Single Digits!

We are finally within SINGLE DIGITS of removal surgery.  9 days remain until we get this damn fixator off my child....and it cannot come soon enough for us.

While Ava is doing well in general, we are still dealing with pain and difficult pin cares.  At school, she is amazing.  Everyone I run into from parents, volunteers and teachers say that she is positive, upbeat, happy, just cruising around school either in her wheelchair or motoring along with her crutch. None of the teachers can believe how well she's getting on.  She has truly amazed me with her physical abilities through this process. She has always been 'active' - not athletic necessarily, but always moving, always going, never sitting still.  I wondered how this process would affect her and how we would keep her occupied and busy not being able to move much.  HA!  What a laugh now. This child rarely sits still - even with an external fixator!  She has not used the wheelchair in months with the exception of sitting at school during lessons.  Well, every once in a while if we go to the zoo or somewhere like that.  But daily, it stays at school - this summer, it stayed in our garage.  She is absolutely certain that she wants to walk.  Ava gave up her walker about 2 months ago and gets around with one crutch only.  She is supposed to be at 50% weight bearing on her fixator leg.  When using the walker, I felt that she was stepping on it more than that, perhaps.  With the one crutch, she leans on the crutch and away from her fixator leg, which seems to take weight off it for sure.  But she can really MOTOR with that one crutch.  Sometimes, I have to tell her to slow down - she's walking at least as fast or faster than my pace!!!  She is up and down the stairs, on and off chairs, plays on the floor with her brother, in and out of the car, etc.  Other than sleeping at night, she is never laying down and rarely sitting for any length of time.  She hasn't taken pain medication other than Tylenol for weeks now even though her activity level is really high.

Oh, I seriously caught her doing PUSH UPS last week when she was playing outside with her brother.  And not the 'girly' kind like I have to do, either.  LOL!

We have a system now for school and it's going well.  I walk her in and she goes straight to the classroom (instead of to the gym where all the kids wait for the bell to ring).  During PE, she goes to the library, sometimes gets homework done so that she doesn't have as much on days we have physical therapy, or helps the teacher in the classroom.  Her teacher told her that she was 'her secretary', which she absolutely loved!  LOL!  Then, I have to come in to pick her up about 15 minutes before the last bell in the afternoon so that we get out the door and to the car before all the kids are dismissed.  We are obviously protective of her and want to be sure that she doesn't get knocked over or fall down!  (Especially since she doesn't ride in the wheelchair!)  But I will be SO glad to get back to regular car pool - and so will Carter.

So, during the day, she's doing fine.  But when she comes home, we have physical therapy 3x/week and shower/pin care every other day.  Plus 30-45 minutes of homework each night makes for difficult and stressful evenings.

Here's what the fixator looks like  after pin care, but before the sponges and gauze are on.  It's still hard to see this big metal thing attached to her body.  :(

Pincare continues to be horrible.  I really hoped that by this point (well, way earlier than this, but certainly by the end) things would be easier.  I hoped that Ava would realize that shower and pin care is something that is going to happen no matter what and figure out a way to deal with it.  We have tried all of the strategies suggested by other moms/kids who have gone through this, the child psychologist, school counselors, and friends and family.  Unfortunately, Ava's stubborn streak has taken root and the anxiety and stress has turned into all out refusal to participate or find a way to cope.  The open wounds where the pins go through her skin are raw and constantly cause her pain.  Touching them or messing with them in any way makes her cry out in pain.  In particular, the granuloma on one of the pins just won't heal.  It got better for a little while - but basically since July, we have struggled with it.  She cries every time we do shower and pin care.  Partly out of fear, partly when we clean the pin sites and it actually hurts.  We have started to do it every other day instead of daily just to save all of us some stress and pain.

