You know what your mom always says.....

You know the saying "If you don't have anything nice to say, don't say anything at all"??  That's what your mom always taught you, right?  Well, now you know why I haven't been blogging lately.

No pictures.
No updates.
No stories.

Nothing.

Because I don't have much nice to say.

We had about two good days.....in the past couple of weeks.  In general, I would say that most days find us frustrated, overwhelmed and anxious.  All of us.

Wednesday was a good day.  Start to finish - it was good.  I was very hopeful that we had turned a corner.

Today was another rough one and I started this post with tears in my eyes and a heavy heart.

Ava looked at me today and said in a mournful voice, "I never wanted to do this in the first place!" and I just didn't know what to say.  *I* didn't want to do this either.  I remember the first time I saw the ex fix on a forum for Perthes and I showed it to Ryan and distinctly remember saying, "We are NOT doing THAT to her!"

Yet here we are.

We are 6 weeks post op.  And still struggling in much the same ways and with most of the exact same things as the very first week.  Which is very frustrating.

I am most frustrated with the fact that her pin sites don't seem to be healing as quickly or as well as all the other kids who had surgery around the same time that she did.  I am finally seeing some healing in the top three and the big, long pin is closing up from the large, gaping wound that is was.  Hallelujah. But she still complains of pain in all of them - and the bottom two pins hurt her the most and look the worst.  I have had Dr. Standard's cell phone number for a while now, but haven't wanted to be 'that mom' and text him.  It just seemed too invasive or something.  But finally on Monday, I texted him with pictures of her pin sites asking for advice.  He got right back with me and said that the bottom two (distal) pin sites have GRANULOMAS on them - which is basically hyper-healing tissue that will not heal without corrective treatment.  He said that his PA would be in touch with me the next day for further instructions.  Well, as has become normal, I didn't hear anything back the next day...so I emailed her the following day.  Still heard nothing.  I emailed and called the next day after that and still didn't hear.  So finally on Thursday evening I texted him again to say that I hadn't heard anything yet and wasn't sure what to do to proceed.  Finally, this morning I heard back that the recommend a silver nitrate treatment.  She said is 'wouldn't hurt' in her email, but when I went online to do some research, I found that silver nitrate is a cauterizing agent!  The sticks basically look like matches and you rub them on the wound and it turns the tissue black.  Ummmmm...my freaked out child who is super anxious if anyone even gets close to touching any of the pin sites?  Yeah - she is not going to tolerate that well. I also read quite a few commenters who said that it does, indeed, sting/burn and they recommend lidocaine or other anesthetic agent first if you are going to do this.  I also found that the silver nitrate sticks are prescription only.  So we have two options, really.  Either we try to get our pediatrician to do this - which isn't going to happen...I called their office and spoke with the nurse and she pretty much acted like I was crazy to even suggest it - or we travel back up to Baltimore to have their office do it.

I don't know what we are going to do.  This weekend, we are going to apply an over the counter drying agent to those granulomas to see if we can help them heal without the silver nitrate and make a decision on Monday, I guess.  :/

Today I'm kinda feeling like having a big pity party.  We have 11 weeks left of the ex fix and then we go back for removal surgery and she has to wear a brace for 23/24 hours a day for the following 6 weeks.  I think we are far enough into this process to be frustrated but not seeing the end of the tunnel....kinda feeling like it will never end.....

I hate to admit this, but I knew that Ava was not my child who could withstand something like this.  I knew it would be a horrible process if something were to ever happen to her.  She's just not my easy kid.  She's never been one to 'roll with it'.  And I feel like we are all just sludging through each day of frustration and tears, anxiety and depression.

I don't want to stay positive.

I don't want to hear 'it's only temporary'.

I don't want people to tell me how good she looks.  (when they don't see her meltdowns)

I don't want to 'look on the bright side'

What I want most is her pin sites to heal so that she isn't in constant pain when she moves and so that she can get sponges on and off without all the screaming.  I really feel like if they were more healed, she wouldn't be so damn anxious about every.little.thing.

And I want her to eat and drink so that she is hydrated and nourished (which will probably help with her bad attitude).

But really, I don't want to do any of this.