Wednesday, January 27, 2010

The Sleep Over

Lisbeth is so eager to sleep over, she arrives dressed in her jammies (she is also wearing her pink polar fleece Little Milkweed jacket that I made for her many moons ago...).
Right away she has aches and pains, some negative perseverating, and an absence seizure (otherwise known as a petite mal seizure, shown here. This involves staring, some drooling, and non-responsiveness, but not a full loss of consciousness as is the case with her tonic clonic, or grand mal seizures).
We work on a fun project while Daddy cooks supper...
Glad of it!
Dad's menu:
Baked potatoes with sour cream, grilled steak, mushrooms and onions, and a green salad. Vanilla ice cream for dessert. All enjoyed under the watchful eye of the new Little Milkweed angel...
As soon as dinner is over (for Lisbeth - it doesn't matter if we are still eating!) it is BEDTIME.
See, Mom and Dad? Need to get the Sweeter Bear, need to take the bedtime medicine now, and put on the cream, and brush the teeth, mmmmmmm hmmmmmmm, and get the water with ice, LOTS of ice, and do the heating pads in the microwave, and rub the back, and read the bedtime story, mmmmmmmmmmm hmmmmmmmmmmmm...
Bedtime Medicine. Four times a day Lisbeth swallows a handful of pills. She takes 4 anti-epileptic meds, and an anti-psychotic: Depakote, Trileptal, Zonegran, Vimpat, and Risperdol. She also routinely takes PRN lorazepam. (Lisbeth has meds in liquid form for times when she is unresponsive and can't take meds orally. There are also times when Lisbeth is too unresponsive to drink and she can't take liquid meds - at these times she is at risk of becoming dehydrated and must go to the ER and be given her meds and fluids intravenously).
Lisbeth can't read, but she loves to be read to. She likes the same stories over and over. This book has a character in it named Lisbeth, so it is a real favorite!
Lisbeth does a good job brushing her teeth. When she is clear, she can do these tasks. When she is postictal and not clear, she needs help with hygiene, and getting dressed and undressed.


A conte portrait that I did of Lisbeth asleep post surgery in 1992 at Boston Children's Hospital.

Lisbeth is 28 years old, but in many ways she is still the 6 year old girl that she was at the time of her traumatic brain injury and the onset of her seizures in 1988. We transitioned Lis to her own home when she was twenty-one, but she still comes and spends the night about once every two weeks, and when she does, she needs the same sort of predictable ritual and routine that a young child requires. Even more so. She needs constant attention. Her moods can turn on a dime. Often she will not sleep through the night. Sleepovers are a challenge, however, we still do them often, because even with all her ups and downs, Lisbeth delights in being back home with us. And the wonderful thing is, she is always ready to return to her home the next morning, and impatiently waits for her helper to come and pick her up! In this way, she is a very real grown up. THIS way!
video

4 comments:

  1. Oh my--I'm exhausted just reading this! I love that drawing you did so many years ago! That was a sad time too with hopes so high about the surgery.

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  2. Hi - I am new to your blog - what a beautiful daughter you have. I used to work with clients with a variety of challenges and had a few that through illness or injury as children had developed illness/disability/challenges. It is brilliant to read Lisbeth's story and see that she so obviously has your love and support - the people I worked with were quiet often left by their families for different reasons. What a great family you are and Lisbeth is such a great artist!

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  3. Hi Sue

    Yes, I will be posting about our stays at Children's Hospital very soon.

    xo

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  4. Hi Katy

    Thankyou for your kind remarks! And bless you for the work you've done! Yes indeed, Lisbeth is a great artist! :*)

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