Wednesday, February 24, 2010

News on Baby's MRI of Spine

Anticipation always has an element of fear, and hope. We heard back from Seattle Children's concerning little Tito's recent MRI of the spine. Everything looks great--no tumors! The nurse practitioner from neurosurgery did say there is a tumor on the left orbit of the baby's eye, and had us coming back to Seattle this week to meet with the Tumor Board. We told her that we've been through all this before concerning a possible tumor, and that we were finally reassured of no tumors by the craniofacial surgeon. So where things stand right now is that if any tumors are present, they will be removed in surgery.

In the meantime, our soon-to-be 11 month old son enjoys his army crawls, and even more so his Ritz crackers.


Nf1andprek-whisper said...

does tito haveNF1?

Lace Marie Williams-Tinajero, Ph.D. said...

Thanks for your comment. Our baby has been diagnosed with NF1. We have learned that in order for a clinical diagnosis to be made of NF1, there need to be at least two of the following manifestations: cafe-au-lait spots, tumors, freckling of the iris of the eyes or on certain parts of the body where there are folds in the skin, bone thinning or a missing portion of the sphenoid bone in the skull, etc. Our son began forming cafe-au-lait spots at 7 weeks old, followed by freckling in the right iris of his eye, and now has been diagnosed with left-wing sphenoid dysplasia. Based on these features, a clinical diagnosis of NF1 has been made. There are no cases of NF1 on either side of our families. The diagnosis did not come overnight. It took awhile despite suspicion early on that he might have it.

Mary Rose , Indiana said...

I just stumbled across your website and I have a son with the exact same thing as yours, with his NF affecting the right side of his face. I will keep your son and your family in my thoughts. I want you to know there is someone else out there who is going through almost the exact same thing! My son is 4 now...he is doing excellent. God chose us for a reason. He knew we, and especially our sons, could handle it. Your son, like mine, was chosen so the work of God could be displayed in his life. Good luck in everything! Sincerely, Mary Rose

Lace Marie Williams-Tinajero, Ph.D. said...

Dear Mary Rose,

Thank you for taking the time to contact us and tell us about your son. It is encouraging to know that we are not alone, especially with so many unknowns of what our son's future holds because of NF1. I'm glad that your son is doing excellent.