to any other child's progress.  There are so many factors that go into Perthes Disease that even just deciding whether or not surgery is the right option is overwhelming. You can't look to other kids and say, "Well, it worked for Rylan and Reese, so it will work for Ava.  Their cases are all different.  Age, gender, range of motion, containment, rate of collapse, amount of involvement, etc. are all factors.  Then once you decide on a treatment plan, there is no guarantee that the treatment/surgery will work perfectly or that the outcome will be positive even if that surgery goes well.  I have heard stories of children who had fixator surgery, it looked wonderful and then the child relapsed - even years later.  They started to lose range of motion or have unexplained pain or need another fixator or osteotomy surgery or total hip replacement surgery, even.  It is a frustrating disease with many unknowns.  So, the only thing we can do is take the positive milestones as they come and work through any challenges - hoping and praying that we will continue to have good days.

Our mantra is going to be stretch, stretch, stretch.  Range of Motion, Range of Motion, Range of Motion....until we just can't take any more.  The more she moves, the better - we are going to figure out how to get her in the pool as much as possible and maybe look into equine therapy.  Apparently being on a horse is great therapy for Perthes, so I need to figure out if that's an option for us.

Ava quickly posed with Dr. S as he rushed out the door to see another patient.  He was very busy today - probably the least amount of time we have seen him yet at an appointment - but he made sure to stress that we were to stay the course and he will see us back in 4 weeks where we will decide what to do if her ROM hasn't improved.  So, it's back to Virginia Beach tomorrow and starting up with PT at CHKD again on Monday.

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.  :(

The Brace arrived....fun in Baltimore!

Yesterday, the brace maker finally came to the Ronald McDonald House to deliver the braces to all three kids staying here.  We were told that we had to make an appointment to have measurements taken at the brace maker's office here in BALTIMORE at least 24 hours before surgery so that they could get the brace made and delivered to the hospital and fitted onto the child in recovery.  So, we drove up Wednesday night so that we could make it to the brace maker's office for the 8:30am appointment time.  (Yikes!)  Well, the day of surgery comes and....surprise... no brace.  Apparently UPS 'lost' the braces (I'm not saying that is a lie, is just smells funny to me having shipped literally hundreds and hundreds of packages in the past few years and seeing how UPS tracks packages) so they wouldn't be here until Monday.  None of us moms were happy - including the kids, because they had to deal with the big pink pillows strapped to their legs whenever they were laying down, but didn't have anything on while getting around, and since that is all they wanted to do (as you saw from my pictures earlier!!), they actually liked that. But the brace is an adjustment - especially after days of having nothing on.  It's called a Scottish-Rite brace and abducts the hips 20 degrees. So the kids end up walking like a cowboy, ha ha!   The brace is supposed to be worn for 23 out of 24 hours a day for at least 4 weeks.  So, it can really only be removed for physical therapy and shower/bathroom time. They have to sleep with it on and everything (or use the dreaded pink pillow at night)!  But they had a full 72 hours with NO BRACE from surgery until Monday, so they really got used to the freedom. No ex fix and no brace?  It was like heaven!  Until it was time for the brace fitting.

Luckily for us, Ava's brace seems to fit really well.  We have found a few advantages of her being so small - one was that the Dr. released her to full weight bearing right away.  She isn't heavy enough that her hip takes much force as she walks. Some of the boys who weigh more have to continue with the crutches for the full 4-8 weeks because of the pressure.  The other nice thing about being light is that the brace doesn't seem to rub her skin in any spots or irritate her.  And, being a girl, she can wear leggings underneath the brace and they are tight enough to the skin that fabric doesn't get bunched under it or anything like that.  She said her legs do sweat underneath, and really likes when it comes off, but it doesn't seem to bother her once it's on.

One benefit of not having the brace in the PACU after surgery also is that it would have been much harder to get it on with the gauze, pads, and bandages that were all wrapped on her leg after the pins came out.  Plus, I would imagine that it was tender and could have been painful to put the brace right on.  So, waiting a few days, we could see that it really did fit well (so no big adjustments to be made) and it doesn't hurt her to come on and off!

