So many fairy tales

December is time for fairy tales when different worlds briefly align.

We made it to Ireland, seizure free, with the prerequisite hassle that only seems worth it once you get here and see the faces of those you love emerging out of the beautiful Irish mist. Ellie is taking her usual 1pm nap on Dave in the living room by the light of her auntie's tree. And so we begin the slow transition to Irish time that includes being awake while others sleep. But this post is not about that. It's about fairy tales.

I read recently that Einstein said that if you want your kid to be creative, have them read fairy tales and read some more fairy tales.

When I was little my mom, a librarian and teacher, would bring me and my two sisters to the library a couple times a week. I loved our library. It was made of a yellow gold brick and was shaped a bit like a castle. The children's room was a huge circular room. And it had a book shelf that went around the wall and half way up with a bench right at the bottom and the top was lined with these huge arched windows. The ceiling was a high dome that reflected the light softly down onto the circular rug below. It was a beautiful room. A cathedral to the imagination. My sisters and I would take out stacks and stacks of books. In fact they created a book limit because of us. 21. That was how many books each of us could take out at one time. My mother was a wonder of organization to not have had to mortgage the house on late fees.

The other thing I loved about this library is that they had an unending supply of fairy tale books. There was a slew of them named after all the colors on the spectrum each filled with loads of tales, The Red Book of Fairy Tales, The Blue Book of Fairy Tales, The Golden Book of Fairy Tales, and so on. These books had no pictures, not even on the cover. I made my way through all the colors - probably over 50 or so each 2 inches thick. I loved them. Tales of princesses who discover secret underground worlds where they have to cross great watery underground lakes on boats propelled by swans to escape a horrible fate laid upon them by their father king. The ever present struggle for freedom and identity and love. All so romantic and colorful and alive in my mind to this day. Danger was there too, always. Elements of realism woven into beautiful tapestries that included trees made of crystal and fairies who flew on gossamer wings. I could feel the mist on my face of enchanted oceans and taste the dew of deep green forests and the coolness of wind on the gray stone of castle towers.

Today I got to watch a fairy tale, Stardust, on the plane. It was wonderful. I understand all the fuss. I have been working my way through the entire of the Harry Potter books because now that I know the ending it all looks different. Dave got me the Golden Compass trilogy for Christmas and I can't wait to dig in.

So what has this lifelong obsession with fairy tales done for me? Well besides leading to some great paintings of trees made of crystal they have allowed me to create my own world with a little more flare and creativity than if I had not read them. When I read them they put me in a different space. It reminds me that I am more than my present situation. More than my body and mind - that I have this essence that is just as beautiful as those enchanted worlds only a book could immerse me in. After that type of immersion I think differently. I see things, every day ordinary things differently. There seems to be more light in the air and more oxygen too. And I have answers to my problems and challenges I didn't have before the immersion into something that is other.

I believe we can create our world anew each day by making different choices and using our creativity to bring in more love to whatever situation we are in. It's not looking at the glass half full or half empty - it's more than that. It's literally working with the raw material of our world - the good the bad the difficult the wonderful and weaving a beautiful tapestry that tells our tale as best we can. Fairy tales have made me a better weaver. One who doesn't just see the limits and takes a certain relish in the aliveness that is found in the really tough challenges.

Ellie, with her love of all things imaginative including inanimate objects that suddenly do extraordinary things, caterpillars that turn into butterflies, and all things beautiful is her mother's daughter and a child of mist and fog.

What an amazing year it has been. (yes, another montage)

Photo and video editing at www.OneTrueMedia.com

Moving Through Honey

It's snowing here again but I can't complain because Winter held off its icy clutches long enough this year such that the Fall was so extended I actually yearned for snow. What the heck was I about?

Right now I am overwhelmed. I feel like I am moving through honey like every movement takes a 200 pounds of force to make it. Can you hear my voice in this post? If you could it would sound like a recording that is going too slow and my voice would have that deep hollow sound like they have in slow motion sequences in movies. That is me - moving through honey that is my life's minutia. Someone please tell me how to push the normal play button again. I have goals people! Things I would do if I had time. I have things I desperately need to accomplish for the health and wealth of my family and my own temporary self - vital things! But now all I am doing is moving through the slow viscosness of life. Trudging through snow and fighting through barrier after barrier. Nothing is a go it's all one big struggle. Ugh.

I won't do the list as I have done in the past - remember my call list here? Well this one is longer and time is ticking before we take our sweet warrior princess over seas. I am doing things differently this year because I don't want to end up in an Irish hospital again. An Irish hospital that would not release it's records on Ellie so that the travel insurance that we paid dearly for could not process the claim. The Irish hospital that in the ER could not get an IV in and saw no need for urgency. Not again. I have to admit I am feeling a bit edgy about this trip. I've no need to see the inside of any hospital ever, EVER again. These things are weighing heavily on my mind.

We are leaving for Ireland on Sunday and I haven't started packing and still have gifts to buy and Ellie has a cold and is running a low grade fever on and off. We have upped her seizure meds slightly after meeting with her new neuro. Long time we have waited for this meeting as I discussed here. He was ok. We were late because of the snow. He didn't have many answers. If I ever went into medicine I would never be a neurologist.

The other thing that is weighing on me is the question of how you thank, on a very limited budget, all the amazing people that make Ellie's life immeasurably better? Does a box of chocolates (even one from Ireland made from the milk of those limey soil calcium rich grass fed cows) really say thank you? Because I believe the precise more accurate thank you would be phrased like this,

"Thank you so much for making a wonderful life for us, especially for Ellie. My beautiful Ellie, who I thought there was no place for outside the home. For Ellie who is so bright but has some very particular needs that are very difficult and complex to understand never the less leverage for her growth and development. Ellie, whose head circumference as grown 3+ centimeters since she started your preschool and not from hydrocephalus. Ellie who now does not freak out at every loud sound and every new situation. Ellie who will look at any new book and who now loves to play the tambourine in a circle time that is sung at the top of everyones' lungs. The Ellie before could barely handle the whisper singing that you all so graciously offered up as a starting point. How can I say thank you for the fact that Ellie touched glue and put leaves on a paper place mat? How can I tell you that, that place mat is the most beautiful work of art and heart I have ever seen such that it made me weep to see it because I understood how it is pure evidence of how far she has come? How do you say thanks to people how stand by Ellie and have opened their hearts to build those vital relationships with her so that she will work hard for them? How do you say thank you to all these people that are fools for love enough to make monkey sounds and sing to her when singing is not their thing so that she can learn and grow and be happy in doing so?"

