Casting for hope: Parts 3 & 4

Part 3: BiValves and Ankle Foot Orthodic (AFO) Molds

On November 20th we got Ellie’s 3rd set of casts taken off. This set kept her feet just a few degrees shy of neutral for one week and were her most comfortable set. These were removed with the dreaded saw and made into Bivalves. Bivalves are casts that have been made into a brace that can be taken on and off. About half of the padding/gauze that existed in the cast is taken out and replaced with a cotton lining and straps on the outside to hold them on. They were wildly uncomfortable for Ellie and we had to give her feet a break the second night because her poor feet were swollen and bruised. The next morning it was like she had new feet they were so improved. After those first couple of bad nights she settled into these with a little added padding we added. They are a stop gap measure and because there is some play in them we were not able to practice standing.

After they decasted her, Tom, the expert orthodics guy, created molds of her feet and legs our of plaster paris. Ellie sailed through this and was easily distracted by reading her books. Dr. Webster was his ever attentative self and was very pleased with the progress made with Ellie’s feet. And I have to agree – it’s amazing the difference. She went from having severely clubbed feet to being able to get them into a neutral position in under two months time.

She also has picked up the new skill along the way of being able to turn the handle of her “Raggedy Ann” jack in the box. This indicates a neurological leap, believe it or not. The ability to turn a handle round and round takes a new level of neurological complexity. Yay for all milestones! I am not sure if being upright, even if infrequently, had anything to do with it. But I can’t help think that having a new perspective will help her development.



Casting Part 4: AFOs

Today we went back to the Floating hospital to pick up Ellie’s AFOs. Her feet are still much improved after having worn the bivalves for the better part of 23 hours per day for one week. We were there for four hours because they had to tweak them when Ellie’s feet would show signs of pressure. They also tweaked her bivalves to make them more comfortable for her.

The Plan

1. Break them in slowly. The plastic of the AFO’s is way less forgiving than the casts or bivalves. Because they can be taken off they are intended to be more corrective. The casting was serial because you can’t take them off so they can’t stretch the child’s foot too much because of the pain. But AFO’s are intended to put Ellie’s feet in neutral so that she can stand in them. By standing on them the hope is that they will correct even further. You can see by this picture when she was a couple of months old corrected age, -1 month actual age, that her feet were perfect when she was born but have been pulled out of place by her spasticity as I explained here.

To break these in slowly we will start her on 30 minutes on and then take them off and make sure there is no redness. We will do this twice the first day and then 4 times the next. After that we will see how she does after one hour then the next day after two hours and so on. In between she will wear the bivalves.

The goal is to have her in her AFOs all day and let her sleep in the bivalves because they are made of cotton and can breath.

2. Gait Training. We will be getting Ellie a gait trainer which is a metal frame with straps that will hold her upright and bear her weight but allow her to get from place to place by using her legs and feet.

3. Dr. Webster was very clear that Ellie needed a power wheelchair. This is exciting news in that we were not sure she could operate one. He thin sliced that she could and felt that being able to explore her world of her own volition would create better feedback loops and help her brian develop.

4. Getting her a soft spinal orthosis to help support her spine is also being considered when we get to the point when she is standing.

5. Knee immobilizers. You can see them here – they are the gray things with the black strips. We need to put those on her when she sleeps to protect her knees. Her knees and the alignment of her legs have been a huge concern for me in this whole process. I have not been successful in teaching Ellie the idea of pain – so she can’t tell me when she is in pain other than to cry and be out of sorts. But she can’t tell me where the pain is – which is very troublesome since we have entered into the business of tweaking her body.

The Conundrum: A Paradigm Clash

The logic that is worrying me is the paradigm I subscribe too that says that Ellie’s body and the shape of her feet are in balance with where her body is. If we put her in positions her body is not ready for it could be injured permanently leading to more medical interventions. I have seen this born out with getting the g-tube and the huge increase in reflux that caused. It is true that if you sit someone in a sitting position who is not strong enough to hold themselves up their spine will curve. This started to happen to Ellie but then I made sure that everyone put her on her tummy as much as possible and guess what, her spine straighten out. I have heard horror stories and seen a couple of kids with CP who have had metal rods put up their spines for this very reason. These rods subject them to a lifetime of pain and a shorter life as well. But they are sure easier to manage for the caregiver.

