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Today we got back from a great little vacation. We were upstate NY for a few days and it was perfect. We swam, relaxed with family and ate great food that I did not have to cook! Nicholas did really well. He is still not walking like he was before the removal of the foot plate but he is trying. He wants to walk but gets tired because he still is not fully weight bearing on his right leg so he limps. He really is self conscious about it. He told Steven that he did not want his cousin Kentie to see him limping and that he was embarrassed that he is not walking. We did our best to reassure him but clearly it is bothering him.
Swimming was great and was a great break from walking and the playground, which is where he spent good deal of time too. He climbed all over the place without any trouble and met lots of new kids and answered lots of questions about his fixator. At one point someone asked him about the cover he had on it and he thought the woman as asking him to show her what was under the cover so he told her “I like to keep that private”. It was cute really.
Our only real drama was that a set screw came off of one of his half pins. The previous night Nicholas had banged his leg really hard on the bed frame and even bled around one of his wires. Nothing appeared to be wrong at the time and I am not sure if this had anything to do with the set screw but Steven fond the set screw off in the morning. I would never have known what it was had I found it so I am so glad it was Steven. I asked him to call Dr. Standard because he could explain it much better since he actually knew what it was. This explanation is really inadequate too! Dr. Standard returned our call and left a message saying that Seven should put it back in and to call him back if there was any trouble. Thank goodness the place were were staying had an extensive work shop where Steven found an Allen wrench and secured the half pin.
Crisis was averted and we really had a lovely time. We had to come home a bit early for Nicholas’ kindergarten open house. New situations do make me nervous for him so it was important to me that we be there. Worrying that someone will say something that will hurt his feelings occupies me more than it should. I wanted him to get to meet some kids before the first day since we really don’t know anyone else starting kindergarten this year. When we got there I found out that his teacher did not even know about his fixator. I could not believe she had not been given that information after all the people I talked to and paper work I filled out. It irritated me that I had to explain it all to her when we were there for Nicholas to meet her, meet some kids and see his classroom. He walked away and introduced himself to a shy little boy while I explained things to his teacher (I am sure this explaining has gotten boring for him to hear). She was very nice and I am sure everything will be fine but I will still worry.
Many of the kids played on the playground after the open house and Nicholas was no exception. Although I was the only parent who was standing within earshot of the kids. I knew someone would ask him about the fixator, plus I wanted to be close by in case he fell or something. When he was asked about it I did not hear what the question was but I heard Nicholas say “I’m okay. It’s just an external fixator for leg lengthening” then they went back to playing and it never came up again. Now I just have to believe it myself.
Nicholas’ physical therapy appointment was at 8 am so we had an early start today. It is a forty five minute drive giving us plenty of time to chat. We passed the time by picking a name for our future cooking show and started working on the theme song (cant share either because we do not want our fabulous ideas stolen).
Nicholas did his usual pretend souffle making in the play house in the waiting room. Today’s souffle was chocolate mineral. I am not sure where he comes up with this stuff but this is what he plays each time in the waiting room.
Stretching went as usual and we showed Ms. Kathy how great Nicholas’ leg looks with less wires and such. She agreed with me that is looks so much less swollen and that the bottom of his foot is as smooth as a baby’s bottom. Over all Nicholas certainly did well. He walked on a balance beam with his walker, somehow without putting weight on his right foot. He attempted stairs and at least let his foot rub the carpet on the stair. Otherwise he hoped. He is a champion hopper these days.
Nicholas was not his usual, I’ll try anything that self. He did have some fun and I learned some interesting ways to help Nicholas’ foot feel less sensitive. Such as putting his feet in a bowl of rice or beans and having him use his feet to search for a small object hidden in the bowl. Ms. Kathy also said to let his foot feel all different textures. Such as sand, a feather duster or pebbles. Tonight I traced letters on his foot with a q-tip and he had to guess what they were. He did great. And we rubbed cotton on his foot. He also had his foot resting on a towel for a bit but didn’t really like how that felt. I had already washed his leg for the night so I did not want to put anything on his foot that was not clean.
Ms. Kathy has such a great rapport with Nicholas and he did the most weight bearing he has done so far with her. We’ll go back next week and see how he does. I just want him to be able to enjoy the rest of the summer. Maybe we will have to be more creative in terms of things to do that don’t require walking. For now it’s rice and beans! I am sure Charlotte and Christopher are going to want to get in on it, so I think we’ll have to take this game outside. Maybe it wont be so hard to think of fun things after all.
