Jingle Bell

Hope everyone had a wonderful Christmas!

Tree Farm

Again...so behind.  Oh well.  I am attempting to catch up before the end of the year!  So we dug out our trusty old fake Christmas tree on Black Friday--the day we usually set it up--only to find it was missing two legs.  Uh, no.  So we decided to head out to a tree farm and get the real deal. 

This little tree farm was absolutely perfect.  It was cold that day, but sunny and beautiful, and Dakin (kind of) enjoyed getting a tree.  Here is Dakin with Mommy and Nana.

 I wanted a nice pic of Dakin in front of the trees, but he just wouldn't smile.  I only got this half-smile when I told him that Santa doesn't come to boys who don't smile.  (TERRIBLE.  I KNOW).

 Dakin's favorite part was watching me saw down the tree.  See how cute and little ours is??  Since Nana is here and occupying the part of the living room where we would ordinarily put it, we got this little guy to go on the table. 

This was such a neat experience.  The people at the farm were lovely, the day was beautiful, and Dakin got to see where Christmas trees come from, grown on a local farm.  Loved it!!  And we will definitely be making this a tradition from now on!

Strolling for SMARD Sponsors

So, Strolling for SMARD was, like, 2.5 months ago. Yeah.  I am a HUGE slacker.  I have been incredibly busy with the Disney trip and all the holidays, but that doesn't excuse me from talking about the amazing sponsors that helped us raise FIVE THOUSAND dollars for SMARD research.  Here are the others I didn't mention before.  I hope they know how very, very grateful I am to them. 


Camille's Sweet Treats (AMAZING pies, custom cakes and yummy stuff!): (903) 653-1078
Elegant Tan & Boutique (Spray tans, tanning beds and boutique with SUPER cute stuff!): (903) 653-1501
Top Nails: (903) 295-7488
Tire Barn: (903) 297-1890
5S Rentals (Party and event rental--they provided all our tables and chairs for free!): (903) 295-6666
Papacita's Mexican Restaurant: (903) 663-1700
El Rincon Mexican Restaurant: (903) 295-0506
Brookshires White Oak: (903)-297-9896
Kindred Kreations (custom, handmade jewelry!): Facebook Page
271 Wreckers/Auto Salvage (If they don't have what you need, they will find it!): (903) 845-4265
Velvet Moon (Boutique with amazing home decor and clothing!): (903) 297-9580
Shipp's Marine (Maritime supply store): (903) 845-3246
The Cutting Edge (Hair salon): 903-295-0735

Disney 2011--Days 8 and 9

Our final day at Disney had--until we discovered Dakin's fear of characters--one final breakfast with Mickey.  So not going to happen.  We cancelled it and headed to EPCOT instead.  

EPCOT was lovely.  We got to see a real cranberry bog, complete with man in hipwaders--thank you, Ocean Spray.  We also got to visit France (and I got to speak French with a REAL French person for the first time in I don't know how long--FYI I majored in French, so I miss it) and some other countries.  They were having the International Food Festival, so we more or less ate our way around the world.  We did, however, skip the other section of EPCOT, as the small one was getting tired and, despite having promised to go on a ride, flatly refused to do so once we got to the park.  Oh well...we had fun walking around the world!

We came home in the early afternoon only to discover that our hotel had been taken over by TREKKIES.  I kid you not.  We couldn't even park in the handicap section--it was all full of Trekkie mobiles.  ANYWAY. 

For our final night at Disney, we decided to go down to the Benihana that was in our hotel, and ended up seated next to two people dressed in Star Trek regalia.  Interesting dinner conversation...thankfully Daddy and I are both pretty big Sci-Fi nerds (though not so much with Star Trek) that we could carry on a decent dinner conversation.  Dakin oscillated between thinking the guy cooking our food in front of us was really cool to trying to hide from him. To the sweet chef's credit, he made a Mickey head out of fried rice for him and a zucchini and onion train. 

