Tuesday, June 28, 2011

Independent Health

A guy from Independent Health came today. Since all of this started with Lily, we've had our own personal counselor, Karen, provided by Independent Health to be our liaison to services and just in general be our anchor to the real world.

John, the company representative that visited us, was wonderful, asking us about our experience with Independent Health and, to be honest, we got a little choked up thinking about the level of service that they offer. They are real. They really care. And we couldn't be more happy with them.

They are looking to feature our story sometime soon in their promo materials. We'll let you know what happens. We just wanted everyone to know how comforted we've been by this company, who act more like concerned neighbors than corporate entities. They know us. They talk to us. They walk the road with us.

Saturday, June 25, 2011

Went to the movies!

Lily and her friend Sarah went to see Cars 2. It was pretty awesome. We ate lots of popcorn and played the Crane game on the way out!

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Lily Says Thank You!

We made a quick video to thank our friends at Eye on Education for sending Lily a 'Get Well' Pillow Pet after her recent eye surgery. We thought we'd share the Thank You video with everybody--because we Thank all of you for all you do!

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Sunday, June 19, 2011

Lily sending her Windvitations.

Lily Update...


Not a whole lot new to report, but we thought we'd do a quick "bring everybody up to speed" post. Lily's been doing really well lately, aside from the typical 4-year-old angst, independence, and crazy creativity. Her latest inventions include a "Duck Dog," which is a dog with wings and who quacks, and "Windvitations," Invitations that are written on paper kites and delivered by the wind. She dreams these things up while wearing a Tinkerbell costume, ladybug wings, a witch hat, and Mardi Gras beads. Oy.

She's been loving being outside lately, and watches for her friends Reagan and Sydney across the street to come outside. (See the video below!) Her friend Sarah and her cousin Siobhan are favorite playmates too and we are all collectively enjoying the finally warmer weather!

Her latest MRI was last week and we met with the Doctors who told us everything continued to look good. The "little piece of something" that we've referred to for months is now being called residual tissue versus leftover tumor. The doctor said the MRI looked great and we would continue to monitor. We have another year or so of MRI's every 3 months, and if those stay clear, then we go to every six months, then once a year and so on until they are sure we are in the clear.

Tomorrow we have Eye Surgery to correct the nerve damage from the brain surgery. It's outpatient, so we will be bringing her home tomorrow afternoon. While her vision itself is in good shape, her eyes wander and she still tends to be more left side oriented. For the week after the brain surgery in September, she had real difficulty even glancing to the right. That has since largely resolved, but her eyes still lack the muscular control they had pre-surgery. We're hoping that this surgery fixes that.

Other than the Eyes, balance and coordination are still a minor issue, but the more she plays, the better we see that getting. She also hops a little when she runs, but we think that's more from coming from a family that is not known for their running skills, unless they are being chased.

All in all, things are good, and we are grateful, blessed, and happy. We sincerely appreciate all that people have done and continue to do for our baby. (Who will tell you matter-of-factly that she is no longer a baby, but a "Big Gull" and please do not call her baby. But, she's still our baby.)







One Night in the Neighborhood

Pictures we took on one night in our neighborhood: taking a walk, playing with neighbors, and laughing at the roof-walking duck!

Neighborhood Night from Michael Fisher on Vimeo.