Anyhow – the 8 plates are doing their jobs… he’s getting closer to straight. Dr. P said we’re getting there… another 3 months… then we’ll maybe be ready for removal… at least of the knee.

Also – this week Dr. P put out a press release on the new procedure they are doing… just amazing. It will truly be amazing to see what his office looks like in a few years… with the advancement of technology, we may just eventually see external fixators disappear! If I was a parent with a new baby being born today with FH or other limb issues, I think I would just take a deep breath and hope this advancement means less intrusive, infection prone procedures!

http://www.businesswire.com/news/home/20120105006575/en/Ellipse-Technologies-Announces-Implantation-PRECICETM-Remote-Control-Limb

So the boys and I are planning on going to West Palm Beach for the first week in December. They are having a fund raiser for the Paley Foundation – and it works out that Owen could use a trip for a check up anyhow.

We all know what a remarkable few years this has been for Owen. There were many days that sucked. And there were many hurdles he overcame.  The bottom line is, Dr. P and all his staff put my boy on a level playing field with his peers. He will never been “the same” as everyone else – it’s not feasible – but he is running, and jumping, and capable of participating in all the activities his friends participate in because of Dr. P.

I always want Owen to understand how lucky he is – I want him to understand that he was put here with this condition because he was strong enough to handle it. I want him to know how amazing he is to have gone through it, and come out the otherside a stronger boy. I want him to never forget that he was so lucky to have the opportunity to have this procedure by one of the best doctors in this field.

We are at a point in this process where I’m strong enough to reflect and see what an amazing process this was.

And it saddens me that some children, like Owen, will not have this opportunity due mainly to finances and logistics.

So while we’re down in West Palm, we will be participating in the Paley Foundation 5K. Owen will run/walk the race as well – which is pretty remarkable (Gavin will be tagging along too!). Our goal is to raise $1500 for the charity. It’s a non-profit – and all donations are tax deductible. This charity is in its infancy – but the ultimate goal is to help more children get this needed surgery or equipment to get through the surgery. That’s a good thing.

If you are interested in donating, stay tuned. We will eventually have an option where you can donate online. You can also send a check to us written out to the Paley Foundation. So stay tuned!

Paly Foundation Team in Haiti

Our appointment was at 3:15… I think we saw Dr. P around 5. Not bad. I’ve said this before… just to in, relax, bring snacks, eat their snacks (see below photo), bring a book… don’t think of it as an appointment… think of it as a day long event. This way, if you’re out of their at 5, you are pleasantly surprised! I will say this is a heck of a lot easier to do without an extra kid and without my son in pain. It brings back so many memories of Owen screaming while we were waiting…

We had x-rays taken in the office for the first time, which was so nice. It’s great not having to go over to the hospital where honestly, there are sick people. At Dr. P’s office, it’s just physical conditions… chest x-rays for nasty coughs! We saw the crew and hung out for a while. Lucky for us, Dr. P had a big cancellation so he was on the floor when we got there. Otherwise, I think it might have been a very late night.

We found out some really great news – that Owen is unrestricted in his activities.  His break has healed. You should have seen his face. He is so excited to be able to do gym, and recess, and all the other things kids do! This is the first time since September of ’09 that he can do this stuff. Unfortunetly, it might be a little short lived. We found out that Owen’s very knock kneed. This is also causing him to walk more and more on the side of his ankle. To fix this, we’re going to need another surgery called 8 plate surgery. They basically put this 8 plate bracket on his ankle (internally) and tether it to his knee. As he grows, it moves his knee out and puts him more on top of his foot vs. on his ankle.

So this is where the commitment title comes in. Before you begin this procedure, please understand that there is no end date. You have to stay committed to this process for the entire lifetime of that person. At this point, I have no expectations. Try not to commit to your child that this is the “last” surgery… we’ve have a few “lasts.”

This procedure is much simpler then anything like lengthening. It is outpatient. But I have read a few other experiences and it sounds like there will be some pain and adjustment to deal with. So while Dr. P is saying it’s an easy fix, I know my kid, and I know it’s going to be another hurdle. It might be an “easy” surgery, but I just know he’s going to take some time to get used to that feeling in his knee/leg. I am planning on scheduling for early June so we can hopefully be moving easily by the time July rolls around. He will then have the 8 plate removed at some point down the line when the knee knock is corrected.  

