Foot Prints On My Mind


A few weeks ago Nicholas had a gait analysis at A.I. duPont. It was actually a pretty fun Friday for him and his siblings. I can’t share pics because Nick in short shorts is not meant for the internet but the whole thing was so interesting. I suggested they rent the place out for parties. The gentleman who did the study let the sibs try out some fun stuff. I never think going anywhere in a hospital with four children will be easy but it was easy and funny and pretty painless for Nick except he lost some hair getting sticky things taken off after. All the circles on the figure above represent a sticky thing. It all comes back to bandages and tape. #whatFHmomsknow

The image above was given to us on our way out. The complete results of the study take weeks. I so love science and data and as impressed as I was with the whole thing I was not so happy to see this image.

Nick is still bearing weight primarily in the same place he did before he had 3 screws put in his foot.

This study was done after we went to Gig Harbor to get Nicholas fitted for the ExoSym. I am glad we had done so already because I feel this points to the fact that we need non surgical solutions now. The surgical ones just are not cutting it, despite a lot of cutting! Ha! Nick found that quite funny.

I am trying to take the insurance bit of the ExoSym process in stride. Cigna has not completed a preauthorization yet and may not ever. We just have to go and see what happens. This is potentially super nerve wracking as this brace will cost over $10,000. It’s really not just a brace though. It’s Nick having a prosthetic and keeping his foot. It also has a knee component that will be vital. I am understanding this issues Nick’s knee has more and more as Nick works with Reenee his physical therapist extraordinaire.

Yet again I find myself in a situation in which I have had to commit not to let money decide my sons fate. I really wont. It’s not fair to him. On Halloween my boy will get his ExoSym and he will create a whole new set of foot prints and follow the trail blazed by Zak Green and hopefully many kids with fibular hemimelia to come.

Rx: Rice and Beans

Nicholas’ physical therapy appointment was at 8 am so we had an early start today. It is a forty five minute drive giving us plenty of time to chat.  We passed the time by  picking a name for our future cooking show and started working on the theme song (cant share either because we do not want our fabulous ideas stolen).

Nicholas did his usual pretend souffle making in the play house in the waiting room. Today’s souffle was chocolate mineral.  I am not sure where he comes up with this stuff but this is what he plays each time in the waiting room.

Stretching went as usual and we showed Ms. Kathy how great Nicholas’ leg looks with less wires and such.  She agreed with me that is looks so much less swollen and that the bottom of his foot is as smooth as a baby’s bottom.  Over all Nicholas certainly did well.  He walked on a balance beam with his walker, somehow without putting weight on his right foot.  He attempted stairs and at least let his foot rub the carpet on the stair. Otherwise he hoped.  He is a champion hopper these days.

Nicholas was not his usual, I’ll try anything that self.  He did have some fun and I learned some interesting ways to help Nicholas’ foot feel less sensitive.  Such as putting his feet in a bowl of rice or beans and having him use his feet to search for a small object hidden in the bowl.  Ms. Kathy also said to let his foot feel all different textures. Such as sand, a feather duster or pebbles.  Tonight I traced letters on his foot with a q-tip and he had to guess what they were. He did great.  And we rubbed cotton on his foot.  He also had his foot resting on a towel for a bit but didn’t really like how that felt.  I had already washed his leg for the night so I did not want to put anything on his foot that was not clean.

Ms. Kathy has such a great rapport with Nicholas and he did the most weight bearing he has done so far with her.  We’ll go back next week and see how he does.  I just want him to be able to enjoy the rest of the summer.  Maybe we will have to be more creative in terms of things to do that don’t require walking.  For now it’s rice and beans!  I am sure Charlotte and Christopher are going to want to get in on it, so I think we’ll have to take this game outside.  Maybe it wont be so hard to think of fun things after all.