So actually we went to spina bifida clinic at UCSF yesterday. Evan's renal ultrasound showed beautiful, "normal" kidneys and his head ultrasound showed small ventricles. Both of those bits of news are excellent for kiddos with spina bifida. They made his visits with urology and neurosurgery basically uneventful--which, in Evan's world--is good. We also passed the visits with the social worker and dietitian without much ado. After a 2 hour drive and 3 hours of doctor visits, Evan was understandably fatigued. Nearing 5:00, in walks the physical therapist. (Cue boo's) I was initially pretty excited to meet with her and the orthopedist. I planned on telling them Evan's pt's recommendation for starting bracing so he can have more support in his ankles for standing. It was supposed to be exciting. Then the clinic's pt starts looking at his feet and saying they won't work in braces. They turn in too much (Remember Evan was born with clubbed feet and we've never done anything about it?). His feet need to be casted. I argued that they can go into "normal" positioning so he doesn't need to be casted. We discussed it back and forth. She left to find the physiatrist and came back saying, "They can do it right now. Are you ready?" I was still unsure and in denial and had a million questions running through my mind--
Can he go home in a normal car seat?
Do we have to come back every week and get them re-casted?
Can I call my husband?
Are you sure he needs casting?
Can I get a second opinion?
I decided I could at least talk to the orthopedic team and see what they have to say. I took Evan into their room and they had me lay him on a table. They started stretching his legs and opening the gauze packages. I tried to stall them but it all happened so quickly after that.
Yes, he needs casting, but these are soft casts.
You can take them off in 5 days.
It's just a jump-start on re-positioning his feet and to hopefully avoid hard serial casting.
Let us know if you have any questions.
Blah blah blah...all the while Evan is SCREAMING on the table under my restraint and I'm thinking, "What just happened?"
The only comfort through the whole ordeal was afterward when they told me, "He's going to be a walker. That's why we're so aggressive with straightening his feet right away. He's going to be a walker"
Anyway, the poor boy knocked out for the car ride home and didn't really discover his casts until the next morning. He can bend one knee which helps with crawling; he just drags the other leg behind. He gets frustrated that he can't get up on his knees on the couch or the table because his knees won't bend. I think he also gets more easily tired while crawling. But he's really been a trooper and I keep telling myself, "It's only 5 days." We've been practicing standing a lot. He tolerates it for a minute or so and then gets a little cranky.
We spoil him with treats and lounge chairs and lots of snuggles. He also likes to go into his little cardboard house with his blankie and pillow and puppy and lots of books. I'm sure hoping that 5 days does the trick and we'll have some better standing in no time!