Leaving the trekkies behind, we headed one last time over to Downtown Disney for a few last minute purchases.  It was crowded as heck, so we didn't stay long, but it was a nice way to end the night. 

Next morning up bright and early to the airport, where we were greeted by our very own TSA team to help us (I had called and chatted with the TSA Director at MCO).  Say what you will about the TSA, but we were treated very nicely in all our interactions with them...this team helped us through check-in, security, and stayed with us all the way to the gate.  Unfortunately, our experience with American Airlines was more or less the polar opposite of what we had experienced on the way out, so I have nothing good to say about them. 

The only cool thing on the flight home was that we flew parallel to the coast--Dakin (sitting on my lap again) and I got to see the Gulf Coast all the way from Florida to Texas.  It was amazing!

Of course, once we landed all heck broke loose.  WALKING OUT OF THE PLANE--I mean, two steps outside of the plane door--Dakin's circuit fell off and broke.  Oh yay.  So we had to bag him all the way to the luggage claim, which was fun for him but not for us, and the spare we had in the luggage didn't work great either.  So I worried all the way home until we could get a new one on.

And that, folks, is almost all of our trip!  I do have one more entry I want to make--about some very special friends we got to see while in Florida.  

Disney 2011--Day 7--Sea World and the BEST DAY EVER

Friday of our trip dawned foggy and wet...which would have been a serious bummer if we hadn't been going somewhere wet anyhow--Sea World!!  We headed over, bought some way overpriced ponchos and set about exploring the park.  We had the opportunity to have something really special that day--we had a VIP tour with our own personal tour guide and access to everything.  It was amazing!!  So here we go!

After a slight hiccup getting Nana to the park, we headed off to feed the sea lions.  Which I thought Dakin was really going to dig, but he spotted the GIANT birds waiting around to snatch fish from the sea lions.  Not good--as I have mentioned before, Dakin HATES birds.  So there was much and many assorted fussing about that, and I was worried it was a portend for the rest of the day.  

 But I was so wrong.  Our next stop was a personal visit with a penguin!!  Dakin LOVED meeting Penny and getting to pat her and watch her for a bit.

 Just. Loved. Penny.  On our way out he was saying she was going to find something to eat.  So we let her go get lunch and we checked out her buddies in the exhibit.  They said they like to put different things in the exhibit for the penguins to investigate, and as it was Halloween, well...

 Dakin didn't want to leave the penguins, but we had something equally amazing coming up: feeding the dolphins. 

This was magic.  Absolute magic.  We leaned him over the pool and they came right up to him.  He got to touch them as we fed them.  Magic.  There was another little hiccup when the trainer called the dolphin up on the side so Dakin could touch him better, but since his head was so far over the side the dolphin's fin smacked him in the head.  He didn't care for that at all, and wanted a quick break back in his chair, but got right back up.  (He said later that the dolphin told him 'boo.'  I have no idea where he got that but it was a pretty apt description of what happened!).  He didn't get to touch them as much as I would have liked, but little arms are short and he didn't want the dolphin saying boo again.  

 After that bit of amazingness, we headed to the fancy shmancy restaurant for lunch.  One whole wall of the room is underwater with the sharks from the shark exhibit swimming by.  It was awesome!  Dakin loved watching the sharks and was very interested in the sawtooth sharks ('funny nose shark' in Dakinspeak).  The food was great and the ambience just perfect.  And the girl at the host stand was just in love with Dakin and made him this hat...

 So after that we headed over to another part of our special tour-touching a shark.  Well, Dakin was far more interested in the aquarium in that section, so we more or less skipped it and made our way into the shark tube. 

 We had a bit of time to kill before the One World show we were headed to, so we walked along the promenade where they had all the Halloween stuff set up.  Dakin was thrilled, as you can see.

 We had perfect seats for the show, and Dakin loved almost every minute of it...he really enjoyed watching the whales splashing everyone but didn't like the cheering.  Oh well. 

 Here too I kept trying to capture his face.  He was just enchanted.  Perfect.

