Crazy Town, Population: 2

Well, last night brought us another trip to the emergency department. Fun for all. Leigh was beeping non stop at home and had a 103.3 fever. A little tylenol and she was trying to jump off the bed at the hospital; 3 hours later and we were back home.

Otherwise, life carries on; the mayor of Crazy Town was doing his Superfly Jimmy Snuka impersonation. Snuka's signature move was the "Superfly Smash."
Crazy Town's electorate was not impressed.D-Hawk livened it up by incorporating large balls, like a seal at Seaworld.This has a bit of "cougar pouncing from tree" flavor to it.

March For Babies!

Baby Leigh sitting outside for the first time earlier this week. We've been doing some unauthorized time off the ventilator, and here she is, outside, wearing an HME (Heat Moisture Exhanger). She looks a bit like a Saint Bernard with that barrel under her chin. She did not like the sun in her eyes.
And here she is on her actual birthday, playing with a new toy.Today (Sunday) was the March for Babies at Lighthouse Point. All of you contributed and helped us raise over $3000! That's a lot of money - and we thank each and every one of you.

DKV, SHV, and Aunt Molly ran (with Danny in the stroller) the 5 1/2 mile course. And we won. Granted, only one other person was running. We beat her quite badly. We also removed the batteries from some kid's electric wheelchair, neutralizing him as a threat to our sweep of the top three spots.
DHV tearing it up at Lighthouse Point today. After he "tested" each riding lawn mower on a recent Lowe's expedition we bought him his own John Deere shirt. He wears it well.Grandpa Lee and Baby Leigh.Chaos.Mr. T impression. "It's my birthday . . . I pity the fool!"Happy Leigh.

Leigh Crawls!

Here's a thrilling video of Leigh resting her head repeatedly, Danny providing some entertainment, and Leigh worming across the mat.

One Year Old

Leigh made it to one year today.
She's still on a ventilator but bigger than ever - 20lbs today!
Gentle brother sharing the card he made for Leigh (with Neen).Rough and tumble brother Danny showing Leigh how to smash her new cars together.Ice cream cake from Ashley's.Then everyone had some. This is the face Leigh makes with any food.Danny entertaining die frauliennen. And being fed.Reading some TinTin.

Bath Time

Tonight, during bathtime, DHV started going on and on about a "big mountain."
Turns out he was talking about waves.
Like when you shake water up in a cup and it goes all over your face.

"Crawling"

Baby Leigh, or "Lee-Lee/Li-Li," as Danny has taken to calling her, has been wriggling across our mat. It's definitely a volitional and goal-directed form of locomotion, but it doesn't exactly look like crawling. It's more of a generalized spasm of fat-padded arms and legs, punctuated with facedown "breaks" which last anywhere from 5 seconds to eternity, which result in LRV moving towards a toy. In this case, teething rings. Li-Li moves a couple feet and we're all happy.
I love the lifted eyebrow.
Sort of like, "I'm sick, any normal family would have me in the hospital, and you people are making me do THIS? For some rings? Rings?!"
DHV dancing for joy at the occasion.
"Who you laughin' at?!"

Easter Update 2/2

Easter started off nice and bright. DHV was ready to go on Easteregg patrol."Oh! Red one!"
"Oh, puurrrrppull one!"
"Oh, ahm [orange] one!"
"Oh, that one is pink!"
"Oh, green one!" Check out that outfit.The spoils!Jelly bean!Here's Baby Leigh checking out her basket. Right after this we took her to the ER. She's has a cold for the past 36 hours and we were having problems with the whole "breathing" thing. A quick tune up with higher vent settings, two new medications, and some oxygen and she's as right as rain. It does put a damper on our plans to get her off the ventilator soon, but at least she's still at home. DaDKV got the sense from the pulmonary folks that we were really pushing the envelope.

Easter Update 1/2

Here are some recent photos from around the house. The women folk enticing LRV to try some apples. Good luck with that!
The degree of difficulty goes up with DHawk jumping in your lap.Baby Leigh off the vent (for a 60 minute trach collar trial)! There's just a little piece of foam over the trach.Big brother is up to something.DHV dancing to The Cat in the Hat.Danny's too big rain jacket.Here we are enjoying some time off the ventilator. It's nice to be able to walk around the house with your baby.