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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.

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.

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.

Saturday, June 14, 2008


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.



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.

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