Infusion #3

We made it to infusion number 3. I wasn't sure if I could handle coming again it is so hard to leave my family and go to UNC alone. Now that we're here we are fine and time is moving quickly once we get things rolling. We flew in on Monday this time instead of Sunday because as you read previously this was Nathans one year anniversary. So we took an earlier flight on Monday morning that left at about 7 a.m. and we arrived around 3:30 p.m. the flight was pretty much uneventful unlkess you count that Easton started in with the stomach flu Sunday and still wasn't feeling good when we left so needless to say he had diarrhea4 or 5 times and threw up once other than that he's been good. As soon as we landed and got our car we left to come to the hospital where he had his physical and neuro exam. During this exam I finally got to hear the result of his gag levels since we started and after only one treatment his gag levels are DOWN 45% (now they also had to interject that this was only one test and on person and the results may be different for another patient and with more treatments) but yeahhhh!!!!!!!
So after the infusion we went back to the short stay unit where we stay for the next 24 hours during our last visits he was pretty calm and content to just lay and watch t.v. well that doesn't appear to be the case this time he is up playing being silly this went on pretty much until midnight. Finally at this time he calmed down and went to sleep now I wouldn't call him hyper just energetic and silly he was just being funny playing hide n go seek with the nurses pretending he was driving to work I'm sure the other patients on the unit were grateful when he went to sleep because he was noisy.
Today Wednesday we got up around 8 a.m. and went for a hearing test were we were told that his left ear drum wasn't moving and had some hearing loss more than likely due to the fact that his tube fell out earlier in the winter and now there was a build up of fluid. His right ear however still has a tube and is still functioning and hearing within the normal range so today I've been trying to get a hold of my local geneticist so we can get another tube placed asap if they would only answer there phones or call me back it would be great. I was hoping that with how active Easton was yesterday that today he would be calm but it's not happening he is going stir crazy having to stay in the hospital cooped up I wish they would let me go back to the hotel until they are ready for his regular infusion at least there he has some freedom and the hotel is only about 5 minutes away but when in a clinical trial everything has to be done by the book so for now we will stay at the hospital and endure our imprisonment but I did hear a rumor that hopefully after our 6Th treatment we might be able to just come for out infusion and stay for 24 hours then home so keep your fingers crossed. And I also so heard that there have been a couple of more families that have made it into the study so yeah for them and me I won't have to be doing this alone.
Tomorrow we will get our regular elaprase infusion and also another cognitive test by Dr. Stein I hope this will also show some improvement that would be great. I will be sure to keep everyone posted.