For those of you who don't know what pin care actually is, we have to clean the pin sites daily or every other day with antibacterial soap.  The first step is to take off the sponges that cover the pin sites.  For a long while, just taking off the sponges was cause for Ava to freak out.  They often 'stick' to the skin or the hair on her leg, so she has anxiety about getting them off.  We found that just getting in the shower and letting the water soak them softened up the skin and hairs enough for them not to hurt so much coming off.  For the past month, she has requested to soak in the tub first - so she lays in the water until the sponges float off!  Sometimes that takes 15-20 minutes.  Then I have to take stock of how much actual 'pin care' needs to happen based on how much skin/puss/yuck is around the openings.  We aren't really supposed to poke around at them, but anything hanging around the edges needs to come off.  That's the part she really hates.  Usually, I take a long piece of gauze and 'see saw' around the pins to get the stuff off.  But the skin is tender and somewhat raw and she hates the process.  It would probably only take me about 5-10 minutes to do that if she would let me just do it quickly.  But the fear takes over and it ends up being a long, drawn out process.

And then there is the granuloma.  I was REALLY hoping that it would go down and stay down, but it has reared it's ugly head again!  The bottom pin finally completely cleared up, but the one above it is the problem.  :(  The doctor and PA have both told me a few times that "The best way to treat a pin site infection is to remove the pin"  But, I'm seriously sick of hearing that.  I am glad that it will soon be better, but that certainly doesn't help our day to day life and dealing with it now.  We have done the silver nitrate treatment multiple, multiple times and it just doesn't seem to ever take care of it.  Sometimes it gets smaller but never goes away.  It's bigger now again.  And tomorrow we will be starting another round of antibiotics because two of her pins are starting to look infected again and I would rather be safe than sorry with them right before surgery.

See how the bottom pin is nearly completely healed, but the top one has that huge bubbly granuloma?? UGH!  

Here's the progress from 2 weeks ago until today.  It just keeps getting BIGGER and more painful.  Poor girl!

I talked with a friend of mine who has worked in a pediatric cancer unit and I said to her that I always hear the stories of the kids who are 'so brave' throughout their treatments.  The ones who 'never complain'.  They take their pokes and IV's and treatments well and their parents say that they are 'so strong and stay positive' through everything.  I mentioned to her how I just felt so frustrated because Ava didn't seem to be like that.  She hates this and doesn't hesitate to tell us.  She cries, complains, and is upset every.single.time we have to do pin care.  She is mad that she can't do the things her friends do - participate in PE, play ball like her brother, etc.  My friend (who is so wise) said that those stories we hear about the kids who never complain are the exception....not the rule.  Of course they put those kids on TV.  They milk those stories on the news or for the telethons.  But generally speaking, kids aren't the easiest patients.  They don't understand and they don't deal well with change or stress.  They do complain.  It's NORMAL.  But kids are resilient.  Most of the moms who I talked to whose kids are a few years out from this process have said that their child doesn't really remember what it was like.  They don't have the same memories that we have - they remember not liking it, but it doesn't imprint such a horrible memory in their little brains, thank heavens!  Soon, this will be a faded memory and we will have gotten her childhood back.  Soon she will be able to run and play with her friends, go to summer camp next year, play a sport, even.  And we can't wait!

We went to Build-a-Bear and she got to pick out a new friend - she was excited to see a set that had crutches!  It comes with a cast, not a fixator, of course, but it worked!  She also got a doctor outfit and named her bear Dr. Sparkles so that she can bring her along for the next surgery!

We had a little party to celebrate 2 weeks to go - and Aunt Abby brought cake!!

So, here we are.  9 days before surgery - 7 days before we head up to Baltimore again.  Trying to remember that it could always be worse.  We are nearly at the end of this hardest part of treatment.  I know in my heart that once this fixator comes off, even though the next phase will not be EASY, it will be EASIER.  And right now, that is all that matters!  We will celebrate the milestones and pray through the hard times.  Next week, we will be that much closer to getting back to normal!  HOORAY!

A New School Year

Ava started school and everything went GREAT!  We have finished the first two weeks of 3rd grade and she is really loving it.   Her teacher set up a special table up on risers for her so that she can sit comfortably in her wheelchair and work like normal.  She is still using the one crutch to get around, but seems to put less weight on her leg than she does using the walker and she's able to move more fluidly - sometimes TOO fast.  I find myself telling her to 'slow down' all the time now!