Apparently it is perfectly normal for Nicholas to not start walking for 3-4 weeks after getting part of his fixator removed. I have been stressing the walking for nothing! He has at least been putting his foot down a bit more and he said it does not hurt at all. I am still going to encourage him but I wont stress it. I am taking him to physical therapy tomorrow and I am not sure what Ms. Kathy will have him do since he is not walking but he loves going so it should be good no matter what.
Thursday night I had to take the gauze off that was wrapped around Nicholas’ foot. He was upset and totally scared to have it all taken off. He cried “I hate my fixator. I wish my leg wasn’t original. Why cant I be like other kids who don’t have to have a fixator and don’t have to go through hard stuff”. Hearing it was heart breaking. I responded “I know this is hard and I wish you didn’t have to go through it too, but remember all the kids we saw at the hospital and the pictures I showed you of other kids in fixators. You’re not the only kids who has an original leg and hard stuff to go through and I know having a fixator is a lot of work but look at your long leg. Even though it is hard your fixator has done a good job and you have done a great job.” I cant really say he calmed down at this point. Steven and I did the best we could. I even gave him candy to eat while I was washing his leg but nothing really helped. When the gauze started falling off, thanks to the shower sprayer, he realized that it didn’t hurt he and he saw his foot free of pins and Nicholas was excited! Still anxious but excited.
It is the hardest thing in the world for me to do something Nicholas does not want me to do or to do something that hurts him or scares him. I have had to do a lot of that throughout this experience and I would not wish it on any parent. Having leg lengthening is hard for Nicholas in many ways far beyond anything I go through as a mom. But this is the hardest it gets for me, having my boy screaming and crying “STOP MOMMY STOP”
When everything was finished Nicholas said “Mom I don’t hate my fixator anymore, I was just scared of it hurting but now I have scabs instead of boo-boos” (scabs are a very good thing compared to wires and boo-boos). I didn’t want him to think that he was not allowed to be upset so I explained that it was ok to hate his fixator. He could be mad and sad and did not have to be brave all the time and that we loved him just as he is even though I wish he did not have to go through this I would not want to change him one bit. Then he said ”I love myself the way I am too.”
I thought having the bandages off and a few days pass would get Nicholas moving. Now it is Sunday night and he still has not walked. He is really scared to and he said it feels strange. We are trying to motivate him without pressuring him but it is not easy. After the fixator was put on in March, trying to walk was part of his physical therapy. We had to make him do it. The first day or two was difficult but at least he was some what willing to do it. Now he is either in his wheelchair, uses the walker or hops. I have to ask Dr. Standard what we should be doing. The hopping is really dangerous and he fell once doing it so now he scoots. Christopher has even started copying Nicholas’ scooting he does it so much.
I thought getting a big part of the fixator off would make things easier for Nicholas but he was walking like crazy before Wednesday and it is so hard to see him sitting around now. I realize he will walk eventually but knowing that does not make this any easier. I will call Baltimore tomorrow to see what Dr. Standard thinks and we will make an appointment with Ms. Kathy his physical therapist. I hope Ms. Kathy can motivate him some. Honestly I think she will be shocked to see him in the wheelchair again.
We had a nice outing to church today because they are wheelchair accessible, walker friendly and so very encouraging. They have followed us through this journey with prayers, thoughts, and kindness. They even picked Save-A-Limb as the charity of the month (to learn more about Save-A-Limb see the links to the left). I made a small poster and gave a short talk to explain what Save-A-Limb was. It was very emotional for me to stand up there and talk about my boy. The funny thing was, after I finished and coffee hour began, people started coming over and thanking me. They thanked me for sharing and telling them about it.. I thought it was the least I could do if they were willing to contribute to this charity that means so much to us.
I explained that Nicholas could not tell them about it himself because he thinks it is just a day to celebrate kids in fixators and such. He does not realize that there was an alternative to lengthening. I did tell him that the money we raise is to help kids get lengthening who could not afford it. He told me that if we win $5,00 on a Food Network Challenge (he thinks this is likely to happen don’t ask me why), he would like to keep one dollar to buy a wii game for Charlotte and a hot dog dinner for our family. Then give the rest to people who need it more than us. That made me wonder if maybe he could have explained it well enough himself after all.
Kitty, one of the loveliest members of our congregation, let Nicholas and Charlotte help out during kitchen clean up. Nicholas was in his wheel chair and she let him hold things and wheel them over to the refrigerator for her. I know this made the process take at least four times longer but you could tell that she did not mind one bit. That kind of kindness and attention is so wonderful! Kitty had Nicholas hopping around a few weeks ago at the church yard sale and it was so fun to watch him having fun! Today Steven was in a meeting after the service and keeping track of the three kids was not easy. Did I mention that they had munchkin donuts for breakfast? This is so not normal for us that Nicholas asked “but mom wheres the healthy stuff?” We are renovating our kitchen so our meals have not been so great lately. Still I am sure you can imagine the kind of energy they had after the munchkin breakfast.