 On our way over to the last part of our day, we decided to ride the Manta roller coaster--Daddy and Mommy taking turns, of course.  (VIP tour gets you front of the line...so no waiting! Yay!).  While we took turns, our sweet tour guide suggested we check out this special aquarium right underneath the ride.  It had stingrays in it--check out this picture.  It's awesome!

 There were dragon fish and rays...and the setup was so neat--underwater cave-like.  Dakin sat entranced in front of the rays for a good 20 min while we rode the coaster (which was AWESOME.  Best ride ever!!!!).  Another place he would have stayed all day if we let him...but we had bigger fish to feed. 

And then the most magical moment of the entire day: the stingrays.  We sat Dakin up on the edge of the pool and let him splash his feet in it while we spent way too much money feeding them.  Look at his face.  Just look.

I hate to repeat, but the only word I have is magical.  He just loved the stingrays.  We got soaked, but he loved it.  See?  Best day ever. 

We had the opportunity to do the dolphin show, but Dakin was getting to the end of his strength, so we decided to head home, but not before we hit the gift shop and pretty much bought everything in sight.  We got him a killer whale and a dolphin to go with the stingray he has at home, and upon asking him what he wanted to name them, he replied, "Stingray" both times.  Which was pretty funny, but also told me how much he loved it.

Aren't you glad you stuck around for that?  It was the perfect way to start closing up our trip.  His smile was almost nonstop that day, and I am so glad we had the chance to give him the opportunity to interact with all the animals in a way he could.  BEST DAY EVER.

Disney 2011--Day 5

Wednesday morning we FINALLY got the piece to our battery and headed off to Hollywood Studios for (gasp) another character breakfast.  I really thought Dakin might like this one, as it was with his buddies...Handy Manny, and his beloved Little Einsteins.  Sadly, he spent the majority of the time attempting to hide from them, and thusly we got not a single picture.  But we took some of Daddy with them. 

 So while Dakin watched Little Einsteins on the iPad in between hiding from them, we enjoyed another Mickey head waffle breakfast with that whipped butter...drool....

The other main reason we had come to Hollywood Studios was the Disney Junior Live show.  We walked across the park to where the show plays, met a lovely gentleman who gave us special seating, and headed into the show.  I was a little nervous about Dakin doing well (though I had been assured that if he hated it we were certainly allowed to leave if needs be), since he had more or less hated almost everything thus far.  I'll let you be the judge:

He LOVED the show.  It was a puppet-type set up with a stage, so that is why I am guessing he did so well--he is used to stages set-ups, evidently.  Honestly, if nothing else had gone right on this trip, his reaction to the show would have made up for everything.  I spent the majority of the 20-ish minutes trying to capture his smile. 

We spent the rest of that afternoon walking around the park, even getting pictures with Lightning McQueen and Mater, which I haven't gotten yet because I am not sure I want to pay Disney a kajillion more dollars.  Anyhoo...

That evening we had a special date...more on that later.  Day 6 I more or less already went over (the beach), so our next entry will be the BEST DAY EVER.  Stay tuned--you won't want to miss this.  

Disney 2011--Days 3 and 4!

So when I left you last, we were pretty much up a creek without a paddle with our battery broken.  I called our DME here in Texas and they sent something overnight, which of course should have been at our hotel by Tuesday.  Oh no.  It came Wednesday.  Sigh.  Anyhoo, in a bout of boredom and itch to get out of the hotel room, it occurred to me that we could rig something to make the battery work.  So I send Daddy out to Walmart to get some stuff, and a couple of trips later, we had rigged an AC adapter to the battery ports and plugged it in to a portable something or rather.  We had no idea how long it would last, but we walked down to Downtown Disney to give it a shot.  It worked like a charm! 

Downtown Disney was awesome, except for when we tried to go to Rainforest Cafe for lunch.  BIG mistake.  Dakin was terrified of the artificial rainstorm and the animatronic monkeys.  Like, staring-in-abject-terror-at-them fear.  Not good.  So we took our food outside and continued to look around. 

