Moving On

Little by little Nick’s leg is healing. All the pin sites are, which I guess are no longer pin sites are getting smaller. The only issue he is having is in moving his leg in one particular motion. I am thinking of calling Sinai today just to check and see if it is a problem or just something we need to work on with physical therapy.

The removal went so well.  Having the rod put in and not getting a cast as worked out for Nick so far. He is still not full weight bearing and I am having trouble getting him to use the walker. He’s totally willing to use the wheelchair for longer walks but he really wants to be free.

It’s going to take some time before his walking is back to “normal”. I am not really sure what his normal will look like but so far it seems not to be hurting and thats all t he normal I need.

The kids started camp in our new neighborhood last week. There was a giant inflatable water slide for Nick and Charlotte’s group on their first day. Charlotte did not want to do it but Nicholas was so excited. Climbing to the top was really hard for him. Watching him was so emotional for me. It reminded me of the Miley Cyrus song “The Climb” that came out during Nicholas last lengthening. Nicholas took a really long time to climb up. There was a line of kids waiting behind him and none of the kids said anything. I really worried since they had to wait a much longer time for their turns and had less turns than the other group because of Nick but everyone was kind. If an kid complained I did not hear it. I think this really is a great neighborhood, if the kindness of the kids is any indication I feel certain it is a great neighborhood!

The best part was Nicholas and his cheers of pure joy as he went down! All the kids liked it but not screamed like he did. It almost made me cry! He was so happy. I was so scared and happy and proud. Nicholas is such a strong boy. None of this has been easy for him. Moving has complicated things as well but he still putting himself out there and trying.

He hasn’t gone to camp every day so I am not sure how often he will attend but I will be happy if he goes to some days. Yesterday there was not camp but there was a great celebration called Games on the Green, which was mostly races for all ages, some silly races and even dog races. Our crew really wasn’t into the competing but Christopher participated in a bicycle parade with his group from camp and Nick and Steven did the three legged race. They of course were not the fastest, certainly didn’t come close to winning but seeing them out there, seeing Nick just do it was the best. It was a clear sign to me that he is moving on and that the best thing possible for him. Leg lengthening and reconstruction for fibular hemimelia round three is almost completed. Our family made our move and we love our new community.

We’re moving on and it’s bittersweet in so many ways. We already miss friends and family in PA and we’ve only been gone a week. I’ll try to focus on the sweet, get the kids ready for camp and keep moving on.

17 centimeters

Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!

Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.

Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!

When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.

Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!

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

The home stretch… I hope!

So this should be the home stretch. Nick had an appointment with Dr.Standard Thursday and the smile on Dr.Standards face while looking at Nick’s leg really says it all! His right leg seems to be about 1cm longer than his left! This was unplanned and unexpected. It also made the news that Nick’s bone is not consolidating as well as we would like much easier to take. There’s really nothing wrong. It’s not really been that long but we still hoped for more.

The fixator could come off next month as planned but Nick would need a rod put in his bone to protect it. I’ve heard this is often painless and no big deal but sometimes it can lead to painful setbacks. As in the past I am inclined to let Nicholas decide what to do. His options being 1) take off the exfix and have rod inserted or 2) leave the exfix on another month or so and then hope he won’t need rod at removal or 3) just wait till the bone completely consolidates.

So far my boy has chosen option one. He’s seemed a little down lately and I think loosing this hunk of metal would help! He also still has pain in his foot when he walks, which the weight of the fixator could be contributing to. His new shoe insert helped with the pain in the bottom of his foot but now his heal hurts because it makes his shoe a little too small! I’d really like this insert to work out! Nick needs to walk pain free! And considering it was over $400 and not covered by insurance it would be a pretty penny to have spent!

On the home front the specifics of our move are still not settled and Steven is obviously still traveling and I’ve been unraveling just a little bit. I think I jinxed myself with my mental health post. I’ve gone back to therapy and even just one session was helpful. I needed to hear that all my stress and feeling’s about surgery/moving were ok. Why do I need professional to tell me this I do not know. Maybe it is too darn hard to admit to those I’m closest to that I am struggling (well some of you know and now anyone who bothers to read this knows). I often think I should be able to handle this or I just don’t want to ask for help. I hate asking for help. Maybe that’s reason alone to go to therapy.

So right now I am doing my best to simplify and say no to anything that will add stress or items to my to do list that are not necessary. The definition of necessary at the moment is “what my family needs” and of course friends if they are in crisis. Otherwise I am not available.

I’ve even taken a Facebook hiatus. I have Steven checking in on Fibula Hemimelia and Limb Lengthening Awareness. I feel a sense of responsibility for the group I created and I want to make sure folks are getting what they need. The group has over 540 members! Its awesome and seems to really be helping families connect and face the future.

My tenure as board president of our church is ending just in time and I’ve not been called in to the nursing home, where I am a companion for dying folks, in a while. I’ll hate to say no to that if they call but the times I go are usually at night and I need to sleep more! Plus there are others in the program they can call on. I am so grateful for the time I’ve spent as a companion. I hope to find similar volunteer opportunities in Delaware.

So while much of our future is unknown I am comforted by many things, including the cute little boy next to me who needs me to help him play Mario vs. Donkey Kong on his Nintendo DS. Time to get to what’s necessary!

