It has been a physically and emotionally exhausting past few days - but all in a good way!

Wednesday was Anna's one-year anniversary of arriving at Lorien Bulle Rock.  Wednesday was also her last full day there before transferring to Kennedy Krieger.  We said our thank you's and set up a snack table to tell them all how much we have appreciated their love and concern over the past year.  The aides, nurses, staff, and administration have treated us wonderfully.  Thank you for that!  Special thanks also to the respiratory unit who worked with Anna from full ventilator to pressure support to trach collar to capping the trachea tube to being decannulated over the seven months from last May to December.  Even though the respiratory unit closed down in January, they were with us for the entire time that Anna needed them, and we certainly missed them when they left.

Thursday morning, we arrived at Lorien at 6am, grabbed the last couple of items to clear out Anna's room, and headed down with her to Hopkins in Baltimore to get her casts removed.  That appointment went without a hitch.  The doctor was pleased with the range of motion in Anna's feet, and he was comfortable with how the surgical incisions were healing.  After setting up a follow-up appointment, we were out the door by 10am and rolling Anna over the couple of blocks to Kennedy Krieger.

We're finally here.

It has been months and months of appointments, consultations, evaluations, and logistics to get us here.  Plans have been set in place and then changed and then changed again.  Anna's hospitalization in March pushed everything back a month and obtaining approvals through insurance had kept the timing in flux right up to early this week.

But now we are here.

"Kennedy Krieger Institute is internationally recognized for improving the lives of tens of thousands of children, adolescents and adults with neurological, rehabilitative or developmental needs"

This is where Anna needs to be.  To improve her life and address her neurological challenges.

Thursday was a series of "meet & greets" with various members of her Team.  From physical and occupational therapists to doctors, social workers, activities staff, and others.  One of the wheelchairs they had available was adjusted and fitted for Anna and plans are in place to order a custom-made one next week.  Anna's food and medicines were started, and Karen spent the night just to make sure Anna was settling in comfortably.

Friday began bright and early with sessions for occupational therapy and physical therapy.  They continued their evaluations of Anna, measured her range of motion, talked with us about her physical abilities and limitations, and started different elements of therapy.  We also had a first meeting with the speech therapist and then a two-hour session with the social worker, who began by looking at Karen and me and saying, "I'm here to make sure the two of you are OK."  Wow, tears flowing there.  

Did I mention that the session with the social worker lasted two hours?  Yeah, we had a lot to say and a lot to share about the past year.  The social worker had a lot of comforting answers and shared various resources that reveal how much they recognize our needs in addition to Anna's needs as we journey through this.  We immediately felt valued and included.

After the therapy sessions, Anna had a free afternoon, so we went down to the activity room to see what that is all about.  It was wonderful.  They engaged Anna and a couple other young patients with games and crafts.  They played Set, one of Anna's favorite games, helped her paint (we'll have to call that modern art), and played a princess matching game.  Even though Anna can't communicate choices or preferences, they spoke to her and included her as if she could and played with her the entire time.

Around 3:45, Anna seemed to be getting tired, so we went back up to her room.  This is a similar timing for the afternoon as we are used to - back in bed and cleaned up, ready for her 4pm food and medicines and enjoying a time to rest.  I had thoughts of taking her back down to the activity center for their evening movie at 6pm, but Anna was wiped out (so was I!) and I didn't want to push her too much, so we just got settled in for the evening.

We don't know how long Anna will be here.  They gave us an initial expectation of about a month.  But just based on this first day and a half, we have high hopes for improvements in Anna's neurological condition over that time as well as her level of consciousness, awareness, and communication.

Many times, when we have mentioned Kennedy Krieger to others, they have said, "Yeah, I've heard great things about them."  Now, finally, we are starting to personally get a sense of those great things.  The Lord works miracles through the hands of men and women.  We pray that He will use these folks at Kennedy Krieger to work a miracle in Anna.