So you see, the small tokens I will get for these people, just don't really cut it in my mind. I wish I was a millionaire and could make up for the fact that I feel these masters of learning to be seriously underpaid. But for now the Irish calcium fed cow chocolates along with some other small gifts will have to do along with our HUGE undying gratitude!

So that is where we are at, one sticky ball of honey rolling down an icy hill towards D-day when we fly to Ireland for a lovely Christmas there hopefully seizure and hospital free.

Disability Blog Carnival #28: My Favorite Things

Over at Andrea's Buzzing About you can check out the latest Blog Carnival. It's excellent. Thanks so much to Andrea for organizing this so well!

The Mythology That Is Our Life

The mythology that is one’s life is something not to miss. I have been aware of mine since I was a very young child. I would see my life unfolding as an observer would at times. My life has its own flavor and rhythm to its events. It’s my life but it’s not me. I influence it and give it spice and specificity but it’s a fleeting thing whereas I am timeless and forever.

Because this life is so fleeting being aware of it has been critical to understanding it and savoring every precious drop no matter how bitter or sweet or savory.

Now that I am a mother the myth of my life includes this beautiful fairy child. Sometimes when my body and mind are very tired part of me wonders where my healthy child went to be replaced by this beautiful changeling. But I only think that when I am near exhaustion. Other times I see her sleeping alternatively wonder how she is so beautiful and where the back of her head went. Microcephaly is like that – not much back of the head.

It is in the wee hours in the morning when she peeps for a moment and I go in and check that she is breathing, not seizing, and not choking that I am hit with these competing impressions. I am the observer watching some rare site that I have also seen a million times. The dualism of it is only hard to explain to the mind but is perfect reality.

I think I also have a hand in creating my personal mythology. Like steering a bobsled down an icy slope I can lean left or right, brake or hunker down to go faster. I can decide to daily play themes of hope or despair. This I have always known. And this ability is independent of outer circumstances – that I have just started learning since Ellie was born. It’s good to learn because there is no room for victim-hood in it. Which is quite freeing. Being totally responsible for my life and actions and thoughts and feelings is a freedom I did not understand before Ellie came along.

Descartes believed the unexamined life is not worth living. I agree, which is no surprise to you who have been following my blog for some time.

I wonder often how Ellie experiences the mythology that is her life. Is she aware that she is a princess in a small kingdom called home? Does she know that she is the ruler of many hearts? Is she aware of her own sweetness and power and intelligence? I hope to help her see herself without limits despite her many, many challenges. I hope to help her live in the dual nature of being a ghost in a machine that functions a bit differently than many of the other machines out there. I hope to show her it is of no matter. That the business of life is for the living not for the dying and that it’s an inner choice you make to be happy not an outer one. No one can make that choice or unmake it for you no matter what they do. I hope to help her preserve what all children know just by being, that our basic elemental nature is to be happy beyond the travails of the body and mind.

Happiness is an art.

I wonder if it’s arrogant to think I need to or can influence any of that at all in Ellie.

I do know that Ellie is a wonder to me and adds a richness to my personal mythology that was not there before she was in my life. She has taught me more about being happy than anyone else but Dave. Dave, my sweet husband with the gentle and positive nature, who has recently been dubbed “MacBrawny” (after he inadvertently worked his tea and cappuccino making charms on an unsuspecting medical student). But that is what it’s like living with Ellie and Dave every day. They are both bright sparkling lights that are pretty happy most of the time.

With that in mind, happy holidays everyone!

Birthday Songs, Christmas presents and Uncle Eamonn

Ellie has been having a great month despite her continuously casted feet. She is sleeping better and I actually know why and am working on a nutritional post to discuss. But for now here are some pics of her latest adventures in 3BT Style:

1. Ellie's fourth fifth birthday party - the kid party at home. She had a blast. Two of her classmates and her neighborhood friends came. There was singing in circle which is her favorite, a caterpillar cake and lots of laughs. (*For all of you bakers out there - don't forget the crumb layer. You know what I mean. Why I think I can frost a cake as well as I can bake and sculpt them is beyond me. Because truly, I suck at frosting cakes! Look, his purple antenna fell off. Oh well.)

2. Ellie opens presents. That is one small sentence that represents oh so much. First - her sensory aversiveness to touching unfamiliar things is so much better that she actually enjoyed opening presents!! She was actually ripping off the wrappings with gusto. Once she got to the present she wasn't so interested but hey, gotta start somewhere. Christmas is here and this is one of its blessings not lost on me.

3. Uncle Eamonn rearranged his schedule to swing by Boston in order to see is first niece. It was a great visit as Uncle Eamonn always makes Ellie laugh. He looks a little rough in this picture from the long journey from Madrid.

I wish this old train would breakdown so I can take a nap!

Jack Johnson - Breakdown

This is one of my favorite songs by Jack Johnson. It's a good one to listen too when you haven't had a night of unbroken sleep for what seems like weeks. Sometimes I wish that life would just let me get off its mad rush and take a break. This is one of those times. These casts are killing us!

Ellie hasn't been sleeping well with them at all. She sleeps for about a 2 hour stretch at a time then is up and upset and unhappy and wanting to be held. And that is pretty much how our nights have been since October 30. As a result I am a lazy blogger. I have so much to tell you to - especially on the nutrition front.

Monday we get the first set of casts off only to have her molded for new AFO's and recasted until the new ones come in. It's the final stretch on our way to walk ready feet.

