Ellie never stops surprising me. This morning is one of those times where she just makes me so happy I tear up. She has had a few rough days. We are in food trials again and the lamb one is not going to well. More on that for another post. Needless to say, she has an upset stomach and has been feeling poorly. Last night Dave was in and out of her room to comfort her. (I got to sleep having done it the last time).
Recently Ellie had figured out how to make the letter S with her left hand. We were sitting on the couch and she was obsessed with one of the Maisy (Lucy Cousins) books and she put her thumb on the letter S and then made the sign for S. Of course I was thrilled and heaped on the praise and excitement.
The ASL letter S is a closed fist with your thumb crossing the other fingers. And she figured out how to do this on her own. So I realized when she showed me this last week that maybe she would be able to do the other closed hand letters - like A and then T, M, and N. So I showed her those. She was so interested she even let me help her make the hand positions. Since then she has been practicing making A, T, M, N and S and we added B too. The first time she tried to make the B (which is an open hand with the thumb crossing the palm) she could not get her hand open so she used her other hand to pull her fingers up. Does that just want to make you cry!? I did. She tries so hard and is so tenacious.
So add B to the finger spelled letters she can do. Every night when we sit on the couch she wants to show the brunette princess on her princess blanket these signs. I hold up the blanket so she can see the princess's face and she makes the signs and the princess is always really impressed. (This is our way of dong imaginary play - lots more to describe here about how we got there - but in another post).
Anyway - so it's been an amazing thing with her initiating all this finger spelling.
This morning after the rough night I hear Dave and Ellie on the monitor. Ellie wants to sit up and Dave puts her on his lap and Ellie starts finger spelling. I hear Dave vocalizing the letters she is making as she does it. I don't know why we do that - we just do - we lend her our voices to reiterate that we understand what she is doing, reading, now finger spelling. And I hear Dave say, "M - A - M - A. You spelled Mama!!! Mama is going to be so happy! You're my little genius!"
Yep, he called it right. Mama is very happy. When I picked her up this morning, she finger spelled M-A-M-A first thing. Sigh. I can always count on Ellie to burst my heart open in the space of seconds.
Friday, August 08, 2008
Wednesday, July 30, 2008
3 Beautiful Things All About Ellie - of course
1. I accidentally tickled Ellie behind the knee when removing some adhesive from the latest and last (for now) round of casting. She laughed and then put her hand on my ribs and tickled me back with a big smile on her face. How did she learn that? Now one of her favorite things to do is tickle Mama and she does it just when I am most in need of a laugh.
2. Ellie especially likes the blanket on the couch. It's purple and cool to the touch as it's smooth cotton. She insists on having it over her when she falls asleep on us even if it's hot out!
3. Ellie's big hiccuppy belly laugh when the duck finishes baby van goat's painting.
2. Ellie especially likes the blanket on the couch. It's purple and cool to the touch as it's smooth cotton. She insists on having it over her when she falls asleep on us even if it's hot out!
3. Ellie's big hiccuppy belly laugh when the duck finishes baby van goat's painting.
Saturday, July 19, 2008
Where's Mama's Ellie?!
Botox Day, keeping spirits high before the procedure.
Big girl watching her videos in the car.
At the fairy party in May, checking out the fairy flower crown making station with Dada.
Notice the puckered lips? Hungry girl biding her time with the Wiggles before dinner!
Big girl watching her videos in the car.
At the fairy party in May, checking out the fairy flower crown making station with Dada.
Notice the puckered lips? Hungry girl biding her time with the Wiggles before dinner!
Thursday, July 17, 2008
Parenting a Nonverbal Child
Sarai asked me some interesting questions in her comment on my blog, "Understanding Lady Muck". They were such good questions I wanted to answer them with a whole post.
Here is what she asked:
"Your blog makes me think a lot about how difficult it would be to parent when you have a aware but non-verbal child, especially your first child, so you have no point of reference. How much I take for granted, not just the obvious things!!
I do wonder how Ellie's awareness but not able to verbalize influences everything. So she has "typical" (there's that word again) five year old feelings, but not typical ways of being able to express herself. How DOES she express her feelings? Do you have a word board for "happy" "surprised" "angry" "frustrated"? Do you just go by facial expressions, and suggest the name of the feelings for her? Does she use sign language to tell you? Sorry for questions and not suggestions."
These are well timed questions as I have been beefing up my communication skills because of all the work I have been getting. One of the resources I have been using is the Toastmasters International website.
One of the things they stress in their online literature is how important body language is in communication. In some communication theory, the heuristic is that there is the "message" which is the words you actually say. And then there is the meta message which conveys your true intent or tone and that is all done in the body language including the pitch and volume of your voice as well as your posture, facial features, direction the eyes are looking. There is a ton of research on this. Malcolm Gladwell talks about some very, very interesting aspects of this in his book Blink, which I highly recommend.
When I teach executives to be mindful of their meta messages as well as their words I tell them that the meta message accounts for 70% of what we communicate and the words a mere 30%. Anyone who is married knows this intrinsically. You don't even have to hear what your spouse is saying when their body language tells the tale perfectly.
OK - I am actually going to respond to Sarai's comment now that I have shared with you all the things Sarai's comment made me think of.
First I would like to tell you Sarai that you have hit the nail on the head with your remark about Ellie being our first child and having no point of reference. This is sometimes good and sometimes bad. The good is, I don't know any different. Sure I see the differences when I go to the pool and the other moms are chatting away while their 5 year-olds are running around like wild things. But at least that reality is not in my face every day. Ellie is our normal. The bad side is - I worry that, because I have not parented a typically developing child, I don't expect enough of Ellie. I may not push her hard enough. I may be missing things altogether. These thoughts scare me on a regular basis.
You ask how does Ellie express her feelings? That one made me laugh - if you could only meet Ellie (and keeping in mind what I wrote about the message and the meta message) you would have no doubt what she is feeling most of the time - at least on the big things. Ellie is actually really good at getting what she wants across. Her body language is really, really well developed. That said, with the subtler things it's a bit harder for others to read her and when she meets someone new she clams up and takes away all data that might be there when she is feeling safe.
My friend Rick always accuses me of reading Ellie's mind but the truth is I know her cues and she knows I know them. We communicate through a series of looks she gives me along with what would sound like little consonant-less words that have very clear meaning for me when combined with a look and an arm or a whole body lean toward what she wants.
We did use the Mayer-Johnson picture symbols when I first began teaching her the names of emotions. We used the picture symbols along with signs and words spoken and written and exaggerated facial expressions. I would drill her using pictures of babies with different emotions until she had them down. And then when she was having a particular emotion I would say, "Oh look Ellie, that's your happy face!" And I would mimic her happy face and also have her look in the mirror.
Once she learns things we can then move to asking her yes or no questions having her pick our hands (one signing yes and one signing no). Are you sad, yes or no? Are you cold (said signing the word cooooollllldd, yes or no (signing the word yes with the left hand and no with the right hand and bringing both hands very close to her so it's easy for her to chose which one she is, yes cold or no, not cold. Recently she has been able to make a fist and she will do so to sign yes. She loves doing it too - so awesome.
We also use the magnadoodle quite heavily to write down choices for her to pick from. We have three around at all times and often use all in tandem to get to the deeper meaning especially around making more complex choices. For example, she wants a toy but also wants to sing a particular song on that toy with mama or dada and fast or slow. This is a four layer choice sequence which is typical of our day.
That said when she is sitting on my lap we converse using spoken words on my part and some signs because those are harder to do when I am holding her. She will grab my hands meaning she wants to make a choice. Often we just interact like that if the magnadoodle is out of reach or we forget we need it. We joke using musical riffs. Sung notes that were originally part of a toy that became jokes in our exaggeration of them. She sings when she is falling asleep and has recently taken to using her voice to mimic these little musical riffs of 6 to 7 notes. I sing to her too to help her conquer scary things like brushing her teeth or walking in her Pony. Music goes a loooooooong way with Ellie. I have to be part mama, part Pied Piper.
Lately, she is getting really sophisticated in her expressed communications. Now she will pick up the pen of her magnadoodle and want me to write what she is thinking. This is hard because I can only guess. Luckily her school speech therapist is onto this and we are going to start the process of getting Ellie hooked up with some sort of voice output system.
When we are at home, communicating with Ellie is made easier because it's all in context. The context is familiar to the three of us and our conversations revolve around her toys, her day, her meals, games we play, songs we sing, etc. That said, now that Ellie is 5, it is increasingly challenging for us to expand her world in the ways that she would chose on her own without our help. It's an uphill battle in that I am always a step behind where she is. She is the leader here and Dave and I try to keep up.
As you can see, our day with her is very intense in that when she is awake, in order for her to play or do anything we have to facilitate the communication in the ways described above.
Overall Dave and Ellie and I have our unique ways of communicating like any family. Is it any harder than communicating with a child who can talk - probably. With some ingenuity and in the last year high level help from her school Ellie has taken her communication up several notches. As parents our personal mission is to bring the world to her until she can go get it herself. And so it is.
I hope this answers your excellent questions Sarai.
Here is what she asked:
"Your blog makes me think a lot about how difficult it would be to parent when you have a aware but non-verbal child, especially your first child, so you have no point of reference. How much I take for granted, not just the obvious things!!
I do wonder how Ellie's awareness but not able to verbalize influences everything. So she has "typical" (there's that word again) five year old feelings, but not typical ways of being able to express herself. How DOES she express her feelings? Do you have a word board for "happy" "surprised" "angry" "frustrated"? Do you just go by facial expressions, and suggest the name of the feelings for her? Does she use sign language to tell you? Sorry for questions and not suggestions."
These are well timed questions as I have been beefing up my communication skills because of all the work I have been getting. One of the resources I have been using is the Toastmasters International website.
One of the things they stress in their online literature is how important body language is in communication. In some communication theory, the heuristic is that there is the "message" which is the words you actually say. And then there is the meta message which conveys your true intent or tone and that is all done in the body language including the pitch and volume of your voice as well as your posture, facial features, direction the eyes are looking. There is a ton of research on this. Malcolm Gladwell talks about some very, very interesting aspects of this in his book Blink, which I highly recommend.
When I teach executives to be mindful of their meta messages as well as their words I tell them that the meta message accounts for 70% of what we communicate and the words a mere 30%. Anyone who is married knows this intrinsically. You don't even have to hear what your spouse is saying when their body language tells the tale perfectly.
OK - I am actually going to respond to Sarai's comment now that I have shared with you all the things Sarai's comment made me think of.
First I would like to tell you Sarai that you have hit the nail on the head with your remark about Ellie being our first child and having no point of reference. This is sometimes good and sometimes bad. The good is, I don't know any different. Sure I see the differences when I go to the pool and the other moms are chatting away while their 5 year-olds are running around like wild things. But at least that reality is not in my face every day. Ellie is our normal. The bad side is - I worry that, because I have not parented a typically developing child, I don't expect enough of Ellie. I may not push her hard enough. I may be missing things altogether. These thoughts scare me on a regular basis.
You ask how does Ellie express her feelings? That one made me laugh - if you could only meet Ellie (and keeping in mind what I wrote about the message and the meta message) you would have no doubt what she is feeling most of the time - at least on the big things. Ellie is actually really good at getting what she wants across. Her body language is really, really well developed. That said, with the subtler things it's a bit harder for others to read her and when she meets someone new she clams up and takes away all data that might be there when she is feeling safe.
My friend Rick always accuses me of reading Ellie's mind but the truth is I know her cues and she knows I know them. We communicate through a series of looks she gives me along with what would sound like little consonant-less words that have very clear meaning for me when combined with a look and an arm or a whole body lean toward what she wants.
We did use the Mayer-Johnson picture symbols when I first began teaching her the names of emotions. We used the picture symbols along with signs and words spoken and written and exaggerated facial expressions. I would drill her using pictures of babies with different emotions until she had them down. And then when she was having a particular emotion I would say, "Oh look Ellie, that's your happy face!" And I would mimic her happy face and also have her look in the mirror.
