The Daily Dakin

Dakinisms

2012-01-22T07:13:00.000-08:00

In the last 6 months or so, Dakin has REALLY caught up on his speech. He is more or less exactly where he should be now, and it is so fun to hear him articulate his thoughts. Here are some of the gems of late:

(Playing with rubber bands, he had them stretched and said they were swimming.) I said, "It's swimming?" He said, "Rubber bands don't swim!"

(With his nurse, watching videos on the iPad. One of them doesn't want to load) J: "I don't think it's loading, baby." Dakin, pointing to circular thing on the iPad that runs when it's thinking, "See that thing? That thing means it's LOADING." (evidently said in a tone that made Jane feel stupid...he has quite a bit of attitude).

Me, checking diaper: "I think you're wet." Dakin: "I think I'm don't."

Dakin: "Don't tickle me. I like kisses better."

And the best one: "Mommy, I love you a lot." Me: "I love you a lot too." D: "I love you one more."

He has also recently threatened to put me in time out for saying the word crazy, and on December 26, he said "I love you" spontaneously to me for the first time...it was awesome. Now I get to hear it all the time!

Trash for a Cure Fundraiser!

2012-01-07T17:45:00.000-08:00

HI! It's been a while, I know...but one of my New Year's Resolutions is to be better with blogging. And so here is the first attempt at keeping that promise. So....without further ado...

TRASH FOR A CURE.

What is this, you ask? Only the easiest and most perfect fundraiser EVER. See, there is an awesome company called TerraCycle that will take hard-to-recyclables and upcycle or recycle them: things like Malt-O-Meal cereal bags, etc. And they will GIVE YOU MONEY for said items. .01-.02 cents per item to the charity of your choice. They even pay the shipping so you can get the items to them. This is a win-win all around! Money for charity, they get stuff for their products, and the earth doesn't have to take a bag that will NEVER.EVER.ROT.

This project makes my heart sing!

SO: Trash for a Cure. We are going to gather hard-to-recycle items to send to TerraCycle to raise money for SMARD research at the Jackson Laboratory. Now, 2 cents may not seem like much, but if we can make this big, it can make a real difference in finding a cure for Dakin.

Anyone can help, anywhere in the country! Are you interested? Here's how!

1. You can choose an item group to gather (talk to friends, host a drive through a church or scout or any kind of other group), get a bunch of it, and send it in to TerraCycle through our group account (again, TerraCycle pays shipping, so this is free!!)

2. If you are local to the East Texas area, you can choose to gather or host a drive for all of these items and give them to me and I will ship them!

If you are interested in organizing a drive, I will have flyers available early next week--just let me know!

SO WHAT KIND OF ITEMS CAN WE GATHER?

You can choose any one or more of the following, or all of them if you are local to the East Texas area!

1. Candy wrappers: individual candy wrappers, large candy bags, and multi-pack candy bags.

2. Cereal bags: Malt-O-Meal, Three Sisters, Bear River Valley, Isabel's Way, Sally's brand cereal bags, and any other bagged cereal.

3. Oral care items: toothpaste tubes, toothpaste caps, tooth brushes, floss containers.

4. Drink pouches: aluminum drink pouches, plastic drink pouches.

5. Personal care and beauty items: lipstick cases, mascara tubes, eye shadow cases, shampoo bottles, conditioner bottles, bronzer cases, foundation packaging, body wash containers, soap tubes, soap dispensers, lotion dispensers, saving foam tubes, powder cases, lotion bottles, chapstick tubes, lotion tubes, face soap dispensers, face soap tubes, face lotion bottles, face lotion jars, eyeliner cases, eyeliner pencils, eyeshadow tubes, concealer tubes, concealer sticks, lipliner pencils, hand lotion tubes, hair gel tubes, hair paste jars.

So, as you can see, there is a TON of stuff from which you can choose to collect if you are out of town, or all of them in the East Texas area. And remember, all the proceeds from this fundraiser will go to SMARD research at the Jackson Laboratory. Trash for a Cure is an easy, eco-friendly and fun way to cure SMARD! I hope you will join us as we help collect Trash for a Cure!

Any questions: email poundoutsma@gmail.com

Jingle Bell

2011-12-25T18:52:00.000-08:00

Hope everyone had a wonderful Christmas!

Tree Farm

2011-12-15T18:41:00.000-08:00

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 absolutley 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

2011-12-06T19:49:00.000-08:00

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

2011-12-02T19:18:00.000-08:00

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

2011-11-21T19:09:00.000-08:00

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

2011-11-15T17:40:00.000-08:00

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!

2011-11-06T20:10:00.000-08:00

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

2011-11-04T17:56:00.000-07:00

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!

2011-11-03T19:05:00.000-07:00

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

2011-10-18T19:29:00.000-07:00

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

2011-10-16T19:48:00.000-07:00

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.

Big Changes!

2011-10-12T19:54:00.000-07:00

Ok, so I know it has been like a month since I blogged last, and I apologize. I have been insane crazy busy, first with our fundraiser--which was a success! Will tell more later--and some other really fun things that are coming up. But tonight I wanted to talk about the big new thing for Dakin: behold the Big Boy Room.

Sigh. Big Boy wall. All Angry Birds and Imagination Movers. Where did my baby go?? And here is the long, long awaited Big Boy Bed--thanks to a good friend of mine who finally stepped in and took care of the fact he was WAY too big for his bed. It is a loft bed, so quite high (perfect for us--so we don't have to hunch over to suction him). She will be installing a drop down side too--she is an awesome woodworker.

Dakin LOVES his new bed. LOVES. So thank you to our sweet friend who helped us with it!!

And Another Random One

2011-09-19T21:09:00.000-07:00

Another post that is more just for me than anyone else...we will continue with regular blogging tomorrow when I update on our walk!

Dakin is sick tonight...or so it appears. He started with a really runny nose yesterday that escalated into a fever today. The fever has not come back though...so I am hoping it will be a mild one, especially considering everything going on this week with Strolling with SMARD. He is resting peacefully at the moment, thank heaven, as I do not have a nurse tonight either.

Yesterday and today have been wonderful. Dakin was so clingy yesterday (prelude to a cold?) and I got to snuggle with him a lot during church. He was so good in church- he led the line from Sunday School into Primary with all the little boys following him in his powerchair. It was so sweet.

He pays so much attention in church. He was listening to the story the teacher was telling and commenting on it to me. When we got home he was singing the song they learned. He is just a sponge.

He was so excited today when his Speech Therapist brought him an early birthday present of Angry Birds stuff...he wanted to talk to the pig sticker I had on my finger. 'Pig sticker talk to Dakin!' Adorable.

Last thing I want to mention is his new best friend: a Wonder Red doll (from Super Why). He LOVES Wonder Red, and this is the first time he has really attached to a stuffed toy. He insists that I hold her in my hand so he can show her stuff...him playing Angry Birds, the FlexSeal commercial on the TV (he likes old people commercials...haha). I can't sit her up so she can see....oh no, even when it is physically impossible I am supposed to hold her. It'sneat to watch how he tries to interact with her.

Ok, enough for tonight. Thank you for indulging me. :)

Birthday Invitations

2011-09-12T20:33:00.000-07:00

Behold...Dakin's birthday invitations...I am going to pat myself on the back here...they are ball pit balls I painted with paint markers and wrote the party info on the back. I wanted to make the pigs look a little rough...cuz they kinda do in the game, you know? :)

Special Visitor and AOA #8 and #16

2011-09-07T19:33:00.000-07:00

Last weekend we had a visitor! Dakin's aunt Carrie came to see us all the way from Denver.

It was awesome having Carrie here! She is a lot of fun and is great with Dakin--the tubes and paraphernalia don't bother her at all. So we took advantage of the slightly cooler weather and accomplished some Autumn Of Awesome items: Going to Tiger Creek and Making Chocolate Chip Pumpkin Bread!

Tiger Creek was good--though they have expanded a TON in the last 18 months so the tour was a lot longer than before and we cut it short because the small one was getting warm.

And the Pumpkin Bread: Dakin refused to sit up in his chair to help us bake this, so we did it on the floor. Why not?

We had a wonderful weekend with Carrie here! She and Dakin got to play a lot--he was, after all, the reason she came. He spent the entire weekend saying "Aunt Carrie! Aunt Carrie!" to draw her attention to any little thing or just to 'ping' her, as he is wont to do with aunts. We love you very much, Carrie, and hope you come back soon!!

AOA #72: The Marshmallow Gun

2011-08-31T19:49:00.000-07:00

So when I saw this post on The Idea Room, I just knew we had to make Dakin his very own marshmallow gun. So we did! It was crazy easy (especially when you use your feminine charms to get the guy at the hardware store to cut the PVC pipe for you...) It took all of ten seconds to assemble and has provided hours of fun so far!

Target #1: Blocks. Not a good idea. The marshmallows just don't have that kind of velocity.

Target #2: Stacked cups. Much better idea, if you can get them to stay up despite two fans blowing in the house (yes, it's still 106 degrees here). But look at his grin! He loves it!

So, first Autumn of Awesome item accomplished, and the verdict: awesome, of course. You just have to be careful not to inhale the marshmallow...

Autumn of Awesome

2011-08-25T20:01:00.000-07:00

OK. Perhaps it is because I have been trapped in my house for the last three months (it.is.so.hot....) but I am dead ready for fall. Always my favorite season, fall around here signals a return to sanity in weather- temperatures that humans can actually survive in, golden rays of sunshine instead of the brazen blasting hot yellow of summer. And a lot more fun things to do. So I made a list. Of course. I love lists.

Anyhoo, my list is the 100 things I want to do with Dakin before the year is up, so strictly speaking it will be the Autumn and Early Winter of Awesome. Autumn of Awesome works better. A lot of the things on the list are things we do every year anyway, but some are new. Some of them I won't be specific about because it's never a good idea to put where you are going on the Internet, right? So...all of these will be a blog post as well, so I can catalog the memories.

