Ryn Tale's Book of Days:

A person is a person no matter how small...

2012-01-17T16:42:00.006-05:00

There have been some disturbing events recently that I have discovered via my Twitter account. The first involves "dwarf throwing". I am disgusted by this in general. It's amazing that there has been, to date, no prosecution. Even in the writing of this article about it you see the violent offender called a "prankster". Really? Someone who throws another HUMAN BEING (who is not bothering them in the slightest I might add) down on hard ground resulting in them being paralyzed is a "prankster"???? What is unbelievable about this and so disturbing are many things including the obvious a) that this takes place at all, but also b) the reporting of it is almost conspiratorial with the violent psychopathic act itself by naming the perpetrator as a "prankster". Just plain wrong on so many levels.

Secondly, this case made me very sad for Amelia, her family, for all people with physical differences in general, and our society. I hope Ellie doesn't need any organ transplants because apparently people with developmental delays are not worthy to be on the list, not worthy of doctors time to operate (even with a family donor) and just plain not worth saving. Shame on Children's Hospital of Philadelphia (CHOP)! Things like this fuel my fear for Ellie's future when I am no longer breathing or for that matter even when I am. I hope this mother finds some medical help for her daughter elsewhere. Grrrrrr!

If you are interested in chiming in, in a proactive way, sign the change.org petition. They are looking to get 100,000 signatures and were at 21,000 plus at the time of this post.

Picture Description: Ellie playing with new found Fijit friends. Santa was very good to her this year!

Call for Participants!!!

2011-12-19T22:35:00.006-05:00

Hi Everyone,

I am collecting my data for my dissertation on innovation and need your help! If you work in an organization that employes at least 20 people and are over 18 you are eligible to take my survey.

I am studying the factors in organizational life that lead to innovation. The ability to innovate is how our society will advance globally as well as support children like Ellie who benefit from innovations like her voice output device. If you are interested in contributing your knowledge of to this study go to my survey at: http://svy.mk/vDzz2M

To read more you can go to my website: radicalinnovationstudy.com

Additionally if you complete the entire survey you will be entered to win one of three $50 Amazon gift certificates!

Thanks to all!

Ellie is growing up

2011-12-11T11:24:00.006-05:00

Images of today: Ellie in her car seat. This picture shows how tall she is with her head coming up so high. Just last year the seat used to envelop her totally, now she is out growing it. Second image if of Ellie and Dave pulling on a "cracker" at Thanksgiving. The last picture is Ellie chatting with the ducks by the river at the hotel we stayed at this week while they were putting the floor in her room. Even with the low volatile organic compound (VOC) coating it is still pretty stinky! So we were out for a week to get this part of her new room done. Two more weeks and she should be in her new room!

"You don't have to break in two to love someone"

2011-11-22T21:07:00.012-05:00

This is the line uttered by one of my favorite characters in a great story called "What Dreams May Come" (also a movie with Robbin Williams) and that line keeps running through my head when I think about all that is before me to manage lifting Ellie.

My back has three damaged discs already - two are properly ruptured and one is bulging but I think I actually ruptured it too about a month ago. But I didn't go to the doctor only the chiropractor because I didn't have time. See the problem already?

And I keep hearing the line only it now goes "ya shouldn't have to break in two to love someone".

I have dreaded this day and now it's here and it sucks. We wiped out all our small savings to build her a room which is still not done. I got a loan for that as well - so more debt - yay! Our car door does not open very wide so it's a hard lift getting her in and out of it that often leaves my back in bits or Ellie with a bump. This is just not right. I am exploring options of getting a used minivan with a rotating seat. A conversion van is out of the question - just way too expensive. And none of this is covered - nor is any part of her accessible room by insurance or anything. Let's hope neither of us gets laid off.

I feel like we are walking a tight rope and it's a little scary. I am done with trying to be super mom. I will still go to the gym and do the physical therapy and strengthening exercises the back boot camp people gave me. I will keep strength building. However, bird boned as always, I am at my limit. I wish I was some sort of amazon woman body builder type with big large bones that would make lifting Ellie no problem. But I am not and it is a problem that is getting bigger by the day (also great problem to have if you have read my post on counting her weight in grams). I have also thought about hiring a bouncer. I imagine some big guy just hanging around reading the sports pages, head shaved, wearing black, enormous but benevolent and waiting around patiently in between lifting Ellie for me from car to chair, from chair to bed, from bed to chair, from chair to couch, from couch to chair...you get the idea. But that is just too weird. ;-)

So how do I put my foot down and protect my back so that by the time I am 50 I can still stand erect? How do I say no more lifting and still take care of her? I haven't figured it out yet and right now as I write this I am in a bit of despair. Dave is going to be traveling soon and that leaves all the lifting to me. So it seems I may have to break in half to love someone. I am not happy about this. It is energizing in that I will once again have to fight the school people who think it's alright that Ellie ride the bus with people who won't look me in the eye and talk on cell phones the whole time they are driving her. I have to find some way to buy a used car to get the swivel seat thing maybe which means haggling with the dealership which I am not good at. As well as take on more debt which may not be possible.

I am overwhelmed. Ellie is maturing very fast it seems so we have to have that conversation with the doctors too. If this is her natural time to mature ok. BUT if she is maturing too quickly so that her final height is under 4 feet - I am so not for it. My whole goal with all medical interventions she undergoes has been to try to preserve her body to what it would have been had her brain not been deprived of oxygen at birth. The brain is plastic and resilient and nano technologies are coming along quickly. You just never know. And if there is some massive healing in her future I don't want her to end up being less than 4 feet tall - that is just not right. I want her to grow and mature - it's her right of passage. So we need to figure this out too and the truth is - other than the bone age hand scan - it's hard to tell what would have been.

Brain injuries really suck for the record.

To flip the coin to the sunny side, it's very clear that she is making progress in school. Awesome progress and happily so! She "ran" in a Turkey Trot which involved a large, loud crowd and she managed it. She didn't freak out at all. This is literally a first. She is also making progress in her academics and her teacher this year sends home excellent homework and this is a focus. Which is such a balm to me. Why not throw all the academic stuff possible at Ellie and see what she does with it? I hate it when anyone underestimates her.

I also made a connection with someone who really knows the Feldencrais landscape so we will be trying that. Dave researched this electrical stim therapy as well that helps build muscle so we are looking into that as well. It feels good to be once again looking at healing therapies versus solely medical management issues. On that front we are never doing botox again (we have been using it prevent contractures in Ellie's ankles - to no avail I might add) and I regret we did it at all. More on that when we figure this new path out.

Also, my study for my dissertation was approved and I will be collecting data soon and hopefully completing my Ph.D. in March of 2012. Completing that will be like taking a huge bloody thorn out of my side that has been there for the past decade. I hope it will feel good and won't tear too much in the extraction. Writing the lit review was like giving birth so maybe that was the worst of it.

I have to remember that these are all really good problems to have and that it could be way worse. Yet I am restless. Very restless. It's hard to stay present - it's uncomfortable every day.

I also keep remembering this story:

There is a woman that is very unhappy with her life and she goes to a yogi for help. The yogi says, "This is what you need to do, move the chickens into the house with you." She is surprised but complies and comes back to the yogi in one month and tells the yogi that her life is even worse than it was. The chicken's are always underfoot as are the children. They are also really noisy as are the in laws so there is a constant din. The yogi says, "Ok then, now move the cow into the house as well." She complies and goes back to the yogi again but this time after only two weeks. She tells the yogi that she is at her wits end. The cow is taking up any extra room they had and is nibbling on all the rugs and moos really loudly all the time. The yogi tells her, "Ok, move the chickens and the cow back into the yard". She does this. She sees the yogi around town and thanks the yogi for all the help and tells the yogi that her life is oh so much better and she is so grateful. ;-)

Right now with the construction, the dissertation, my re-injured back, the doctors appointments, the search for proper transport - it's all cows and chickens. But I suspect it will get better. Thanks for listening.

Image descriptions:

Ellie in pink winter coat looking for me as she rides Splitty last Saturday

Ellie with feathers still in her hair and ribbon from the Turkey Trot. Also, notably, siting, propped but unassisted!

Happy Birthday Princess Ellie!

2011-11-09T22:58:00.007-05:00

Ellie turned 9 today. 9. I can't believe it.

She had a GREAT day too. She had a joint birthday party at school with her astrological twin Xavier who was born to the minute at the same time. How amazing is that, that these two babies both born out West ended up at the same - one-in-a-million pre-schools?

Ellie's favorite gift was a headset I gave her so she can listen to her iPad or iPod touch or her Voice output device with them. She liked them so much she wore them for the entirety of her birthday dinner even when we were not using any of the devices mentioned. When she was trying out the new headset with her toys she LOVED it!! Many, many giggles.

She also got this great little purple robot that talks back. It's called Willa by Fijit. It's hilarious and I was VERY impressed by the fact that Ellie accepted this new presence into her world readily. Those of you who have been with me for awhile have read stories from the YEARS when any new thing, especially toys, were considered baddies, not to be trusted or tolerated even in the same room. My little girl has come a looooooonnnnnggg way since those sensory integration filled days.

Ellie was smiling all day. She ended the day by snuggling up on me but into Daddy's shoulder - her preferred fall asleep mechanism. I am glad she had a such a great day and thankful to her teachers at her school who threw her such a great party and made her feel very special.

For me the day was a bit melancholy. I am haunted by the day she was born so many years ago. Though I had a very busy work day that included meetings and even a presentation, in even the smallest spare moments I could see certain scenes from that day in my minds eye. The pain and Dave making me go to the ER. Seeing her for the first time in the isolet hooked up to 20 tubes. Dave calling his Dad and pacing outside my recovery room door- freaking out.... And most of all the intense gratitude that she is still here with me, giving me this opportunity to be her mom. That she has done so well and is such a loving, smart, and sweet little kid. I feel grateful but sad too. It's been hard. And lately with building her an accessible room, working full time, and trying to finish my dissertation - we are at maximum capacity.

However, I think my visions of the past are the ghosts of all women of the day they became a mother. Ghost of emotions that run from total joy to complete horror in our case considering how wrong it all went. In the wake of it all, it's never far from my awareness and my gratitude that Ellie is a miracle and a wonder in that she can do all she does and that she is here to do it.

Trinity's Tree

2011-09-27T14:13:00.000-04:00

The best response when you make a mistake

2011-09-22T22:28:00.003-04:00

Ellie and her teacher were reading a book about a little boy who accidentally fills the washing machine with dish soap creating an avalanche of bubbles and foam throughout the house. Ellie's new teacher Mary was evaluating Ellie's reading comprehension. She asked Ellie, "What would your mom say if you filled the house with suds?"

Ellie told her that her mom would say, "I love you."

So true. ;-)

That is definitely the first thing I would want to hear too. When we make a mistake we know it for the most part and for some of us the inner dialog may be punishment enough.

Defense

2011-09-17T21:43:00.007-04:00

Carry on.

Send me any good vibes you can on October 3.

*Photo of the massive tree Irene threw 10 feet away from our house in our back garden. It took out his apple saplings and made a deep trench in our hill. We are lucky it wasn't worse.

Derailed

2011-07-26T13:37:00.004-04:00

My plan was to work on my literature review from the moment Dave and Ellie left for school until I have to pick Ellie up and then come home and work again because I have some help looking after Ellie after school.

Actual events of the day: Ellie wakes up, can't eat, pale, dark circles. Migraine, accompanied by vomit, pain, restless tossing and turning attempts to sleep. My role, administer love, care, meds, and relief. Relief also means holding onto the pressure points on her feet for long, long stretches to relieve the constant tremors in her legs and feet (pain/stress induced muscle spasms).

And so it goes. Am trying hard not to get too cynical about ever finishing my dissertation within the tiny window of reprieve that will only exist between today and May 11. ;-(

The 7 Billion Faces of Normal

2011-06-22T21:15:00.011-04:00

perspective |pərˈspektiv|noun

1 the art of drawing solid objects on a two-dimensional surface so as to give the rightimpression of their height, width, depth, and position in relation to each other when viewed from a particular point [as adj. ] : a perspective drawing. 2. a particular attitude toward or way of regarding something; a point of view

I want to hold a million different perspectives in my heart and head. Having just one is so limiting. Sometimes I get stuck in my one perspective and it's a small world when that happens. A brick is only a brick.

I rather live in a world where a brick is a brick and a bookend, a block, a paperweight, a sculpture, a plate, a step, a footrest, a prop, a doorstop, a scratching post for the cat I don't have, a shelter for small things, cookbook holder, a gift, a walk way, a yoga block, a pillow, a stepping stone, a foot warmer on cold nights, a pan to heat up food, etc.

I want to have a million perspectives so I can see my world from as many angles and know they are pieces of the truth. Instead of looking at all the limitations I want to see all the possibilities, all the functionality and beauty that is right in front of me, all the amazing miracles. Instead of trying to clear all my "filters" or lens or perspectives, through which I interpret the world, I want to have no perspective and all perspectives outside my own simultaneously. I want to be able to look through a million different lenses, be limited by none of them, and be able to shift between them as easily as glancing up at the sky.

Won't you join me?

Carpe Diem!

2011-05-20T23:22:00.001-04:00

Carpe diem, quam minimum credula postero.

Seize the day, and put no trust in the morrow!

Picture: Ellie dancing.

The Price of Admission

2011-05-09T17:54:00.012-04:00

The weekend before last I met my two sisters in Washington D.C. for our first ever girls weekend away. I have been envious of Billie who does this from time to time with her friends. She has been such a great role model for me in terms of how to deal with all of this, times two no less, with grace and self care. So when my little sister suggested it, instead of feeling too guilty to go and too worried to leave Dave and Ellie on their own, I went. It was a milestone weekend on many levels and a healing thing between the sisters. Ellie also got even more attached to Dave and gave me the cold shoulder for more than one day....upon my return. But that is another story.

We went to the Natural History Museum looking for Ben Stiller, who sadly wasn't there though his dinosaur buddies were. I can't wait to take Dave and Ellie there. It is so clean and everything is completely accessible and viewable from wheelchair height. The Boston Science Museum which is not as clean or as accessible sure could take a leaf out of the Smithsonian's book!

One thing that really struck me was an installation of a Neanderthal male skeleton. It showed that he had a severe head injury. The back right side of his skull was bashed in. However, he lived many years beyond his injury and the notes on the installation said he was well taken care of by his Neanderthal mates. This was some proof my heart needed. Amy Mullins in this wonderful talk references that Neanderthals would carry their wounded and disabled for many miles and kept them alive and with their groups. Here was proof of that. What does that say about their society? Life was tough back then to be sure and yet they took care and effort and scarce resources to keep their own together even after horrible injuries. What does it say about our society who for years locked similar individuals up in institutions and created an entire infrastructure that is less than accessible to all? The proof of Amy's reference gave me hope. So when I call this post "the price of admission" I am referring to all the things we do for Ellie and others do for her to help her be with us. A T-ball game complete with volunteers to help push the chairs and engage the kids. A room on the same floor as the major activities of the house so Ellie can always be with us and we with her. A $7,000 voice output device that MassHealth paid for so Ellie can talk to everyone because she can't make her mouth and vocal cords do her bidding in order to speak. It's the price of admission. I am happy to pay it. We have been very fortunate to have found advocates who work tirelessly to this end because in today's society there are many barriers. I was delighted to find evidence that in the distant past, there once was a society who happily paid it too.

This Sunday Ellie played her second T-ball game of the season and got MVP with 6 runs and a positive attitude...kind of. She didn't like the wind or the slow pace of the game. She wanted to be slightly more hands on - like literally get to touch the baseball and throw it. Her favorite thing is batting and then "running" to the bases. It's all go, go, go! We just received her voice output device and I think I need to program it for T-ball to say things like: "Batter, Batter!" and "Let's get the ball!" and "Go, go, go!" This year so far the game was moving a bit too slowly for her. We recently saw Ellie's eight year old cousin who also experiences sudden bouts of boredom. It's always awesome to see my niece, who I adore because she's great, and she affords me the "typical" kid comparison (though truly I think she is exceptional and words are so darn limited - but I hope you know what I mean) always teaches me loads. Turns out eight year olds have low boredom threshholds and are given to spontaneous bouts of sulking turn whining...;-) Ellie, engaging in said behavior, in this sense is acting her age. Ya gotta love that.

T-ball overall has been very, very good to Ellie and us. So far she has a glove signed by Ben Affleck and a ball signed by Big Pappy. Not bad for an 8 year old. The pictures are of said signed glove and Ellie celebrating a run with her two buddies. The volunteers from the high school leagues are awesome and Ellie gets a lot of attention. We get to watch and take pictures and cheer her on like mad! It feels as close as we are ever going to get to a typical outing and so it's a novel and fun because I get to chat with other moms and dads and no one pulls the pity face. We are all in the same boat and have an hour of little league T-ball like some many other parents. It's just that our hour is an unexpected gift due to the efforts of Marie Shea who started up the whole thing. Thank you Marie!

We are at the magical over 4o pound plus mark and have to quickly get our act together regarding home adaptations and a wheelchair van. I hate those words "wheelchair van". But nowadays they are not the hollowed out deathtraps they used to be. Turns out you can convert any minivan into a wheelchair van for about $15-30k and sometimes find a used one... see here. If that doesn't raise your blood pressure, then you can also figure in the cost of converting our back covered patio into a downstairs room for Ellie. A room that will fit her bed, wheelchair, and an adapted bathroom with a ceiling tract.

So it goes.

Today we met with a lady from an agency that helps parents navigate these expensive waters to raise funds and find the right people to help. It's a whole lot of help you have to get to do all of this. I am overwhelmed. Sometimes it's hard to ask for help. Edgar Schein's lastest book, Helping: How to offer, give, and receive help. goes into the differences between the helper and the helped. It's a good read on many levels especially in light of my career as an organizational psychologist on one side of the helping equation and my life on the other side of it as a parent of a quadriplegic kid.

To reframe, the good news is that Ellie continues to grow and develop. I kid you not when I tell you that in the first months of her life we counted her weight gain in grams. Grams. Do you realize how little that is?! Each gram she gained was an affirmation of life. One tiny bit of mass that was building up her tolerance to this physical world.

Last year she gained 10 pounds which is 4535.923 GRAMS!

In retrospect to have the issue that she is getting tall and heavy is a fantastic problem to have. A really great one. Once I get over the heart stopping cost of it all and go into creative problem solving mode I am sure between Dave and I and all this guidance we can work it out. The start of things is sometimes when they seem the most challenging. I know from my students that learning is hard and I now have to learn this whole new vista of conversion vans, home modification loans, door sizes for wheelchair access, side loading versus rear, etc. What is that new mantra everyone is saying, stay calm and carry on...yep, that's about right.

Those of you who are reading this, if you have direct experience, please weigh in on your thoughts regarding rear or side loading vans. Which do you prefer?

Stay tuned.

Conversations with Princess Ellie - 3AM Style

2011-04-16T22:56:00.005-04:00

Ellie has been getting up at night for about one month now. Almost every night and seriously people I don't know how Dave and I did it for so many years. We have had about a year of her only getting up a few times a month which is like a huge vacation for us after her being up every night and vomiting or being sick and being in pain and before that when she was really little, we would be up with her to keep her breathing...good times.

Her being up again...kinda sucks. She started waking up I think because she is cutting a tooth. She has one really cute adult size front tooth and the other is taking ages to come in but has started to in earnest over the past month. Also, she gets up because she is growing. I was never a night eater as a kid but Dave was - so it's his fault! His gene pool that says, "must have full tummy to sleep!".