The Other Paradigm: Management Paradigm

The management of these kids for the caregiver is the impetus behind many medical interventions we found. It is not about healing them – it’s about making them easier to deal with for their caregivers. This horrified me when I first realized it. I am all about Ellie healing. That is why I do the nutritional, Oxygen and Neuro-respiratory Therapies. It’s why I assume she knows more than less. I want to create an atmosphere, physical, emotional, and spiritual environment in our lives in which she can live up to her highest potential.

I started this whole botox casting journey because I felt that if I let the spasticity pull her once perfectly straight feet into permanent deformity that would close the door forever on her walking. Ellie wearing braces will allow me to put her in a gait trainer and a stander. But if she is in them too much her feet will get weaker. Wearing the casts have already weakened her feet – though strengthen her thigh muscles. This weakening of the muscles due to leg and feet braces or AFOs was confirmed for me by a mother whose child with CP is a lot older than Ellie and can speak. She told her mother that her feet are weaker if she always wears the braces all the time. Thank God today I saw Dr. Webster put Ellie on her own feet, sans braces, to see how she would do.

The Go-Forward Challenge
Balancing between the two paradigms so that Ellie bearing weight can help correct her feet even more without curving her spine or distorting the straightness of her leg and wrecking her knees. A balance will have to be found between the “skeletal” like support AFOs will give her with the weakening of her muscles.

How will we do this? I am not totally sure but right now I know that I need to keep doing a lot of tummy time with her. I will have to see how much time she can spend with her feet free. I am not sure. I do know that Ellie is still going to be spending most of her time on the floor, rolling, side lying and on her tummy. That is her gym and the key to her getting stronger. I am not going to have her strapped into metal equipment all day. I just want to give her feet time while waiting for her healing circulatory system and brain to catch up. If you have any suggestions, please share them here. I am all ears.

Master of the short post

I have decided that I must master the short post. My inspirations are posts like this and this from these famous bloghers, her and her, respectively. Successful short posts create a lasting impression. The most ingenious ones get me thinking during the day because they taught me something. Great writing happens when you can pen just a few words and get your readers’ minds spinning. This is my goal, to be the Master Of The Short Post (MOTSP) so that the two people who read this blog regularly can have more free time to get away from the computer and get some fresh air! See, I really do care.

Alas, I have two long posts ahead of me regarding Ellie’s latest adventures in casting and nutrition for the brain damaged child. With my MOTSP goal in mind, efficiency of language will guide. Right now I am tired because MI III sucked us in last night and kept us going until after midnight…. Is it only me, or did the lead woman remind you of Katie too? Somehow after way too much exposure to Tom’s personal life, dreams, philosophy, religion, views on psychiatry, and bizarre personality I couldn’t quite separate all that from his character. Sigh. Lesson Learned: I won’t ask and spare me the details about your life because I may not like your movies anymore, as much as I want to like them and you…

Lastly, today is the last day of NaBloBigMo. BloBigMo has been an interesting experience to say the least. If you are an aspiring novelist I highly recommend NaNoWriMo. I will not be one of the WriMo winners as I fell short of the 50k. I did learn a lot about writing and became very clear on all I do NOT know about structuring a novel. I want to learn more about that. If anyone knows of any great books or resources let me know. As my insanity seems a permanent life long condition, I may even attempt it again next year.

End. Radio. Silence.

Hello out there after a little posting break. A break that did not really feel like a break and was not intended to be a break per se. Per se – that is a funny word – no? It’s from the Latin and means intrinsic. You can look it up here. Sometimes I use words completely appropriately with no consciousness regarding what they really mean. They just sound right and work for what I intend to communicate. Does that ever happen to you or am I just some freak of nature? Though if you answer yes to both you would not be the first…

Anyway back to the point. The unintended part is simply because we have been balls to the wall dealing with a ton of tedious yet critical things to do since we got home from our Thanksgiving trip. It’s my karma for getting pissed off at the lame ass mothers ignoring their kids whilst shopping. As you can see I have learned nothing.

