Dear friends, family, colleagues, neighbors & our entire support network, it has been quite a while since I've updated here on Nora's site, I have thought about it and knew that I should but for some reason it was hard.  That may seem ironic as there is certainly ongoing positive progress to report and yet whenever I sit down to type this I am hit with reflecting on the enormity of the experience, & the overwhelming spectrum of emotions that Nora's journey has brought with it over the last 3+ months.  I know that I speak for our entire family circles when I say that we are filled with such deep gratitude for the miracle of our sweet Nora and yet there is a heaviness and a weight from simply having walked such a treacherous journey.  It is hard to describe.  It is again a good reminder to be constant in prayer for those that are going through trials, struggles, illnesses, traumas, loss etc.  It is also  a bit of a chastisement to never, ever take anything for granted.  Always take time to say I love you, tell people what they mean to you, celebrate the little things in life as well as the big things.  Things like this are also a nudge to remember that this earth is not our home, loved ones can be gone in an instant and in fact our earthly life is really a spec of time compared to eternity, it's easy to get caught up in this life when what really matters most is where we spend eternity.
I read a quote today that said, "Perhaps our eyes need to be washed by our tears once in a while so that we can see LIFE with a clearer view again" by Alex Tan  I thought that quote held some great wisdom.

Now, onto all the great things that we have to share in Nora's journey....
She completed her outpatient PT & OT just last week & finished up like a champ!  In one of her last therapy sessions her therapist was holding her hand to which our sweet/sassy girl stated "I don't want you to hold my hand"! :) She also told the therapist that she didn't need to stand so close behind her while she was doing some walking on uneven surfaces.  Her appetite came back right after being weaned off of the Keppra & it has stayed very strong (back to her normal self).  She continues to wear her super cute pink "glasses" with the tape on them as this is to help try to get her eyes to keep from turning in and to strengthen her eyes in working more in concert together.  She has had intermittent appointments to check on the progress of her eyes and they are very pleased that she is progressing in the right direction and continue to assure us that it simply takes time (slow and steady wins the race they say).  Once they feel that she is at the right point with her eyes, they will then need to do some "intense vision therapy" which we will learn more about when that time comes. She and Mara are loving the opportunity to play outside when it is nice and watching them run around full speed you would honestly never know that anything happened, oh the resilience of children!

Before wrapping up here, I want to say "Happy Nurses Week" (May 6-12) to all of the nurses & a special wish to all of the nurses that were involved in caring for Nora and our entire family through this journey.  You were there when we cried, your were there when we laughed, you were there when we didn't know if we could get through another minute, hour or day.  You comforted us, you listened to our stories and asked about what Nora liked/didn't like, you opened your hearts, your prayed for our sweet miracle girl and you will never be forgotten and we will forever be grateful.   Nursing is a very precious and privileged calling that can be incredibly demanding but equally rewarding.  May each one of you be richly blessed for answering the call.