Thursday, January 26, 2012

Is it Wednesday? Um, yes. 

Considering we spent eight hours straight at the clinical center today, we had a great day.  Getting up this morning was hard. Laura and Ali made it safely into Bethesda last night, but not until after midnight.  Staying up for them was well worth the wait!  I’ve been waiting for this for four years now, what’s a few more hours? We stayed up chatting until 2:00 am.  I could’ve spent the entire night with them, talking, laughing and sharing stories.

 We started our day in OP5 for Jacob's vestibular (balance) testing.  We weren't sure if he was still going to have it done, but Chris came out at 9:00 and said they were going to do the "whole shebang," the full three hours.  He did say they wouldn't use it for the study, but rather for clinical purposes and for our information.  I’m ok with that.  Gavin and I came prepared to stay in clinic.  Laura and Ali joined us after Ali's first appointment (bearing gifts of coffee!! Thank you!) and as Laura and I chatted, Ali played sweetly with Gavin.  They did a 100 piece puzzle, looked at magazines and colored.  Gavin was so comfortable wtih Ali.  She had his complete attention and he was a happy boy.  Ali must just be naturally good with little ones.  Ali reminded me of my beautiful Brie today, playing with Gavin.  Jacob, Gavin and I miss Brie so much.  The three hours went by fairly fast it seemed.  We were joined by Angie and Jasmine later, the mom and daughter I mentioned from MRI on Monday. I felt right at home with these moms, like we had been friends for a lifetime.  Jacob came out with Chris at 12:30 and Chris said his balance wasn't that different.  Maybe a little, tiny bit worse than last year, but nothing dramatic.  I was happy to hear that, but a bit puzzled as to why Jacob feels like his balance is changing, or why he complains of losing his balance often.  Good news, though.  We’ll take it!!  Jacob's next appointment was supposed to be after lunch (1:00) but Dr. Kim, the ENT, was in and could see Jacob immediately, so we stayed.  I really paid attention to Dr. Kim today.  There has been some discussion on the NF2 crew about his "bedside manner."  In the past, I’ve never been impressed either way.  Today, I thought he was very professional and spent a good amount of time talking with Jacob and asking him questions.  He waited for me to get Gavin situated with his movie and head phones and didn't mind me recording our meeting.  He was very attentive and respectful to Jacob.  Some of his information may have been odd to me, but he is the doctor and it's his job to give me his opinion.  Jacob and I get to decide what to do with it. 

 First off, he said Jacob's brain tumors look unchanged from August.  It's preliminary, but I'm thinking we will get great news from Dr. A tomorrow about the brain scan (fingers crossed)!  Nothing is written in stone, in my opinion, until Dr. A says it's so.  He asked Jacob the normal questions and Jacob told him about his random ear and leg pain.  Dr. Kim checked Jacob's jaw several times and looked at his overbite.  He asked if Jacob grinds his teeth.  We aren't sure, but I’m guessing no, but he did say it’s possible that the ear pain is from a jaw issue.  I have TMJ and I don't see the similarities, but we will definitely consider the possibility and talk to his dentist about it.  Jacob's orthodontist is trying really hard to fix his overbite, but since Jacob can't have a permanent metal retainer put in, they’re using rubber bands to pull the jaw forward.  The rubber bands won't work unless Jacob wears them…  Dr. Kim also said the knee, calf and outer quad pain could be due to an issue with Jacob's left knee joints.  Not sure how an Ear, Nose and Throat doctor would be an authority on this, but I'm sure he sees all things caring for patients with balance issues.  We will look into that as well.  He did look at Jacob's ears and said what we already knew, no infections.  He gave J the all clear on mouth and nose as well.  Jacob is showing left side forehead facial muscle weakness but it could be due to his craniotomy in 2009. 

