Getty Owl Foundation

Thanksgiving

From Kate:

To our sweet little owl, on the eve of your 8 month birthday we want to give thanks. Thank you for your beautiful eyes and your quick wit. Thank you for being so brave in the hospital and showing your mommy and daddy what unconditional love truly is. Thank you sweet Getty for being so patient with us while we learn as much about this disease as possible so we can be your warriors and fight for the best care that you deserve. Thank you for your grace and mischievous nature. You are a gift, a gem, and our baby. Happy 1st Thanksgiving. We love you!

New Upcoming Event for This Weekend!

There is a new Getty Owl event for this weekend!

Click here for details!

Happy Thanksgiving!

Synagis & RSV

From Mark:

Getty got her second Synagis shot today. That is an antibody designed to protect against the respiratory syncytial virus (RSV). While RSV may present as a common cold in many kids, it can be life threatening to children with compromised respiratory defenses, like Getty.

The RSV season runs from about November to April. So, Getty will need to have very limited public exposure until spring. Nobody can come into our home who is or may be sick or exposed to others who are sick. All hands must be washed and/or sanitized in our home.

If either Kate or I gets a cold, the infected person must sleep separately, wash frequently, wear latex gloves at home, and wear a mask at home.

The Kaiser nurse told us the Synagis shot costs Kaiser $2,000 per dose, and Getty needs it once every four weeks. That works out to $14,000 worth of Synagis shots to get her through RSV season. For that price, couldn’t Kaiser just pay our way to Australia for the winter?

Oh well, Getty will be on lockdown until spring. Good thing it’s football season!  🙂

Completely Exhausted

From Mark:

Now that we are home, we are finding out just how exhausting surgery actually was. We are completely wiped out.

Thankfully, Grammy Nola has come over to lend us a hand, and some dear friends have brought us wonderful meals. Grammy Evelyn is helping us get some Thanksgiving dinner going. Thank you all!

We are adjusting to some new routines with the G-Tube, making follow-up appointments with doctors, running a few errands, sleeping with Cooper, and doing a few chores here and there the best we can. The biggest part of all that is the sleep. Getty’s recovery has gone well, but we need some recovery ourselves.

We just received a loaner pulse oximeter from SMA parent, Debby St. Onge. Now, we need to figure out how to use it while we try to get a pulse ox of our own. You have no clue who we are, yet you trust us with a valuable piece of your medical equipment. Thank you, Debby! We hope to have our own pulse ox pretty soon.

HOME!

We are so glad to be together at home.