We were more than pleased with our visit with Dr. O'Neill and his nurse practitioner at Seattle Children's Neuro-Oncology yesterday afternoon. What an amazing place! Here are the latest details, starting with what we know for sure.
1) The baby is doing fine and is on target for growth and development, especially happiness!
2) The baby has NF 1.
2) The baby has left-wing Sphenoid Dysplasia (a condition marked by decalcification and abnormal growth of the side skull bone).
3) The baby has developed a lump in the rib area on the left side, probably a neurofibroma associated with NF 1. We noticed it in the last 2 weeks. Dr. O'Neill said that no x-ray is necessary because the specialists would do nothing about it at this point in baby Tito's life. The best thing to do is to monitor it with future scans.
4) The baby's soft spot on the head has closed early, yet the Dr. feels this is ok and within normal limits of development.
5) The baby will have a full body scan in three months to monitor the manifestations of his NF 1.
Here is what we do not know for sure, which is the best news of all:
1) It is uncertain whether the baby has a mass of some sort in the brain. After looking at the MRI and CT studies, the Dr. didn't see anything of concern that would require surgery. He thinks the Sphenoid Dysplasia is causing the baby's left eye to protrude, which is nothing out of the ordinary with NF 1 patients. To make sure, the Dr. is sending the MRI and CT scans to be presented before the Tumor Board at Seattle Children's next Wednesday, Oct. 7th. Dr. O'Neill will call us with more information after the meeting.
2) Dr. O'Neill will check to see if plastic surgery would help with the baby's disfigurement on the left side of his head and face due to his Sphenoid Dysplasia.
What comes next for us? We are still in Seattle. Today at 3pm, we return to Children's for a visit with the Ophthalmology department. There is still concern with the baby's left eye.
Thanks again for each and every one of you. You have amazed us with your support and concern. We will update the blog again after our visit today. Keep the prayers coming!