Pizza again for the boys for lunch and I had some ok sushi.  It was a relaxing lunch since we had over an hour to sit, eat and just be.  Laura and Ali joined us.  Our nice lunch was almost enough to carry over good feelings to the eye clinic.  Walking in to OP10 and seeing 16 people sitting in the tiny waiting room is a bit deflating.  It's a small waiting room.  Gavin and i posted up in the corner.  The iPod had died so we were back to the coloring books, slinky and slime jar.  Jacob had the visual field test first.  Then we were taken to a hallway and sat in a row of four chairs.  We sat there for an hour.  Gavin was restless and kind of bouncing around the hallway.  We tossed the tiny hackie sack for a while and most people who passed us smiled.  The elderly woman sitting in the last chair asked us about the little crocheted ball we were playing with.  Gavin got a little too much air on one of his "tosses" to me, out of my reach and at the wrong time, and almost hit a clinic worker that was walking by.  It startled her and she was not happy.  She obviously didn't share my sense of humor.  She told us if Gavin couldn't sit in the chairs we would have to go out to the atrium outside the doors of the clinic.  My response would’ve been different if she had been kinder to me, but she wasn't.  She said Gavin playing in the hall was dangerous since there are visually impaired patients in the clinic.  Really?  Hadn't I brought my visually impaired child to the EYE clinic for care or were we just there waiting forever to ruin her day?  I told her that if their clinic was going to see pediatrics and make them wait for hours then they should provide an area for them to play.  Get a wooden bead toy or a little tv or anything child friendly.  I reassured her the little hackie sack would not have hurt her had it hit her in the face!  Darn...  Needless to stay Gavin and I spent the rest of our time on floor 10 in the big area, outside the elevators, away from the eye clinic's visually impaired patients.  Hindsight, she was probably right, but it's all in how you you present things.  She could really use some people skills and some tolerance training.  Maybe she was having a bad day.  Maybe she should’ve realized that WE could be having a bad day (we weren’t, but we could have been!). 

The neuro ophthalmologist Jacob has seen the last two years left and I am happy to say I like her replacement, Edmond J. FitzGibbon, MD.  He came out into the hallway and went over Jacob's visual field results, his eye exam and the Optical Coherence Tomography (OCT). He brought me copies of the test results and I am so ecstatic to report the OCT and Jacob's vision are the same as last year!  His visual field black spots have progressed some since 2009 but he still believes overall Jacob's eye and optic nerve are stable.  He asked me if anyone had discussed any type of radiation for the optic nerve meningioma…   He said it wasn't time to do that yet, but wanted me to think about it if the time does come.  More good news for the day and we were all done with clinics!!

Our evening at the CI was really nice.  Before dinner, Ali and Gavin played air hockey.  I could really see TD's competitive spirit come out in Gavin with every pout at each goal Ali made. I can't believe G is tall enough now for the air hockey table, but he sure his. Jacob and Savannah played pool, or at least tried to, and I just watched, smiling.  At dinner we had a table full of wonderful NIH families, all living with NF or NF2.  The sound of happy teenagers talking and laughing was music to my ears.  It was lighthearted and refreshing to talk about scary movies and which type of cookies are our favorite.  Gavin and I spent an hour in the big playroom.  He made a new friend, Keevan, with whom he has had many short encounters throughout the week. Tonight in the dining room, as Keevan and Gavin were discussing their names and ages, they just spontaneously hugged.  I melted.  This little boy, who will be three in May, is as cute as Gavin and has the sweetest voice.  I loved watching them play, and his mommy, who is ex-Air Force, was nice to talk to as well.  She has an adopted daughter and an older son.  Her husband is active military.  I tried to look up Keevan's diagnosis but I stored it in my head wrong (nice way of saying, “I messed that one up!”).  Will try again tomorrow.  Jacob had another great night hanging out with the girls.  They were disappointed that the hockey equipment was locked away behind the renovations they started today in the lobby.  Gavin went to bed early again due to no napping and I was able to have a long adult conversation with three other mommies face to face!!  I don't remember the last time I was able to do that.  Laura, I wish we had more time together! 

 I've never experienced meeting someone online that I have developed a close relationship with.  I have never been able to meet a family that I have prayed for and spent countless hours thinking about.  It was so simple, yet so amazing, to just watch Jacob and Ali talking at lunch and playing Temple Run on the iPod, listening to them laughing.  These kids have been through so many challenges in their young lives.  You would never know they are living with NF2 , that their dreams have been forced to change and they have daily and weekly struggles that most of us can't even imagine.  I am so proud to be Jacob's mom and feel so blessed to know Ali and Laura and to meet these other moms and their brave children pushing strongly through our broken world.

 Ok, done unwinding.  Night!

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