Without further ado: the Autumn of Awesome list:

1.Collect rocks in a basket (sounds strange, but I found it on a parenting website or something...haha
2. Thing I can't be specific about, but it will be good. You'll see.
3. Do something nice for someone.
4. Do an advent calendar.
5. Make black cat cookies (yum!!)
6. Make a gingerbread house.
7. Enjoy Thanksgiving
8. Go to Tiger Creek
9. Go Halloween shopping
10. Do something amazing
11. Do something breathtaking
12. Go to the Dallas aquarium
13. Go to the Dallas Butterfly House
14. Go to the Pumpkin Patch at the Dallas Arboretum
15. Carve a pumpkin
16. Make chocolate pumpkin bread (if you haven't had it, make it. Ah-maz-ing!!)
17. Decorate for Halloween
18. Decorate for Christmas
19. Go to Santaland
20. Get Santa pics done, preferably without tears this year
21. Make a Halloween craft
22. Make a Thanksgiving tree
23. Make a Christmas craft
24. Make tummies
25. Make and get Dakin to acquiesce to enter a table fort
26. Look at the stars
27. Play in the snow
28. Drive around and look at Christmas lights
29. Go trick or treating
30. Awesome awesome thing #2...a party. Specifics later.
31. Awesome thing #3...a wet and wild experience
32. Make play dough
33. Go Christmas shopping
34. Collect autumn leaves
35. Make gingerbread people
36. Make cookies for Santa
37. Make treats for his reindeer
38. Make Christmas gifts
39. Go to the zoo
40. Go to Cherokee Trace drive through safari
41. Awesome #4: new friend
42. Awesome #5: construction project
43. Awesome #6: might or might not work
44. Awesome #7: treasure hunt
45. Awesome #8: important purchase
46. Make ice cream
47. Have a birthday party
48. Play instruments
49. See a movie
50. Kick fallen leaves
51. Press autumn leaves
52. Read our Halloween books
53. Read our Christmas books
54. Make salt dough ornaments
55. Awesome #9: sneaky and secret
56. Awesome #10: sneaky and secret #2
57. Make a tree journal
58. Make a 'collection'. Dakin seemed interested in the collection one of the dinosaurs on 'Dinosaur Train' had. So I thought we could start one for him.
59. Make giant bubbles
60. Blow bubbles outside
61. Make Challah bread
62. Have a Hannukkah dinner
63. Feed ducks
64. Make shaving cream tub paints
65. Make sparkly snowflakes
66. Have Movie Friday
67. Successfully make a homemade bouncy ball
68. Make magnetic silly putty
69. Grow beans in a CD case
70. Make stars in jars
71. Build a rocket
72. Make a marshmallow gun
73. Make toothpick buildings
74. Make pumpkin spice play dough
75. Celebrate Guy Fawkes day
76. Fill bedroom with balloons on Dakin's birthday
77. Watch the Great Pumpkin
78. Watch the Charlie Brown Christmas show
79. Watch at least one Halloweentown movie. He wasn't biting last year...
80. Make a Christmas Child box
81. Go to the park
82. Go to story time at the Mud Hut
83. Slide down the slide at the park
84. Go to story time
85. Dress up for Halloween
86. Awesome #10: meet a big new friend
87. Have an awesome birthday cake (oh, and it will be awesome)
88. Have Christmas dinner
89. Lie outside on blanket at look at clouds. Provided the small one agrees.
90. Do leaf rubbings
91. Go to a craft show
92. Make wassail
93. Make gifts for Dakin's doctors
94. Awesome #11: a moving experience
95. Make gingerbread play dough
96. See friends
97. See family
98. Raise money for SMARD
99. Open presents on Christmas
100.Decorate Christmas tree

Ok, that's all of them! I am looking forward to an amazing end of the year. Now if I could just get it to cool off so we could go outside...

Strolling For SMARD

2011-08-18T18:46:00.000-07:00

So this has been going on for about 2 weeks now, but I haven't mentioned it here. You have read about our newfound Jackson Laboratory friends, and we are now planning a fundraiser to help them expand their research into SMARD.

Strolling for SMARD will be held September 24th at 10 am at the White Oak High School track. We will walk a mile around the track, then enjoy a silent auction, raffle and games for the kids.

Our goal is to reach $5000 that we can contribute toward Dr. Cox's SMARD research at the lab. All funds raised will go directly to the lab, and donations are tax deductible.

We have already gotten a number of local sponsors, and will be highlighting them soon. Please come join us for what we hope will be a nice fall morning. Admission is 10.00 a person, with kids ten and under free. T-shirts are available for 9.00, with 100% of admission and t-shirt prices going to the lab--straight to SMARD research.

If you are out of the area but would still like to help, please consider a tax-deductible donation directly to the lab. You can find our Strolling for SMARD page here.

Please help us find a cure. Your generosity could help my little boy walk or snorkel or dance at prom one day. Thank you!!!

Conversations With Dakin: Honey Edition

2011-08-11T19:30:00.000-07:00

Speech Therapist: Dakin, what are those? (showing him picture of bees)
Dakin: Bees.
ST: And where do they live?
Dakin: Honey store.

Well of course. Doesn't that make sense?

More random Dakinisms:

In the van the other day: Dakin in his chair, nurse behind him, me having run into the restaurant we were parked at. Dakin heard a truck go by and said, "big, loud, red, stupid truck." Then he caught himself and kind of looked back a little to see if Jane was going to do anything about the fact he said stupid. He then amended his statement to "big, loud, red truck.". Ha!

In the kitchen the other day being bugged by a fly: "he's everywhere!"

His other new favorite thing to say is "Mommy say yes." Even if I haven't said yes, he will say I said yes to whatever it is he wants to do. It's pretty cute.

Miracles

2011-08-08T19:04:00.000-07:00

They do happen!

We got some amazing news today. We, as a little tiny SMARD community, have raised just about 50,000 dollars!!! And, as a result, the Jackson Laboratory has assigned a post doc researcher to work exclusively on SMARD. They also said if we keep raising cash like this, Dr. Cox may be able to make the whole of his lab's research SMARD. Can you believe it?! We have come so so far...from no hope at all to having a person researching SMARD full time!

Wow.

I am pretty humbled about this, and my heart is really full. I don't know what to say- how do you thank people who are trying to save your child's life? What words are sufficient to properly express a gratitude I can't even sense the depth of? How do I thank the anonymous donor who gave this research $25,000? How can I tell Gus, who hiked his rear off in July and raised almost 6500 dollars how much his sacrifice and love for Dakin and his buddies means to me? The people at the lab who have made our cause their own...and thus have sealed themselves to my heart forever- how do I thank them? And the friends and sweet people who have donated...I just hope that all these people know how grateful I am.

Hope is one of the greatest gifts in the world, so thank you so much to those who have helped restore some to me. Know that you are in my heart and will be always. This is my baby we are talking about. You will never know how grateful I am.

Sigh, as usual, words fail me.

But we need to keep this momentum going. In the next few days I will be announcing my personal fundraiser. Let's keep it going!

New Truck!

2011-08-03T19:43:00.000-07:00

So we have this friend. This awesome, awesome friend. His name is Dan, and he is an engineer. We met Dan last year when we had contacted LeTourneau University about helping us modify toys that Dakin could actually use. Dan took the problem and ran with it...creating a truck for Dakin that he absolutely loved. Dan graduated from school and went to work. But he hasn't forgotten about Dakin. A week or so ago we got a call from Dan, saying he would be in town and had a new truck for Dakin. So he stopped by, we had a nice visit, and this is what he brought:

You know what this is? I will tell you what it looks like--it looks like one of those awesome flip RC cars. And that is what it is on the outside. But with the simple, genius addition of a piece of PVC pipe, it becomes a world of opportunity for a little boy who can't play with the regular toy. See how much he is enjoying it in the video? Amazing. That smile is worth the world to me.

Dan had just seen the truck in the store and thought he could modify it for Dakin. You see, Dan is one of those truly kind and thoughtful people. It touches me so much to know he is using his God-given talent for engineering to help Dakin have a toy--something so simple and that so many take for granted. Dan, I can't say how grateful we are to you--for your thoughtfulness and your giving nature, for your talent and concern for my sweet little one.

And if we ever get a house with more rooms, you have a standing invitation. At the very least, dinner. :)

Awesome

2011-07-26T18:54:00.000-07:00

You know what I did today?

I played chase with my son, in his powerchair. He finally got the speed adjusted to normal person walking speed, and he chased me around the church gymnasium with the biggest smile on his face. He went through the partition separating the gym from the chapel, and back again. He drove it for an hour. But his favorite part was the chasing-I could tell.

It was amazing. We got to be just like everyone else.

I also have to add this: yesterday Dakin was sitting in my lap while watching Mickey Mouse Clubhouse. As the opening credits played, he said, "Clubhouse so bootiful. Like Mommy bootiful."

Smiles...

Wow/Climb for Silas Update

2011-07-23T19:45:00.001-07:00

OK, so I have been very, very remiss in posting on here. And it's not because nothing has been going on. The lack of posting's cause and effect is as follows: It became summer in East Texas, which led to 100-115 degree temperatures, which led to being trapped inside which led to slowly going insane which led to a serious case of cabin fever which led to a sudden and unexpected addiction to Pinterest which has stolen all of my evening blogging time. So blame the heat or blame Pinterest, just don't blame me. :)

Anyhoo, I did want to update you all on the Climb for Silas. Ten year old Gus has been hard at work this month, climbing mountains to raise money to cure SMARD. He has raised, so far, 1557.78 to go towards curing Dakin. Fifteen hundred dollars. Amazing. His goal is 50,000, and he is determined to raise it, ready to hike again next year to do it.

He has one more week to go this year. If you would like to donate, please do at http://www.facebook.com/l.php?u=http%3A%2F%2Fgenetichealth.jax.org%2Fclimb-for-silas.html&h=6AQAbUlG7 .

Here is a pic of Gus, his amazing mother Renee, Dr. Greg Cox and his family, and the photographer's sweet daughter. It is humbling beyond words to see the dedication of people-WHO WE HAVE NEVER MET!!!!-in curing this awful disease. It warms my heart and touches me very very deeply to know there are people who care so much about Dakin-about giving him a chance at a life unencumbered by a ventilator or wheelchair. I can't thank them enough and will never be able to. But if you want to help, please donate. It means more than I can say.

Vent Clinic

2011-07-16T18:58:00.000-07:00

Again.

So, like we always do, we packed up and headed out at 7 ish to drive our two and a half hours to Dallas. After checking in and on our way out of the parking lot I managed to back into a car. Yay me. So Dakin entertained himself by watching Little Einsteins on the iPad and the nurse by playing on her iPhone while I waited for the police. Yay fun. That was fortunately over quickly and we got to the fun stuff..

The aquarium!!!

We thought that since it is like the temperature of the sun outside that the aquarium might be a good visit again. And it was. There were a million kids the with various groups, but the leaders were all very considerate of Dakin and made the kids move so he could see in the stingray petting tank. And when they cleared out, magic happened. We hiked him up, stuck his little hand in the water and he got to touch them too. He loved it and kept saying "more!" every time we talked about it after. He also enjoyed looking in the shark tank.

Back to vent clinic, where Dakin knew he was getting blood drawn and therefore had a freakout fest. But other than that, all looked good- well, other than the fact his pulmonologist told me his scoliosis is getting worse....well, sir, tell me something I don't already know.

It all went well and we got out super early. Yay and we will be back in October.

One thing did strike me though...something that underscores our new normal. This is how the conversation went:
Dr. G (pulm): so, any bleeding from the trach?
Me: yeah, a little, but we were out of town for a weekend.
G: treat it with antibiotics?
Me: nah, it was only because he was on an HME and it cleared right up.
G: Ok.

So here I am, talking about the fact that my son's LUNGS WERE BLEEDING like it was nothing. Like we were talking about the weather. And he was totally fine with how we handled it.

So yeah. This shows a few things: one, how casual this stuff has become for me. And two: how much our docs trust me. Which is wonderful. But still weird.

Our Stop in Arkansas

2011-07-12T17:49:00.000-07:00

On our little jaunt to Missouri the other weekend, we also had the amazing opportunity to meet up with some friends in Arkansas. Friends I have never met...yep, another mom from my Pumpkin Patch friends. Jaynée, her husband Aaron and their sweet daughter Quinlyn met us at Chili's for dinner right outside of Little Rock.