I forgot to mention the other day the other thing we did to entertain ourselves during batterygate.  We took Dakin down the the pools...there is a little kiddie one, a round one that is all of 1.5 feet deep.  He LOVED it.  He called it the whirlpool (which really comes out more like 'woo-poo', a whole other source of amusement in itself).  The best part for him was splashing Daddy, who was only slightly exaggerating his fussing at being wet for the amusment of the little one; he REALLY hates being wet.  We got to go twice while we were in Florida--I wish we had one here.   

We waited in vain for the piece we needed to come on Tuesday, and about noon we sent Daddy out to Walmart one more time for the car battery charger.  We charged it for a few hours, which was good because hell or high water, we were going out Tuesday night--to Mickey's Not-So-Scary Halloween Party.  We dressed Dakin in his King Pig (Angry Birds) shirt and took him over.  I would have taken more pics, but we got lost from Nana for a while and it got dark pretty quickly. 

This being Dakin's first time in the Magic Kingdom, I was pretty excited to show him everything.  We got in, bought a balloon (yellow Mickey head inside a clear round one) and headed to Pirates of the Caribbean.  We thought it might be a good starter ride.

Can you guess what happened?  Oh yes, Dakin hated it. 

Haha....so, so much for rides.  We decided to just walk around and enjoy what we could find.  We ended up at the Haunted Mansion (which is my favorite ride) and since there were no lines, Nana, Daddy and Dakin stayed at a table and watched people while I rode it.  We did walk by 'Philharmagic' and figured if Dakin hated it we could leave in the middle--and shockingly, he loved it!  It's a 3-D show with Disney music and starring Donald Duck--Dakin is a Donald fan, so we thought we would try it.  He refused to wear the 3-D glasses but loved the show.  Hooray!  Not a total bust!  We did, however, realize we left our balloon there later...

We ended up at a restaurant in Fantasyland and ate dinner, then continued on to Tomorrowland where I got to ride Space Mountain (LOVED the no line thing!!!!). 

At that point there were maybe, oh, 86 thousand people in the park and it was getting crazy crowded, so we decided to head home.  On the way out we bought another Mickey head balloon--this one was cooler, with changing lights inside.  It sounds strange, but it had been my goal to buy him one of those..

It turns out we left just in time.  I had wanted him to see the fireworks, but they started as we were leaving and the loud would have scared him.  So yeah.  The party was great but incredibly crowded.  The rigged battery performed perfectly.  Yes, yes, I am a genius.

 On the way out we stopped at the confectionery and Daddy got this caramel apple...Jack Skellington!  Cool, right? 

Disney 2011--Days 1 and 2

OK.  So starting from the beginning.  We decided to fly to Florida instead of driving (2.5 hrs vs. 19 hrs....no brainer.).  I spent a considerable amount of time planning, calling people, and worrying about getting Dakin, his vent and all his stuff on that plane.  Turns out, going through TSA and flying was one of the smoothest parts of the entire trip!  TSA was very accomodating and gentle with Dakin, and made sure all our things got to where they should have gone.  American Airlines (at least on the way out) was the same way.  I had oxygen set up to be on the safe side--to be honest I was expecting major desaturations and emergency landings in Mobile, AL...haha.    It went perfectly though--Dakin didn't even seem to notice the pressure difference.  So much so I didn't even bother checking his oxygen levels during the flight. 

Here we are waiting at the airport...Dakin was very excited.  He kept saying we were going to be in 'The Great Sky Race' (a Little Einsteins reference) and was happy watching out the window. 

Like I said, the flight went great.  He ended up sitting on my lap because his carseat wouldn't fit his legs--they are too long for the little spaces between those seats.  He didn't even flip out at being up so high, and we kept telling him the pilot's voice was Rocket (again, Little Einsteins).  He thought that was funny.  We got to Orlando in one piece and drove over to the hotel, where we chilled out the rest of the day. 