So we have been feeding her at night...

Ellie's first Pedi, told us when she was little, if you feed her at night you will train her body to wake up at night to be hungry and need to eat. Now all of you parents out there with kids that are on a continuous drip because your kid needs the calories - this does not apply to you. We have been there and when Ellie was on the drip her reflux was so bad that she woke up every other hour. That is how we spent the first 2.5 or more years of her life. So if you are living that my heart goes out to you.

Now that Ellie is bigger she still wakes up from reflux but also due to hunger and like all well trained NICU parents we get up, feed her, hold her up so the acid goes down and in doing so also end up playing with her. You just feel bad when Ellie is in pain and then she innocently signs "iphone" and you find yourself giving in and before you know it (especially if you are the dad of such an adorable and at times distressed Princess) you have set up her favorite seat and have a video going along with a hot meal all at 3am until 5am...and it starts to get regular.

Gah!

Two nights ago when Ellie was up, I went in to her, because, oh and this is another thing about raising a kid who has been known to have seizures, and is at risk of aspiration and can't sit up on her own, "cry it out" is medically NOT an option. We can't not go in. We have to check. I go in and I hoist her up on my lap - which takes me a try or two because she's heavy now, and I am annoyed and I say, "Ellie, why are you up? What do you want?" And she looks right at me and signs quite confidently, "iphone".

I say, "Ok let me get this straight, you are only up because you want to play?"

She signs, "yes!" Like, well done Mama, that's right!

I then proceed to read her the riot act:

"Ellie, you can't wake up in the middle of the night just to play any more because Mommy and Daddy are old and we need our sleep. You need your sleep too because you are a big girl and go to school. Mommy is working on her dissertation and needs rest to do that well. When you wake up at night from now on we are not going to eat or play. You are going to have to eat enough in the day. We will always come to help you and if you are in pain or sick we will hold you and help you until you feel better. But you can't get up at 3am any more to play. I love you."

I said all of this pacing each word and pausing between sentences. Sometimes between the sentence she would sign, "iphone" but after the third sentence her sign was more of a question, "iphone?" accompanied by a raised eyebrow.

Then I said, "I am going to hold you for 2 more minutes and then you have to go asleep" To which she reached down to touch her pillow to indicate for me to put her back on her bed. I go to lift her off my lap but she says no and holds my arm tight...

Was that a bluff?!

Ellie's got some eight year old chops to be sure! Ha! (This is the part of me that is always routing for her to give me a hard time and show that spirit and intelligence - that part of me LOVES this!)

I say, "Ok one more minute then."

I hold her for one more minute and then put her on her pillow and tuck her in and she grumbles but roles on her side, inserts thumb and still grumbling acquiesces to our new program of sleep through the night.

Wish us luck because the next stop is super nanny!

Conversations with Princess Ellie

2011-04-12T10:54:00.005-04:00

Ellie has a definite sense of herself as a person. I don't think everyone does. I learn about her perceptions all the time. I look forward to the day when we can have even more conversations and that day is coming with her Dynavox Maestro that is on order though it is taking a long time.

Ellie comes home from school (I or one of her PCA's drive her) and she lays down on the bed to stretch (sitting when you can't do so on your own all day is really hard on her back) and plays with her favorite toy the Vtech Sing and Learn Globe. Often, once I have schlepped her and all her stuff in the house, I sit down beside her and ask her about her day. Typically she is in full on conversation with her "globee". I know I am interrupting. They talk or Ellie talks to globee. A lot. It's funny and cute and I wonder if I could understand her singular, Princess Ellie language, what she is talking about.

Many of the things I find out about her are from me asking things like: what's your favorite place on the globe?, what's your favorite flavor?, color? did you like this or that? I realize this form of communication is imperfect and sometimes the question leads the questioned. But it's what we've got right now so I will take it.

On one of these days after schlepping I came in and said, "Hey Ellie belly, Boogalu, Little Boo, Princess Ellie I am so happy to see you!" Ellie has a lot of nicknames. She looked at me and laughed. Sometimes when she looks lines of conversation form in my mind. It's hard to describe but body language is 75% or more of conversation. And Ellie communicates just like anyone else in this way. So it occurred to me from her look to ask her, "Ellie, what do you like me to call you?" And I held out my fist and as I extended a finger each one represented a choice. This is our weird multiple choice style communication that I hope ascends one day into a true dialog. So first finger out was "Ellie-luv" Second was "Boogalu", Third was "Princess", Fourth was "Beautiful" and Thumb was "Ellie belly". Ellie listened silently and then quickly picked "Princess".

I said, "You like me to call you Princess? You like that the best?" She signed "YES" with great enthusiasm throwing her yes sign up high over her head.

Princess it is. ;-)

Life after 8 and other news

2011-04-08T17:05:00.006-04:00

When Ellie was little I would search the blogosphere for information about kids with CP and multiple special needs and I would always find that the blog ended when the kid was about 6 and it was maddening in terms of outcomes. Like, what happened to them? How did they turn out? What does this mean? And of course the smaller voice whisper-shouting, "I need to know how this is going to turn out!! Now! Please?"

But now that Ellie is 8 I am there in the middle distance of her childhood. I have a lot of answers I agonized over when Ellie was under 2. And, obviously, there are still a lot of answers I don't have, like what will happen to her when I die? Which, let's just be honest here, is the scariest, most upsetting, soul crushing question of all.

I still don't feel any cheerful carefree optimism about that. Not that there is nothing to be optimistic about. Not that there won't be people who love her. Not that there won't be amazing outcomes. I don't feel optimistic about that because currently that is not how I am made - on that topic.

But at eight, and maybe I should have learned to trust more, I can tell you many of the fears I had when she was in the NICU or at ages 1 and 2 are gone. She is not a "vegetable" and well beyond that she is the coolest, most beautiful, smart, funny little eight year old I could want. I am happy being her mom. She goes to school. She has a life and there are other people in our world that love her and us. She rides a horse for crying out loud! She EATS. She is growing and gaining weight. She LEARNS and loves and laughs - a full belly laugh now that I really must record and put on this blog because Ellie's laugh would make the most stodgy, serious, kill joy of a person laugh too.

But why did all those other bloggers stop writing? I think I know. Time. Now that Ellie is so much better there is far more to do outside the home. Instead of keeping a vigil over her sleep (where I would find myself writing) I am taking her to ride Splitty or to school or to the museum or to the beach or to grandma's house. Instead of holding her while she is sleeping off a brain surgery we are dancing around the house burning up all that enviable eight year old energy that is seemingly inexhaustible or we are learning at the computer or working using her "voice" (which I need to post about). Or we are eating - which still takes considerable time but at least it is by mouth with such non-exotic things as Mama's Spinach Pasta, Green Goodness, or Eggy Pudding. All of which are made fresh and with ingredients that are off the shelf versus ordered from England. For those of you who have read through this blog (which is amazing if you have) you know what I'm sayin.

Also, because she is well enough to do these things, I am working more, far more. At this point in life I am finally getting to pick up the wreckage of my pre-Ellie life. And wreckage, be assured, is NOT a strong word or an exaggeration of any sort. A big chunk of that wreckage has to do with my dissertation and doctoral degree I was making revisions on when Ellie was born. Imagine meeting all the requirements for a 4 year Ph.D. program (classes, internship, entire dissertation) and then not finishing? In short it was a hard, bitter pill I was never able to digest or synthesize. I tried to mediate it away, to get Zen about it, then go all fate/wasn't my destiny on it, etc. Tried to forget. But I couldn't. And then by some miracle of good karma - because it seems apparent that I must have a little built up somewhere, that opportunity is on the table again. I am being given the chance to resolve this - to finish it - to complete this dream. So of course I a sitting here procrastinating and blogging to all of you about it.

What this made me realize though is that we are in a different phase of life. The baby phase, that I thought would never end (where they don't sleep ever and your child is total care and for us that meant so much more than with a typical kid) has ended. Ellie is still "total care" but...she eats (not on her own but 99% from a spoon), she goes to school every day, she has autonomous play for short periods, she can sit alone (with support) which is a big change from having to hold her head up so she wouldn't stop breathing. In short, life is better. But busier and taking place more out in the world. It's nice to be back in the world though I must say it was a slow and painful process getting back out into life. Even so it was worth the journey.

Now to find a balance and pace for this next bit of life. I am not sure what it will hold nor am I making any inane predictions that all will be well, considering all has happened, that would just be stupid. There is one thing I learned from this whole thing that pertains to this post and where we are now and it is that the best way to spend your time is being present and appreciating by simply being awake (truly awake) to your own life in the moments it is happening.

We shine through our broken bits

2010-12-18T09:24:00.010-05:00

I remember my friend Julie once commenting here that our broken bits are the places that spirit can shine through. I loved that. And when I say broken, I do mean parts of us that are changed forever. I don't mean parts of us that are bad. Ellie in many a physician's and most people's view has a lot of broken bits mainly in her brain. I remember when she was born so early feeling guilty like I had broken my baby. And yet, here she is 8 years later, signing with Santa, rocking out to TMBG and engaging the world. She is powerful in her world and has made my world a place I want to be in all the time. That's powerful and important and something that makes the world a better place.

A student of mine quoted Emerson in response to seeing an Aimee Mullen's Ted talk. I just read it in grading their work and had to pause and reflect - here, out in the blogosphere,because that's how I roll. Emerson said, "Challenges are what make life interesting, overcoming them is what makes life meaningful." Aimee Mullins, in her TED talk on adversity, defined adversity as change we have not yet adapted to.

There seems to be a key in there that is particularly germane to understanding the quality of life I experience raising a child with special needs. Different but meaningful. It's a meaning packed life every day and sometimes in this way, intense. But somehow life wants me to get this message. I saw a movie recently, and of course, Hollywood can glamorize anything, but in the end the guy chooses to love his girl, despite her huge challenges which will become his challenges. He tells her he doesn't want a life where their biggest challenge if feeling guilty over having a cleaning person or driving the right car. Instead, having a life that has real meaning.

So how do we constantly make meaning in our life? For me, when Ellie takes a step, makes a small leap, cries, hugs me, or eats, there is meaning there and we witness it via love, sweat and tears. I am not sure I have any answers but I am struck by these questions: what is a meaningful life? What is a shallow one? Do we oscillate between the two simply based on our level of engagement? How does any of this help us experience love and happiness and the feeling of being connected? How resillient are we?

Picture: Ellie signing Thank You to Santa (who also knows ASL!).

Eight is GREAT!

2010-11-13T17:17:00.004-05:00

I can't believe she is eight! I can't believe all her NICU buddies are eight! I can't believe it's been eight years since her birth. That just seems so incredible. Several friends and family have said the same mantra, " I can't believe she is eight." That short sentence does harken to the fact that is was never a given that she would ever be eight. Against all odds we are so blessed!

Last year Ellie, around this time, actually late August until late December was in and out of the hospital constantly with we didn't know what except that it was neuro and involved her being in lots of pain and me being very scared, tired, etc. Turned out it was abdominal migraines and I think side effects of coming of Depakote.

This year, knock on wood, things are going much, MUCH better. Thank you to all the powers that be and mostly to Ellie herself for being a consummate warier princess!

Last year, because of all that, I didn't do the montage. This year I will but not yet. First I have to make a chocolate cheesecake for her pirate party tomorrow (She eats pureed food so I thought she might be able to handle cheese cake). There's an idea, make her a cake she can actually eat... only took me 8 years....ah well. ;-)

We are having her party back at home this year. Last year was great at the ballet studio but since then that class was cancelled and the locaton was so far flung most people could not come. This year we are staying home, which is probably one of Ellie's favorite places to be anyway. Dave created a family pirate treasure hunt, complete with clues and lots of Ahoy theres! and ARRRRGGGGGHHHHS! etc. I get to make food for kids and adults which is perfect. My parent friends deserve good nosh as much as their adorable babies who are not babies anymore but 8 or close too! Yikes!!!

Pictures soon to come of many things as we have made progress on the body jacket positioning front and new style AFO's and of course Splity.

Picture description: Ellie wearing her cousin Halle's sparkly hat sitting with Mama in a southern "Mic O'Donnell's" so coined by her cousin Henry waiting out a squall while on vacation this last August.

Pain in the Back

2010-10-04T22:12:00.002-04:00

Ellie came home from school early today in a lot of pain in her back. I am not sure how this happened and of course have been wracking my brain scouring every positional memory I have of her over the last week. It's her lower back and she can't lie flat on her back without a lot of pain. It hurts her to sit too. She constantly keeps moving to try to shift her weight and find a comfortable place. It's hard and she is in pain - which is not good.

7 years old with a hurt back. That's just wrong.

Connecting in a web

2010-09-18T22:21:00.006-04:00

This November Ellie will be 8. 8! Though, my brain just reminded me as I wrote this, "Well not really 8, not until February when she was supposed to be born!" Do any of my readers, who are parents of preemies, ever do that kind of self correction? Does it ever go away? ;-)

Just the same she will be 8. She is huge (for Ellie) at 37 pounds and so tall that when I pick her up her legs hang well down past my knees.

It will also be roughly 7 plus years since we moved here. About 6 years since I quit my big corporate company that so kindly moved us out here so that Ellie's shunts could be made right by Dr. Gumnerova at Children's Hospital Boston. Ellie is starting her 5th year at "new school" (not so new any more). And we have lived in our own home for 6 years.

I find myself amazed at all this depth in my life, all these roots. The fact that I have lived in the same house for so long in the same area. Staying here, in children's medicine mecca, is necessitated by Ellie's needs so it's fine. Ellie's needs, as many a mother comes to find, are exactly what I need though not always what I could ever imagine.

The best statistic is that it has been a few years (knock on woods so the tree gods can protect us!) that Ellie has been truly well. I know we had a bad stint for many months this time last year. But that bad stint did not end up in operations, brain damage, or other really scary things like what we have faced before. And though it was bad, because she came out of that healthier (despite the migraines) I still count it as a good year. After all she did get off her seizure meds. She did start eating full force. She did go to first grade. She also, bless her beautiful soul and ever healing brain, start to sleep with some regularity. So many blessings.

I have been struck by the richness of my life and all the beautiful growth coming up from these roots we have inadvertently laid down. We truly didn't mean to. We said, we'll just stay to Ellie's health gets manageable. Then she found "new school" and now we are quite stuck. But by being stuck in a situation where we had to reach out into our environment to survive, we have built something despite ourselves. All these connections are like a beautiful glittering spider's web hung with morning dew in the sunshine.

When we moved here we had no friends. We had people we worked with but didn't know well. We felt very alone. It was a harsh and lonely shift from our very full lives in Los Angeles complete with great friends and colleagues, who are, let's face it, also friends. That's LA for you though. Very different from here. Very different from here was a tome I chanted for the first 5 years here.

Yesterday I walked through my yard, late at night, coming home from work and I noticed how I wasn't afraid. At all. You would never feel that way in LA. I would always felt wary and never lingered between car and door. But last night, I smelled my roses and looked at the moonlight on their white petals and I was startled to realize that I was actually starting to like it here...a bit.

I experienced this same phenomena in Los Angeles - hating it for the first few years and then gradually loving it. See the pattern? Now I realize that there is a survival mechanism in there - adapt or suffer I believe is the technical phrase for it. Even so, seeing it kick in I realized that it's not where you live, but all the people you feel connected to that make a place great to be. The fact that our web of connections has expanded beyond the hospital is only possible because Ellie's brain continues to heal. We are really lucky that Ellie's path has mostly been on an upward trajectory. The fact that our connections have so much depth might, in fact be because Ellie was injured at birth. That has changed everything but not in the way you would typically think.

Cold Turkey Java

2010-09-14T21:38:00.003-04:00

It's been a long time since I wrote a post under the label "Batshit Insane". I think that is because when I work this much I am not as funny as I am when I am working less...very sad indeed.

BUT, for the record I have given up coffee - successfully. I haven't had any for over 2 weeks and don't miss it. I still have one cup of earl gray tea in the morning and the occasional soy chai latte but they effect me so much less than the coffee did.

Me and coffee are pretty much done. And I don't miss the nervousness, the extra sweating, the rapid heartbeats, the skin breakouts, and the sleepiness it was causing me! So what was once so hard to do as you can see here, is now done.

Gotta look for something positive after this long afternoon!

Picture description: The de-coffeed me - being cheeky sticking my tongue out at Dave and now all of you...

Livid

2010-09-14T16:44:00.006-04:00

Livid = a perfectly round, white, raised area of skin on Ellie's ankle = pressure sore.

Livid = me after hearing that, once again, Dr. Webster did not put enough padding over the bones on Ellie's ankle.

Now, my baby, is the proud owner of a matching set of pressure sores. One for each ankle.

I feel sick as I write this. GRRRRRRRRRR

Lessons, what are the lessons? What can you learn from my lameness? Oh, here's a few that also fall under the welcome to my world category:

#1. NEVER allow one parent to go alone to a casting procedure no matter how many other doctors appointments you are balancing with work. I went alone the first time and Dave took Ellie alone to the second. There is just no way to advocate for your kid when they are freaking out about being casted such that you are entertaining them so they stay still and so that they are less freaked out, while in the meantime the doctors are telling jokes to one another as they forget to pad my daughter's freaking ankle!!

#2. NEVER forget lesson #1.

#3. Just because a doctor is good in the past doesn't mean they will stay that way. I am so dissappointed.

#4. It takes roughly 6 months for a pressure sore to heal - we learned that from the first one - and I think I am being generous there as it is still not totally healed.

#5. Something about never losing one's vigilance and other things I am saying in my head right now as my conscience gives me a substantial beating.

#6. Maybe if a doctor screws up once you should fire them and find someone who knows how to properly pad a cast! Maybe something about forgetting about doctors altogether.... not sure if that is realistic - but I am really mad right now.

After Action Effects:

- Further muscle atrophy - we are 6 months and counting in now - looking at a year total

- Loss of faith in doctor

- Massive mama guilt

- Continued dusting of unused gait trainers

- Ellie losing her excitement over using said gait trainer to make her way around the house on her own speed.

- Potential decrease in bone density for lack of weight baring

Above is a picture of the the pressure sore she got the one time we tried serial casting. It doesn't look much different today.

I am going to take her to as many hyperbaric O2 treatments I can afford (at $200 a pop that means not all that many) to see if that will help. Also posted is a picture of Ellie in her gait trainer, months and months ago. I need everyone to remember that she used to be able to do that. I need to remember that we used help her practice walking in her gait trainer 4-5 times per week. I need to remember we even brought it with us to my mom's one time to show them how well she was doing with her walking. That during that same visit she laughed and walked in her "Pony" for hugs. Just this Sunday Dave, Ellie and I were at the mall early in the morning and Dave and I were commenting on how quiet it was and how smooth the floor is and how we would have to take Ellie there to practice walking as soon as her cast was off. So much for that plan.

Poor Ellie.

I feel like the worst parent in the world.

I am so overwhelmed right now.

It's what's happening on the inside that matters

2010-09-06T19:36:00.011-04:00

Today I visited someone who has a heck of a time of it, in their own mind. We will call him George. As we were interacting and I looked around George's house with it's run down, dank vibe and realized how miserable they must be inside. The state of decrepitude of their house was not due to the fact that they were poor or indigent in any way. They are in fact, very intelligent, have their full faculties and are very wealthy. I realized via a juxtaposition of a person close by who is similar in demographics but the opposite in terms of what they were presenting to the world. This person's home was vibrant, filled with light and people, laughter and music. It has a sunny, happy vibe. Observing this stark contrast I had a realization that a person's home is a reflection of their inner life (that has nothing to do with wealth) including their attitudes about the world. George and his house embodied a lack of forgiveness for his own human frailty. The evidence for this was everywhere from how he mistreated his own body to a kind of cheapness of spirit and lack of generosity that has isolated him from all who would try to love him. It was a sad realization. It also made me realize that we can manifest a life however we wish.

