NIH Trip Jan 2-7, 2011

Sunday, January 2, 2011

Day 1: Travel Day 

We started our day in Tallahassee at 7:30 am.  After riding in a car, on 2 planes, the DC Metro subway and in a police car, Jacob, Brie, Gavin and I finally made it to the NIH Children's Inn at 9:00 pm.  

 Let me just say I am writing an email to US Airways expressing my distaste in our travel day with them on Sunday.

Monday, January 3, 2011

Day 2: MRIs, CTs, and Balance Testing

Today has left me with the knowledge of a whole new definition of tired.

Starting the day I knew we would spend the entire day at the Clinical Center with very little time in between Jacob's appointments.

After arriving at the Clinical Center, Jacob was sent directly to have an IV placed.  The IV specialist assured Jacob he had great veins and she would get it in on the first try.  She lied.  It took many sticks and a lot of digging in Jacob's arm to get the IV in. She said Jacob has bad scarring in his right arm, in his inner elbow veins. I'm not surprised.  Jacob wore the IV all day because we didn't know if his CT at 4:00 pm would require contrast.  At 10:00 am Jacob was taken back for his brain and spine MRI.  I wish I had taken a photo of Jacob in his paper PJ pants and Georgia boots.  Very cute.

While Jacob was having his pictures taken Brie and I got coffee and took Gavin to the big playroom.  The only drama we had in the next three hours was a lost sippy cup and another little girl having physical therapy in the playroom that Gavin was extremely worried about because she had a walker and was crying.  Gavin met a super sweet guinea pig named Harmony.

Right before going back to Radiology, Brie and I went to Security to get our extended visitor badges.  (Mine and Jacob's from December of 2009 have expired).  I wasn't expecting them to tell me Gavin must have one also.  Just something else to remind me how big he is getting, and how fast! 

Jacob's MRI was done at 12:30.

We inhaled our lunch and took Jacob to the 5th Floor Audiology Clinic.

All of the clinics and appointments tend to be very much on time and very little nonsense before seeing their patients.  Jacob went back promptly at 1:00 pm. I was informed Jacob would be doing 3 hours of balance testing today. The usual is only for 2 hours, but because of Jacob's results last time they wanted to do more extensive testing. I'm not sure why.  I spoke with one of the specialist and he said he will have more results for me tomorrow when Jacob returns for his ABR and Audiogram.  Jacob's input is more difficult to measure due to only having one eye.  He did say Jacob's overall balance is better this trip, but this could be due to Jacob being familiar with the testing.  He is worried that the signals are not traveling to the brain as fast as before.  Jacob's reaction time is slower.  All of the balance testing gives us information on how the bilateral vestibular schwanomas (acoustic tumors) are effecting Jacob's balance and brain functions.  He is the same "PhD" who took care of Jacob last year when he had the same testing.  I also like that about NIH.  The same group of techs, doctors, specialists always see us.

Gavin and Brie waited patiently for another 3 hours while Jacob did his tests.  They even took a good long nap together.  I was very jealous.  Thank goodness for iPods, iTouches, Umizoomi, Toy Story and a notebook and pen. When they weren't sleeping, they were still occupied.

Jacob was done with the vestibular testing at 3:55 pm.  Just in time for us to haul butt downstairs for his 4:00 pm CT scan.  Jacob was very happy to know he didn't have to have contrast and he got his IV out.

The CT scan was an ueventful "piece of cake" according to Jacob, as was the 2nd brain MRI.

Finally Jacob was all done and we got to head back down the hill to the cozy Children's Inn.  We ate dinner, played in the two different playrooms, drew and colored in the art room while Brie made bead bracelets.  The big kids played xbox and chatted on facebook.  I washed clothes and had a tubby with Gavin.

I think I could sleep standing up right now......I am signing off.

Thank you all for your continued prayers.  It means so much to our family.

Gavin is on the couch to the left, Brie on the right

Jacob is in the room in the picture below, in the dark, in a space ship chair, with an alien headset on, being asked questions and monitored.  I didn't get any photos of all of the other tests they did, but ask him about them.  He says they are super cool!!