Happy Birthday Ellie, Love Mama

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Rosebud, sharing a laugh, Yaa! (3BT All About Ellie)

~ Rosebud cheek against my chest as she dreams. The safety she feels is palpable and forever endearing.

~ The way she HAS to turn and look at me while Dada "checks in with Santa". She wants to share the laugh.

~ The way her eyes light up and her small smile of anticipation when you have figured out what she wants to play next and hit upon one of her favorites. "Yaa!" she says in that sweet light voice only a little child's small vocal chords can create.

Happy 5th Birthday Ellie-Luv

Ellie turned 5 today. She was born at 3:01 PM PST. It was a rainy Saturday and she was three months early.

She had a great day today. She has come so amazingly FAR.

It truly doesn't feel like 5 years have gone by. It is going way too fast.

It's late. After a day of parties at her school and at home and a couple more to plan for, mama is tired.

Will add pics to this post and more descriptions tomorrow.

Home at last

We got home today just before 7pm. Ellie, other than being tired, hungry and having to put up with casts on both legs (up to her knees) is back to her old adorable, happy, smiley, active, smartie-pie self.

Thank you God!

And thanks to everyone for all their kind thoughts. I really think it makes all the difference.

Will write what I learned about Codeine tomorrow because I am tired and hungry too.

In Hospital - again

This is just a quick update while I am home gathering up Ellie's food and overnight gear for the hospital. Sensitive Boo had a bad reaction to the codeine. They gave her some Narcam and she popped right out of it for 30 minutes but then right back down again. She was satting really low. Turns out Codeine has a suppressive effect on the lungs and the Ellie is sensitive to it.

I can't tell you how bummed out we were that this has happened and how relieved we were when they successfully pulled her out of it with the Narcam.

They have ruled out shunt malfunction and seizures. They are keeping her in for observation at Children's until she is back to her baseline with out the help of Narcam.

Will update when we are home again some time tomorrow. Any good thoughts for Ellie will be much appreciated. She is in the wars, again I am sad to report.

Home and Happy - well mostly

Ellie really sailed through this one. We are home. She is playing and bright eyed with one red cast and one purple cast. She wants to play and is keeping down her food.

She is my brave warrior princess. The operation went well and I can't believe the position her feet are in. Now we just have to get through the casting and the pain management when the block wears off.

Thanks to all for your well wishes!

Added this bit 5 hours after being home:

Ellie got this epidural block just before the surgery that helped her be more comfortable during the surgery. Well...it's worn off and yikes she is in a good bit of pain. We did end up having to give her 1 cc of Valium for the spasms and Tylenol with codeine for the pain.

Poor little babe can not get comfortable. So it will be a long night staying ahead of her pain. The good news is the is still keeping her food down and at the moment is resting on Dada. Hopefully she will be able to rest. Any one with any tips on getting an active 4 year old to stay put with her feet up to keep the swelling down, please let me know. Because Ellie is not thrilled with this arrangement and her poor feet are really swollen. I knew it was too easy.

PERC Lenthening and Posterior Tibial Tendon Recession, Oh my.

Surgery.

I HATE that word especially when it applies to my baby. Ok - she's five, but she will always be my baby.

Here's the why of it that I hope one day Ellie will understand:

This is a regular scenario these days. Ellie is sitting on Dada's lap reading when she sits up straight, pushes the book away, and reaches out for her Pony. She literally put her hand around the handle and pet it! And smiled.

Dave said, "Oh, do you want to go in your Pony and do walking?!"

To which Ellie replied, "Squeal!" With a big smile and dystonic arms out head side to side.

I know that reaction is because of the CP - but it leaves you no doubt as to her positive enthusiasm that you have figured out what she wants.

So Dave, painstakingly puts on the right socks, then carefully but very firmly puts her in her AFO's and the little shoes that fit over them. She gets in her Pony and heads off to a visit to the bathroom. I must take a picture so you understand the draw. For one the shower curtain is covered in ducks - which she loves and also it's a small little room. I remember as a kid liking small spaces too. Maybe she is also trying to tell us she is interested in potty training! hmmmm - that just occurred to me- ok I am all on for that!

Anyway - she makes it there by moving her feet forward then pushing up. She even gets in a few one foot first then then the other proper steps in to Dave and my cheers. (You'd think the Red Sox won the world series again! Well they did so that was nice coverage for all the screaming). Ellie was able to get to the bathroom - which was about 10 feet from where she started. She had a look of wonder when she got there, had a good look around then a look of pain hit her face and she scrunched her arm over her right eye. This is her indicator that we need to get those darn AFO's off NOW please!

Dave took them off and massaged Ellie's feet that immediately went back to their equinovarious posture. It hurt her to be in those AFO's for the 10 minutes she was in them.

And you know what, I dare say if they didn't hurt her there are other small spaces in our house she would like to explore as well as pull all the toys out of the bins that being upright in the Pony allows her to access. But that's it for the day. We have to let those feet get back to their normal color.

So there it is. What would you do? She wants to walk and I want to help her.

In my last post about this Penny, rightly discussed the other dangers of not doing these things in her comments. Ellie's bones have not fused together yet - but should I let them? I think no. The exercises from Advance are helping her tremendously - but they are not helping her feet - yet - they reach the extremities last. Her hands have been helped but her worst area of high tone is in her ankles and feet. Also note that her hips used to be really bad and her wrists - but the hyperbaric treatments and the Scotson Technique have helped all of that.

So here is what we are doing.

It turns out that they guy in New Jersey is not the only one in the country doing PERC lengthening. This is the least invasive way to lengthen the Achilles tendon. It is laproscopic and will leave minimal scaring. In doing it the doctor will basically take small chunks out of Ellie's tendon to allow it to loosen and weaken. When ever you mess with any tendon in this way you weaken it for LIFE - it will never come back. This greatly concerned me so I asked him how much it would be weakened and he said if you could isolate the muscle and tendons in the lab you would see a decrease in strength by 5-10% but that it's very hard to measure in humans. Having gone through a similar operation - actually a far more invasive one - my tendons don't feel all that weak - so we will live with that risk for Ellie. I am so so thankful that this technology has come such a long way since I was 13.