We had so.much.fun. They are amazing company, and we had a blast chatting. Quinlyn was trying desperately to get Dakin to pay attention to her, but he was not taking the bait...I don't know why, as she is not only smart but beautiful...the total package. :)

I was so happy to have finally met this wonderful family. As I have said before, these mommas have been more than friends to me-they are family, and I was so glad to get to hug another member of that family. Can't wait to see them again!

Trip of a Lifetime

2011-07-09T19:10:00.000-07:00

Last weekend we had an unbelievable opportunity to go see my grandmother, who has never met Dakin. He is her only great-grandchild and she has been wanting to see him for a very long time.

So we met up in Sikeston, Missouri, near where I used to live up there. It was a very, very long 9 hour drive up, but Dakin did great, sitting up in his back brace pretty much the entire time. He also watched Cars about three times, but it kept him happy, so...yeah. He watched that movie probably about 15 times over the course of the weekend, but that is another story.

And here we are!! Dakin and Gramma.

Dakin and Aunt Beth.

We had a ton of fun that weekend, mostly sitting around in the hotel room and playing and talking. I hadn't seen my aunt or my grandmother for years, and it was wonderful to get to hug them both again. We also got to go to Lambert's Cafe, a funny place my husband and I always enjoyed going to when we lived there...they throw rolls at you. Amazing rolls...but again, another story. We waited an hour and 45 min to get in, but it is so so worth it, and to kill time we went down to the outlet mall. Dakin had a blast looking around the kitchen store and checking to make sure where Aunt Beth was every few minutes. (He pings people if he can't see them).

I am so glad Dakin finally got to meet Gramma. It was a trip well worth it to see her smile. It was also great to see how far we have come...a few years ago we never would have dreamed we could make a trip like that, especially without a nurse. But it went fabulously.

We love you, Gramma and Aunt Beth!

Here They Are!!

2011-07-07T18:17:00.001-07:00

Here are the beautiful and stunning portraits Azure took of Dakin!! I think these are inexpressibly beautiful photos, and I can not thank her enough for the time she took to come see us. It was a true privilege to have her photograph him. If you haven't yet, go check out her website. I love all her stuff (there is an absolutely breathtaking one of a woman in a scarf...amazing!!) and she is beyond talented! Her boudoir photography is gorgeous as well! I just can't pick a favorite from these...I love them all. **edited to add that my computer freaking hates me and I can't do a link to Azure's site, so check it out here: www.azuremarie.com)

Random Dakinisms

2011-06-27T18:21:00.000-07:00

Old McDonald had farm EIEIO and this farm he had a bedroom EIEIO with a mommy there mommy there color there color there Old McDonald had farm EIEO and this farm he had a blanket EIEIO with a lie down there lie down there Old McDonald had farm EIEIO and this farm he had a truck EIEIO with driving there driving there driving there old McDonald had farm EIEIO.

As you can see, Dakin has been really into songs lately. He learns them in a flash and likes to put his own little spin on them. Today's was "Puff the Magic Dragon."

The other night we were 'camping', which means we were in his room playing. I took the scarf that I had been using to play pirate off my head and hades it to Dakin. He gathered it around his little head and said, "Captain Dakin!"

That same night he said Big Dakin and I were 6 years old, his nurse Jane is 17 and his Speech Therapist is 18.

He is developing such a little personality. I love hearing what he is thinking!!

Story Time

2011-06-27T08:06:00.000-07:00

Are you all not very excited to have gathered here to hear Dakin's story? Well, the wait is over. Here is his story, as told me me this morning:

Once upon a time, a little truck beat Big Jet. Big truck dancing. Bucket of toys.

The End.

I Am Speed

2011-06-25T17:44:00.000-07:00

Today we did something we have never done before. We took Dakin to the movies! He absolutely loves Cars, so we thought Cars 2 might be a good first time foray into the world of big screen cinema. I was really nervous about it for a few reasons: 1. I was anticipating one bajillion people there, 2. Movie theaters are not known for being particularly clean places, and 3. Dakin does NOT do well with loud noise.

But we thought we'd give it a shot. We told him where we were going, and he said "I so excited!" And he did wonderfully! In fact, he was the best behaved child in the theater. He laughed his way through the movie with his little 'ha ha' and didn't even throw a fit at the little Pixar lamp, which he HATES on the Cars DVD. He spent about 20 minutes on Daddy's lap partway through, but we didn't need to suction and there was no fussing about lying down. After we ate at Olive Garden, where he even ate some of the breadsticks and my salad.

All in all a successful, 'normal' day. It was really nice. And I apologize for the quality of this picture...it was taken on my cell phone and it was dark in there, of course. But if you peer closely, you can make out his ginormous smile.

Hmmm

2011-06-20T19:55:00.000-07:00

Well, since summer has officially made its wilting presence known, we are playing hide inside. It is too freaking hot in this state. I love it here, love everything about it except for this time of year and the inevitable insects that come along with it. Sigh.

Anyhoo, on that note we haven't done too much lately, but have had a lot of changes. Probably the biggest one has been in Dakin's eating...you may remember that last time we went to vent clinic they said he hadn't gained enough weight, which I attributed to the fact spring had hit and he was all stuffed up and couldn't breathe all that well to eat also. Well, all that has changed and due to the boosting they told us to do (in the form of heavy cream in his yogurt, etc.)and the fact that he resumed eating normally, the pig-boy has gained three pounds in the last 2.5 months. For example. Yesterday, he ate thirty ounces of yogurt, an easy mac cup, 4 ounces of Carnation Instant Breakfast in his milk AND like 9 ounces of water. I don't know where he is putting it.

But with that increased eating we have started trying to branch out on the foods he eats. So today, we tried a quesadilla...he ate an entire quarter of it! Doesn't seem like much, but for a kid who they said might have to do inpatient feeding programs or (SHUDDER AND QUAKE) replace the nose feeding tube (OVER MY COLD, DEAD CORPSE), this is a big accomplishment. BOO YAH.

Let's see, what else? We finally got the right seating system for Dakin's powerchair...maybe he can actually use it now. And yesterday we found a big freaking hole in his trach. So we need a new one. Good times. I told you nothing was going on.

But, for your enjoyment, a picture. I took this in front of the garden I was helped plant, grow and was entrusted with when the owners went away. It's all big and overgrown now and partially dying in this hellish heat, but it produced enough okra, beans, tomatoes, freaking zucchini and pumpkins to feed a small ex-Soviet bloc country.

Climb For Silas

2011-06-15T18:01:00.000-07:00

You might be wondering who this handsome fella is. Well, his name is Gus, and he is amazing. His mother works for the Jackson Laboratory, the lab with whom we have been working to fund SMARD research. Upon hearing about Dakin's buddy Silas, Gus decided that he wanted to do something to help.

You see, Gus is a mountain climber. He loves it. And he is turning that passion into a cause...Climb for Silas. In the month of July, Gus will be climbing TWENTY FIVE mountains in Maine to raise money to help SMARD research at the Jackson Lab. Twenty five peaks he will summit to get us closer to a cure.

He went climbing the other day and took Dakin and Silas along, as you can see from the pics above (the last is Gus' pirate face for Dakin!). He had wanted to go the day before, but weather prevented a climb that day. This is what he emailed to Dakin:

Dear Dakin,
I could not bring you to the top of the mountain today because we got rained out.
But tomorrow we will be hiking another mountain called Norumbega Mountain. It has a very steep trail called Goat Trail and you get to see a few ponds. I will send you pictures tomorrow.
From Gus aka SMARD hiker

Gus is not just taking Dakin and Silas to the top of the mountain. His compassion and determination are taking us all there. With buddies like him, SMARD has no chance.

If you are interested in supporting Gus' Climb for Silas-Make SMARD Take a Hike, please let me know and I can put in you in contact with The Lab. 100% of all donations go to SMARD research at the Jackson Laboratory.

Brynlee

2011-06-10T19:31:00.001-07:00

If you are at all involved in the SMA world, you know sweet Brynlee passed away this week. Beautiful, vibrant Brynlee. Her journey was one of the first we began following when Dakin was first diagnosed with SMARD, almost three years ago. I remember watching videos of her sitting up and learning of all the neat things she was doing. She was just a little older than Dakin.

Instead of a funeral, Brynlee's parents will be holding a ball in her honor. I think that is a perfect, deeply touching tribute for a perfect, deeply touching princess of a girl.

I wish I had words to help erase the pain Brynlee's parents and family are feeling. I wish I had a window to whatever follows this life so I could show them and in some way ease the hurt. It is at times like this that I feel the most powerless against this form of disease...I wish that in hating it I could somehow make it stop its destruction. That it had some kind of soul so I could maybe somehow make it stop by pleading with it, or threatening it.

Despite what it does to the body, SMA never touched Brynlee's spirit. Of that I am certain.

Fly, sweet Brynlee. Hope to see you in the sky, butterfly.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love

Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this

Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me

Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light.

-Celine Dion, 'Fly'

Lately And Listening

2011-06-06T21:07:00.000-07:00

Yesterday was an interesting day. We took Dakin to church where he did great until the first part of the third hour...which is the childrens' meeting singing time. I had Dakin placed near the piano so I could see him, since I am the pianist (I use that term loosely). He started complaining that he needed to be suctioned, so I took him out. I didn't feel anything in his chest and took him back in. He kept fussing and fussing until I asked him if he wanted to go home, to which he said yes. So I take him out to the van and he started throwing a fit, saying he wanted to go back in. We walked him around the church for a bit and then headed home. I had told him he was going to get a surprise, but when he started asking I told him no since he was being so silly in church and of course a massive fit ensued. After about 15 minutes of fit, I caved and told him if he would calm down he could have his surprise. When he did I asked why he didn't want to be in primary. He said, "mad" and I asked why. He said "song loud."

Well now I feel like a big jerk. He wanted to be at church, he just didn't want to be in singing time because he doesn't like the noise.

Of course.

So, he got his surprise, a teal matchbox car. And now we need to figure out what to do with him during singing time.

On a side note, we haven't had a night nurse the last two nights and tonight I got to sing Dakin to sleep. He is so sweet...he fell asleep wth his little teal car in his hand last night. It is such a true and tremendous privilege to be his mommy. He is funny and tenderhearted and sweet and silly. He is talking so much now...telling me little stories about his cars and Big Jet. Last night he was telling me "look out car! Big van coming!"

Major Step Forward

2011-06-03T08:33:00.000-07:00

Yesterday I got some absolutely mind-blowing news. The Jackson Laboratory, with whom Lisa, Silas' mom, has been working so diligently to get SMARD research going, yesterday got an anonymous donation of TWENTY FIVE THOUSAND DOLLARS.

I will give you a second to pick your jaw up off the floor.

Yep, that's right. Twenty-five thousand dollars. Unbelievable.

So what does this mean? This is a serious jumpstart to the lab being able to hire a post doc to work exclusively on SMARD. It is twenty five thousand dollars closer to answers. Twenty five thousand dollars closer to getting rid of breathing machines and wheelchairs and suctioners. Twenty five thousand dollars closer to Dakin and his buddy Silas being able to meet and dig up worms and leave them in their pants pockets, and jump in the beauty of autumn leaves...

