Yesterday we got to meet Alex Barone in clinic! Alex has an awesome show called A Little Different. Alex and Nicholas are more than a little the same because Alex has fibular hemimelia! Alex has had many similar surgeries to Nick including ankle fusion. You have to check it out the link above to A Little Different if you have not already. He showcases some amazing guests and is himself an actor, producer, writer…hmmm maybe he would be willing to write something to he shared here?
It is beyond cool when someone from the internet world of fibular hemimelia becomes a person in the flesh! Although I really do feel like I know our fh family so well even though many of us have never met, it is still super fun to get to hug someone you think is spectacular! This video of Alex’s family is one of my favorites and makes me cry every time I watch it. Recently a parent in the FH support group asked what sports would be good for kids with fibular hemimelia. I said all of them but especially the one your child is interested in! This video is a good example of that. I love that our kids have role models of people embracing who they are like Alex does. That is what I want for Nicholas more than anything. I know his leg will be ok. I want his heart to be ok too. So far. So good!
Nick’s favorite video from A Little Different is episode 6 Big Nick.
As far as my Nick’s follow up went things are looking great. Check out before and after:
Basically as Dr. Standard said yesterday he took Nick’s foot apart and put it back together. Nick thanked him for putting it back together. I am trying to remember everything that we discussed but it’s hard. We were all social and happy. We laughed way more than I would have expected and Nick finally got some signatures on his cast!
Nick’s knee is doing well too. He can now bend a little bit and he is happy to do so. The little bend might help the foot pain he is having which seems to be nerve pain. We also got meds to try for the nerve pain so hopefully the bending knee and meds do the trick!
Nick’s knee needs physical therapy now. Steven will need to take him for a few sessions to get a plan from the RIAO team and then he can get to it at home. He seems to think that all across these surgeries the exercises he has been doing have been more than a little the same so he feels confident he can handle this one too.
This surgery feels a little the same for me too. Taking care of Nick in the first few weeks is a round the clock job. I feel a little like a zombie at times. I feel a lot grateful almost all the time because things are going well! It’s spring break here. The kids are all in Nick’s tiny room hanging out. Charlotte made a fruit salad for them. She had a much deserved moment in the spot light this week in the newspaper! Bess and I made it in too.
We have not been able to taper down Nick’s other pain meds as much as we wanted but Dr. Standard said this is totally normal considering all the work they did. Unfortunately this means Nick will not likely be able to go back to school when we had planned. Being medicated is not conductive to learning. We’ve tired doing some work at home and he’s having a really hard time. This is stuff we can work out. I had a plan in mind that is just not working. Time to adapt. Only the adaptable survive! That’s a little something being an FH mom has taught me.