Monday, May 31, 2010
Sunday, May 30, 2010
Saturday, May 29, 2010
Thursday, May 27, 2010
Wednesday, May 26, 2010
Tuesday, May 25, 2010
Sunday, May 23, 2010
Saturday, May 22, 2010
Friday, May 21, 2010
Wednesday, May 19, 2010
Monday, May 17, 2010
Sunday, May 16, 2010
Friday, May 14, 2010
Thursday, May 13, 2010
Hard Decision
After much thought and research I have decided to taper off of the antidepressant i've been taking for years. The prospect scares the hell out of me - especially with my family history - but I think its the right thing to do for me. I talked to my kids about it last night and they support my decision, but are concerned.
I've thought about it in the past, but now it has become somewhat necessary. I have lost my health insurance (and the second coverage for Sara and Michael) and can no longer afford my medication. So, there it is. It forced the decision.
I will taper off as much as I can. I've read that this is a horrible drug to get off of. I hope it is truly not the case.
I dropped my dose by 1/3 this morning. I'll stay there for a couple of weeks, then another third. All the documentation says that the last 75mg are the hardest to get past and off of.
I'll know by tonight how this first drop is going to go. So far just a little headache, which is to be expected. If its going to get worse it will be later this evening, as the medication half life is up.
I'm going to talk to an herbalist to get some assistance with countering some of the side effects, but I'm not stopping until I'm off of the effexor xr.
I've thought about it in the past, but now it has become somewhat necessary. I have lost my health insurance (and the second coverage for Sara and Michael) and can no longer afford my medication. So, there it is. It forced the decision.
I will taper off as much as I can. I've read that this is a horrible drug to get off of. I hope it is truly not the case.
I dropped my dose by 1/3 this morning. I'll stay there for a couple of weeks, then another third. All the documentation says that the last 75mg are the hardest to get past and off of.
I'll know by tonight how this first drop is going to go. So far just a little headache, which is to be expected. If its going to get worse it will be later this evening, as the medication half life is up.
I'm going to talk to an herbalist to get some assistance with countering some of the side effects, but I'm not stopping until I'm off of the effexor xr.
Wednesday, May 12, 2010
Tuesday, May 11, 2010
Friday, May 7, 2010
Some readers removed
Since the reader who violated Sara's privacy and divulged part of her blog wouldn't voluntarily identify themselves, we have removed a number of readers. They are being sent emails to verify who they are and how do they know Sara. I am uncomfortable having to take that kind of action, but access to the blog was conditioned upon people respecting just a couple of basic rules - not discussing or sharing the contents of her blog with anyone was the primary one.
We all get to have a unique look into the daily random thoughts of Sara. We get to share in her ups and downs through the only medium she has for an outlet. It is like getting to read someone's diary every day, and a peek into the mind of someone who is locked into their own body. You just have to remember that even though she is the same Sara (quirky, silly, wildly intelligent) that she has brain damage from 3 injuries to her brain. It changes a person and it has certainly changed her. But it also means that the collective people who have access here are also being asked to protect her and help her along her road to recovery - as much recovery as she can get.
The circumstances over which she lost the last chance with Tracy are unfortunate, but not altogether unforseen. He was going to find a reason to stay away. Just so happens that Sara inadvertently gave him one and someone decided to play "I got a secret" and share outside the blog with someone who had no business knowing. It was hurtful, to Sara and to Denise. But the end result - Tracy leaving Sara - had already happened, but he hadn't said goodbye.
So now she knows. And we know. And we can circle up around her and lock arms around her.
We all get to have a unique look into the daily random thoughts of Sara. We get to share in her ups and downs through the only medium she has for an outlet. It is like getting to read someone's diary every day, and a peek into the mind of someone who is locked into their own body. You just have to remember that even though she is the same Sara (quirky, silly, wildly intelligent) that she has brain damage from 3 injuries to her brain. It changes a person and it has certainly changed her. But it also means that the collective people who have access here are also being asked to protect her and help her along her road to recovery - as much recovery as she can get.