What I mean by that is, that our life, the very quality of it seems to start inside, in our own minds. You are the creator of your own day to day world. I mean this in the pure sense of how you are going to feel about every event, every interaction and every choice you make, moment to moment. When you think of it that way, there's a lot of creating you get to do. To be clear, I am not talking about destiny or the fact that some things in life do indeed happen to us or as one of my favorite people likes to say "for" us. NO I am not thinking about that. I'll leave that to God and the higher powers that be.

It's the control of the moment to moment quality of life I am talking about as I have recently had a realization about this. Which is kind of amazing considering what a long hard road it has been these last 7 years. What I am actually experiencing in a moment to moment conscious enough to do something about it way is that there's choices every day that I get to make about how I want to be. They start in my own inner world. I think I turned a corner this summer in that respect. I found my own inner voice telling me at an important juncture to take it one step at a time. That I didn't have to figure it all out in one go. It was this whisper of kindness from a place I am not used to - it was from me. It said, take it at a pace that doesn't hurt so much. I needed that and knew that this gift came as a side effect of living a conscious life. I wanted to say aging there but it's more than that. George is over 70 years in age and many experiences with life that come with aging hasn't helped him live life at all. He is still pretty rotten at it. Never venturing far from his TV or house or life long habits of self loathing. Very sad.

But this inner gentleness I felt was so incredibly unexpected and soothing. I have felt so much pressure to get it right for myself, for Ellie, for Dave, for our life. And a lot of that pressure has amounted to good things accomplished but also a lot of stress. Recently I have remembered to take a deep breath and be still. I haven't made time for that in awhile. Also, Ellie has been teaching me this summer to chill out and laugh. At one point Dave and I were discussing something stressful about our mortgage and she looked at the two of us and laughed. We must seem ridiculous to her the way all middle somethings do to young children and wise old people. I loved it though, that she laughed and I felt relieved as she was reminding me that it's not all such a big deal after all.

I feel like Ellie is the person in this world who keeps me most grounded, in the present and loved. She rewards me all the time, with hugs, signing I love you, smiles, laughs, and the fact that she is growing up and doing all kinds of amazing things no one ever thought she would be capable of. This summer in visiting her 7 year old cousin it was clear that she is very 7 too. That is an exciting discovery. That it was a surprise is due to the fact that she can't tell me directly what is going on inside of her. So when her cousin asked her about things I would have never thought about and Ellie answered them. When her cousin watched Hanna Montana, Ellie did too, without complaint. This was a revelation. it was clear they were on the same page in many ways. That was so incredibly cool.

The best thing of all that Ellie has given me is the fact that I have not felt one moment of the deep and seemingly unending loneliness I felt almost daily, every day of my life until the day I was pregnant with her. I think in reality I am the one who has the most to overcome versus Ellie. She is happy, curious, loving, confident, and present. She's a good teacher. I wonder if all children are teachers for their parents too? Either way, it's really her who is saving me all the time, not the other way around.

*Picture Descriptions:

Ellie with Dave just after riding Splitty

Ellie concentrating

Ellie laughing at her Uncle Braeden in CPK

Ryn Tale's Book of Days: Voted Top Cerebral Palsy Blog

2010-08-21T09:44:00.002-04:00

Presented by: Medical Assistant Schools

This award was created by the Medical Assistant Schools dot org to round up great blogs on CP. Blogs are nominated by their readers and then there is a committee that reviews the blogs and makes the final decision based on their assessment of blog content. Ryn Tales was in the top 20 of all the blogs nominated. Thanks to my readers who nominated my blog!!!

Spammed

2010-07-28T09:33:00.003-04:00

Hi Everyone, I keep getting spammed by comments written in chinese with links to asian porn sites. I have my comment moderation on including the word decipher thingy. But the spammers keep getting through with 3 or so comments posted per day! So every day I am moderating 3-4 of these types of comments which is getting old fast.

Is this happening to anyone else and did anyone find a way to stop it?

Nic Nac, Paddy Whack, Get Ellie Atop a Horse!

2010-07-09T10:10:00.013-04:00

Nic Nac is a painted pony. He is recovering from obesity and in need of exercise because his rider outgrew him.

Ellie is a seven year old girl who needs: to loosen up her hips, weight bearing exercise, and therapeutic riding for gait training in the hopes she will one day walk.

It has been a match made in heaven. We have been, on and off for four years, looking to get Ellie onto a horse. The doctors have been recommending it. Our first calls to places that advertised either hippotherapy or therapeutic riding were met with 5 year waiting lists and huge fees. I have done four searches in all for this service and been met with obstacles. Stables either didn't have space, the right horse, were intimidated by Ellie's shunts, etc. The other big obstacle and the reason I didn't plow through these obstacles, was that I didn't know what it looked like. I couldn't imagine in my head Ellie safely riding a horse. I rode horses a very little bit as a kid. My neighbor's horses. And got bucked off once hurting my arm. All of it was totally unsupervised.

That's what in psychology they call a filter. My filter around this needed a bit of cleaning. Maybe yours does too if you have a kid who is floppy like Ellie. You gotta ask - how the heck are they going to do that? How will she be safe? What will they do if the horse runs out of control?

I think these are pretty sane questions. I know that I feel very protective of Ellie and the last thing I ever want to happen to her is any more injuries - she's had enough injuries since an early day one start in life.

But it was time, over due. This time I got Dave involved in the search too, especially after having a hard conversation with a local riding outfit where the woman asked me if Ellie could sit on her own. I said not for more than a few seconds. Then she asked me would Ellie need a rider to sit behind her, and my safety fears kicked in and I answered that, that would be nice. To which she replied, well we don't do that here. To which I replied - that's not a fair thing to have asked me then! I don't know what Ellie needs... and I explained my fears around safety but that she really needed this therapy for her well being and wouldn't they just assess her please! That's when I got Dave involved to look for other stables because I was tapped out emotionally - remember it's been a 4 year search.

That local stable decided to take her on, then changed their mind, and then called us back when another rider fell through. They were 5 minutes from where we live and on an opulent private school campus. They were not that friendly. But in the mean time between their acceptance, rejection, acceptance maneuvers, Dave found another riding stable called The Farm. They were really nice, welcoming in fact, versus leery and condescending. They are about 40 -60 minutes drive from where we live depending upon traffic but accommodated Ellie so that she could go on Saturdays. They were nice and their prices are very reasonable - in fact half the cost of all the other places we have called. They didn't ask if she could sit. They asked to meet her and assess her. They asked her height and weight and told us about Nic Nac the pony in desperate need of a rider. It was looking like the stars had finally aligned around this.

We went to meet them. Lauren, is the OT in charge with graduate degrees in OT and Therapeutic Riding and is wonderful. She is truly passionate about getting kids up on horses and kind and collaborative. Lauren is a teacher who knows how to push a kid such that they go beyond their limits but are not traumatized by the pushing. On her second lesson Ellie got on Nic Nac. I thought it would take weeks. On her third lesson Ellie rode Nic Nac twice around the farm not just the smaller riding ring. Ellie told me later that she liked Nic Nac but that riding him is hard. I agree. I think it will be easier as she gets stronger. She really liked giving Nic Nac a carrot. We are going once a week and had two weeks off for the 4th and a family birthday. Tomorrow will be Ellie's fourth lesson.

Did I mention, that for Ellie to do this, Lauren assembled a team of four other volunteers? That's how they do it - a team of people. Two people hold Ellie on Nic Nac's back. One other leads the horse. Another is there just in case and Lauren directs the whole thing and works with Ellie, teaching her how to hold on, encouraging her, making sure her body position is good. Lauren fitted out a special helmet for Ellie which you can see in the pictures where Ellie is in the purple shirt and the helmet is not sliding down - her third lesson.

Here are some pictures so you can see how it works. Picture Description from the top down:

1. The pictures with Ellie in her pink dress are from her second lesson and first time riding Nic Nac. She is all dressed up because she was coming straight from a birthday party. She started sitting side saddle until her hips loosed up and then she was able to sit astride. The blonde woman and the young girl are a mother daughter dynamic due who are volunteers and hold Ellie for the entire ride - quite an arm work out. It was their family member who outgrew Nic Nac and they are very committed to helping kids like Ellie ride. Also, you can see a belt at Ellie's waist. That has some loops at her back and is held onto at all times by one of the volunteers just in case Nic Nac decides to take off, they can get Ellie quickly off his back. Did I mention that Nic Nac is also an older horse? He is gentle so hopefully they will never ever have to use it. But it's a safety measure just the same and I am all for it.

2. That's Ellie in her third lesson with properly fitting helmet thanks to Lauren riding around the farm, wind in her hair. She was able to sit astride from the start.

3. Here you can see all the volunteers and how they work as a team - an amazing, warm hearted, volunteer, competent team! Thanks to all of them!!!

4. Ellie sitting astride Nic Nac listening to Lauren.

5. Ellie checking out the handle after Lauren explained how to hold on. And looking at the saddle blankets that were picked for their purple color - which is Ellie's favorite (pink is so age 6..). Also, the wooden platform you see is raised and it's a ramp so you roll Ellie up on it in her chair and that is how she gets on Nic Nac who stands beside it. Nic Nac is a great pony. He can be ornery with adults but the minute Ellie gets on him he knows and is his most gentle self. It's like it's his calling to help her with this therapy.

So if you are as cautious as me about this, I hope these pictures and post help give you an idea of how it works. Ellie's seven and has needed this therapy for a long time. But I am glad it's happening now after having found Nic Nac, Lauren and The Farm volunteers. I am glad we found the right place with the right philosophy because that makes all the difference.

Migraines and Ceiling Tracks

2010-05-16T11:17:00.005-04:00

Ellie was up all night with a migraine that was manifesting as massive clonus in both of her feet and a bad headache. Imagine having a foot cramp so bad that your foot vibrated like electricity was running through it and there was jack you could do to stop it. I spent the night holding my 7 year old on my lap and reaching at the awkward angle required to touch the tone inhibiting points in her feet that Ellie's PT showed me. It worked but I had to keep her foot in the hold for minutes to keep the clonus at bay. Every time I would release the clonus would come back. Clonus does feel like electricity because it is. It's a result of the neurons firing but ending up in a loop that does not go back to the brain but gets stuck in the spinal column so there is not shut off valve for the muscles to stop contracting. It's funny, you would think that brain injury would shut things off, and maybe it does in some cases, but in Ellie's, and anyone with high tone, it turns things on and keeps them on.

AND I was out of Motrin. Tylenol seems to do little for Ellie's migraines, though I gave her some anyway. That is how I spent the wee hours between 2 and 5 am last night, finally going in to wake Dave up for shift change. Ellie was up again at 7:45am. She wanted to sleep on me. Sometimes it's the only thing that calms her and I sit up and hold her on my lap as she buries her face in my shoulder. I love holding her and am glad it is soothing to her. The clonus is much less but my lower back suffers as it gets compressed under her weight which after hours of this has got to be 40 pounds.

When I was 21 I backpacked around Europe and my pack weighed 40 pounds and Ellie feels about the same. That's pretty heavy when it's just solid weight on you, like a 40 pound back pack resting on your stomach and thighs for hours...

Ellie has been up and tossing and turning and complaining all morning. I gave her some coconut milk and tried to get her to eat but it's a no go. Dave went out and got some store brand motrin (because the name brand has been recalled because of dosing issues - great - another thing to worry about) and we are waiting for that to kick in. I really wish I knew the trigger. It's hard to pin point. We did take her out for ice cream and she had some vanilla yogurt and she had chicken soup last night for the first time... We are going to give her Zofran now to stop the nausea so she can eat. Did I mention how much I hate these migraines?

Dave and I also finally came to some conclusions about the accessibility of our house and what to do. We were considering a stair lift so that Ellie could keep her upstairs bedroom but decided in the end to build out our back covered patio. It'll be as big as her bedroom now but a better layout actually. With her room there, we can put in a ceiling track and Ellie will have access to the whole first floor which will also have the accessible shower. I will not miss carrying her up and down the stairs. The room will have big windows and face out toward our rock garden and back hill, which is wild now but will have to be tamed. And if there is ever an emergency it will be much safer, faster, and easier to get her out of the house. It's nice to finally decide. The weight issue of this whole situation is number 3 behind death and lack of sleep. I have worried about it so much. But with things like ceiling tracks, it may be manageable. Ceiling tracks and back boot camp stretching and weight lifting. Taking care of yourself is important anyway for anyone, but seems to make all the difference in my situation thought not fool proof as the pain I am feeling now is evidence.

It's so hard to know what to do. Our house is this living constantly morphing thing.

I don't think we will make it to T-ball today. Oh, and Google's spell check, should know how to spell clonus!

MVP! and March of Dimes Follow Up

2010-05-14T11:16:00.003-04:00

On Mother's Day Ellie played T-Ball and she had such a great time, such a good attitude that she got the Most Valuable Player distinction, complete with signed ball from the coach! What a wonderful gift on Mother's Day. The pic is of Ellie up to bat. Last year her head control was such that she couldn't wear this helmet and keep her head up at the same time. Progress.

We didn't walk in the March of Dimes walk after all. We were waiting and hoping the thunder clouds would abate, but they didn't, and lightening and wheelchairs are not a good match. Liz and Marla represented Team Warrior Princess and walked in the pouring rain and thunder. Thanks to Liz and Marla and everyone who donated to the March of Dimes. We will do it again next year and hopefully the weather will be better so we can participate in the actual walk!

Walking for the March of Dimes - Tomorrow!

2010-05-07T22:44:00.003-04:00

Hi everyone! I wanted to thank everyone who donated to the March of Dimes "Team Warrior Princess". We have raised $1,110 dollars total - exceeding my goal of $1,000.

We will be walking tomorrow and I will be sure to post pictures.

Thanks again to all who gave their support to this worthy cause of helping prevent premature births and supporting parents who have babies in the NICU.

The picture is of Ellie last year at the walk (she went with Liz who set up the site this year and is team co-captain). The crowds bothered Ellie so they took a breather by the river. Ellie had a great time just the same. It's amazing how much she has changed in just one year.

Wish us luck for tomorrow and cross your fingers to keep the thunder storms at bay. Lightening and wheelchairs are not a good match!

Ellie's Staycation

2010-04-22T09:30:00.008-04:00

Ellie is home this week for April Vacation. Our friend Kristin coined "Stay-cation" . I love it as it perfectly describes Ellie's ideal vacation: staying home. She has been enjoying the extra time with Mama and getting to see some friends she hasn't seen in awhile. On Tuesday she signed I love you to me giving me a long look to make sure I got the message and then a hug and didn't ask for a toy. That was all. A simple but meaningful I love you. Of course that made my day/week/life. You know. She is so cute and when she does stuff like that it's heart-rendering! Suffice to say, I think she is enjoying being home.

She has also gone to having a very bad cough to now a bad cold. Not unlike many adults I know who wait to get sick on the weekends or vacation. It's truly a stay-cation. Here are some pictures of my indomitable sweetie, all taken with the iPhone by Ellie with just a little of Mama's help.

True Spring

2010-04-14T17:01:00.009-04:00

Too much in my brain right now to even begin to blog. So just some pics of Ellie who as a seven year old has the most thoughtful expression sometimes like in the first picture. She sort of sets her mouth just so and looks very serious. I wonder what she is thinking while at the same time feel the sanctity of her inner processing, so I don't wonder too hard and am ever so thankful that she is filled with so many thoughts. A pic of her and dada and the iPhone. Lastly a picture of the painting that will be done before I stumble across another birthday.

Ellie has been well. We are experiencing true Spring for the first time since we moved here. I am grateful for the transition.

Thank you VERY MUCH to Penny Richards for your testimonial about the strength of stomach acid to dissolve baby teeth, sharp bits first, before they ever reach the small intestine. I am sleeping much better now. Thank you so much!

March of Dimes, Casting, G-Tube, Migraines

2010-03-23T22:14:00.008-04:00

This year we are finally walking for the March of Dimes on May 8. I wanted our name to be Team Ellie but that was taken. So we are team "Warrior Princess". It's such a good cause. I am glad to be participating and feeling like we have the space in our life and the health to do so. If you are interested in joining us for the walk you can sign up on our site and we will see you there!

Serial Casting Update: Not so good
Ellie got through her first cast after one week of no sleep and with a cut/dent on her left ankle. This cut turned into a crater when the donut that they put to protect it in the second casts slipped. She made it through 4 days. The wound is still not healed. The gains she made - because it is clear that serial casting does work - are slipping away on that side. Her feet are becoming clubbed. It's upsetting. Ellie knows how to walk. She deserves feet that will hold her up. It's frustrating. We are reconsidering trying Botox one side at a time to see if the systemic reaction we got last time was a fluke. That may sound crazy, but check out these alternatives:

Phenol Block. Phenol in 1% of people it causes life long pins and needles at the block site....no thanks.

Baclofen: this relaxes tone systemically. Good bye head and trunk control.

Bacolfen pump inserted into the spine - forever. This delivers Baclofen to the nerves in the legs only but is 3+ inches in diameter and is a permanent implant....God that bums me out. It can still cause systemic side effects like fatigue....

Rhizotomies - where they cut the nerves that are effecting the muscles most. This works great for kids who are already walking because they can isolate the nerves most effected and the kid's brain is already wired up to walk, the muscles are there, etc. In kids that are not yet walking there is a good chance they never will with this treatment because what nerves do you cut? Which ones are the ones Ellie's body will self select to support her walking? Since it is in no way clear to me that she will not walk, this is a no go.

Her spine is ever so slightly curved too. I told the doctor that we had been doing less tummy time. I think he sensed my guilt. He was quick to point out that Ellie's tone on one side is much higher (her right side) and her left is weaker. He said it was the tone (the nerve signals flexing the muscles constantly) that is causing the spinal curve. He also said it is very hard to work the muscles on only one side of the body but that, that would help.

Her hip is the same amount effaced which is good because it didn't get any worse.

Other things we can try that there is no research to support they help or hurt:

Conductive Education

and

Feldenkrais

and

Hippotherapy

and

Start up again with TST

and

Hyperbaric O2 treatments

If we win the lotto I can quit my job to not only afford all of this but to get her there too...

Other things on the docket:

Dentist Visit: her first baby tooth is gone and I am not sure where...it's sad. There was nothing for the tooth fairy. I worry about how many teeth she can swallow...will those little baby teeth hurt her intestines? Then there is the obvious fear of her chocking on them.

G-tube revision: The good news is that she has gained back the weight she lost since September (can you imaging it taking that long to gain weight!) but now that she has, her g-tube is rubbing again and causing her pain.

Migraines: still a problem each month or sometimes every other month.

Adaptive Equipment needed: Potty seat, roll in shower for said Potty seat, hospital bed, stair lift, wheel chair van. Lovely things on our horizon that take months to get if they are covered under insurance and only half of them are.

It's a sea of medical issues and concerns in the murky land of brain injury recovery.

Let me tell you some good things too. She is eating up a storm and making progress on chewing soft things like banana. She is sipping slightly thickened liquids from a nosey cup! AND she is way, way into feeding herself! This is HUGE great news.