The other thing we have to do which is more invasive is a post tibial tendon recession. This is the tendon that is pulling her toes in. The PERC will take care of the tendon (Achilles) that is pulling her heal up. The posterior tibial tendon recession requires a regular incision that will be about an inch long on the inside of ellie's ankles. I loathe that we are doing this optional surgery and that she will have scars and pain from it. This recession part is more invasive than the PERC.

While under Ellie will get casts on and wear those for 4 weeks and go back then, get molded for AFO's and be recasted until the AFO's are ready - approximately 2 weeks.

We will give her Tylenol with Codeine for the pain at home.

The surgery is at 10am tomorrow.

Today I am taking her to get one hour and fifteen minutes of Hyperbaric Oxygen therapy going down and staying at a depth of 24 feet. This will greatly support her blood oxygen saturation levels during the surgery. Then on Wednesday through Saturday I will get her this same treatment once a day. This should greatly induce tissue healing. 24 feet is optimal for tissue healing. Thanks to Linda Scotson at Advance for this advice on the level to go to. Dave and I knew we had to support Ellie through this with the HBOT therapy. But I did not know the protocol.

Also, I will be using some cleansing herbal teas for Ellie to support her system in processing the toxins her body will received from the anesthesia and pain meds and natural ones that will be produced due to the trauma of surgery. I know I will be giving her fresh carrot juice as part of this but not sure on the rest. I will be sure to let you know in my follow up post.

So there you have it. We are doing an elective surgery on my daughter. I am hoping it will buy us at least 4 years of stable feet in the neutral position they need to be for walking. I a hoping that in this position they will send better signals to the brain - because this is in no way a cure for the CP - which is why I loathe it. It's a management issue. Yes - I am managing my daughter's feet so she can walk - but only because she has made it clear to me she want's to.

From the razor's edge to your ears. Send us healing thoughts!

Things you can't say to my face

True story:

A mother is travelling to the hospital in an ambulance with her daughter, a cardiac patient, who also has CP and uses assistive technology to communicate. Her daughter has a fever of 102 and possibly pneumonia. The EMT, who is unable to get the IV in, suggests using a new method to access the girl’s system internally (despite another easily accessible point – the girl’s g-tube). The mother asks what it is. The EMT pulls out a drill like those you see from a hardware store and tells the mother it will help her easily access the girl’s bone marrow so that she can give the girl any needed medications. Mom, flatly refuses. The EMT in trying to convince mom says,

“We’ve tried this on lots of real people.”

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hmmmmmm........

Sitting Strong

Here is my superstar sitting barely supported, arms out dancing to a wiggles song. I am so proud of my warrior princess! Here Ellie is sitting cross-legged and dancing. Thanks to Kristin for this pic.

In other news the Little Miss walked into the bathroom all by herself in her Pony gait trainer and was very proud of the fact. (Why the bathroom? No idea except that it is a little room off the kitchen that is Fascinating - don't ya know?!)

We have decided to go with a PERC lengthening surgery on both feet as well as to release the side tendon that is making her foot toe in. When we look at her in her Pony and how much she loves it and how little time she gets in it because her feet are too twisted to stand her AFO's it seems the obvious thing to do.

A note on PERC lengthening - we found out that the guy who does them in New Jersey is not the only one and there are lots of docs out there who do. I was shocked when in discussing what to do Ellie's doc started to describe the PERC lengthening and I said, "Oh you do PERC lengthening?!"

Ellie's surgery is going to be on the 30th of October. I will describe it more later. But keep her in your most positive thoughts on that day.

Ashley Treatment Goes Abroad

Emma does a great job at summing up the horribleness of this. NPR also reported on this yesterday. Emma posts the UK article here. I totally agree with Emma's thoughts on this only to add that this is also a feminist issue. I feel strongly about this being the mother of a nonverbal girl with Cerebral Palsy. I had period pains too when I was young - really really bad ones. And you know what, I got a hot water bottle and Tylenol but was allowed to keep my uterus. I haven't heard of any growth attenuation "interventions" being performed on the boys (which would be equally awful). If this were not a feminist issue I think you would be hearing about that too as men are on average larger than women in terms of weight as an issue for the seemingly allmighty care-giver / management paradigm.

Part of me was also very saddened to see that doctors in the UK sanctioned this. I always think of the UK as being so far ahead in social issues. Maybe it's because they are a much older country than the US. Or maybe it's because when we go there we see people protesting in the streets not to irradiate their food and for more organics. People seem so conscious there. I am now disabused of this abberration. What were those doctors thinking? I hate the precedent this is setting. Is there no safe place for the nonverbal PERSON with Cerebral Palsy?

When did a person who can't speak for themselves suddenly become a nonperson whose organs are up for grabs? Didn't Hitler round up a good many disabled people and let his mad scientists perform experiments and eugenics / sterilization on them? How is this any different? Did no one read Dr. Zeus? " A person is a person, no matter how small" or no matter how different for crying out loud! Why isn't this a given people?!

It's an incredibly awful, misguided, misdirected answer to huge problem of lack of support, medical equipment, etc. for people with gross motor issues and their carers.

It's just so wrong. There has to be a better answer than this. What kind of world is this creating?

Slam me if you will. But have a think about how you would feel if you were trapped in a body and had someone make this decision for you.

Cracking Ellie's sleep code or The End of Nap!

OK - first off, I know she has brain damage and that people with brain damage can have a hard time regulating sleep.

That said, I think she is, dare I utter it....outgrowing her NAP!

Yikes! The sacred Nap with a capital N!

The Nap. A law unto itself allowing all mothers much needed down time. A traditional time to regroup and prepare for the next round of caring for small child 101. Time to recharge for round 2 by way of a sanctified cuppa sanity!