It’s great getting away from home and the enormous TO DO list that shouts through the ethers at me there. Our latest get-away was to the country to spend Thanksgiving with friends. All emotional yucky family quagmire completely sidestepped in favor of the sweetness and light of hanging out with old friends, at least from my perspective. I don’t think that was how Ellie felt.

My dear friends, whom I have not celebrated the holiday with since the birth of their first child eight years ago, now have three children. They are all great kids and all really sweet with Ellie. There were a lot of people around us for the couple of days we were there and from Ellie’s perspective a lot of competition for Mama’s attention. She kept a trained eye on her toys and the other kids especially when they were interacting with Mama. She also started vocalizing way more than she ever has at home with me. I think the picture speaks a thousand words. Notice how her mouth is open and she is working hard to be heard over the person who had the audacity to speak to her Mama.

I have noticed she “talks” more to Dave than me. I think it’s because up until this weekend, I had her body language and many of the sounds she makes worked out. To others watching Ellie and my interactions it probably looks like I am a bit psychic the way I know what she wants just by looking at her. Being trained to watch the body language of executives in order to keep strategic planning sessions on track, makes understanding Ellie's body language easy. Let's face it, her hidden agendas are way more genuine. Though, I must say her needs are becoming increasingly complex. Lately she will often reach for the pen of her Magna Doodle and put it in my hand and want me to write what she wants. I think Ellie might think I am psychic, just like many kids think their parents are omnipresent and omniscient. I think I will not so easily dispel this notion for her as it could come in handy in the teen years.

With all the festivities and visitors at my friend’s the environment was filled with the cheerful sounds of laughter and talking and cooking. To get heard above what she may have experieinced as a bit of a din, Ellie quadrupled the volume and quantity of her vocalizations after just a few hours of being there. It was great in the sense that she was expressing herself. One of her weakest areas is in expressive language and it’s probably partially my fault because of the pseudo psychic thing I mentioned above. During the Thanksgiving meal, however, she was vocalizing more and more and insisting on being heard. I wonder if she was around other kids more often if she would be speaking. Many of these new and loud vocalizations sounded suspiciously like whining and were putting my overloaded host over the edge to the point where he had to take a nap. I felt kind of bad about that, though he was really gracious about it and assured me it was not because of Ellie's new found voice.

What I really felt bad about was the fact that I didn’t know what the heck she was saying. At least she was vocalizing about lots of something loudly. All mothers of preemies can appreciate the lung capacity she has gained in order to do this. I attribute that to the many thousands of hours we have spent doing the Scotson Technique Neuro Respiratory Therapy with her. At Advance they never tell you about any side effects – which this new loud vocalizing seems to be. When Ellie was in the NICU and surviving day after miraculous day we used to say, “Give us your worst!” I think she is holding us to that.

I try to be careful not to reprimand her for whining when she might not be. I am reminded of our friend Francesca and her mother. Francesca has CP and is a couple of years older than Ellie. She has made amazing progress. Her mother said to her one day, “Francesca, stop whining!” Francesca replied, “Mommy, I wasn’t whining, I was singing.” How bad did her mother feel?! Yikes. Is that what it’s like for Ellie?

I think about that all the time when Ellie is vocalizing. I take each utterance as a communication though sometimes I do lose it and say, "Ellie enough!" That does get her attention and gives me just about 10 seconds down time. I don't do it too often though for fear that I will send her the wrong message. I want her to know I support her attempts to talk and communicate - Express Away! I have noticed when I answer her correctly she gets really excited and when I try to converse with her she gets more susinct in her attempts to talk.

