It's finally here! Removal Surgery TOMORROW!!!!

I swear there were times in the past 4 months that I thought this day would never come.  It has been a long and hard fought journey.  If that seems melodramatic, I assure you that it isn't.  If I have learned nothing else, I have learned that everyone goes through something.  And we just have to get through.

But we have learned so much.....


I have learned that you never know what someone is going through just by looking at them.

I have learned that 'handicapped accessible' doesn't always mean easily accessible.  It often means 'barely meets the code'.

I have learned that children are incredibly resilient, but that you can only push them so far.

I have learned that bureaucracy is pervasive...and the healthcare and insurance industries are full of it. (Literally and figuratively!)

I have learned that if you want something done right, you have to do it yourself.

I have learned that mothers don't get a break.

I have learned that there is nothing more heartbreaking than seeing your child in pain and being able to do nothing about it.

I have learned that nobody is perfect.

I have learned that I have a shorter fuse than I wish I had.

I have learned that my daughter shares that trait.

I have learned that the love of school can get a child through the worst days.  And good teachers & administrators are priceless.

I have learned that people are good and will help, give, and assist.  You just have to ask.

Above all, I have learned to have a greater appreciation for those who care for disabled children or their elderly parents.  Being a caregiver to someone who has physical or emotional needs is absolutely all-consuming. It is the first thing you think about each morning and the last thing you think about before going to sleep.  Putting that person's needs first changes a family, changes the dynamics, changes relationships.  It is exhausting and terrifying and worrisome 24/7.  Thankfully, our journey isn't nearly as difficult or long and drawn out as some people's.  And I will thank God daily when we get through treatments if this is the only trial we have.

Tomorrow, Dr. Standard will take the fixator off my child.  He will take the pins out of her femur bone and hip bone.  From what I understand, they will not stitch the pin sites because they won't heal as well and could possibly trap infection inside.  But the sites should heal (at least on the outside) in about 2 weeks.  Today, she was fitted for a Scottish Rite Brace, which will keep her hip in an abducted position for at least 4 weeks.  She'll have to wear it 23 out of 24 hours a day.  I'm sure that it will not be comfortable and she will complain about it, but my plan is to remind her of the fixator - ANYTHING is better than pins in her leg!!!  She can take if off for physical therapy and showering, but has to wear it overnight and everything. :(   We will have an hour of physical therapy 5 days a week for 6 weeks.  We are staying here in Baltimore next week for our first week of PT at the RIAO (Rubin Institute for Advanced Orthopedics).  They are the experts and see kids all the time with this condition, so I trust them to get Ava started on PT correctly.  Her knee bend is a huge issue since she has never been able to bend more than 50 degrees and it pretty much hovers around 30 degrees.  I am hoping they will have some good suggestions for us to get it to bend once the pins are out of her quad.  She's most excited to use both crutches to get around.  We'll see if they think that is best for her.  I just don't know about that.  The last thing I want is for her to fall.  I thought most of the worrying would be over once the fixator is off, but one of the moms told me a story about another little girl falling after removal and breaking her femur and now she has to have another surgery! Because there are 6 holes in the bone where the pins went through, the integrity of the bone is compromised somewhat.  ACK!  I swear, it never ends...the worrying!!!

But for now, we are going to take it one day at a time and try to celebrate how far we have come!  Tomorrow is a big day and we are excited to get it over with and move on to the next step.  Thanks to all who have supported us this far.  We will definitely update tomorrow and as the next week progresses!