Vivi had to be woken from a sweet slumber in order to get to Boston Children’s on time.
By the time we got in the car, she barely had her eyes open.
Thankfully, she had an hour and half ride in which to wake up.
As expected, Jude’s and Shepherd’s feet are fully corrected and doing wonderfully. No changes to their routine of boots and bars at bedtime. Good news!
Her feet have been well corrected, so no additional casting will be necessary. Only boots and bar at nap and bedtime… yay!
But the muscles in the top of her foot don’t function properly. She is not able to lift her toes either purposefully, or reflexively. Hence her gait, which resembles someone wearing flippers.
Someone very cute, that is. Wearing adorable flippers, of course.
Next, we moved on to other pressing Vivi issues: her arms, the possibility of dwarfism, how cute she is.
And yes, we actually did discuss how cute she is.
Next we were sent for xrays, to hopefully give us some answers to those questions unrelated to her cuteness. Vivi tolerated it all amazingly well, especially considering she had to hold her arms in uncomfortable positions for extended periods of time.
She did way better than I would have done. Notgonnalie.
I was a bit anxious to hear the results of the xrays. After all, we’ve been waiting a long time to know what is going on under all that baby cuteness of hers. We’d requested xrays shortly after we accepted her referral last January. Not surprisingly, we never received any.
At last, yesterday brought some answers.
I think that’s the same condition I have.
Oh wait, mine is called laziness.
But does she have another form of dwarfism?
We don’t know. And we won’t know for a while. Vivi was referred out to an endocrinologist/geneticist and upper extremity specialist for further testing in the next few months.
The last piece of news we got is that her arm deformity is very uncommon. And progressive. Her condition will continue to worsen, eventually requiring surgical intervention. The upside is that the surgery will be for functionality and not pain relief.
I was so grateful to hear that her arm deformity won’t eventually cause her pain.