Twenty five thousand dollars closer to Presley and Maddison meeting up in Paris and getting hit on by French men, or taking a backpack tour of Europe...

Today, we are twenty five thousand dollars closer to hope.

So to our anonymous donor, whomever and wherever you might be, please please know how much your generosity means to me, to us as a community. Please know I will never forget it. There are not words sufficient to properly express how I feel for you adding to that little flame of hope. I wish to heaven I could repay you, but I hope this will do...

Dakin By The Numbers-Today

2011-05-28T18:05:00.000-07:00

330: miles we drove today.
9: hours Dakin stayed in his back brace with just a 15 minute break. (YEEE!!! This is HUGE!)
1.25: tanks of gas.
95: degrees it was outside.
0: times he had to be suctioned while we were gone.
0: number of times I dripped midnight truffle blizzard on my new white pants (win!)
2: hours we got to spend with a sweet sweet friend.
4: number of years I have known this sweet friend.
0: times I have met her in person, until now. You see, she is one of those amazing Pumpkin Patch women who have endeared themselves for life to me with their friendship.
At least 35: pictures she took of Dakin while doing our photo shoot.
Kajillion: where I am on a scale of one to ten excited to see the photos!
At least 30: number of times he made the pirate face while she was shooting.
1: week I wish I had to hang out with her more.
Six or seven million: number of times Dakin watched the Handy Manny race car episode to and from.
12.5: hours he stayed up without a nap.
995,345/995,345: my happiness level.

We had a wonderful time today with my friend, who is an amazing, amazing photographer. Her work is stunning, and I am thrilled she photographed Dakin. I am also overjoyed to meet another of the wonderful women who supported me so much during some of the darkest times of my life. It was a privilege to meet you on person finally, Azure, and hope we get to seen you again soon!

PS, you just have to check out her website. I am doing this on the iPad and so can't do hyperlinks because I don't speak HTML, but check her out, Awesome. www.azuremarie.com

We May Have a Problem

2011-05-26T19:09:00.000-07:00

Because Dakin is like any other child, I treat him as such. And of course, that includes time outs. Our time outs entail ceasing whatever we are doing and taking away all toys for three minutes. We don't put him in the corner-logistically that would be inconvenient and kind of counter productive- so we let him stay wherever he is. When the three minutes are over, we always discuss what happened, with me saying "ok, why were you in time out?" Dakin will answer why, say sorry and we go on with playing or whatever.

We had to do it a a lot a few months ago because he went through a little phase where he was hitting a lot. With consistency in time outs, we no longer have a problem with Dakin hitting. The time out had largely disappeared from our daily activity.

Until the last few days.

You see, Mommy has a problem with saying the word 'stupid', directed at everything in the house that happens to be acting obnoxiously- my phone, the iPad, the people on the television. Now, of course, the obvious exception to this is the people in the house. Only objects or people on the TV who are being stupid get called stupid. I am trying to stop saying it.

But little mynah bird boy has picked up on this and has started saying it. So re-enter the time out. Tonight he took great joy in saying stupid over and over, so of course he got stuck in time out. Thirty seconds into it I hear him say this: "OK, why in time out? Say stupid," obviously going over our post-time out ritual.

So...he is clearly on to my methodology. And while I am glad of that, I don't know how effective the time out was when he could tell I was laughing even though I was hiding my face.

Ah well.

Friends

2011-05-24T19:13:00.000-07:00

This last weekend Dakin and I had an adventure...we got to meet a good friend who I had never actually seen or talked to in person. Her name is Sara, and she is amazing.

I don't remember exactly how we met...I think she found this blog through another SMA family's site. What I do remember is how she immediately made herself known to us and grew to be a dear friend. She has been a staunch supporter of SMA and SMARD research, helping not only us but other families raise money. Sara is one of the most compassionate and giving people I have ever had the opportunity to call friend.

Getting to meet her, her husband and her sweet daughter was a privilege. And now that I know they are so close, I am going to make sure we spend more time with them.

I know I have mentioned this before, but in a situation like we have with Dakin you learn without a doubt who your true friends and family are. Sara is one of these. I am so lucky that she crossed my path. So so lucky to call her friend.

Yo Ho, Yo Ho

2011-05-20T19:24:00.000-07:00

This is Dakin's new pirate face. I have no idea where he got it from, or why he is doing it, but every time we ask him to smile now this is what we get. He thinks it's hilarious.
I absolutely love this picture. This is Dakin. One hundred percent Dakin. Even the marker all over his face. (We turned our backs for ten seconds...live and learn).

Battle Wound

2011-05-18T17:32:00.000-07:00

This, my friends, is Dakin's very first rug burn. You might wonder how a child with a very limiting neuromuscular disease acquired such an injury. I will tell you.

He was sitting on my lap and decided it would be fun to roll off it, on the floor, 'all the way over', as he says. He performed said trick maybe, oh, forty thousand times. And ended up with a rug burn.

Soooo...we learn two things from this. One: Dakin is just like every other boy in the world. He loves to roughhouse and play. And two: that limiting neuromuscular disease? I guess no one told him it was limiting.

Hope Will Find You

2011-05-11T20:02:00.000-07:00

We have already more or less announced this to the SMARD community, but I of course need to do so here. We have something pretty major going on. One of the SMARD moms, Lisa, has been tirelessly searching for doctors who are researching or who are willing to research SMARD. They are few and far between, and as you can imagine, with little funding.

But she found someone. Dr. Greg Cox at the Jackson Lab in Maine has been researching SMARD. And he is a year away from identifying the rescue gene...the gene that could help our kids. We are going to begin fundraising for the lab to help push that research forward.

We are a year away from finding the key.

Let me put this into perspective. For too long we went with little hope for a cure for Dakin...unaware of researchers, not having a community of our own to form any kind of base to affect research. We fundraised in the hopes that in curing another disease, ours might be helped as well, but not with any real hope.

All that changed in the last year or so. We now have a small community...small but strong. We have smart parents working hard to help our kids. We actually have a chance now. This could actually happen. We could actually cure SMARD.

As all this was coming to our attention yesterday, I went to the gym. 'The Talk' was on one of the TVs, and I watched through closed captioning the story of a rabbi whose daughter had been diagnosed with a devastating disease. She said that one night she and her daughter were in bed studying a passage from Isaiah. The rabbi said something about how to her it meant we can find hope, and her daughter responded that the passage meant that hope would find you.

That is what has happened here. From the darkest night of abandoned hope, hope has found us.

I hope that you might help us make that hope brighter. When we begin fundraising, I hope that you will consider donating to the Jackson Lab through their non-profit arm, and help us make this hope a reality.

Storm Stories

2011-05-09T14:21:00.000-07:00

It's that time of year again in East Texas. Tornado season. Super fun. But anyhoo, a week or so ago found us with serious storms heading our way, and of course anything like this is a major production for us, as evidenced by the above photo. What you don't see is the batteries and things against the other walls of the bathroom.

The time the sirens went off we headed into the hallway. You can see how torn up about the move Dakin was...he thought playing in the hallway was the best thing ever.

Until he got to play in the bathtub! We moved in the bath area the second time the sirens went off. It was pretty stressful, but thankfully our power did not go out (for once) and Dakin had a good time of it.

We are sadly aware, though, of the destruction and tragedy those same storms caused east of us, and pray the families affected will have comfort and peace.

Out of the Mouths...

2011-05-04T18:53:00.000-07:00

Dakin's prayer tonight:

Dear Heavenly Father,
Thank you for this day,
Thank you for Mommy,
Thank you for Daddy,
Thank you for Dakin,
Thank you for Dakin,
Thank you for Mommy,
Thank you for Daddy.
In the name of Jesus,
Amen.

Cute, right?

Better Late Than Never

2011-05-01T17:26:00.000-07:00

And we are still having technical issues...don't know why. So this is only half an Easter post. And not in chronological order either. But here you go. We start with our egg hunt in the backyard, which Dakin really enjoyed. This was the first year he got the concept of the Easter Bunny and was looking forward to him coming. Ignore the weeds.

I have no idea what this was about.

Dakin was so funny, pointing out the eggs as he found them. So cute. We came back inside to find that the Easter Bunny had delivered his basket, filled with all kinds of goodies. Matchbox cars, a Cars book, a popcorn rock (put it in vinegar and it grows crystals), and Dakin's very own pocket volcano (between it, egg-dyeing and the vinegar rock the entire house smelled like vinegar all weekend). He also got a Big Bad Wolf puppet to go with his new book.

He enjoyed it so much this year I can't wait for Christmas!!

The day before we dyed eggs. Dakin was really into that too this year.

Technical Difficulties

2011-04-28T18:36:00.000-07:00

So I am having some trouble uploading my photos to the computer. I promise I will do an Easter and a big storm post here soon...once my computer decides to behave.

But I do have a cute story from today. Dakin was smiling pretty big this morning, so I asked him why. His response: "Happy."

That's all I can ask for.

Quick

2011-04-23T09:49:00.000-07:00

This is just a quick Dakinisms post so I don't forget this stuff...

Today in the car we got cut off, so of course I had to brake. He says, "Aagh. Riddikalous!!". Ridiculous is his new favorite word...if something falls or I express annoyance at something I am doing it will trigger a "riddikalous!" from him.

The other day in the bathtub I was making his bath paints colors fall down the side, so they looked like vertical lines. He looked at them and said, "Aurora Borealis.". Nana is so proud.

He has become such a little companion...he is so much fun to be with. We had a lot of fun this week.

Ok. Like I said...quick. :)

Easter Bunny!!

2011-04-20T06:35:00.000-07:00

We went to storytime yesterday, and I had totally forgotten it was Easter Bunny day. Thankfully Dakin took it in stride and actually enjoyed getting his picture taken with her! (that's why the image is so dark: had to take it with my cell phone.) Even afterwards seeing the bunny around the library he was excited, saying, "Easter Bunny! Easter Bunny!" So maybe we're getting over the anxiety a little? We'll see.

Conversations With Dakin: Logic

2011-04-17T07:01:00.000-07:00

On the way home from the Farmer's Market.

Me: Dakin, where does milk come from?
Dakin: Cow.
Me: Where do eggs come from?
Dakin: Chicken.
Me: (thinking I would be tricky): Where does cheese come from?
Dakin: Mouse.

So much for that. :)

It's That Time Again

2011-04-15T18:40:00.001-07:00

For the last two springs I have posted about what I love about Dakin at the moment. Since spring has certainly sprung around here, it's time for me to get to it!!

