Eli's story ( after the diagnosis)

After we found out what his tumor was I quickly started to google it. Everything I read kept saying this type of tumor is associated with a genetic disorder called neurofibromatosis or NF. I asked the doctors if they thought he had NF. They asked a bunch of questions and looked at his skin. They saw all his birth marks and said that they were called cafe au lait spots and with the amount he has along with the tumor they would clinically diagnosis him with NF1, but to be sure they also took some of his blood for a dna test to diagnosis him that way as well.

The dna test took about a month to come back and it was positive for nf1. For a while all I could do was focus on finding someone to remove his tumor and make him normal. After speaking to a couple of different doctors, even a few out of state I have finally came to terms with the fact that this massive tumor will always be with him. Everyone I've spoken to say that to remove the tumor would do more harm than good. It sucks that he has to suffer, but at least he is here touching mine and everyone else's heart that he meets. In October he was put on an ng tube to help him eat since he still can not swallow and aspirates his formula. He is almost 18 months and weighed in at 18 pounds the other day. So the tube feedings are definitely helping. We are waiting for the gi dr to schedule surgery for them to place a more permanent tube called a g tube or button. He was also diagnosed with severe sleep apnea. During his sleep study he stopped breathing 64 times in an hour and gasped for air 115 times in an hour. Since the diagnosis we have switched most of his care from Dallas to Houston where they are in the process of sending us to different specialist like ent, ophthalmology, heart and lung and gi to get their opinion on the tumor and make sure that he is OK in those areas or if parts of the tumor need to be removed. I'm not really sure what to think or expect from these appointments. I'm not sure how I would feel about them wanting to remove parts of the tumor and not all of it. Some days I still find myself throwing a pity party. I try and remember there are other families and kids going through more then we are and to be thankful for the time we have with our children and to remember the lord has a plan for us.