Wired and Plugged in 12 stories high

Larkin is doing so great!  I couldn’t have asked for a better day with her.  She was so patient and quiet while the EEG tech glued all the probes to her head and then wrapped her up.  She wears a little backpack that holds the control unit which plugs into the wall.  We have a long cord but we are confined to the room.  No news until the morning so I am waiting with a knot in my stomach.  Since I play a Neurologist I peeked into the video room to see what the waves looked like.  Much improvement from 1.5 years ago but I could see spikes – but since I am not a real Neurologist I am going to defer until morning.  Thought I would share some pictures from here in STLCH.  It is good to be here though as the things you see happen here, the children who are going through so much more, families with that blank tired look…….makes me appreciate Larkin that much more.  Things could be worse and perspective is given.

Some friends that I have made along the way in this journey came by the hospital to visit us and bring dinner up. I enjoyed visiting with RK, Adrienne, and Julie for a couple of hours and it was a nice break from worrying.

The view from our room – not too shabby at 12k a night 🙂

She was doing laps around the crib all day

Backpack and she is hating her wire pony tail

Good friends

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6 Responses to Wired and Plugged in 12 stories high

  1. Amy says:

    aww i love that you guys got to be together!!! hope the results come back clear!

  2. I didn’t know she was on the ketogenic diet. Jax is on the diet, but I bet its a lot harder for you because Jax is g-tube fed, its just a different formula. But I do have to blend it and mix at exactly the right temp, so it takes me longer to make. Praying the EEG looks good and you can transition off the diet.

  3. Jen says:

    Here’s praying for a productive but restful night. Thanks for the updates. Ya’ll are so cute.

  4. Zoey's mom says:

    You know I am still hanging around,don’t you?Life is well,complicated as ever.And you the same I see.Larkin looks darling as ever,even with the ultra cool cap.You look pretty great yourself.Praying for good stuff in the morning and please know,I do come by often it’s just that my mind is usually fried by the time I pop in.My comments would probably borderline illegible and lacking one cohesive thought to another.But know we are still totally loving our Larkin.

  5. Cara says:

    Lindsay and I are sending you every good thought we have and saying many prayers that you get the results you sooo deserve! Big hugs to you both! Xox

  6. cathy says:

    Thanks for the update, in our thoughts and prayers. Your sweetie looks so cute and what a great group of friends to visit with and spend some time together….safe travels home.

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