My little parade leader!

Today was a great day. I got to see Nicholas and Charlotte in their school parades and Nicholas was the leader of his! It really was so adorable and so totally awesome to watch him walking. He used the walker even though he really can walk fine without it but he did not mind. His teacher had to tell him to slow down. I kept hearing kids say “hay look it’s Mario” or “did you see Mario” and “I want to see Mario”. I am so glad I ordered their costumes so long ago! Really it was overwhelming to see how well he is doing. I was just so grateful that he had the fixator off even though he could have done it I know it would have been harder or he might have needed the wheelchair. It is just one week after his fixator was removed.

Altogether a great day for the most proud mommy in the world!

Parade Leader Nicholas and his teacher.

 

Family and Fixator First

Something has been on my mind from time to time since Nicholas had his fixator put on back in March. I have felt very often that people who have not had a child in a fixator have no clue what this has been like for Nicholas and for us as a family. Just like I have no clue what it is like to have a child with a life threatening disease or many many other things families have to go through that we have not. And while things have gone so very well and I feel all the hard times were well worth it, there were hard times. There were hard decisions to make and there were times I know we disappointed others in what we were willing and unwilling to do with Nicholas in the fixator. There was stress!!!

There were often times I declined invitations because I knew there would be activities involved that Nicholas could not do or things I did not want him to do. For example if I avoided amusement parks so Nicholas would not be sad about the fact that he could not go on rides. I would obviously rather disappoint someone else than make my son feel bad about having the fixator. I also found that we really really needed to be home in the evening and have plenty of time to do pin care and leg wash and exercises. It was hard sometimes to keep Charlotte and Christopher occupied in the beginning when it took 2 of us to do all of it. When Nicholas was over tired everything was so much harder. We had to have a tight routine. One of us would do baths, while the other did pin care or cleaned up after dinner. Evenings were the craziest time of day and I know we are not the only family that feels that way. But there was a lot to squeeze in. Having people over for dinner and such really was too much to deal with and not worth the stress sometimes. So we didn’t do it and we really didn’t mind most of the time. Oh and we had a huge kitchen renovation that stretched from before the fixator was put on till… well it’s still going on.

Also there are things that were too hard for me to do alone with the 3 kids. Christopher is still a toddler and requires constant supervision on the play ground and else where. Nicholas required constant supervision while on the playground in his fixator. There were times I did take them all by myself but it was not easy! Nothing that involved leaving the house with the 3 of them by myself was easy. So there were plenty of things I opted out of and maybe we did spend too much time at home but I figured it was better for them to be at home with a calm mommy than out with an anxiety ridden one. Luckily Steven worked from home most of the time so we could do the ‘divide and conquer’ thing and that worked pretty well.

When Steven was traveling there were some tricky moments. I had to really focus on being calm and ordering take out. I had to pay attention to the things that really had to be done and let others go. Letting go is important in my opinion. You have to let go of your idea of the perfect house and perfect anything and just do what matters and is necessary. Ok so my house is still a mess but I will get to it. The mess could wait, pin care could not. Building a Lego house with my kids last night could not, participating in a web chat and connecting with other parents could not, relaxing with my husband at night when finally all the kids were in bed could not. So I have a lot to catch up on. We have friends and family who we really did not get to see much that we would like to. We have places we want to go once the cast is off. Nicholas I am sure will be at the amusement park the first day it opens to ride the sloosh or whatever that water ride is called that he heard other kids talk about.

I hate when I read about people saying lengthening is bad because kids who have it loose their childhood. Not getting to ride the sloosh for one or two summers does not constitute a lost childhood. Even spending a lot of time at home was not a bad thing in his mind. He just remembers the the fun stuff he did. He does not even know about most of the things we didn’t do.

Essentially we have spent the last seven months in our own little world. Nicholas handled everything very well ( he really is such an amazing boy) and with no complications (except pin site infections which are expected). I don’t know how he would have felt if we were constantly running around and  taking him to places where he could not participate. Or if we had put ourselves in stressful situations for us, that would certainly have impacted him. Every decision we made over the last 7 months had to have the fixator in mind. Thinking ahead I am sure saved us trouble and stress. We put our family first and that is a lesson I will never forget. I will not say yes to anything to please someone else if it is not what is best for any one of my kids. These 5 (soon to be 6) people in these 4 walls are what matters most. Did we miss out on things? Sure we did. But when I imagine Nicholas, for the rest of his life doing what ever he wants on his own two feet, I am never sorry.

