update

[Guest guest]

We saw the neurosurgeon last week regarding 's syrinx. I went in expecting

to hear that it was small and we would just watch it. The MRI report noted it as

" small " , so I felt I had every reason to be optimistic. I left that appointment

feeling a little bit ran over by a bus.

The MRI report said no evidence of cord tether or chiari. The neurosurgeon

disagrees regarding the tether, saying it is borderline and with 's

significant scoli and syrinx, he said a " borderline " tether should not be

ignored. He ordered a brain MRI to look for any underlying issues that could be

causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet

to research that one)We have that MRI this Thursday. The neuro is out of town

next week, so our follow up appt. to see him is 10/27. We will set a surgery

date for the tethered cord then and make a determination on the syrinx based on

the information from the brain MRI.

It took me a few days to adjust to the idea that casting has yet another delay

now that these issues have been brought to light. It's so difficult for me that

it seems like it's taking forever to start treating his scoli. I'm an impatient

person by nature, so to feel helpless in getting him what he needs right this

minute is just plain difficult for me.

I'm feeling a little better this week...well, still concerned but functioning

better. I'm very eager to know the results of the brain MRI....

Some good news to report is 's reflux is showing major signs of

improvement and he is finally gaining some weight! Yay! In addition to that, I'm

seeing little notes of fine motor development, which I love.

Mama to

10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

schedule and syrinx plan post MRI - (prior to casting.)