Once she learns things we can then move to asking her yes or no questions having her pick our hands (one signing yes and one signing no). Are you sad, yes or no? Are you cold (said signing the word cooooollllldd, yes or no (signing the word yes with the left hand and no with the right hand and bringing both hands very close to her so it's easy for her to chose which one she is, yes cold or no, not cold. Recently she has been able to make a fist and she will do so to sign yes. She loves doing it too - so awesome.
We also use the magnadoodle quite heavily to write down choices for her to pick from. We have three around at all times and often use all in tandem to get to the deeper meaning especially around making more complex choices. For example, she wants a toy but also wants to sing a particular song on that toy with mama or dada and fast or slow. This is a four layer choice sequence which is typical of our day.
That said when she is sitting on my lap we converse using spoken words on my part and some signs because those are harder to do when I am holding her. She will grab my hands meaning she wants to make a choice. Often we just interact like that if the magnadoodle is out of reach or we forget we need it. We joke using musical riffs. Sung notes that were originally part of a toy that became jokes in our exaggeration of them. She sings when she is falling asleep and has recently taken to using her voice to mimic these little musical riffs of 6 to 7 notes. I sing to her too to help her conquer scary things like brushing her teeth or walking in her Pony. Music goes a loooooooong way with Ellie. I have to be part mama, part Pied Piper.
Lately, she is getting really sophisticated in her expressed communications. Now she will pick up the pen of her magnadoodle and want me to write what she is thinking. This is hard because I can only guess. Luckily her school speech therapist is onto this and we are going to start the process of getting Ellie hooked up with some sort of voice output system.
When we are at home, communicating with Ellie is made easier because it's all in context. The context is familiar to the three of us and our conversations revolve around her toys, her day, her meals, games we play, songs we sing, etc. That said, now that Ellie is 5, it is increasingly challenging for us to expand her world in the ways that she would chose on her own without our help. It's an uphill battle in that I am always a step behind where she is. She is the leader here and Dave and I try to keep up.
As you can see, our day with her is very intense in that when she is awake, in order for her to play or do anything we have to facilitate the communication in the ways described above.
Overall Dave and Ellie and I have our unique ways of communicating like any family. Is it any harder than communicating with a child who can talk - probably. With some ingenuity and in the last year high level help from her school Ellie has taken her communication up several notches. As parents our personal mission is to bring the world to her until she can go get it herself. And so it is.
I hope this answers your excellent questions Sarai.
Tuesday, July 15, 2008
Understanding Lady Muck
In some ways I still feel really new at parenting. I guess that is fair to say when your kid is only 5 and a three quarters (have to give her credit for all time here) and you have spent the first 4.5 months in a NICU and then 1 to 2 days average per week in the hospital for the next few years. Not that I am complaining - but if feels like lost time in terms of becoming savvy as a parent. And savvy I must get as Ellie is getting very sophisticated very quickly.
The whole incident with her giving me the cold shoulder when I came home after a week of work in the UK is a great example of how I just didn't get it. Thanks to readers of this blog I am now clued in to the emotional blackmail tactics that my five year old, brain damaged or no, can wage upon me. And sheesh - I am really blown away by it. It took me a couple of days to really get a handle on that, which feels really lame in terms of being a savvy parent. Don't get me wrong, it's an absolute great problem to have - the fact that she would do that - the fact that she is able to wage emotional blackmail. The part of me that is always routing for her unreservedly is shouting, "YOU GO GIRL!!!"
However the bottom line is: Ellie is, once again, outpacing me.
I have spent so much time getting to know her subtle ways of communicating that the more obtuse ways are throwing me. I know that sounds weird but it's true. I have spent so much time trying to quickly understand her multiple disabilities including nutritional, neurological, gastronomical needs in order to make life changing/saving decisions for her and very little time reading about what typical kids do.
Before she was born I read the what to expect books and Dr. Sears Baby Book became seminal for me. I read all about typical development. But then after the, you know the story, I threw myself into understanding non-typical development including things like IVH, PVL, Prematurity, Cerebral Palsy, Hydrocephalus, Reflux, Sensory Integration, Neuro Respiratory Therapy, PT, OT, Sign Language, Total Communication and on and on. I didn't learn about any of it because I wanted to, but because I had too. I will never forget our first meeting with the team of Doctors who treated Ellie in the NICU. I remember sitting there being asked to make decisions about her life and not understanding what the heck they were talking about. All the terms were really scary like shunts and NEC and other huge scary cliffs that preemie babies must hurtle. So Dave and I got on line, bought text books, asked each question three times to three different people (that is a really good one if you are currently in the NICU with your baby - guaranteed to get you three different answers).
When Ellie was 2 and a half I stopped reading about what she "should" be doing according to the experts on typical childhood development. Frankly it was just too painful. She wasn't sitting on her own and there are dire predictions about that fact linked to walking which now I realize are totally fallible. I gave away the what to expect books and even the Dr. Sears book to first time expecting friends. I just couldn't bear to read them and didn't want to get depressed. I preferred to take Ellie where she was and go from there with all the hope and determination in the world. I didn't need books around reminding me of where she should be especially because those books never gave her any credit or consideration from whence she came! I know that other moms of kids who were preemies and kids who had rough starts and have CP and multiple disabilities will totally relate to that last sentence. Right? It's all relative!
And for all of that, I didn't get it that Ellie's way of telling me she did not like it that I was gone for 7 days was giving me the cold shoulder. Sigh. My own stupidity is just astonishing sometimes! Total Homer Simpson moment - Doh!
No resting on the ole and getting "oler" haunches here. Now it's time to learn about typical 5 year old behavior (4 year old, 6 year old, then 7 year old, you get the picture). And now that I feel less scared about who she is becoming/where she is headed I think I might be able to read those "other" books about those "other" kids and not feel bad. In fact I realize there is allot to learn there to help me understand Ellie. As I write that it's just amazing how full circle I have come with that - not in a pat myself on the back kind of way - but in a - gee never thought I'd be hearing myself saying that kind of way. One of those moments when I have to pause and take note.
It's a good problem to have, in fact a problem that considering the way things went down I didn't know if I would ever have. I'm grateful. I would be grateful, as well, to learn the titles and authors of any books or websites you have found useful in deciphering the emotional language of young children.
The whole incident with her giving me the cold shoulder when I came home after a week of work in the UK is a great example of how I just didn't get it. Thanks to readers of this blog I am now clued in to the emotional blackmail tactics that my five year old, brain damaged or no, can wage upon me. And sheesh - I am really blown away by it. It took me a couple of days to really get a handle on that, which feels really lame in terms of being a savvy parent. Don't get me wrong, it's an absolute great problem to have - the fact that she would do that - the fact that she is able to wage emotional blackmail. The part of me that is always routing for her unreservedly is shouting, "YOU GO GIRL!!!"
However the bottom line is: Ellie is, once again, outpacing me.
I have spent so much time getting to know her subtle ways of communicating that the more obtuse ways are throwing me. I know that sounds weird but it's true. I have spent so much time trying to quickly understand her multiple disabilities including nutritional, neurological, gastronomical needs in order to make life changing/saving decisions for her and very little time reading about what typical kids do.
Before she was born I read the what to expect books and Dr. Sears Baby Book became seminal for me. I read all about typical development. But then after the, you know the story, I threw myself into understanding non-typical development including things like IVH, PVL, Prematurity, Cerebral Palsy, Hydrocephalus, Reflux, Sensory Integration, Neuro Respiratory Therapy, PT, OT, Sign Language, Total Communication and on and on. I didn't learn about any of it because I wanted to, but because I had too. I will never forget our first meeting with the team of Doctors who treated Ellie in the NICU. I remember sitting there being asked to make decisions about her life and not understanding what the heck they were talking about. All the terms were really scary like shunts and NEC and other huge scary cliffs that preemie babies must hurtle. So Dave and I got on line, bought text books, asked each question three times to three different people (that is a really good one if you are currently in the NICU with your baby - guaranteed to get you three different answers).
When Ellie was 2 and a half I stopped reading about what she "should" be doing according to the experts on typical childhood development. Frankly it was just too painful. She wasn't sitting on her own and there are dire predictions about that fact linked to walking which now I realize are totally fallible. I gave away the what to expect books and even the Dr. Sears book to first time expecting friends. I just couldn't bear to read them and didn't want to get depressed. I preferred to take Ellie where she was and go from there with all the hope and determination in the world. I didn't need books around reminding me of where she should be especially because those books never gave her any credit or consideration from whence she came! I know that other moms of kids who were preemies and kids who had rough starts and have CP and multiple disabilities will totally relate to that last sentence. Right? It's all relative!
And for all of that, I didn't get it that Ellie's way of telling me she did not like it that I was gone for 7 days was giving me the cold shoulder. Sigh. My own stupidity is just astonishing sometimes! Total Homer Simpson moment - Doh!
No resting on the ole and getting "oler" haunches here. Now it's time to learn about typical 5 year old behavior (4 year old, 6 year old, then 7 year old, you get the picture). And now that I feel less scared about who she is becoming/where she is headed I think I might be able to read those "other" books about those "other" kids and not feel bad. In fact I realize there is allot to learn there to help me understand Ellie. As I write that it's just amazing how full circle I have come with that - not in a pat myself on the back kind of way - but in a - gee never thought I'd be hearing myself saying that kind of way. One of those moments when I have to pause and take note.
It's a good problem to have, in fact a problem that considering the way things went down I didn't know if I would ever have. I'm grateful. I would be grateful, as well, to learn the titles and authors of any books or websites you have found useful in deciphering the emotional language of young children.
Sunday, July 13, 2008
Fair Play to Her
OK - so am feeling better since Friday when I returned to my cool as a cucumber Ellie. In fairness she was really tired and in the middle of her dinner/video/go all around the house routine (don't ask) when I returned. But on Saturday, all she wanted was mama. I was there when she woke up because I am still on UK time and she was delighted. When Dave would pick her up she would want to come to me. She wanted to play every mama and Ellie activity and each one only once and for a shortened time. It was as if she wanted a little taste of all the little jokes and games, songs, and books we do together because she had not had them for one week. So, especially in light of Sarai's comment on my last post, I can see she did miss me in her own way and that is fine.
Once again, Parenting, i.e. the ultimate exercise in getting one's head out of their own dark places and seeing someone else as they are, not as I would be. Lovely exercise really, ongoing as it is and as hard as it is a times.... ;-)
Once again, Parenting, i.e. the ultimate exercise in getting one's head out of their own dark places and seeing someone else as they are, not as I would be. Lovely exercise really, ongoing as it is and as hard as it is a times.... ;-)
Saturday, July 12, 2008
Back Home
Thanks to everyone who commented on the last post. Your comments have now been published. I was in the UK all week for work and found that my blackberry would not let me publish your comments and was too cheap to hop on an Internet cafe computer at 1 pound per 10 minutes which is roughly $2 for 10 minutes.
Pictures to follow. Dave and Ellie got on so well without me was a bit disconcerting... ;-)
This is one of the ways I definitely notice that my kid is NOT typical. When I can leave for 7 days and not have them really show any emotion that I am leaving, am gone and then am back. I would ask to talk to Ellie on the phone and she would intone messages to me and that was great. But there was no disruption to her that was really visible (and thanks to Dave who did a great job looking after her on his own even through the third set of casts that she got on Monday). So her calmness speaks to that and that is a good thing don't get me wrong. But emotionally for me there is a but...
I guess that I am assuming that a typical 5 year old might be a bit more vocal and obvious about the fact that mama is not around and that their emotions would be high at the actual point of departure and the point of return. A typical 5 year old would be able to talk to me over the phone. At 5 almost 6 if your kid is typical you get to have conversations with them. But there was none of that. And you know what, that hurt. Not that I want her to be sad, but I would like to be a blip on the radar - even a tiny one. I would have liked her to at least be asking Dave for mama or for her to want me in particular when I got back. But no.The moment I walked in she indicated that she wanted me to help her change her video. At first I thought she was requesting to sit on my lap (which made me feel like she did miss me) and then realized that she was pointing to the magna doodle on the chair that had video choices on it.... sigh.