I imagine that being mute is incredibly isolating. People make assumptions all the time about Ellie because she can't speak. They think she is stupid or talk over her and ignore her. Right from the beginning even when she was unconscious we would tell her what was happening to her and try to explain. We consciously decided to take it for granted that she was in there and conscious and on some important level needed and wanted to know what the heck was going on around her that she had no control over. If you are mute, it's very difficult to get control. Even with this attitude at times I have to consciously remind myself that she is not just babbling or whining but trying to make sense to me. Where do typical whining episodes of a small child fit in to that? I yiyiyi

It's clear to me that I need to crack the code. I need Ellie's Rosetta Stone. If anyone knows where I can get it, do let me know.

Save the Children

When I was ages 2 to 4 I used to watch Mister Rogers. My favorite part was imagination land where he would go to the castle and the puppets would have adventures. I liked Mister Rogers. He always seemed so happy that I had tuned in. He was soft spoken and left me feeling calm. Then I outgrew him and went through my childhood and onto high school and college.

The next time I watched him was at my college graduation. He was the keynote speaker. Everyone, including myself, was snickering before he began. Making cracks and wondering if he would be switching into slippers and house sweater. He arrived at the podium in black robes and looking serious, a lot sterner than I remembered. He intoned a few perfunctory remarks congratulating us on our accomplishment of finishing college, etc. Then his voice got a little louder and he started to talk about our responsibility to save the children. He started waving his hands gesturing to mark his points. He was passionate. He spent the rest of the 40-minute speech beseeching us to watch over the younger generations and make the world a better place for them. It was inspiring. Who knew? Calm, soft-spoken Mister Rogers was an activist!

I was reminded of him today when I went clothes shopping. For the record, I love clothes and fashion, but detest shopping. I am very long legged (33” a piece), small and short-waisted, and the proud owner of bicycle racer thighs. The length of my arms totally makes me believe we descended from apes. Finding clothes that fit is challenging. To add insult to injury, the florescent lights of the dressing rooms always makes me look as if I recently emerged from the crypt. As you can see, I am up against some serious issues to even get in the car and go to a store. But I had to go today and yesterday and will have to go again until I find a dress for a wedding we are happy to be attending in January.

What bothered me more than the fact that 99% of the clothes won’t fit me properly were the poor toddlers trailing along with aloof mothers with no toys. What is the deal with this, throw your kid in the cart and expect them to sit there happily with nothing to do but watch you shop? I felt so bad for the little tykes. Do you remember how uncomfortable it is to sit at the bottom of a shopping cart? The cold hard metal grid at the bottom was not made for sitting - even if you only weigh 30 pounds and have knees that still work properly. But tell me, how hard is it to at least bring one or two toys for them?

I am always fascinated when I see little kids at events with no toys. At my sister’s wedding, there was a pre wedding dinner with lots of little kids. We were there with Ellie and her many books, toys, dolls, etc. Ok – it wasn’t that much stuff, but we had stuff. When Ellie had the brain bleed and survived it, the therapists told us to stimulate her. Also, because we almost lost her several times, don’t take one moment of our time with her for granted. On top of that there is this urgency in our minds to give her an enriched environment especially when her brain is still growing. Three year olds use way more brain cells than any adult. Three year olds are amazing in their ability to learn and perceive. Slowly after this age the brain starts to pare back and develop pathways that will determine talents and personality. It’s really fascinating and something we taught ourselves a great deal about in order to help Ellie.

That’s not to say we don’t get burnt out and tired – we do. We aren’t perfect and always as present as we need to be. But when we are on her time, meaning when she is awake, we never leave her without something to do. We fasten toys to her car seat so she can hold them. We take books to restaurants. We take books and toys wherever we go just like we take diapers and her meds. At the wedding there were all these kids and not one with a toy. They all ended up playing with Ellie’s toys, which was great and taught Ellie a little bit about sharing.

Today, when I was out, there were all these kids, being completely ignored by their parents, their little faces desperate with boredom, their brains churning at a phenomenal rate only to spin in frustration. One little girl’s mother went up the escalator without her. The little one was scared of the escalator and wanted to hold mom’s hand. Mom just wanted to get on with it. The little girl was crying and calling to her mother for just about 10 minutes. I hovered nearby in case she got her hand stuck in the thing as she slapped the rail or in case she slipped as she kept trying to get on it. I wondered if the woman was coming back. It made me so nuts. It’s true that sometimes I envy lives of able-bodied families and hate it when I see parents oblivious to their good fortune. It breaks my heart.