Completely switching gears here, but I wanted to throw out another word of advice for families going through this. This is hard. This will be one of the hardest things you’ve ever done.  It is devestatingly hard to see your child in pain, and not be able to fix it. It’s even harder when it’s for a whole year. We as parents know we’re doing whats best but it’s so hard to do. Children involved with this pain most certainly deal with some Post Tramatic Stress – and honestly, I think parents do to. Be prepared for this.

Monday night I was giving Owen a bath and I noticed he had what looked like a blister on one of his old pin sites. It seemed a bit odd, and I thought it was probably from having his boot from the fracture on his leg. I almost did nothing. But then I thought about how weird it was that it would form directly on his pin site…

Thanks to the fabulous technology we have today, I took a quick pic on my iphone and texted it to Dr. P’s Physician Assistant (PA). He took one look at the picture and it was all down hill from there.

Apparently, this wound that was healed for 4 months was suddenly becoming infected. The only way to treat it is to surgically go in, and remove the infection, re-opening the pin site. And of course, the only place really to have this done is with Dr. Paley. Owen had no pain, and no fever. It was very localized to that location, but we had no way of knowing if it would spread.

So, my week changed within two hours. Suddenly I was booking air travel and rental cars at 10 pm for the next day. And lets just say that I wasn’t planning on spending an extra $1K this week for sudden travel.

We got down to Florida at 10PM on Tuesday night. We were at pre-op at 6:00 AM (yeah… they always tell you 5:30… but you always end up waiting around for at least an hour… I was beat and needed that extra 1/2 hour of sleep). We still had not even seen Dr. P or the PA’s. The nurses kept asking me what he was having done and I probably sounded a bit silly saying I didn’t know.

The two PA’s came to check out Owen’s leg around 7:30 and they said for sure he would require surgery to remove the infection. They also told me he might need to stay over a night if the infection had gotten into the bone and was serious. awesome. Another thing I wasn’t planning on.

Here is Owen before going into surgery… on “happy meds”…

Owen’s surgery took about an hour to two hours (who knows how long Dr. P actually worked on him… he was running a few surgeries at the time). The PA came out and told me that luckily, it wasn’t as bad as they thought it was going to be. They did have to go in and dig out the tissue, but we didn’t need an IV with antibiotics or have to stay the night. Oral antibiotics would be sufficient. They also had a chance to check out the x-ray of the fracture and they said it was definitely there on the film healing (Boston Children’s had questioned if it was ever there… ). We were told to continue using the boot for another three weeks and then take more x-rays.

So now back at our friends home in Fort Lauderdale. We have to go in for a dressing change tomorrow and then we can start our journey home.

I guess my whole point to this posting is that just when you think you’re done, you’re not. Expect the unexpected. This journey is long, and hard, but hopefully down the line, it will be worth it.

I will also caution; If you are starting this procedure, and financially it is a stretch for you, make sure you are fully aware of what you might need. You might need an extra couple grand set aside for emergency trips to florida. The past two incidents were clearly hard to deal with since our doctor was in Florida. Luckily, for the fracture, we were able to stay locally. That being said, I’m still not 100% satisfied that the local Children’s Hospital took the right steps. There is a bit of Ego busting that goes on between these doctors, and I think that factored in when they looked at one of “Dr. Paley’s” patients. Once I found out how serious this infection could be, we made the decision that only Dr. Paley should be the one to operate on Owen. There’s no way, after this painful year, that we can let an infection set us back. So it’s a tough decision to make… stay local, or make the trip. Doesn’t it kind of suck that our kids medical care comes down to dollars? shouldn’t be that way… but until something fabulous happens with health care, that’s the way it is (I think it’s crazy that you need over $7K for instance in health costs before it is deductible from your taxes)

And here Owen is at dinner… clearly recovered. He can’t walk, because we can’t get his boot on with all the dressings. Hopefully with a dressing change tomorrow, and a little healing, he’ll be up and (not) running again.

The bigger blow is that on Sunday, Owen was playing with his friends like he has been for the last two months. They like to play cops and robbers types games between the two houses. Owen was “chasing” (but not running… it’s Owen’s special way of moving fast without running) one of the kids and suddenly he felt something hit his shin. He hopped on his good food to the grass, sat down, and proceeded to scream. I ran down, and realized pretty quickly that something wasn’t right.

We ended up at our local hospital who took x-rays. They determined that there was in fact a stress fracture on his Tibia. They wouldn’t touch him with a 10 foot pole… so they told us to go to Children’s Hospital’s ER for casting the next day. They splinted  it and off we went. Awesome.