It's the little things sometimes that are the most painful. And my heart is a bit crushed to not even be a blip on her radar because the entire time I was away from them, though I got on with things, it was really hard. I really missed them both. Mama's can have needs too though this whole thing with Ellie has been an exercise in putting my own needs aside. I find the other-centeredness of parenting to be really freeing though I am not totally without ego or need.
Is this why people in middle age become so decrepit? They are just valued for their workhorse capacities and not much more? Versus the petulance of one's 20's where beauty and love are the main themes? If so, I can't wait until I am 80.
Pictures to follow. Dave and Ellie got on so well without me was a bit disconcerting... ;-)
This is one of the ways I definitely notice that my kid is NOT typical. When I can leave for 7 days and not have them really show any emotion that I am leaving, am gone and then am back. I would ask to talk to Ellie on the phone and she would intone messages to me and that was great. But there was no disruption to her that was really visible (and thanks to Dave who did a great job looking after her on his own even through the third set of casts that she got on Monday). So her calmness speaks to that and that is a good thing don't get me wrong. But emotionally for me there is a but...
I guess that I am assuming that a typical 5 year old might be a bit more vocal and obvious about the fact that mama is not around and that their emotions would be high at the actual point of departure and the point of return. A typical 5 year old would be able to talk to me over the phone. At 5 almost 6 if your kid is typical you get to have conversations with them. But there was none of that. And you know what, that hurt. Not that I want her to be sad, but I would like to be a blip on the radar - even a tiny one. I would have liked her to at least be asking Dave for mama or for her to want me in particular when I got back. But no.The moment I walked in she indicated that she wanted me to help her change her video. At first I thought she was requesting to sit on my lap (which made me feel like she did miss me) and then realized that she was pointing to the magna doodle on the chair that had video choices on it.... sigh.
It's the little things sometimes that are the most painful. And my heart is a bit crushed to not even be a blip on her radar because the entire time I was away from them, though I got on with things, it was really hard. I really missed them both. Mama's can have needs too though this whole thing with Ellie has been an exercise in putting my own needs aside. I find the other-centeredness of parenting to be really freeing though I am not totally without ego or need.
Is this why people in middle age become so decrepit? They are just valued for their workhorse capacities and not much more? Versus the petulance of one's 20's where beauty and love are the main themes? If so, I can't wait until I am 80.
Sunday, June 29, 2008
I go where true love goes, I go where true love goes..
Those words are from Yusef Islam (a.k.a. Cat Stevens) and they helped me to frame an experience I had today that has taken me from love to surprise to annoyance and anger all the way back to love.
Dave and Ellie and I went to a very special occasion of some good friends of ours today. We went there because we love these people and wanted to celebrate with them the joy they were holding up in gratitude. It was lovely to witness their happiness.
As we were sitting there after the event and everyone was eating. Ellie was sitting on Dave's lap and we were reading to her and contemplating hitting the food table when my friend came up to get a picture of Ellie. As my friend was trying to get Ellie to look up and smile a woman came and sat down very close next to Dave and snapped her fingers in front of Ellie's face and even stroked Ellie's cheek and spoke to her loudly and harshly telling her to look at the camera. Dave instinctively turned his body and Ellie away from her. That was when I was surprised because when weird things like this happen I am sometimes slow to process.
My friend took the picture and moved on at which point this woman started talking. She asked, "What's wrong with her?" Pointing at Ellie. At this point I was reminded of children who very openly ask about Ellie in their innocent accepting way. I was happy to be there for my friend and my heart was open so I decided to give this woman the benefit of the doubt. So I told her that nothing was wrong with Ellie but she did have Cerebral Palsy. She asked what exactly that meant. So I explained that CP is somewhat of a garbage bad diagnosis and manifests differently in people that have it. She persisted and her voice was getting louder. She said she was a psychiatric nurse but she didn't remember her medical training around CP. At this point I had Ellie come and sit on my lap from Dave's and a bit farther away from this insistent person. I started to read to Ellie and talk to her to basically distract her so she wouldn't pay attention to anything this woman was saying. Ellie understands allot for her age even as compared to a typical 5 and a half year old. She was open mouth gaping at this woman as if to say what is up with you? Do I know you? Why are you talking so loudly? This is when I got annoyed.
This woman is what I would call a low self monitor. Someone who doesn't take cues from her social situations very well. She was insistent upon delving into our personal lives. She asked us if Ellie was happy. We said yes. She was so puzzled by this. Then she actually said, "But are you happy, really, how can you be?" Dave and I said together, "Yes we are happy, we love Ellie!".
To which the woman replied, "I often wonder how parents of handicapped children can be happy. I myself could not have kids but we adopted one from Guatemala and one from Costa Rica. It's awful about the down syndrome kids isn't it?" The whole time Dave is saying less and less. Then she launches into a rant about how people abort down syndrome babies and how wrong that is and how all the research she has read show that women regret it and on and on. This is when I felt anger. Anger that she was saying that in front of Ellie. Anger that she was talking about this to us at all. Anger at all the crap she was implying. Anger that she was hard lining it about woman's reproductive rights and thinking that she could possibly understand how all women would feel regarding abortion. Angry that she was letting Ellie in on the fact that some people. and I hazard to say a majority, don't feel like a disabled life is worth living.
What do you do in this situation? Do I tell her off? No. Do I get up and walk away and make a scene and ruin my friends special day? No way! So instead I nudge Dave and ask him to get us a sandwich. The talk of food was enough to distract her and she went to get some herself. I was relieved that she had gone though I still felt very bad at this whole thing. The joy I had felt earlier for my friend had seeped away and I just wanted to get out of Dodge. And then I felt bad that I let someone's ignorance and bad social skills influence my state of consciousness in a such a negative way on my friend's special day.
It has been this combination of emotions that I have been battling with for the rest of the day. It's really not worth it right? And I have to say these feelings flared slightly around lunch time but then I decided to let them go. Because I love Dave and Ellie and we are happy and other than that brief encounter were having a really nice day. That said, the whole experience was sitting uneasily in my chest like a restless thing that was padding blunt feet one level above my awareness with the consistency of some far away jack hammer.
It was not a day I wanted such distractions. Later in the afternoon when Ellie was getting her avocado she was watching the Signing Time, "Time to eat" video. She had her little Weemote and put on one of the songs she doesn't usually put on. It was one describing breakfast lunch and dinner. She did this and when I came over with her food and she put her hand on my arm and looked at me and then to the video. And I knew what she was asking. And I said, you are having a SNACK! That is between lunch and dinner. Snack! And she was delighted.
A few moments later when I came back from getting her some more food at the counter she had switched to the part about setting the table and as I came closer I saw her practicing the sign for cup. She would bring her hands together as Rachel on the video would demonstrate the sign for cup. Ellie would do her cup then she would switch the video back to cup and try again. She did this four times. Cup, practice, cup, practice, cup, practice. There she was practicing not caring if anyone was looking. Just totally absorbed in learning something she wanted to learn.
Looking back on that I feel lucky. Lucky enough to get to see Dave and Ellie, these two extraordinary people, in private moments you are only a part of in a family. Like Ellie practicing how to sign cup when she thought no one was watching .
Ellie went to bed around 9:30 tonight after falling asleep on my lap. At this point I started searching You Tube for something to watch. I found JK Rowling's commencement speech to Harvard which was good. But that wasn't what I was looking for. There was some bit of wisdom out there that would settle this restlessness or at least comfort me. So I typed in Cat Stevens as I have been a long time fan. That is when I came across the song titled "Heaven/where true love goes". I realize that Yusef was singing about god but this song made me think of Ellie.
"Follow true love, follow true love." I do and that is the simple explanation that we gave this morning. We love her and that is enough, that is allot. I don't need a reason for that or to justify it to onlookers. I don't need pity because I have so much love. And just like that, upon hearing that song, I felt my heart open and my mind was put at ease.
Dave and Ellie and I went to a very special occasion of some good friends of ours today. We went there because we love these people and wanted to celebrate with them the joy they were holding up in gratitude. It was lovely to witness their happiness.
As we were sitting there after the event and everyone was eating. Ellie was sitting on Dave's lap and we were reading to her and contemplating hitting the food table when my friend came up to get a picture of Ellie. As my friend was trying to get Ellie to look up and smile a woman came and sat down very close next to Dave and snapped her fingers in front of Ellie's face and even stroked Ellie's cheek and spoke to her loudly and harshly telling her to look at the camera. Dave instinctively turned his body and Ellie away from her. That was when I was surprised because when weird things like this happen I am sometimes slow to process.
My friend took the picture and moved on at which point this woman started talking. She asked, "What's wrong with her?" Pointing at Ellie. At this point I was reminded of children who very openly ask about Ellie in their innocent accepting way. I was happy to be there for my friend and my heart was open so I decided to give this woman the benefit of the doubt. So I told her that nothing was wrong with Ellie but she did have Cerebral Palsy. She asked what exactly that meant. So I explained that CP is somewhat of a garbage bad diagnosis and manifests differently in people that have it. She persisted and her voice was getting louder. She said she was a psychiatric nurse but she didn't remember her medical training around CP. At this point I had Ellie come and sit on my lap from Dave's and a bit farther away from this insistent person. I started to read to Ellie and talk to her to basically distract her so she wouldn't pay attention to anything this woman was saying. Ellie understands allot for her age even as compared to a typical 5 and a half year old. She was open mouth gaping at this woman as if to say what is up with you? Do I know you? Why are you talking so loudly? This is when I got annoyed.
This woman is what I would call a low self monitor. Someone who doesn't take cues from her social situations very well. She was insistent upon delving into our personal lives. She asked us if Ellie was happy. We said yes. She was so puzzled by this. Then she actually said, "But are you happy, really, how can you be?" Dave and I said together, "Yes we are happy, we love Ellie!".
To which the woman replied, "I often wonder how parents of handicapped children can be happy. I myself could not have kids but we adopted one from Guatemala and one from Costa Rica. It's awful about the down syndrome kids isn't it?" The whole time Dave is saying less and less. Then she launches into a rant about how people abort down syndrome babies and how wrong that is and how all the research she has read show that women regret it and on and on. This is when I felt anger. Anger that she was saying that in front of Ellie. Anger that she was talking about this to us at all. Anger at all the crap she was implying. Anger that she was hard lining it about woman's reproductive rights and thinking that she could possibly understand how all women would feel regarding abortion. Angry that she was letting Ellie in on the fact that some people. and I hazard to say a majority, don't feel like a disabled life is worth living.
What do you do in this situation? Do I tell her off? No. Do I get up and walk away and make a scene and ruin my friends special day? No way! So instead I nudge Dave and ask him to get us a sandwich. The talk of food was enough to distract her and she went to get some herself. I was relieved that she had gone though I still felt very bad at this whole thing. The joy I had felt earlier for my friend had seeped away and I just wanted to get out of Dodge. And then I felt bad that I let someone's ignorance and bad social skills influence my state of consciousness in a such a negative way on my friend's special day.
It has been this combination of emotions that I have been battling with for the rest of the day. It's really not worth it right? And I have to say these feelings flared slightly around lunch time but then I decided to let them go. Because I love Dave and Ellie and we are happy and other than that brief encounter were having a really nice day. That said, the whole experience was sitting uneasily in my chest like a restless thing that was padding blunt feet one level above my awareness with the consistency of some far away jack hammer.
It was not a day I wanted such distractions. Later in the afternoon when Ellie was getting her avocado she was watching the Signing Time, "Time to eat" video. She had her little Weemote and put on one of the songs she doesn't usually put on. It was one describing breakfast lunch and dinner. She did this and when I came over with her food and she put her hand on my arm and looked at me and then to the video. And I knew what she was asking. And I said, you are having a SNACK! That is between lunch and dinner. Snack! And she was delighted.
A few moments later when I came back from getting her some more food at the counter she had switched to the part about setting the table and as I came closer I saw her practicing the sign for cup. She would bring her hands together as Rachel on the video would demonstrate the sign for cup. Ellie would do her cup then she would switch the video back to cup and try again. She did this four times. Cup, practice, cup, practice, cup, practice. There she was practicing not caring if anyone was looking. Just totally absorbed in learning something she wanted to learn.