This morning we all headed off to the Science Center for a little field trip.  The kids really had a blast together.  We were just talking about how wonderful it is for them to have each other.  Not only just to pass the time, but also to have comic relief and others who are going through the same thing.  They motivate each other and they challenge each other and they watch out for each other.  <3

Here are some pictures I took at the science center:

DJ and Cooper laid on a bed of nails - Ava was too chicken!!!

Last night, for "Activity Hour" here at the Ronald McDonald House, they had Karaoke.  The boys were so shy, but after a little convincing, Ava jumped in and sang a few songs with one of the bigger girls!  I even got some video!!!

Go Ava!!!

The Zoo (& Post Surgery Shower)

We started the morning on a positive note - headed to the Baltimore Zoo for some fresh air and animal watching!  The new penguin exhibit was supposed to be great (and it was!) and we had a great time seeing the animals and feeing the giraffe!  So cool!!

We got back to the Ronald McDonald House and relaxed a bit before it was time for the first post-removal surgery shower.  I have been dreading this for 48 hours.  I asked them to go easy on the tape, but apparently nobody listens worth a crap because this poor girl had surgical tape across her belly and down her leg on the front and back.  I guess the boys had a different OR staff, because they didn't have hardly any tape and Ava had a ton.  She is so anxious about everything that just pulling the tape off was horrible.  We hadn't even tackled getting the gauze pads off the actual pin sites or anything - it took 45 minutes just to get the tape off!!!  We worked slowly - tried using baby oil to loosen the tape, but that didn't work. I also asked them three times for adhesive remover at the hospital and she told me they didn't have any.  What a crock!  I should have pushed more.  :(

After nearly an hour of getting the tape and pads off, it was time to get the gauze off the actual skin.  I knew there was no way we would be able to pull them off without getting them wet, but I also knew that getting them wet might not be good because of the amount of blood that the gauze pads had soaked up.  The minute the water soaked them, the blood just started pouring out.  Which freaked Ava out entirely.  I tried explaining to her that she was not bleeding AT ALL - it was just the gauze that had, like a sponge, soaked up everything 2 days ago and now that it was getting wet, it was just running out.  But it didn't really help.  She had fibers of the gauze pads literally stuck to the holes where the pins were!  It was every bit as bad as the first few pin cares.  :(  She said to me again, "I never wanted to do ANY of this!" as she sobbed and sobbed.  It just breaks my heart that she blames me for doing this to her.  I know that it will be a distant memory one day....she won't really remember all the details of this whole process.  I can only pray that all of this heals her as much as possible and she never has to do anything like this again for Perthes.  

Once the gauze pads were OFF, it was fine.  The water didn't hurt the sites, we put antibacterial soap on and made sure she was clean, but didn't really touch them at all.  She has a ton of adhesive residue across her belly, but we will have to work to get that off later.  I have lots of pictures, but I'll just post one of the sites in the shower and one of the Barbie band-aids we put on afterward!  Ryan said he thought they looked really great - and I guess I agree.  I mean, it could be worse.  None of them are big gaping holes - actually, the top back pin site looks nearly closed already!  But it is hard to look at for sure.  

After dinner tonight, the three Musketeers (Ava, DJ, and Cooper) got to have some of the cake that Cooper's mom had made for them.  We were missing the fourth, Buddy, but he wasn't able to come to the RMH.  So we saved him a big piece and went ahead and gave the kids their little sweet reward! They really are doing AMAZING.  They are all up and walking around - we are having to yell at them to slow down and stop pushing it already!  The little hops, the fast walking with crutches/walker, the climbing up onto things (yes, really!) to get something just out of reach.....they are just incredible kids!!  And they have gotten along so well.  Three is sometimes a hard number, and although the boys have definitely paired up and gotten a bit 'boyish' at times, they've all three played together and the boys have been great about including Ava.  Probably helps that she's more of a tomboy than a girly-girl.  :)  She loves playing air-hockey with them and even beat each of them once or twice!!!

Tomorrow is our first PT appointment at RIAO - so we are all hoping that they do as well 'working' as they have playing!!