The next morning we had a character breakfast scheduled--Dakin didn't know what it was (we had told him he had a big big big big surprise waiting when he woke up, and that morning he woke up saying 'big big big surprise'--he was pretty excited).  We went over to the Contemporary Resort and sat down, waiting for the characters to come.  (Wow...I am fantasizing now about those Mickey waffles with whipped butter....yummmmmmm)



This is Dakin very excited about the surprise...

 He had, at this point, spotted the characters, but they weren't nearby. 

 This was right after one of them came over--he was still a little excited, I think...love this face. 

And from here you can see the disenchantment progress...

So yeah...characters were a no.  I have heard this isn't highly unusual, so I don't feel too badly about it.  Daddy and I thoroughly enjoyed ourselves (and those Mickey waffles...)

And then chaos ensued...a crucial piece in his battery BROKE.  I mean really...we take that battery EVERYWHERE, and the day we are 2000 miles from home, it breaks.  Of course, it was the one thing I didn't plan for, because I didn't think I needed to...sigh.  So we were stuck in the hotel room most of the rest of the day.  But Dakin didn't mind--he loved looking out the window!  That was one of his favorite things, actually. 

We did venture out to the Italian restaurant downstairs--our ventilator has an internal battery life of an hour, so dinner was ok to do out.  We were the only customers, and the staff seemed taken with Dakin (and who isn't, really?) and they gave him this Mickey.  

So...Days one and two!  Stay tuned for how we kind of solved our battery issue (I am a genius) and the BEST DAY EVER.

Disney 2011--The Beach!

Sooooo...we went to Florida.

Yep!  We went all the way from Texas to sunny Florida.  By plane, even.  That is a whole other story--but until I can get to all of it I wanted to give you a sneak peek: the day we went to the beach!  We drove over to Cocoa Beach from Orlando to give Dakin his first taste of surf and sand.

Our sandcastle!

Cocoa Beach!

Dakin and Mommy chillin' in the sand.

 Dakin really enjoyed the beach...we dug in the sand with his shovel (he had originally told me he wanted to 'build a sandcastle.  Mommy no help Dakin', but I ended up building it anyhow, of course...) and then with his foot.  We took him down to the waterline, where I had hoped to sit with him in the surf, but the water was pretty chilly, so we stuck his feet in the ocean.  The first time the wave came up and he had his feet in, he loved it.  So we took him a little deeper...he didn't like that so much.  But at least we can say he got to put his feet in the ocean.  Which is a pretty amazing feat for a ventilator-dependent child from Texas.  :) 

I had planned pretty extensively for the beach trip, but I of course did not think of how very, very magnetic that sand is!  I spent part of the time worrying he was going to get it in his stoma (the hole in his neck where his trach goes), the PEEP valve on his vent or in the vent itself.  Super fun, that was.  But it all turned out well and he really enjoyed himself.  Except for the gulls...he hates birds.

 After the beach we headed to a restaurant we had heard about from one of the bellhops at the hotel.  It was right (I mean, like, over) the water.  We got a table outside and enjoyed the sunset and fed the fish with the beyond-amazing corn fritters they served us.  That quit when the birds showed up for their share (again, the bird phobia reared its head.  Don't ask.  I don't know).  But this restaurant was awesome.  The fish even come when you knock on the pier...I have never seen fish respond to calling before.  It was wild. 

See how beautiful??  I love this pic!

The beach was amazing, and definitely a dream come true.  It was very important to me that he set foot in the ocean...I don't know why, but it was.  I am glad he got to.  It was really a perfect day!  More to come on our amazing trip!

Strolling for SMARD

I have been so insanely busy that I have neglected one little thing I needed to do--talk about our walk!!  Strolling for SMARD was held on Sept. 24th at White Oak High School Stadium.  We didn't have quite the turnout I was hoping for, but we surpassed our $5K goal--that is five thousand dollars closer to finding a cure for Dakin.  It was a warm morning, and I got sunburned, but I went home happy and hopeful.  I have pics to share, and will soon. 