Looking back on that I feel lucky. Lucky enough to get to see Dave and Ellie, these two extraordinary people, in private moments you are only a part of in a family. Like Ellie practicing how to sign cup when she thought no one was watching .
Ellie went to bed around 9:30 tonight after falling asleep on my lap. At this point I started searching You Tube for something to watch. I found JK Rowling's commencement speech to Harvard which was good. But that wasn't what I was looking for. There was some bit of wisdom out there that would settle this restlessness or at least comfort me. So I typed in Cat Stevens as I have been a long time fan. That is when I came across the song titled "Heaven/where true love goes". I realize that Yusef was singing about god but this song made me think of Ellie.
"Follow true love, follow true love." I do and that is the simple explanation that we gave this morning. We love her and that is enough, that is allot. I don't need a reason for that or to justify it to onlookers. I don't need pity because I have so much love. And just like that, upon hearing that song, I felt my heart open and my mind was put at ease.
Thursday, June 19, 2008
Neurological Status
I got Ellie's Depakote level checked again today. It was 95 after 13 hours. This is called the trough. The therapeutic level is between 50-100 - meaning when the drug is doing what it is supposed to do - which is prevent seizures.
95 at the trough.
What the heck is it at the peak?
She is still really, really dragging. Really dragging.
And I had an interesting conversation with her new neurologist, whom I still am really pleased with, even more so probably after the straight up conversation he had with me this afternoon.
Basically he told me that Ellie's EEG results showed that she had "very abnormal" EEG but no electrographic seizures. Very abnormal activity in multiple areas of her brain.
Believe it or not, but he is the first neurologist out of 5 who have ever used the word "very abnormal" when it came to Ellie's EEG results. We have heard "abnormal" to "only slightly abnormal" and I am quoting descriptions. So to hear "very abnormal" was a bit of a blow. I asked him about the other results which seemed to fluctuate. He said he looked at all the EEGs they had on record (which may not include the work done out in Cedar Sinai, LA) and said he couldn't account for what other Doctors told us, but that all of them were very abnormal. He continued on saying that if we wanted to take her off seizure meds he would want us to sign a waiver that we were doing so with informed consent and against doctor's recommendations because she would be at such high risk.
See, straight up.
I am not really surprised, just struggling with the hope I had that one day she might get off those damn meds that make her so tired. And I will hold hope still, like Dave does that some day they will find a way to help the damaged areas of her brain to recover.
But for now we have to find the right tempo between seizures and fatigue. The plan moving forward is to see if she is still dragging in one more week. If she is we will lower the dose slightly.
I am also lobbying (and it is like lobbying because I have made 3 calls already to this effect) to get neuro doc to chat with GI doc who says the Cisipride effects the levels of her Depakote...easier said than done.
Some days I hate all of this. Ellie is a bright shining light. Curious all the time and never misses a thing. She always has an opinion and wants to play and move, move, move. So to see her wanting to sleep all the time, have continuous dark circles under her eyes and be half hearted about play just plain sucks and sucks some more.
But as always with Ellie the gentlest approach works the best because like I said before, she's sensitive.
So we wait and see and hope that at the right level she can be her active, inquisitive self while keeping the electrical storms away.
95 at the trough.
What the heck is it at the peak?
She is still really, really dragging. Really dragging.
And I had an interesting conversation with her new neurologist, whom I still am really pleased with, even more so probably after the straight up conversation he had with me this afternoon.
Basically he told me that Ellie's EEG results showed that she had "very abnormal" EEG but no electrographic seizures. Very abnormal activity in multiple areas of her brain.
Believe it or not, but he is the first neurologist out of 5 who have ever used the word "very abnormal" when it came to Ellie's EEG results. We have heard "abnormal" to "only slightly abnormal" and I am quoting descriptions. So to hear "very abnormal" was a bit of a blow. I asked him about the other results which seemed to fluctuate. He said he looked at all the EEGs they had on record (which may not include the work done out in Cedar Sinai, LA) and said he couldn't account for what other Doctors told us, but that all of them were very abnormal. He continued on saying that if we wanted to take her off seizure meds he would want us to sign a waiver that we were doing so with informed consent and against doctor's recommendations because she would be at such high risk.
See, straight up.
I am not really surprised, just struggling with the hope I had that one day she might get off those damn meds that make her so tired. And I will hold hope still, like Dave does that some day they will find a way to help the damaged areas of her brain to recover.
But for now we have to find the right tempo between seizures and fatigue. The plan moving forward is to see if she is still dragging in one more week. If she is we will lower the dose slightly.
I am also lobbying (and it is like lobbying because I have made 3 calls already to this effect) to get neuro doc to chat with GI doc who says the Cisipride effects the levels of her Depakote...easier said than done.
Some days I hate all of this. Ellie is a bright shining light. Curious all the time and never misses a thing. She always has an opinion and wants to play and move, move, move. So to see her wanting to sleep all the time, have continuous dark circles under her eyes and be half hearted about play just plain sucks and sucks some more.
But as always with Ellie the gentlest approach works the best because like I said before, she's sensitive.
So we wait and see and hope that at the right level she can be her active, inquisitive self while keeping the electrical storms away.
Wednesday, June 18, 2008
Peeling Grapes / Food Trials: Age 5
Ellie has perked up a bit. I need to get her Depakote level done this week though, because she is still tired. Though she could also be tired because food trials are hard on her because if we give her something that doesn't suit her she vomits and that takes a great deal out of her. Here is our progress so far:
Tahini - nope, she could not digest this at all. I did give her too big of an amount - 2 tablespoons. But she was so sick from it I hesitate to ever try it again...Bummer- lots of great protein and minerals in tahini which is the paste of sesame seeds.
Goats milk Yogurt (plain unsweetened) - tried for 7 days no extra mucus no prob! Yay! Something I can add to her diet to help her intestines and maybe constipation.
Infant Buffered Vitamin C drops - nope. Gave her 5 cc's or one teaspoon which made her vomit and curdled the contents of her stomach. Bummer too because vitamin c is supposed to help you get the most naturally occurring iron out of your milk and eggs.I have only found one liquid form at the store. Time to search online... the one I tried used fruit purees to sweeten it because it's for babies who will eat it by mouth. It might be that it was too sweet for Ellie and / or that she did not fair well combining fruit and animal products...
Amaranth - she has this from a baby cereal so it's flaked. So far so good! Amaranth is not the seed of a grass which wheat is and rice and oats, i.e. most grains. I wanted to try her on something that wasn't and see if she would have less mucus. She can handle it at least in the flaked form! Yay! Another grain and one with loads of nutrients!!
Blueberry - no prob.
Grapes - makes her slightly gassy after having 10. So need to keep amount smaller. I feel good about giving her grapes raw (pureed after skins have been removed). They have good fiber and are supposed to keep the bowels moving. I haven't seen it help all that much with Ellie's constipation - but the live enzymes in a raw food should help support her entire system. Note I have her these alone on an empty stomach (thinned with water through the g-tube).
So right now we are in a break from food trials. I will try her on a couple more things in a couple of weeks.
Next Up:
Lamb (I want to expand her variety of protein that she can eat - if she is ready)
Vegetable soup made with homemade (low sodium) chicken stock
Beans: Great Northern
Here is a pretty good book that is giving me some ideas: Super Baby Food I say it's only pretty good from my perspective trying to feed Ellie who has serious issues because she does not practice food combining. However, great approach in general and lots of ideas and good information.
Ellie is on vacation this week. So the food trials are over and it's time to have some fun. Pictures to follow.
Tahini - nope, she could not digest this at all. I did give her too big of an amount - 2 tablespoons. But she was so sick from it I hesitate to ever try it again...Bummer- lots of great protein and minerals in tahini which is the paste of sesame seeds.
Goats milk Yogurt (plain unsweetened) - tried for 7 days no extra mucus no prob! Yay! Something I can add to her diet to help her intestines and maybe constipation.
Infant Buffered Vitamin C drops - nope. Gave her 5 cc's or one teaspoon which made her vomit and curdled the contents of her stomach. Bummer too because vitamin c is supposed to help you get the most naturally occurring iron out of your milk and eggs.I have only found one liquid form at the store. Time to search online... the one I tried used fruit purees to sweeten it because it's for babies who will eat it by mouth. It might be that it was too sweet for Ellie and / or that she did not fair well combining fruit and animal products...
Amaranth - she has this from a baby cereal so it's flaked. So far so good! Amaranth is not the seed of a grass which wheat is and rice and oats, i.e. most grains. I wanted to try her on something that wasn't and see if she would have less mucus. She can handle it at least in the flaked form! Yay! Another grain and one with loads of nutrients!!
Blueberry - no prob.
Grapes - makes her slightly gassy after having 10. So need to keep amount smaller. I feel good about giving her grapes raw (pureed after skins have been removed). They have good fiber and are supposed to keep the bowels moving. I haven't seen it help all that much with Ellie's constipation - but the live enzymes in a raw food should help support her entire system. Note I have her these alone on an empty stomach (thinned with water through the g-tube).
So right now we are in a break from food trials. I will try her on a couple more things in a couple of weeks.
Next Up:
Lamb (I want to expand her variety of protein that she can eat - if she is ready)
Vegetable soup made with homemade (low sodium) chicken stock
Beans: Great Northern
Here is a pretty good book that is giving me some ideas: Super Baby Food I say it's only pretty good from my perspective trying to feed Ellie who has serious issues because she does not practice food combining. However, great approach in general and lots of ideas and good information.
Ellie is on vacation this week. So the food trials are over and it's time to have some fun. Pictures to follow.
Saturday, June 14, 2008
Sensitive
Her system is sensitive. I know that. It's frustrating. I don't do all the nutritional gymnastics because I like to. I do it because I have to. It would be so great if I didn't have to worry about food combining, the richness of the food, etc. Some days there is nothing I wish I could do more but to share the food I eat with Ellie. But it's not possible because so many things make her sick. Tonight is a case in point.
I have been feeling in my gut that her diet needs to change. I have stopped her from being vomit baby and I even think the Slippery Elm is helping her intestinal tract heal. I definitely notice her smelling less acidic after she has it. So all that is good progress, has kept esophaegeal cancer at bay and transformed her into a relatively healthy little girl from the very sick little baby she was.
However, there are still big challenges like the fact that her motility is snail slow, if it moves at all on it's own. I am seriously worried about her little beleagured liver. She is on Cisipride to increase her motility, Zantac to limit acid production, Protonix to inhibit proton pumps, and Myralax to keep her moving. With all that she still deals with chronic constipation and extremely slow food processing. Her brain injury resulted in a hypotonic type of cerebral palsy in all her limbs and especially her trunk. That hypotonia (or low muscle tone = muscle weakness) doesn't stop on the outside, nor in the big muscles like the biceps, but extends to her whole body right down the the sphincters that control the speed of her motility/digestion which effects the absorbtion of nutrients and flushing of toxins from her system - very serious important business to get right for health, quality of life, development in a child as well as overall longevity. With the diet I have had her on, along with all the meds, I have seen her stomach empty faster than ever before, which is still slow compared to how it should be. So that's good to an extent.
But we found out yesterday why, why, why she was so sluggish and pale and getting even more floppy over the last two weeks. Her Depakote(Valproic Acid) level (she takes this for seizures) was 165. That is 65 levels higher than the top of the therapeutic range. And we have been giving her the prescribed dose each day. So no ear infection, no mysterious virus, no brain damage, but drug overdose. As I write this my brain is saying the f word over and over and over. I am mad at myself, mad at the whole thing. f word fword fword...
We caught it, it's coming down. I think it went up because she has been very constipated so her Myralax dose has to come up. Also she has grown but because she has been doing so well in terms of digestion we did not increase her Cisipride though we could have but opted not to - why - see comments about her liver above.
Now we are adjusting/reducing her Depakote dose and on Monday I have to have a long talk with her GI doc to take another look at all those drugs. We got a new gigantic bottle of Myralax and gave her some to which she produced a rabbit pellet consistency small bowel movement.