School has been a welcome distraction.  It is wonderful to see her occupied and happy again - glimpses of the girl she was are coming through again.  She is certainly tired in the evenings and trying to figure out how to fit in homework, dinner, shower, & physical therapy (30 min drive there, 1 hour PT, 30 minutes home) has been a challenge.  But we are making it happen.

Pin care is still a struggle - at this point, I'm not expecting it to get any better until we get the ex fix off.  I was really hoping in the beginning that after a few weeks or after they healed or after whatever-thing-was-going-on-at-the-moment.....that she would get less anxious and we could do the shower and pincare without the tears and anxiety and yelling.  But apparently, it's just what is is and we're going to have to get through it.  5 weeks left.  We are definitely counting down.

I went to a dr. appointment (for me!) last week and the nurse who checked me in told me that she used to work in an orthopedic area and had to do pincare with adults who had similar things applied to their bodies.  She said it was terrible for them - that grown men would rail at her angrily because it hurt so much.  Makes me so sad for my little girl and the pain and anxiety she has been dealing with the past few months.  :(

On a good note, she is finally feeling strong enough to wean off of the narcotic pain medication.  So we are slowly working toward going to Tylenol only, which I hope will also improve her mood.  Those drugs can alter personality and suppress appetite, which I think we have both.

We had our next 6 week Xray on Friday, so we're waiting to hear back from Dr. S about how her bone healing looks.  Pray for lots of re-growth and good hip position!

Wound Care **Warning: Pictures may be Graphic for some**

As I explained last time, we have had a lot of issues with wound care in the past month or so.  Starting about mid-July, we had to treat the hyper-healing tissue on Ava's lowest two pins with silver nitrate sticks.  The tissue looked like it was bubbling up over the wound and it was causing a lot of pain, not to mention stress when we had to do daily shower and pincare.  It was truly horrible - an hour or more of crying and screaming to get the sponges off and then clean the pinsites.  Here's what they looked like:

OUCH!  Just looking at that now makes me cringe.  :(

So, Dr. Standard said we should treat them with silver nitrate sticks, but they are prescription only and somewhat of a pain to get.  So, we had to go to the pediatrician locally to get him to do the silver nitrate treatment first.  We actually went twice before I realized that it didn't seem to be working and re-evaluated with text messages and pictures sent to Dr. S and his PA's.  We went to the pediatrician, he applied the silver nitrate, the next day we did shower and pincare and the nitrate just fell off in the shower, but didn't seem to have taken any of the granuloma off.  So, we asked them to give us a prescription for nitrate sticks to do it ourselves at home (since it was going to be an ongoing process).

Here's what it looked like from beginning to end.  First the granulomas, then the application of silver nitrate.  (It's basically a cauterizing agent, but didn't hurt, thank goodness.)  Then, by the next day, the nitrate had turned the tissue black and was hard like a scab.  

We learned that if we left it on for 48 hours without doing shower or pincare, when it came off, it actually took some of the tissue with it.  The black 'scabbing' stuff seemed to make the wound finally start to heal around the edges, which it was unable to do before.  The last picture is after SEVEN silver nitrate treatments.  It was literally over two weeks that we worked with the silver nitrate sticks and pin care to get the scabs off every other day and then re-apply the nitrate.  Ava did not tolerate it very well. While the nitrate itself did not hurt, it was just one more thing on top of all the other stuff she has to deal with.  And taking off the scab and doing the pin care around them was hard because they were so tender and sore.  :(    The nitrate also stained her skin in places and still has not come completely off.

Finally we had progress.  Once the tissue got down to her regular skin level, it was much more manageable and hurt her so much less.  The following two pictures are from earlier this week.  Finally the wounds are less fresh and looking smaller - closer to the pins themselves.  HALLELUJAH!

Ava has decided that she really likes to soak in the tub. That's right, she gets into the bathtub and manages to get down and lay in the tub of water!!  She can 'float' a bit and really soak those pinsites.  It really helped when we were trying to get those silver nitrate scabs off - soaking for 10 or 15 minutes softened them up and then we could take soft gauze and slowly work it off.  Still not easy, and still a total stress for all of us, but I just keep thinking 'baby steps'.  

Also, remember this long pin in the back of her femur and how awful it looked back in June and early July?  

Well, look at it NOW!

