Grateful for an uneventful week

Full week at home without symptoms-new record!

Lucy is still safe. She has been resting on the couch all week besides a few brief outings, and very conscientious about her rules: not straining to do anything, not bending from the waist, not jumping or running. Nausea and headache show up every so often, but every day she feels more like herself. She works hard on her schoolwork despite her lack of stamina.
She did have a setback Monday that involved a painful restitching of her previous drain site in her back, which had continued to ooze csf, but she talks through her emotions with clarity and insight, which helps her move on in a healthy way. She is sleeping great, her moods have stabilized, and she does not seem burdened with the anxiety her parents suffer.
She will take another week off school and other activities, though the ENT indicated she could drink through a straw today, cause for great celebration. 5 weeks is too long for such a major restriction!
We love all of you-- so grateful for the ways you continue alongside us when it would be logical to feel Pittman-fatigue.
We will keep you updated on the next few weeks, which will involve some follow up procedures and MRI.

Home again, home again

Happy to report that Lucy came home today!  She had the lumbar drain in for 10 days without incident, and yesterday when they clamped her drain she had no leakage. Her doctors felt that she had waited long enough and pulled the drain this morning.

Jack and Garrick came to fetch her dressed up as secret service men in corduroy pants and madras shirts.  No doubt this will initiate a change in the real secret service uniform...

Balloon greetings, posters, and jumping boys welcomed Lu back into her noisy home.  She propped herself on the couch all day; we intend to keep her that way for about two weeks.

Rain Forest in 5243

Richard and Lucy decorated the room this week with Carle-inspired cut-outs!

Today's news:  Lucy's drain will be clamped tomorrow, and she will go home Saturday if all goes well.  If she leaks at any time before or after she goes home, the plan is for temporary internal shunt placement, which would route her CSF to her stomach for a couple of months, buying even more time for her brain to close on its own.  After that, persistent leaking would necessitate another open craniotomy as the sole remaining solution.

We hate the thieving disease that presses us behind and before, but this myopia does produce a full awareness in us of the present moment.  As Jim Elliot said, we are "all here"-- a rare gift.

Angels in the wilderness

Here are just a few of Lucy's this weekend. She has minimal pain,and lots of activities to keep her busy in bed. Recent accomplishments include a Lego helicopter and a bunch of schoolwork!

Good signs day 4/10

We are happy that Lucy is settling into her routine for this session in the hospital.  

The weather has been encouraging, and Lucy likes going down into the children's garden for a quick walk.  She is so independent that she won't allow certain people to push the pole for her.  

The nurse commented that there were a few flower petals stuck to her pole when we got back from her walk.  I like that image...

She has had no further drainage since her surgery on Tuesday.  This is as expected since the lumbar drain has been replaced.  

Fortunately, she is having very few headaches which are controlled with ibuprofen and the occasional dose of tylenol+codeine.

We are expecting at least 10 days with the drain in, so that the repacked surgical site inside her nose will have the most time to heal.

Lucy has shown some artistic vigor - maternal traits for sure.  She has been drawing and dazzling the staff with her amazing detailed clay projects.  

Settling In

The last few days have been irritating, fragile days for Lucy, but she's better today, thanks to some cheery visitors and her first good sleep last night.

Here's an image for her, a friend's lime tree blossom:

There are times when all that is asked of us is just what is asked of the leaves and flowers... They continue in the plant, the sap flows up to them.

(Amy Carmichael)

Inwardly we are being renewed day by day.

(2 Corinthians 4:16)