She is having success in Potty Training, we don't have a seat at home she can use which sucks and is the only thing holding her progress back.

School is going very well. She is being assessed for voice output devices FINALLY. I could sing! I can't wait till she shares with me any thought in her head that I don't have to muddy with my own interpretation! Right now I understand her much of the time, but sometimes she is communicating and I have to ask her questions to try to understand. Sometimes I ask her a question and in doing so influence her communication - that is what I mean by muddying.

Her fine motor is improving fast. And she is growing, growing, growing. She thinks it's funny when I tell her "Shhhhhhh let me listen to you grow!" And then I lean close and listen. She is way into They Might Be Giants which is the most age appropriate new thing she is into and what balm and relief from Signing Time and Baby Einstein! (No offense - but 7 years of those daily is a Looooooonnnnnnnngggggg time!).

She is maturing in her wants and needs. Her expressive language has taken a real leap forward increasing the need to give her better access to language. This is my favorite current problem to have. Also, as reported, the iPhone is still in favor and she is getting good at flipping between screens and tapping to make a video play. In the second picture up above, that is me and Ellie watching TMBG videos on the iPhone while taking advantage of a rare and lovely 65 degree day in the park.

Ellie is still such a sweetie who loves to laugh and laugh with you and include you in the fun. She is also, hands down, the cutest 7 year old I know. (not that I am biased). ;-)

I hope and think, when she is not in pain, she's a happy kid. Not as happy as she was last summer, because of all the pain on so many fronts right now, but hopefully we can stay on top of it and figure out how to move through this part of the story and get to a place where she is not in so much constant physical pain.

Why the word Disabled does not refer to Ellie

2010-03-02T15:10:00.001-05:00

Different NOT Less

2010-02-27T11:54:00.006-05:00

I have been thinking about this lately. It's been less in my face because Ellie is in a GREAT school and we are surrounded by people who are in the special needs community. We are lucky for all of this. But I think sometimes about how we will immerse ourselves in life even more. We are still somewhat isolated outside of school. It's much better since school, but still. One of the keys to our freedom (freedom being defined by me as access to community and all it has to offer) is Assistive Technology. We received a grant from the Gasperini Fund for some Assistive Technology but have not spent it yet because we are not sure what to buy.

It's hard because Ellie has motor disability. Her fine motor, is ok, very ok in that she can use her hands at all. She can operate her toys and her Weemote. She is having some success using my iPhone to swipe through pictures. The "tap" the screen part is more difficult, but I have not set my own phone to the accessibility settings yet. I am overwhelmed by all of this sometimes and frustrated. There is a huge smart board at Ellie's school - but she only gets to use it an hour per week. What I love about the iPhone is that we can instantly take pictures or videos of people and things that are meaningful to Ellie and use them to communicate and play.

Yesterday, Claire, left a comment on this post telling me about this app for the iPhone/iPod.

Voice4u.

Thanks to Yumi for inventing it. It is always disgusting to me and outright wrong how much the companies who make "assistive tech" charge. I have heard the argument that they have to charge more because there is such low demand. I think that argument is a lie. To have to pay $65 for one switch that probably costs the company $1.50 to make is price gauging at its worst. I appreciate the high tech environment and the freeware movement especially.

The problem in our life is NOT that Ellie has a disability, it's the lack of access. It truly is. A very smart Professor at the school I am working at now has termed this the "Social Model" of Disability.

Thank you Claire!! You have reminded me how much I love my blog readers and other bloggers and the access to the world of parents in my same situation struggling to figure out the same problems.

I am going to upload it and give it a try. Why, oh why does the iPod NOT have a cameral and video? I will hate it if the answer is pure marketing that has to do with ATT and not making a profit if people buy such an iPod instead of the iPhone and it's network.

Still the need to have to "tap" is a problem for Ellie. But for $29.99 I am ok with giving it a try and being Ellie's "remote" to help her do it. I am looking forward to the day when Ellie, using voice output or some other means can more easily tell me what's on her mind. She has been expressing herself so much more in the last 6 months. It's incredible and one of those corners she turns when we least expect it. Happy days.

Thanks to this blogger, Tammy, mom of Parker, for her blog as well. I will be adding it to my list.

Let me know if you try Voice4u and have any success.

Illigitemus non carborundum est

2010-02-22T22:58:00.006-05:00

Ellie is in the midst of another migraine. The bad kind - where you puke and then are just in agony or are in agony first...etc. She woke up at 4:30am last night rigid in pain. Her feet had such violent clonis (tremors) that I couldn't get it to stop. The Tylenol did nothing but the Motrin did. For the first time I gave her Zofran after she couldn't keep her rice milk down. I was in Mama Warrior mode. Ellie has just gained back the 6 pounds she lost and I was like, "I am NOT going down like that." And whipped out the Zofran which I am now a fan of (it's an anit-nausea med). Twenty minutes after receiving it she asked for applesauce. Though she ate very little, she kept it down and was able to eat after a couple of hours and keep it down. No more abdominal migraine weight loss at least.

Her temp has been struggling not to climb so I am on Tylenol/Motrin watch all night. Her timing is perfect as Dave is away on business. Sigh.

I wish I knew what the trigger was. There are triggers for migraines right? Maybe I am just looking for some mythical point of control.

Last week was school vacation and Ellie had a blast and slept well. It was low key but great to get to have so much time with her during the day in our sunny home. Her latest obsession is the iPhone. I taught her to sign i phone and it's the first thing she wants in the morning and last thing at night. We make videos and take pictures of her toys. We take videos of people she loves doing fun things they do with her to make her laugh. So what's not to like? It's a good bargaining chip too to get her to do other things, like her math homework!

She is also into They Might Be Giants. That's right TMBG for all of you who were fans of them in the 80's they now do kids music. Ellie's favorite and only TMBG cd is "Here come the ABC's". She is also obsessed with this which is a very welcome change to Signing Time and Baby Einstein - not that those are totally out - but very much in the shade. Yay.

Warning, parental side effects include: incessant humming of Flying V's and "F is for fun!" and wanting to "Go, go, go for G!". The tunes are very catchy. If you don't believe me, check it out here.

It's really nice to see her enjoying two new things that are less baby-like. Her interests are beyond what her motor control will let her do so she still plays with toys she has had for 5 years in some cases. They comfort her and the way she plays with them changes...but still. I am hoping that the iPad will one day include a camera. It's the perfect size for Ellie. At least it looks like it is. The iPhone is great but a little on the small side for viewing. I am wondering if she has gotten eye strain from it and that is what caused this latest migraine episode.

Also, to those of you out there saying they iPad is for grandmas, I have a few comments.

1. Get your head out of your butt and realize that saying that is derogatory to women.

2. It's a truly amazing piece of equipment. For proof go here (warning - you may be convinced and you may laugh because this guy is hilarious).

3. Apple are one of the only big computer companies working actively (have a designated team) on assistive technology for the disabled. I support that and so should you! Assistive technology is the access point to the world for Ellie and other's with similar issues.

Celebrating Small Wins!

2010-01-20T17:01:00.002-05:00

This Saturday we were planning to take Ellie out to lunch after ballet class. We would be out for several hours. Dave asked me as we were packing Ellie's nap sack, "Do you think we need to bring an extension?"

I had never been asked that before! Being asked that really made my day.

"Yes" I replied, "just in case."

;-)

Nothing Left to Bolus

2010-01-10T16:52:00.004-05:00

In my last post, I worried that I was reporting too soon, commenting on an anomaly or a shooting star. I am happy to report that is not the case! Ellie is eating! It's official and I hope it stays that way. AND she hasn't had any migraines in 2 weeks. This is a big improvement after her getting them every couple of days. It makes me think we are right about those headaches being part of the withdrawal from Protonix and Depakote.

But back to eating.

She eats. She eats a lot and with enthusiasm. She has been eating so much I don't have anything left to bolus. Woot! And she has been eating more. Whenever Dave and I eat around her - which may not always sync up with her meal time, she will eat too. She eats pureed versions of what we are eating or some applesauce or something like that - kid food. The fact that she eats so much more and usually whenever it is offered makes me think she must have been terribly hungry over the past few years. Sigh. :(

Still, she is eating now and it's a wonderful thing to get to feed her and see her eating. It's very cute and there is something that is soul deep satisfying for me as her mother being able to feed her by mouth and having her eat. Also, I noticed that she has less reflux - no kidding, right?!

Video to follow.

Happy New Year!

2009-12-31T19:46:00.008-05:00

Ellie just ate 60 cc's of Earth's Best Baby Carrots

BY MOUTH!!!!!!

OK! This is the BEST gift EVER!!! I had to tell you all because you're the only ones who will really understand how significant that is. Thanks especially to Erin and Lauren at school who made eating fun, hip and cool again for Ellie by patiently and persistently getting her beyond a very serious oral aversion of the last 2 years. I am also thankful to the PCA who had to cancel tonight such that Dave and I ate our New Year's Eve meal with Ellie while she was having a foot soak, watching Signing Time and getting her carrots. She's a social eater and wanted to eat with Dada by mouth and take bites when he did at first, then she just started opening her mouth and waiting for me to feed her like she had been eating all along and had never taken a three year hiatus!!!

Brought tears to my eyes to see her eating and swallowing and intermittently using the spoon herself. Not one cough or gag and not much on her clothes. Just beautiful chewing, lip pursing and swallowing! Where did this precise and head controlled princess of eaters come from? Ahhhh the things that make life grand.

Happy New Year Everyone! I really hope that this is the shape of things to come in 2010!!!

Abdominal Migraines and Santa

2009-12-18T00:28:00.006-05:00

It might be that the Periactin is working. Maybe. Ellie has had a slightly elevated temp on and off for the last three days. It has ranged from 99.4 to 100.6. She has not vomited. She was given motrin and she is not totally herself in that she has been tired and has dark circles under her eyes and is very pale. I need to get a script for an oximeter because I want to know better how much pain she is in. My rational is that if her heart rate is elevated then she probably has some pain. Also, she is pale. One time when she had a seizure she was pale but flushed at the same time and the O2 saturation in her blood as taken by the EMTs was 78. So, I kinda want to know how she is doing when this is going on. It's hard though. Instead of a week between not it's a couple of days. If this becomes everyday that is an untenable situation.

Picture description: Ellie at her school's jubilee. She signed "I love you" to Santa.

Update

2009-12-11T11:41:00.004-05:00

Ellie's migraine lasted for about 8-10 hours. She didn't vomit this time and I kept giving her all her food so that on top of a sore head, she was not also hungry or dehydrated. It's hard to say because she, sadly, has a very high pain tolerance. I gave her Tylenol and Motrin and she went to sleep that evening and slept through (that was Monday). Tuesday we were getting buckets of snow so she stayed home, which was good so I could watch her. Though she looked tired she played all day and was in good spirits. She had a low grade temp on Tuesday morning as well which goes along with what we are learning about abdominal migraines. I think she was in a little pain still on Tuesday. However, it is clear to me now that migraines mess with, you guessed it, her sleep cycles. She fell asleep on Tuesday around 9pm. She woke up a couple of times in the night and was still tired the next day. On Wednesday she was up until 9pm and then again at midnight and was not easily persuaded back to sleep and tossed and turned. At 4am on Thursday she was UP. And I mean wide awake and wanting to play and sign and any suggestion of going back to sleep was met with a howl. She also told me she was hungry and the aowie in her head was gone.

I brought her down stairs and gave her breakfast and we played until it was time to got to school. I was expecting a call around noon saying she was crashing and to come and get her. No such call. I picked her up at 3pm and her teachers reported she was in good form, totally engaged all day and not wanting to nap at all. She finally got sleepy around 8:30pm Thursday night and slept through.

Migraines, yet another thing to learn about.

The Why question is still on the table. Root causes the doctors are saying are anything from cyclical vomiting, abdominal migraines, to deep brain seizures.

What they are not considering, at least verbally to us, is the withdrawal issue. Withdrawal from Protonix and Depakote, which is still not off the table in my mind. They in fact are saying if Ellie's symptoms are bad to put her back on the Depakote, which for many reasons discussed in prior posts I don't want to do.

If this is hereditary migraines, thanks to my side, then we have to treat them with the Periactin and pain killers. If this is withdrawal, hopefully they will end as soon as her liver has a chance to process all the toxins.

Neurology is difficult because there is so much they don't know about the brain. I am glad that this time Ellie's symptoms were less severe, no vomiting or nausea that I could tell, and a shorter time of head pain (either that or she is getting used to it - which really upsets me).

The question is, what is acceptable in terms of her symptoms? And this time instead of being a week in between symptoms, there was only a few days. What if she starts having these episodes every few days? What if, what if, what if? I have more what ifs and whys than I have answers. I wonder if it the answer is staring me in the face and I just can't see it. I want to see it, I want to do what is right for Ellie. I don't want her to be in pain. What am I missing?

**picture description: Ellie laughing in her tent this summer in Carmel-by-the-Sea

Migraines Suck.

2009-12-08T19:18:00.003-05:00

After 2 great days at school, Ellie is down for the count again. She was having her dinner and very suddenly went into pain. She was rubbing the back of her head and in fact the whole right side of her head and started to cry. Then she wanted just to bury her face in Marla's shoulder (Marla is a PCA extrodinaire). Then Ellie spiked a fever of 101.1. After a dose of Tylenol the fever went down to 99.7 but she was still in pain. After 2 hours I gave her some Motrin as well. I gave her some homeopathic stuff to no avail inbetween. Right now she is sitting in a darkened room alternating between crying out in pain and trying to rest. She hasn't vomited up her dinner.

This is hard, for the record, very hard. Hard to see her in pain. Hard because Tylenol and Motrin seem to have no effect. Hard because she was doing so very well and having such a great day. Hard because it looks like she will miss out on a very cool field trip to a 4D version of the Polar Express. Hard because when she screams it drives out all other thoughts from my brain.

Hard because she has experienced so much physical pain in her life already. Who do we call "uncle" to? Who? I am calling, "uncle, uncle, uncle!"

Migraines Suck.

Home Again

2009-12-03T08:44:00.006-05:00

Ellie came home last night. We did get the MRI. They tried it with her awake. There is the quickie MRI like I mentioned. Ellie didn't like it one bit and ended up getting upset even with Mama in there with her. They had to put a cage like contraption over her face. I don't blame her for hating it. But they managed to get a few images of her ventricles that will establish a baseline for this new imaging going forward so we can avoid CT scans. The good news is that there was no change in her ventricles. Dr. Gumnerova is out of town so the neurosurgery team and Ellie's amazing pediatrician did not want to tap the shunt. Ellie's shunt system is so complicated that it's like balancing a dime. No one wants to mess with it.

The other thing was that instead of being lethargic, in pain, sleepy, and nauseous for 2 - 3 days Ellie felt better after 12 hours. I am not sure this was the fact that they gave her Zofran or IV hydration and electrolytes or that the Periactin was kicking in. Ellie's pediatrician in the Thanksgiving week had time to reconsider the Diamox trial and that is off the table - thankfully.

After all that we came home last night late with a script for Zofran (anti-nausea) to give Ellie at the onset of any symptoms and a whole list of follow up appointments to make: New neurologist who is a clinician versus a researcher and who runs a headache clinic - yay for engaged neurologists as it has been a long time since we have had one, GI doc check in on the weight loss, GI surgeon rescheduled appointment to see if Ellie's G-tube site needs to be closed and a new one put in, checkin with Dr. Gumnerova, follow up with pedi. Lots of calls to make and scheduling. Did I mention I could really use an administrative assistant?

It's a lot to manage.

Her pediatrician also convinced me to give Ellie the non-live version of the H1N1 vaccination. I thought I would come clean with that. We had been holding off with NO intention of giving it to her. He made a good case for her getting it though. And she has lost so much weight and her reserves are so low, and Dr. C, who is NOT inclined towards sensationalism in any direction said that 400 children have died this year of it already. He thought the consequences for Ellie would be "devastating". Dave and I discussed it and chose what we assessed to be the lesser of two evils. The child in me is complaining, "I don't like the Two Evils game!" and I have to agree. I know for a fact that I would like even less to lose my little one, my sweet girl. This is in no way advice or recommendation to anyone reading this regarding H1N1 vaccinations. We have been giving her vaccinations slowly over 7 years. She still has not had pertussis. We are very cautious about them and have given her more than we would have, had she not been in a train wreck at birth and so compromised.

The advice I would give ALL parents is to think for yourself. The doctors are "practicing" medicine. They are troubleshooting with a flashlight fueled by the power of their huge education, experience and knowledge. You as a parent are troubleshooting with a flashlight fueled by your HUGE daily observational data of your child combined with intuition and love (doctors, like Dr. Cloherty, add love to their flashlight too).

The fact of the matter is, that the best treatments and courses of action can only be found through a collaboration of these two lights.

Ellie went to school today after receiving her full breakfast without one burp. She looks pale and has dark circles under her eyes. She is very thin. I sent her in with all kinds of bulked up food with gracious amounts of organic real maple syrup as well as green food supplements. Dr. Cloherty, who is the best pediatrician anyone could ever have, said, "Let her go to school and take off the kid gloves with feeding her. She needs to live her life." He's right. If she has to be so restricted in her activities - it's more data and more cause for tests and exploration. But until then we need to get back to our normal.

***Image description: Ellie at her 7th birthday party opening gifts with Mama. This is a Tinker Bell toy that says a great many phrases and lights up as a lantern. Ellie's favorite is when Tinker Bell says, "Hi little Tinker!" Very perky indeed.

Day 2

2009-12-01T11:48:00.005-05:00

Dave stayed with Ellie last night after she was admitted at 11pm. We are in a single private room under "precautions" because of Ellie's fever which seems to have subsided for the moment. It's definitely nice to have our own space and it's south facing. We expected to have the MRI this morning, but because of the fact that Children's has limited number of machines (still trying to assess the exact number) and limited hours of operation....Ellie is in a long line of pre-op brain tumor patients. No argument there, I agree with that prioritization. But it means that we are here until tomorrow. I spoke with Ellie's wonderful pediatrician, Dr. Cloherty, just now. He thinks it's her shunt malfunctioning and discussed all the options with me. There are the considerations at hand (this kind of thinking is very like the logic "if/then" trees I did in my undergrad philosophy courses):

IF the MRI shows enlarged ventricles, THEN shunt revision brain surgery. The good news is the Dr. Gumnerova, superwoman and neurosurgeon all in one, is in town. That said, I hate brain surgery. We have lived through so many of them with our little miss and they terrify me, even with superwoman at the helm.

IF the MRI shows no change (it could still be the shunt, because someone with Ellie's level of brain trauma and brain atrophy, it takes a lot of pressure to expand the ventricles) THEN Dr. Cloherty will ask Dr. Gumnerova to tap the shunt. In doing that she would flush the shunt which can get it working optimally and/or will show it is definitely not working...

IF Dr. Gumnerova refuses to do that, we THEN continue down the Migraine route with the Periactin

Try Periactin and a small dose of Depakote - the logic there being to try to go back to the medication balance Ellie had this summer before these episodes began. IF that works (the two meds together) we THEN go for a month or two and IF she is symptom free we THEN pull one of the meds to figure out which one it was that was working...

He again, speaking for all the GI doctors in the world (not really, but it feels that way) suggested we reconsider doing a fundoplication, which he said could get her off all the reflux meds and ensure that she keep down her food. I have written extensively about the fundo...but seeing her lose all this weight and the effect all these meds have on her, I am once again looking for the lesser of two evils. That might be another new name for my blog "Ryn Tales: Looking for the lesser of two evils".