Big Blue Cast

Friday night: We are home and Nicholas is in a huge blue cast that goes above his knee. He is resting and playing computer games, which may be our solution to forcing him to take it easy! He is on pain meds for now and a little grumpy. One minute he is thrilled when he remembers that the fixator is off, the next he is mad because we wont let him walk.  The surgery was so quick (eight plate not needed at this time). Taking him back to the operating room was as hard as it always is. Dr. Standard had the great idea to tell him that he could pretend the mask they put on to make him sleepy was a pilot’s mask. So as he was laying on the operating table and he had that moment where he seemed uneasy I talked to him about his jet flying to Brooklyn to go trick or treating with his cousins and that made him happy.  Walking away with him lying on that table is so hard. I really was not worried about Dr. Standard’s part of the surgery at all. I knew his leg would be fine but I always worry about the anesthesia. Even though this was his 5th surgery I still worry the  same way.

It really is such a relief to have the frame off and yet I find myself on the edge of tears. I think it is the stress of the whole thing coming out. I also feel like I got hit by a truck. My whole body is exhausted.

Thinking about Nicholas spending a month in that giant cast is daunting. I really can’t lift him now and that will make it so much harder. Plus we have too many stairs in this house!

Today:  Nicholas is in school and insisted on going back on Monday. In fact he was mad on Saturday not to get to go to school even though we explained that no one was at school. He is doing really well in the cast, walking with the walker for the most part. Some scooting and sometimes he walks by himself when he does not realize he is doing it. We sent him to school with the wheelchair in case he needed it.  I don’t think he needs it but we shall see. His teacher has been amazing through all of this and I feel like she really looks out for him and really I am only upset to leave him at school the moment I have to walk away. Not sure why I am still sad to leave him there. I prefer Steven to take him to school to avoid the feeling all together.

This time tomorrow…

This time tomorrow we will be home from Baltimore and fixator free. I just went up to say goodnight to Nicholas and I said to his fixator “goodbye hunk of metal” and then he hugged his fixator and said “goodbye hunky, yes lets call it hunky.” At which point he decided to speak for his fixator and said “goodbye tomorrow I will go to another kid after all the blood is washed off me.” No fear of blood and such here. He is so excited. I am anxious but really what could I expect.

I have been worried because Nicholas’s foot has been bothering him more. Dr. Standard thinks it could be the knock knee that is creating the foot pain but he really is not sure. Hopefully things will be clear in surgery. Being in the cast might be a good break for his foot and we will actually really have to make Nicholas take it easy. This will be a challenge to say the least.

So my next post will be post fixator.

Finally An Official Fixator Removal Date…and other musings

Today Nicholas and Steven went down to Baltimore for one last x-ray to make sure Nicholas’s bone is ready for removal and it is!  Dr. Standard was not sure if his bone was %100 healed but it is healed enough for removal. He wont know till they are in surgery and at that point he will determine what kind of cast Nicholas will have. His options are a full leg cast or a below knee removable cast. If the cast is below then knee and the and the bone is not fully healed it could cause a fracture. Steven tells me that Dr. Standard was not totally happy with the x-rays taken today and that is why he is not sure exactly what he will be doing with my boy’s leg.

Another unknown is whether he will put and 8 plate in Nick’s knee. Apparently his deformity can cause knock knee (also known as valgus) on the effected side and we always knew this was the case for Nicholas. We have discussed the 8 plate with Dr. Standard on several occasions so it is no surprise. I had kinda forgot about it though. For anyone interested the technical name for the procedure is a hemi-epiphysiodesis (sorta makes fibular hemimelia look easy doesn’t it). It means is that they will restrain one side of the growth plate with an implant shaped like the number eight. The other side will continue to grow and correct the deformity. The eight plate may be removed when Nicholas has his knee surgery or as an outpatient procedure. I guess it depends on how long it needs to be there.

Meanwhile Nicholas has been counting down leg washes for about a week and a half. For some reason we thought it was easier to count leg washes rather than days. Counting tonight there are four. I was kinda sad not to get to go to his appointment with him today, since I had not missed any related to this lengthening. With his last lengthening I missed many because I was crazy pregnant with Charlotte and then Charlotte was born and I was nursing so either way I could not go in with him for the x-rays. We have had such good times Nick and I, chatting during the drive, eating in the cafeteria, drawing on that paper they put on the exam tables, stillness contests during x-rays, making friends in the waiting area and countless other little moments all our own. It really is only fair that Steven get to have some moments too but Nicholas had always insisted that I take him. It seems to be a lot easier to remember the fun times when the light at the end of the tunnel is so close!  But honestly I think we made the most of out trips and our time. The 2 hour drive never really bothered Nick and I loved being able to give him one on one attention which can be really hard to do with 3 kids at home.

I know I will spend the next few days totally nervous. Not so much because of the surgery but more because I am worried that Nick will get sick before the surgery. With H1N1 hitting our area it is scary. If he is sick at all he can’t have surgery and for good reason but I would hate for him to have to stay in his fixator longer and be sick!   I am sure I am not the only one worrying about this and I really would love to keep him out of school till next week but I can’t let my anxiety take over. Nicholas would be really mad at me if I told him he could not go to school.

