“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!

Two More Months

Thursday Nicholas had an afternoon appointment with Dr. Standard. His x-rays looked great. His leg looks so very long and straight! The bone is not filling in or consolidating as fast as I planned for it to so while I thought Nicholas had about a month left in the fixator its’s actually two. As has happened in the past my plans and reality just don’t match up!

In the long run this could work out better for a couple of reasons. One ofcourse being the longer his leg is in this pricey hunk of metal the less likely he is to break it when it comes off. Dr.Standard knows what’s best in this area. The last thing we want is for Nick to have a fracture after all this is done! So that’s that. Plus if we wait long enough Nick may be able to go from fixator to removable cast! That would be wonderful in comparison to giant cast which is not removable. I imagine Nick sleeping and bathing and swimming with his leg free and it makes another month of the fixator feel even more worth while. As if the bonus of not breaking his leg wasn’t enough!

Thursday’s visit was even better because our cousin Kent, Auntie Liz and Uncle Jim were there too! Kent sees Dr.Standard for Perthes. I’ve probably written about that before but the fact that Dr.Standard is the best person in the world for Perthes and Fibular Hemimelia is pretty awesome. Kent is doing great and had his own wonderful appointment. He is Nicholas’s idol. They were finishing each others sentences. I love seeing them together almost as much as I love being with my Aunt and Uncle! A hug from someone who loves you and knows you so completely is a little piece of heaven to me. Nicholas has been big into hugs these days, which is fine with me! I’ve got him saying “A hug and a squeeze if you please”, a phrase from my childhood that can feel so bittersweet with so much of my family gone. Hopefully resurrecting it in our house can make it more sweet than bitter.

So all in all Nicholas is doing well. He’s walking much more than he was. We do have go get him a shoe orthotic/insert though because he is still having foot pain when he walks, even for a little while. If the insert works I will try not to worry. Dr.Standard says he just may not be a barefoot person. But Nick really likes being barefoot now so needing an insert long term could be upsetting to him. Sometime next week we’ll have to go back to Maryland to get it since we were not happy with Geisinger’s work with the last insert. It didn’t help at all and from what Steven told me the second appointment to get it did not go well. The first had been great.

In addition to going to MD for the insert we’ve got to go to Delaware to check out houses. Steven’s working three days a week there now and it looks like come June, it will be five. I try really hard to be positive and not think myself into misery but right now having him gone so much feels like a lot. With Nicholas not totally mobile we don’t leave the house more than we have to (when Steven’s not here). I can’t push Nicholas in a wheelchair and Bess in the stroller at the same time (there’s also Charlotte and Christopher to keep track of). I do my best not to be grouchy the kids (or in the least apologize when I am) because of the daily frustrations. It is hard enough for them when Steven is gone!

Nicholas and Charlotte are not happy about moving. Steven and I are just going with it. Trying to see the positives. There really rare positives. But to move forward we’ve got home projects to finish so we can get this house rented or sold. Most of this is stuff only Steven can do, so even when he is at home he has regular work (since two days he works from home) to do and house projects and there’s regular day to day stuff! I still feel incredibly fortunate that Steven has a good job in Wilmington but the whole moving to Wilmington thing while Nicks still in the fixator with Steven gone so much already has added another stress dimension to our lives.

Managing the stress is the best we can do. Even when I am up till midnight with one crying or sleepless kid, or two, I still feel such gratitude. Ok maybe not every second but I am grateful for the moments of clarity when I see that if this is what a hard moment is for me, I am pretty lucky. If I am annoyed because I didn’t get the dish washer loaded I am lucky. If I am tired because I spent the day caring for my children I am lucky. How many parents face so much more and how many people aren’t here to feel annoyed and tired at the day to day things! I sometimes say “if you’re lucky enough to be breathing, you’re lucky enough” (I am sure it’s someone else’s phrase). I like Nicholas’s version even better “if you’re lucky enough to be hugged, you’re lucky enough”. Indeed!

Leg Watch is Winding Down!

Thank goodness! Nicks leg is looking altogether awesome again! After my last post that it was getting better it started to look redder again and I was so nervous. I talked to Allison from the RIAO and she reminded me to keep Nick’s leg elevated. This helped! She thought we could watch some more but said if it wasn’t getting better we ought to just call her and let her know and head down to Baltimore the next morning. That would have been Thursday and that moring Nick’s leg looked a whole lot better. There was still redness around two pin sites and beyond them really but it was not a whole hot-red leg!

