Syringohydromyelia

Bless you! And a gold star to anyone who can pronounce that fabulous word! Actually, it is the newest addition to Emily's diagnoses. The spinal MRI results are in and there is fluid in her spinal cord, from the T6 level on down (that is the thoracic level). The genetic counselor called with the information and briefly said it is not anything alarming (though it is obviously not her department, she did not even know how to say the term correctly). We have an appointment with a neurosurgeon in February who will guide us on the next step. From the little research I have done it is a cystic cavity or syrinx that is enlarged and filled with fluid (that can be removed thru surgery if necessary). If I understand correctly it is a closed space that can be causing discomfort, but is not a major threat (there are some conditions where it is open and higher up in the spine/involving the brain, that are more concerning). Symptoms include weakness and/or pain in the arms, hands, legs, etc., though we are not seeing much of that, other than the fact that she gets tired of walking easily. I think it is pretty rare in children, and the cause is unknown (it can be congenital or from some kind of trauma). Now please don't quote me on all this, we will have clearer information from the doctor in a few weeks. We are certainly discouraged, though pleased that we have an appointment in just a few weeks (rather than a few months that some appointments can take). A friend recently asked how I deal with the stress, and I replied that I try to remember the little things to be thankful for. The report on the liver was good news, the medicines she is on are working, she is fully potty trained (no diapers at night either), etc. And of course there are the big things, like being in our own space again, the ongoing unemployment benefits, and happy children who are enjoying life. Another friend just sent me her cd, and the first song is about how Jesus is there, no matter where we are, He is in it with us.