I love that he can recite the first two (long) pages of Ali Baba and the Forty Thieves. I have to record it and put it on here...too cute.
I love that he loves to go 'camping'-- where we take him in his room and he plays with the toys stored under his bed. He LOVES this.
I love that he likes to stick his finger in my ear while I yell "Ew! Ew! No fingers in the ear!!". He thinks that's hilarious.
I love that he loves his little matchbox cars.
I love that he loves his two little boats and playing in the water with them.
I love that he knows his way all around his iPad.
I love that he will try to sneak watching videos on it until I figure out what he's doing. I then ask him if he is supposed to be watching them and he smiles and says, "no," and turns it off.
I love that he loves to help me clean.
I love how confident he is becoming...not getting as scared in unfamiliar situations. He didn't freak out as much at his doctor appointments this last week and only complained a little bit getting his hair cut today.
I love how sweet and silly he is.
I love that he loves to play and make people laugh.
I love that he knows all the words to his Imagination Movers songs.
I love that the makes connections between things so quickly...he sees patterns quickly and tells me about them. He will tell me how things are like or different from each other.
I love that he loves to eat out.
I love that he loves to drop off our recycling. We pull into the parking lot and he starts saying "Recycle! Recycle!"
I love how closely he pays attention to things and tells me about them.
I love how he tells me " All done leeping!" when he wakes up from his nap, and before it when he doesn't want to sleep.
I love that he has attitude and if he doesn't like something he will tell you.
I love how he says "I don't like that" when I get out a certain toy...it's one of those ones where you put your hand in and it leaves an impression of it in the plastic needle-like things...I don't know what they are called, but he hates it. I keep hoping he will like it, but to no avail...
I love that he likes being in his back brace. I really think it is making a difference.
I love how he loves his Easter books...I Need an Easter Egg and Max and the Chocolate Chicken.

Ok. That is good for now. I love my sweet boy!!

Because

2011-04-13T18:12:00.001-07:00

Because it looked like this today:

We did a little of this:

These are Dakin's boats, the Jolly Roger and Bucky. The orange one is the Jolly Roger.

Far, Far Overdue

2011-04-08T15:57:00.000-07:00

Once upon a time (four years ago, to be exact), I found out I was expecting. Nervous as any new mom, I bought "What To Expect When You're Expecting." On the inside of the book there was a bookmark with the book's website, detailing forums and such. I decided to head to that site, where I joined the forum for women expecting in October 2007. I 'lurked' for a while, but eventually decided to make my presence known and join in the conversation. We discussed everything...from weird pregnancy stuff to politics. There was some inevitable drama, but for the most part we were a happy bunch who got along.

We all had our little ones around the same time. We went from talking about pregnancy to talking about infants. Cheering each other on, helping each other out.

Then Dakin got sick.

And I can not tell you how they rallied around me.

Women I had never met...praying for me and Dakin, checking up on me, sending cards and gifts. Engineering lunch to be delivered to me at Baylor. Sending me words of encouragement. One night, after Dakin had gone to sleep, I was down the hall at the computer, on the site, when I started noticing Dakin's picture on their posts--one of the women, a graphic artist, had created a blinkie with the words, "Dakin, WTE's strongest little boy. Stay strong, little fighter." One of the women who lived in the Dallas area came to the hospital to visit us and brought her sweet little boy to meet Dakin.

As I am remembering these things I am still brought to tears, trying to type this. People I had never met cared so much about me and Dakin. They never forgot about us.

And they still haven't. Though the group isn't on the WTE site anymore, we have a group on facebook, where we talk and post daily. We have laughed and cried together. We have had crazy conversations. And I know I can talk to them about anything. If I need encouragement I can find it there.

I don't know how to thank them. I can't tell them how much their friendship and support have meant and continue to mean to me. They have, in a large way, helped to lighten this load. Thinking of these amazing women, I think of this song:

"Oh, I believe there are angels among us,
Sent down to us from heaven up above.
They appear in our darkest hours
To show us how to live, to teach us how to give.
To guide us with the light of love."

The morning Dakin couldn't breathe anymore I left the house with him and didn't come back for two and a half months. I was mostly alone in the hospital with him for that time, and the sweet gestures of these women helped get me through it. They are still helping me get through this. I don't get to keep up with them as often as I would like, but they mean the world to me. Thank you, women of the Pumpkin Patch.

(next time I need to talk about our church family. I was just thinking about these wonderful friends tonight and thought I would write about them)

Moving On Up

2011-04-06T19:09:00.000-07:00

That is Dakin! We had a talk with his Speech Therapist today about his progress, and she said he is doing great. He is bang on age level with receptive language, and just a few months behind on expressive (talking). She also said he is quite a ways ahead in some concepts...like, 5 or 6 year old stuff. Smarty pants.

We also worked with Dakin's Physical Therapist on his stander today. It has been hurting his knee, but we got it figured out. While watching him in the stander she was impressed with his head control (it left again for a little while after he got his back brace, but he has evidently gotten it right back). She thinks he was just starting to compensate one way when his back was all crooked, but has fixed himself with the addition of the back brace.

So he is just doing great. I am SO FREAKING GLAD we stuck with getting him used to the back brace, as it has reaaaaaaaally paid off. She was even saying the other day that his spine is starting to look better.

Now if we could just get rid of his allergies we would be perfect. He has been blowing snot bubbles out of his nose for the last two days. Ah well. That is spring in East Texas.

Getting Over It

2011-04-02T18:25:00.000-07:00

Dakin appears, at least a little, to be getting over his fear of the park (you may remember last September when he strained his hip going down the slide. Not good times). For a while there, he didn't even want to set foot in a park, much less swing.

But we took advantage of the perfect weather this week and headed back to the newly-upgraded park, which is now a ton more handicap-accessible. It's awesome!! And Dakin obviously enjoyed it, though I think his favorite part was sitting at the tables and watching everyone (he insisted we do this). When we went the other week he made us sit there too, and said, "happy birthday," so I am not sure if he is associating this park with the one where we had his party last October, or his bud Spencer's party which was at that same park. Either way, he has a long memory.

My Son, the Fruit Ninja

2011-04-01T18:40:00.000-07:00

This game was Uncle Trevor's suggestion. Dakin loves it!!!

OK, OK...

2011-03-28T15:46:00.000-07:00

To the entire universe (read: family) who is fussing about lack of posting: here you go. We just haven't done anything over the moon exciting recently, and the iPad has been holding me hostage. But just so the fussing comes to an end, behold the small excitements of late: Learning to cut in OT Our bi-annual trip to the zoo, where we had to spend ten minutes of my life I will never get back staring at the zoo's newest exhibit: black bears (genus big stupid scavenger freaking black bearicus)

I hate stupid black bears. Hate them. And lest you think, "what a strange thing for someone to hate," let me just tell you I was born and raised in Alaska...I grew up on the side of a mountain. With big stupid scavenger freaking black bears. Who like to sit outside the house and scare the devil out of me, and who also eat the trash out of your cans. I hate them.

Dakin LOVED them, of course. He also enjoyed making a rainbow cake I saw on Omnomicon. I have no explanation for the silly face.

Dakin and Daddy outside playing with Daddy's RC car.

Other zoo notes: Dakin still loves the ducks, and had a wonderful time grinning at a penguin swimming back and forth in front of him. He did not care for the bird house this time around, though, owing to a new ornithophobia. (We were outside at dusk a few weeks ago and the birds were flocking back and forth and scared Dakin to death. Don't ask me why. Since then it's been all "Scary birds. Birds scare me. No birds." Being outside has been a riot, let me tell you.)

Stepacoke

2011-03-22T17:24:00.000-07:00

Ok, so I have been MIA. I admit it. The only thing I have to blame is the iPad...I have been playing on it at night instead of blogging like I should have been doing, right? Ah well.

Today we trekked to Dallas for a visit with the cardiologist. We have been seeing her because I am freaked out about heart health for Dakin--with so few children in the world with SMARD, you can't be too careful, in my estimation.

He was terrified a good majority of the time we were there, thinking he was going to get a shot. I am talking a big freak out--he has really developed anxiety with anything relating to hospitals...and he knows we are at one before we even park. Too smart.

But he took it like a man. We entertained him with his new favorite, "Jake and the Neverland Pirates" on the iPad as he had his echo and EKG done. He freaked out a little at the beginning but managed to calm down enough to get the images they needed. As we waited for the cardiologist to come in, his anxiety started rising again until we told him that she would listen to him with a stethoscope, and for some reason that calmed him right down. He kept saying, "Lady stepacoke!"

His heart was given a clean bill of health, and we were told to come back in 18 months. Nice, right?

We decided on the hospital cafeteria for lunch, where Dakin was in an extremely good mood. Observe:

He was singing "Red, e-lo, lellow, gween, boo..don fogeh purpa too, rainbow color me and you." It was really cute to see him singing and so happy after such a traumatic experience. But that's just how he rolls. :)

Lately

2011-03-18T07:21:00.000-07:00

I apologize for the lack of posting lately. I guess we have been busy! But just so that certain family members won't fuss at me, here's a breakdown of what has gone on this week:

We went to Dallas for Dakin's last Synagis shot, and boy was that fun. He did take it better than last time, though, and he has said "all done shot" for the last few days. I guess there's no point in explaning to him that there will be more next season, and just let him enjoy it.

That same day we tried to see the dinosaur exhibit in Dallas, but it seems it was spring break and everyone and their entire freaking neighborhood was at the museum. We will try that again next week when we go in for an appointment.

We took Dakin to see our awesome friend's horse yesterday. It was an absolutely beautiful day, but Dakin was really wary of the horse until the boys started riding her-then he was hooked. Mommy, on the other hand, had a major allergic reaction that she is still recovering from. It was ugly...

So that's about it this week, I will try to do a more interesting post...

Farm

2011-03-12T16:32:00.000-08:00

I have been on a changing path the last year or so: the more I learn about Big Food and CAFO beef and the like, the more I am terrified to eat foods produced in that way. I have been planning a more locavore lifestyle, hoepfully to go into effect this spring once the Farmers' Markets open. Thankfully, Daddy has borne this well and is taking it with good humor, and Dakin doesn't care.

We made the first big step towards locavory yesterday, by visiting a local farm that produces the most amazing grass-fed beef...wow. I am salivating. But I digress. Anyway, I asked if the farm would mind if I brought Dakin up to see the animals, and they happily agreed. Dakin was so excited all the way up, saying he was going to see cows and sheep and chickens and horses. He had a wonderful time (once he relaxed and realized he was actually there to have fun and this wasn't a cleverly designed RSV shot deception) watching the cows, pigs, and especially the chickens. Just look at this! Animals not shoulder to shoulder and standing in their own waste, and allowed to graze on what they will. Totally the way it was meant to be.

Anti-Big Food rhetoric aside, Dakin really enjoyed looking at these pigs. They are nicknamed the "Three Little Pigs," which is Dakin's favorite story, so he was digging that. Dakin got to watch this little guy get bottle fed. We asked him what he thought the calf was eating, and he said, "yogurt."

It's important to me that Dakin know where food comes from. I don't want him to grow up thinking hamburgers come from McDonalds.

Anyway, thanks so much to Shady Grove Ranch. We loved it and we will be back!!

Up!

2011-03-09T17:35:00.000-08:00

In our new bigger Bumbo chair! We had to tie him in since he was trying to lean over and got stuck that way. We even have this grey table that sits at an angle for him, so he can play on his iPad.

Cheeseball. Anyway, I am so glad we got this! It gives Dakin a different perspective to check out, and a chance to sit somewhere other than in his wheelchairs. He is totally digging it.

And lots of thanks to Presley's mommy for hooking us up with a great deal on this!!!

Difficult

2011-03-06T19:53:00.000-08:00

Today was a difficult day. Most days I handle all of this pretty well...manage to take all of it with a smile. But today was just not that day.

