In These Small Hours

I had the most amazing afternoon. It began with snuggling Dakin on the couch after his nap. Then I mentioned making tortillas, and he decided he wanted to get in his chair to help (or so I thought. Turns out he just wanted to eat them). We put his new favorite book (How to Potty Train Your Monster) on his tray and he had a ball...all afternoon...turning pages and having me read them. I must have read that thing 15 times total today. He just loves it. One of the pages just cracks him up--there's a monster named Cranky on it, and Dakin waits with a giant grin on his face for me to ask him what Cranky says ("rroooaaarrr!"). Dakin will reply with a 'raaaar!' It's really cute.

That's how we spent the afternoon. Snuggling, tortilla making, putting laundry away and doing dishes, sprinkled with huge smiles and potty training monsters. It was amazing.

The whole afternoon made me think of another of 'our' songs--"Little Wonders", by (of course) Rob Thomas. It's about the little things making up a life. Memories and experiences that, no matter what happens, will never cease to exist. That was this afternoon.

Let it go, let it roll right off your shoulders

Don't you know the hardest part is over?

Let it in, let your clarity define you

In the end we will only just remember how it feels

Our lives are made in these small hours

These little wonders, these twists and turns of fate

Time falls away but these small hours

These small hours still remain

Let it slide, let your troubles fall behind you

Let it shine until you feel it all around you

And I don't mind if it's me you need to turn to

We'll get by,

it's the heart that really matters in the end

Our lives are made in these small hours

These little wonders, these twists and turns of fate

Time falls away but these small hours

These small hours still remain

All of my regret will wash away somehow

But I cannot forget the way I feel right now

In these small hours

These little wonders, these twists and turns of fate

Yeah, these twists and turns of fate!

Time falls away, yeah but these small hours

And these small hours still remain.

Another Chance to Help Cure SMA

So I am WAY behind on this, but please take a second to vote for Sophia's Cure in the Pepsi Refresh Contest. They are in the running for 250,000 dollars!!! That would go so far. Please vote and promote! We only have a few more days.

Thank you again!!

The Object of His Affections

Today, anyway, it was Kelly, from Handy Manny. (He used to be into blondes...I don't know what the sudden interest in a redhead is!). We found a half-colored picture of her in his coloring book today, and he was all huge, shy grins and looking away. He can even kind of say her name now...it comes out as a 'kuh'.

The other funny bit from today was this: I was drawing him a picture of a boat on his tray with dry-erase markers. I drew Dakin on the boat, and he started fussing. So I erased him, and Dakin said, "bye-bye me." It was pretty cute. In fact, he can say "I am cute" now. Just a side note.

Swimming

So one might be inclined to think that a child on a ventilator might have some trouble with large bodies of water.

You would be right.

Buuuuuuuuuuut, I never let a silly thing like difficulty stop me. We took Dakin swimming yesterday in my awesome friend Liz's pool. After thoroughly gearing Dakin up in a special built-in floatie swimsuit and an innertube, we got in. Now, this isn't Dakin's first time in a pool. We went last year, but we didn't have a setup like this. Needless to say, Dakin wasn't thrilled with the accoutrements. We ended up taking the floaties out and the innertube off, and he was much happier after that. He kicked at the freed floaties, and splashed with his hand.

It was fun. A great huge thank you to poor Jane who had to hold the ventilator to keep it out of the water. Mind you, she did this in near 100-degree heat.

Ten Thousand Smiles

That's what I feel like I get every day from this boy.

I have started putting him on the couch with me to snuggle and help him wake up from his nap. Yesterday, he was in his post-nap fog when all of a sudden he says, 'me.' Me can be Handy Manny, but in this case he was looking over my head at pictures of himself. Cute boy. Then he stuck his thumb in my eyes and told me they were eyes. He proceeded to tell me where my nose, ears and hair are. He also informed me I have two eyes.

Good thing he's keeping track of these things for me.

Tonight he pulled himself over to the edge of the bed and I got to sing to him and play with him as he fell asleep. I truly treasure these times...times I get him all to myself and get to just enjoy his spirit. I am so privileged to get to see that smile just for me.

Just So

Just so relatives don't start fussing at me for not posting (wink), here is a recap of Dakin's week--it was a good one.

We went to Storytime for the first time at our local library. Dakin kind of sat back and took everything in--he was looking slightly aloof at the whole thing. The part he really enjoyed was the renegade child who was running back and forth across the room.

We made it to the swings this week as well--Dakin was all smiles for the 45 minutes we were pushing him.

The highlight of the week (for Dakin, anyway) was the two days they spent tearing up my front lawn to redo the water lines. That meant there was a CONSTRUCTION VEHICLE in our front yard! Yes, you read that right--Dakin had his very own trackhoe. We sat outside for a half hour watching it dig a perfect rectangle. He thought that was marvelous, and had fun watching the guys doing it. Now there is a lovely large mound of dirt in roughly the shape of two graves--we were commenting that it was too bad they couldn't have done it in October. (YAY! Halloween is coming!!!)