So this is it. Just a few days and lengthening number 2 will be done. I can’t believe it.  Sometimes it feels like it was just yesterday that I was handed that piece of paper that said ‘fibula hemimelia’. And yet here we are 6 years later.  I have to write it again because it is how I feel, I wish I knew 6 year ago that Nicholas really would be ok and that his leg would work so well for him! I would be lying if I said I didn’t sometimes wish this had never happened to him and that I’d never heard of fibular hemimelia. No parent wants to watch their child suffer in any way. And yet, and I never ever thought I would say this (and totally mean it) but I am beginning to believe more and more that things are as they are meant to be. The easy, the hard, and everything in between. Just as I felt the morning he was born, that I could not wish away fh because that would somehow be wishing away my boy, I still feel that today.

Last week he fell hard on his fixator and landed on a half pin really hard (these are the thick pins that go half way though and hold the fixator in place). He screamed in pain and I asked him if he needed the yucky medicine (as opposed to the standard Tylenol) but he said no. In just a few minutes he was ok so I figured he had not injured himself. That night there was a little blood around the 1/2 pin. Which is not uncommon for that particular pin anyway but during pin care Nicholas said “Mom you should take a picture of that pin site and share it with the moms on the web chats so they can tell their kids not to do what I did so they don’t get hurt”.

Today I saw the quote below and it really made me think. I could not have planned this life of mine if I had tried nor could I have planned Nicholas’s. No one plans birth defects for their child but these things happen. All I can say is that I have tried to do the best with the life that I have and more importantly I have tried to make the best life I could for Nicholas, give him the strongest possible foundation and all the love he could stand. Today I wouldn’t change a thing.

“We must be willing to let go of the life we’ve planned to have the life that is waiting for us.” E.M. Forester

Live Web Chat with Dr. Standard of the RIAO updated

I have participated in many chats and have found them to be so informative. Dr. Standard has answered many questions and the moms in the background have shared so much from advice to experiences and even laughs! So spread the word. Who knows who you might help : )

Please email Lee for more info: vbrady@lifebridgehealth.org

The next online LIMB LENGTHENING chat will be next week on Thursday October 22.

Date : Thursday October 22
Time: 9:15 PM EDT (Note that this is the time zone for Baltimore, MD or Washington, DC)
Place: http://www.chatzy.com/600868137410
Temporary password: lldtest
Day of chat password must be requested by email
If you participated in the August or September chats, we are using that password so you don’t need to request it, but please email Lee so that she can have a good head count.

Now, some exciting news – the following week on Thursday October 29, we will be doing the first ever ACHONDROPLASIA chat (and other types of skeletal dysplasias such as pesuedo achondroplasia, hypchondroplasia etc as well). The time and location for that are the same as the LLD chat. If you know of any families with this type of diagnosis, please let them know about this chat. This is not a lengthening chat. Dr. Standard will answer the questions presented as he does with the other chats. The chat will likely explore the treatments that children may need to treat the various aspects of achondroplasia. Having families on the chat who have been there is very helpful for those who are new to this diagnosis. There are things only a parent can know and understand : )

Counting down days still fixator removal!

Nicholas was a little down tonight about having to do leg wash and pin care. He thinks everyone else is off having a good time while he is stuck in the tub. So tonight I began the countdown. I told him that he has 13 days left in his fixator and that certainly changed his mood! On October 24th it will be 7 months ago that he had his surgery. I can so clearly remember the smell the sinai chili and Starbucks coffee. I can also picture him just after surgery, groggy but not in pain. I remember the face of the nurse who was talking care of him and even saw her in the cafeteria the last time we ate there. She remembered Nicholas and seemed so pleased to see how well he was doing. Those nurses must see a lot of patients in 6 months time but she remembered Nicholas. I remember a lot of nurses.

So now we wait and we countdown till we celebrate. We planned on having a fixator removal party but now I am thinking we will wait till the cast is off and have a “Great Growing Nicholas party.” He has worked so hard and come so far. I confess the party has started in my heart already. Everyday I feel joy thinking of how well he has done, through all of this and I feel grateful that I get to be his mom and he gets to live his life standing on his own two feet. Every hard moment (there were plenty), frustrated mommy moment (and there were plenty), every physical therapy session, every leg wash and pin care and every single trip to Baltimore is reason to celebrate because without all of it he would not have his leg.

I get by with a little help from my friends and my half-pin?

Nicholas informed me yesterday that he was using one of his half-pins to balance his chair on when he has to pick it up and put it on his desk up side down. The very same pin has been bleeding a little and bothering him since he started school and I thought it was because of his increased activity! Still could be, it certainly has not been hurting him. Tonight at open house, I spoke to his teacher about it and I am sure she will be watching and likely insist on helping him now.
Nicholas is so determined. Determined is the word she used, and it made me think about it too. Nicholas is determined but I also want him to ask for help comfortably, when he needs it. It is a lesson we all need to learn.