Oh, happy day!  It has finally healed!  Yesterday's pin care was under 35 minutes and with very few tears.  I can't express the relief.  I literally have knots in my stomach preparing for her shower every day.  The stress and anxiety for ME is overwhelming - I just cannot imagine how hard it is for her and it makes me so sad.

I am also a little worried about Ava's weight loss.  She is so thin now....and it's so not like her.  She was always my chubby baby, stocky toddler and solid little girl.  Now I can see her ribs and she is as skinny as her 5yo brother.  :(  We just can't get her to eat much at all, even when it's her favorite food.  This may be in part from the pain medication she's taking, so we're trying to back off the meds a bit so see if that helps.  

Okay, enough gross pictures and wound care talk.  On to something more fun.  We had a little get together for Ava and some of her classmates at a frozen yogurt spot in town last weekend.  I figured it would be really good for her if some of the girls saw the fixator and got used to it a bit.  They were awesome.  They never blinked or made a big deal of it.  A few questions answered by Ava and that was it - they just chatted and ate their sundaes and giggled like girls do!  Made me feel so good about  her starting school next week and the girls who will be there with her. 

We also had a milestone recently....we have made it HALFWAY with the fixator!  We had a bit of cake to celebrate and are really counting down the weeks at this point until removal surgery.  I know that starting school is going to help pass the time for sure.  Can't wait to see this smile more.

Finally! Some good news!

Ava has had a few REALLY great days this week!  (You know how they say it has to get worse before it gets better?  The last week or two has been B-A-D, so we were ready for it to turn around)

She is getting around a LOT better.  Here are a few videos of Ava getting in and out of the car - all by herself - and walking with a crutch.  She has decided that she really prefers walking with one crutch over the walker.  The only worry we have is when she's near other kids or in a crowd where people may not realize and bump her.  If she were to fall, it would be terrible.  But - around our house and to and from PT, I've been trying to let her use the crutch since she moves faster and smoother it seems!  

The past three days, pin care has not been as horrific as the week before.  We started her on antibiotics last weekend to try to be sure that those bottom pins didn't get a bad infection.  We weren't sure if there was an infection, but they were starting to seep yellowish stuff (yuck!) so I thought it was better to be safe than sorry. Infection is NOT what we need - and can be dangerous with the pins in her bones.  Since starting the antibiotic, she seems to be doing better and the pin sites are finally looking a bit better.  

We've had major issues in the past few weeks with what the doctors explained are granulomas which have appeared around the bottom two 'knee' pins.  They are hyper-healing areas of tissue that have developed - sort of like the skin is trying to heal from the inside out instead of the outside skin healing up around the pins.  This has caused Ava a lot of pain, and in turn, even MORE anxiety about taking the sponges off the pin sites and washing and cleaning/pin care each day.  Every single day has been a battle.  The mere mention of shower sets her into a tailspin of tears.  The fear of pain and discomfort has overwhelmed her.  It is so hard to see my usually fearless girl (the one who rides ALL the roller coasters at Busch Gardens?!) dissolve into a puddle of fear and anxiety over putting water on her skin.   We had to do treatments with silver nitrate sticks - both at the pediatricians office and then at home on our own - for the past 2 weeks but it didn't seem to really be making much of a difference until the past couple days.  I finally think I'm seeing a light at the end of the tunnel with that.  I truly believe that if we can get these pin sites mostly healed, a LOT of Ava's anxiety and fear will disappear.  Maybe not entirely, but at least to a manageable level!

I met at the school with the principal (Director of Lower School for all those familiar with Independent School language) and her 3rd grade teacher last week.  Ava will be in 3rd grade - which is the same grade I taught when I was teaching at Norfolk Academy. :)  So she will be in my old teaching partner's class and I am so glad to know that she will be well taken care of.  I have total and complete peace about turning her over to them every day.  I know that she will watch out for Ava in the best way possible and make sure that not only is she physically okay, but that the other kids are doing and saying the right things, too.  I am fortunate that Ava is in a school that is accessible for her, but also one where each child is allowed the individual care they need - especially in cases like this.  Everyone looks out for each child - the resource teachers, librarians, support staff...they've all asked how Ava is doing and asked if there's anything they can do to help.  I know that they will all be looking out for her.  They stressed that whatever Ava needs, we can do.  If we need to bring her in late or pick her up early, that's okay.  Her teacher said, "It's just 3rd grade. She will be fine!"  :)  I honestly don't know how she's going to adapt and deal with all the stresses of going back to school, but I am sure that no matter what, we will be able to work out a plan to deal with anything after chatting with them.  