But, yes, it's true, it's not just a nasty rumor. They do, eventually, sooner or later or sooner, outgrow the nap, brain damage or no. And I think my warrior princess is making this developmental milestone with all the irony of that! Sitting, we missed it. Standing and walking, well we are about 4 years behind on those too. But the end of the Nap - right on schedule!

Still, I will gladly give up my cuppa sanity time in order to get that hour back at 3am. It's not a bad deal. And as all mothers of kids with a disability know, there is plenty to do, in terms of working with her. Yes, baby boot camp in full swing. With wonderful pieces of machinery around like the Pony gait trainer, the Creepster Crawler and the tried and true A-B-C foam mat - there is plenty to do, never mind our exercises from Advance which are in bad need of renewal.

So, it's the end of the Nap. End of the Nap. Did you hear that echo?

No, really, I'm OK with it. Really!

;-)

________________________________

Picture Description: Baby Ellie in February 2002 in the NICU "growers and feeders" crib at 3 months actual age, minus 2 days old adjusted age as her due date was Feb 4 and this pic was taken on Feb 2. She weighs about 3.5 pounds and is wearing a preemie onesie from Jannie and Jack. The bump on the top of her head is the reservoir, since removed, that they used to to ventricular taps to control the hydrocephalus. You can see her head is a bit swollen due to the intercranial pressure. See why she is a warrior princess?!

Ellie getting closer to sitting on her own

This picture was taken today by Kristen, Ellie's teacher. In it you can see Ellie's PT Mary Ann stretching her ankles. Ellie is not using her hands to keep her up and is getting very little support from the pillows behind her.

I have to say I am blown away. I kind of forgot about sitting. Not that I would not dearly love it if she could do this on her own as I want her to do everything on her own. But...well that milestone is way, way in the past and when Ellie is home we do a great deal of tummy and floor time and now we are focused on her Pony gait trainer. And Ellie never, and I mean never, wants to sit across from me or beside me - nope - she has to be right on my lap and no where else will do. Or as Ellie's Irish Nanny would say, I'd be under her. Gotta love that! Anyway, sitting got lost by the way side - at least in the GIANT to do list in my tired brain but was clearly not lost on Ellie's amazing team of teachers and therapist and teaching aids at her school.

This picture just caught me totally off guard.
Do you think she will sit?
Should I dare to dream?

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Go Ellie!
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This is such a nice surprise!
Where have I been?

P.S. For those of you who have weathered the drought - I hope you enjoy the pigtails - they are alive and well and as you can see - flying!

All things perfect have ceased to grow

Last Friday, Dave and I got the rare chance to go out - together. Being incredibly sleep deprived the options for our date dwindled down from mountain climbing, roller blading and hang gliding to - dinner and a movie. I chose, admittedly, a chick flick (that one about those women reading Jane Austin). Dave agreed because he owed me one for dragging me to "300". But when we got to the theater, though it was advertised on Yahoo it was not playing. So in a quick decision making moment we chose to see The Brave One with Jodi Foster.

