Hi Everyone,

We weathered another tough week. It was not only rough on us but two of our nurses as well. Our regular nurse (one day a week) almost quit last Wednesday, Our new nurse (in training) cried on Friday (as did Caitlin and I) There are rough days and weeks to our new normal as you all know but with the added stress of new appeals, Corey’s fatigue for therapy and no closure to this new direction, we’ve been in rough waters.

Caitlin and I split this weekend to give each other a full day and night off. She took Corey to the mall yesterday as I spent the day with friend at Longwood Gardens and then had dinner out. Today Caitlin is out with her boyfriend. Corey and I spent the day finishing laundry and cooking for the upcoming week. Thank goodness we could share the responsibilities of the weekend and step away to regroup.

Part of today was discussing therapy. Corey and I watched old videos and talked about her progress. We talked about how hard it is to keep working when you don’t know how much has been accomplished vs. how much more needs to be achieved.

Our conversation is timely as today I was also preparing for our weekly appeal. The clinical manager has asked for specific measurable functional improvements we see at home that are directly related to the exercises reported by our Bryn Mawr therapy team. *they are “only” asking for documentation from August to present day.

I began to calculate the measurement of time;
August 1st to present day = 14 weeks; 51 billable hours
(this does not include the home therapy or pool hours)

The following are some of our documented functional improvements;
– walking is more cohesive
– beginning to stand unassisted
– pulling herself up to utilize the double arm platform walker
-propelling the walker independently including maneuvering a turning radius
-lifting her legs to get in and out of the car
-riding in a car without a wheelchair
-raising her left arm unassisted by her right arm
-applying deodorant (with the left hand-new this weekend)
-pulling up her socks from her ankle
-struggled but put a glove on her right hand using her left hand as the primary (another new 1st this weekend)
-writing grocery lists and journal entries
-beginning to recognize time with an analog clock
-texting on my iPhone to her brother and sister (also new this week)

Last week the clinical manager actually suggested that the overall length of time it’s taken Corey to show functional improvement suggests that perhaps “it hasn’t been affective enough to show dynamic changes of functional improvement”.

Let’s first consider the ‘overall length of recovery’
10/22/2010 – Corey’s first day of rehab to present day = 159 weeks 2 days
Calculating her length of stay as inpatient receiving 18hrs/week + the hours of home therapy as well as outpatient therapy averaging 15hrs/week = approximately 2,634 total hours.

Secondly, let’s highlight Corey’s initial evaluation for admission to the acute care hospital. She almost didn’t register on the Glasgow Coma Recovery Scale; she was barely a 1 out of 8 – most hospitals will not admit a patient at a 3.

Finally, how can you not consider her starting at near death, a coma, full body paralysis, incontinence, being fed and hydrated by a feeding tube and not speaking to walking, talking, moving all limbs independently and eating/drinking independently; the transformation is the definition of dynamic change and functional improvement!

Corey will not be skipping rope this week nor is she grocery shopping, managing money, cooking independently or resuming her job at the candy store…YET! Consider this final analogy; an infant takes almost 2 years to walk, talk and eat independently. Almost 3 years to become continent. Almost 5 years to dress themselves. Almost 6 years to read and write affectively. Almost 8 years to understand the value of a dollar and 16 years before they can apply for a job all without a brain injury. I say Corey’s overall length of recovery time has her ahead of most “normal” people!

Joking aside, please continue to pray for me as Corey’s advocate. More importantly continue to pray for Caitlin, too. She loves her sister and this is very difficult on her as she tries to live the “normal” life of a 23 year old. We both need more patience, perseverance and stamina. There have been 2,634 professional billable hours in the last 159 weeks. In actuality, there has been at least double that in family dedicated hours. We are still trying to figure it all out.

Tomorrow we begin a new week with new battles. We need each of you to hold onto our sails…full speed ahead, **** the torpedoes! xoxo