I was reflecting on the lyrics of a song I recently came across (I won't tell you how, because it will forever brand me as a geek) called 'After the Storm'. The artist is Mumford & Sons. Looking at these lyrics, I am at a loss to explain how 4 men could possibly so perfectly describe being the mother to a special needs kiddo. To me, these lyrics follow the emotional roller coaster that this ride truly is--the anger, the loss, the okayness and the not okayness, the determination and restructuring of your entire belief system, the deeply profound lessons and the injustices, the hopelessness and the hopefulness. Check it out.

And after the storm
I run and run as the rains come
And I look up, I look up,
On my knees and out of luck,
I look up.

Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart
I won't rot.

And I took you by the hand,
And we stood tall,
And remembered our own land ,
What we lived for.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears,
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And now I cling to what I knew,
I saw exactly what was true,
But oh no more,
That's why I hold,
That's why I hold with all I have
That's why I hold.

I will die alone and be left there
Well I guess I'll just go home,
Oh, God knows where.
Because death is just so full and mine so small.
Well I'm scared of what's behind and what's before.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

I love the last two lines. I think as special needs parents it is beyond easy to fall into the role of caregiver/parent and nothing else. I know I have gotten there--I have lost so, so much of myself. I neither regret that nor begrudge Dakin that: it is my distinct privilege to serve him, not just as caregiver but also as mommy. It's a role I wouldn't trade for anything in this world. But I have lost much of me in the roller coaster of emotion. And now it's time to get some of me back. Time to let go of some of that anger and fear and hopelessness. Time to find out what's over that hill, with grace in my heart and flowers in my hair.

Finally

2011-03-04T18:34:00.000-08:00

We have joined the rest of the planet. Behold, Dakin and the iPad.

He LOVES it. His favorite apps are the paint one in the first pic, and a iFish pond. Thank you so much, Nana, Aunt Beth, Gramma, Aunt Irene, Bob and Aunt Marie for helping us get this for Dakin. We are sure it will open worlds for him!

Running Around

2011-02-28T18:41:00.000-08:00

We had an interesting afternoon that I wanted to jot down really quickly. We headed over to the church so we could practice in Dakin's power chair (large gym with a nice perfectly level surface, unlike our street!!). We met our Physical Therapist there, and Dakin got to zooming around. It's amazing how much easier it is for him to use the head control in the gym.

Our PT made arrangements for our new power chair company rep to meet us there, and get his take on whether or not Dakin should switch from a head control to a joystick.

Dakin was having none of that.

He tilted his little golden-haired head to the side head control, made the wheelchair turn around 180 degrees, and went the other way. He ran away from him!

It was hilarious. I am so glad Dakin gets to do stuff like that.

Circumlocution

2011-02-25T20:02:00.000-08:00

Many of you don't know this, but I was a language education major in college. No, really. It would have just been French, but I wanted to eat and have a place to live, so I chose French Teaching.

If you are a language person at all, you are probably familiar with the term 'circumlocution.' Most definitions have it as some type of unnecessary roundabout verbosity--for example, saying "the great round shining orb on high" instead of "the sun." Now, while that particular definition is somewhat laughable, the language teacher's definition is more postive: circumlocution as a means of expressing oneself when one doesn't have the proper words to do so. The language teacher in me was thrilled to see Dakin use this the other morning:

Me (walking in his room in the morning): Hi.
Dakin: Double bass. (he loves instruments)
Me: Double bass.
Dakin: Trumpet.
Me: Trumpet.
Dakin: sahfkshkf.
Me: What?
Dakin: shoisahlifwo.
Me: Huh?
Dakin: (putting his wrists together and clapping them): Crash! Crash!
Me: Oh! Cymbals!!

Sigh. My little circumlocutor. **Smiles**

Big Jet and Junior!

2011-02-19T20:32:00.000-08:00

If you aren't familiar with Little Einsteins (and really, who isn't nowadays, right? Joke.) you might not know who Big Jet is. He is the nemesis of the show, always trying to mess with the Little Einsteins and Rocket.

Dakin loves him. I mean loves him. He will go on and on about "Three booster Big Jet" and "Big Jet take animal snacks. Far far away. Poor baby animals. Tummy hungry" and on and on...and on...and on. You get the picture. Anyway, here he is for real. He's the big jet in the picture (*wink*). And here is Dakin's rendition of him. In this portrayal Big Jet has his three boosters out (that's the little spiral right below the plane).

Anyway, though you might enjoy some of Dakin's art. And speaking of art, go check out Junior's blog. He is a finalist in an art contest out of over 400 entries!! His art is amazing! Go Junior!

Conversations With Dakin: Cracker Edition

2011-02-17T19:27:00.000-08:00

(Scene: Dakin lying on floor, munching on a cracker with his small bucket of animals next to him. Day nurse in chair, keeping an eye on things. Mommy at the gym)

Dakin: Cracker! Cracker!
Jane: Where's your cracker?
Dakin: Animal bucket.
Jane: Well, fish it out of there.
(Dakin fishes cracker out and continues to munch)

(A few minutes later)

Dakin: Cracker! Cracker!
Jane: Where's your cracker now?
Dakin: Animal bucket.
Jane: Well, get it out. Crackers don't belong in the animal bucket.
(Dakin gets cracker out again and munches...again)

(A few minutes later)

Dakin: Cracker! Cracker!
Jane: Where is it now?
Dakin: Far far away.

(He had thrown it down near his feet.)

Wordless Wednesday

2011-02-15T19:21:00.000-08:00

Here it is. :)

Imagination Movers Concert--AMAZING!

2011-02-12T19:36:00.000-08:00

So today was the big day! We got up at the crack of dawn (actually, it was before that) and made the almost 4 hour drive to Houston. Evidently 59 is not as exciting as 1-20--there weren't as many big trucks for Dakin to look at, but with a little help from Little Einsteins, we made it there in an excellent mood.

Since we had a little extra time, we popped into the Hard Rock Cafe for some lunch. Dakin was pretty pumped about this--he kept saying 'sit table! sit table!'. The Cafe was full of children all headed for the same show we were!After we ate, we went next door to the concert and avoided the long line (wheelchair=membership has its benefits). The wonderful theater manager, who made everything so easy for us by working with us on handicapped seats, gave us our special tickets and we got in line to sign in for the Meet and Greet. And then, on strict mandate from Nana, who bankrolled this whole trip and therefore must be obeyed, we bought everything in sight. 2 shirts, a scribble stick, wobble goggles...the whole shebang.We got into our seats and got settled. They had seated us in front of a GIANT speaker, so I was a little apprehensive as to how Dakin would take it. I was expecting a DEFCON 1 meltdown, but he actually took the noise of the concert well!

The opening act was Choo Choo Soul. They were great!

And then the Movers! See how close we were? Big Dakin was sitting right next to those stairs. The Movers spent the whole concert going up and down them. Dave was closest to us, and saw Dakin from the stage. He came over to the stairs and played his bass for a minute right in front of Dakin, and then a minute later came down and interact with him. Nina and Scott also made a point to stop and touch Dakin on the arm and interact too!YAY! Warehouse Mouse, Dakin's favorite! The only Mover I got a good shot of was Dave, probably because he was like 15 feet from us.

Dakin was SO excited by Eddie the Monster showing up!!!

The concert was GREAT! Their music is so infectiously fun...we really enjoyed it. You can see in the lower right the small-child mosh pit that had begun to form...glad we were away from that!! And right after the concert, Dave did something very sweet--we were headed to the Meet and Greet when he comes back out and hops down on the floor right in front of us to give a tiny girl some stickers, telling her mom he saw her holding her hands over her ears the entire concert. I guess he felt bad and wanted to make it up to her with stickers. It was very sweet. After the concert, we had tickets to the Meet and Greet. This was the most stressful thing for Dakin--there were lots of kids in close proximity yelling. That didn't go well, but he got over it. The Movers came in and sang two songs. This pic is Dave showing Rich his guitar pick that he had lost.

After the songs we had the photo op. It was so great to meet these guys and Nina--they were wonderful with Dakin. I think Dakin was a little overwhelmed by everything, but he did manage to answer with a 'yeah' when Dave asked him if he had had fun. He also gave Scott kisses, which I didn't see but Daddy did. Rich told Daddy that Dakin is special and kept saying how beautiful he is (to which I should have replied 'of course he is. He's my kid.' :) )

And then we headed home. It took 5.5 hours because we managed somehow to go the wrong way and then we got a flat tire. Thankfully Daddy is a stud and took care of it in a jiffy.

Dakin did amazingly well with this whole thing. He ate (which he NEVER does when we go on big car trips), he handled the noise well and he was in just a great mood the whole day--well, until the flat tire, when he started with 'Go home. Go bed.' He hadn't had a nap, though, so that' understandable. :) FIFTEEN hours he was awake!!

We have waited three months for this concert, and it was so worth it. If you aren't familiar with the Imagination Movers, check them out. Their music is delightful--I absolutely love it. And we learned today that not only are they seriously musically talented, they are wonderful people too. I don't think I will ever forget them coming down the stairs to interact with Dakin. It will be a very sweet memory for us. A truly perfect day.

The pics from the Meet and Greet aren't up yet, but we will post them when they are!!

More For Me

2011-02-10T19:09:00.000-08:00

This is another one of those 'more for me than anyone else' posts. Just some of Dakin's cutenesses.

1. He has been on a tyrant kick lately, being three and all, and he has been telling people "no laughing." The other night we were in his room playing and he commanded his night nurse to stop laughing, so I told him, "What if I said no laughing to Dakin? No laughing Dakin!" To which he replied, "ha ha ha." (Of course we busted up and he got really mad, but that's another story)

2. That same night he was playing with his plastic giraffe and I had his anklyosaur in my hand. He got their muzzles close together and made kissing noises. I don't know where he gets this stuff!!

3. Yesterday morning I went in to wake him up and he told me, "Go away, Mommy."

4. This afternoon I was trying to wake him up from his nap by snuggling him on the couch (it was wonderful!!!). I told him to open up his eyes, and he told me "leeping eye"--translation: sleeping eyes.

OK. Glad I got that all recorded.

Think Again

2011-02-08T19:53:00.000-08:00

When Dakin was diagnosed with SMARD I had given up the thought of instruments for him.

He found something anyway.

Heart Melting

2011-02-03T19:40:00.000-08:00

Tonight when I got home from the gym I walked into Dakin's room to say goodnight. He giggled and smiled and rambled off a whole paragraph about something that I didn't quite get. I told him good night and that I loved him and he said "Iveeboo"--Dakinese for "I love you." I started walking out of the room and he said, "Mommy!" I came back in and he gave me kisses.

Made my whole day.

:)

Conversations with Dakin--'No Go Night' Edition

2011-02-01T17:35:00.000-08:00

After having gotten up at 7:15 this morning, Dakin should have taken a good long nap. He seemed tired, so we laid him down about 1:00.

He laid there for two hours, talking to himself and anyone he thought might be listening. "Mommy! Mommy! Va(Jane, our day nurse)! Wake up Dakin!" He babbled on and on about this and that, and even resorted to asking for yogurt as a way to end naptime. He never did go to sleep.