I haven’t talked to Allison since Thursday. That’s the true marker of things being well. Her calls really helped me know that things would be ok. Cellulitis really is common and infection as a complication of leg lengthening is common but goodness when it’s your kids leg turing red, hot, swollen and shiny it does not feel common. Nick was so tired of me being on “leg watch” and “temperature patrol”. Really I would not even put a cover on his leg because I wanted to be able to see it easily and constantly.

All in all it made for a stressful week! I volunteered in Christopher’s class on Thursday and I had planned on asking if Nick could come with me. That plan was out for many reasons. One being that when Steven went to Wilmington for work he took the wheelchair and walker with him! This pretty much meant I could not take Nick anywhere. I had to figure out how to get Charlotte and Christopher to and from school. These little daily things can feel like big stresses under the circumstances. Thankfully between, Tara (sis-in-law), Diane (mom-in-law) and Beth and the McGovern’s it all got done!

Charlotte herself has been such a trooper in all this. She is the only kid in school all day and then it feels like we’re passing her around at times. The other day she said “Sad days seem to go on and on but happy days go by fast”. It’s so true but it made me sad to think she has enough sad days to realize this. She does worry about Nick and always wants to help him! Chris too, he likes to hold the flash light for me when I need it for pin care (this house has very poor lighting). Even Bess was so excited when Nicks’s foot was freed! She loves to touch his “toe-toes” and when I was on leg watch she would come with me to check Nick’s “ator” or fixator. All four kids are so loving toward each other! There is nothing that makes me happier than to witness it.

Nick is still not weight bearing. Dr. Standard wants him to try a little each day and generally he is allowed to, but he does not feel ready. With the infection this week we’ve not worked too hard to encourage him. Next week we’ll try harder. He can’t go back to school till he is stepping some. He’s gotten so comfortable having school at home with his teacher, Miss Spurr (his actual classroom teacher). She is such a wonderful teacher and person! This year has been so much easier on Nick because of her. I never thought he would be out of school for so long and yet he’s doing great. He really enjoys her company. So often I hear them laughing or I overhear Nick giving an answer to something and I marvel at how bright he is! Miss Spurr is a marvel too! Every child deserves the kind of teacher she is. Our family has loved having her around. We threw her a very little surprise party (just ice cream cake, some tiny gifts and the kids yelling surprise) for her birthday a few weeks ago and all the kids were so excited!

Miss Spurr reminds me of all the people that have come into our lives when we needed them. There are also those who have been supporting us from day one (like our fabulous family and friends). I have so much gratitude to so many and so much admiration for the Miss Spurr’s and Dr. Standards’s and nurse Lee’s of the world who can do such meaningful work so brilliantly! We’re so lucky to have them in our lives!

Cellulitis or Dermatitis? Either way it’s getting better!

Last night things got scary. Nicholas suddenly had a fever of 101.3 and it was clear the redness covered the whole front of his calf, was spreading to the back, with major swelling near his bottom three pins. In particular next to two of his old half pins with a lot of drainage. He wasn’t feeling good either. We gave him a dose of roxicet and by the time I talked to Dr.Standard his fever was down to 99.5. The fact that Nicholas’s leg really didn’t hurt and was kind of itchy was complicating things. Dr. Standard thought it could be a delayed dermatitis possibly from something they used in the surgery. We gave Nick a large dose of an antihistamine and watched for a while.

IMG_3171

We didn’t notice a change in his leg and Nick said he felt a little nauseous but he said it was maybe just the hungry kind of nauseous so I gave him some mike and bread with butter. That helped his belly so we gave him his fourth antibiotic dose and put him to bed.

Before I went to sleep I checked his leg and it was not better but it was not worse. By five am when we gave him his next antibiotic dose his leg looked less swollen, a little less red and certainly not spreading! What a relief! Nick woke up about 7:50 which is pretty late for him and was willing to stay in bed with his DS and a little breakfast. Thank goodness his Aunt Tara was able to pick up Charlotte and take her to school. I hated the idea of making him come with me to drop her off and then I realized Steven went to Wilmington with Nick’s wheel chair and walker in the trunk of the car!

IMG_3173

I had thought we’d be heading to the RIAO this morning. I can’t explain how it felt to be so excited about his long beautiful leg and then watch it swell and redden! Nicholas has worked so hard. He’s really had enough of this fixator so complications right now are beyond unwelcome. Now that the antibiotic seems to be working. Assuming it wasn’t the antihistamine which I guess we can’t know for sure till we talk to Dr.S or Allison… I never asked when we should give Nick more but if the swelling comes back again since I haven’t given it to him then I guess we’ll know.