Physical Therapy is going well - she really loves the therapist and they seem to be doing all the right things to keep her range of motion where it needs to be.  We are finally back to being able to do stretches and exercises at home more easily and without such a fight, so that makes things easier.  We are still working on her not being quite so 'snappy' to her family members, but that's something the counselor will have to touch more on in their therapy sessions.  (One more appointment to fit in during the week!)  I am worried about all this WITH school in another couple weeks.  Our current plan is for her to be in school the full day 8am-3:30pm and then have PT 3 days a week in the evening.  But fitting in homework and counseling and 3x/wk PT may prove to be a bit much.  I guess we'll just have to see.  

With the help of my sister (the pharmacist), we have finally figured out (I think!) the best dosage of medicines....so we are not going to do anything different for a while on that front.  Whew!  

Looking ahead:  We have 7 weeks of school before the removal surgery (Oct 10th!).  I found out recently that we are supposed to stay in Baltimore the following week so that their physical therapists can work with her on re-learning how to walk properly, bend her knee, etc. and teach her (and us) the best stretches and movements to help maintain her range of motion.  She will be fitted for a brace called the Scottish Rite Brace and they will put it on in the OR.  It is removable, but she is required to wear it 23/24 hours a day....so no real break from the restriction and movements after the fixator comes off for about 6 weeks.  :/   When we come home from Baltimore after removal surgery, her physical therapy appointments are upped to 5 times a week.  (yikes!)  We will have follow up appointments in Baltimore after that and she will hopefully be released to more and more weight baring and more and more activity in the months this fall.  Our hope is that by Christmas she will be back to normal activity.  Please send a prayer that this is the case for her.  

For the last 2 weeks of her 'summer vacation', we are going to try to sneak in as much fun as possible since we really haven't had much at all so far.  I hope that things are truly on the upswing now.  Any prayers or good thoughts you can send our way would be GREATLY appreciated!!

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.

It's hour-by-hour

At this point, we are taking Ava's recovery and our daily life hour-by-hour.  There is literally no way to tell how things are going to go from one moment to the next.  I had a friend message me and say that it looked like the transition home went really well....and I had to laugh.  Because at that very moment, I had just finished an hour and a half long pin care routine with my 8yo literally screaming at the top of her lungs.  I was in one of those 'this is absolutely terrible and I can't imagine it getting much worse' moments.  But there have been good moments - where Ava has laughed, we've had wonderful visitors, and even gone on some outings.  But our days are filled with contention.  She is mostly whiney with a side of belligerent.

Ava was doing really quite well until late last week when she decided that she was going to absolutely refuse to take her medication....pretty much ALL of her medication.  Luckily for us, she doesn't have any infections or anything and doesn't need antibiotics.  But what she's currently taking is to manage her pain and keep her comfortable (as well as a few vitamins to keep her healthy, her bones growing, and things to keep her bowels moving).  But pain is a very interesting thing when you are talking about a child.  My sister, Amber, and I were talking about how not only does a child not have the language to express their pain type and level, but they simply don't have the life experience to understand what they are feeling.  I have never had six pins in my body - I don't know what that feels like.  And I don't know if what she is feeling is truly pain from the pin sites, or pain in her bones, or vibrations or just general uncomfortable feelings.  She has only ever had pain from a scratch or scraped knees before....or a stubbed toe!  So this isn't anything like any of her previous hurts and she probably has no idea how to describe what it feels like.