Here we are, waiting and watching and thinking in IF/THEN scenarios. Through it all my dear Ellie continues to shine brightly with a light from within that sustains us all.

***Image description: Ellie sitting on the fence of the Safari Exhibit at the Dublin Zoo in early August, held up by Dave.

In hospital...again

2009-11-30T23:34:00.005-05:00

Ellie is in hospital again. Same symptoms, the sudden ashen face, discomfort turning into fatigue and vomit. Instead of taking her home from school to sleep, I took her to the ER. She was then admitted to the neuro wing. Turns out there is this new MRI machine that can take a quick (5 minutes) and more accurate image of the ventricles...saving Ellie a whole lot of radiation. Apparently they have been using this for quite some time, but it is the first time we have heard about it. I am thankful to have found out. The reason we haven't heard about it before, though we have numerous ER visits that include CT scans, is because they only have a very small number of machines and limited hours of operation... Are you kidding me? So much there for another post.

Anyway, she is in for the night with Dada and will get the new MRI in the morning under slight sedation without intubation - which is a big improvement and sans radiation. It's still not clear if this is an abdominal migraine, regular migraine, brain deep seizure that doesn't show up physically nor in any EEG, acid build up or a malfunctioning shunt. 6 hours into our ER visit, Ellie spiked a fever.

There it is. I am home tonight alone in a quiet house, running Ellie's vomit covered clothes through the wash and cleaning up from the morning refuse. Putting her morning cereal bowl into the dishwasher feels a bit surreal. It's weird to be here at home, alone without the people who matter most. It's survival. Dave and I trade off sleep all the time, but it's weird, in a weird just not right kinda way.

Other than that, I am too tired/meh/raw/numb/notsurewhat to proffer more than the facts.

It's a Mystery

2009-11-27T21:55:00.005-05:00

Sometimes I think my blog should be called something like "All the Gory Details" or "A life to make you grateful for yours" or something like that. It's the outside in thing. I have stopped hoping for people outside my world to understand. Those that will, will, and those that won't never will no matter what I write or what they see in pictures. How's that for a cynical view of prejudice? It's true of my students as well. Some are there in the Master's program to learn, some are there just to get a degree. I have trouble with the latter since I love my profession and take a personal approach to teaching such that I still care if they get it or not. That hasn't been driven out of me yet...this is turning into a cynical post and I digress.

What this post is really about -back to the gory details part- is the last few months and the conclusions we have come to. Ellie has been having a very hard time on a few fronts since August. 2009 has been the year to get off meds. Lots of calculated risks and believing in my understanding of my Ellie versus what the medical community has to say. Since January she is off: Cisipride for Reflux, Depakote for Seizures, Protonix for Reflux, and mostly off her Zantac. That's a lot of change.

Since August she has not been sleeping well as you may have heard. We thought it was her brain adjusting off the Depakote- and so it may have been initially. Then when we had the mishap with pharmacy we pulled the protonix - which is a proton pump inhibitor. Then we realized that she was growing out of her g-tube and the bad pool water at her school and possibly some sand from all the beach going in the summer just made it worse. We tried two different sizes of G-tube and nothing worked. Then she started to have these episodes - one in August, two in September, two in October and then a week later in November where she would vomit and then not want to eat and not hold much down and be very sensitive to light and sound and irritable and exhausted. She has missed more school because of this than not. The whole episode would last for 4 days. The last day and a half where she would be doing better but just exhausted from the first two and a half days.

She missed a lot of school. I missed a lot of work. The world keeps moving forward at the most unforgiving pace.

She also turned 7. I need to do her annual montage but that will have to wait until I catch up a little more and until she gets on track.

The day after her birthday on November 10, she vomited, was exhausted, would want to play with her musical toy but the minute she held it would push it away and bury her face in my chest. Holding her didn't help. She didn't want to eat - but unlike a stomach virus - was able to hold down small volumes of rich food- avocado and coconut kefir to be exact. She would vomit up anything else. So the tummy bug / back to school virus was not holding water any more.

Then on Tuesday night she was up all night - screaming. Why we didn't bring her to the hospital at 2am when the worst of it was going on I have no idea. We did check her eyes and they dilated fine and evenly. She wasn't vomiting. She was just in pain. At 8am I brought her to her pediatrician. We realized that this was not a situation we could handle at home anymore. It wasn't some sort of repeated virus and it wasn't her g-tube - which was still in rag order because her stoma for the first time in six years was not healing as it should. But this was something else.

The pediatrician looked in her ears, eyes, throat (making her vomit) and looked concerned when I reported Ellie's weight loss which was roughly 5 pounds since August from so many weeks of these episodes. She had, had a little roll around the waist and some meat on her arms but now she was very thin.

Upon discerning that there was no ear, throat infection, no swollen glands no rashes and all the usual suspects he sent us across the street to Children's ER. In the ER they put in an IV (God bless all Nurses who are good at IV's on an ex-preemie's veins) did a shunt series and a head CT. They are very efficient there and got Ellie in a small dark room right away which was good considering she was still in a lot of pain. I chose not to giver her Tylenol (which I had been giving her when she was having these episodes) because I didn't want to mask any symptoms - because at this point we thought it was her shunt.

They gave her Zofran for nausea and this allowed her to sleep. We saw the neurology team, the neuro surgery team, the pediatric attending. The scans came back showing nothing. Theories were thrown around. The attending pediatrician said Migraines. I called Dave who was at work and asked him to search migraines. He did and found many, many reports of people who were long time users of proton pump inhibitors (prilosec and protonix) developing migraines either after quitting the drug or if they were over 3 hours late in taking their dose.

The problem was that because of Ellie's history and complex shunt system, no one wanted to believe the migraine diagnosis. The young Neurology resident was annoyed at the Neuro Surgery team for writing Ellie off so quickly, he was sure it was intercranial pressure.

They admitted her Wednesday night after 10 hours in the ER. I said I did not want to take her home with all of this going on. It was beyond our ability to help her because we were trying all the things we usually did and she was in pain and not eating and the weight loss had to stop.

They were reluctant to feed her if she was facing a brain surgery, so they kept her on IV fluids with some sugars in them and electrolytes. Dave and I took turns staying with her. She was there to be observed, hydrated, and tested. All her blood tests came back normal. White blood cell count was normal and not elevated which ruled out infection. They did a 24 hour EEG that came back normal - which was excellent because it ruled subliminal seizures. The nutritionist took away my print out of Ellie's diet with all the proportions and exactly what Ellie is given each day and gave it a full analysis. The very cool news is that Ellie, when she isn't sick, is getting 1,700 calories a day, enough fat, vitamins, and protein. Go figure and not any synthetic formula doing any of that. I have to say nutrition has come a long way since we first went to them at Children's in 2003. Then they thought we were nuts to go on whole foods. They had us try every formula in the book and when those formulas made Ellie more sick they said we were administering them incorrectly. It was Linda Scotson who gave me the guts and the know how to transition Ellie on to whole foods.

But this time the nutritionist looked at Ellie's diet and didn't bat an eye. She knew what coconut kefir was, shared the same concerns about Hemp and did the research on that for me. She was awesome. She respected our values. AND she gave me a great resource I have on order about homemade blended formula. She had a few suggestions and then she put in writing her results such that I had medical proof I could give to Ellie's doctors to show them that I wasn't starving her of protein and nutrition because she wasn't on pediasure or meat. By the way turns out that Hemp milk is very low allergen and one of the most bioavailable proteins out there. I put Ellie on it to replace some of her rice milk and she is doing beautifully. It was easily the best experience I have ever had with a nutritionist. And it was very validating. Dave when I showed him her report said, "Oh thank god! That's a relief!" I think now he might actually believe I knew what I was doing...

Our hospital stint did garner these two good findings - the normal EEG and the blessing on Ellie's whole foods, food combined diet. But it still did not answer what the heck was causing Ellie so much pain.

It came down to two camps. The migraine camp and the sub-optimally working shunt camp. The test they wanted to do to prove it was the shunt periodically malfunctioning was to put Ellie on Diamox which would reduce her body's production of Cerebral Spinal Fluid, such that if she was having intercranial pressure her symptoms would stop. The doctors who wanted to do this said there were hardly any side effects to the Diamox, but if you Google it you will see that is wrong. AND what if it isn't her shunt? What if messing with the amount of precious CSF bathing and protecting her brain could make the shunt clog? It was so difficult to get Ellie's shunt system working to begin with (4 surgeries) that I was very leery of this. Dr. Lillianna Gumnerova, who is Ellie's neurosurgeon and an attending at Children's, came down and examined Ellie and looked at all her scans and was very clear that if it was Ellie's shunt her symptoms in between episodes would not totally abate. Malfunctioning shunts just get worse. Since this is where she lives, we were inclined to believe her. She was also the only doctor out of all the others who was able to get Ellie's CSF to drain properly to begin with so she looms large in our world.

The other path was to try a drug called Periactin for migraines. A friend and a mother of one of Ellie's school friends told me about it. Turns out that antihistomines are great for migraines and this one especially. Also, it's a really old drug - tried and tested and the side effects are minimal. Ellie's pediatrician was coming by a few times a day to check on Ellie, which is how concerned he was and he's awesome! He is the only doctor that crossed all the teams. And they listen to him there. He wanted to go the Diamox route and knowing him and trusting him as I do and respecting him too, I asked him about the Periactin and couldn't we give that a try first? It takes a week to kick in, which will be this Sunday. He agreed with the understanding that if she had any symptoms - vomiting or the massive fatigue that we were to bring her straight in. This was the plan when we left on Friday night. So instead of driving to Virginia for Thanksgiving with my family we stayed put. My same friend who recommended the Periactin also invited us over for the holiday and it turns out she could give Martha Stewart and any Iron Chef a run for their money. Definitely one of the best Thanksgiving Day meals ever!

Ellie has seemed a little tired which is one of the two side effects they said she would have. The other is greater appetite. She has both. From Saturday till Wednesday Ellie slept better than she has in months. She is keeping all her food down. She was up Thursday at 4am because she was hungry so I gladly fed her. And she has been playing like there is no tomorrow. It's like she has to catch up. She wanted to sit in her princess couch and play with every toy she owns. She is not quite back to herself yet. She still is slightly irritable and the overhead lights bother her a lot. This Sunday it will be one week so we will see if the symptoms abate with the Periactin at its full effect. If that does not work we will either try the Diamox which still worries me or I will push for an MRI. That's invasive for sure because they have to give her anesthesia and intubate but much less invasive than exploratory shunt surgery and might weigh equally with the Diamox trial...maybe - putting a kid under is hugely hard on the body...ugh. I hate these choices we have to make. In the mean time I am working to feed Ellie as much as she can take. Her little feet even lost weight such that her AFO's are too big and she went down a diaper size. It was a year's worth of weight gain and all the moms of preemies out there know what a bummer that is.

That is how it's all going these days. We are feeding her, watching her, staying close to home and hoping for migraines. How crazy is that? Wishing that it was a migraine.... This whole experience is about picking the lesser of two evils. If it is migraines then hopefully in a few months they will abate if they are from the protonix withdrawal though migraines do run on my side of the family. And for the doctor that said that migraines don't last as long as 48-72 hours - you are so wrong.

All of the above is why I think I may change Ryn Tales to "All the Gory Details" (you never wanted to know).

At the end of the day I am very thankful that Ellie is here and that for now it looks like her shunt may be ok. At least we have a game plan or two and thank god for the wonderful medical community that does disagree in a healthy way and especially thank god for all those doctors that do listen to parents (nutritionists too). Ellie is better because of all of them. I am grateful too for my friend Holly who is so smart and gives me verbal and moral ammunition when I am out to push back when I need to, because it seems like I need to a lot sometimes, much more than I would prefer.

Ellie turned 7 this November 9th. She it still learning and growing and developing and the sweetest little girl. I am thankful I get to be her Mama.

Second Wind

2009-11-04T17:59:00.010-05:00

Pictures in order: 1. Ellie watching the Red Sox batting practice behind home plate where she got to hit the ball of the T this summer. 2. Ellie in New Port RI laughing at the man at the next table who is eating a big salad. He pretended not to notice that she was laughing at him...must have been from Boston. 3. Ellie at the Getty. We took her there many times before we left LA when she was only months old. It's a lovely place. Very peaceful with all that Travertine and dry desert air. 4. Ellie in her tent on the beach at Carmel. The water was so cold it put her off swimming for a bit. But she loved napping and laughing in her tent. The lack of sleep was less wearing on her. 5. Ellie as Snow White right before Trick or Treating. 6. Ellie in the morning as Snow White going to ballet class. She was basically Snow White all day. She loved that costume. Thanks to Liz who gave Ellie a lend of it! 7. Ellie carefully sampling a taste of the first Apple Pie she has ever made with her Dada. I put these pictures first, lest you should feel sorry for us after reading the post. It's amazing all you can do on no sleep whilst worrying. ;-)

It's been a long few months since August when Ellie went off her seizure meds (fully - we weaned for 6 months). I thought she would NEVER sleep again and if you have been reading Ryn Tales for any length of time you know how I feel about sleep or the lack there of...

Sometimes too it's just one thing after another. Luckily, in our case, these have been necessary things that have led to better days today - a better present. Here is what happened.

The last week of August Ellie was fully off her seizure medication Depakote during that same time her Protonix (a proton pump inhibitor that she used for reflux) was late getting to us. Needless to say, our vacation to California was a sleepless one. We had fun, but it was exhausting because between the reflux and Ellie's newly med free brain, we were up a lot....which took some of the joy out of it for me...seeing Big Sur through sleep deprived eyes was a sad thing. I know that sounds like whining and it is. I had a different idea of how I wanted the trip to be, but the powers that be, in a constant effort to keep me humble, had other ideas.

We finally got the protonix - which is compounded during our last week in Los Angeles. We got home and school started the day after labor day and Ellie was still not sleeping and vomiting and for the next three Thursday's she would come home from school due to vomiting and fatigue and be sick all day Friday and then recover on Saturday. Or mostly recover - she was a bit pale and something was not right. She still wasn't sleeping and all I could think of inwardly at her brain was for the love of God please rewire yourself up something quick please! To add insult to injury, her g-tube site started to rapidly break down like it hasn't since she first got it at -1 month (preemie moms you know what I mean by that!). Her open, cracked weepy skin that would make her scream like I have never heard her when the acid from her stomach would hit it. It was horrible, really horrible.

After three weeks we started to figure it all out. Here are the major things that were happening

- As I wrote about here the Protonix was bad...I still have not sent it to the lab to find out. BUT she is off it completely - that is the good that came of the pharmacy screw up.

- The pool water at the school was making her very, very sick.

- She outgrew her g-tube! Which makes sense since she has had it for nearly 7 years.

- Last week Ellie was out all week with a tummy bug and fatigue but no fever.

Perfect storm don't ya think. Good times.

All of this added up to a whole lot of late nights and me having to push my work till the evenings when Dave came home and weekends and I am still behind schedule.

We are truly blessed though. Our next door neighbors are both nurses and we called upon them. She is the uber wound care nurse at Children's Hospital Boston and got us Mitrozole powder and when I sent her a picture of Ellie's g-tube site was able to eyeball right away that it was too small and that Ellie needed the next size up. We could not have picked better neighbors, truly. It took a couple of tries, even though, we went in and got it measured for the docs to get the proper size. But we did and it's finally healed (she writes on November 4 - which means Ellie suffered since August with this!). Sigh.

I am also very relieved that she is able to be off a compounded med. People are human, if you are on a compounded med long enough it's only a matter of time before the odds stack against you. And it may be a long time because Pharmacies have many measures to prevent such things - but I am glad to be out of that game altogether.

I realized this week that I have been happier than I have in months. So much is resolved. Mostly I am happy because Ellie is REALLY happy now. My little insomniac. Her seizure med free brain did readjust - she has slept through the night all this week....

She is also off the Protonix and is only now on Zantac and Myralax. That is a huge deal after having been on Cisipride, Depakote, Protonix, Zantac, Myralax last year at this time. It's progress. Ellie's smile is the biggest it has ever been. Her eyes are more aligned than they have been since that bad surgery. She has found her voice. She is only slightly tired these days because she did lose weight with all this going on. She is showing more normal signs of appetite, which is motivating her to try food by mouth once again. Though it's been so long she has forgotten how to eat. This is sad, but workable... Her appetite is not source of confusion because it is no longer accompanied by nausea. I had to totally change her diet to be able to compensate for the Protonix so now her diet is more varied and contains more power foods that will support her growth. Did I mention she is also in another growth spurt, one that is as much seen in cognitive gains as it is in physical size?

Wild, let's just do nothing by halves in life because that would be way too boring....

Things are moving in a good direction. The Nap has gone away and Ellie is just plain more present. She wakes up smiling and talking and communicating. She is initiating more signs. She gets bored more easily and is more open to new things. All good problems to have.

In the middle of September I was feeling very bad. There were other stressors too with work especially. All of it culminated into the breath being knocked out of me. I felt like my zest for life was being leached from me by worry, lack of sleep, more worry, and physical pain in my back and arms from holding Ellie at night so much. I thought this is what middle age must be. Now I see that my spirit is resilient. I am also profoundly aware that for better and worse my happiness is linked to Ellie's by an invisible yet unbreakable chord in a note that close to g. Not having felt such a tie like this to my own parents growing up, I am grateful for the experience. It's very grounding though heart rendering when the chips are down. Better to have the heart rendered than no heart at all.

These last three months of hell have been worth it to get us to now. It's weird because I feel excited again, like when I was pregnant with her. Every morning I wake up I can't wait to see her. It's nice to feel this way again. I don't know where hope comes from. It could just be the extra sleep. It probably has to do with the fact that Ellie is making so many gains and is finally out of pain. She is happy. She is all smiles and giggles and full of life and loving and snugly and silly and wanting to learn and thrilled to taste "cheesy noodles" and finding salad a hilarious thing to eat and doing great in the patterning skills that are teeing her up for algebra...

I am grateful for this renewed hope. I was worried I was going down a bitter road that was leading to the death of hope, heart and soul. It's the road that everyone assumes you are already headed down when you have a kid like Ellie. All that Holland stuff is just another way to say cloudy skies for life. Instead I have found a second wind. I feel the same kind of excitement a mother has before her baby is born. That feeling of knowing that there is new love on the way and it's going to change everything for the better. I have that deep understanding again that this love is the only thing that counts and is what makes everything else meaningful. I am there again and it feels good.

Firsts: Bus, Pie, First Grade

2009-10-05T08:19:00.002-04:00

This is Ellie on her first official day of First Grade. She is growing up.

Next two pictures are of the pie Dave made with Ellie last night after we went apple picking. We found this great, small, easily accessible orchard, Dowse Orchard, and Ellie had a great time and we were able to wheel her right up to the trees. She picked most of the apples!

This is the first pie Ellie has ever made. Dave brought our coffee table into the kitchen and put all the ingredients on it ready to go and easily reachable for Ellie. He used the small dry erase to teach her about the ingredients. She used measuring cups and took flour out of the bag and put it into the food processor as well as the butter. We put the food processor on a switch. Ellie kneaded dough, put apples in the pie, shaped the dough round the edges. She did the spices and everything. Dave is so patient and enthusiastic about her. Even when she has moments of averseness to new experiences he never lets that dampen his sense of fun in the doing things with her! As a result, Ellie had a great time. You can see the E in dough on the top of the pie. E for Ellie, what else? She was very excited when Dave showed her the steaming hot pie coming out of the oven! Dave Rocks!

