Mom and Dad's Update

Courtney has been very active the past 2 days. While sitting in bed and in her wheel chair she has been throwing her legs over the side. Courtney has also been leaning forward - lifting herself from the waist up off the bed and rolling from side to side.

Because of all that activity, and because Braintree never wants to restrain patients Courtney is now in a 'low' bed. It looks very much like a hospital bed but it sits near the floor similar to a toddler's bed. There are large soft mats on either side so that if Courtney does try to get out of bed she will not hurt herself.

It is obvious that Courtey is very frustrated that she is not walking and talking. We have explained to her that the muscle tone (tightness, spasms, spasticity) has to be addressed before she will be ready to walk - otherwise she would be walking on her toes and hurting her ankles and other joints.

Courtney can speak but the valve that is currently in her trachea doesn't allow for the normal amount of air that passes through our mouths. This feels awkward causing Courtney to force air through her mouth which then comes out in a hoarse tone.

Tomorrow Kathleen, speech therapist, will 'cap' the trachea as it was at RIH thereby allowing all air to pass through Courtney's mouth. When she does make sound it will be her natural voice.

The fact that Courtney is now aware of her deficits is a huge step forward in the process. Her frustration will motivate her to do the hard work she needs to continue her recovery.

Courtney's first week at BRH has been a success considering that she wasn't moving around as much, wasn't eating or swallowing anything (barely opening her mouth) and wasn't communicating just one week ago.

Courtney will nod yes and no to questions and is now making choices about wardrobe. Both yesterday and today I showed her 2 pairs of pants - then 2 shirts - each time she stared at the one she wanted. Then I switched positions and asked her to look at her choice - she made the same choice each time. This morning she added a firm nod leaving no doubt about her choice!

Courtney's genuinely affectionate and loving side is coming through as she is frequently leaning forward to give us kisses. Tonight I kissed her on both cheeks and said 'we'll kiss like Europeans' - this made Courtney laugh - it was a great sound!

We believe that Courtney's memory is very good. Today when I showed her pictured of her holding Jessica and Audrey Laffey in her lap she leaned forward and kissed each face in the picture. She stared lovingly at the picture several times during the day.

Now that Courtney is so much more aware it's a good time to talk about visiting.

Visiting hours during the week are 12-1 and 4-8. Weekends 12-8.
In our experience 3-5:30/6:00 are the best times during the week because by 7pm Courtney is wiped out from all the work she's done all day.
12-1 is okay during the week too.

Weekends from 12-5:30/6:00 work best.

A few things to remember when visiting:

Courtney does have therapy on the weekends and so you may have to wait to see her.

She may be very tired and sleepy - therefore the visit could involve just sitting with Courtney.

Overstimulation is not good - so a crowd of visitors is to much for Courtney to handle. If you come with a group it's best to have 3-4 people in the room at a time.

Avoid using loud voices - she responds best to soft soothing voices.

It's okay to show emotion - sometimes when Courtney sees a good friend she cries -it's okay for you to cry too. We always say 'it stinks that you have to go through this Courtney, but we cry happy tears too because you're doing so well."

Every adult who has visited Courtney has struggled through seeing her less than her energetic self. We all have difficulty reconciling our feelings. If you have young children we strongly discourage you from bringing them to see Courtney. They simply can not reconcile why she is not the bubbly Courtney she usually is. Courtney would be the first person to say "don't upset children by bringing them into a situation they can't handle."

If you ever have any questions about visiting or Courtney's progress feel free to post it on comments or call my cell phone.