Day 51.7

I need to start this post with some sad news, Grandpa Jones passed away this morning.  I have known him for close to thirteen years, a wonderful person.  After living through this ordeal with Emerson, I can easily appreciate that he was someone who had his priorities straight.  He gave far more than he took.  He befriended everyone he met.  He moved through his life with class and grace.  A true family man, his concern was often conveyed in advice.  In respect to family differences, coming into Jessica's life wasn't easy.  I came from a small family of four, our holiday gatherings rarely exceeded five.  When celebrating the holidays, Jessica's family gatherings could easily exceed fifty, I was way out of my element.  Through his humor and charm, Mr. Jones set me at ease.  Early on, I remember at a Scottish picnic of 100 plus people he took me as a partner for water ballon toss, I'll never forget his kindness.  One could spend hours in light hearted conversation with him, especially when food was present and maybe a cocktail to.  He was very particular about the shade of his bourbon and water, only perfect if on the rocks with a finger mix.    He really was a joy to be around, life seemed more trouble free when with him.  I'm grateful for the time I had with him and I know that I'm a better person for having known him.

Emerson has exceeded expectations this week in terms of her recovery!  Dr. Keen is very optimistic that Emerson will continue to recover well and said that we have no reason to think that she won't make a full recovery given that she continues to improve so well everyday, no promises of course.  It is very likely that Emerson has dodged the G tube surgery as well as she no longer yanks at her feeding tube.  Emerson is moving her jaw more but her lips remain tightly closed.  Elizabeth, her speech pathologist, has gotten Ems to eat open and eat a bit of jared baby food.  Emerson swallows in a three step delayed process but she seems to be getting better all the time.  Occasionally,  she will open her mouth more to.  We had some great success today with Emerson in a prone position so that gravity would help her jaw open.  I would post some video to youtube but the wireless does not permit the transfer - I will work on this.  Hard to imagine that she will likely not need the G tube, I think that most of us thought it was a certainty.  Elizabeth has been working with Emerson three times a day to get this progress.  She is currently only getting feeds through the NG tube from 5 pm to 6 am. at a rate of 54 cc an hour on a 30 calorie formula.  We just stated this last night to help therapy during the day.  Ems needs to start eating by mouth during the day to help her reach her calorie goal.     

Emerson can sit and hold her head up really well, she can last longer than five minutes as she makes it look easy.  Haley, her PT, challenges her a ton and works with her two times a day.  Em, is also moving her arms and legs a ton more.  She can now maraca with her left arm as well.  Tina, her OT, made her a night time brace for her left arm and hand to help stretch her muscles.  Her left hand can still be a little vice but it has really improved from where it was - Kim, you would be proud of her.

Emerson has tracked people several times.  Dr. Keen believes her cortical visual impairment to be temporary.  We hope her intermittent hearing is temporary as well.  She is still on some serious drugs and she fatigues easily.  We were loaned a book about CVI so that we can make observations regarding what works well for her vision so that we can provide input to the therapy team to enhance treatment.  It is a huge advantage for Emerson's recovery that she has two actively involved parents.  I do feel that I must return to work soon.  They have been very understanding.  I do feel more comfortable with the idea as I see her improve.  Once I know Jess is in a better place I may rejoin the working world.  

Dr. Keen put Emerson on Atarax, which has significantly helped her stop itching her nose, face, ears and head.  Haley said it is as if she is working with a different kid as Emerson is much more focused without the the mental distractions.

It has been great to see Emerson back in her street clothes, here she is STANDING with some assistance.  I started this post a long time ago.  Lots to do around here.  I hope that we can post nightly.  It is thought that we will be in inpatient therapy for a month and a half more but this is a very rough estimate.