Rolling Along

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There he goes. Literally rolling along. While Nick is self propelling I am pulling around the large case that contains his remote for lengthening. Calling it a remote makes it sound small. It is not.

Today we started lengthening. Although Nick did get a few mm’s during surgery this is the official start from our end. Nurse Lee delivered the device (which ended up being the old version and not the new… long story) and helped with the first go. I have a really cute photos of the moment but since Nick is in his boxers I wont be sharing it here. Nurse Lee is really one of unsung hero’s of the last decade of our lives. Seriously. I have written about her before but not enough. She has been there for all of Nick’s lengthening’s. In general she teaches parents how to care for their kids in an external fixator and lengthen their limbs. Now also teaches parents how to use a big magnet to lengthen limbs. It’s no small thing to train us to take our kids home and do these things to them. Plus she runs the web chats which have helped families in immeasurable ways.

Nurse Lee is a person I have counted on probably more than should and certainly beyond her job description. I respect and admire her so much! Now back to Nick…. sort of…

Today was doctor appreciation day but we did not actually see the doctor. We saw Chris the PA. With Nick’s third lengthening and monster fixator I was not ok with him not seeing Dr. Standard and frankly neither was he (triple negative… shut up grammar police). It seems we have both grown a lot since then. Today’s appointment with Chris went great. He answered all of our questions and concerns. Right away I asked him about the swelling in Nick’s knee which he said was ok. Nick’s other incisions all looked good. We laughed a little and really had a standard appointment… even without Standard 😉

Our clinic visits will be a crazy lot shorter if we see Chris or Allison. As long as Nick does not ask for Dr. Standard I have decided that I will not. I trust Chris and Allison with Nick’s care. We love seeing Dr. Standard but if things are going smoothly we don’t need to see him. I have talked to another family that does their appointments this way. Nicholas used to ask for Dr. Standard as soon as we walked off the elevator at the RIAO. Times are changing.

So all in all it was a good day in Baltimore. The valet service was a godsend, as it has been in the past. The gentleman who helped us today has been there as long as we have been using the service, which was a comfort. Little details can really make the day easier. Nicks physical therapy evaluation went well. His eight plate is going to make the knee bending harder but it’s really ok. Extending is the focus now and we will keep working on the bending. Since pin care was usually my job and pt was Stevens I might take on some PT. Femoral lengthening requires more work so I think it makes sense to take some on, if Nick will let me. He’s pretty particular about who does what. He jokes that I am out of job without pin sites. Imagine that.

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5 thoughts on “Rolling Along”

  1. Oh, this is good news! There’s so much that is possible. and hurrah for that! Good work Curleys! Good work Nick! Nick, talk to me… where’s the vid explaining all this? love, a

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  2. The PRECICE in its case is very heavy. My techie son commented that the case is Indistructable . Dr. Nelson tells us to bring it for each visit with him but we leave it in the car.

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    1. I just did pt with Nick for the first time in a while. He still has a lot of swelling so his knee is progressing slowly. As long as he is progressing in general we will try to do it on our own but I wont hesitate to call duPont. They did well with Nick in the fall. I am hoping we can continue on our own but I know the pros are often necessary and femur lengthening is harder than tibia though PRECICE is easier than fixator… either way we have to be really careful! I think I did ok but we do have some kinks to work out.

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