Email to Tracy on behalf of Sara

Kristina Baker to Tracy, Sara
show details May 3 (2 days ago)


Hi Tracy,
Sara asked me to send you an update.

She currently has her trach out and a "button" keeping her stoma open. It is plugged so that she breathes through her nose and mouth. She has been clearing her own secretions and swallowing just the way she should. It has also allowed her to get back the ability to make sounds. She vocalizes like she did when real little. Sounds so cute. She also makes sound when she laughs. It is the greatest sound in the world to hear her laugh now.

She is moving her head completely side to side, back and forth, and chin to chest. She can stabilize her head and hold it up for short periods of time. She works it constantly and gets stronger every day. Whenever she coughs now she puts her own head back on the pillow or head rest. She also "hugs". If you hug her she will bring her head forward and put her chin on your shoulder and her head next to yours. She refuses to kiss anyone except a boyfriend. Don't worry...she doesn't have one of those.

She shrugs her shoulders and has started lifting her arms. She has been known to swing one up and smack me upside the head when I scrub her face or wipe her nose. The other day I picked on something on her shoulder and she moved her head and bit my hand. I laughed so hard. Called her Oksana from Borat (the chicken.) "be careful, she bite"... Whenever I have to do something unpleasant to her (in the course of care - like scrub a diaper rash or empty a boil on the back of her neck) I let her bite my finger afterwards. Kind of her version of "ouch!" and it makes her feel more empowered that she can affect me too.

The computer is great but still hard for her to do much more than a few words and sentences. Emails are nearly impossible for her to initiate and take the most amount of effort. Anything requiring her to think ahead and organize what she wants to say is very difficult. She also has short term memory issues still, but they have improved with time. Her neurologist said it would take at least two years just to heal the initial brain injuries - per injury - and she had three major ones.

Sara doesn't want you to have access to the blog yet. It is really her random thoughts and questions that come to mind these days. There is a small circle of people who are in the blog who respond to her posts and answer her questions. She wants you to make an effort to know her now - face to face - before she opens up the blog. You have to know that she has vented there about you in the past, as well. When something would hurt about your relationship, or lack thereof. I think she wants to make sure you guys are good and you won't criticize her or get mad at her for her thoughts. (you can be a bit intolerant and she can't take anything less than full support and acceptance of her). I've had to remove people from the blog who got too personal and lashed out at something she said, or judged her. Yes...I am protecting her from the harsh, cruel world - her diagnosis and prognosis is enough reality for one lifetime)

She will be a bit guarded in her dealings with you. She said so herself. "I just can't take another disappointment". That's from you or anybody else.

I know you probably hate that I am giving you this update, but that's the way it is. That email she sent you took her over an hour to do and she was emotionally and physically drained from it. It was probably three sentences, but it takes everything she has.

She understands that you don't have a job. She asked me to buy you a prepaid gas card so you can come visit her. That will be in the mail this week. Afternoons are the best time to come see her - after 1pm. Let me know if you are planning on coming, so I can let her know and put it up on the board for the nurses.

She does love you and knows about and appreciates everything you and Denise have done by keeping the insurance going. She knows it saved her life and allowed me to bring her home.

Come meet Sara. And get to know her NOW...for the absolutely incredible young woman that she is today. She inspries everyone who meets her.

And, regards your normal communication with your family and they way you've always been...that's fine. She's your daughter. Be different for her. She really is worth it.

(Hell...maybe you can even help Dynavox figure out the channel changing b.s. they can't get right. It would be great if she could control some of her own environment...I couldn't explain it to them...)

I have copied Sara on this email so that she knows exactly what I said.