The circumstances over which she lost the last chance with Tracy are unfortunate, but not altogether unforseen. He was going to find a reason to stay away. Just so happens that Sara inadvertently gave him one and someone decided to play "I got a secret" and share outside the blog with someone who had no business knowing. It was hurtful, to Sara and to Denise. But the end result - Tracy leaving Sara - had already happened, but he hadn't said goodbye.
So now she knows. And we know. And we can circle up around her and lock arms around her.
Thursday, May 6, 2010
Wednesday, May 5, 2010
Attention: Denise co-worker
Kindly identify yourself to me so that I may remove you from the blog.
Your sharing Sara's private thoughts were the last straw with Tracy and have cost her any hope of a relationship with her birth father.
Sara doesn't really think Denise is a bitch NOW...only that she HAS been bitchy in the past. There's quite a bit of history that not a lot of people are privvy to - and I'll only air here if I have to. Forget all the appreciation Sara and I have tried to express to Denise - all she ever hears or remembers are the negatives.
And now her birth father has chosen pacifying his current wife over knowing or helping his own child.
Sara has brain damage and short-term memory issues. The last almost 3 years she has issues with. And, it sucks for her because she doesn't always remember stuff and says something that comes around to bite her in the ass. Like this. She remembers clearly the bad stuff from her childhood with Tracy and Denise, but has to be reminded of the ways they (she) has shown that she cares for Sara.
You should have seen Sara's face when I played her the email from Tracy. Now she has no hope of a relationship with him or Denise, and no way to fix it...EVER. Nothing she could ever say now would be good enough for either of them. Was it worth it?
You betrayed Sara's trust, embarrased Denise, infuriated Tracy, orphaned Sara from her father and Denise, and may have cost Sara the Kaiser healthcare she depends on(which is Denise's). Those are just the first ripples...
Your sharing Sara's private thoughts were the last straw with Tracy and have cost her any hope of a relationship with her birth father.
Sara doesn't really think Denise is a bitch NOW...only that she HAS been bitchy in the past. There's quite a bit of history that not a lot of people are privvy to - and I'll only air here if I have to. Forget all the appreciation Sara and I have tried to express to Denise - all she ever hears or remembers are the negatives.
And now her birth father has chosen pacifying his current wife over knowing or helping his own child.
Sara has brain damage and short-term memory issues. The last almost 3 years she has issues with. And, it sucks for her because she doesn't always remember stuff and says something that comes around to bite her in the ass. Like this. She remembers clearly the bad stuff from her childhood with Tracy and Denise, but has to be reminded of the ways they (she) has shown that she cares for Sara.
You should have seen Sara's face when I played her the email from Tracy. Now she has no hope of a relationship with him or Denise, and no way to fix it...EVER. Nothing she could ever say now would be good enough for either of them. Was it worth it?
You betrayed Sara's trust, embarrased Denise, infuriated Tracy, orphaned Sara from her father and Denise, and may have cost Sara the Kaiser healthcare she depends on(which is Denise's). Those are just the first ripples...
Response from Tracy
Tracy L Baker to denise, me, gloryphoenix
show details 4:17 AM (5 hours ago)
You and Sara do not have to worry about me coming to visit. It is not going to happen.
There are a number of reasons, but he only one that matters is her calling my wife a bitch. You see, although I do not have access to the blog site, one or more of Denise's co-workers do. She was informed of Sara's "thought" about her while at work one day, how embarrassing.
Continue to consider me intolerant, I truly could not care less; but I will not stand for her insulting my wife . . . again.
Congratulations on raising a world-class ingrate.
Goodbye
show details 4:17 AM (5 hours ago)
You and Sara do not have to worry about me coming to visit. It is not going to happen.
There are a number of reasons, but he only one that matters is her calling my wife a bitch. You see, although I do not have access to the blog site, one or more of Denise's co-workers do. She was informed of Sara's "thought" about her while at work one day, how embarrassing.
Continue to consider me intolerant, I truly could not care less; but I will not stand for her insulting my wife . . . again.
Congratulations on raising a world-class ingrate.
Goodbye
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.
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.
Tuesday, May 4, 2010
Monday, May 3, 2010
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