What she does know is that she hates the taste of medicine.  Which sucks because she's never really had to take medicine before, and now having to take something every 4 hours for a full 4 weeks now is probably getting really old.  We have experimented with stretching out the hours between dosages and/or cutting her dosages in half to see if she feels better, but nothing really is working.  And it's a 10-15 minute struggle to get her to drink the damn medicine no matter what we do.  I've tried all the suggestions - I've bribed her, I've explained to her what the medicine does and why she needs it, we've offered her anything to eat or drink with the medicine, etc. etc.  So, late last week when she absolutely refused to take it anymore, I didn't know what to do.  One of the Perthes moms that I've been in contact with suggested that we try the tablet form of oxy in order to get it in her system.  While she hasn't been able to swallow pills before, we've been working on it and she can chew up some food, put the pill in, and swallow the food and pill together.

But I had no idea how hard it would be to get it for her.  First, it was a holiday weekend, so the PA wasn't in and didn't respond to my emails until today.  Because oxycodone is a narcotic, I have to have the actual paper prescription in my hand to take it to the pharmacy - they cannot call it in.  So, she said she would put it in the mail and it would be to us in a few days.  Well, that doesn't work for us between now and then.  She has to be able to sleep at night, all night....she has to be able to go to physical therapy and do the exercises...she has to be able to stand pin care every day.  So, waiting 3 days is just not feasible.  The PA said she would call our pediatrician to see if he would write the script.  Here's where the story gets even more crazy.  Apparently, our pediatrician is on vacation this week and she said that none of the other doctors in the practice felt comfortable prescribing a narcotic because they haven't seen her.  For a moment, I felt defeated, but understood.  But then I got mad.  I mean, I get that a narcotic like oxycodone has rules around it.  I get that they have to be more careful because people will do anything to get their hands on this stuff.  But the fact that good people have to suffer and jump through all these hoops is kind of crazy.  So, I called the pediatrician's office myself.  I spoke with the nurse manager and gave her a piece of my mind.  It is hard to balance trying to be polite and respectful of someone's job and standing up for my child.  I asked her if it was in their records that her pediatrician saw her in May and filled out all her pre-op paperwork.  She said yes, the file indicated that.  So I asked her what more we could do besides showing that my child was having this surgery and the surgeon's office calling them today to ask that they write this script for pain medication.  I explained that they are sending me a paper prescription and we just need a few days to get us by. She said she spoke with the doctors on staff and they just wouldn't do it.  I said, "Do I need to bring my child into the office in her wheelchair in the morning to see one of the doctors?"  Finally, the night doctor on call agreed to write the script for 7 pills to get us by.  I went to the office to pick it up - one of the nurses was a bit short with me, barking that she 'needed my ID' and I had to sign for the script - but the other was very kind.

So, I finally got what I needed and headed to the pharmacy around 7:15pm thinking that I could quickly get it and get home to put Ava to bed.  But I didn't realize that I'd have a hard time actually getting the script after that!  The pharmacy was also kind of short with me - needing my ID three more times *roll eyes* - and the pharmacist told me it would be an hour to hour and a half because she 'had to put her information in a VA state database and jump through all these hoops because it's a narcotic.  Geez Louise!!  7 measly pills of 5mg each??  The whole process was absolutely ridiculous just to have a few pills to keep my kid out of pain for a few days.  Ugh.

We have had such wonderful support from friends and family so far during this journey.  I can't express how much it has helped to have my mother here to help with pincare and Ava's shower, how amazing it was to have Donna (my mother-in-law) stay here for the last week so that I could get some sessions shot and a few edited (although I'm still really behind on that!), and my sisters for being there for me to talk to, get advice from, and laugh with occasionally.  Having meals delivered to the house every couple of days has also really been fabulous.  I am so tired, honestly, and I can barely think straight anymore, so trying to figure out a dinner plan is just more than I can do at the moment.  I know that sounds crazy, but it's true.  And we've had some wonderfully sweet gifts too.  This week, Ava opened one of the sweet presents that one of my clients gave her and she was so excited to see this set inside! Super-Ava!

We had a good day at PT last week and Ava walked all the way in and out without any tears or frustration.  That is progress for sure!

We went to a friend's house for a BBQ for the holiday weekend and it was wonderful for Ava to get in the pool and play with the kids.  She did a LOT and kind of overdid it a bit.  She was a tired mess when we got home that night - and pin care is always worse when she is tired or upset to begin with.  

WARNING:  Graphic photos of her pinsites below.....be forewarned!

