Noah and Myrtle Beach Days 1 and 2 - Ahoy There! Part One

Sorry that I didn't manage to update the blog while we were gone - I didn't think to bring my laptop LOL.  Jeff had his but I didn't want to mess with putting the photos on his computer and then having to put them on mine.  :-)  I did manage to post a short update each night on Facebook, and I'm going to do a post for each day of our wonderful, blessed trip.  That way I can include tons of pictures!!

Before jumping in with the trip details, I want to update just a little about Noah.  He seems to be recovering really well from his surgery (I think I would still be in bed!!).  He is attached to a urine drain bag at all times, and this bag seems to be the straw (or bag) that broke the camels back in terms of mobility.  It means that at all times he's attached to two very large IV pumps/bags, a stomach drain bag, and a urine bag - and for several hours a day he's also attached to a smaller IV pump, and this is just proving to be just about too much for him to manage.  To be honest, I don't know how he's managed even before this!  We do keep all of his bags in his Trunki, which is a great little rolling suitcase/cart, but the tubing is tangling in nightmarish ways.  He is also very protective of both the tube coming out of his stomach and the tube coming out of his bladder, so if he tries to walk he needs to pull the Trunki and he wants to hold both of those tubes to be sure nothing tugs them.  Most of the time he's just choosing not to walk more than a couple of steps unless he can get someone else to carry all of his bags.

He's having a couple of worrisome new symptoms that are getting worse.  First, he's getting very forgetful and is forgetting really big things like his last name or what he did just hours before.  Second, he is trembling or shaking a lot.  Sometimes you can see him, especially if he's using his hands, but most of the time you won't notice unless you're touching him.  It's a subtle but very strong trembling that resembles hard, uncontrollable shivering.  It comes and goes and we can't seem to isolate a trigger.  We've spoken to hospice about it (and they've witnessed it) and we all want to give him a little more time to settle back into a routine and see if this gets any better.  We will follow up with Dr. B but want to avoid a massive cascade of testing and fishing expeditions unless there is a true clinical benefit for Noah.  Chances are that this is just a disease progression thing that is not harmful in and of itself except that it has to be burning a lot of extra energy.

Noah has a hem/onc appointment tomorrow and we're eager to see what his labs look like.  There's a slim chance that his labs could reveal something that's causing the tremors, and we're also very keen to see how his hemoglobin is holding after his last transfusion.  He's losing a fair amount of blood into his urine every day (and will probably always do so) and we're hoping that it isn't enough to have really dropped him too much.

Now, on to the good stuff!  :-)  The theme for the first night and first day at Myrtle Beach was definitely PIRATES!  Our first day was mostly travel.  We got to our hotel mid-afternoon on Monday and were thrilled to find all sorts of surprises on the table in one of the units!

There were beach pails and shovels loaded with snacks and treats for the children and a large packet filled with gift cards and certificates for all sorts of fun.  This, combined with some very very kind gifts from some of you, allowed us to say, "yes" to pretty much everything all week long.

We wasted no time in heading to our first adventure - dinner at the Pirate's Voyage Dinner Show.  This used to be the Dixie Stampede but was converted to a pirate show this summer.  The fun started outside the show where there were tanks with seals, parrots, and other animals.

(Noah in front of the parrot display - notice his trusty buddies Padriag the dragon and Squiddy the octopus) :-)

There were pirates outside . . .

. . . and a wonderful gift shop and dancing pirates inside!  As you can see, yet another octopus made its way into Noah's lap while we were in the gift shop.  :-)

We weren't allowed to take photos during the show, but we had a fantastic time.  There was a 15 foot deep lagoon containing two pirate ships right inside the building, and the show included a huge variety of acts - there were animal acts, singing/dancing, acrobatics, magic tricks, fire tricks (fire eating, setting the lagoon on fire, etc), and all sort of other pirate-y things.  Best of all, David and Jeff got chosen to be in the show!!  David got to pilot a small boat across the lagoon in a race which he won, and he was awarded a neat pirate medallion.  The children were all so thrilled that some of their own had been chosen.

The next day dawned bright and beautiful - this was the view from our room!

We had breakfast in our rooms then the older children and I went down to the beach.  We picked up some shells, enjoyed the view, and had fun getting our feet wet.  After a while William and Matthew set out exploring and came back to tell us they'd found a Starbucks (they ARE their mother's children LOL) so we all went over there and I got them each a treat.

Meanwhile, back at the hotel, Jeff was enjoying spending time with the little ones as they played with some new pirate toys from the gift shop.  (Seriously, he did - he's actually not a big beach guy and doesn't enjoy walking around on the sand.)

Check out that awesome pirate shirt - a hand-me-down from David!

One pirate king and two pirate princess ready for action with swords, pirate muskets, and their flags from the Pirate's Voyage show.  :-)

All of this pirate-y play had them perfectly primed for that afternoon's adventure - after a post-surgical checkup from Noah's hospice nurse, we headed out for a REAL pirate cruise!

Now, I know it's mean to leave you in suspense, but I took 98 bazillion photos and they're taking a while to upload . . . and I'm one tired mommy, so the rest of this post will have to wait until tomorrow.   :-)

Blessings,
Kate