I have to admit, I thought we were beyond this. I had no idea his legs were still so fragile. I knew he couldn’t jump, or run… but he was just being a kid… playing. Now I wonder just how long we need to hold him back from doing the things kids do.

The cast goes all the way up his thigh. We aren’t flying back down to FL for a fracture… maybe if I was made of money, and wasn’t moving my whole life right now, we would. But for now, we’re going to deal with Boston Children’s hospital for the isolated incident of the fracture and treat it like any other fracture. Luckily, because they do lengthenings, they aren’t afraid of it.

So Owen gets to start a new school on a full leg cast in two weeks! At least for this age, that’s about as cool as you can get. And I guess on a bright note, he’ll make lots of friends quick since he’ll need “helpers” all the time.

We took x-rays a week ago. It is amazing how the bone is healing. The holes are less noticeable.

We are still waiting to see what Dr. P says, but I’m pretty sure it’s still “no impact”… as there still are some weak spots in that bone.

I am concerned about Owen’s ankle. He’s really walking on his ankle bone. If you want a description and some great photos of the ankle bone, check out THIS site. Owen’s issue is he walks on his Talus. The Talus is the part of your foot, facing inward towards your other foot, that your shoe is sort of cut out for. It is just above your foot. Owen’s is down by his foot. This means it can get uncomfortable to be in shoes, and after standing for a while, he just gets pain in his foot. I know much of this is due to his foot being suspended for 10 months. I’m hoping we’ll see improvement with Physical Therapy, but part of me believes that there’s a good chance we may end up down in FL at some point in the future looking at options for his ankle. Owen has what Dr. Paley calls a Type II ankle. It’s not normal, but it’s functional. It is a ball and socket joint. He’s missing digits, and bones, but not so severely that the foot is fused, or that it can’t go flat. But I am worried that it’s starting to collapse more then it used to. So we’ll see… maybe it’s just a matter of re-strengthening those muscles. Prior to surgery, Owen had fabulous control of his foot due to his muscle build up, but that was sort of lost from not moving his foot for the 10 months.

We did pull him out of PT at the place down the street. Part of me felt he was not getting what he needed there. We need him to stretch, and build muscle and really progress. We don’t need him to simply go to PT to play. Owen plays all day. He is very good at play and staying active. He’s getting better daily from this play. I totally understand that pediatric PT involves play, but this was simply play without incorporating real exercises for Owen to do at home to improve.

So, going with plan B for PT, we were basically approved to get PT through Owen’s school. Which is fabulous for many reasons. First, I think he’s going to really succeed with the districts PT person who’s been doing this much longer then the person we had at the private facility. Second, it means less disruption for Owen, and myself, allowing me to work more often and not be driving to the school daily in the middle of the day. It also allows Owen to be active at school a few times a week. We are writing his PT into his 504 plan. I highly suggest all parents who have kids going through limb lengthening look into getting a 504 plan. It can allow for tutoring, and academic help, as well as physical needs – like elevator access… and now PT. For Owen, his physical limitations are inhibiting his ability to learn. For instance, getting from art to his classroom will take much longer. He may miss the first minutes of a lesson because he’s still walking down the hall. Rather then hold up the classroom, we work on making it so as the year goes on, he isn’t taking as long to get from one end of the school to the other. Also – thinks like the lunch line… or the bus line… it would be horrible if a child pushed passed Owen and caused him to fall. We have things in our 504 plan to handle the bus… making sure Owen’s the last person off the bus to avoid the pushing, and making sure an adult is with him when exiting the building during dismissal so he doesn’t get mowed over by kids being kids. So we are very excited about all of this.

Here are some pictures of Owen from this past weekend at a cousin’s wedding – you can see he looks great. You can see his scars, but they really have healed amazingly well. They aren’t too sensitive to touch anymore and he lets me put lotion on his leg.

I love this photo below… When Owen was going through surgery, my Mother-in-law sent a photo of Owen running freely on the beach. In her note she just kept thinking about him being free on the beach and knew it would happen again. This photo below just reminds me of that and how far we’ve come. You can also see that we have a ways to go… his foot tends to stay in that 90 degrees and he walks on his heel. His foot was fixed at that 90 degrees for so long that I think it’s going to be a while.

Just kids being kids below… so nice to see!