Here's a snapshot of the exfix on her leg.  We are experimenting with the blue clips and sponges vs. sponges alone or sponges with gauze.  It's a juggling act for sure!   The two pins on the right that you see are the 'knee pins' - they are closest to her knee and cause her a lot of pain.  The middle pin (under the pink arrow and the blue zip tie) in the middle of the picture, is the one we are having trouble with - and she doesn't like it to rub anything.  The top three pins are to the right in this picture and you can see the incision scar going from the front hip pin up to her groin area. The incision is nearly completely healed - but there are still stitches in it that need to fall out.  

This is the 'long pin' - the one in the middle of her femur:

The first picture was last week.  I was a bit worried about the greenish-yellow color of the inside. I sent this picture to them at Dr. Standard's office and she said that the greenish-yellow color is fibrous material, like a liquid scab and to leave it alone.  The middle picture is the one that hurts me to look at.  It looks like the pin is being pushed forward on her little body and the hole is opening up more and more.  The last picture was today - it looks bigger and more 'angry' than before.  :/

And these are the two knee pins.  See the stitched up areas on both of the knee pin sites up to the front a bit?  That is where they went in to find the places to put these pins and then decided that those were not good for her.  So they came out and stitched those holes up.  I call them the 'oopsies'.  :/  But apparently they can't find the exact spot until after they are in there.  (what?!?!)

Ava is so tired after PT that she has been taking a nap.  One day this weekend, she asked to read a bit first and I told her she could for 10 minutes.  I came back to find this.  <3 My little bookworm!

Today, we had a pretty good day. We went to Cinema Cafe and watched Rio2 which was funny!  Pincare wasn't quite the complete nightmare it has been, although it wasn't great either.  

Okay - I'm trying to type this and falling asleep as I type, so I'm heading to bed.  Will try to keep updating as we go along here.....night, all!

Strong Willed Rough Days

We have now been home over a week and for the first 6 days or so, things seemed to go pretty well.  We were making progress, however slight, with pincare and getting around, we transitioned to PT here at home, and we had friends bringing us meals every few days which took a lot of stress away.

Ryan's mom spent a week here and was a huge help since I needed to be at the studio for sessions and appointments nearly every week day this week.  Funny how things stack up when you take time completely off!

But the past 3 days have been just awful.  We are now in the battle of the wills.  I'm not sure what changed or how attitudes have shifted, but it seems like Ava has decided that she is just unhappy all the time and she's going to take it out on us.  She is currently refusing to take pretty much any medication on schedule - even just the Tylenol that has been keeping pain at bay.  What can you do when someone refuses to take meds?  We can't literally pour it down her throat!  It is absolutely infuriating and frustrating.  As her mother, I want to be kind and loving, but after 3 weeks of kind and loving and all I'm getting is whine, whine, cry, complain, and rude behavior toward everyone, it's really hard to want to be kind.  Yes, I know her world has been rocked but at some point, she's gonna have to 'suck it up' and deal.  This is our new normal.  I don't like it either.  But sitting around whining doesn't change anything.  And refusing to take the medicine that will help you feel better?  That's just cutting off your nose to spite your face, kid.

Sigh.

I'll do a more positive, picture post soon.  Just can't manage it at the moment.  I'm working on getting all my orders done (burning 9 flash drives today!) and editing the 8 sessions that are sitting in the queue now so that people don't start emailing me with "When are my photos going to be done?"  I want to say, "As soon as I have a full 5 minutes to focus on anything but whining!!"

This is kind of like having a newborn again - she can't do anything completely independently.  I have to help her every time she has to get up, reposition, go to the bathroom, get something to eat, get another craft/book/activity/game......it's a constant thing.  I get about 10 minutes (maybe!) of something accomplished and then I am interrupted to get something else for her or deal with whatever crisis has popped up.  Then, when she finally goes to sleep at night, I manage about an hour before I'm literally falling asleep sitting up on the couch with my laptop open.  :/   I think the stress is just catching up to me.  I'll get it together this week.....I know I will.  It's just me and the kids this week, so I'm going to get a schedule together and we are going to stick to it.  Hopefully that will help!