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!
