Cici update - MRI results

Her mom published this on her blog. I'll likely stop posting her updates here but encourage everyone to visit her blog and keep this family in your thoughts and prayers.

Update 11:

Some other celebrations:
1. Cici is alive, still with us, and our family is intact, strong, and happy.
2. The support and thoughts that have come from around the world, from people that we don't even know have lifted us up - and help us remember to put our faith in humanity - we are, first and foremost, all human beings. We are forever grateful.

The MRI results showed diffuse brain injury in all parts of her brain. Parts of her brain are damaged due to the lack of oxygen she suffered while choking and in the time afterwards. This was not the worst news we could have gotten, but it was far from the best. What does this result mean for her and us? We don't know. We may not know for a while yet - maybe months. So, once again, we are in a waiting mode - we wait for her to recover and see what she can do, and what pathways in her brain she is able to reconnect or make alternative routes to, and what neurons she can "retrain" to do other functions. We don't yet know what the worst case scenario is and we don't yet know what the best case scenario is. We do know where we're starting from, however, and that's an answer in itself.

So, in a few short moments, and over the course of this past week, our entire lives have changed. This could have happened to anyone, she choked on a cracker eaten hours before and lodged in her throat waiting to move and block her airway, or a piece of canned soft fruit with us standing right there. 911 was called within 30 seconds or less after I figured out I couldn't get it out, and the ambulance arrived within minutes, maybe less. She was airlifted very quickly and got the best case possible, we were trained in infant CPR and did everything I could before the ambulance got there. We've gone from not knowing if she would survive at all to now knowing the full extent of her injuries, and while they are severe, she is alive! She is recovering! We don't know what her end state is going to be - we're going to have to wait and do everything we can to get her the best care possible.

Physically, she looks better - the swelling has gone down, and she looks more like herself. She is moving in response to stimuli, and although her movements seem reflexive rather than purposeful, she is still responding. She is able to open her eyes a bit, although is not alert. Her blood pressure is down (although goes up when she is agitated), and is coughing and gagging, good signs reflexively, as she tries to clear her lungs. She is getting nutrition, both through her IV and also directly to her stomach. The next steps are to slowly wean her from the ventilator and see if she can breathe on her own, and tolerate breathing without a breathing tube. Then, we'll see if she gets her suck/eat reflex back as well, both are huge victories, if we can get her there.

It has been a difficult week. We are hanging in there, and strangely feel a relief in knowing what challenges may be ahead of us. Through a strange (and cosmic?) connection through one of Matt's coworkers, we've met one of the doctors at the Special Care Clinic here at Children's (like PCP's for kids with special needs) and she talked with us for a long time last night, on her own time. We've now been thrust into the world of social security disability and various forms of medicaid. We are finding out how much support is out there for her and us, and it is plentiful. We are finding out what types of therapy and care she may need in the future, and preparing to adjust our lives.

There is no question. Our life is different now forever. It will be different for everyone in our family. We will have an extraordinary family. We have a perspective that few families gain. Penny and Max will learn a level of patience, tolerance and compassion that few kids learn. They will become extraordinary people because of this. Cici will have her twin sister there for her forever, and her big brother to protect her. The twin bond is strong, and she may recover more because of it. We will be there to make sure that all of our kids get the care and attention they need. We are committed to making sure they are all taken care of forever.

I am however, sad that Amendment 51 did not pass in Colorado, it means more now than ever.

So. Here we are. A new challenge for our lives, and we are committed to making our family happy and loving, and not bitter and upset. We want to be the family that serves as a source of inspiration, perspective and compassion to others. Thanks to our support network, we celebrate our lives, celebrate that we are all here, and must focus on the work we have ahead of us.