But please tell me, what is the deal with parents going to adult places with toddlers and not bringing any toys? I just don’t get it.

Post Birthday Blues

Ellie and Nanny having a laugh. Ellie had a great time on her birthday this year which rendered the party a great success. I did things a little differently this year to really focus on Ellie. Each year for her birthday we have held a big party to thank all the people that have helped us along the way, which made for a big party where mama was busy running around as host. This year after a bit of agonizing and brainstorming, I decided that I would make an event that would include all the things Ellie loves most. I thought about what makes a good day for her, and decided to have a hyperlexic party where Ellie could go from person to person and do what she loves best - read. Though the school people think this is a "splinter skill" and relatively unimportant - we think it's great and our path to helping Ellie express herself. I also decided to spend as much time with her as possible instead of trying to be a Martha Stewart like wonder host.

I was lucky to have a small team of brilliant helpers that included Dada, (Grandma) Nanny Bernie and Grandpa Paddy. We still put on a big spread, but this year I did not invite our whole street and just kept it to family and Ellie's nurses. Ellie gets really overwhelmed by too much noise and too many people.

Here Ellie is styling in her new red velvet Starlet track suite compliments of Auntie Sue, and she loves her new scarf made especially for her by Maureen!
Nanny Bernie and Grandpa Paddy labled everything in the house with white lables and words written in big black letters. We made name tags for everyone on rainbow stickers (Ellie's current favorite song is the rainbow song from Signing Time) so that no matter who Ellie was hanging out with she would have a new word to learn - remember when I mentioned previously how she loves to read our logo shirts? Same idea. We also placed loads of her favorite books everyhwere so people could read to her. During the party Dave and I spent tons of time with her and she got to cuddle with her auntie Lauren and Uncle Brian and her Grandma Irene as well has her beloved Tiffany and Bonnie. For the cake Dave came up with the idea of making it in the shape of a 4. I then implemented this idea and added candles that spelled out Happy Birthday. We showed her the cake and lit each candle as we spelled the words with her. Instead of the birthday song, which Ellie doesn't like, I asked her what song she wanted to sing and she picked, "Ellie you are beautiful" a song I adapted from one a friend taught us. So we sang that and then we helped her blow out her candles.

Nanny singing softly to Ellie before we leave for the airport.
She went to sleep happy and contented if not a bit exhausted. I am not sure what everyone else thought of the party and it's help yourself eats, but I think Ellie enjoyed herself. Because I was spending time with her there are hardly any pictures, but here are a few from the last few days from November 9 to yesterday.

Nanny Bernie and Grandpa Paddy went back to Ireland yesterday. A fact Ellie is keenly aware of. She is still a little weepy today and has had to check out their room a few times to see if they have really gone. The rain is reflecting our mood. Thanks to everyone who helped us make the hyperlexic party fun for Ellie and for all the wonderful birthday pressies. xoxox

Happy 4th Birthday Ellie!

Ellie was born on a rainy Saturday, just like today, November 9 in Los Angeles at 3:01pm. She weighed 2.9 pounds and was 14 inches long - which is considered big for a 27 weeker.




Here are some pictures to give you some idea of how far along she has come from those first scary days four years ago.

Pictures left to right from the top: Day 2 of life: holding hands with Mama through the isolet; 2 months and 4 days old breathing on her own; first time being held by Mama at two weeks old; First time being held by Dada at one month old; Ellie in her Step-N-Play at 18 months; Ellie and her Auntie Sue at 2; Ellie and Mama Easter 2005, Big four year old girl, Ellie, and Mama November 9 reading while waiting for casts.

Is geeky the new cool?

It seems to be in the blogosphere. On many blogs I have read you don’t see a picture of the person first or you see a portion of their face but not their whole face or body. Your first exposure is to their voice, as in writing voice, a representation of who they are nonetheless. Being able to write in your own voice is a great achievement for any writer. But in hearing a person’s “voice” first and not seeing their picture, you get a sense of a person in a way you can’t when you meet them face-to-face.