Now, I am in no way shape or form recommending this movie. It's the kind of movie I used to go see before I almost died giving birth to Ellie. Before Ellie almost died during her traumatic birth and all the years of aftermath. No, now when I go to the movies I want to laugh or see a likeable bit of hokum, or be inspired. It was actually pretty odd that we found ourselves in this movie. We just kind of fell into it. It was pretty violent and Jodi Foster plays the part of being a tortured soul wonderfully by looking horrible to the point of creepy. The sexual scenes with their blip in blip out to incredible violence were just plain disturbing. But there was a message in it for me that made total sense and helped illuminate something I have been wrestling with.


~~~~~~~~~~~Spoiler Warning~~~~~~~~~~~~


To put this message into context I have to sum up the plot of the movie. Basically, Jodi Foster's character and the love of her life, her fiance', are brutally attacked in central park. He dies. She lives and wakes up after several weeks of being in a coma. Their dog is stolen by the attackers. In sum she lives through this incredibly difficult, awful experience where she sustains great pain and a huge personal loss. Then she gets herself a gun and becomes a vigil ante around NY City at night.

The message for me came toward the end when another character asks her about how she was coping with being a victim of a violent crime and losing the one she loves.

He asks her, "How do you come back from that."

She answers, "You don't."

That was the message for me. Lately I have been trying to retrace my steps. Regain the person I was before I lost my healthy daughter and hopes and dreams for a life that now is beyond my grasp.

She goes on to describe how who you were becomes a stranger to your new self. I get that. The old me is someone who couldn't fathom where I am now or how I live and think and feel.

The new self can feel like a stranger too at times. It can be discombobulating. It comes down to having to get to know the new self and be comfortable letting go of the old one in the wake of tragedy, hardship and loss. It's really the only way to survive and find solace. Because solace will come.

In Jodi Foster's character's case it comes in the form of annihilating her fears. In my case it has come with seeing Ellie blossom into such a beautiful child, being closer than ever to Dave and really understanding what matters in life in a way I didn't before. And in all that annihilating my own fears.

So I think there is no point in retracing steps to try and regain who I once was - because it's impossible. The circumstances for one won't allow it. I guess my retracing had allot to do with the fact that getting to know a stranger is difficult and scary sometimes. In my case, not as scary as Jodi Foster's character who seeks out her demons in the depths of New York City's long dark night. My demons are far more subtle - sometimes.

It's funny how wisdom comes to you exactly when you need it from the most unexpected places if you are brave enough to go there.

From the outside in

I have been thinking about people’s reactions to Ellie and our story and disability for awhile and wondering how to put this but…I am starting to see that in our case anyway, it looks worse than it is from the outside looking in.

I have said that to people and they don't believe me. And I can’t speak for anyone but myself.

But more often then not when people hear our story and all its gory details or look at our situation they sometimes say and I am sure often think, “Thank god I am not them!” Or “That’s horrible!” I know this because I have thought these things when I have been seen other kids with disabilities different or more severe than Ellie's. So I am just as guilty as the next person for doing this. Lately, however, I am learning not to judge things I don't truly know about or have the intimate experience with to really understand.

I can honestly and easily say, I would not wish prematurity or brain damage on my worst enemy. There is nothing glamorous or funny about it for all you fakers out there(so much in that last statement for another post!). This has absolutely been the most difficult thing I have ever had to live through in this life. And if you really knew me, which most of you don’t, you would know that, that is saying allot.

However, I do wish to make a distinction about my life today, our life as a family as it is these days looking from the inside out.

I have had people say off color things to me recently like my PT for instance. I told him how great a Dad Dave was with Ellie and I said, “Ellie’s a lucky girl to have such a great Dad.” And his reply was to scoff. He literally made a tut sort of sound and said, “Well, she doesn’t have that much luck.”

Then the other day while I was doing strength building he was obviously thinking of my situation again and he said, “It’s so ironic that a mother and a daughter would both get club feet but from such different causes.” He said it so lightly, breezily as he was kicking a soccer ball around waiting for me to finish the exercise.

Please note that I like this person. He is an excellent PT, a good person, he seems to care about his patients and is generally kind. He asks about how Ellie is doing every time I see him. He used to work in early intervention. He is not yet a parent but he is of an age and in a certain amount of time in his marriage that he might be thinking about having kids. He also might feel a little overwhelmed when his natural inclination would be to put himself in my shoes. Because he is an empathetic person though at times he says things that are tactless as I have mentioned.

He is a good example of how from the outside people see that Ellie is different. They see me lugging her around, her not walking, her drooling, her head control not being 100%, her wondering eye, her vocalizations, her dystonic movements. They see that she goes to a different school. They don’t see us at the park much or running around on the street (well not yet – wait till next summer when Ellie is up to speed in her Pony walker!). People see the ambulance rushing us off to hospital. They see our house dark at other times during hospital stays. They see us feeding her through a g-tube and giving her medications.

From my perspective I have a totally different view. A dual perspective if you will because I am aware of all I have described above. Mainly, though, I see something else every waking moment of my life with my husband and daughter.

It is the inside view.

I see this beautiful little girl, with skin that is the color of my bolero blush roses, green-eyed and blondie curls who seems to soak up the sun and emanate it from within no matter what the lighting. I see her cheeky grin and find myself striving to make her laugh just to see her smile and hear her giggle which is the cutest thing I have ever heard. I see a person who opens my heart the instant I even think about her.

From the inside I have a daughter who needs me, who challenges me, who I have to make do things she doesn’t want to do like brush her teeth and tummy time.

From the inside I am a mom who worries about her child (just like all good mothers do). From the inside we are a very happy family: Dave, Ellie and I. We enjoy each other’s company so very much. I look forward to when I get to be with both of them. I look forward to when I pick Ellie up at school each day just to get to be around her. I look forward to helping her overcome her challenges and accomplish what she will - like any mother. I can imagine life without her. I have been forced to do that when she was on the edge. When I do that I honestly can’t imagine how I could go on without her.

So, I am not making lemonade out of lemons or anything stupid like that. To say that is to dimish my life and overlook the enormity of this experience, the wonder that is my life. I am also not in denial. If you read my blog you have heard me be quite honest about lack of sleep and having to make so many phone calls and fight so many battles.

I AM fully immersed in my life which, with all it’s challenges, is pretty good and particularly so for Ellie’s presence in it.

So from the outside you might see what appears different or even lacking. But that is all an illusion. Yes we are different. But no, there is nothing lacking here.

Our normal is perfect in my eyes.

___________________________________________

Picture descriptions from top down:

1. Last Sunday, Ellie at a fairy party laying on a big stuffed dog in a fairy tent stretching her wings.

2.Ellie and Mama at the same event reading a book in the fairy tent. Thanks to Haley for a rare pic of me and Ellie!

