Summers of Surgeries

Some days I really can’t be positive. So I keep quiet. It was a rainy day anyway. No need to venture out into the world which is good because I happen to be pretty annoyed at the world. I am just tired of Nick’s summers being so surgery filled. Last year on June 17th (his baby sisters first birthday) it was the knee. This year on June 22nd (my birthday) it will be fixator removal. I could add previous surgeries to this list but you get the picture.

As much as this is a surgery to be celebrated it is hard because we have no idea how he will feel after it. He might now want to walk for a while. The rod could cause him pain. Who knows! I just want Nick to be able to relax and just be a kid for a while. A really long while!

I also sometimes realize how much it impacts the other kids. We wont be going to amusement parks until Nick can go on rides. Would it be more fair to take the other kids and leave Nick behind? I don’t think so. Is it the end of the world not to go to amusement parks? No but when I think of how few times we really have gone it is kinda sad. There are other things I don’t do because it is hard with 4 kids (and really it’s just hard cause one is in a fixator and one is about to turn 2). The kids also have fifth disease and the rash from it seems to be gone until they are out in the sun and then it is red and itchy for a while after.

I guess we’re home bound and a little stir crazy. I took them to Target yesterday and the best part was that I could get them all in one cart. People found the sight of us quite amusing. Big kids, little kid, baby and stuff all in one cart. I counted pushing it around as a workout for me.

I think the moving factor is changing this summer too. We’re in a kind of limbo and I am tired of it. So really I am just complaining which is a waste of time and energy considering the kids are asleep and I could be asleep. Plus I realize I have much to be grateful for. I just wish this summer was easier for my boy and I guess the rest of us too.

“In times of war we have huge medical breakthroughs. I think this will be one of them. They’re manufacturing miracles there at BAMC.”

People have always said that medical advancements often or mostly come from wartime. I’ve always been a grateful citizen in terms of appreciating the sacrifice the members of the armed forces and their families make! Reading about friends whose husbands deployment has turned them into single parents is heart breaking and inspiring at the same time. Never mind what these soldiers do.

Now the medical advancement factor is hitting so close to home. You can read a little about it below and check out the blog post but Time has a great article from last week’s issue. You cant read it on line unless you are a subscriber. I would bet your local library has the article.

Honestly it made me cry. The way they described a soldiers leg having a stiff ankle and lacking muscle sounded a lot like Nicks. Joe at Lawall in Harrisburg told me when he created Nick’s insert that with as stiff ankle he would need something with a springing action. He demonstrated and described and this IDEO is certainly more involved that what he told me about but based on the same principles.

I’ve been seeing the amputee’s with cheetah leg’s pics and stories everywhere and while they are all inspiring I do find it a little annoying (not very mature but I am being honest). My kid cant run like that. He has gone through so much to keep his leg but people like him are not celebrated. Amputee’s who overcome are all over the media. It’s not that I think they are undeserving it’s just not where I look for inspiration. How about the kids who undergo years of surgery to be able to walk on their own leg. Is that less noble than loosing a limb. How about these 96 soldiers going back to active duty with the IDEO! These soldiers underwent extreme surgery and certainly grueling physical therapy. That is just as brave as those who choose to amputate (I am sure their PT is just as difficult). Many other soldiers went through the limb salvage program and didn’t go back to active duty but they are no less a hero in my mind. I just would love to read more about how they are doing.

And I would love for my son to be able to meet one of these soldiers who has gone through surgeries similar to his and worked hard to keep his limb. I am sure that would inspire Nicholas so much! I would love to thank them because it is likely a device like this could help Nicholas some day and it wouldn’t exist without the Return to Run Clinical Pathway. Having a stiff ankle like his could work just fine or not. He could finish his planned surgeries and end up in pain while walking. He still has some pain now! Removing the fixator might fix it. The shoe insert helps but now the shoe insert causes pain in his heel. Really it’s not the insert it’s the shoe. We have to get him new shoes. Thinking of it now our insurance would not pay for the insert because it was not attached to brace of some sort. I wonder if this kind of thing would be easier to get covered. Not any time soon I am sure but some day.

So I am hopeful and grateful. I am hoping Nick’s leg will function well enough without an IDEO but grateful that if he needs it technology continues to move forward. Between this and the internal lengthening device I am excited about the future!

“In 2009, Lieut. Co. Joe Hsu, an orthopedic surgeon, Ryan Blanck, a prosthetist and Johnny Owens, a physical therapist, saw an alarming number of wounded warriors who’d had their legs saved coming back to ask for amputations. Many were Special Operations troops, Rangers and Special Forces soldiers. They were asking to have their legs cut off so they could be outfitted with the new, advanced prosthetics and get back into the fight. “The reason why we had all these guys who wanted their legs cut off was that they wanted to run,” Owens says. For high performing troops, running separates those who can do their jobs from those who can’t.

So the team put their heads together and came up with the Return to Run Clinical Pathway. Blanck studied the Cheetah Leg prosthetic and designed what’s called the IDEO–Intrepid Dynamic Exoskeletal Orthosis. The orthotic has a footplate that fits into the shoe, a brace that stabilizes the ankle, then carbon fiber rods that run up the back of the calf to a cuff below the knee. The warriors have to learn to run on the balls of their feet, the barefoot running style, and the IDEO helps them spring forward. Blanck custom makes each IDEO, and once the warriors are outfitted, Owens takes over. He puts some of the military’s toughest troops through their paces, mixing sports medicine techniques with standard physical rehab.

The results have been astounding. The team has put 219 warriors through the program; 97 have returned to active duty. Using the braces, they’re jumping out of airplanes, fast roping out of helicopters and many have returned to the same combat zones where they were nearly killed. But for many of these driven troops, their dream is to return to their units and get back into the fight.”

Read more: http://battleland.blogs.time.com/2012/05/24/the-miracle-manufacturers-limb-salvage-and-the-ideo-team/#ixzz1wgGvdywB

Fibular Hemimelia Support Group Greatness

I am proud of many things in my life. I wont go listing them in order of importance or anything but one I have to mention is the group Fibular Hemimelia & Limb Lengthening Awareness! It really is at the top of my list right now! I started it. I try to check in regularly and help when I can. I know I don’t know everything about FH. Who does? Still the thing that makes me most excited is to see other mothers and fathers sharing and supporting one another.

Tonight a mom wrote to the group about her new baby’s fh. Her post was touching on many levels. The responses she received within minutes were amazing. It sends a clear message: YOU ARE NOT ALONE.

Sharing information and supporting one another is why I started the group! Thats it and it works.

https://www.facebook.com/groups/fhlla/