Below I will describe the drug interaction tango we are performing:
Ellie is on time release Depakote capsules because the Depakane syrup (aside from being totally acidic and horrible on her tummy) was very unstable in her system and she had a couple of break through seizures on it. So we switched to the crystals, which are way easier in her stomach and stay in the system longer - which has it's pluses and major minuses. The Depakote is effected by her Cisipride and her level of constipation as well as weight gain. Increase the Cisipride, the Depakote level will plunge. If she gets constipated it will climb. If she gains weight the Depakote level will drop unless the Cisipride is raised. There are even more dynamics except my brain just went into the fword mode just recounting what is here. and again fkfkfkfkfkfk.
After we found out that her level was through the roof I started reading up again to try to find ways to try to jump start her motility using nutrition/food. Not that there is anything on this specifically so I have to look at different food and how binding they are as well as if they are super foods like garlic and if that will help. I am seriously thinking of juicing small amounts of parsley for her and trying her on Amoranth instead of using rice milk all the time... It feels like I am cutting my own trail through the wilderness that is Ellie's specific nutritional needs. Cutting a trail to an unknown place with unknown benefit.
The fact is it's not enough anymore that she is not vomit baby. I want to wake up her digestive system. And that is not going to happen on the diet she is on, as good as it is it is starting to feel limited. She is 5 and half now and gained 10 pounds last year as well as 4 inches in height. She is actually on the growth curve for heigth and weight - at 2% (the regular growth chart, not the one for CP kids). My point is she is getting bigger and I feel a need to keep up with her. I don't want her to be so dependant on all those drugs.
I want to introduce another protein source specifically because she is on allot of goat's milk and milk in general is binding to the chronically constipated especially. So I gave her a little tahini (sesame seed paste) with her peas tonight for dinner, against my better judgement (note to self - stick with past MO of only trying new foods in the morning). Three hours later she vomited up the entire dinner, completely undigested along with a huge amount of clear mucus. When you see that much mucus in someone's vomit it is a sign of food allergy. Now Ellie has been tested for nut and other allergies and come out negative. But we are going to have to revisit those tests.
So poor Ellie! In the last 24 hours she has had to have a urine catheter (to take a sample) two blood tests (so she is bruised on both arms) and vomited up her entire dinner, as well as feeling exhausted because of the elevated Depakote level. fkfkfkfkfkfkf!
I feel like we are back as square one, or really square three. And I have to add foods more slowly, like you would with a baby, try a teaspoon at a time building up slowly. Whenever I try to rush it with Ellie, it never works. I clearly gave her too much tahini. So now that is off the list. Bummer too because there are 190 calories in 2 table spoons full of nutrients. fkfkfkfkkf!
It's going to be a long night. I tried to give her some water after the first humongous emesis and that only produced more emesis. So I am waiting to give her more. She will inevitably wake up in the middle of the night - hungry as hell - and fair play to her. And I will feed her and hope to god she can keep it down.
Sensitive.
Frustrated.
I have been feeling in my gut that her diet needs to change. I have stopped her from being vomit baby and I even think the Slippery Elm is helping her intestinal tract heal. I definitely notice her smelling less acidic after she has it. So all that is good progress, has kept esophaegeal cancer at bay and transformed her into a relatively healthy little girl from the very sick little baby she was.
However, there are still big challenges like the fact that her motility is snail slow, if it moves at all on it's own. I am seriously worried about her little beleagured liver. She is on Cisipride to increase her motility, Zantac to limit acid production, Protonix to inhibit proton pumps, and Myralax to keep her moving. With all that she still deals with chronic constipation and extremely slow food processing. Her brain injury resulted in a hypotonic type of cerebral palsy in all her limbs and especially her trunk. That hypotonia (or low muscle tone = muscle weakness) doesn't stop on the outside, nor in the big muscles like the biceps, but extends to her whole body right down the the sphincters that control the speed of her motility/digestion which effects the absorbtion of nutrients and flushing of toxins from her system - very serious important business to get right for health, quality of life, development in a child as well as overall longevity. With the diet I have had her on, along with all the meds, I have seen her stomach empty faster than ever before, which is still slow compared to how it should be. So that's good to an extent.
But we found out yesterday why, why, why she was so sluggish and pale and getting even more floppy over the last two weeks. Her Depakote(Valproic Acid) level (she takes this for seizures) was 165. That is 65 levels higher than the top of the therapeutic range. And we have been giving her the prescribed dose each day. So no ear infection, no mysterious virus, no brain damage, but drug overdose. As I write this my brain is saying the f word over and over and over. I am mad at myself, mad at the whole thing. f word fword fword...
We caught it, it's coming down. I think it went up because she has been very constipated so her Myralax dose has to come up. Also she has grown but because she has been doing so well in terms of digestion we did not increase her Cisipride though we could have but opted not to - why - see comments about her liver above.
Now we are adjusting/reducing her Depakote dose and on Monday I have to have a long talk with her GI doc to take another look at all those drugs. We got a new gigantic bottle of Myralax and gave her some to which she produced a rabbit pellet consistency small bowel movement.
Below I will describe the drug interaction tango we are performing:
Ellie is on time release Depakote capsules because the Depakane syrup (aside from being totally acidic and horrible on her tummy) was very unstable in her system and she had a couple of break through seizures on it. So we switched to the crystals, which are way easier in her stomach and stay in the system longer - which has it's pluses and major minuses. The Depakote is effected by her Cisipride and her level of constipation as well as weight gain. Increase the Cisipride, the Depakote level will plunge. If she gets constipated it will climb. If she gains weight the Depakote level will drop unless the Cisipride is raised. There are even more dynamics except my brain just went into the fword mode just recounting what is here. and again fkfkfkfkfkfk.
After we found out that her level was through the roof I started reading up again to try to find ways to try to jump start her motility using nutrition/food. Not that there is anything on this specifically so I have to look at different food and how binding they are as well as if they are super foods like garlic and if that will help. I am seriously thinking of juicing small amounts of parsley for her and trying her on Amoranth instead of using rice milk all the time... It feels like I am cutting my own trail through the wilderness that is Ellie's specific nutritional needs. Cutting a trail to an unknown place with unknown benefit.
The fact is it's not enough anymore that she is not vomit baby. I want to wake up her digestive system. And that is not going to happen on the diet she is on, as good as it is it is starting to feel limited. She is 5 and half now and gained 10 pounds last year as well as 4 inches in height. She is actually on the growth curve for heigth and weight - at 2% (the regular growth chart, not the one for CP kids). My point is she is getting bigger and I feel a need to keep up with her. I don't want her to be so dependant on all those drugs.
I want to introduce another protein source specifically because she is on allot of goat's milk and milk in general is binding to the chronically constipated especially. So I gave her a little tahini (sesame seed paste) with her peas tonight for dinner, against my better judgement (note to self - stick with past MO of only trying new foods in the morning). Three hours later she vomited up the entire dinner, completely undigested along with a huge amount of clear mucus. When you see that much mucus in someone's vomit it is a sign of food allergy. Now Ellie has been tested for nut and other allergies and come out negative. But we are going to have to revisit those tests.
So poor Ellie! In the last 24 hours she has had to have a urine catheter (to take a sample) two blood tests (so she is bruised on both arms) and vomited up her entire dinner, as well as feeling exhausted because of the elevated Depakote level. fkfkfkfkfkfkf!
I feel like we are back as square one, or really square three. And I have to add foods more slowly, like you would with a baby, try a teaspoon at a time building up slowly. Whenever I try to rush it with Ellie, it never works. I clearly gave her too much tahini. So now that is off the list. Bummer too because there are 190 calories in 2 table spoons full of nutrients. fkfkfkfkkf!
It's going to be a long night. I tried to give her some water after the first humongous emesis and that only produced more emesis. So I am waiting to give her more. She will inevitably wake up in the middle of the night - hungry as hell - and fair play to her. And I will feed her and hope to god she can keep it down.
Sensitive.
Frustrated.
Tuesday, June 10, 2008
We *trumps I
First lesson of going to graduate school is that, unfortunately in our society, it's an elitist thing to do. I never realized that until I strapped myself with over $100,000 dollars in debt to go. That on top of working 3/4 to full time the entire way through it, which actually helped me apply the lessons I was learning because I made sure I took jobs related to organizational psychology. I was one of only a few students that had to work at all. That is when I realized that it was not for the smart or bold enough person but for the wealthiest or stupid enough person who would take on so much debt - like me.
Second lesson of the applied graduate program in Organizational Psychology I attended was:
We trumps I.
This is one of the major things I learned through the 5 years I spent chasing my Ph.D.
We trumps I.
What I mean by that is that the dynamics of the group are more powerful than the dynamics of the individual when the individual is physically within the group and sometimes outside of it, especially on the extreme ends of experience either positive or negative. This doesn't go over well in the Western individualistic society (versus Eastern collectivist society), but I have seen it again and again. And you know what, everyone reading this blog experiences it on a regular basis. It is this powerful dynamic that I was talking about in this post, versus me being a god. Much as that would be fun (for those Neil Gaimon fans out there) it's simply not the case and there is no one more aware of that than me.
Here are some examples to illustrate my point:
The Mob or Group Think.
Mob mentality has been widely studied, written about, been the subject of many a movie, Frankenstein comes to mind. The dynamics of Group Think are documented very well in that movie, 12 Angry Men and also were the dynamics that were going on in the Cuban Missile Crisis which almost ignited a WWIII.
In graduate school we did a great many exercises with our group of 21 over the course of four years to teach us the principles of group dynamics that come into play when you are working with any team or company. Part of those lessons were about looking at yourself and understanding your natural preferences.
Bottom line is the group effects people's behavior and perceptions of themselves and reality. There is an impact in all of this that is profound. And though we trumps I, a single person can influence them as well. This is NOT about anyone being the victim of anything. You can influence your environment and in doing so influence other people (add - scream - this is what I meant!!!). When I wrote that Ellie is our dream child, it was these dynamics that I was referring to. Of course there is an individual component in life. What we do while under the pressures we feel from society is based on our individual natures, unique gifts and personality. It's all part of it.
Before graduate school was even a wish, I used to work with juvenile delinquents at a house that did not do physical take downs or any sort of physical restraint - which is why I worked there. They relied on the peer pressure to keep the kids in line. And it worked. That is not to say the kids did not do things like every now and then try to leave, because there were no locked doors there, or misbehave or talk back. But it was remarkable how they came there somewhat hardened by life and would become kids again. They were ages 13-19 and almost all members of gangs, all committers of crimes, and all survivors of an unimaginable variety of child abuse.
It was great to see them get to start acting their age when they knew they were safe and could relax a little. And their backgrounds were as diverse as the readers of this blog. They weren't all from the inner city and their ethnicity's were equally mixed. It was the group dynamics that helped them achieve GED's, behavior change, see the world in a new way. It was their individual make ups that determined the extent of what they could achieve in the positive environment. I stopped working with them and going down that career path because after 4 to 6 months of being with us and doing great work they were just thrown back into the same system that made them. The recidivism rate was high. It was a horrible cycle to watch. That was when I made my decision to work with systems to try to change them versus working with the individual.
In this post I struggled between using the word constructivist view of reality and creationist view of reality, choosing the later in the final edits. In under grad I majored in Philosophy, and minored in Ancient Philosophy so the lessons of Aristotle and Plato are deeply ingrained in my thinking. So in the dream child post I was using both terms in an epistemological sense, NOT a religious sense. I can see now how misunderstood I was by at least one angry commenter. And that is the risk in blogging. You are really talking to yourself and letting people listen in. However, if you don't explain enough about where you are coming from you just become a mirror for other people's issues and sometimes anger. That is never fun. It sucks to be misunderstood and then negatively judged, but, I'll live.
So in light of what I have written above, Ellie is a product of the positive home environment and positive school environment. Both are assisting her natural determination and stubbornness and the intelligence she retained despite the injury's to her brain. To try to compare how she is doing to anyone else's kid is like trying to say apples are the same as oranges and a stupid line of thought to go down. To attribute what Ellie can do to any one cause is also folly. To forget that there is an element of chance and destiny and a level that I will never know the entire truth of is another pitfall that can fule some of the gravest feelings of pain and guilt in parents who bust their chops and their kid still may not have a great outcome (medically speaking).