I did want to talk about our sponsors, though.  We had a ton of amazing sponsors--so many that I had a hard time fitting them on our thank you page we handed out.  The businesses in East Texas rallied around our cause, and I feel like we need to call attention to them .  So here we go. Part one:

Sante Pediatric Services: This is Dakin's Speech Therapy company, but they do all kinds of therapy all over North and East Texas.  Their motto is "Where kids come first"--and they truly mean it.

CPS Medical:  Has been our medical supply company since Dakin got out of the hospital.  They have always worked hard to meet his needs and treated us with integrity. 

Exceptional Home Care: Dakin's nursing agency, also since we got out of the hospital.  We have amazing nurses because of them.

Patterson Nissan: My husband's employer.  They too have never treated us with anything but respect, compassion, and integrity.  If you need a car, head over there.

Shadow Box Resale and Consignment:  An amazing business in White Oak.  Every time I go in there I find something I need.  Shadow Box deals in high quality consignments, as well as Scentsy, Pampered Chef and Passion Parties.

Snap Fitness White Oak: My gym!  They are open 24 hours a day, and offer Zumba classes as well.  A great community place to work out!

Caps and Tees:  Our t-shirt company that not only cut us an amazing deal, they made AMAZING shirts.  They were a pleasure to work with!!

The Mud Hut:  A paint-your-own-pottery place in Longview that we LOVE to go to.  The staff are warm and amazing with Dakin, and they have storytime and special events. 

White Oak State Bank: A local bank owned and operated right here in the White Oak area!

Reefer Pro Plus:  This company in Daingerfield deals in refrigeration unit repairs. Brandy is a friend we met at the Mud Hut!

1-800-Radiator:  They deal in AC and parts, as well as radiator parts.  They also work with car companies.  The owner is amazingly nice!

Sissy's Avon & Island Tans:  Right next door to 1-800-Radiator--the owner is married to the owner of 1-800-Radiator.  Sweet, sweet couple and great people.  Tanning packages and Avon sales!

Moe's Pizza: It has become a tradition for us that every Christmas we get Moe's.  They are always open!  They also have awesome pizza and did us the amazing service of putting flyers on pizza boxes.

Life Behind My Lens: Photography by Romonia:  Romonia donated three very large photography packages to our silent auction, and my mother in law won me one.  I am SO excited--you need to check out her photography.  Beautiful!!

Brookshires: Our local Brookshire's in White Oak, who donated a gift card that covered our water needs for the event!

OK, that's all for tonight, but tune in soon for the rest of the sponsors, and a little message from Dakin!

Birthday Party--Angry Birds Style

We had originally planned to do a Cars theme for Dakin's birthday, but upon observing his undying and passionate devotion to Angry Birds, we knew it was the only way to go.  There isn't a whole lot of Angry Birds themed stuff just yet, so we had to improvise:  behold, Angry Birds cookie pops!

Pig goody bags...

Angry Birds game.  Found this on a website, and it would have gone much more smoothly but for some reason the wind decided it had to blow as hard as it could on October 8th.  Sooooo, we had to modify.  One of the dads held the pigs up on the boxes and let the kids 'knock' them down with the birds.

We had pig cupcakes, but they didn't make it on here because they were horrible looking...haha.  It was a good party, and Dakin would have enjoyed it more had that cursed wind not been up to its tricks (he never learned to breathe in wind, and so it scares him.  He spent the first half of the party in tears because I was too dumb to think to put him on a breathing rate.  Once I thought to he chilled out.) 

Dakin got a playable Angry Birds game, a hat, a lovely painting, a handmade set of Angry Birds, a few stuffed Birds, a book, a Moon in My Room and a few cards.  The party was a lot of fun (even for Dakin finally...).  I love doing parties for him, and I love seeing how the kids are all so great with him.  He has grown up with this set of kiddos and so they all treat him like any other kiddo.  We are lucky to have such a great group of kids for Dakin to be around.

If I never have to make any other Angry Birds-themed things ever again it will be too freaking soon.