Update from Eli's doctor appointments today

Today Eli had two doctor appointments in Houston. The first one was for a hearing test to see if the tumor they found in his left ear is affecting his hearing. The first thing they did was check the pressure in his ears. The right was perfect and the left not so much. Then they put Eli and myself in a sound proof box and put these little ear buds in his ears so they could test each ear separately. The right ear was perfect and the left he didn't respond to any sounds at all. My husband was outside the box with the audiologist and he said that she was calling his name and he never looked to the left one time. After that test she took us to another room to check a high frequency sound wave. She said the sound waves would bounce off his ear drum and come back to the ear plug and she would be able to record this and see how well he hears them. Again the right was perfect and the left didn't pick up anything. She said she wants to do one more test before they said he can't hear out of the left ear. She said he has to be asleep for this test and that someone will call me to schedule it. I just wish they would say it instead of drawing it out like this. It's pretty obvious that he can't hear out of his left ear. I mean really how many tests does he have to fail before they just say it. I'm also starting to get impatient with the NF1 situation. How many parts of the body does this tumor have to affect before they say OK we really need to start some kind of treatment to try to slow them down. I understand we are waiting on the clinical trial in Indiana to come through with lowering the age limit so Eli can take their medication. But how long are they going to wait before they take action and do something while we wait. I feel like we are wasting precious time just sitting around and waiting.

Eli also had an appointment with the general surgeon to replace the temporary g tube with the Mic-Key button. I was really afraid that it would hurt Eli, but he really didn't seem too bothered by it. It was a real quick process. They did it in the doctors office. They just laid him on the table and measured what size button he would need. After that they put the button in and filled the balloon with water to keep in from coming out and they were all done. It is so much easier for Eli. There is nothing pulling and causing him pain like with that stupid temporary tube. At least he in comfortable in that aspect now. I just wish we could straighten out all the other issues now.

The before picture with the temp tube

The after picture with the Mic-Key button