Did I? I must have. It’s a thing I don’t always realize because I am such a cheerleader. I think you all need a cheerleader but I don’t want to be that at the expense of sharing the realities.
This is not the only blog on limb lengthening so there are other places to get realities. When I wrote about limb lengthening while it was happening to Nicholas, I was totally realistic and accurate. The thing is, as time passes memories soften around the edges and sometimes they just soften or leave altogether.
When people ask me questions about Nick’s experience in some specific way I often have to search this blog to find the answer. Sometimes I want to suggest others do that instead of asking me things that are here but that’s me being grumpy, or busy, or both.
Anyway despite the fact that it was all hard, it was all do-able (which I always say). Although I feel like I neglect to add that for Nicholas’s first surgery Steven and I were both home. I did also give birth to Charlotte in the middle of that but we were two stay at home parents. For several other surgeries Steven worked from home. It was all a heck of a lot harder when Steven traveled and I was home with all the kids on my own and when Steven worked a regular job that he had to show up at. His working from home made so many things so much easier.
I must also note that just about everyone else seemed to have hard periods to, for a multitude of reasons. I didn’t think everyone else was having an easy time parenting because they didn’t have a fixator on their kids leg. In fact in some ways I think I had an easier time than some because I had real shit to deal with so I did not need to make up problems or stress the small stuff. That might sound awfully judgmental but I can see it in myself, that when I don’t have big shit happening I can obsess about some seriously little shit.
It’s not easy though. There is nothing really actually easy about leg lengthening. Of course I have been quoted as saying “It’s the easy part” but that is in comparison to joint reconstruction.
Lengthening still seems like a miraculous sort of thing to me. Cut a bone, separate it a little each day and it fills in. Super ankle feels less miraculous. Maybe because Nick’s foot has not been an easy fix. Maybe because it is still causing him pain. Nick’s knee is causing him pain too, again. He couldn’t get through more than a 1/2 hour of swimming on Monday night because of it. Swimming was the thing he could do without pain and this knee pain has been reoccurring for a while.
This stuff is difficult. I might have neglected to remind you but I have also neglected to remind me. I feel a little pissed off at times when it’s hard for Nick and I can’t fix it or I don’t want the fix that Dr. Standard can fix it with… surgery. It’s just the mood I am in but I have faith that time will pass, problems will be solved and the memories will soften until I forget and have to come here to remember.
As I posted previously, on Monday Nicholas began doing 4 lengthenings per day. First of all Nick really is doing it all on his own. I just pass him the remote which he calls the .25 2.0. The new remote is so easy for me to lift one handed (which I have another week of doing as my arm recovers from surgery). It actually seems faster than the old remote but I am not sure if that is true.
Also Nick has not had pain meds in days. I thought he would have more pain doing more lengthening but so far so good. It’s not that he’s been totally pain free but it’s been manageable. PT is hard! His knee does not want to bend much but I think we are making progress and I know we are not sliding back so it’s ok, whatever it is.
Stairs are really not working for him right now. He walks great with the crutches but stairs are rough which means we are pretty much home bound when Steven is not home. Thats getting harder to handle. I really want to try to get him out more!
So while lengthening is going great losing Monk has been hard. I have this terrible ache in my chest that I did not expect. Not at all. I know so many people have lost pets and know what its like. More and more I feel like we really were one big pack and he was an integral part. Such a peaceful presence and he was our little watch dog. Seriously, though he was small he was always watching. His absence is just painful. There is no way around it.
Here’s what Nick was trying to show you in the video:
And for our Spanish speaking FH family:
This was requested by a mom from the Fibular Hemimelia and Limb Lengthening Awareness Group. The FH warrior label did not appeal to me at first but I was totally happy to make it for her and the other families. In fact it made me feel really happy to do it. I love our group so much but word wise “warrior” wasn’t my thing. I am more about being at peace with, living with, working with fibular hemimelia but when I showed it to Nick he liked it a lot. He said “Warriors brave the storm of pain and sadness that comes with fibular hemimelia and then find their is a Silver Lining.” (Thomas the Tank Engine reference) I asked what the silver lining is and he said “That you have equal length legs and scars to prove that you braved the storm of fibular hemimelia. Like a warrior returning from war.”
So there you have it. I am off to do a web chat. Nick is doing homework and we’ll post again soon.
Smaller Precice means access to internal lengthening for more kids with fibular hemimelia as well as other limb differences. Nick will have internal lengthening if the tibia and femur in a few years. He’s in a real lul surgery wise right now and we are so grateful.
Nicks doing great, in case you were wondering. He finished his extracurricular basketball season,
started swim lessons at the YMCA again and looking forward to swimming with the Arden Sharks this again this summer. He’s still waiting or his new brace, as part of the trial, to be ready. He snapped the first one but we are still so exited to be helping create something to help kids with FH grow into adults with great functioning limbs!
One important afterthought: the Precice won’t eliminate external fixators. For one thing it can only do straight lengthening so so it can’t be used on a bowed tibia. And some doctors prefer external fixators for the super ankle surgery itself. The important thing is new methods and options are becoming available! Who knows what the future will bring. 10 years ago this was a dream and now it’s reality.
A Family’s Journey with Fibular Hemimelia
This video features and absolutely adorable little girl and her family and Dr. Standard!
Nick’s leg is healed. His arm is healed too. In the words of Dr.Standards PA Allison, Nicholas is “super healed”.
No more braces or boots!
His right foot even grew too big for his summer shoes. I can’t remember his right foot ever outgrowing a shoe before his left. It’s pretty amazing.
It was a happy RIAO visit… my boy didn’t want to leave. He was enjoying the cable tv and he made another friend with a broken arm. I guess it’s not such a coincidence at an orthopedic clinic but it’s funny to me. Nick was a little sad not to get to see Dr.S (he was in surgery) but he said “I really like Allison. I mean I like her like a friend”. I think he thought I thought he meant romantically. LOL
I have waited for this day since January when the mega fixator was put on. I have dreamed of hearing that the bone was finally healed and it’s here. Nicholas is so happy. He was running down the hall at the the RIAO.
Without the boot on his gait is off but it still feels funny to him to walk barefoot. We’ll give him time to adjust and get physical therapy down the road if needed.
I am listening to the kids playing and need to put them to bed but at the moment, in addition to feeling elated I am exhausted! The emotions of the day, the drive, it all wears me out. What a great reason to be super tired.
If I had the energy I would write a love note to the RIAO! I am already thinking of doing something special for the all the folks who saw Nick through this. It takes a village (and one wizard of a doctor of course). I can’t name you all but so many people helped us get through this (almost a full year of ups and downs).
Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!
Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.
Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!
When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.
Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!