Two weeks with the fam and a good eater!

Family is great.  We honestly don't get to spend enough time with them.  To fix this, my mom and my sister Becky and her husband Mark came to visit us.  It was  a great visit, except I had to work!  And work got pretty busy, but that didn't put a damper on things though.  We got around the entire island, even a few places not in the visit guides!

Mom, Becky, and Luke at the beach.  I think they were making him a sand cake...to which he tried to eat.

Grandma and Luke doing a little swimmin'.  He doesn't ever go into the pool....unless he falls.  Which is pretty funny since we are always there.  He doesn't actually seem to mind much at all!

The best part of the trip was that I finally got to take my wife on a night out!  Grandma took the kids and we went on a date night.  How hot was it?  We even wore real shoes!

Real shoes and all!

Melissa still can't believe I work something other than flip-flops!  I can't believe I brought them!

Those drinks were awesome.  My drink was made from a concoction of booze soaked in pineapple.  Good enough to slap your momma!

But the kids are still doing great.  Claire keeps getting stronger and stronger.  She is learning how to sit up more and more.  I mean, she must love this, right?

Such a happy baby!  Almost to 16 pounds!

The doctors here have bent over BACKWARDS for us here.  Just like our doc, Fran, back home.  If your kid needs a good doc at Barksdale, go see her in Peds.  She is wonderful dealing with a system that isn't.  The docs here are going to re do most of her tests as no one here agrees with LSU-S' diagnosis, including us.  Still looking for answers...

NOM NOM NOM

That kid still loves to eat!  He will actually eat an entire burger, which is better than his usual french fry diet.  We typically have to trick him to eat something else by offering him a fry.  Smart kid though, he knows how to work his parents!

Well, dear readers, it's time to go to bed.  As a note: if you are in customer service, try not to piss off my wife if at all possible.  It usually doesn't work out.  

A Christmas Story (A little late)

Right before Christmas, Claire had her first physical therapy appointment out here. I was grateful for the timing because Claire had taken a slight turn for the worse the few days prior, and we needed another set of eyes to evaluate her. At the end of our appointment she expressed concern over Claire's obvious lack of development and asked if I had any other appointments scheduled. When I told her that I was getting a second opinion with neurology on Jan. 8th, she said, "Do you have a minute? Let me introduce you to the  doctor." 

Excuse me? A Neurologist who is just waiting to talk to patients? I had to wait 6 months to even be scheduled for a consultation in Shreveport! And then you will never guess what happened...

 In walked our therapist with the Neurologist, the Geneticist, and a Pediatric Developmental Specialist!! We had a one hour impromptu meeting where they all evaluated Claire, I gave her medical history (they about fell over when I whipped out my email that listed Claire's 25 metabolic panels that were run!), and we discussed my primary concerns. 


 For the first time, the doctors said they agree with me. Whereas the doctors in Shreveport dismissed my concerns that she has a processing issue between her brain and eyes, these doctors agree. They informed me that they work together as a team at Tripler Army Medical Hospital, and asked if Patrick and I were open to additional testing. Um....YES!!!! 


Of course as the doctors were leaving, I was crying. I thanked them for their immense display of compassion and understanding because it was exactly what Patrick and I desperately needed right before Christmas.

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Fast forward to two days ago, our big Jan. 8th appointment, and the story gets even better. 

 First, Patrick was able to get off work, so the doctors had a much calmer mommy to deal with, which was better for all involved! We had SIX doctors for over an hour developing a complex gameplan for moving forward. Basically, Claire is still a mystery; however, based on her symptoms, the team is not convinced that LSUS was extensive enough in their testing. So, we are going to start from scratch to ensure that nothing was missed. And, these doctors are very doubtful that she is actually experiencing seizures!

The icing on the cake was at the end of the appointment when the head of Genetics asked if there was anything they could do for Luke while we were out here. I asked for a second opinion with opthamology because his eye still crosses. Then, the pulmonologist asked when Luke had his last workup (we had been discussing our hospital stays with pneumonia), and I said he hadn't had one. The doctor asked if we would like one conducted on Luke because he had worked for three years with a clinic specializing in Down Syndrome patients, and it would be beneficial for Luke to have in his medical records!

So, again, I have no idea how we stumbled into this amazing opportunity. Remember, Patrick was not even supposed to be on this deployment, let alone have this position in Hawaii. We will be forever grateful that Patrick ended up by such an amazing hospital, and that my job, daycare, and the kids' therapists all arranged for us to be gone for three months, and that our friends and family were willing to take care of the dogs and house for us so we could have this opportunity.

All I can say is that if you do not believe in miracles, simply take one look at our situation, and reconsider the possibility.

Christmas in the Islands

So we didn't want to hang out in our OWN hotel room in Hawaii for Christmas...so we got another one on another island.  We found out that one of the local airlines has a great deal for military and we hopped over to Kauai.  The island couldn't be more different than Oahu!  Oahu, where Honolulu is located, is more of a concrete jungle on the southern end.  The northern part is really secluded, but all the same.  Kauai is totally quiet, with a bunch of two lane highways.  A lot of small surfing towns and a bunch of roosters!  Crazy.  

This is the view from our room.  This was the morning that we left.  The other two days were just dreary and rainy!  Go ahead, feel bad for us...

This was the Waimea Canyon.  Pretty ugly, we know.  We were forced to to look at this by armed guards.  Ok, not really.  Our friends told us about this.  Absolutely amazing!

Claire-Bear decided to dress up this year!  Ok, this was her first year, but whatever!

My sweet little girl!  Now that she doesn't scream all day, it's hard not to fall in love!

 Then we had to come home, but we still had time for fun!  The rest of the week of Christmas was min-manning, so we hit a few of the beaches around the island.  A local family built this:

Hawaii Snow Man!

Claire-Bear is starting to finally sit up!  Though something to her right must be pretty interesting!

This is the view at the top of a pretty long hike, but it's stroller friendly, so that makes it worth it!  That thing in the middle is a light house...so we are actually above it!  Again, pretty terrible.