You can see he’s clearly “standing” on his left leg below. This is his pose most of the time… THIS is what we need to correct going forward. I had him on the wii today using the balance board… and it’s crazy how to the left he is… but it will get better with time.

We had two weddings this weekend… one the kids were in, and one the kids were invited too. It’s amazing how many people followed Owen’s surgery and how many people were so happy to see him walking free and clear of any assistance. We are really so, so thankful for all the support we’ve had throughout this procedure. Hopefully, down the line, all my typing will impact another family beginning this process or considering this procedure. We are so thankful that Dr. Paley was able to give Owen two equal legs…

Immediately, they went to suggesting we eventually look into orthotics. I think I might have upset the therapist when I said “thanks but no thanks” to their brace clinic. The fact is, nothing will be done to my child’s leg without the approval and agreement of Dr. Paley. Why would we go through all of this and then take a different course of action because a therapist, who’s seen my child once, thinks he needs orthotics.

I am a bit worried about Owen’s ankle. It does seem more turned out and protruding then it did pre-surgery. It’s almost bulkier then it was before, but not really in a great way. I think down the line, we may end up back in West Palm talking to Dr. Paley about next steps for the ankle… but we’ll see. Maybe I”ll be surprised at how Owes flexibility and control comes back with time and therapy. One funny thing is how much tighter his left leg is. I think it’s from all the walking and stress he puts on his left leg… where the right leg is used to being put in funny positions to avoid things.

At the end of the session, I broke out the iphone to show the therapist his before and after x-rays on his leg… so she could see what the fixator looked like and what the bone currently looks like. We agreed to start with three days per week (the script was for 3-5 days). For me, 5 days is just tough on our schedule, where 3 is manageable.

One bummer is, with our insurance change, it looks like we have a $25 co-pay per visit… with the old insurance, we had a deductible and then we were paid out at 100%. This is going to add up very quickly, so I have some calls to make to confirm that this is how it is supposed to be.

So insurance. I always try to make this blog something that parents can reference.. and hopefully avoid mistakes that we made. I have a love/hate relationship with insurance. I am so, so thankful that we have it… I know there are many people who are trying to do this out-of-pocket. I love that we have a PPO that allows us to go out-of-state… that is huge as well. However, I hate how complicated and annoying it is! Why is it never clear what you should be paying? Why do I need to get 15 different bills for one procedure? Why does it take 10 months to re-process a claim?

My insurance company told me something yesterday that I never have heard, so I thought I’d share. When we had Owens surgery back in October, a person from billing came up shortly after the procedure and asked us to pay $380+ dollars. I did so – thinking that it was a great deal if that’s all we had to pay. Plus – we had a $500 out-of-pocket max… so I assumed this would be applied to that deductible. Between that, and a $100 ER visit and a few other bills, we quickly got to the $500. Back in December, I was told, many times, that we had met our deductible. Knowing this, I simply would not pay another bill. I kept calling various billing departments, checking with our insurance to make sure things were reprocessing (for whatever reason, once you meet that out-of-pocket max, they have to re-process it… or something like that). I was always assured that the bills we were getting were in error or just a delay. Well – yesterday I get a call from a collection agency that we owe one hospital $308. I told them they were wrong, and proceeded to call the insurance companies. Low and behold, apparently we do owe it. It is part of the $500 out-of-pocket payment and is being applied to that… but this appointment was from December… so that makes no sense. Except they re-processed bills from back in October to make them paid in full… which removed them from our deductible payments. I asked them about the $380+ I paid on 10-6… and they told me that they know nothing about it because HIPA prevents hospitals from sharing with the insurance companies what patients have paid. WHAT??? How the heck does that work??? I don’t know about you, but I can see huge gaps here in that system… why wouldn’t our insurance companies know about amounts we paid?? So now I”m out the $380+, it’s not applied to our deductible, and now we’re out that money. Good luck getting it back from the hospital.

So here’s the bit the insurance company told me that I had never heard. They said to never, ever pay a co-pay/deductibles the day of the procedure (for thins like surgeries… obviously for things like plain doctor visits, it’s a little different). They said to tell the hospital you would prefer to see what your insurance pays out first.  They told me hospitals in Florida are particularly difficult to deal with because they deal with so many uninsured residents… so they try to get as much money up front as possible.  So a word to the wise… unless you can ensure that your insurance will pay $X, and you owe $X amount… wait for all the red tape and paperwork to get through the system before you pay a bill. So annoying.

When will we get health care reform? (REAL healthcare reform)