San Diego Retreat

I am over a week late...but better late than never right?  Mike I spent 4 days, yes that's right 4 days, in San Diego last week - alone, completely and utterly alone.  Mike's mom flew in on Sunday afternoon and stayed with our 3 crazy sweet children.  I know that they had a fabulous time with Mema - Josh woke up Monday after she left and was in tears when I had to remind him that Mema had flown home already.
The vacation was absolutely fabulous...it was exactly what we needed.  We didn't have an agenda, we didn't really have a set plan (yes Mom, even us OCD types can fly-by the seat of our pants sometimes).
We used "open table" to make our dinner reservations...it worked out great and we had some delicious food for dinner, and we both got to eat it hot and didn't have to fix anyone else's plates or make sure there was someone sitting down and not trying to climb under the table or eat crayons.  In fact, I didn't see a single crayon at dinner.  We had yummy seafood at a little place on the beach the first night and then took a walk on the pier - where we saw a one-footed pigeon.  The second day was actually our anniversary.  We started our day in Balboa Park walking around enjoying some of the sights and museums.  The Veteran's Memorial, the Japanese Friendship Garden, The Museum of Man, and the Air & Space Center.  It was a beautiful day, it was cool though compared to the desert.    We watched a movie after dinner and then got some appetizers.  It was odd not having to rush back to relieve a baby sitter, a good odd!
The next day we spent playing putt-putt, walking around a little mall area, hanging out in the hot tub at the hotel.  Then after another delicious dinner and some walking around in the park again we saw another movie - crazy lives we live huh?  By Thursday morning, we finally got down to the hotel's workout area for a workout before hitting the road to come home.  I was a bit anxious at that point to see the kids, I missed them so much.  I guess I did better than Mike thought I would do, we only called twice to check on them.  It was the perfect amount of time to do nothing - not have a schedule, relax as we wanted, and not get stir-crazy.  I am so thankful that we had that chance to get away together.  We try and make date nights a priority, do a decent job I think of it - but it was recharging.  And while yes it was time away from the kids (who were getting absolutely spoiled by Mema!) Mike and I both agree that we have to make sure we continue to put our relationship as a priority - however we can.  I hope that the kids as they get bigger see that - that Mike & I love spending time with them, but we love spending time together too and that our marriage is an important thing; because some day they may choose to get married and I want them to make their relationship with their spouse a priority.  I pray, they are just as blessed as we have been.

Catching Up: Day 4 San Diego Lego Land

Our last day in San Diego we had planned on just heading home after a relaxed morning.  Chrystal woke up though and started talking about Legoland...so yep we decided that morning to do Legoland.  Oh wow what an awesome day!  I think Chrystal and I may have been more excited than the three kids.  There was so much to do, so much we could all do together, so much to see!  It was a wonderful way to spend our last day.  I took 10 G or so worth of pictures (in RAW and of course that was before weeding some out...but still!).  Seriously if you want lots of pictures, check out the albums on Facebook.  But here are a few highlights!

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.  

Catching Up: Tuesday May 24th in San Diego

We spent our second day in San Diego with Aunt Chrystal exploring the Wild Animal Park (which is part of the San Diego Zoo but more of a safari.  It was definitely a fun day with a lot to look at and lots to play on.  There were several little park areas and areas for families to explore together.  The animals were especially neat to see, they seemed to have more room and be in more natural environments than zoos typically are.  We even got to take a tram ride to see the giraffes and zebras and rhinos and cheetahs.  The lions weren't out the day we went, there were workers working on their habitat and that just wouldn't have mixed well - construction workers and lions together you know I think the lions would have enjoyed it but not the workers!  There was also a carousel that was included in admission - unlimited rides.  We rode a few times because the boys loved it!  Addison wasn't as sure about it, her first ride didn't seem to be a fun experience.   That evening we had Chick-fil-a for dinner and did a little more driving around and exploring before heading back to the room to watch a new movie.  

Catching Up: Our First Day in San Diego

Here are some high light pictures from our trip to San Diego with Aunt Chrystal.  These are from day 1 - which really was night 1 I suppose since we got in that evening.  We had a decent drive, but no pictures during the drive since I was driving.  We of course had to eat at the "fish place" or Anthony's that night.  Noah wanted to go to the beach so badly, he'd talked about it for days.  It was cool in San Diego and we went that evening to top it off...I thought for sure if I told him he could go swimming he'd get his feet wet and decide it was way too cold to swim!  I didn't want to tell him no swimming and disappoint him, that seemed like a perfect plan.  Only, he kept saying he doesn't get cold, ever like his "batman mommy told him."  And for about 30 - 45 minutes he was jumping, falling, and splashing around in the Pacific proclaiming that it felt great because he doesn't get cold.   Once it was time to head to the van, he decided that maybe I was right and he does get cold.

Christmas-at-Grandma-Taitt's-Round-1

Skateboarding@Meko's

Emails-from-Santa

Tuesday-at-Chuckee-Cheese

Monday=Bounce-House&Garden-Of-Lights