Could we be doing more - definitely. Jacqui and Billie are two great examples of mother's who do more for their kids than me and I take notes from their pages on new things to do and try with Ellie all the time. So if I have been sounding a bit shallow in the posts it's because I am overwhelmed with all the things on my plate and because Ellie has been doing some great things. It is what it is and if reading about it makes you angry, then don't read Ryn Tales. Because this blog was not meant to hurt anyone but as an outlet for me, a running conversation to help me figure all this stuff out and share some of the things I have learned with other parents in the same boat as well as learn from the readers, most of whom have left the most informative helpful comments. So it's not really, go Kathryn and Dave! It's more like, Go Ellie and hope that her parents can keep up! I am happy with whatever she does and with her in general as she is in the moment every moment. I am really happy and forever grateful that she is here. I will be happy as long as she is here. After that all bets are off.
But from my world view, we definitely trumps I. If that is arrogant and elitist, so be it.
* when I say "trump" as in we trumps I, let it be known I am not talking about The Donald but am using in a poker/card playing sense.
Second lesson of the applied graduate program in Organizational Psychology I attended was:
We trumps I.
This is one of the major things I learned through the 5 years I spent chasing my Ph.D.
We trumps I.
What I mean by that is that the dynamics of the group are more powerful than the dynamics of the individual when the individual is physically within the group and sometimes outside of it, especially on the extreme ends of experience either positive or negative. This doesn't go over well in the Western individualistic society (versus Eastern collectivist society), but I have seen it again and again. And you know what, everyone reading this blog experiences it on a regular basis. It is this powerful dynamic that I was talking about in this post, versus me being a god. Much as that would be fun (for those Neil Gaimon fans out there) it's simply not the case and there is no one more aware of that than me.
Here are some examples to illustrate my point:
The Mob or Group Think.
Mob mentality has been widely studied, written about, been the subject of many a movie, Frankenstein comes to mind. The dynamics of Group Think are documented very well in that movie, 12 Angry Men and also were the dynamics that were going on in the Cuban Missile Crisis which almost ignited a WWIII.
In graduate school we did a great many exercises with our group of 21 over the course of four years to teach us the principles of group dynamics that come into play when you are working with any team or company. Part of those lessons were about looking at yourself and understanding your natural preferences.
Bottom line is the group effects people's behavior and perceptions of themselves and reality. There is an impact in all of this that is profound. And though we trumps I, a single person can influence them as well. This is NOT about anyone being the victim of anything. You can influence your environment and in doing so influence other people (add - scream - this is what I meant!!!). When I wrote that Ellie is our dream child, it was these dynamics that I was referring to. Of course there is an individual component in life. What we do while under the pressures we feel from society is based on our individual natures, unique gifts and personality. It's all part of it.
Before graduate school was even a wish, I used to work with juvenile delinquents at a house that did not do physical take downs or any sort of physical restraint - which is why I worked there. They relied on the peer pressure to keep the kids in line. And it worked. That is not to say the kids did not do things like every now and then try to leave, because there were no locked doors there, or misbehave or talk back. But it was remarkable how they came there somewhat hardened by life and would become kids again. They were ages 13-19 and almost all members of gangs, all committers of crimes, and all survivors of an unimaginable variety of child abuse.
It was great to see them get to start acting their age when they knew they were safe and could relax a little. And their backgrounds were as diverse as the readers of this blog. They weren't all from the inner city and their ethnicity's were equally mixed. It was the group dynamics that helped them achieve GED's, behavior change, see the world in a new way. It was their individual make ups that determined the extent of what they could achieve in the positive environment. I stopped working with them and going down that career path because after 4 to 6 months of being with us and doing great work they were just thrown back into the same system that made them. The recidivism rate was high. It was a horrible cycle to watch. That was when I made my decision to work with systems to try to change them versus working with the individual.
In this post I struggled between using the word constructivist view of reality and creationist view of reality, choosing the later in the final edits. In under grad I majored in Philosophy, and minored in Ancient Philosophy so the lessons of Aristotle and Plato are deeply ingrained in my thinking. So in the dream child post I was using both terms in an epistemological sense, NOT a religious sense. I can see now how misunderstood I was by at least one angry commenter. And that is the risk in blogging. You are really talking to yourself and letting people listen in. However, if you don't explain enough about where you are coming from you just become a mirror for other people's issues and sometimes anger. That is never fun. It sucks to be misunderstood and then negatively judged, but, I'll live.
So in light of what I have written above, Ellie is a product of the positive home environment and positive school environment. Both are assisting her natural determination and stubbornness and the intelligence she retained despite the injury's to her brain. To try to compare how she is doing to anyone else's kid is like trying to say apples are the same as oranges and a stupid line of thought to go down. To attribute what Ellie can do to any one cause is also folly. To forget that there is an element of chance and destiny and a level that I will never know the entire truth of is another pitfall that can fule some of the gravest feelings of pain and guilt in parents who bust their chops and their kid still may not have a great outcome (medically speaking).
Could we be doing more - definitely. Jacqui and Billie are two great examples of mother's who do more for their kids than me and I take notes from their pages on new things to do and try with Ellie all the time. So if I have been sounding a bit shallow in the posts it's because I am overwhelmed with all the things on my plate and because Ellie has been doing some great things. It is what it is and if reading about it makes you angry, then don't read Ryn Tales. Because this blog was not meant to hurt anyone but as an outlet for me, a running conversation to help me figure all this stuff out and share some of the things I have learned with other parents in the same boat as well as learn from the readers, most of whom have left the most informative helpful comments. So it's not really, go Kathryn and Dave! It's more like, Go Ellie and hope that her parents can keep up! I am happy with whatever she does and with her in general as she is in the moment every moment. I am really happy and forever grateful that she is here. I will be happy as long as she is here. After that all bets are off.
But from my world view, we definitely trumps I. If that is arrogant and elitist, so be it.
* when I say "trump" as in we trumps I, let it be known I am not talking about The Donald but am using in a poker/card playing sense.
Friday, June 06, 2008
Friday Facts
1. I shouldn't be blogging right now as I have one hour left and way, way too much to do.2. I am off the caffeine free wagon....sigh. Ah well, it's not like I didn't like the stuff. But I have had several days where I have had to be up and alert and articulate and in front of executives teaching them things, speaking to topics that are difficult, pacing and modeling simulations. It all takes so much physical and mental energy. So I drank coffee during those days when I would feel my energy dip. Now in trying to not drink coffee on the days I don't have to be in front of audiences I get a splitting headache that nothing but a small cup o'joe will abate... See what I mean? My body does not do well with it. But there it is. Coffee Nation I am back, at least for now.
3. And yes #2 means that Ellie hasn't been sleeping great as I think she is having some muscle pain from the Botox. Whomever says that getting Botox injections into one's muscles, even with the Versed to help you forget the initial injections, is not painful is out of their mind.
4. Wondering if it's too much to hope for an Obama/Clinton ticket? Further wondering if that would be a sure shot to trump McCaine who will put women's reproductive rights backwards by another 100 years.
5. I owe Kay a gift - but am still agonizing over it - and entirely lame for not having sent it yet.
6. Am happy it is raining here and has been for the last several days. I love the rain, sometimes more than the sun. I don't like the dampness or mildew that can become lodged in stuck places from rain. But I love the grayness of the sky that makes all the other colors of the world stand out more clearly and more distinctly than the harsh contrasts that sun creates. The leaves are never so green nor their trunks so dark. The contrasts within clouds pouring down onto the earth are more luminous. The shadows are soft and the air is awash with fresh oxygen. Let it rain.
7. Happy day, yesterday, Ellie said, with her voice, "uh ah" meaning no I don't want to come off Mama's lap and go to bed!, as well as pronouncing clearly several times the consonants K and D in different but appropriate word contexts. K and D!
8. Ellie has been crawling in her creepster crawler, not well, but not just hanging there either. Yesterday she requested to go in it.
End thought siphon, except to say, have a nice weekend.
Sunday, June 01, 2008
Saturday, May 31, 2008
Friday, May 30, 2008
Dream Child
I definitely have a creationist view of the world, meaning that it is as you create it. And yes this also sits in contradiction with my also deeply held belief that we sign up for some things just to get the experience as soul. As within myself, such is the world, filled with startling contradictions coexisting comfortably side by side throughout eternity.
All of this ruminating has been sparked by a recent visit to our new neurologist. I hadn't intended on finding a new neurologist for Ellie, because we have one, had one, kind of. I was not so happy with him. But as life would have it - way, way back here when we lost our first Boston neurologist, Dr. Janet Soul, whom we loved, I had made an appointment with Dr. Michael Rivkin. Because it took a year to get the appointment, I double downed and also met with the other neurologist Dr. Soul had recommended but whom turned out to be so nonplussed by us and so flip... ugh don't get me started, you can read about the dog and pony show dada had to put on to get him to even listen here, though that meeting resulted in no conclusions or actions. After all this time, however, I completely forgot about the other appointment.
Last week we got a reminder call to meet with Dr. Rivkin. Our long ago made appointment was for this Tuesday at 11am. I almost didn't go because this week has been a rough and tumble stressor of a week. Here's why - I'll just list the crap we all had to contend with:
Now on the other side of it, nursing hours intact, the best IEP ever, and Ellie knocking the ball off the charts in her evaluation testing (yes am pretty proud of her) I have time to take a breath and ponder it all (except the water heater - I can't ponder that at all - I will implode if I do - I have handed that off to Dave, hubby of the year).
You can see why I almost cancelled the meeting. But I took Ellie anyway, pulled her out of classes and got us down to Boston Children's. When I met Dr. Rivkin it was definitely one of those watershed moments when I breathed a great sigh of relief that I hadn't blown off the appointment. Like one walking on the edge of a cliff and catching themselves from falling over the edge at the last moment. I can only describe the events so you know why this was a very different meeting for us than our last two visits to the other neurologist.
Ellie and I are in the waiting room having only been 4 minutes late which is saying something and I hear her name called. (This was after they weighed her and checked her height. By the way she has grown 4 inches over the last year and gained 10 pounds! Go Ellie!).
I call back, "Yep, we're here, just a sec!" because I have to extract Ellie from my lap, which is no easy thing to get her and all her toys back into her stroller. As I am putting her in I hear someone nearby say, "Hi, I'm Dr. Rivkin!" I get Ellie in and take his outstretched hand. He's smiling a big smile like we have made his day by coming to our appointment. I shake his hand and he has a good strong, but not too strong as to bruise your hand, shake. The kind of handshake that always means sincerity to me. He is wearing a funky bow tie which is also a good sign of a nonconformist free thinker type. Better still he bends right down to get at Ellie's eye level, and says, "Hello there! Nice to meet you!" And the big smile again. Then he offers to carry Ellie's nap sac which I let him do.
We go in his office and he very thoroughly, taking notes, gets our history, asks a ton of questions that range from birth to my history to Ellie's current abilities and medical status. He listens to me when I tell him she can read , understand sign language, and understand all of what we say if she can hear us. He listens and believes me. There is no eye rolling just direct gaze and appropriate questions. He has opinions too because he has read her records (before we turned up).
The great thing was that I didn't need to bring someone with me who has a, you know, the appendage that makes a man a man. He listened to me without any pretense or bias. When I told him that within two weeks of starting the seizure meds Ellie quit eating full stop, he said, "Well, that is very concerning." YES! IT IS! Finally someone with a MD in their title who is taking me seriously!!!
