Catching Up: Day 3 in San Diego - Appointments and Sea World

Wednesday was "the day" for us in San Diego.  This was the day that Addison met with her geneticist and also saw the cardiologist at Balboa Naval Medical Center.  Our morning was pretty relaxed since we didn't need to leave until about 10 that morning.  It was really kind of nice since the kids of course hadn't had naps or gone to bed on time since leaving for our trip.  I really thought that I might be anxious or nervous the morning of Addison's appointments.  Potentially one of the tests could come back positive and change things at least a little bit.  I wasn't anxious though, I was concerned but I wasn't worried.  It is amazing how far God has stretched me and helped me rely on Him during this process.  I blogged earlier about being at peace with things, yet I know that I'm emotional...I'm human and things for me change, my emotions are intense, they are changing and I wondered if I'd have that anxiety come flooding back.  It did not come back.  I wanted to know results, I had a long lists of questions for the geneticist and questions for the cardiologist depending on what the ECHO showed; but I was not anxious.  I just am so glad for God being the same yesterday, today, and tomorrow.  I am so blessed that His word remains true and that never has He left me.  My emotions and feelings change and can be all over the place, they are unreliable, they are crazy at times.  God is constant and His word is true ALL the time!
The boys got to go to the drop-in care at the medical center.  Amazing!  How nice that I knew they would have fun while we waited at appointments.  They weren't just sitting the van watching movies, they weren't going to have to sit and wait with us and I could have Chrystal with me in case I forgot to ask something or didn't remember all the details later.  Loved it! 
Addison met with her geneticist (which by the way it still feels odd to type that Addison has her own geneticist...I mean you know it's not exactly a normal childhood doctor) and the cardiologist.  Here's her quick update medically as far as we know right now.

• Geneticist visit May 25, 2011 had results from the mitochondrial panels that were run in the spring, both were normal. There were additional metabolic blood tests and urine tests run to test for some of the "really bad" things that we could test for and also for some treatable metabolic diseases. The geneticist does not know what caused the brain atrophy and microcephaly and we may never know exactly what caused it. Addison's head is growing though it remains at 3 standard deviations below the growth chart curve. There isn't a known reason right now either for her hearing loss progressing. She also felt that continuing to see the neurologist, audiologist, speech therapist, and ENT were important. Her recommendations were to have follow-up MRI/CT of the brain done annually or bi-annualy since Addison continues to do well developmentally there isn't a need to do them more frequently.
• Cardiologist said that her heart looked great and there were no additional concerns for her heart even though the EKG was abnormal - the ECHO looked perfect.
• Geneticist would like Addison to follow up with an ophthalmologist and we are arranging to see one in Vegas. This is more cautionary as some of the syndromes that are possible do affect vision and Addison has slightly slanted eyes and also small eyes.  Addison's eyes though look exactly like my eyes (according to the geneticist) and I think they look just like Noah's too.
• ENT (in Vegas) would like us to get an X-ray of the sinuses to see if fluid remains because she's had a pretty much constant runny nose and "cold". Options will be discussed after this as to how to best help drain the sinuses, which are under-developed (likely because of the microcephaly).  Currently the referral is approved but they are having it done at Nellis - so I have to wait for them to call me sometime in the next week to schedule it (a tad frustrating...but at least it's approved)
• Addison has a slight sensory processing issue that is being followed quarterly by an occupational therapist, we will also continue to work with her at home between visits.
• Carnetine deficiency will continue to be followed by the endocrinologist, we will have it retested in July.

After Addison's appointments we decided to head to Sea World for the afternoon.  We didn't have a really long time to play and explore park.  I thought it would be okay though because last year while the kids had a lot of fun, it was mostly looking at all the animals and shows.  There were some touching exhibits but not a lot of play area and we'd been traveling and waiting so I didn't want the boys to get too antsy.  We missed all the shows, but there was a new Sesame Street play area that was a huge hit!  We did see lots of the sea animals which was fabulous of course.  Addison wasn't a huge fan of walking through the shark tank - she DID NOT like the sharks swimming above us.