First time on the bus this morning. In the first picture she is pointing to her car.... In the second she is not so happy about going on the lift. Third picture is of Juan and Marge securing Ellie's chair. Fourth picture is Ellie in the wheelchair van...not looking too happy. Fifth picture, Ellie in the bus with a wall of glass and reflection between me and my only child. Did I prepare her enough for this...apparently not. Dave just called me and reported that the Juan and Marge said Ellie did not cry, but she didn't want to play with her toys and was very quiet the whole way to school. When she got there Dave was waiting and she did not give him her usual huge smile and the happy throwing up of her arms at the sight of him. Instead she was quiet....is this going to be an issue for her and her therapist later in life...? I imagine she is feeling somewhat betrayed and processing this change. If this makes her unhappy and she does not adjust the 3.5 hours of extra time a day is just not worth it. But I will give her this week to try it... :-(

Sleep, Bad Meds, and the Bus

2009-10-03T23:03:00.004-04:00

September was a blur of no sleep and work. And even now I don't have any business blogging. BUT so much has happened...

First, we figured out that her Protonix, which our insurance company will only pay for if we get it through their compounding pharmacist, was off. Dave took some out of the red bottle in desperation because Ellie has not been doing great since late August when she started this new batch, and discovered it had a distinctly orange hue. He called the pharmacist and they said to stop giving it to her...scary, no? I am sending it to a lab to find out what the heck it is and not putting her back on it. To say this freaked me out is an understatement. I am holding judgement until we find out if it is Protonix or something else...ugh. The whole thing has just made me realize I have to get her off all meds. I have met mothers who have discovered that the meds they are giving their children were made wrong by the pharmacy. CVS lost their compounding license because of errors in making the meds. In some ways it seems like only a matter of time before this happens and one day...I can't even go there. ugh. I wish we could get it through our local pharmacy because they are a mom and pop shop, they know us, they care....Blue Cross Blue Shield paid allowed this.

Since we discontinued the bad Protonix she has been sleeping MUCH better. I also started her on two homeopathics: Nux Vomica, for nausea and indigestion, and Gelesium for it's overall soothing effect on the entire nervous system. It may be working...she has slept through the last 4 nights....but of course now that I write this...anyway...am hoping I can replace the meds with homeopathy or anything else, like even healing what is causing her to need these meds...yes, her brain. But, it's good not to forget this is our goal, to help her heal her brain. Since Obama lifted Bush's bans there has been lots of progress in this area spurred on by all the returning vets who have sustained head injures fighting in all the bloody war zones....

Second, Ellie is going to take the wheelchair van to school this Monday for the FIRST time....!

The good here: she is more independent and we get 3.5 extra hours a day (that we used to spend driving her) to work. Since I am always up late doing that work I don't get done during the day, and I am not a trust fund baby, this is a good thing. The fact that I could REALLY use the extra time makes me feel guilty about even suggesting she ride the bus because it's so self serving, which is something I try to put aside being a parent. BUT she is going to be 7 in November. I rode the bus from age 5 on and am none the worse for it, though how would I know, really? See the back and forth? The mind is a terrible thing sometimes...

The manager of the bus company came to our house this Saturday morning to see if Ellie's Rodeo would work in the wheelchair van. His name is Juan. Juan has a big smile and kind eyes. He's a dad. Ellie gave him a BIG smile the minute he walked in the door and he addressed her directly. All great signs. She will be the youngest on the bus and Juan has it set up that she is last on and first off, god bless him! She will have an aid who is trained in seizures and CPR. The other little girl riding the bus has a nurse...seems like it might be ok. We are going to follow the van to and from school on Monday to be there for her if the ride was bad. If she is really upset by it, that may be it. She has riden in a wheelchair van for school trips so that won't be a first. Juan assured me the aid would talk to her and help her with her toys...ugh.

I am equal parts freaked out (about her safety and her emotional and physical comfort) and hopeful that it will be ok. She will be 7. It's time...right? We will see.

Picture: Me and Ellie in Dublin City Center, Ireland this August.

Morfeo? Morfeo? Where art thou?

2009-09-13T12:38:00.003-04:00

The God of Sleep once again has left us. For months now. It's wearing on us all. Why? Reflux, Ellie's brain learning how to sleep without Depakote, head aches, insomnia....

I swear the sleep deprivation is the hardest part of this whole experience. It makes me divide my life into to parts: before Ellie and after Ellie. Before sleep deprivation and after sleep deprivation. This is not a good head set to be in.

I am hoping that in time her brain will rewire, relax, etc. I may try some Skullcap. Ellie's not happy about it either. She wakes up screaming and rather upset. I hold her. She tries to sleep and just as she falls asleep again, she screams. She does this from about midnight till 4am...most nights. I am tweaking with her diet and water intake late in the day. I give her antacids before sleep. We gave her a bath last night before bed to help relax her. We are creative in our trouble shooting. It's hard though. I am feeling grumpy yet grateful that my little one is more alert and seems not to need a nap in the day. She is making huge gains in school. On Friday her new teacher started using letter sequences to teach her pattern matching in preparation for algebra. Ellie got it right away. She no longer slumps forward in her chair due to fatique. She no longer constantly rubs her eyes in tiredness. She also has more control of her eye movements so I am assuming her ability to focus is better.

She is also very interested in food and trying my food in particular. See all the gains and all the joy! This damn sleep deprivation is getting in the way of my truly being ecstatic about all of this. My bright eyed inquisitive girl is back in force and I am too tired to really enjoy it. Sometimes I think it's all in my head. And I take this approach - change my attitude and life will appear better. It works sometimes. At others it does not.

One day at a time....but if anyone knows Morfeo, tell her from me that we really need her to stop by and hang out for awhile.

Anatomy of a Beach Visit

2009-08-23T12:09:00.012-04:00

We have been getting Ellie to the beach a lot this summer. Not "a lot" as in when I was a kid and would walk down to the beach on my own, every day. But a lot for a kid with issues like Ellie and for working parents like us. ;-)

I have been very determined that this summer Ellie was going to have lots of Ellie specific fun because last summer we were in the house for most of it with our crashedcar and Dave's injured finger and the summer before that with my knee surgery gone supersonic. So this summer was going to be different. And it has been.

We have recently discovered Wingaersheek Beach. It's lovely. It's windy. It yielded up this story. We also go to Nantasket Beach which has great ramps and the sand is hard packed which makes it easy to roll Ellie across it in her stroller.

I was with one of our PCA's, Liz, in fact I call her "Power House" as a nickname because of her endless energy and drive to make sure Ellie has a full experience whenever she is helping us out. We are blessed to know her. I learned about Wingaersheek from Kate, who is my expert on accessibility in the area and she told me about the beach wheelchair. Thanks for that Kate! We finally got there and we love it. It is not free or cheap...but worth it!

When Liz and I were hanging outside the tent while Ellie was napping in it another mother came up to me. She was very tan and petite. She was with her husband and children and some extended family members. She asked me about Ellie's tent. I raved about it's awesomeness, because it is awesome, the best money I have ever sent. Then she proceeded to tell me that she also has an eleven year old daughter who was not with them and that they do not take her to the beach anymore because it's too hard because she is too heavy.

That made me very sad for the eleven year old daughter and her family. The mother

admittedly was a very petite woman, her husband was not, her other children looked very fit teenagers as well. I marveled at this. I realized in speaking with her that the beach is a huge hurtle to overcome with a child that can't walk and may be g-tube fed, need to be toileted, and have other serious medical issues. I am writing this post to tell you how we do it because there are a lot of things we have figured out that are worth sharing. There are also some beaches with "hidden" resources for the special needs beach goer.

1. It takes 2 people. There is no getting around this. There is just too much stuff to schlep. But that does not mean the second person can't be a preteen and up child who can stay with your special needs child while you make a run to the car with half the stuff. But we have not figured out a way to do this with only one person.

2. A pop up tent is essential. I got mine here for about $70. It has lasted us 3 years now and is awesome. It's huge. You can fit 2 beach chairs in it. Here are all the things we use it for that allow us to have a great beach experience:

a. Ellie takes her nap in it so we get to stay for the whole day versus just a couple of hours. When you read about how much we schlep, you will appreciate this. Also, and more importantly, many medically involved children fatigue easily and this can set off seizures and lower their immunity, etc. They need their rest. We bring a couple of fleece blankets with us and towels that we put underneath her so she can rest during a day at the beach.

b. We change her diaper there. This allows for privacy, cleanliness, and means we don't need to locate close to any smelly, noisy facilities.

c. We change her into her swim diaper and bathing suit when we get there and between swims and into nice dry soft clothes at the end of the day.

d. We deal with her g-tube dressing and g-tube boluses (meals) there - because we can limit the amount of sand and are protected from wind

e. We protect her from the sun. She has the most beautiful rose petal skin and does not change position as much as a typical kid will so having portable shade is critical.

The tent has made all things possible. Ellie certainly does not spend all her time in the tent but it is there when we have to attend to her medical life, need privacy and shelter from the elements. She loves it too as do all the other kids around. It's just plain fun and way, way EASY to assemble and dissassemble. It takes literally less than 5 minutes to set up and maybe 7 minutes to take down.

3.Accessibility. We have had success thus far with using her Rodeo chair and her old 3 wheeler jogging stroller which is now to small. However, it's really important to note, that Wingaersheek, and possibly other beaches have a beach wheelchair. We didn't ask for it last time we were there and I was planning to ask for it the next time but I am not sure we will get there again this summer. I wanted to take pictures of it for this post. However, a beach wheelchair, is usually big enough for an adult and can be rolled out into the water. Rolling out into the water is very important when at many beaches the tide is out and the water is up to your ankles for miles out. We were planning to either one of use ride in it holding Ellie, probably me - being lighter than Dave, or packing it with towels... If we get up there again I will take pictures. It's important to note that another mother told me that they actually used one with their child via the pack em in there with towels route but that the thing floated when it hit water because their kid was so light. Either way it get's your non-walking child to the water without you having to bear all their weight yourself. At Wingaersheek you have to ask - so ask where you are. Call the town and see if they have considered purchasing such a thing. A fund raiser at your local community club would be money well raised spent on a chair that allowed people who can't walk experience the beach!

4. Duoderm. We use this to completely cover her g-tube. We put it right over the dressing with a small slit right over where her Mic-Key button is. Then we put another small patch over the slit. This protects her g-tube site and belly from sand. That said the last two times we took Ellie to the beach we did not do this and all was well. Maybe she is big enough to handle tiny grains of sand that might get in her belly. However, we change her dressing after each swim and I have not seen much sand there at all. But if you are worried about it, as we were, Duoderm rocks. It's easy on the skin and totally keeps out the sand.

5. First Years Reclining Booster Seat. I learned about this seat from Billie, who is truly the master of figuring out positioning equipment. This seat cost me $24 at Target. They sell them at Baby's R Us too I believe and definitely on Amazon. Again money well, well spent. We take the liner off - which is simple - and bring it to the beach and place it at the water's edge so Ellie can play there and by the tent so she can play in the soft sand and in the tent if she wants to play there. We use it as well at restaurants and dissassemble it and put it in our cases when we travel. I will be very sad when she grows out of it. I think it goes up to 50 pounds so we have a ways to go.

6. Life jacket. There is a special needs life jacket that the kids at Ellie's school use that costs roughly $300. We don't have one. We need one. But for now I got Ellie a bathing suit at our local sports store that has blow up floats that go right into the suite around the belly and back. These help tremendously with holding her in the water. It is the suit she is wearing in the pics, though the blow up bits aren't in it then. They are easy to put in though and don't cause her any discomfort because they have some give and are not hard like some I have seen.

7. Cooler. We bring a cooler with our food and Ellie's food and water and meds.

8. Camera to capture all the fun you are going to have.

9. Book. We actually get to chill when Ellie takes her nap. That is an amazing thing.

10. Molded Ear Plug. Vicki, the amazing audiologist at Ellie's school made her a customized ear plug for her left year because Ellie has a tube in that ear. You don't want water in an ear with a tube.

To be honest, with my recent back issues, I am and always have been worried about what I will do when Ellie get's heavier than I can handle. The fighter in me just thinks I will hire some bigger person to hang out with us and help me lift her. I have no doubt I will figure it out. I have a lot of other blogging Mamas who have gone ahead of me on this one.

I truly never want to be in the position of going to the beach without my little mermaid girl who absolutely loves the ocean. She is so relaxed there and happy and content and absolutely loves the feeling of being in the water. So far she knows how to float and kick off things. She is all smiles and laughs. I love the ocean myself and I especially love sharing it with Ellie.

Facebookitis

2009-08-12T23:01:00.003-04:00

My blog has it.

It's not pretty and is making my blog anemic!

Catching up here and inspired by Julie & Julia to give my poor blog more attention. This record of this journey is, after all, something that is more useful to me and more sustainable and relevant than the constant and fleeting banter of Face book.

Ellie is going to be 100% off the Depakote in two weeks. After all the difficulty in trying for months to get into see her Neurologist, as some of you read, I decided to wean her myself. And to do so very slowly. I finally got Ellie into see the Neurologist a couple of weeks ago and he said, "Well if you wanted to wean her you should have told me." I replied, "I tried to tell you and in fact left several messages for you including a faxed letter to that effect." To which he replied saying nothing but taking notes into his computer. He then laid out a plan to get Ellie off the two remaining capsules she was on from the total of 6.

This week she is on a half cap in the morning and a whole cap at night for this week, next week it will be a half and a half, and then the week after only a half cap at night and then the week after he said a half cap every other night and then that's it....

What a difference though. My baby girl is more interested in tasting food, she is brighter, she is more interested in the world outside herself.

I can't wait until she is off it totally and a few months have gone by. I feel strongly her seizures were caused by the cisipride and there has been no sign of any of that activity throughout this process. I am hopeful. I am glad she seems to be feeling better.

My back: I started back boot camp at New England Baptist hospital this week. I am glad. It's good and covers your whole back. They said they usually set a goal for women to lift 40 pounds but my goal is 50. I figure that should cover me for a couple of years with Ellie. My pain level is greatly decreased as the toxic fluid from the disc that leaked out into my body has been absorbed. I have not lifted Ellie off the floor yet but plan to after I get a few weeks of the strengthening from the back boot camp. It's good to learn these muscle building exercises - mostly weight lifting. Like the PT for my knee, I will do them for life. Silver linings.

There's so much more to write about, but I am very sleep deprived at the moment as we had a rough weekend with Ellie putting in a couple of days and one night in the hospital. She is fine now. She got a tummy bug coming home on the plane from Ireland. They thought it was her ventricles... of course. Over eager interns are scary, not all cute and witty like on Gray's Anatomy - just plain scary. Like I said, more to write about.

But we were up till 4am that night, Sunday. And she just called out now and I was up with her three times last night and then had to get up early. Between jet lag and tummy bugs and hospital stays and trying to balance my job and my back recovery as well as all the household stuff I am pretty flat out.

It's one of those times when you have to laugh and take stock like one of my friends does by asking at the end of the day, "Is everyone still breathing? Yes? Well then, it was a good day."

;-)

Adventures in Energy Healing

2009-07-12T15:32:00.007-04:00

Do all mother's of children who can not walk injure their backs? I want to know. Many of the mothers I know of kids who can not walk and are total care and are over the age of 5 have bad backs. UGH!

This Monday I bent down to pull a teeny tiny weed in my garden and stood up again and felt a horrible burning pain in my lower back. An hour later I hopped in the car to get Ellie and after the 25 minute ride could not get out of the car without great difficulty. One ER visit, MRI and CT scan later I found out I have three, not one, not two, but three bulging discs in my lower back. Gahhh!

I am not happy about this at all.

It has been a trying 10 years of knee issues and now this.

In total desparation have finally gone over to the other side of medicine and started to study the effects of energy on the body and using energy to heal it. So for all of you people out there in the blogosphere who have been patiently telling me to do this for so long, I am looking into it and have had amazing success healing my knees (with help). They are now tip top (well still have some crepitus) but my mobility is nearly 100% (am still afraid to try a full squat but may have to now) and am running up stairs and my knees are not swelling and unstable anymore... Don't get me wrong, I am keeping up with my physical therapy - and will do that for the rest of my life. BUT, what started all of this was that about a just over a month ago I was having an "acute arthritic flair up" that was so painful not only could I not move my knee, or put any weight on it, but even the sheet touching it was painful. I was in agony. OK, I am only 41 and having a "severe arthritic flair up" is the term my Ortho Doc used...see anything very, VERY wrong with this picture?

A couple days before this flair up, I had seen amazing changes in a friend (who was suffering from Lyme Disease for a decade and now she suddenly looked 10 years younger and all her symptoms gone). I have known her since we were in college so I know what she looked like back then. Just amazing. Turns out she has started doing energy work on herself and with the help of an energy practitioner so I called her to find out who her person was. I called Carla and by the end of the hour+ session my knee was out of pain and the swelling receded and by the next day I was up and walking. On top of that the lack of stability in my left knee was gone as well. I have not had any issues with either knee since.

I know if you follow the links and read all that stuff some of you out there are going to think I have lost my marbles. I am a sceptic for sure. A prove it to me type of person. But Carla's rates were so reasonable and I was in such agony, I said, I am willing to gamble on this small amount of cash because working with someone over the phone to heal my knee sounds nuts but a whole lot better than UFlexa Injections and total knee replacement surgery ... I was totally desperate. It was a fantastic gamble.

Even after my knees felt better, I followed the medical route - my MRI showed severe arthritis in my right knee and moderate in my left, so I was referred to a knee surgeon to discuss knee replacement. My appointment was a week after I had my session with Carla. I went to see the doctor and he said, "Hey you are not walking with a limp." I said, "nope" and then he examined my knees and said, "You have full range and no swelling. Are you sure these are your MRI results?" I said, "Yes, I am sure"

He said, "Come back and see me when you are 60"

OK, of course I didn't tell him I was doing energy healing on my knee, but you know maybe I should have...I work in academia now as well as with Executives. All of this is really hard to explain...I am of course worried about my credibility, which is obviously why I am blogging about it...or maybe it's the pain meds talking...

Now my knees are working great for the first time in a decade, and I mean GREAT. I feel strong in my whole leg again like I did before I smashed my right knee into a bar under a table in 1999. I have 33 inch legs and used to competitively race bicycles so that is what I am comparing this to. Strong!

I am not dissing regular medicine in any way. It saved Ellie's and my life. I am also not advocating for anything, just sharing my experience over the last month, which to my rational, overly educated mind, has been quite bizarre but wonderful in the results.

Yet within a month of this discovery of energy as medicine and having taken an intensive workshop to learn the techniques of that with some German New Medicine thrown in, now my back decides to act up.

I am doing both things again, working using the new methods I have learned that include the emotional work of healing one's negative mental patterns(i.e. how we think and feel about ourselves, self talk) as well as going the medical route. Though in regards to regular medicine, there is absolutely NO way I am letting them do surgery! I will do aggressive PT. I will do this energy and emotional work.

This is a rant in all the most classic ways. There's really no point. Just that, it sucks when your back goes out. The very, very cool thing is that for the first time since Ellie was born there is enough help. There are people who are going to help me for Dave's entire day of work when Ellie is out of school. She has 6 weeks off in 2 weeks. In terms of shifting my consciousness to one of abundance versus poverty, this is a good sign.

