Tuesday, October 13, 2009
Baby Emma Update - 10.12.09
Below is an update from Emma's Mom, Sophie that we received last night. How wonderful it is to see the words "Smiling" and "Emma" together : ) As Sophie points out, the road ahead is sure to be a long one, but we will all rejoice in the blessings of each day & never give up hope - "Emma is a fighter and she won't settle for anything less than great."
Day 24. Still in the PICU but hopefully moving to rehab soon! She still has a couple of IV drugs and levels to monitor here in the ICU.
Emma continues to amaze us all... Every day she shows us that she is not cool with this 'dead brain cell' stuff... she won't settle for that - she wants to show us all that she is a fighter!
Today was a good day. Emma smiled many times throughout the day as we stuck our tongues out to her and smelled her 'stinky feet'. Our super cool nurse got a Radio Flyer Wagon for us to wheel Em around the ICU... it took three of us - Ty to pull the wagon, Super Cool Nurse to push the IV Pole thingie, and me to hold the wires and tubes up, but she loved it. It put her right to sleep! It was much needed sleep as the past few days have had some rough 'no sleep' patches... she is slowly coming off of some pretty heavy drugs, so she is on Methadone and Adavan to help her withdraw. This is probably the hardest thing to watch but as it makes her anxious, shaky and fussy. Speaking of drugs, goodness, have you ever see what phenobarbital looks like (anti seizure med)... it's nuclear green... definitely not my favorite to watch her get.
Emma got the 'ok' from the docs to begin pureed foods - she had some yummy applesauce this morning along with a bottle, while carefully propped up in a highchair! Tyler is wondering when she can resume eating steak and potatoes!
We are working with her right limbs as they are very weak. The left side of the brain (which appears to be mostly dead on the CT scan) controls the right side of the body, so everything has been affected, but we are so hopeful and staying positive that we will be able to retrain her brain to take on some of these tasks on the right side instead. As for her vision, we don't think that she can see, or at least receive the message that she can see, anything on her right side. If I waive my hand to her right, she doesn't follow. We already know that the retinal hemorrhaging alone has damaged her actual vision, but the brain damage has affected the 'messages' coming from the eye to the brain on the right side. We are starting from scratch... Emma is very weak and will need to relearn how to sit up, roll over, etc... and to think she had just started walking... that will come back - I am sure of it! She WILL walk again!
Her cry is slowly coming back - it is still very weak and she still sounds like a newborn. She has lost her vocabulary. She used to be such the talker... The left side of the brain controls speech and the way you understand speech.
Ava got to see her little sister via Skype yesterday... she was SO excited! She has been saying prayers at school for her little sis. Her teacher is awesome and has been sending me little video messages of her during prayer time. Ava really misses us. She just wants 'normal' back. Her 4th birthday is in less than two weeks... her birthday party will have to be put on hold for a couple of months... ughhh I hate that this affects her... it's not fair to her.
We love our little Emmy so much... she truly is a miracle! Thank you God... The road ahead is a long one, we know. We will never give up hope - she is a fighter and she won't settle for anything less than great.
Thank you for every prayer, thought, encouraging story, email, phone call... we are so amazed by all of they love Emma has been getting - from many of you beautiful people who we don't even know in person. We are so thankful for all of our friends, neighbors, family and good people out there who are including us in their prayers. Thank you.
Sophie and Tyler