Well, I wanted to post pics, but the camera is rebelling again. That's it for now.

Wordful Wednesday

Dakin, two or so weeks pre-'crash'. I LOVE this picture!

Butterfly House

I never got around to blogging about this, but a few weeks back we needed to see the orthopedic doc. I set it up so we could go to Dallas for the appointment because I wanted to take Dakin to the Butterfly House at Discovery Gardens.

It was amazing, but incredibly hot and humid--even more humid than outside, but that's because they're tropical butterflies. It's a beautiful setup--you start one story up and walk down along a long ramp to a picturesque garden-type setting. We got there just in time to watch them releasing the new butteflies. These ones here are blue morphos--they're HUGE and their wings are this entrancing blue. I wish they would have opened their wings for the picture... Dakin enjoyed seeing the butterflies flit around for a little while, but he started sweating pretty quickly. It was just too much in there. We're going to try to go back in October.

Night Night

These are just some recent pics of Dakin at bedtime...I think they're kind of fun. This first one is pretty self-explanatory, but Dakin likes to have a sticker at bedtime to play with. I had lost track of where he had this one, but found it, as you can see. I have no idea how it got there. Dakin just loves his markers.

Sunshine and Rainbows

Our Children's House at Baylor (where we have vent clinic)

That was yesterday...vent clinic again and it went great! We first went over to Medical City to visit the ENT--you may remember that Dakin has been having some problems with random desatting (for the happily uninitiated, that means the oxygen levels in his blood are going down) just as he falling asleep, but none during the day, so Dr. G (pulmonologist) wanted us to visit him to see what he thought.

Then we headed over to Genghis Grill for Dada's birthday lunch. We were first in the restaurant, so we had plenty of room for Dakin and his chair. He even had a few bites of noodle!

On to vent clinic and all the usual--x-ray, leech lady coming to take blood, visit with the amazing outpatient case manager and nutritionist. This time was special, though, because we had a visit from Dr. R, who is a physical therapy doctor. We have been wanting to discuss a bowel regimen so we could get on the path to potty training this boy...she is going to work on it for us to see how we should get started.

Dakin didn't gain as much as he should have the last three months, which was kind of a shock to me as he seems to be eating so much more now. In talking it over with the nutritionist, we don't think it's so much that he's not eating enough, but more that he's moving more now, so we need to really work on upping his intake, which is hard with a kid who just. won't. eat. sometimes, but we'll get there.

Ok, now for the exciting stuff: pulmonologist and entourage enter. Dr. G thinks the desatting is due to the HUMONGOUS leak Dakin has around his trach (the reason he can talk), and has ordered an upsize trach for him-Dr. G thinks we have enough room in Dakin's stoma to get it in on our own at home (YAY!!!!!!! I was so worried he would have to do surgery to enlarge his stoma!!!).

So the upsize should solve the desatting problem. We also get to drop Dakin's atrovent (one of his breathing meds) and go to twice daily treatments instead of three daily! And instead of just popping him on the oxygen when he gets to 91% O2 saturation, we can wait until 88 and see if he can pull himself up.

He also said Dakin looks great and that we do a phenomenal job with him (that's the sunshine and rainbows--my job is justified every day by the smile on my boy's face, but to hear a doc tell you you're doing a good job is icing on the cake).

Soooo...sorry about the long post with the technical jargon. It was just a good day!

Mo Eee

Happy 4th, everyone!

Tonight we watched the Macy's Fireworks. Dakin was interested at first, but then decided it was more fun to try and poke me in the face with the back scratcher. Ah well.

He did get a sentence out, though. He decided he wanted more green fireworks, so for the last 10 minutes or so of it it was 'mo eee.' I explained to him that I couldn't make them do more green ones, but to no avail, as usual. :)

Out of the Mouths...

A few weeks ago we started teaching Dakin to pray. This is one of his favorite activities in the evening now, and he will remind us if we don't do it.

Here's how the conversation usually goes:

Dada: What do you want to pray for?
Dakin: Mama, Dada.
Dada: What else?
Dakin: (raising arm to point to self) Me!
Dada: Anything else?
Dakin: Me me me me me me. (Giggling)
Dada: Ok. Fold arms.

Dakin folds his arms at this point but will fling them out as soon as he can, laughing and watching us for a reaction. He has started refolding, though. At the end he'll say 'ah-mee'. He'll say it in church too--it's pretty cute.

Anyway. He used to pray about Rocket and Mickey and green and blue and brown, but he's just sticking with Mama, Dada and himself now. I need to record the 'me me me'--it's hilarious.