The good news, in the philosophy of German New Medicine, my back injury means I am healing from something physical and something emotional (an old wound). It is also good that Ellie, though she had a small fever last night and this morning, has been doing great and Dave too (no more severed digits so he is doing well!). One of my favorite moms used to ask when determining if it was a good day or not, "Is everyone still breathing? Yes? Then it was a good day!" I hear ya sister!

***I woke up this morning (July 13th) and had no back pain. My back is still a little stiff and I am going to the spine clinic to learn the exercises today...but there it is.

Ellie's first time seeing fireworks

2009-07-07T16:46:00.005-04:00

Awakenings and Weaning Off Depakote

2009-07-03T09:31:00.007-04:00

This post is about weaning Ellie off Depakote and has a metaphysical edge to it. So for those of you who are not philosophy fans this post is not for you. Just skip it. I however have my Bachelors degree in philosophy and ever since getting that education can't see the world without it - so bear with me.

I am weaning Ellie off Depakote against doctor's orders.

There it is.

The question that is torturing me is why didn't I do that as soon as it started making her sick? In 2007 when she was four and a half in April she started to have seizures. Small ones. I took her to her Neurologist who put her on Depakote and told me that someone with Ellie's history, I believe the technical term she used was "these kids", if they are gonna develop seizures do so between the ages of 3 and 5. And there Ellie was at age 4 and having these small absent seizures. She did throw up if she was eating and then she would sleep for 40 minutes. You can read about that here.

Within two weeks of medicating her, on Depakote liquid, she refused all food. This was a huge blow. We had worked with her for thousands of hours to get her to eat. No small task with someone with the level of dysphasia that she had out of the gates. And I mean we worked with her right in the NICU. At the point of the seizures she was eating ALL her purees (4 different meals) per day and that was about a cup and a half of pureed food in 15 to 20 minutes with us feeding her. This was a HUGE accomplishment on all our parts and was 4 solid years with over 8 hours a day, 365 days per year, which calculates to roughly 3,000 hours per year for over four years which is about 12,000 hour plus of working with her to get there. That's a lot of effort, heart and soul going into getting her to eat by mouth. Can you feel my pain when it was all swept away in a two week period?!!!

For her to just refuse food was a hideous thing. It had such a huge effect on me that I lost my objectivity and a little of my logical reasoning skills and my energy was deflated. I asked her neurologist about it of course and was told, no Depakote does not affect appetite other than to increase it. (so I must be crazy right?). No you should not try another drug, because Depakote has the least side effects.

I kept trying to get Ellie to eat for months. And was told, now she has a sensory aversion to food. She is trying to control her environment. It's become behavioral...

Ugh. And all this time I wasn't listening to my inner voice. Actually that is not true, my inner voice was going crazy, shouting "This is wrong! All these explanations are WRONG! Get her off that crap!!"

Now, in 2009, 2+ years later I was told that the Cisipride she WAS on causes seizures. She has been off that since January roughly - see here. I have recently met a couple of adults who are on Depakote who do report that it makes them dizzy, tired, and nauseous. Hmmmmm dizzy and nauseous and tired? Go figure - if I felt all those things at once I wouldn't be eating either.

This realization hit me very hard this week. What the f*&% was I thinking leaving Ellie on the Depakote this long? I should have fought harder with the doctors to get her on a different drug. The Cisipride study showing the link to seizure activity was only made known to my by my Doctor in December of 2008. And back in 2003 when we put her on it Ellie's reflux was really horrible, so not sure I would have taken her off it had I known. Because she used to vomit 30 times or more a day. But I should have used my logical reasoning better and worked harder to preserve her eating.

I feel like I lost my mind a little over this one. I feel that if Ellie had NOT had a G-tube all the doctors and everyone else would have been supportive of figuring out a better med for Ellie. I would not have been alone asking these questions, knowing something was very wrong but not sure what.

Now it seems so obvious. Now her eating issues MAY be behavioral.

She is on half of the Depakote dose she was and she has grown. I am sure that her level is way below therapeutic. I am weaning her very slowly to let her system adjust. She is less tired. She is enthusiastic at the table now and want to touch the food and feed us and she will sometimes actually taste it. She thinks meal time is fun and funny. That is progress and maybe she is feeling less nauseous.

Regrets are unproductive. There is no question of that. When I work on teams if something goes wrong my approach is always, ok, let's fix it and then figure out what happened so it doesn't happen again. There is no blame. But in the Mama role, I do feel like I let her down and that is a heavy burden. The me of today is like, What were you thinking? to the me of 2007, who was a very different person (that is the metaphysical part, in case you were waiting around for it).

I know I am on the right path now with Ellie and the Depakote and that it was right to take her off the Cisipride. Her scope 6 months ago was proof of a very healthy esophagus and digestive track which the Cisipride, Slippery Elm, Zantac and Protonix and food combining diet were responsible for. But man I wish I had figured all that out before now. Eating is one of the things that gives us something in common with everyone else. Chewing food in the mouth is so important to digestion because there are enzymes in the mouth that are not in the stomach. It's healthy to eat by mouth.

I am hoping that once she is fully off the Depakote she won't feel so tired or dizzy or nauseous. I look at pictures of her when she was three and see this bright eyed girl with eyes aligned. Then pictures of her after show a blurry eyed Ellie. I want my bright eyed girl back. And for the record I am really sorry that I put her on a med that made her feel so exhausted and sick.

Crossroads

2009-06-21T23:47:00.004-04:00

I am at one. Standing there looking at all the directions I could go and feeling a bit paralyzed. It's one of those situations where you can't stay where you are but you also don't want to go - but since you can't stay - you have to go and there I am. Standing in the middle of intersecting choices and paths laid out before me with all the ambiguity and mystery the future has to offer up. The longer I stand here the more my legs ache to run, the more my mind wants to pick the right direction. If only I knew what that was.

Instead I stand in the center of the intersection, looking and turning and peering down each road. Sometimes I hope a car will come along and hit me so I am spared the decision altogether. But that would just be too easy and I have learned from long experience that life is rarely easy or fair.

I am gonna wait awhile longer, as excruciating as that is. Take some deep breaths and wait for that gut deep certainty about what to do.

Jaded

2009-05-28T17:11:00.006-04:00

I think I am.

We had Ellie's Individual Education Plan (IEP) yesterday. I loved what was written. IEP's are very hard to get right in terms of balancing the laws of your state and the needs of the kid and having them make sense and be descriptive and succinct enough to be workable by many. This one was beautifully written with a genius that has written Ellie's IEP since she got to her current school. Each therapist as well contributes to this great foundation that was laid two years ago now. For that I am very grateful having witnessed a truly ridiculous and inappropriate, nonsensical that was produced by the public school. I know the difference from a good one that makes sense and is actually about Ellie versus one that is about everyone ideas about a kid with CP and brain damage who is NOT my Ellie. There is a big difference and her current IEP is brilliant in all aspects and especially in comparison.

That said, I was also happy to make some specific additions.

The additions I advocated for were made, sometimes right away, but many times only after I insisted several times like a broken record. That's fun feeling like you are being unreasonable when you know you are not but you are the only one willing to say what is unsaid by the group round the big conference table. Good times!

One addition I had to insist upon was the use of Intellikeys keyboard because we are using it at home. I feel I am still at odds with the school about Ellie using multiple modes to communicate. Not once did the AT specialist use the word Intellikeys. I felt this was a sign of resistance and am not sure they will support the use of it by others. This really bothers me. This makes me think I need to check in and track it to make sure it is supported as much as the other modes this person prefers. I feel like my wishes for my daughter are not respected when I have to do this. I track conversations for a living and diagnose and intervene on group dynamics and leaders not towing the line for the team. I know what this looks like. It's a bummer to see it in this setting. In this case the person thinks they know best with a conviction that is unshakeable and unassuageable and isolated from dialog or external input.

Their argument is that Ellie's energy runs low at times and for those times she needs different ways to communicate. I get that, it's not a bad argument. My argument is that she has great use of her hands so let's optimize that and give her a chance to build up her stamina. I have seen Ellie's eb and flow of energy. I get it, but I will not buy into limiting her because of it or using it as an excuse. Ellie LOVES to be busy doing different things. If she is mentally stimulated she will wake up for whatever it is. My argument is also around having the right physical set up for Ellie to succeed in. One of the therapists in the meeting noted that when Ellie had the right positioning her accuracy went from 30% to 70%. That is a big deal. They are tracking her accuracy so they should have the right set up right away. Everyone agrees on this in theory but it doesn't always happen.

The jaded part comes in where I think I need to watch it closely. The part where I wanted things explicitly stated in the IEP. I hate being like that but after this year of struggle I feel like there is no safe place. Yes these people care about Ellie. But she is my responsibility for the rest of my life. That makes my concern far deeper and different from theirs. When they get defensive, I just feel suspicious. And that is jaded. Sigh.

Maybe no parent can ever rest on their laurels (what are laurels anyway?). But sometimes it just seems like there a way too many plates spinning in the air for far too long. Way too many battles to fight and plans and

strategies to implement and watch over. Ellie's worth it and then some. But still, I feel jaded and untrusting and that is not fun. I know I started out very trusting of life and with this feeling that people always do their best, because I do.

Now I am jaded.

What's next? Where do you come out on the other side? It's gotta be a place where wisdom resides - just not sure what it looks like yet, but looking forward to getting there...

Ellie's Second T-Ball game

2009-05-26T09:46:00.004-04:00

There were no tears only excited happy dances and finger spelling the numbers of bases run.

Ellie's first T-Ball Game

2009-05-15T07:30:00.013-04:00

Last Sunday we took Ellie to her first T-Ball game, which was on Mother's Day. And it was the best Mother's Day present ever!!

Thanks to M. S. and the others like her who make this possible. Ellie's team is called the "Red Sox" go figure. The high schoolers you see wearing the "Buddy" shirts take the kids around. We got to varsity soft ballers who by the end of the hour had learned some sign language and showed Ellie how to throw the ball, bat off the T (hence T-ball - thank God right? was really worried about someone pitching the ball at Ellie and was very relieve that is NOT how it works), and running the bases. In some ways it was a difficult hour. Ellie was scared and everything was new. There were tears and protests. Dave and I were allowed to jet out onto the field to give her support and explain about the baseball diamond and count the bases. After 50 minutes and she hit the ball off the T she started to enjoy herself. She especially loved the fist tap with all the other players at the end. After the game we all went to dinner and Ellie tried chocolate cake - that is what is on her lips in the last pic.

I learned a lot that day. For one, Ellie did NOT like the hat. I wonder if she is a closet Yankees fan. Either way, I got her a pink Red Sox hat today and when I showed it to her she smiled. I also got her a pink and purple leather sparkly glove - which she seemed to like too. I also learned that there are ways to get out in the world if you look hard enough. Thanks to Holly for telling me about this. Isn't it always the other parents that you learn the most from? It has been that way for me since having Ellie.

We are going to go every Sunday. I am so happy to get to have this experience. In some ways I often feel very isolated from life. Marie, the woman who runs it and conceived it and started it, has opened up the world for us in a way that is extraordinary. Thank God for people like her and everyone who helps her. We hope that Ellie will get more comfortable and that we can sit back and cheer her on with the other parents. Having never had that experience, I am looking forward to it!

Happy Mother's Day Everyone!

2009-05-06T18:45:00.004-04:00

My beautiful friend Julie, also known as Queen of the Meadow, sent me this endearing, funny video with a heartfelt feminist twist to wish me a Happy Mother's Day.

Thanks Julie - coming from you that means a great deal because you are one of the best most ingenious, loving mom's I know! You made my day and you made me laugh which is always good for the soul.

Miss you!

I have to say I have been fortunate to have had chance to learn from some amazing moms. Thanks for all you have taught me and all the support you have given me Holly, April, Kate, Julie, Jacqui, Billie, Linda Scotson, and Sue and all the many mothers who chime in on this blog. Thanks for keeping me honest and keeping it real. Hope you all have a great Mother's day!

Crushing Worry

2009-05-01T09:55:00.004-04:00

Some times being a mother just truly sucks. I feel so inadequate for the task today. Ellie has been pale and tired since the Cranial Sacral weekend intensive. And in the afternoons her eyes are in a somewhat sunset position. Sunset position of the eyes can be a sign of pressure on the brain. Her head circumference has not changed, she is not vomiting and her eyes dilate fine...

Today if she is like that in the afternoon it's off to the doctor.

She has been perky in the mornings though not at her baseline. The CS people say she is working stuff out and that it's normal to be tired. Dave thinks it's neurotoxins that have leached out of her legs from the botox and into her brain. He swears this happens every time we do botox which she had two weeks ago but has not needed for one year...

I am really kind of done with all interventions at this point except I think The Scotson Technique which is so so so very gentle. Cranial Sacral as it turns out is NOT gentle. Botox is NOT gentle. I think all these things have caused Ellie's body some shock which is draining her further.

We have not been doing the Advance therapy for over a year. It takes time each day and I have been working and we have been making strides on other fronts with Ellie. But I am going to start it up again. *I want to bring them here to Boston to show me the latest advances in that therapy which has helped, along with the nutritional stuff, Ellie the most out of anything I have tried. It is restorative versus aggressive. It seems to honor the child's body in a very gentle and congruent way. It is also the only thing that has not produced ANY bad side effects. Remember in earlier posts how I described all of children's medicine as choices between lesser evils? Well nothing has changed...

*If you are interested in coming to the sessions that we have with them email me. I am thinking that we will do it this summer. When I get a date I will post about it here.

I am overwhelmed and crushed under the weight of my choices for Ellie. Managing and safe guarding someone's precious and deserving and beautiful life is tough going. I feel that weight right now and can't help but feel I have been having missteps for a year.

But here are some of my recent discoveries on the nutritional front that are a good evolution of my understanding of how Ellie's intake of nutrients can help her heal her brain - which is how I approach anything that goes into her body:

Coconut oil. This is a saturated oil - as it is solid at room temperature - it melts at 76 degrees. BUT recent studies have shown not all saturated fats are created equal. Coconut oil is a good fat: anti microbial, anti viral, antibiotic. It has a lot of great stuff in it for the nervous system too. So I have replaced Ellie's daily dose of flax oil with pure, organic, UNHYDROGENATED, unheated coconut oil that I bought at Whole Foods. She is doing great on it. It is also very healing as a lotion for the skin and one of the purest things you can put on the skin. I have been using it as a night cream and it's awesome. Just make sure if you try it you get the organic unprocessed stuff that I highly doubt you will find at Walmart.

As it turns out almost all Flax Oil on the market has some degree of rancidity. Figures right? I had picked Flax because when Ellie was younger the fish oil seemed to make her reflux... Ugh. Mama -0 / universal forces of darkness - 1

So now she is back on Fish Oil and it is going well - just 3cc's per day. You can buy fish oil that is "Pharmaceutical Grade" which means that all the mercury is processed out of it.

A big realization I am having is that a gentle approach is so critical to my little girl whose system is delicate. And when I say delicate I don't mean it's not strong. But think about it. Ellie has never eaten anything fried, processed sugar, caffeine other than in the NICU in the first two weeks of life. Her system is really sensitive and she is hypotonic inside and out at the moment. And she is small for her age - though I am proud to say she is now on the second line up from the bottom on the typical kid, NOT born three months early weighing 2.9 pounds, growth chart. When I lift her these days I have to go more slowly - her muscles have not caught up to her weight and neither have mine. Slow and easy and careful is how I am feeling these days. Having a kid with this much trauma and danger has had me on an adrenaline rush for years and I am depleted from that pace. I think the road now has to be a one about pacing. Which is a nice change. When someone is on the edge of death there is no time for slow and gentle - it's all fight and fight some more. We were there for a long time. Realizing we are not there now is a good thing as well as an adjustment. I always say to Ellie when I have to do something to her that she seems hesitant about - like brush the snarls out of her hair - "Gentle Mama" and make the sign for "touch gentle" and she relaxes. I need to remind myself to be gentle too on every front especially with my outlook on life and how to balance it all. I guess Spring is a time for transition and it takes an angry burst of energy to break through the frozen thresh hold to grow and evolve. That's where I feel I am at, at the point of changing once again. Change is hard.

In my next post I have to tell you about FPIES. Which are food sensitivities that show up somewhat like allergies and only a few doctors pay attention to.

Love and kind thoughts to all parents out there under the crushing weight of raising a child with multiple medical issues.

Addendum: I picked her up as school today ready to go to the ER. But, though she is tired, and her eye lids slightly droopy, she did not infact have sunset eyes. Dave recalls clearly that every time after BOTOX that in roughly 10 days Ellie gets really tired like this. Maybe he is right that it is taxing on her and after that amount of time it leeches into her system. Great right. Dr. Webster always says the only risk of the botox is risk of no effect. I think he is wrong. None the less, taking her to the ER where they will put in an IV and subject her to radiation is something we will wait on. She was able to pay attention. She was signing the entire song "A You're Adorable" to me on the way home and in the absence of no other symptoms (though fatigue is one) I think I will keep a close eye on her and see.

Feel like I am walking on the razors edge - again. Don't think I will EVER get used to it.

First Mother - Daughter Trip (anything really)

2009-04-23T13:06:00.004-04:00

Ellie and I are on our first road trip just use and another mother and daughter. Our first mother-daughter thing ever...it's kinda cool.

She was a trooper on the 6.5 hour drive to Vermont. Google said it was only a 3 hour 45 minute drive but then factor in we got lost and had to stop twice - that's a really long trip. And I wasn't sitting next to her like I normally get to. So Ellie played and I got a crook in my neck. But after finally getting into the hotel and giving her dinner and letting her sit on top of me (because I am the human couch) and play with her toys she was much better and slept really, really well. She woke her sunny self.

We are here for a three day cranial sacral intensive workshop. From 9-12:30 and then from 1:30 to 4 a therapist will work on Ellie. It's a spiritual thing too the way the therapists are approaching it. They used a circle and talking stick to open and a short meditation and then on with the work. Ellie lit up when she saw her therapist, Amy. She was delighted. And Ellie isn't delighted falsely. She no room for anything but genuine reactions at least at this age. Ellie as been working hard. She kept drawing the therapists hand to where there is a non-working shunt in her head pressing on her occipital lobe. Together she and the therapist gently tried to shift it (fractions of millimeters) to relieve the pressure that causes Ellie to be dizzy and not be in total control of her eye muscles. I really hope it worked. They also worked to remove the energetic imprint of that botched surgery. I need to let go of my own guilt about that too so that I don't hang on to it.

They were also working on some of Ellie's birth trauma which is not in short supply. And when I say 'they' I mean that is where Ellie decided to go. It sounds weird but it is a collaboration. We have done cranial sacral work with Ellie when she was 2 to age 3 and that got her eating by mouth. We have been doing it once a week for a year to help her again with everything. Growth is hard on her because of her Cerebral Palsy.

The whole experience after the first four hours has shown me just how connected we are to our children. When they were working on Ellie's birth trauma I got a pain where I had my spinal. When Ellie was struggling with the emotions that came up around the shunt I felt it too. That's the deal though isn't it if you really love your child? The good with the bad. The pain with the pleasure. You are never really free again and never alone again either.

It's amazing to see Ellie work so hard and stretch and grow into her full self. She is so relaxed now and sleeping so peacefully. Pictures to follow.

Get Angry or Get Better?

2009-04-01T10:51:00.003-04:00

Sometimes I chose the path of anger. That's right, chose. I don't buy it when people say, I couldn't help myself. You can always help yourself, even if it's just being able to control, monitor, or mitigate your inner state of consciousness.