So this is where we are right now. Thankful that the surgery went well. Still a little frustrated. The light at the end of the tunnel is that Nicholas only has 4-5 weeks left in the fixator. That’s it.
Pre-op is an interesting area and experience. Basically 20 different people come over and ask you the same few questions and you sign a bunch of papers and you wait. Then you wait some more. Luckily I had the life of the party to wait with. Nicholas was in a good mood even though he was nervous which he told me a few times. I tried to keep him busy and distracted. He chatted with just about everyone that came to see him. We told Thomas stories and played whenever we were not answering questions.
When Dr. Standard came over Nicholas was really excited and apparently he screamed “DR.STANDARD”. I didn’t think he was that loud till the nurses came over after to inquire about the excitement and inform me that Nicholas has startled everyone in the vicinity with his enthusiasm. They said that they had never seen a kid react to a doctor that way especially when they were about to have surgery.
The surgery was to remove the bottom portion of Nick’s fixator, the part that was on his foot and ankle. Everything went well and Nicholas was a trooper. I called it a smallish surgery on my facebook page right before we left for Baltimore but when I was kissing him goodbye in the operating room it did not feel smallish at all! That it the killer moment where I struggle to keep it together so that he can fall asleep as calm as possible.
During surgery I was alone to wait. Steven had Charlotte and Christopher at home because it would have been crazy to bring them. Luckily Marilyn, the Patient Liaison came to chat with me and explain the time frame of things and such. It was just so nice to see a familiar face and have someone to talk to. It eased my anxiety some.
Marilyn was actually the first person I talked to from the RIAO other than the doctors, before Nicholas’ first surgery. I was really scared that the surgery would make him loose his sparkle. He seemed to have such an amazing personality and I worried that the whole process would hurt him so much that he would loose that. Marilyn eased my fears and told me about other kids and how they seemed to shine even brighter and do such wonderful things after going through lengthening. I will never forget that conversation. It is hard to express your biggest fear but Marilyn made it easy for me to talk about it and she made me much more confident that Nicholas’ personality would still sparkle when all was said and done. In regards to the current surgery she said that although Dr. Standard’s part was quick, I should not be surprised if it took up to two hours (Luckily it was well under an hour).
Nicholas was awake in the recovery area before I got there. Not a good thing and it was made worse by the fact that Nicholas remembered those last moments before he fell asleep (he remembered calling for me through the mask they had on his face and I remember that part too). I think because the surgery was so quick he came out if it very alert. He told me that he was scared because I wasn’t there when he woke up and that the post-op area was creepy. He did calm down relatively quick though. A few sips of a Capri Sun juice pouch go a long way. Nicholas was confused about what had happened because he had blankets on and could not see his foot. When I moved the blankets and he could see that the foot plate was gone his smile shined through the tears!
We were lucky to get to see Lee, the coordinator of patient and family education, (can you tell I looked up the titles of the great ladies at the RIAO) in recovery. Lee is many things to many people I am sure, but for me I just could not imagine going through this without her. She pretty much is all knowing in terms of the RIAO and fixators. Lee answers all my crazy questions. Sometimes with very simple answers like, check out the purple book you got before surgery. That purple book is like a little lengthening bible and is invaluable. For the first surgery I think I read it over 100 times cover to cover never mind all the random looking up of things. Lee also does a class for parents while your child is in surgery to explain the fixator, pin care, and answer questions. Even when things go really well this is a stressful process. Going into it informed and knowing that Lee is there has made it less so. I never imagined before Nicholas’ first surgery that we would have such support.
So here we are at his fourth surgery. Hard to believe really but nice to have a lot of the process behind Nicholas. Looking at his leg I noticed that Dr. Standard took out other wires too. Not just the ones in his foot. This was an excellent surprise. Now Nicholas has 4 half pins and 1 wire. The wire is thinner and goes straight through his leg and the 1/2 pins are thicker and don’t go all the way through. When Dr. Standard came to see us before we left he said that Nicholas’ leg looks like it’s healing great! Now it was my turn to scream (but I didn’t). Nicholas’ next appointment will be in 4 weeks and at that point we can schedule complete removal!
Someone once said to me that they thought it was great that I treated Nicholas “the same”. I can’t remember what I said for sure but I remember thinking, ‘how else should I treat him’. From the day he was born I felt, with certainty, that everyone would take their cue from me, so I needed to set the tone.