He was also proactive. He noted that Ellie hadn't had an EEG in 2 years and that he wanted her to have one straight away so we can revisit the med question and see if we can't get her eating again. He inquired if she had a trunk orthosis and hippo therapy. He gave me an inside line to call once the EEG results are in so we can discuss meds. He wants to see her again in 6 months (not a year like the other guy). He even introduced us to his team so we would know who to call for what. 3/4 way through the appointment I had told him we definitely wanted to switch to him. I didn't tell him all the reasons why but they are below. I wanted him as Ellie's neurologist because he is:
Proactive,
Thorough,
Open minded,
Detail oriented,
Big picture sensitive,
Good listener,
Straight talker,
Positive attitude,
Interested,
Engaged,
Relationship builder,
Down to earth, (versus the, I think I am a god realm and know everything, attitude many doctors seem to carefully cultivate)
Knows his stuff medically speaking
These are the things that differentiate between a good doctor and a great one.
He was gracious and said the other guy was really smart. And I said, "You are all really smart but we need someone who is more than smart." I think he was kind of chuffed by that but trying not to show it. But he agreed to be Ellie's neurologist.
Toward the end of our visit, I asked him, "Considering all that Ellie can do, the reading, her language acquisition, etc. have you seen other kids with similar issues like her?" I was really hoping he would say, yes, many of the kids with traumatic brain injury and PVL go on to do quite well, or something like that. But instead he said, "No, she is definitely and outlier."
An outlier is a statistical term for a data point that is at either end of a bell curve or when looking at a scatter plot a distant dot far from the other data points. Ellie is such an outlier.
I am glad that she is doing so well considering that. I also felt sad because that means she is rare, which means there is not allot of data on what to expect. There are not a great many books to take pointers from on what to do to help her (though the Doman stuff and Linda Scotson have been true role models). There is no beaten path to go down to help her heal.
Then again, with my creationist view of the world, I wonder if Dave and I didn't dream her up. And I mean that in this sense, from the second she was conceived we loved her and were thrilled by her presence in our life. This great excitement and love was not dampened at all by what happened, no just the opposite. It was strengthened and grew fierce. It informed all we do and did from day one. It fueled and solidified our hope, our partnership to bring the world to Ellie, to see her beyond her ravaged brain, to find her in the catacombs of all that was destroyed and pull her to us. I really feel sometimes that we did pull her out of it all. We have been constant in our attempts to work with her and keep her brain active. We are still pulling her out into the world though we have allot more help in that she goes to a school that meets our standards for miracle making.
In all of this I think Ellie is our dream child. I think there is an argument to ere on the side of hope and intelligence and love. We never held back from her or this challenge, instead we dove in head first without looking back or fearing the depths. I have but to think that in that sort of environment Ellie could do no other than build her neurological pathways that were not there yet (because she was born before the 28 week gestational marker)and others that were destroyed by the anoxic event and forge new ways of neurological function so that she could come out and play with us. She is OUR outlier, our dream child and we will just go on bushwhacking through the wilderness that is our life.
All of this ruminating has been sparked by a recent visit to our new neurologist. I hadn't intended on finding a new neurologist for Ellie, because we have one, had one, kind of. I was not so happy with him. But as life would have it - way, way back here when we lost our first Boston neurologist, Dr. Janet Soul, whom we loved, I had made an appointment with Dr. Michael Rivkin. Because it took a year to get the appointment, I double downed and also met with the other neurologist Dr. Soul had recommended but whom turned out to be so nonplussed by us and so flip... ugh don't get me started, you can read about the dog and pony show dada had to put on to get him to even listen here, though that meeting resulted in no conclusions or actions. After all this time, however, I completely forgot about the other appointment.
Last week we got a reminder call to meet with Dr. Rivkin. Our long ago made appointment was for this Tuesday at 11am. I almost didn't go because this week has been a rough and tumble stressor of a week. Here's why - I'll just list the crap we all had to contend with:
- Ellie's IEP was Wednesday
- Ellie's 3 Year Re-eval was also Wednesday
- Ellie had to get Botox in her lower legs Thursday morning and of course that takes all day (more on that in another post)
- Ellie and I had to meet with our case worker from Mass Health for reevaluation for the nursing hours we get (nursing hours which save us from complete insanity as well as being quite handy when Ellie is sick or having surgery's or procedures).
- Our water heater sprang a leak...
Now on the other side of it, nursing hours intact, the best IEP ever, and Ellie knocking the ball off the charts in her evaluation testing (yes am pretty proud of her) I have time to take a breath and ponder it all (except the water heater - I can't ponder that at all - I will implode if I do - I have handed that off to Dave, hubby of the year).
You can see why I almost cancelled the meeting. But I took Ellie anyway, pulled her out of classes and got us down to Boston Children's. When I met Dr. Rivkin it was definitely one of those watershed moments when I breathed a great sigh of relief that I hadn't blown off the appointment. Like one walking on the edge of a cliff and catching themselves from falling over the edge at the last moment. I can only describe the events so you know why this was a very different meeting for us than our last two visits to the other neurologist.
Ellie and I are in the waiting room having only been 4 minutes late which is saying something and I hear her name called. (This was after they weighed her and checked her height. By the way she has grown 4 inches over the last year and gained 10 pounds! Go Ellie!).
I call back, "Yep, we're here, just a sec!" because I have to extract Ellie from my lap, which is no easy thing to get her and all her toys back into her stroller. As I am putting her in I hear someone nearby say, "Hi, I'm Dr. Rivkin!" I get Ellie in and take his outstretched hand. He's smiling a big smile like we have made his day by coming to our appointment. I shake his hand and he has a good strong, but not too strong as to bruise your hand, shake. The kind of handshake that always means sincerity to me. He is wearing a funky bow tie which is also a good sign of a nonconformist free thinker type. Better still he bends right down to get at Ellie's eye level, and says, "Hello there! Nice to meet you!" And the big smile again. Then he offers to carry Ellie's nap sac which I let him do.
We go in his office and he very thoroughly, taking notes, gets our history, asks a ton of questions that range from birth to my history to Ellie's current abilities and medical status. He listens to me when I tell him she can read , understand sign language, and understand all of what we say if she can hear us. He listens and believes me. There is no eye rolling just direct gaze and appropriate questions. He has opinions too because he has read her records (before we turned up).
He was really clear that he did not think we should take Ellie off her seizure meds. He had read her past EEG reports and told us that her EEG is really abnormal, not just abnormal for someone with type of brain injury she has, but really abnormal. So we stay on the meds a bit longer as much as I hate that. Her last seizure lasted an hour and seemed like it would never stop and is something we can't let happen again as you can see here.
He asked me why I was there, since he didn't think Ellie needed two neurologists. I told him that she needed one good one and we were still keeping our options open since leaving Dr. Soul. He said, "Fair enough."
The great thing was that I didn't need to bring someone with me who has a, you know, the appendage that makes a man a man. He listened to me without any pretense or bias. When I told him that within two weeks of starting the seizure meds Ellie quit eating full stop, he said, "Well, that is very concerning." YES! IT IS! Finally someone with a MD in their title who is taking me seriously!!!
He was also proactive. He noted that Ellie hadn't had an EEG in 2 years and that he wanted her to have one straight away so we can revisit the med question and see if we can't get her eating again. He inquired if she had a trunk orthosis and hippo therapy. He gave me an inside line to call once the EEG results are in so we can discuss meds. He wants to see her again in 6 months (not a year like the other guy). He even introduced us to his team so we would know who to call for what. 3/4 way through the appointment I had told him we definitely wanted to switch to him. I didn't tell him all the reasons why but they are below. I wanted him as Ellie's neurologist because he is:
Proactive,
Thorough,
Open minded,
Detail oriented,
Big picture sensitive,
Good listener,
Straight talker,
Positive attitude,
Interested,
Engaged,
Relationship builder,
Down to earth, (versus the, I think I am a god realm and know everything, attitude many doctors seem to carefully cultivate)
Knows his stuff medically speaking
These are the things that differentiate between a good doctor and a great one.
He was gracious and said the other guy was really smart. And I said, "You are all really smart but we need someone who is more than smart." I think he was kind of chuffed by that but trying not to show it. But he agreed to be Ellie's neurologist.
Toward the end of our visit, I asked him, "Considering all that Ellie can do, the reading, her language acquisition, etc. have you seen other kids with similar issues like her?" I was really hoping he would say, yes, many of the kids with traumatic brain injury and PVL go on to do quite well, or something like that. But instead he said, "No, she is definitely and outlier."
An outlier is a statistical term for a data point that is at either end of a bell curve or when looking at a scatter plot a distant dot far from the other data points. Ellie is such an outlier.
I am glad that she is doing so well considering that. I also felt sad because that means she is rare, which means there is not allot of data on what to expect. There are not a great many books to take pointers from on what to do to help her (though the Doman stuff and Linda Scotson have been true role models). There is no beaten path to go down to help her heal.
Then again, with my creationist view of the world, I wonder if Dave and I didn't dream her up. And I mean that in this sense, from the second she was conceived we loved her and were thrilled by her presence in our life. This great excitement and love was not dampened at all by what happened, no just the opposite. It was strengthened and grew fierce. It informed all we do and did from day one. It fueled and solidified our hope, our partnership to bring the world to Ellie, to see her beyond her ravaged brain, to find her in the catacombs of all that was destroyed and pull her to us. I really feel sometimes that we did pull her out of it all. We have been constant in our attempts to work with her and keep her brain active. We are still pulling her out into the world though we have allot more help in that she goes to a school that meets our standards for miracle making.
In all of this I think Ellie is our dream child. I think there is an argument to ere on the side of hope and intelligence and love. We never held back from her or this challenge, instead we dove in head first without looking back or fearing the depths. I have but to think that in that sort of environment Ellie could do no other than build her neurological pathways that were not there yet (because she was born before the 28 week gestational marker)and others that were destroyed by the anoxic event and forge new ways of neurological function so that she could come out and play with us. She is OUR outlier, our dream child and we will just go on bushwhacking through the wilderness that is our life.
Thursday, May 22, 2008
38th Disability Blog Carnival - Spirituality and Disability
In my understanding of the world we are all ghosts in the machine here to learn and grow in our capacity to love and have compassion for ourselves and others. Choosing to pay attention to the lessons so you get the most out of them requires examining one's world and sometimes asking why it is the way it is. For my part I have skirted disability in my early years spending some time in a wheelchair and constantly tripping over my feet and falling because I was born with severely clubbed feet. I have endured some very painful operations to fix them. Then, years later, I have a baby 3 months too soon and that baby becomes disabled because of her traumatic birth. I can't but help thinking my early experiences as a child of not being able to get my feet to stay under me, being made fun of because of it, enduring long hospital stays and painful medical interventions have prepared me to better understand and raise Ellie. I am not saying in any way shape or form that I know what it is like to have hydrocephalus, CP, PVL or a seizure. But I do know what it is like to have IV's, pain meds, physical restrictions, tight tendons, time in hospital, endure huge amounts of physical pain, and having to rely on others to help you get to and fro. I think knowing these things has helped me demand better care for her as well as respecting what she has to go through from a much clearer perspective.
More importantly in my role today as a parent, I also understand what it is to feel like a burden to one's parents because of these things. My mother was always so exasperated by my inconvenient extra ordinary needs right from day one. That is something I don't want to pass on to Ellie -ever. I think the idea of being made to feel a burden upon one's parents or society is a form of hate. It's a way to say you don't matter why don't you just disappear. I know that this idea of burden is placed on people with disabilities all the time. It's also assumed that because my daughter is disabled, that she is a burden. I am here to tell you that is damaging and not true and a sign of ignorance.
In truth, having a kid with special needs is different in some ways but not in terms of time, commitment, engagement, and the basic all encompassing nature of being a good parent versus a crap parent who takes their kid for granted and does the bare minimum to get through the day building no relationship with them at all.
I do think that having a disability can allow you to develop certain traits that you might not develop if you never encounter any difficulty in life. I do think dealing with disability has informed the way I parent (would parent anyone not just Ellie). It might be that we have been more loving and gentle and appreciative of her because we almost lost her, because there is so much she can't do on her own. I am sure that plays a role in how we parent her. Either way, I feel so lucky to have such a great kid, just the way she is. Ellie is a universe that I am happy to orbit. Ellie is a blessing to me not because she is disabled but because she is my child.
