Tuesday, January 4, 2011

NIH trip Jan 2-7, 2011 (II)

Tuesday, January 4, 2011

Day 3: Pediatric Oncology and Second Day @ Audiology

Jacob's first appointment this morning was with Pediatric Oncology.  Jacob was interviewed and examined by Dr. Kathy Warren and a very nice fellow.  All the fellows at NIH have already completed their medical training, have been doctors and decided to return do specific research.  I really like this clinic.  They have a great play room with lots of toys and games for the big and little kids to enjoy.  There is always an intern in the play area to interact with the patients and children.

Jacob and I met with Dr. Warren and her fellow for about an hour. They usually see the patient individually, but since Jacob had a limited amount of time, he saw them both at the same time.  They asked Jacob a series of questions, like how has he been feeling, how is school going for him, is he suffering from any pain, has anything changed since last visit, etc etc. They looked at Jacob's skin, eyes, nose, mouth, ears. They did strength and balance testing.  After looking in Jacob's ears the fellow said it is very apparent that Jacob's right inner ear is "not normal". This comment has been replaying in my head all day.  This is the first time anyone has said that anything is "obvious" after viewing the ear from the outside.  Jacob's circulation in his right hand was also discussed.  There is a very noticeable difference in temperature when touching Jacob's right hand compared to the left.  His right hand always feels cooler and this winter he has complained of pain when being outside.  We have a hard time warming his hand up and he suffers from tingling as the cold wears off.  Neither doctor had any solutions to this problem.  I was wondering if they made circulation arm socks or something, lol.  Can you picture that?  I'm convinced we see Dr. Warren more for her (or really her clinic's) information than for us, but overall this is our main purpose for bringing Jacob - so his special case of Neurofibromatosis Type 2 (NF2) can be researched and compared to normal genetics and others with NF2, hopefully finding a cure one day.  Dr. Warren said that they will look at Jacob's scans Thursday afternoon with the rest of Jacob's doctors, including Dr A. It was a painless visit for Jacob and Jacob liked the fellow.  He was from Atlanta, GA and he loved Jacob's Georgia boots. Suppose it reminded him of his roots. 

Jacob was late for his ABR and Audiogram (2 hours).  It made our day a little longer than I originally expected, but not by too much. The ABR and Audiogram took two hours.  Jacob returned well rested (he can sleep during the ABR testing) and picking at the sticky glue they use to place electrodes all over his forehead, ears and scalp.  

Note: ABR stands for Auditory Brainstem Response.  It tests the ear's reactions to sound, traveling through the nerve into the brain.  An Audiogram tests only the hearing.

The Audiologist who performed Jacob's hearing tests (as well as the balance vestibular testing yesterday) was overflowing with information.  He said Jacob's hearing is still within normal ranges, but the signals are slower getting to the brain. Six months ago it was only on the right side, now it is on both sides. He also said that Jacob suffers from Auditory Processing disorder due to the Vestibular Schwanomas (acoustic ear tumors). Speech and sounds are getting to his ears fine.  His ears are in perfect working order, but the nerves are being effected by the tumors and not processing info to brain right. Speech and sounds get screwed up in transmission.

He recommended an "FM" broadcasting system for Jacob, but there aren't many states or schools using them. A teacher wears a mic, the child has a receiver on their hip (belt or pocket) and wears ear buds.  This system blocks out any outside/background noise or interruptions.  Proven to also control learning problems for children with ADHD and ADD.  Auditory Processing disorder is often misdiagnosed as ADHD and ADD.

After our conversation with the Audiologist we had lunch and took Jacob and Gavin to get their ID badges.  We also had to have Jacob's badge bar coded, because he is the patient and they are now using a bar code system for blood work and prescriptions.  I got more coffee and it was back up to 5th floor clinic to finish up with Audiology.

The last testing Jacob had done today was explained to me as an extension of the ABR and Audiogram combined to obtain more detailed information.

The results were the same as the tests from before lunch. The only thing the Audiologist added was to create an extremely quiet studying area for Jacob and for us to do our best to explain things and repeat things in situations when speech and sounds are contaminated.  Like loud speakers and intercoms.

We left the clinical center around 3:00pm.  We enjoyed relaxing for the next few hours before going to the Capitals Hockey Game at the DC Verizon Center!!  At the beginning of last week I did a little research online about things to do in DC and I found contact information for the Capitals' Director of Community Relations.  I thought a hockey game would be something different and fun for the kids to do.  Just this morning I received a response from the director that she received my email and left three tickets for the kids and me at the Verizon Center's will call.  How wonderful!  We were so excited.  We were going to see the Washington, DC Capitals play against the Tampa Bay, FL Lightening.  Little did I know they were tied for first place in their hockey division and this was a huge game for them!  At 5:00 pm we boarded the Metro subway and went to Jacob, Brie and Gavin's first hockey game.  We had so much fun.  Even though we are from Florida and Tampa Bay is Thomas' hometown the kids got Caps gear and looked great sporting the Red! The seats were fantastic, the music was awesome, the fights were nuts and the players and fans were extremely entertaining.  We laughed, danced, yelled, and ate stadium food.  It was a great way to get rid of some heavy stress. The kids and I loved it so much.  Thank you so much, Capitals!! Sorry you didn't win.

Now I am listening to all three of my beautiful children snore... missing my Thomas... and missing my Grissom... trying to unwind and mentally prepare for what tomorrow will bring. 

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