But sometimes it's hard. I find it hard at the end of Winter when Spring feels like it will never come and I am sleep deprived and overwhelmed by managing mine and Ellie's life. Three doctor's visits this week and a Baker's Cyst behind me knee are not helping...

I can also chose to learn from my anger and the difficult things that happen in life. I take that path just as much, probably more considering the big picture. Decide for yourself in reading my blog. I have been angry about Ellie's computer teacher making her use a head switch. If Ellie didn't have such great use of her hands I would be all for it. But head switch? On Ellie? Come on!!! Ellie's head is the most difficult part of her body that she tries to control. When, oh when are you going to see my kid as she is, not as you would like her to be?

Sigh. See that? Up there is me giving in to anger.

Ann has reminded me that there are always two sides to every situation. I am not sure how to learn from this situation yet or what the other side is of Ellie's hands being totally written off and her being made to use a head switch. But I am going to start to look for it and try to understand as I have been but without the anger. Any suggestions from any readers will be appreciated.

It's good to be reminded that everyone makes mistakes, not meaning to, and without malice and that they deserve compassion too. If everyone thought like Ann seems to, the world would be so much a better place. Thanks for setting such a great example of this principle in your post here!

The Trouble with Experts

2009-03-28T21:36:00.004-04:00

I have been thinking a lot lately about experts and expertise. Malcolm Gladwell has researched this topic in his book Outliers. Good book, I highly recommend.

And this is probably a post that I should use for the organizational development blog I need to start just to get all these posts out of my brain. But it applies here because anyone in our situation has to deal with the so called "experts" all the time. They come in all shapes and sizes from the obvious ones called doctors to therapists to school psychologists and on and on. The more issues your kid has the more experts you will have telling you want to do and what you can't do and more importantly what your kid can and can't do.

The trouble is that if Gladwell is right, expertise has its limitations. It takes roughly 5 years of practicing the same thing 8 hours a day to become an expert in it. Throw in all the differences in human functioning in each different human and then add in the differences in injuries, well you can see where this is leading. It's really hard to apply all that expertise. Doctors have a hard road when it comes to this. And don't get me wrong they have helped us loads. They have also hurt Ellie irrevocably so just as much as they have saved her life.

There is a saying in OD that I heard from a woman I was training to do a leadership intervention. It is this:

"One size fits one."

It has stuck with me. It speaks to the need to take each case you come across and treat it like it's unique - because it bloody well is!

The problem with this approach is that if an expert does not continue to keep the same attitude of learning and humbleness that they probably had when they were training, they miss a lot of differences and uniqueness. Which leaves them open to being very wrong. Certain things that have been suggested for Ellie that have clearly been wrong and one look at Ellie would tell you that. But that is the problem with expertise. It can blind a person as much as it can lead them.

And someone who relies on being an expert to hang their identity on will surely fail to have that questioned in any way. They will reject any data that was beyond their reckoning and that may contradict their expert opinion. This is dangerous at worst and a big waste of time at best.

The trouble with expertise is that it can make us stuck. It feeds the ego. It comes cloaked in prestige. It tells us who we are and who we can have power over. It's so ingrained in our society that I have found when I don't take this role when I am teaching my students it makes them really uncomfortable and they may doubt my competence. They don't like it when I don't spoon feed them or if I question something that they think should be an absolute. I can tell you there are very few absolutes I have found to hold true. Other roles like helping ones or collaborative ones have strict definitions for use and context as well as where they are allowed in hierarchy. And that is really sad. Sometimes life feels like it's about power shifts and control versus learning and discovery and accomplishment. As if controlling others was the task as opposed to actually creating something useful, like an assistive technology set up so a kid can find her voice.

I am having some trouble with experts these days. I am having trouble with them not listening to me and not allowing me to collaborate with them. It's hard. It's prevalent in our society.

But if there is one bit of advice I could give anyone with any expertise it's this:

"One size fits one."

Deal.

Another Stargazer Poem

2009-03-16T18:26:00.009-04:00

I think this poem is about missing a loved one or feeling far away from God. Stargazer Lilies are my favorite because of their fragrance, the very essence of Summer, and they are so luminous. Walking in a moonlit forest is exactly where I want to be when I am blue.

Here you go:

Another Stargazer Poem

I was god that night
Walking through the trees,
My head turned upwards
Taking in the stars
The air was alive in it's smell
It smelled of life in all it's stages
The scent of birth and pain and sex and decay
Hung in the air like summer incarnate
And I felt like the center of it all
It was all around me and over me and inside me
Living things cried into the night
And their moans crashed upon my ears
And I was happy
And I was alive
And I was god that warm night
And I wish you could've been there
When I looked at the stars and saw your eyes
Looking down on me

by Tearon Uzuki

Ellie update: no fever all day today - so that is good. Still very sleepy and coughing now. Trying to keep her moving so it doesn't all settle into her lungs. Gave her UMKA Homeopathic cold care as well as Echineacea tea, frankincense essential oil on her feet, foot soaks, and a whole lotta love....let's hope this all works.

Cabin Fever

2009-03-15T19:10:00.002-04:00

I have it bad. Ellie slept on me for upwards of 5 hours today. And she is still sleepy. It's the flu. But I secretly wonder if she is just done with Winter and decided to turn into a bear and hibernate? She has been wanting to read "Where oh where is baby bear" again and again. Maybe that was just her way of saying, "See you in June."

Dave is in Ireland getting his first real break in 6 years since Ellie was born. I'm happy for him, it was my idea. And I am really glad he got out before the plague hit.

It has been six years too. Six years of interrupted or no sleep, six years of holding our child who is often sick, six years of trying really hard to push a twelve foot bowling ball up Mount Everest. I think we have done pretty well so far and I know we have given it our best and will continue to give it our best and then give the rest that it requires of us. Because I am sure it will take all I have. But the last two days, with no one to talk to but Ellie, who is only available for consult between the continuous nap have made me see how isolated we are in many ways.

My family travels right by our exit off to see each other, only cautiously seeing us when their guilt gets the better of them. I see the little girl who lives down the street taking advantage of this warm day to ride her bike. I hear the other kids in the background when Dave calls to check in. It's all making me a little sad today. Maybe because I am sick too. Not sure.

I feel really isolated and on days like this it feels like it will always be this way.

A few pics of Ellie's Ballet Class

2009-03-07T18:07:00.003-05:00

Pink Pony Ride

2009-03-01T21:32:00.004-05:00

Over a year ago now, Dave bought this little blue scooter board so that we could sit on it and help Ellie use her gait trainer - also called Pony. Ellie got pink pony (who has yet to be officially named by Lady Muck) from Santa. Being snowed in has its benefits in finding ways to make the day fun. We put it under pink pony and were able to take Ellie for a ride. She love it. We should have video taped it but no one had an extra hand with Dave in the back and me pulling from the front, but the squeals out of Ellie are a testament to all the work we have done on raising her diaphragm.

Warrior Mama and my Direct Selection Kid

2009-02-22T19:13:00.006-05:00

When I was pregnant a good friend of mine said, "Wait till you meet Mama Bear!" And I was like, "Who?" And he chuckled knowingly and said, "Oh, you'll recognize her when you see her."

He was so right. There's no one or thing I will fight for like my child. All Mama's out there know what I am talking about. And not to slight the Dads, because there are certainly Papa Bears too.

You know from the last posts that we have been struggling with figuring out what Ellie can use to help her communicate. I have been VERY frustrated with one of the specialists at the school who is the gate keeper to technology for Ellie and the same person who has been shunting Ellie down a direction that has felt like the wrong way to go but I didn't know why. It wasn't until Friday when the outside specialist came to observe Ellie that I could put words to why. But wow what a relief to finally have the words to put behind my nagging yet previously unfocused conviction.

To back up just a tad, the school has been working with Ellie to figure out what technology would be best for her, and this regard they are getting a lot of it right. We are really happy with the work going on in speech and OT and regarding the use of symbols and just the shear creative variety they are using to approach it all.

But there is one area that has been keeping me up at night. Early on last September Ellie got to try "Intellikeys" a couple of times at best. At that time the specialist working with Ellie was new (to Ellie) using new material in a new room, etc. See that word "new". Putting "new" in front of Ellie is like throwing down the gauntlet and is the thing that makes Ellie decide she is going to resist until it's not new. I always try to mix the familiar with the "new" so that she overcomes that hurdle more quickly, kind of like hiding the peas in the mash potatoes.

In January, I had asked this specialist about the strategy again and she told me that Ellie couldn't manage Intellikeys and that Ellie would probably use a number of ways to communicate, like finger spelling, signing, and switches. She then back paddled and said that she wasn't saying that Ellie would never be able to use it...

This did NOT sit well with me.

She also told me that she tried her on Intellikeys because of what she was told Ellie could do and that Ellie did not demonstrate that. See my comments on New - which this specialist didn't realize. When I told her about that monster named New, she looked away and checked the time and then just stared at me. I realized she was not interested in any data from me, "the over compensating, unrealistic parent figure". That's so old school. I hate it when teachers take the "I'm and expert and have nothing to learn from you, oh bothersome parent" approach, which effectively shuts the parent out. Which, of course, in my world is a critical error.

Mama Bear has been raging inside me ever since, but with no words and only a feeling that this approach was wrong. The bar, by this person, was set low on Ellie. All the stuff she is doing at home doesn't relate to what is happening at school - at least when it comes to accessing the computer.

In the mean time, Dave got Ellie an adapted key board for the lap top she inherited. Her very first time on it, she proceeded to try out every single key to see what each one would do. She ended up discovering 7 keys that we didn't know about. This wasn't a perfect set up but it was something.

Finally on Friday I got an Assistive Technology guru in our home to check out what Ellie can do and to try her on Intellikeys when I was present so I could provide the familiar to ease the New. Ellie was able to flip through a familiar story and learned 4 new keys there and then (though until we put a familiar story to use the keys on, she would have nothing to do with it).

The upshot of the meeting was a few really important things:

#1. Ellie is a Direct Selection kid - meaning she likes to push buttons. Direct Selection - no kidding?! I looked around our house at all of Ellie's toys and noticed that they are all about pushing different buttons in different sequences to make stuff happen. She had been "declaring" herself, as Dynio used to say, for a very long time.

Eureka!!!

The specialist also observed that Ellie had memorized the buttons on her keyboard so that she could use them without looking at them. Ellie had memorized the keys so that she would not have to refocus her eyes from key board to screen because that is really hard for her due to her hypotonia. This also explains why asking her to scan images using a switch is going to be harder on Ellie than having her directly select what she wants via a keyboard. She will still have to do some scanning but providing her with choices that are laid out before her that she can use her thumbs to access make sense for her. That is what she has been doing her whole life!

#2. Strategy. We finally have a strategy that makes sense to me versus the "we'll see what she does" and try to force fit her into someone else's view of her regardless of who she is. It's really amazing how people don't allow themselves to see Ellie when she is right there in front of them. People have so many filters about what a kid in a wheelchair who drools can and can not do they forget to see them as they are.

This new strategy focuses on Ellie's strengths - the use of her thumbs, her curiosity about how things work and manipulating things via buttons. She navigated the Intellikeys easily. It was clear to me that Ellie has declared herself and her preferred communication but I needed the words to make sense of it. It's not that Ellie won't sign or use other forms, but I almost feel like she was doing those things to fit in / join in with what everyone one around her is doing. She loves to learn and she loves to sign, I don't want that to go away. But signing is hard - pushing buttons takes a lot less energy. And communication for her should be suited to her to make it easier - not harder. Switches are often the preferred device for kids without the fine motor ability that Ellie has. Ellie has great fine motor and shouldn't be limited to a two button switch where she has to rely on scanning with her eyes - which is what is hard for her.

#3. Equipment. Finally an answer on what equipment she needs now and some idea of where that will lead. Right now we are looking for a used Intellikeys as well as a programming language that I will write about later once I get the report from the specialists.

Relief. Direction. Sanity. At Last.

Don't you hate it when you know someone is wrong about your child but you can't argue why because you don't have the words?

Glasses, Development, No more Cisipride, and "I love you"

2009-02-12T23:03:00.004-05:00

It seems since graduate school, which I entered in 1997, life has been a constant game of catch up. There have been virtually NO moments, since 1997, when I have been on top of my to do list. This has got to be that middle life stuff I so despised in my parents. They were just all about work all the time and stressed out. I can remember completing a task that was the last task and I was done. My day was truly free. That was in 1996. I remember it was a sunny day in LA and I went for a run on the beach and then meandered to Trader Joe's and went to bed early. I can't even run any more due to my crappy knees.

Ugh.

Today I took Ellie, finally, to her optometrist. He's great. He's actually the head of Optometry for Children's Hospital Boston. He probably thinks I am an idiot though. I took her because for the last three months, Ellie has been throwing off her glasses. Whipping them off seconds after they go on. And as I understood it, she needs her glasses to help her eyes focus due to the CP. We were there from 10am until 12:15pm. Ellie patiently looked at cards and pointed to the little stripy boxes getting more and more obscure. She endured the drops that make your eyes dilate. At the end, Dr. Hunter told me that her vision has not changed and that the power of her lenses need not change either. It came down to three explanations:

1. the fit was too tight

2. her ability to focus has gotten better so she doesn't need them like she did

3. she's getting attitude.

On our way out we stopped to visit the guy who sells the frames and he gave her glasses a work up. Fixed the little flaps that sit on the top of her nose, widened the side bits so that they didn't sit as tight, tightened and glued down the screws that hold in the lenses. He was great and so patient. Ellie was really tired at this point but has not thrown off her glasses since. So it was the fit. Dah! Dave and Ellie and I all have glasses now but we are all new at this. I am glad it was just the fit and we will check that first next time. Does this mean her head grew ? I hope so.

Development.

Where are we? I don't know anymore. There is no marker no road map. She seems to be coming along. But lately I have had the misfortune of moms from that other world, where your kid comes out at 40 weeks and sits at x number of months and walks around a year, and eats and talks, etc. make comments to me about how surprising it is to have such adult like conversations with their six year old. They always, end these musings with a "ya know?" And I just say "mmm". Ah, NO I so don't know. But what can you say? It's great to see their evolving relationship the awe that comes with these comments. I don't want to spoil it for them by making it about something else. So I sort of just agree. "Ya, that's amazing." It is amazing, but in truth I have no idea what that is like.

Ellie, in my warped and tired brain, is finally, officially six. Her due date was Feb 4, so there is no clinging to five any more. She's six and not having adult-like conversations with me. And recently she has gone back to reading some of the books she did two or three years ago. What is up with that? I feel anxious about this and don't know how to make sense of it. I don't know other kids that closely to know. My sister's kid, who will be 6 in March is doing complex craft projects, using a microscope and wanting me to teach her oil painting.

There are benefits I can get through the Massachusetts Department of Mental Retardation. Yep they actually call it that. DMR. Nice huh. Progressive. But they give you money for stuff, like augmentative communication devises, etc. But to get those benefits you basically have to declare your kid is MR. MR. Mentally Retarded. Yep they still call it that.

I haven't been able to even call them. Several people have given me their number. I haven't done it. What is MR anyway? Is anyone really MR? I worked with juvenile delinquents who had IQs of 70 - which was considered MR. But what I found of them is that you can do a lot with that. And Ellie. Ellie, she used to be able to do things that kids her age couldn't, like know her alphabet at age 2 and all her colors and shapes. But now, those same kids are having "adult-like" conversations with their mothers and we are reading books from a few years ago.

I am not surprised. Not really. But seeing the gap widen - and it was probably always this wide or wider - just harder to see - is difficult. I am not in denial either. I want to see Ellie as she is. But what I don't want to do is label her something that fixes her in space and time and arrests her development. I think labels are THAT strong. I want to keep the bar high on her and keep hope and believe she will move forward at her pace and her time. I really don't want to label her anything. It's so final and I don't want others to label her either. I can sense a low bar being set for her miles away. The dismissal of possibilities stinks like a poppy diaper filling up a room. I can't stand for that. So it's not that I don't notice these differences, but I just can't live in them. They are only helpful in giving me ideas about things to do with Ellie to teach her about the world and maybe create a new neuro pathway via experience.

Today, after reading Jacqui's post, I showed Ellie what a letter was and where the stamp went. We will have to do that again to make it stick. I need to bring the world to her that a typical 6 year old could access though I am not sure of all that is. We recently started a ballet class that was inspired by Ellie. She looks really cute in her pink leotard and ballet shoes. Pictures soon to come. She has navigated that new setting beautifully and it's part of the bring the world to her paradigm.

Cisipride.

Ellie is still off it and none the worse. I have to say I have really noticed the difference. When I am in the market I can consider bringing home grapefruits without shuddering. I can give her herbal teas without wondering and worrying. And having one less med to give her four less times a day is a huge thing. Sometimes its the small things.

Another new thing she has been doing, spontaneously, versus being coaxed, is signing I love you. The sign for I love you is tough for Ellie. All the open handed signs are and in this one you have to keep your middle two fingers down and the other three up. It takes her about thirty seconds to make it using two hands. And that's a long time in communicating and when you are six. Yesterday, Ellie signed it to me when I was pumping gas and tapping on the window to amuse her while I did so. Moments like that sustain me. They really do. It was like since Ellie was born. It would be a look she would give me, or a nuzzle, or just a sense that she would emit into the ethers. The message is always, "It's going to be ok mama."

I am not sure what ok is going to look like, but I trust Ellie.

Time for Toilet Training

2009-02-09T08:42:00.003-05:00

I hate making equipment orders ever since a very junior PT in 2003 ordered a adaptive chair and a stander that were way too big for Ellie and having it take 6 months and lots of phone calls and waiting on hold to correct it, I am wary of making equipment orders. If you screw it up you are simply screwed. And it's Ellie who misses out. So I have been delaying ordering her a potty seat. And I know my delay has probably been as long as it would have taken to correct a bad order. Bad mama!

Ellie can't sit very well on her own so I need something that will hold her up while I help her clean up so she doesn't fall. I like the idea of a low to the ground stand alone seat because I remember sitting on the edge of the adult toilet as a 2 year old being petrified to fall off. Yes. I actually have many memories that far back. I also like the idea of her having her own separate seat from a germaphobe perspective. Lastly, I like the low to the ground seat because she can practice sitting down on it and standing up from it. An Ellie size seat might feel more fun like a toy versus any thing that is threatening.

Any suggestions? What has worked for your child in this matter?

Any thoughts you want to share will be MUCH appreciated! I need to get off the fence and get this going. It's time. Ellie's ready and I have to get ready too. Easier said than done. Not sure why I am dreading this but I am.

Ellie Meets Santa

2009-02-06T16:06:00.006-05:00

The order of the pictures is a bit off but the very last one is when Ellie first sat on Santa's lap. She met up with Santa at her school's holiday jubilee this December. She wasn't too sure about her dress until Dada saw her in it and said, "Oh Ellie, you must be one of Santa's helpers in that dress!" After which the dress was perfect!

She was in awe to say the least, when she finally got to meet Santa. After she had said her initial hello which consisted of her taking in Santa for a good thirty seconds. She immediately finger spelled S-A-N-T-A and Santa, being the awesome guy he is, knows sign language and was properly impressed and Ellie equally as delighted. You can see Ellie making an A and an N in one of the pics. You can also see her gluing decorations on a stocking and receiving a gift from Santa.

It was a great day. The best part of course being S-A-N-T-A!

Nightly Foot Soak and Sharing a Laugh with Mama

2009-01-22T17:32:00.003-05:00

Sunshine

2009-01-16T21:37:00.003-05:00

Will walk for Hugs

2009-01-13T20:05:00.008-05:00