“I’m okay. It’s just an external fixator for leg lengthening.”

still climbingToday 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.

4 thoughts on ““I’m okay. It’s just an external fixator for leg lengthening.””

  1. I was wondering if you could send me your e-mail address. My son is 5 months old and we are going for x-rays tomorrow to get more information but based on my research I think that he may have FH, although no one else has used that term. He was born with 4 toes (two that are fused together so I’m not sure if it’s a 3 or a 4 ray foot), a much smaller/more narrow foot and a shorter leg. His leg difference is not too severe but is noticable to the naked eye if you look. As I said, tomorrow we should get a ton of information that we’ve been wanting for. I noticed in one of your posts that you said that your sons expected disparity is 20cm. How much of a difference did he have at 6 month or so? I’m just trying to figure out how the difference progresses? Thanks so much.

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  2. Hi Bonnie, I am no expert but I think you are right that it may be fh. It is hard to say what Nicholas’ difference was at 6 months because his tibia was really bowed. I would say that it was significant, kinda couldn’t miss it actually. A 20cm difference really seems to be uncommon. Nicholas’ case is sever. Feel free to email me jencurley22@mac.com. The kids with lld yahoo group is a group of parents of children with all different diagnosis so that would be a good place to get info too. But I am happy to answer any questions you have.

    Hope your appointment goes well tomorrow. X-rays can me frustrating!

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  3. Hi

    Thanks for such an informative account

    My daughter was born on 7/8/2010. After having two boys we were thrilled at the birth of our little girl! We had no idea it was going to be a girl and we had no idea she would be born with missing bones. It was a shock and we didn’t know how to react. Should we be jumping for joy because its a girl or mourning over the fact that there was something wrong with our daughter, especially since the initial pead told us that her whole right side seemed to be deformed and that they will be doing a whole body x-ray.

    I guess this must bring back memories for many of you. Well 7 months on here we are with a wriggly bunny! After all the initial tests they found that she has a missing fibular in her right leg, a 3 toed foot and a bowed tibia. The last 2 toes on her left foot are growing off one root and she has 2 fingers missing on the right hand. with her 3rd finger growing inwards. She also has a small hole in her heart. However thankfully we have been told that her hand is mostly functional – she grabs and grips like mad and that her heart will naturally heal as she grows older.

    The main challenge will be her type 2 FH, initially i remember thinking whether she would be able to sit, crawl and eventually walk. She is already sitting and after reading some of your accounts, I am hopeful that she will walk!

    Our current hurdle is to decide which route to take for her FH. Our consultant at RNOH, Great Portland St, London, UK has said he recommends amputation but he can offer us corrective surgery. We have realised that there is also a third option which is to leave her leg as it is.

    We have pretty much decided to avoid the amputation. We recently visited the amputee rehab center in Stanmore, London, UK and met a consultant there. He was great in explaining her condition further and told us our daughter’s foot was of no use. Even though he was very convincing our visit made us realise that amputation isn’t a one off procedure but just as long winded as any other treatment.

    Now for us its looking into the different methods of corrective surgery and making our consultant believe in us…belief is an ingredient to success.

    From what we understand, it seems that her treatment will be firstly to correct her foot, then straigthen her tibia and then to lengthen it – we’ve been told that she will have a 20cm shortage at full growth. We have found lots of info about straighthening and lengthening but does anyone have any experience or information of foot correction surgery on a 3 ray foot or similar. I would love to hear from you.

    Tee

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  4. Congratulations on the birth of your little girl. I had my 4th, a little girl on June 17th 2010. I remember that feeling of being worried about the birth defect but also so happy to have my baby. No parent who has not gone through something like this can understand. I feel such a kinship with you and all the parents. I am hoping when Nicholas is old enough he will get to experience that with the kids who are born with limb differences like him.

    Nicholas has a 3 ray foot. I realize every foot is different but I have not heard of many fh cases where a foot was not functional. If you come on the next limb differences web chat you could ask the Sinai doc’s if they know of any doc’s in the UK that have more lengthening and reconstruction experience. Dr. Standard also specializes in condition involving the hand/arm that I cant recall the name of at the moment. I also know there are other parents on the yahoo group who have children with both hand and leg differences.

    I wish you all the best in seeking information and remember you do have time. Enjoy your little girl!!!!

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