Ellie is growing up

This is a picture of Ellie in a corner-sitter at school.

No straps.

No hands holding her round the middle.

Just her.

Sitting.

Only supported by the chair itself.

Looking very grown up.

In the past 5 months she has gained 6 pounds, 2.5 centimeters in head circumference, 2 inches in length, and vocalizations that are starting to consistently sound like words. She is recognizing that signs take place not only at the chin but on the head, face, chest and arms. She is doing her best to sign back - all the time. She started school as if she had never left it - never missing a beat. Thrilled to be there every minute. She is working with an eight year old student to help her learn to use a qwerty letter board which is pre-voice output training and she is pacing with this kid wonderfully.

Awhile back when Ellie was really sick and not making any of those pesky milestones I was completely freaked out thinking that she might be in the baby phase - forever. It was a really scary time. Then she started to smile and express herself ever so slightly. Then she gave me her first nuzzle which is an Ellie hug. Then she started to make sounds and let us know what she needed. Today she is so purposeful and funny and smart. She makes me laugh all the time.

Yesterday morning upon waking she wanted me to do the 5 Little Ducklings Song - which I did. As soon as it was done she turned her head and pointed - yes pointed with her index finger extended (ok - only a parent of a cp kid will get how wonderful that is - but trust me - use of the index finger is critical) toward the door and said Ou! Indicating to us -that is was time - TIME PEOPLE! to start the day. Now.

My little girl has moxy. My little tiny preemie baby is no longer. She's a little girl. Who sits and points and has a mind of her own. It's funny. I never thought I would, but a part of me misses little baby Ellie. I guess that is the thing about being a mother. You take joy in your child at every age at the very same time as you know that with all their glorious changes they are moving away forever into their own independent world.

Edit: I just found out from Ellie's teacher that there is actually one strap around Ellie's waste because the seat is so shallow. But that is still so great if you consider that normally she wears full on shoulder straps as well. Her trunk support has just gotten so much better.

Should Doctor’s give Patient’s Notice?

This has been a rough week in many ways.

We are pretty sure Ellie’s identity has been stolen, which is just a huge stinking hassle to fix and one more thing we have to track closely for the rest of eternity.

Oh, yeah, did I mention she hasn’t slept through the night since mid-July?

Mid July!

Yes – up every night for 90 minutes to 2 hours. I am a little on the stressed out side by this. However, this is not yet another post about those bastards – the Goods of Sleep Through the Night – who clearly hate me.

No.

This is about a continuity crisis I am having with Ellie’s medical team.

Ellie’s Neurologist, whom we adore, who is excellent in every way from bedside manner to expertise especially since she specializes in hypoxic-ischemic brain injury and PVL, dumped Ellie as a patient on Wednesday.

We had our usual good visit: me with my list of questions, her with her thoughtful answers. She looked Ellie over after she was weighed and had her height and head circumference measured (44.3 cm’s there – the most growth she has had in ages and not due to hydrocephalus). And then she asked me if I had any more questions. I said no, that about does it.

Then she said, I have something I want to talk to you about.

Ok, I said.

I can’t be Ellie’s doctor anymore.

Oh no! Why?

Well, my clinic specializes in newborns up to age three and they have been cracking down on me. I would have done it before but didn’t because of the seizures (they surfaced May of 2006).

So the conversation went. She gave me the name of another doctor, sort of new to the hospital. I thanked her very much for being so great and told her I would miss her. I kept getting the vision in my head of our very first visit with her when we had just moved here and Ellie was a tiny little 13 pound 11 month old. She took Ellie right out of my arms and carried and weighed her, herself.

She said to send her a Christmas card. I said I would. She gave Ellie a little velvet flower with a smiley face and attempted to get Ellie’s attention to say good-bye to her but Ellie wouldn’t look at her. I wondered if she knew or was just tired of sitting and wanted to get to school. She went to shake my hand but I gave her a hug, which she returned and thanked her again trying not to lose it.

And we left.

I was in total shock. It was just like a break up. I started wondering what I had done wrong. Was I a pain in the ass parent to deal with? Why Ellie? Was she dumping all her other aged over three-ers too? What had I done wrong? Am I am horrible person? Will anyone love me? (just kidding about those last two)

She had every right to do it. I probably knew when she first took Ellie on that she could only see her until she was three. I also forgot that completely. She’s a great doctor and I am so thankful for all she did for us. I felt really safe with her on the team. I found out later from Ellie's pediatrician that she had just received some gazillion dollar grant to do more neonatal research so she has to free up her time. That was helpful in answering the, is this personal question. Which it wasn't (and it hardly ever is - that's just where I go - luckily somewhat lightly these days - most of the time anyway - but that is fodder for another post).

The scary part is that I called the doctor she recommended to take over Ellie’s care, but he can’t see her until January 2008. So my kid, with the three shunts, seizures, PVL, and cerebral palsy doesn’t have a neurologist on board for 4 plus months?

No way.

I have been freaking out about this since Wednesday. I spent all of Thursday and Friday calling doctors offices, writing them emails and faxing them letters to ask if they could see Ellie in less than 4 months time. I got some other recommendations from Ellie’s pediatrician but they can’t see Ellie for almost a year – all three of them!

Geez! I am sorry to report that the brain injury - CP business is booming in Boston.

It did dawn on me today that Ellie’s pediatrician, who still works with Ellie’s neuro…, er, I mean former neurologist or Ex – neurologist, can hopefully follow up on the scripts I was supposed to walk out with from that last visit where it was decided to change Ellie’s seizure medication dosages, but totally forgot, being completely flabbergasted and in a daze. I did call Ex-neuro’s office about those but totally felt like a stalker even though I explained that I was just following up on what was decided in that last visit. I haven’t received a call back… So I will have to call again, feeling even more un-entitled and pesky.

Which totally sucks.

Ellie not having a neurologist on her medical team is like trying to sail a ship without a rudder: scary and unfathomable.

Maybe Doctors, if they are dumping patients with a chronic condition, should give them notice – like say until they are able to line up another doctor to cover them?

What do you think?

Ellie at Drumlin Farm

Ellie really enjoyed her short visit there this weekend.

Picture descriptions from top left to right:

She thought the little chicks were really cute.

The next two pics are her discussing them with Dada.

She laughed at the fancy chickens after a long stare at their bizarre head plumage. She enjoyed reading the signs and discussing what they said about the animals.

Stem Cell Therapy: to do it or not to do it?

It seems like people get on either side of this issue and stay there - like it's black and white. From my perspective, as a mother of a person who potentially has much to gain from stem cell therapy and an intelligent person, I can tell you there is nothing self evident about it. It's not a no-brainer to do it or not to do it. I have been criticized for not raising funds to take Ellie to China and get the treatment straight away. And on the other hand I was told I was nuts to even be considering it in any time under 30 years.

I was asked by Katy to provide some information on stem cell therapy and that is what has prompted this post. I wish it were the magic bullet any parent of a disabled child is looking for. Some surefire way to take away the disability, pain and uncertainty. I am pretty sure though that there are no such magic bullets in life but rather only experiences that deserve paying attention to in order to learn and become better than we are.