Right now I am just so grateful my boy’s leg is looking better, he’s feeling ok and we’re home for the day. This fixator business is like a roller coaster ride sometimes but the light at the end of the tunnel is still shining bright. I still take a moment here and there to imagine Nicholas as a seriously handsome and tall young man with two seriously long legs! I imagine him looking down at me and smiling. He may be more than a foot taller than me!

Last night when Nick was feeling down I reminded him of what it’s all about, having his legs equal and strong and I told him that he is the strongest and bravest person I know! I reminded him that every day I look at him and think OH MY GOD that kids is awesome! His response was “And I won’t be shortened. I’m keeping my length”. Even in the hard moments Nick still has his eye on the prize and is willing to work for it! That’s my boy!

The Good, the Great and the Ugly

Wish I had updated sooner. Now there’s much to remember! First off the “Good”… Nicks ninth surgery went well. Nick was happy to have the troublesome pin out and overjoyed that his foot was free. He woke up calm and was so very happy to grab hold of his foot. He asked me to massage it quite a bit and was not in pain after surgery. Unfortunately in the evening his blood pressure was high. The nurse said he had probably gone too long without pain meds and that could be the reason. After a dose or two of roxicet it went down but it was a scary couple of hours for me! We stayed overnight so Nick could get iv antibiotics as a precaution. Having new pins put in is different than just getting parts off.

It was interesting staying in the new children’s hospital. The room really did feel spacious and despite the fact that I had two comfortable new sleep options I ended up in bed with Nick at his request. He’s a pretty cozy guy himself so it was ok. I was so worried about his blood pressure I’d have done anything to make him happy and keep him calm!

We had some familiar nurses and some new faces for us. Either way everyone was kind and very apologetic for the blips here and there when they couldn’t find things or had to go back and forth. I think it went amazingly smoothly considering how new the hospital is. It was the first shift there for some folks.

Nick had the playroom to himself again and we had fun playing wii (he even set it up). Later we played another game system in his room that I can’t remember the name of and watched a Pokemon movie. Nick wanted to stay another night! Nothing like a big flat screen, cable, video games and movies!

Since we’ve been home things have gone well. Nicks not weight bearing yet but he’s getting there which brings me to the “Great”… Nick had a great appointment with Dr. Standard yesterday. I was worried about Nick not weight bearing but Dr. S pointed out that his foot is functioning very differently now. It makes sense that it hurts to put weight on a part of his foot that didn’t really function that way before this surgery. Nicks ankle also isn’t mobil at all but Dr. S said it is normal and could be several weeks till that improves. All of this was a big relief! Then Dr. S said he thinks Nicks legs are even! We won’t know for sure till he’s standing better but even if his legs are not exactly equal, the fact that they even look to be equal is awesome! His leg does look so long! It’s great! I need to post some before and after pics! Just seeing how happy Dr. S was with Nicks leg made me happy and Nick’s grandma too (we had a really full day out in Maryland the three of us).

And now for the “Ugly” we noticed a red patch on Nick’s leg. It didn’t hurt and Dr.Standard looked at it but at that point it was unremarkable. This morning it was ugly, swollen, redder, hot,a little itchy and spreading! We started Nick on antibiotics and got in touch with the RIAO. I had never seen an infection like this. It’s cellulitis. Most likely not a big deal. We’re watching closely (I drew little dots around it to tell if it spreads) and if it does not stop spreading by eight tonight or improve some by tomorrow morning we’ll be calling back. Allison, Dr.Standards PA, said she would call tomorrow anyway. I’ve probably written this before but I do think she’s great. She has a nice calm tone, answers my questions and leaves me feeling like I know what I’m doing which at this point is watching and trying not to freak out but really it is ugly! The swelling looks painful but Nick says he’s not in pain and he has no fever.

If the antibiotics kick this infection I think we’ll go back to being great! Yesterday we got to meet two beautiful new born baby girls! We got to chat with some RIAO friends. We didn’t wait terribly long despite the fact that we showed up at 2pm apologizing for being late for our 1pm appointment only to find out our appointment was actually at 11:15am! Oh my goodness I was embarrassed. It shows how out of sorts I have been to make that kind of mistake. I have been really tired, not sleeping great, not eating well, not exercising (which I never did much of anyway but I’m thinking I need to). I feel sluggish and stressed but I think surgery, Steven’s new job and the whole moving thing are reason enough to feel this way. I just have to do something about it. At the moment that something will be getting the kids ready for bed, getting myself a glass of wine and later on watching the season premier of Mad Men! Here’s hoping the kids and Nick’s infection cooperate with my plan!