So it's an early night for the big D. As a last attempt to get him to eat a little before bedtime, I put on Little Einsteins and he started drinking his Carnation. He took 6.5 ounces of it and absolutely refused to have more. By that point it was about 7:30 and definitely time for bed, and so I asked our night nurse to start taking Dakin's stuff in his room. He knows this is an indication that bedtime is imminent, so he started in with "No go night, no go night!"

And, after the flat out refusal to take more milk, he launched his last attempt to get out of going to bed: "More milk!" I'm not sure if the self-sacrifice was worth the 3 extra minutes he got of his show, but we ended up with another 1.5 oz, so it worked out well for me!

Hilarious. Of course, when we all started laughing, he told us "no laughing."

Jailbreak

2011-01-29T19:08:00.000-08:00

I walked in Dakin's room the other morning and this is what I find: Somehow, he managed to scoot himself from the center of the bed all the way to the side. His arm was hanging out and he was laughing his head off. I'm sorry this picture is so dark! He grabs the rails in his crib and half-pulls, half wiggles his way over. So much for a neuromuscular disease. :)

Leeping Bag

2011-01-24T22:07:00.001-08:00

That's what Dakin calls it. Hitherto, it had been a pillowcase with trucks on it, a gift made by Great Grandma. Then Dakin discovered it and it became a blanket. Then today, the ultimate transformation: a leeping bag. Doesn't he look cute in it?

He insisted on staying in it for his nap, and wore it in his power chair afterwards. He is snoozing in it in bed right now.

Silly boy.

Baby Doll

2011-01-23T19:05:00.000-08:00

We found this picture on our day nurse's iPhone...Dakin couldn't have been more than 20 months when it was taken. Doesn't he just look like a doll? I LOVE this picture!!

Synagis and the Aquarium

2011-01-20T19:13:00.000-08:00

Fun Fact: when my brother and I were little, my mom used to joke that she would have to claim the stingrays at Sea World as dependents on her taxes--that's how much money we would spend on fish to feed them. True story. I love stingrays. Don't know why.

Dakin got to experience some stingrays up close, though not necessarily personal. On Wednesday we had to go to Dallas to get Dakin's first Synagis shot, so we decided to do something fun as well. We went to the Children's Aquarium at Fair Park--a nice little aquarium with all kinds of fish (no, really!!) and, most importantly, stingrays. Dakin's favorite part was this big shark tank. There was even a little pond where you can put your hands in and touch the stingrays. We got Dakin as close as we could to the side of the pond (the walls were clear, thankfully), and I stuck my hand in to get their attention. Thinking that my wiggling fingers were fish, they came over and said hi.

OK, and look at this shirt--"This is how I roll." Hilarious, right? So perfect!

Feel Like Smiling?

2011-01-15T20:48:00.000-08:00

Then check this out. This is Dakin dancing to "Shakeable You" (of course, Imagination Movers. He just loves them). The fun part about this is he is moving the right body part when they sing it. Hilarious!

Karson

2011-01-14T11:16:00.000-08:00

Karson passed away. Sweet blue-eyed Karson.

He, like all SMA children do, fought courageously through SMA and lived and loved through the limitations it placed on his body. Despite those limitations, it never owned his spirit.

I have racked and racked my brain for an appropriate tribute for Karson. I keep coming back to Butterfly--I am not certain there is a better one. Strangely, and in ways I can't fully explain, I have found a lot of healing in the lyrics of this song. Though it is little and will neither take away the sorrow nor dull the pain (though with all my heart I wish I could), we offer this to the Riggs family, along with love and prayers and knowledge that where Karson is now there is no SMA.

Butterfly, by the Imagination Movers

Butterfly, won't you spread your wings,
Above the green grass and everything.
Got to fly.
Every color floating under the sun,
Paint a picture for everyone,
In the sky.

Butterfly won't you fly away,
A flash of color on a sunny day,
Friend of mine, won't you spread your wings and fly.
(Bye bye butterfly, hope he's never far away)

Butterfly floating in the breeze,
Across the flowers and over trees,
High and low.
Flitter out, putting on a show,
Fly away when I get too close.
Where'd you go?

Butterfly, time to fly away,
A flash of color on a sunny day,
Friend of mine, won't you spread your wings and fly.
(Bye bye butterfly, hope he's never far away)

Pretty little butterfly,
Painting pictures in the sky,
A flash of color overhead,
Purple, yellow, bronze and red.
Pretty little butterfly,
(Bye bye butterfly, hope he's never far away)
Hope you're never far away.
(Hope he's never far away)
Hope to see you in the sky.
(Hope he's never far away)
Flying on a sunny day,
(Hope he's never far away)
Butterfly.

Goodbye, Karson. Hope you're never far away.

On The Mend

2011-01-13T17:59:00.000-08:00

Yep. Dakin is back to nearly baseline, and I am SO glad. I was really starting to get afraid that this was his new baseline and he would need oxygen all the time. But once we started concentrating his CPT on that upper right lobe, it just opened right up and he is back on room air with a lovely 97-100% O2 saturation. Hooray! All things considered, he weathered this cold pretty well--we just weren't getting the right area of his lungs with the CPT.

We had a lovely day today--he helped me clean the house (which had been sorely neglected since he had been sick), and played all afternoon. Tonight he rocked out to his Ma Mao music (Imagination Movers) and entertained everyone by saying the words along with the music and dancing. He's in bed early since he decided not to take a nap for the second day in a row.

Quick Conversations with Dakin entry:
Mommy: Dakin, are you a cuteface?
Dakin: Yeah.

See? Back to his normal center-of-the-universe behavior.

(*sorry about the rambling entry. I have no cohesiveness in my brain at the moment.*)

Wow.

2011-01-11T18:15:00.001-08:00

This morning I packed Dakin up and took him to vent clinic, entirely certain I would be spending tonight in the hospital with him. That snot has not cleared up, and I was thinking pneumonia, etc., etc.

We got there at 10, signed in (we were first again! Ha!), and went to lunch at a Mediterranean restaurant, where Dakin enjoyed some thyme pie and told me the salt shakers were buoys.

Then back to clinic for our appointment at noon. The RTs came in and ran all sorts of tests: nose swabs, RSV tests, blood gases, etc. Our amazing nurse prac and awesome pulmonologist popped in and said they thought it might be pneumonia (oh goody). A few minutes later, and they were back. Contrary to the pneumonia declaration, they said he just has some atalectasis (lung collapse) in his upper right lobe. They sent us home (YAY!) with some Tobramycin, some Pulmozyme and directions to continue aggressive CPT on that lobe. No problem there: I am the CPT queen.

So thank goodness. I even had the hospital bag packed and ready in the car. They also said his weight gain was good, which was a surprise.

In a spirit of celebration, we went to Whole Foods. We're big partyers.

Now, to the wow. When I got home there was a letter in my mailbox from Dakin's insurance company. (Background: earlier this year we had asked, and had been rejected for, Synagis shots to protect Dakin against RSV--a very very bad virus. We appealed the decision and were waiting to hear a response). ANYWAY. So the letter said that they had forwarded our request for Synagis shots to their medical specialist. The specialist evidently told them that with Dakin's disorder, yes, he needs Synagis, and not just for this RSV season, but for every RSV season for the rest. of. his. life.

Wow.

I am absolutely flabbergasted. I can not believe that this has happened for us: I never have to worry about those shots ever again.

We have been very lucky with Dakin's insurance company: they have always treated us with integrity, but this is absolutely above and beyond. I am shocked and grateful.

And I really hope that wherever their specialist is tonight, that she is having an amazing week.

Snow!

2011-01-09T14:55:00.000-08:00

Yep, we got the forecasted 1-2". Yay! Dakin was very excited about it and kept saying 'no! no!' (snow). I told him after his nap that we would go outside but we needed to wait a minute. After a bit he was saying 'all done minute'. He just couldn't wait to get out.

He enjoyed watching Mommy and Daddy pelt each other with snowballs. He didn't want to come in, but as it was 27 degrees outside, I figured being out for too long wasn't a good idea...

Getting By

2011-01-08T19:11:00.000-08:00

Well, it has been a very long week of snot. And boy, do I mean snot.

What I think happened is that this whole thing started as a cold, but was exacerbated by whatever it is in the air at the moment that is making the whole of East Texas cough. Of course, any time anything is floating around and making anybody snotty, Dakin is affected by it three times worse.

Sooooo...that being said, I think we are finally on the upswing. He did spend some time off the oxygen today, and Volcano Nose did not reappear. We will see from here. When he can finally come off the oxygen, we can start lowering his ventilator settings, but there will be no coming off the O2 until the snot issue has cleared up. I am hoping that tonight might help: we are supposedly getting 1-2 inches of snow and hopefully that will wash out whatever is in the air. Fingers crossed.

Thank you all so much for your prayers. We are truly grateful!!

Patience is a Virtue

2011-01-04T18:45:00.000-08:00

Found rarely in humans, and never in a duck. We grew up quoting that line...it's from a Looney Tunes show.

I am evidently a duck. I want Dakin to be fully over this cold and back to his old self. BUT:

Fact: It takes people a while to get over being sick
Fact: Dakin has a neuromuscular disease with major respiratory involvement
Fact: It's a little harder for those with the aforementioned disease to recover as quickly.

SO: hurry up and wait. But I hate waiting.

ANYWAY. For your reading pleasure, a Conversations with Dakin piece:

Dakin: (Upon overhearing me say that night nurse Denise might need to suction him when he got in bed) No eeuh (that is Dakinese for suction)! No eeuh Dakin! No eeuh Daddy. No eeuh Mommy. No eeuh Denise. No eeuh car game. No eeuh car.

He agreed to let me suction his light stick, but then reneged.

Blah

2011-01-03T19:25:00.000-08:00

Well, 2011 so far has been...suck.

Dakin is still sick--no fevers but a TON of chest secretions that just. won't. come. out. We have managed to keep it in his upper lungs instead of it solidifying in the lower parts. Thank goodness for that.

I have now inherited the sickness, though. Gaaah. It's not too bad, but I can see why Dakin is miserable without Tylenol or Motrin--headache headache headache.

I am going to bed.

One Last Post

2010-12-31T16:15:00.000-08:00

For 2010 anyway.

What a year this has been. So much has happened...so much I dreamed of for Dakin. Visiting amazing places, acheiving amazing things. All in all, I can sum it up in a single sentence: in 2010 Dakin thrived. And I can't ask for more than that.

I hope you all have a blessed and wonderful New Year! And thank you all for your well wishes. I am now not sure if this is a cold or some kind of sinus issue, but he is doing better today, and I thank you!

A First

2010-12-30T18:31:00.000-08:00

I do believe we are in the throes of our very first cold. Don't ask me how it snuck in...I have no idea. You would think the entire germ universe would know about me by now and run the other way when I approach...evidently not this one. Brave, he is.

Ah well. It was bound to happen sometime. I can't keep Dakin wrapped in a bubble forever.

Anyhoo, it's just a lot of lung secretions and dribbly nose and fever for now. Any well wishes or thoughts on our behalf to whatever part of the universe you worship or don't would be appreciated...I am really hoping to keep this out of his chest.