That said, we have been standing in the wings waiting for a significant breakthrough on the stem cell front where Ellie is concerned. It strikes us that within Ellie's lifetime current techniques will be further refined such that the improvements will be far greater than the 25% that seems to be a common number in the blogs of those undergoing the treatment.

The big question is how long it will take for medicine to get to this point? Our biggest concern is that the long term affects are not really known. It's comforting to see that a US study shows that the umbilical cells appear to be safe and have no known side effects ... but at the same time our instincts say wait a little longer and track some of the existing patients and see how they get on.

Here in the US, it seems as though the public mood is behind stem cells/against the current administration and many states have big research budgets & programs underway so I'm hopeful we will start to see some breakthroughs in the next few years. The problem is, stem cell treatments will likely be highly regulated by the FDA and it will take even longer for the treatments to hit the mainstream in the US than in other countries.

We spoke with Radar in Malibu CA/Bahamas and also Dr. Steenblock who does the umbilical transplants in Mexico. We came away with the same impression that they were both somewhat fly by night operations and didn't fully trust them. Also neither seemed to publicly track patients post-op as chinastemcells seem to be doing. China seems to be quite far ahead and they are using umbilical cord cells.

Below are a list of blogs that we have been following.
http://stemcellchina.com
http://stemcell.taragana.net/ this blog is great for tracking stem cell news reports
http://www.stemcellschina.com/blogs/Kendra/
http://blog.brookebarels.com/
http://www.stemcellschina.com/blogs/Gabor%20cp/
http://kimpoor.blogspot.com/
http://www.stemcellschina.com/blogs/Maya/
http://lukasnguyen.blogspot.com/

Dave found this clinic in Germany. They are not using cord blood but adult stem cells from bone marrow. XCell Center - Regenerative Medicine
http://www.xcell-center.de/index.php?id=&L=1

Beike Bio-tech and stem cell processing at
http://www.beikebiotech.com/index.php?option=com_frontpage&Itemid=1

So what do you think? Is it safe? Does the benefit, at this point outweigh the risk?

Any research studies or blogs or websites that any of you lovely readers out there would like to share on this topic will be greatly appreciated.

A New Way to See

Finally, after much go around and come back again, I procured Ellie's first pair of glasses this weekend. They are purple and have stars on the edges and have a case shaped like a little plastic purple handbag with the word "princess" written on it in cursive little diamontes.

I put them on her and she scrunched up her nose. I am sure -that sensation of glasses on your nose for the first time ever is a bit strange. She kept scrunching her nose and the thing tickling it wouldn't come off.

At this point, as you can see here, she almost started to cry. But Dave and I, wanting to avoid this, piped up and said, "Ellie, you look so beautiful! These will help you see better!"

She thought about this for a minute and then, in classic warrior princess style, decided they weren't so bad.

Isn't that what it's like when you encounter something new and different? Even if that something is a fix to a problem or a disability. Once you understand that life is still life, that you are still loved and beautiful. It's not so bad. It's just a new way to see.

All About Ellie

Picture description: Dave and Ellie making the most of the bad weather we encountered on our brief vacation.

It's been busy.

Now that I am off the crutches and possess an internal clock set to the school year cycles I have been making up for lost time. As a result, getting loads done but not blogging. So this post goes out to Lisa and all of you who are missing my warrior princess. Apologies to all when I said I would post a picture of her every day. Once again Dooce shows me how it's harder than it looks.

It's been all doctors appointments and therapy and paperwork getting Ellie into school. So today, just pictures with short descriptions. More thorough update this week. Thanks to everyone for your input on alternative therapies - especially the anonymous reader who actually gave me a contact name and number after much travail to get it. I will be calling them this week.

Picture description: The giving tree - probably over 250 years old in Old Saybrook, CT

Picture description: We got to the beach a good few times this year. Ellie LOVES the waves and her tent as does every other little 4 year old around. Very cute.

Picture description: Dave and Ellie apple picking

Picture description:
Ellie greeting Mary Ann, her PT, on the first day of her first full year of school. Very exciting! And she did very well.

the 21st Disability Blog Carnival is UP!

Move Over Letterman, there's a new David in town.

David has posted the latest Disability Blog Carnival comprised of many top 10 lists. It's a great idea for a carnival and David has done a GREAT job of organizing it.

I have to go now - lots of thought provoking, funny, deep top 10 lists to read. Enjoy!

Happiness of Disabled Kids V. Peers

In light of my last rant if you are wondering if a disabled kid can be as happy as a non disabled one check out this UK study here. Thanks to David for posting about this here. Turns out that all that energy spent pitying the disabled would be much better spent on ensuring equal rights for them instead. Go figure.

Also, Jacqui, one of my all time favorite bloggers, has conducted and written an excellent interview with a very successful woman who has cp and is nonverbal. You can read it here. Thanks to Jacqui for this great interview and introducing me to Glenda Watson Hyatt, blogger and auther of the book, I'll Do It Myself!

Working Life Time and August Adventures

Sometimes, probably more than I would like to hear, people say of me and to me, "You have a hard life." I have to admit that part of me hates that - the part that hates anything with the hint of pity. And part of me agrees - life is hard and sometimes mine is too. However, overall, I really truly don't think it's a good thing to judge someone else's life time. For us, we have a lot of things we do that are different than the norm. Ok, what of it?

I contemplate on a regular basis. I would describe these contemplations as little 15 to 30 minute conversations with God about my life and life in general. In one of my most recent contemplations I heard the message quite clearly, "Don't begrudge others of their 'rest life times'."

This was a good reminder for me on a day when I was feeling overwhelmed and a bit resentful of why things seemed so hard for me but easy for others - it all seemed unfair. What this meant to me, is that some times you reincarnate and have a life where you learn ALLOT very quickly. Like a really jam packed, comedy and tradgedy, on the edge of your seat thriller movie. I would call these working life times.

And other life times it's more restful. Things unfold more slowly. There is not as much hardship and things are relatively pleasant and easy. I have had those lifetimes. And I think this life of mine is not one of them. It was quite difficult before Ellie was born. I am seeing a common thread when I look at it on the whole. So be it. It's a gift from God - all of these experiences.


But when you look at my life and say, "wow that's so hard", just remember you have had many working life times (if you believe in reincarnation - if you don't no worries) and will have more. So I won't begrudge you your resting lifetime - but don't begrudge me my working life time. I am learning a great deal and there is about a million tons of love thrown in there to keep me going. So, I'm good and no less successful or important or viable or credible or competent or deserving than you. Thanks.

Ok - so that's my little rant.

Here are pictures of Ellie's first time in the Creepster Crawler. She did AMAZING. She didn't cry. She didn't ask to come out. She played with her toy phone and explored a strip of abc mat. Thanks to Jessica and Diana for helping me learn how to get her in it and use it.















The other pictures are just potraits of my 4 and a half year old darling.












And the very last picture if of me and my oldest and dearest friends. We all went to college together so our friendships are going on 20 plus years. I am so lucky to be back on the East Coast so I can hang with them. This was at our July birthday celebration - yesterday. I would never say we do things by the book.