Nick’s Pre-Surgery Tour

Nick is having the foot portion of his fixator removed tomorrow and some additional wires removed and a half pin added and possibly a half pin removed that is bothering him so he might need an additional half pin. Yes that was a completely grammatically incorrect sentence but it is what’s happening. He’s mentioned his nervousness to Marilyn and she offered to take us on a little tour of the new children’s hospital. It is awesome! Nick is not as nervous and it was a wonderful distraction. Now he’s got something to look forward after surgery! He can’t wait to get back to that playroom!

I can’t post video on this blog yet but I have posted some videos on the International Center for Limb Lengthening Facebook Page and on the Fibular Hemimelia and Limb Lengthening Awareness Facebook Page.

Touring was a bit emotional for me. I realized how my perspective is so different from your average parent because this will be Nick’s ninth surgery. I know there are children who have gone through so much more than Nick and moms who might think nine surgeries is nothing but it feels like quite a journey. There were so many familiar faces in this new gorgeous setting. Even the hallways are bigger. There is a space for parents to sit and relax. Sometimes you just need a moment out if your childs sight but you dont want to leave the unit or you dont want to cry alone in a restroom. I’ve been there and its rough! Just having a place to “be” is wonderful!

Compared to the usual hospital room the rooms are enormous! And it’s all so pretty, bright, colorful and clearly created with children and families in mind! It’s no wonder considering it wad created with input from the staff and patients. Laura Cohen, a child life specialist run the show in the playroom and it shows! I found out today that she has been at Sinai about as long as I have been alive! I was shocked that she had been there so long but looking around the room you could see a lifetime’s worth of experience coming to life. No one could know better than Laura what our kids needed. She has always impressed me with way with the children and now I am so grateful to her for helping to create a place my boy is looking forward to going to. And honestly he looked forward to the old playroom but this is an whole new kind of excitement.

Because I did so much research for the job as a patient and family centered care coordinator I applied for a few months ago I could totally see the concepts of patient and family centered care come alive as we toured.

I’ll write more about Nicks surgery tomorrow. Thoughts and prayers are very much appreciated. Dr.Standard said Nick will be the very first surgery. It will probably start around 8am. Having an appointment today worked out great. Dr.Standard is so calm and kind. His confidence also made Nick feel good. Eight years later we are still so grateful to have him care for Nicholas.

I know we are in the best possible place for a kid with Fibular Hemimelia. There are so many amazing people here and now they have an amazing facility check out The New Herman & Walter Samuelson Children’s Hospital at Sinai

5.7cm and Nick’s third lengthening ends!

5.7cm!!!! We could have continued and gotten to the 6cm goal but Nick said enough and what he says goes. He’s not having any pain really and he certainly isn’t taking any pain medicine. The pesky pin site infection seems to have cleared up just fine. But Nick just wants to get to the healing part of the process. He wants to go back to school. 5.7cm, plus a straightened tibia and a reconstructed ankle is pretty wonderful. Nick’s working hard and it is important for him to have a say in this. We’re a team and I like letting him lead the way when we can.

Next week he’ll have a small surgery with Dr. Standard to get the bottom portion of his fixator off and his foot will be free! He says the foot part is the most annoying so this will make him very happy. He’ll also have a wire removed from the bottom of his leg but he will need a half pin put in to add support.

In general it was a great appointment today. We were at the RIAO for a long time but it’s because we were making plans and Nick needed an additional xray because it turns out he has some knock-knee that needs to be corrected. Dr. Standard needed to measure it to create a new small schedule of turns. The lengthening is still officially over since this wont add length.

It is such an amazing journey. None of this is easy but none if it is as scary as I imagined it would be. It is also so wonderful to be at the RIAO where this rare condition is so normal! Nick is one of hundreds of children they have treated for fibular hemimelia. Seeing other people in fixators really does make it seem like less of a big deal in a way. It also helps to have support and encouragement. Marilyn and Lee are two of my favorite people. The RIAO would not be what it is without them. We got to chat today and it reminded me of how lucky we are that they are there for us!!!!! Dr. Standard is wonderful of course. I’ve written that plenty of times and so have other parents but he does not work alone. There are all kinds of necessary people at Sinai. Today’s included the valet parking men. Sadly I am literally not capable of getting the wheel chair in and out of the car. They are always so helpful! It makes my day so much less stressful. It is totally worth the usual $7 plus tip!

Then there was the stranger in the cafeteria who carried our lunch tray because she saw me struggling. That kind of kindness make such a difference! I would never have asked someone to carry it for me. She came right over and helped. Thank you random lady!

This surgery has been hard for Nick in a way that the others were not. He understands so much more but he still says it’s worth it. He can judge that for him self now and I am so glad he feels that way. I feel it too.