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Tuesday, October 30, 2007

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.'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.

Monday, October 29, 2007

PERC Lenthening and Posterior Tibial Tendon Recession, Oh my.


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!

Sunday, October 28, 2007

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.”



Monday, October 22, 2007

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.

Monday, October 08, 2007

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.

Sunday, October 07, 2007

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?!

Friday, October 05, 2007

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?

Go Ellie!

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.