I've been active this year on a Facebook group of about 70 other parents of lipomyelomeningocele children. They abbreviate the condition LMM. Through this group I have learned that there are families all over the world dealing with the unknowns of this condition; that there are a lot of toddlers needing significant help/intervention to learn how to walk (Maia has had zero problems with this); and that the traumatic experience of her diagnosis and her two surgeries (one untethering, one to clean out a bad infection) are not uncommon and many other parents have almost identical experiences. It's been really great to connect with other parents and hear their stories.
We just had our annual checkup with her neurosurgeon. She looks great! She is doing incredibly well. Hopefully now that she is talking more and more, she will be able to communicate symptoms that she is experiencing and alert us to a need for another surgery before there are any irreversible problems (like loss of bladder control). Some kids need additional surgeries to prevent further problems, some don't, and her doctor said there is really no way to predict which is which. Living with that unknown has made me realize that none of us really know when something will happen that will irreversibly change us, and the practical realities of living by faith day to day. Maia might have health problems from her condition, she might not. As I watch parents with their kids at CHOC when we are at these appointments, I realize that any of us may be in their shoes someday - I'm just more aware of that vulnerability because my daughter has a diagnosed condition.
She got the green light to work on potty training (just bought what is hopefully my last box of diapers!), jumping on the trampoline, running, jumping, and being a normal kid. She was talking about Papa's boat during her appointment and it turns out her neurosurgeon is a fan of sailing so she especially got the green light to enjoy the ocean. :) With a life jacket of course.