First of all, we noticed on Monday, not even two weeks post-surgery, that her new brace (she had been wearing it about a week) was breaking again at the same place the other two broke. I emailed her neurosurgeon to let them know and then also scheduled an appointment with orthotics for Friday. Emmie already had a post-op appointment with the neurosurgeon. Why not add another?
Meanwhile, I heard back from Dr. C, the neurosurgeon, and they wanted her to have an x-ray on Friday before her appointment. We were told by his staff this was to see if her spine was stable enough to go without the brace. However, that wasn't entirely true. I'll get to that.
Zoe had an awards night with American Heritage Girls on Thursday night so we opted for an early leave time on Friday. We left our house at 6. In the morning. Dropped the kids off at Ge and Granddaddy's by 9 and headed to Emmie's appointments.
First up was x-ray. We have yet to figure out how to explain to a baby that she isn't get an owie when the x-rays are at the same place as the MRIs. One day we'll just be able to tell her and she'll believe us.
After that was done, we headed to Dr. C's office. Dr. C was very happy with how she was doing post-op. He showed us the x-rays from March and then from today and we could see a bit of improvement. Obviously, the spine was not the shape we wanted it to be and I don't believe Dr. C was expecting it to be. He is using the x-ray from today as a baseline. She'll have another done in three to six months (We'll try and coordinate it with her MRI schedule). At that time, we have three options:
1. Spine has shown significant improvement in bend-This would mean Emmie won a trial period without the brace.
2. Spine has shown no improvement or worsening-This would mean that the brace is working and she'll need to continue wearing it.
3. Spinal bend has worsened-We're not sure in detail what this would mean and honestly I don't really want to know but he repeatedly said "invasive action."
I would much prefer number 1 or even number 2 to number 3.
He looked at her broken brace and shrugged perplexed. He said he has never had a child break that kind of brace. Ever. One of Emmie's super powers have been revealed.
We also discussed her eye. Her right eye is still a bit droopy and she doesn't open it too wide. We thought, at first, that it could just be swelling but after two weeks it has not gone down and should have shown some improvement. Before her appointment, I scheduled an appointment for her to see her ophthalmologist to rule out nerve damage. Dr. C agreed with that and expressed willingness to cooperate with her eye doctor should they need information from him.
With that, we hopefully, said good bye to Dr. C for a good long while. Dr. W will be our go to neuro guy (he is the neurologist if I haven't lost you with all these doctors yet).
A quick bite to lunch, a power nap, and off to the bat cave to modify her brace.
I had my qualms. I just knew that the orthotics would shake their heads and either give us another one just like what she had. Instead, she was just like M in James Bond. She looked at, discussed, deduced what the problem could be. After spending awhile with us, she headed to her secret lab to work on the problem.
|Eye pokes help pass the time.|
Genius takes time people.
Finally M returned (okay her real initial is L but we're going with a super hero/James Bond theme here, bear with me) and brought us the new and improved brace.
If she breaks this thing, I may lose it.
M (or L) thought the main issue was that the kyphosis is causing the weight of her head to push forward which is putting more stress on the front of the brace. Basically, it's not that these braces are poorly made but that they are not designed to help kyphosis. But M made it happen, ya'll.
I wish we had more concrete answers. A more definitive timeline of the future. But Emmie. Well, those who know her personally, this will come as no surprise. Emmie is a special case. Not many one year olds have cervical kyphosis and NF. We're all walking new territory so no one can really tell us what is going to work and isn't and for how long or not.
Once again, we have no other choice but to trust God and wait for Him to reveal what our next Super Ems adventure will be.