Monday, June 27, 2011

Catching Up: How we Spent Father's Day

We had an absolutely fabulous day on Father's Day.  We spent the morning and afternoon on Lake Mead with Kristin & Corby and their boys on the boat.  It was a nice treat getting to go out on the boat with them.  I love watching the "big boys" all play in the water and ride the tube.  Josh was a bit braver this year than he was last year, but still didn't get in the tube.  That's alright.  He reminds me of Chrystal when we were little and mom and dad had a boat.  Chrystal would get in the boat while it was on the trailer and refused to get out until it was on the trailer again and out of the water.  She was terrified of the water.  Me on the other hand tried to come up with every excuse I could to get in the lake and out of the boat.  Josh does get out of the boat though while we were beached on a little shore and had lots of fun playing in the sand.  Addy wasn't really sure of the water, but did okay as long as she was being held and not too far if she was on the sandy part.  She even got in the tube this time (Kincaid did too).   All 4 of the big boys cried when it was time to go home, a sure sign they were all having lots of fun.  I don't want to think about the end of the summer, because by the end of the summer we'll be losing Kristin and family...I'm not sure who is going to be more sad; me or the boys or Addy...we'll be losing our dearest friends.  That's the way it is though in the AF - thankfully it's a pretty small world in the AF though and we can  hope to be stationed with them again sometime in the future and am certain we'll meet up on travels and adventures.
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Our Summer Quest

So last year I remember when we first got here thinking how surprising it was with the heat that there weren't more splash pads.  I mean really, it gets a bit hot here you know!  I only knew of one, the one that we experienced our first trip to the ER for if you remember.  The splash pad was part of a park, a nice park but one for bigger kids.  Not awful last year with Addy being pretty small...but I knew this summer it wouldn't be the ideal spot for us (the playground equipment is designed I think for the 7 or 8 year old and up).  Well...turns out I just hadn't looked  hard enough.  There are a wealth of them through the city and neighboring cities.  So this summer our quest is to go play at ALL of them.  Some of them are a drive (40 minutes or more) and some are much closer.  We have all summer though and it's a fun goal!  So far we've been to 8 out of 17 (unfortunately plans for going to one today were altered since I feel flu-ish).  I thought I'd share some pictures from our adventures so far though.  Addy gets super excited about the splash pads, but won't get in the water.  Noah loves the water (no surprise there) but also seems to play just as much on the playground equipment.  He also manages to make friends with whoever happens to be there at the same time, regardless if we know the kids or not.  I love that and honestly he's pushing me to be a bit more outgoing.  Josh seems to enjoy the splash pads more than the pool - he loves to run and jump and run and jump and "box" the water.  It's definitely a high light of our week, we've made a goal to go twice a week with one day being Thursday after Addy has speech in the morning.
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Here's our list on the fridge, we've marked the ones we've been to and also rated them 1 - 5 (5 being super, duper fun)
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Addy was checking out her shoes in the one picture above, she loves shoes and all things sparkly/glittery
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Thursday, June 23, 2011

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.
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Sunday, June 12, 2011

Friends

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These four boys...they steal your heart.  Our boys are so very blessed to have such wonderful friends...I'm so glad, thankful, and just in awe of their friendship.  It is an amazing thing, something that happens more with military families probably (maybe?) than with other families, your friends cross a line from friends to family.  You don't quite know when it happens, but it does.  And years from now I know that these memories will be more precious than they are now.

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And then there's Addy & her buddy.  She loves him to pieces; Kristin and I joke that we're going to have the pictures of them together as babies one day at their wedding.  (No, we're not going to force a wedding, no worries there...but then again if it happened I certainly wouldn't argue!).  Here Addy was laying a big smooch on her buddy.  He quickly pushed her away and had a look like "what are you doing?  I'm playing here!"  But it was too cute not keep the pictures.

Saturday, June 11, 2011

Summer Fun

We spent a couple days this week at some spray grounds, another day at the pool with friends, and got to welcome home a friend from far-away-work!  What a great week!  We also got to end it with a family picnic for MOPS at the park. 
Addison isn't too sure yet about the water at the spray grounds, but she seems to enjoy being outside and is happy just the same.  The boys run around like wild men - no surprise there!  Here are just a few pictures of the kids having fun this week.  I think we are going to make a summer goal to try every splash ground in Las Vegas, North Las Vegas, and Henderson (or at least the ones that I found on the Park & Rec websites for each city).  It will give us something to get out and do every week (twice a week probably actually) and hopefully we'll have some friends come join us on occasion!
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Wednesday, June 8, 2011

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!
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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.  
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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.  
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Tuesday, June 7, 2011

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.
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Sunday, June 5, 2011

Catching Up??

We have had a crazy, busy, fun-filled, couple of weeks!  It started with Mike being out of town for the week, promptly followed by Chrystal flying in to visit the day after he left.  We then left the very next morning and spent four days in San Diego - which was so great!  We went to the Wild Animal Park, Sea World, and Legoland, and of course had dinner at Chick-fil-a and Anthony's and went to the beach and saw the cardiologist with Addy and the geneticist, too.  It was a wonderful week and while we didn't get any "answers" specifically for Addy we learned that her heart is great and her head has grown.  The last week was full of appointments - mostly for Josh.  Josh's tummy woes are still causing problems.  He has C-diff - which is from all the antibotics he's been taking for the sinus infection that won't go away.  It seems though that it's likely more than just that since it's been going on so long so we will also be seeing a GI specialist for him when the authorization goes through.  He also had a CT scan again to see if the sinus infection has finally fled!  Let us hope so!  Dermatology follow-up was good for him though, he still has some problem areas but is looking better than he was. 
I took some family photos for some friends on Monday and have been editing them when I could squeeze in time, too.  I have so much still to learn on doing a photo shoot for people where I need to direct a bit more and was so nervous I don't think I did my best shooting, but there were some good shots thankfully!  We have a part 2 in the plans soon on the Strip and I'm excited about it.  I hope that I'll be a little more comfortable and not make some of the basic mistakes I did last time.  I was so relieved when she called tonight after getting the discs and said they loved them though!  Yeah! 
We had a birthday party and small group tonight and last night we took the boys on a date during Give Parents a Break.  How nice it was to have some time with them to do something special.  We went to dinner at a buffet and then took them to see Kung Foo Panda 2. 
So I know the blog has been neglected for a couple weeks...I'm sorry about that.  I'll try to catch up and have some "old" posts popping up in the next few days.  I am updating the links to pictures though so you can at least see them.  I will warn you though - there are a ridiculous amount TON of pictures from our San Diego trip...especially Legoland!