I can never separate the experience of being a mother with that of being a mother of a child with disability. I don't know what it is like to parent anyone else but Ellie. But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism. Because I was ignorant about it all before and I am still learning. In this carnival I learned that the term "confined to a wheelchair" is pejorative. Many of you out there are saying, Duh!. But I am being honest here - now that it's in front of me, I get it, but it wasn't something I realized until someone put it in my face. Hence the beauty of the Disability Blog Carnival.
So is my life some huge set up, a plan of God's? I can't help but see it that way. My freedom of choice is in how to behave and feel and deal within this set up. For me, seeing it this way is important to taking total responsibility for my own attitude and demeanor and not playing the victim, all of which ultimately effects the happiness of a little girl who is the embodiment of love and light and wonder.
That's my take on it.
Many philosophers have thought along with Descartes that "the unexamined life is not worth living". And Shakespeare said, "Know thyself!" To that end the topic for this carnival is about the spiritual meaning of experiencing disability either first or secondhand in this life. I think you will find some very thoughtful and in many cases poetic examinations of lives being lived by the carnival's contributors.
Welcome to the 38th Disability Blog Carnival!
That's my take on it.
Many philosophers have thought along with Descartes that "the unexamined life is not worth living". And Shakespeare said, "Know thyself!" To that end the topic for this carnival is about the spiritual meaning of experiencing disability either first or secondhand in this life. I think you will find some very thoughtful and in many cases poetic examinations of lives being lived by the carnival's contributors.
Welcome to the 38th Disability Blog Carnival!
**Just in this post that I had to include called Spiritual Infringments over at Planet of the Blind by Stephen Kuusisto. Here is a quote: " “Listen,” I said, “I really don’t require prayers.” I stopped for a moment. I needed to hold myself back. I didn’t want to plunge headlong into a theological debate. I didn’t want to say that my permission might not be required for authentic prayer."
***Just in, Laura Gilmore gives us this great post Does Everything Happen For a Reason over at Touched By an Alien: Life As I Know It. Thanks Laura!
Tokah has written some powerful posts in the past and this one is right up there. For those of you who think disability might be the result of sin, check out what Tokah has to say about it. For the carnival Tokah gives us this post: Impairment and Spirituality over at From Where I'm Sitting. Here is a quote.
"My belief in God is the lens I see the world through, it is the deepest and most immovable part of me. One of the few things that is understood about my disabilities from a medical perspective is that there is a lot of congenital involvement. Thus, to be consistent in my beliefs, I cannot come to any conclusion other than this:
God created me knowing I would be a crip."
Elizabeth McClung gives us this excellent, well written post and and well though argument, Thoughts about "praying for me" and "hoping for a miracle" posted at Screw Bronze!. Here is a quote: "When I first became ill I talked and wrote about it with my Christian friends. And I watched as the two Christian forums I participated on quickly responded in a singular way, “I’ll pray for you” while at the SAME TIME, talking, emailing and communicating with me less."
Yanube gives us this post is a response to one of the commenters on Elizabeth's post: Religion, hardship, and belief posted at yet another never updated blog. Here is a quote: In Screw Bronze!, Elizabeth eloquently discusses the way that her old church friends have deserted her, offering weak promises of prayer instead of camaraderie. In the comments, Gaina inquires how Elizabeth can remain "a christian after everything you're experiencing"? As an atheist, I wish to respond to that: Why shouldn't she?
Disability and Language posted at Bad Cripple. William critiques a NYT's article about a mother of a disabled child having a "second chance". William I hope you send in your remarks to the NYT's oped pages because they need to read by a wide range of people. Thank you for this one! Here is a quote: The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults.
Athena, Ivan, and The Integral presents 38th DBC Entry: Our thoughts on Disability and Spirituality « AthenIvanIdx’s Weblog posted at AthenIvanIdx's Weblog. Excellent post. Here is a quote, "So spirituality and religion has a very, very important function in our lives. We although think that our disability -(now correctly diagnosed, might we add. well, as correctly as possible. autism and asperger’s, what’s the bloody difference?)- has a major role in how we interact with our Lord."
Check out this excellent post titled, "chaoticidealism: CP, quality of life, and autism" posted at Report from a Resident Alien. Here is my favorite quote, quite possibly for the year, "Duh: I don't know what it's like to be another autistic person. But that's true whether or not we're functioning at the same level. Nobody ever knows what it's like to be anybody else; we can only imagine. Problem is, some people assume they know."
Meg writes this excellent analysis in: That's Reality, Greg over at Hey Meg. Here is a quote: "I know most people are doing the best they can; I’m sure our story is unusual for those have never encountered disability. I wonder how others feel about the ways in which I respond to them, when they are discussing topics that are new to me. I hope I am gentle, open, accepting, inquisitive, with an attitude that whatever the scenario, it is a part of human life in all its bittersweet magnificence. I guess I will have to work on it."
Myron Uhlberg shared tales of his Deaf Heroes (his Parents) at the International Reading Association Convention posted at Deaf Characters in Adolescent Literature, saying, "Honor thy mother and thy father--check!"
Diana Lee presents Exploring Mindfulness-Based Stress Reduction posted at Somebody Heal Me by Diana Lee.
Catherine presents Pencil In. posted at Charming BB, saying, "Please include." This post effectively captures a very poignant moment.
In Mother's Day Shopping posted at Frida Writes, saying, "The Christian card shop is more scooter-friendly than the Hallmark--so that's where Fridawrites spends her money for Mother's Day"
Teri holds a book give-away in her post: Faith and Disability Book Giveaway at Barriers, Bridges and Books. Teri, thank you so much for this entry!
Sarah writes this informative post about adaptive skiing over at Impossible Universe.
Off topic but tis the season: excuse me, your ablism is in our feminism posted at Sly Civilian
Emily Elizabeth writes about this interesting and hopeful development in congress: Let's Get This Caucus On... posted at Lovely and Amazing
Athena, Ivan, and The Integral presents 38th DBC Entry: Our thoughts on Disability and Spirituality « AthenIvanIdx’s Weblog posted at AthenIvanIdx's Weblog. Excellent post. Here is a quote, "So spirituality and religion has a very, very important function in our lives. We although think that our disability -(now correctly diagnosed, might we add. well, as correctly as possible. autism and asperger’s, what’s the bloody difference?)- has a major role in how we interact with our Lord."
Check out this excellent post titled, "chaoticidealism: CP, quality of life, and autism" posted at Report from a Resident Alien. Here is my favorite quote, quite possibly for the year, "Duh: I don't know what it's like to be another autistic person. But that's true whether or not we're functioning at the same level. Nobody ever knows what it's like to be anybody else; we can only imagine. Problem is, some people assume they know."
Meg writes this excellent analysis in: That's Reality, Greg over at Hey Meg. Here is a quote: "I know most people are doing the best they can; I’m sure our story is unusual for those have never encountered disability. I wonder how others feel about the ways in which I respond to them, when they are discussing topics that are new to me. I hope I am gentle, open, accepting, inquisitive, with an attitude that whatever the scenario, it is a part of human life in all its bittersweet magnificence. I guess I will have to work on it."
Myron Uhlberg shared tales of his Deaf Heroes (his Parents) at the International Reading Association Convention posted at Deaf Characters in Adolescent Literature, saying, "Honor thy mother and thy father--check!"
Diana Lee presents Exploring Mindfulness-Based Stress Reduction posted at Somebody Heal Me by Diana Lee.
Catherine presents Pencil In. posted at Charming BB, saying, "Please include." This post effectively captures a very poignant moment.
In Mother's Day Shopping posted at Frida Writes, saying, "The Christian card shop is more scooter-friendly than the Hallmark--so that's where Fridawrites spends her money for Mother's Day"
Teri holds a book give-away in her post: Faith and Disability Book Giveaway at Barriers, Bridges and Books. Teri, thank you so much for this entry!
Sarah writes this informative post about adaptive skiing over at Impossible Universe.
Off topic but tis the season: excuse me, your ablism is in our feminism posted at Sly Civilian
Emily Elizabeth writes about this interesting and hopeful development in congress: Let's Get This Caucus On... posted at Lovely and Amazing
Sarah writes Paralympians in the News: Josh George, Natalie du Toit, and Oscar Pistorius posted at An Impossibility in an Impossible Universe. Many blogs are covering the Pistorius news, but this post is excellent in that Sarah has put him in context with other athletes.
Sarah also gives us this post on a case that is placing disability, particularly Autism in the quite imperfect media spotlight: Church Files Restraining Order Against 13-Year-Old Boy With Autism posted at An Impossibility in an Impossible Universe,
On the same topic: The ultimate in legal rejection posted at disabled Christianity,
More commentary on the case: Mass confusion: A restraining order and a boy with autism posted at WHEELIE CATHOLIC.
And sometimes you just have to laugh! I don't know what is more spiritual than that!
Sarah also gives us this post on a case that is placing disability, particularly Autism in the quite imperfect media spotlight: Church Files Restraining Order Against 13-Year-Old Boy With Autism posted at An Impossibility in an Impossible Universe,
On the same topic: The ultimate in legal rejection posted at disabled Christianity,
More commentary on the case: Mass confusion: A restraining order and a boy with autism posted at WHEELIE CATHOLIC.
And sometimes you just have to laugh! I don't know what is more spiritual than that!
Damon Rose from Ouch! pens this excellent, well written, well said, humorous post: BBC - Ouch! Disability Magazine - Weblog - Crap News: guy goes on holiday posted at BBC-Ouch! Disability Magazine
Pope Bonkface VIII gives us this humorous post: A primer to the reactions one gets when they mention 'medieval disability studies' posted at Medieval Cripples, Crazies and Imbeciles ... and a Service Dog?.
Pope Bonkface VIII gives us this humorous post: A primer to the reactions one gets when they mention 'medieval disability studies' posted at Medieval Cripples, Crazies and Imbeciles ... and a Service Dog?.
Thank you to everyone who contributed to the blog carnival!
The next Disability Blog Carnival will be over at Emma's blog called Writings Of A Wheelchair Princess the deadline for submissions is June 9th and the Carnival will be up on June 12th and the theme is "If I knew then..."
Great theme Emma! Can't wait to read it!!!!
Monday, May 12, 2008
Shameless Plug and Clarification of the NEXT Blog Carnival
Hi Everyone,
I thought I would write to tell you all little bit of what I would hope to hear about for the next disability blog carnival that is here at Ryn Tales. The topic is Spirituality and Disability.
Spirituality is a topic that touches disability in unique ways. I wanted to write about it and to hear what you had to say because there have been so many crazy takes on why all this happened to Ellie, to us, and what it all means I think hearing from the people who read this blog and those living what is seen as a disabled life could be really great on many levels. First to share and second to once again tirelessly clear up misconceptions about disability and it's place in religion and spirituality.
For example the worst thing I have come across in the pseudo religious and spiritual realm about why this happened to Ellie is that she is paying for somebody's sins. Nice huh?! That was just excellent when that was said to me. Another is that she is the reincarnation of another disabled person in the family history and on and on. I heartily disagree with both points of view and will be writing about that a little but also about the HUGE gains I have made as a person from being in this unique situation. I will also share some of the amazing experiences I had that are definitely in the spiritual realm before Ellie was born as well as from those first touch and go days.
Mostly I am wondering what your life lesson might be if you have a disability or are parenting someone who does. I agree that we are mostly all temporarily able bodied. I think it is the rare person who lives able bodied their entire life to gently die in their sleep. So this carnival might be of some use to us all.
That said, unless your topic is way, way out in the stratosphere (like discussing the migration of earthworms) anything goes. So if you have already written a post, it will be very welcome!
Saturday, May 10, 2008
Mama Bloggers: Exploitists or Family Historians and Community Builders?
Heather Armstrong wrote this great post that I discovered via Lisa, one of my all time favorite bloggers, defending her blogging about her kid. I am in agreement with Heather's point of view that her blogging about her daughter is a celebration of the love and beauty they share in their family. I obviously don't perceive the danger in showing Ellie's picture here to be any greater than taking her out in public in general. I was happy to read Heather's well articulated argument about this.
What do you think?
Subscribe to:
Posts (Atom)