Trip of a Lifetime

I have been sitting here for over a week trying to decide how to summarize the past three months of our lives, but I don't think there are words for our experience.  Rewind to three months ago: we had several ill family members, Patrick was travelling constantly for work, and doctors had informed me that Claire was suffering from seizures and atrophy in her brain.  To say that we were in an emotionally low place is an understatement; however, by the grace of God, we found hope in Hawaii.

Being in a beautiful, tropical location was simply the icing on the cake. Nothing in this world will ever replace the opportunity for our family to be together as we sought a trustworthy medical team to reassess Claire's condition. Whereas doctors in Shreveport left us with little hope, the doctors in Hawaii listened to our concerns, consulted with one another, and while we still do not have definite answers, we at least now have the peace of mind that we have done everything in our power to find a cause of her currently undiagnosed neurological condition.

The only thing we know for sure is that she was born with less white matter in her brain than normal.  Essentially, this is the insulation that surrounds neurons which impacts gross motor and muscle tone. We still have no idea why or what this means for her future.  Several tests are pending, and the wait will be weeks.

Regardless of what the tests tell us, if anything, we will forever have the memories of these three perfect months together as a family.

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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.  

Watching for Whales

Sorry this post is a little late. I uploaded all of the pictures, and then forgot to finish. You see, it's just that our schedule is so busy out here. :) Kidding. It isn't.

For those of you who knew me in Minot, you may remember my strange obsession with finding a moose. Well, it is no different here in Hawaii, only searching for whales is way more fun! It is officially whale season, and we are determined to see one. Apparently, the best place to see them is on a hike up to a lighthouse. It's actually perfect because it is a paved path, so the stroller can make it. Notice I only said stroller. It might kill one of us pushing the dang thing up the mountain. The views are absolutely breathtaking.

When we are not busy climbing up the side of a mountain, we love to just hang out at the beach. On the southwest side of the island are some man-made lagoons, which stop the waves. Luke is in love. In fact, one day it started raining and the wind was blowing like crazy, and I had to drag my screaming/kicking child out of the ocean. Glad he got over his fear.

If you look very closely, you will notice that Claire is actually showing off her Christmas present! She wanted a pair of diamonds to match her mommy's, and of course, daddy said yes!!

Christmas pictures to come soon...if I can find time in our schedule....

In search of your own beach...

So, Claire has been eating us out of house and home.  No seriously.  She has gone from eating 12ish ounces of formula a day (and maybe a few bites of cereal) to eating two jars of Step 3 baby food a day with 18-24 ounces of formula a day!  Crazy!  Plus she has been getting these in:

Mom, stop!  I don't want you to pick my nose!

 But don't worry.  She is still happy with us.  Been putting on weight too!  Up to 15 pounds (by our scale)!  But daddy has tried to keep momma from weighing her EVERY day.

So happy!

 Luke and Claire got to go to the Children's Museum here in Honolulu.  They really seemed to like it.  And by that I mean, Luke had a great time while Claire nestled into Melissa's chest.  She is good at that.  That being said, she did like the colors and the shapes.  Luke did find something close to Grandpa Malone's heart...

Grandpa does this everyday?!?!?!  This is easy!  I know how to bang a hammer!  I can do this all day long!

Then Luke found out how much Law School would cost.  No matter.  Grandpa Malone still loves him since it's the closest to a lawyer of any of his offspring ever got!  (Hi Mike!)

 Since my days are filled with work (no really) and I have to go in for a few hours every Sunday, my Saturday's are filled with exploration!  We typically drive up to the North Shore and see what we can find.  We rarely ever stop at the same place twice, but we have our favorites.

So we stopped at a fruit stand where Melissa loves to get her fried banana and a bag of fruit.  I had parked across the street for the first time, and realized you could go through the fence and pack into the woods.  We followed the path knowing that the ocean was only like 100 yards away.  We got a real treat!  All of these banyan trees made this great grove.  I took a panaramic picture with my phone.  You can see Melissa and Claire on the left.  

This is what was waiting for us once we got through the trees.  Amazing what you can find even on a populated area like Oah'u! 

Midway stop at a random beach on the long trek along the North Shore.  Lots for Luke to play with!   

Having dinner after our adventure!

And finally, Luke is picking out stuff for us to do next weekend in our Military  Hawaii Guide!  I think he just likes the front picture!

We really are having a great time out here.  Hopefully, we will be getting a bigger room here in the next few days!  It would be good, we have a lot of stuff in this small room we have now.  Next week we get to go to Kuaui!  Should be a good Christmas trip!  Wish us luck!

Week 2: Pacific Adventures

This week our schedules were jam-packed! While Patrick attended a conference in the Philippines, the kiddos and I stayed VERY busy :)

First, we spent considerable time sun bathing at the beach.

Occasionally, we took a little time to a little baby exercise and played patty-cake with Claire's feet.

Our real adventure was visiting the Children's Museum, which was AWESOME!! Luke made lots of new friends.

And they even had areas for babies to play!

But, all that excitement wore us out.

 So we took some naps on the beach in the afternoons (don't worry - we slept under our beach umbrella).

A few afternoons it was too rainy for the beach, so we just played in our hotel. Claire realized she could rock a cute ponytail to calm her crazy curls!

It seemed shameful to spend time in our room when we were in such a fun place, so we decided to go explore the outlet mall that is only 20 minutes from us. I'm sure they had great deals, but Luke wasn't too interested in letting me shop. I thought giving him a break from the stroller might be a good idea. It wasn't.

On of my favorite things to do is just drive around the island. This picture just doesn't do it justice.

When the good weather finally returned, we headed for another day at the beach. Notice the trend that our favorite thing to do here is sleep. Claire drank too much and passed out for a few hours. She was just trying to be like Crazy Uncle Mike. :)

All that rest paid off because she spent that evening playing with her favorite frog doll. He sings the ABCs, and she can't stop giggling while he sings.

Now that Claire is getting more animated, Luke loves to play with her. It is hysterical to watch him try to entertain her, and one of these days I will capture some good pictures. For now, it is easier to capture when they finally wear each other out!

When we woke up Saturday morning, I told Luke that daddy was coming home.....

....and he was VERY happy to see him.