But it’s not that simple. It hit me on Sunday when our minister, Barry Stopfel, was doing a sermon that largely was about differences (It was about more than differences but this is what I took from it on Sunday). Our differences, whatever they may be shape our lives. Our experience effects our perspective and how we see the world. Do we spend so much time worrying about seeing everyone as the same, that we miss who they are in the process. Fibular hemimelia is a part of my boy, maybe hard to miss while he is in his fixator or in shoes and long pants but it is still there because it has changed his life inextricably.
I have tried so hard not to make fibular hemimelia who he is. Nicholas only leaned the word a few months ago and I think I should have told him sooner. It almost seemed like things made more sense to him when he had a word for it. In the past when he asked why his leg and foot were different, I would say ” because that is how you was made in my belly”, or “that is how god made you in my belly”. I was so worried about him being defined by his difference without realizing that maybe he has been refined by it.
Fibular hemimelia certainly shaped me as a parent, from day one. First off I was grateful that his health was excellent because once one thing goes wrong, you begin to realize anything can go wrong and it is easier to be grateful for what you have. Secondly, I wanted to make sure to give him the best and strongest foundation of love at home, hoping he would then be better able to handle whatever happened when he was out in the world. I was sure that if we accepted him, just as he was, then he would accept himself too. And I believe he does. Nicholas does not hide his leg. He will gladly tell anyone about it. Fixator and all he is comfortable with himself.
Nicholas thinks we are all original in some way. According to him, I am original because I have a five head instead of a forehead (or because I am child size by his estimation). Wayne at church is original because he has a one hundred head (picture a handsome man who also happens to not have so much hair). Steven is original because he is lacking in the booty department, and so on. Is it the same as having fibular hemimelia? Not really, but to a six year old life is so much simpler (Nicholas asked on the fourth of July while talking about patriotism “why cant we just love everyone in the whole world”).
Simple? It should be. Accepting someone does not mean looking past or forgetting parts of them, which do make up who they are. It isn’t treating them the same as everyone else. Why do we need to be the same or be treated the same? None of us are the same.
I am so proud of my son for his strength and courage. Is he the same as all the other six year old boys? No. He has been through things most children could not imagine. He has compassion and courage beyond many adults I know. That is a part of who he is. Maybe it’s not because of fibular hemimelia and maybe it is. Who’s to say?
I am teaching Nicholas what I believe to be the same about everyone, although he has likely grasped the concept already, that we are all the same in worth and dignity and you can love everyone, even if it’s not the same kind of love, without ever having to forget or look past any part of who they are. Whether it be a smaller leg, a larger forehead or a booty-less back side.
It has been a tough week. Nicholas’ pin site infection seemed to be getting better but then a week into his prescription it looked like he was getting another infection in a different pin site. So it was time to up the ante in terms of antibiotics. The troublesome pin sites are on his foot and wont be there much longer. This week he is getting the lower part of his fixator off. We will have to go shoe shopping and Nicholas wants to get construction boots!
He also had some kind of blister-ish looking thing on his ear that required a trip to the pediatrician, who told me that he was already on the antibiotic she would suggest for such a thing but we should put a little bacitracin on it three times a day. But she gave no explanation of what it could be. I was worried that it was a boil. When I told doctor Standard about it he thought it was something viral and not related to the infection. It does seem to be much better but it really did have me anxious for a bit. Seriously, does the kid need to go through anything else right now!
Ah the kid, my boy, the point of this whole thing. He turned 6 today (yesterday by the time I post this) and I wonder why it is so bittersweet. Why can’t it just be sweet? Maybe bittersweet isn’t even the right word for this, I am about to cry because my baby is growing up feeling. Maybe it is but I don’t feel bitter at all. Still I do think having him be in a fixator for this birthday is certainly a reminder of how far he has come, how far we have gone as a family and the road still ahead.
When I was tucking him in tonight we talked about the night he was born. I suspect all kids like to hear their version of this story. But at the end I told him that I love him even more now because I know his personality. I told him that I loved his baby self because he was happy and calm and wonderful (really he hardly cried) but now because he is growing up I can really get to know who he is as a person. I told him how much I love his kind, caring, strong, fun, sweet, smart, beautiful personality!
We had a small celebration in the evening and I made him a Thomas the Tank Engine cake. I am no artist, so although it did look like a bright blue train, it did not look like Thomas. So I was not surprised when Nicholas looked at it and said “But it doesn’t look like Thomas” and I said “well I did the best I could to make it look like him” and his response came with a big smile ”It’s perfect Mom.”
That’s who he is, my beautiful boy, inside and out!
