Our son is now 5 1/2 months old. We cannot describe what a joy he is in our lives. Who ever knew that a child could be such a life-changing blessing? The toughest thing is looking at him and knowing that he has Neurofibromatosis type 1 (NF 1). What does this mean?
NF 1 is a congenital disorder. Some 1 in 3,000 babies are born with it. It is a peculiar condition. No one can predict how NF 1 will play out in a person's life. It just happens to be the case that our baby has developed some of the features of NF 1 very early, starting with cafe-au-lait spots on his skin when he was 7 weeks old. These spots spread to his right eye by the time he was two months old. The good news is that Tito can see.
The concerning part is that the baby has developed a complex set of rare problems in his brain, all related to his NF. These include:
-a cyst -a plexiform neurofibroma mass -sphenoid dysplasia (sphenoid bone deformation at the left temple) -thickening of the dura (the lining between the brain and skull) -bulging left eye
Here is the latest. On Wednesday, September 16, the baby will have a CT scan. This study, along with the MRI back on August 7th, will help the group of doctors in Seattle determine a course of treatment. Depending on the results of the CT scan tomorrow, we may be heading to Seattle Children's Hospital by this Wednesday or Thursday. If the baby's manifestations require no immediate attention, then we are scheduled with a group of doctors on September 30th in Seattle. I think the immediate goal is to try to save the left protruding eye.
We are hopeful that help can finally reach our son after being caught up in the Spokane medical system where no help can be given to the baby and where the baby's doctors have not collaborated. (Baby Tito has seen 7 doctors since his birth).
Thanks to you all for your caring thoughts, notes, and prayers. You make all the difference as we face challenging moments.