Volcano Nose and Christmas Weekend

2010-12-28T19:45:00.000-08:00

First off, we had a wonderful Christmas. Nice and quiet, just like I like it. Dakin got a lot of wonderful gifts: a pet puppy (the kind that looks like it's sleeping--it breathes even!) that Dakin named "Question Mark" and will deign to brush occasionally, some play-doh stuff, a rotating light lamp from his girlfriend in Utah, DVDs from his aunt, a mini globe, a carousel music box (he loves merry-go-rounds), beautiful pillowcases from his great-grandma, some neat projector flashlights, 2 cars and lots more. I think, though, the most exciting one is the one Nana got for him (and he doesn't even know what it is yet!!): tickets for us to see the Imagination Movers in concert, and to attend the meet-and-greet following the concert! That will be awesome...more to come on that.

Now for Volcano Nose. I don't think he's fighting off a cold because he hasn't had a fever, but boy howdy, the secretions have been non-stop. He's never been junky like this--even to his nose dripping. Of course, the nose dripping is a great source of amusement to him, and he has dubbed his snotty nose "volcano nose". He enjoys trying to make it erupt too--he laughs so hard when he blows his nose and gets snot out. Hilarious, right? Yeah.

Anyhoo, it was a wonderful weekend. We hope everyone had an equally wonderful one!!

Although It's Been Said Many Times, Many Ways...

2010-12-24T18:09:00.000-08:00

"May Kibby" to you.

(**notes: you might be wondering if Dakin is wearing what appears to be a tank top in the dead of winter...well, he is. It's his spinal jacket undershirt and it's really warm. :) Also, Big Jet is the bad-guy character on Little Einsteins and Dakin's newest obsession, in case you were wondering.**)

Merry Christmas Eve!

2010-12-24T05:45:00.000-08:00

Just some random Christmas pics...here is Dakin 'helping' me make marshmallows for Christmas gifts: Powdered sugar on the head and nose...

And our yearly tradition, Santaland! This year we waited way. too. long. to go, and were thusly in a car line for TWO HOURS. Fortunately, the little one was in an exceptional mood the entire time and seemed to enjoy watching all the cars. We got him a 'glowy stick' from one of the roadside vendors and he just loved that. I think the part he loved best was making it turn off. We would hand it to him and he would tap it on the back of the seat in front of him to turn it off, at which point he would laugh like it was the funniest thing ever. One time it didn't turn off quickly enough, so he kept tapping it and (in frustration) finally said, "OK! Broken!" (because he wanted it to be 'broken'. Ha!) He also learned the expression 'bull honky!' from when a car cut in front of us. He repeated that quite happily for some time thereafter.

First Day of Winter

2010-12-22T05:36:00.000-08:00

I don't know if the 6 weeks of 115 degree heat we have during the summer is really worth a shorts/t-shirt first day of winter, but Dakin seems pretty happy about it. :)

Conversations with Dakin--Yogurt

2010-12-17T18:53:00.001-08:00

Day Nurse Jane (feeding Dakin peach yogurt): Dakin, what color is this yogurt?
Dakin: Yellow.
Jane: And what flavor is it?
Dakin: Yellow.

So My Kid is Bulletproof?

2010-12-16T19:05:00.000-08:00

Ok, not really. But it kinda looks like it. Don't you think? See that white thing around his chest? That, my friends, is a spinal jacket. It's purpose is to help straighten out Dakin's back and in general make things easier for him.

We were fitted for it a month ago--an experience I didn't write about, maybe because the whole thing was only slightly preferable to a stint in a gulag. Nightmarish, the fitting was.

Today wasn't much better--think maybe a root canal minus the drugs. The second we parked the car Dakin was saying, "No guy up! No guy up!!" (The orthotist had to stretch him out for the fitting, suspended over two stools--oh, it was horrible). He kept with that same theme the whole time we were in there--'no guy up' and 'no owie!'. Tears and gasping later, we got the jacket on and all of a sudden he was three inches taller. Amazing.

It will take some getting used to, but he only has to wear it when he's in his stander, lying down or in his old stroller. So yay. He rode all the way home in it and was happy as a clam.

Bridging the Gap--Announcement!

2010-12-15T11:58:00.001-08:00

In keeping with the spirit of awesome announcements recently, here is another!

Introducing..

Bridging the Gap!

Bridging the Gap is our new SMARD blog, created for these intents:

To give the SMARD community a place to communicate
To help raise awareness of SMARD
To forward SMARD research

So come check us out! We will continue to be here at The Daily Dakin as well, so you can get your (sometimes) tri-weekly Dakin fix. :)

Too Much Cute

2010-12-09T19:42:00.000-08:00

I have been meaning to write down some of the amazingly cute things Dakin has been doing, but I keep forgetting. No more! This is really a post more for me than anyone else, but someone might find these funny.

1. When Dakin is lying on his side, he can raise his leg in the air and leave it there pretty much indefinitely. He was playing with his markers on his side and a few minutes later I came to pick him up and there were thirteen markers up his pant leg. He just put them in the leg hole near his ankle. Silly thing.

2. With the aforementioned markers, he had them to play with before he went to sleep the other day. The room was darkened, I was on the computer and he was being quiet, so I wasn't watching him too intently. When the lights came on after his nap his entire face was green. He had managed to get one of the caps off, and, well...he looked like a black ops guy.

3. He has a few favorite phrases: "Over that way", "over here", and "broken" are among them. He tells me where things are and which way he wants to roll with 'over that way' and tells me which eye itches with 'over here'. He was drawing a truck the other day and left part of it off. I asked him where the rest of it was, and he looked at me and said, "broken."

4. He also loves to say "fix it" after telling me something is broken.

5. If something isn't in use, it's taking a nap. If I put down something he's looking at, he'll tell me it's taking a nap. He snuggled his hand up next to me the other day and it was, too, taking a nap.

6. I think it's adorable that he can tell me which Imagination Movers episode a song comes from within three seconds of the song starting.

7. He says, "goo me" after he burps.

8. He was hiding under something the other day and we asked him where he was. He said 'gone.' That's his other favorite new thing to say. If I am searching for something, it's always 'gone.'

Hm, I think that's it for now. Again, this post is more for me. But I hope you enjoyed it anyway.

Hanta Pictures

2010-12-05T19:38:00.000-08:00

That's what Dakin calls Santa. Hilarious, right? Like the Hanta virus? Ok, maybe it's only me who thinks that's funny. Anyhoo...here's this year's Santa picture. You will note how thrilled our little hero is by all this. I was hoping it would go like last year's pic...but you know what they say about the best laid plans of mice and moms... We did get a better one where Dakin was in his chair, but I can't get it to upload. Boo Photobucket.

See our same sweet Santa? This man is so kind and gentle with Dakin, and remembers him every year. He loves seeing him, even if the feeling is (at least this year) not mutual (boy, you should have seen the tears!!).

And again, our wonderful friend T at the mall made us an early appointment, came in early so we could do this, let us Lysol the set (and Santa himself!!), and even got Santa a new pair of gloves right out of the box just for Dakin. I know I have said this time and again, but we are unspeakably grateful for these people. Three years in a row now they have bent over backwards for Dakin. And we can never repay them for it. We are so blessed to be put in contact with people who want to help Dakin. Truly, immeasurably blessed.

Exciting News!

2010-12-02T19:07:00.000-08:00

Hi all! We have a seriously amazing announcement to make! My friend Lisa, who is also a SMARD mom, has been working with the Manton Center at the Children's Hospital in Boston. The Manton Center researches orphan diseases, and has agreed to actively solicit doctors to begin researching SMARD!! YAY!

The tiny but awesome SMARD community has come together to help this study happen. My plea to you, dear readers, is that if there are any other SMARD families out there, please contact me so we can get you involved in the study. The more, the better!

I personally want to thank Lisa and all her hard work. I can't believe how far we have come in the last two years since Dakin's diagnosis! When we began, there were next to no other families to commune with, little by way of information on SMARD, and no research we were aware of. Now we have (found out about, thanks, Victoria!!) genetic research going on, as well as the promise of active research, as well as a wonderful community. YAY!

Tis the Season

2010-11-29T19:54:00.000-08:00

For Dakin to tell me 'no camera'. Oh yes he did. Here I am, innocently trying to snap some pictures while decorating the Christmas tree, and the boy is telling me no camera. Oh well.

Daddy started out like this, but ended up getting into the decorating. These are the only pictures His Majesty would allow me to take.

So there's our pretty little blue tree. Dakin's favorite part was kicking the ornaments he could reach with his little foot. Later, though, he really enjoyed sitting in front of it and looking. Yay holiday season! We have Santa pics coming soon! (Yes, we already did them...ha!)

Happy Goofy

2010-11-26T17:22:00.000-08:00

That's Dakinese for 'Happy Thanksgiving'. Sorry to be posting late, but I just wasn't feeling it yesterday, though we are beyond grateful for everything we have been given. And I should enumerate those blessings, so here they are:

We are grateful for:

The people who provide the electricity to run Dakin's ventilator
The doctors, nurses, therapists and case managers who worked hard in school to become great, and who continually work hard to keep Dakin healthy
Our amazing nurses, who love Dakin like their own
A medicaid system that has provided for his every need
An insurance company that has treated us fairly and with integrity
Yogurt and Carnation Instant Breakfast, since that is the bulk of what he eats
The Imagination Movers, Mickey Mouse Clubhouse, Chuggington and Little Einsteins, for getting him through countless vest treatments and eating sessions
Our families, for being there for us and loving us
Our church family, who has loved and supported us like a real family. We truly feel they are one
Dear friends with whom we share the weight of a medically fragile child
The countless people who bend over backward for Dakin without even knowing him
Markers
Books
Powerchairs and suctioners
And most of all: a little boy who shines with life and happiness. Who believes he runs the world and lets you know. Who loves folding clothes and cleaning closets, singing songs and reading books and playing with play-doh. Who is the light of our world.

I could go on and on. We are truly, fully, and immensely blessed.

We spent the day cleaning closets and eating. (Look, that's just how I roll. I like cleaning. :) ) At dinner, Dakin said yes to being grateful for Mommy, but then said no to everything else until we got to Kamie (you may remember his church girlfriend). He's evidently grateful for her. He decided he was grateful for his nurses too. Dinner was so much fun--with him at the table, of course refusing to eat anything, but yakking up a storm and running his little hand along the table. He did manage to stick his hand in the cranberry jello...I'm grateful that he can do that too.

We hope everyone had a wonderful Thanksgiving!

The Presence

2010-11-23T18:20:00.000-08:00

Jonas was laid to rest today. I have been thinking about him all day, him and his sweet family. Looking at the clock, subtracting an hour for Utah time, praying for Whit and Lindsey's peace.

We took Dakin out for our customary walk on nice days. I wasn't keeping much of a conversation up, thinking as I was.

But then it happened.

The butterfly. It flittered right across our path. Orange and perfect, at exactly 12:15 pm.

It was a message to me: a message of how Jonas' parents are being cared for by unseen hands, and how we will be cared for when our time (I hope it's a billion years from now) with Dakin comes.

That little butterfly was a tiny bit of peace for me. It reminded me of a quote I read recently:

Joy is not the absence of pain. It is the presence of God.

Rest in peace, sweet Jonas.