Red Pin Sites Tonight

I am thinking it’s because we’re using a different brand of antibacterial soap. Nicks been on antibiotics for what seems like a long time now. Once pin site infection seemed to start on the tail end of another. Those have improved although he has a wire that is a problem. At least it looks that way. It’s on the top and the top wires do tend to be the most problematic.

At the moment I think everything is fine and just off looking. Tomorrow I’ll be taking Nick to pick up the insert for his shoe. His foot had been bothering him to the point that he was still hopping and in the last few days he’s been walking more with it only hurting a little. If this insert does not take this pain away completely I don’t know what we can do. Pain when walking was one of the reasons this surgery came sooner than we’d planned. I haven’t even asked Dr. Standard what would be next.

Overall Nicks mood has been good and we’re in that familiar rhythm of fixator life. I’ve been trying to do leg wash during the afternoon when the baby naps since it’s easier and then if something is wrong I’m not calling the on call doc at 9pm. Speaking to Allison Dr. Standards PA is so much easier. She knows Nicholas and she knows what’s important to ask. On call docs probably have a protocol but it ends up being a much longer call then necessary sometimes. Sometimes I have no clue who they are! It’s funny when the person I am talking to does not know Nick at all. I always figure they’re new cause he’s a rock star at Sinai…. Hahahaha! Kidding. Sort of!

Family life is still a bit of a roller coaster with Steven being in Delaware more and more. We’ve got an offer in on a house but no word yet. We’ve already gone back and forth a bit so I am really hoping this is the end. We found an amazing area and I guess part of me wants to move on. I hate living in limbo and I much prefer to live with my husband full time. Four kids and one fixator and one parent is hard. I know there are single moms out there who do this all the time and my hats off to you and my heart goes out to you.

Hopefully the red pin sites look better in the morning. There was not any pain and not any drainage so redness alone is not a huge red flag. We’re just ready for this to be done. Nick is very ready. My boy is tough and patient but he needs a break!

Back to School?

Yesterday I asked Nicholas if he felt ready to go back to school. His response didn’t surprise me much “Yeah Mom I’ve only been waiting for you to ask me”. I’ve made an appointment for him to get fitted for his shoe insert on Thursday and I think Friday he’ll go back.

Nick is ready. I am not. I am so happy having him at home. Aside from it being hard to get out and about. I suppose I will be able to get more done during the day. Still I will worry! To be honest Nicks at home instruction experience has been one of the reasons I have decided to homeschool, or at least to try it for a year. It sounded a little crazy to me at first. Even felt crazy to be considering it but the more I research the more I want to do it. I don’t think public school is evil or anything. I do think it’s an awfully long day considering Nick could learn everything he needed in an hour or less. It’s just not the only way to learn. Once you start thinking outside the box it’s hard to get back in!

I would also love for my kids to have some choice in what they learn. I would love to have more time with them. Being gone seven hours a day five days a week changes things. I am often sad that Charlotte is in school while the rest of us are at home together. I know it suits many people just fine but it’s never sat well with me. I never look forward to the end of summer. I don’t think it’s as easy as people say it is to have your kids in school. I know I have taught them many things, I fell confident we can learn together. I know I will have to work hard and be disciplined. I believe it’s worth it.

This is not to say that I don’t love and respect teachers. I know what they do is takes it’s own skill and education. It’s just not the only way to learn. I don’t compare myself to teachers at all. My kids have had amazing teachers. Really! I have loved them. Nicholas’s current teacher has literally been perfect. She was the turning point when Nick came home from surgery and wasn’t himself. She makes schoolwork fun. She is a beautiful, smart and kind person. All you could ever ask for.

Sadly she and many other teachers in our district are either loosing their jobs or being shifted around. Like many areas, central PA schools are suffering financially. My children have a wonderful school. I respect the principal and pretty much all the staff I have encountered. They have all been kind and helpful in handling Nicholas’s surgeries and anything that has come up. But with these cuts I know the school will suffer. They will be loosing some amazing educators. How could the school not suffer?

Many experts say our education system is broken. I’m not going to worry about quoting anyone here. You can google yourself. When my husband and I tell people we’ll be homeschooling the only real argument against it we get is “what about socialization?”. If socialization is the best thing a kid can get from public school there’s more wrong than I thought.

All I know is it feels right to us. We’re moving to an area of Delaware with so many amazing homeschooler activities and groups. There’s a coop, there are weekly playground dates, monthly roller skating, and many other group classes and activities. We’ve received invites to a beach day, canoeing classes, a family farm day and more. We won’t be sitting at home reading textbooks. We’ll be living and learning together and in community with others. There’s even a yoga and meditation class this month for 6-9 year olds! In addition to a class at the Apple store on Garage Band. I wish we were there already to take these! Really there are so many different things. I am sure we won’t be able to do everything because of time and/or money but there are options.

So hopefully Friday Nick will go back to school. At least for a few weeks. School here ends in the beginning of June. He’ll likely have his fixator till after the end of school which could work out since removal would have been more missed school!

I am so nervous but if he feels ready I have to be ready to. When we told Charlotte she hugged him so hard she could have knocked him over! Still as happy as she is going to be is comparable to how sad Christopher will be when his big bro is gone all day. He and I can comfort each other!