Have you heard of those musical recitals for some orchestras where the musicians have to play behind the screen so that the judges don’t rule them out based on how they look? It’s true. Malcolm Gladwell talks about this at length in his book, Blink, which I give my highest recommendation. There are other great historic examples of these perceptual challenges as well. For example, until the complete breakdown of the integrity of our voting system the tallest presidential candidate has won – since Lincoln. (Why Lincoln? Because he was the first candidate a lot of Americans had a chance to see in person.) Of course this record was broken when Bush, several inches shorter than Gore cheated the whole electoral process with the help of his crooked brother Jeb - ah - I mean -won the race.

Bush was well aware of these dynamics when it comes to height and the way we judge a person's competence by it, Gladwell called this the Warren Harding Effect. Warren was our 29th president and one of the worst Presidents in history though extremely tall and attractive. Not taking any chances, Bush, during the presidential debates made sure the public would not be aware of how much shorter than Gore he is. His platform was raised to make him look as tall. The media covering the debate was instructed to, in the side-by-side shots, make sure the tops of their heads were level. You can see the camera dip every now and then on Bush. Probably some liberal cameraman pissed off about such a deception.

What does this have to do with geeky being the new cool? Well in the blogosphere you can be reading a person’s blog and they sound cool, interesting, funny, edgy and confident, all things being cool implies. The way some bloggers think and write is hep cat cool. Then you make the mistake of looking this person up on the web, especially if they are one of the more famous bloggers, and there they are at some blogging conference, looking supremely geeky and uncool. The next time you read their blog you become aware of references sprinkled into a post here and there to their greasy hair and gangliness. Dad Gone Mad leaves not doubt of his physical, ahem, let’s say issues. But still, he is cool because he admits in with edge and I like that.

Then there are all the folks blogging who have disabilities. People who are discriminated against in getting jobs and some are shunned by society in general because they are different. But you read their thoughts and they are as crystal clear and relatable as any one having this human experience. I was most struck by this blog. She is amazing and so like you or me in her concerns and the passions of her argument. To look at her you might be put off if you did not understand (see October 29, 2006 post).

This is exactly what happened when the local school sent their psychologist out to evaluate Ellie. Every talent of Ellie’s I mentioned she countered with something that she thought was lacking in Ellie. I told her that Ellie, 3 at the time, knew all her primary and tertiary colors, her alphabet, and numbers up to 10 and was very interested in most things written. She told me that none of that was important and that Ellie should be doing more imaginary play. I then demonstrated how Ellie did do imaginary play by showing her how she interacted with one of her puppets. Amidst Ellie’s giggles, she said, and I quote, “Well, I guess her life is like one big video game.” In sum, she disregarded everything I told her about Ellie and judged Ellie based on how she looked. In doing this, she completely wrote her off. In fact, as she was leaving, her final verdict was this, verbatim, “Well, HMPH! (frowning and throwing her bag over her shoulder) I can see that she is a lot of work!”

I was speechless. I had so many responses I could not verbalize in that moment. The first was, “Well yes any child is if you are doing it right!” Other come backs were more like - YOU STUPID B&TC! And - How Dare you say that at all and especially in front of Ellie, who knows what you are saying – like I told you! And - GET the F*&& out of my house!

I guess it was a good thing I was speechless at the time. There are always going to be dumbasses in the world. Some will have Ph.D’s and hold positions of authority and look like normal people but really just dumbasses.

Perception is a weapon sometimes. It fuels our fears and makes us push people in boxes. When you are listening to people’s voices on their blogs, some of that filtering is taken away and you get a chance to really listen and get to know them without all the sludge of your conditioning to get in the way. Maybe this is my honeymoon period with blogging or maybe I am a geek who aspires to be cool. Whatever the case, I am glad to have discovered this place where people have a chance to get heard with the benefit of a doubt they might not normally get.

I am not talking about only disabled people, I am talking about everyone. If you are a woman, short, a tall man, pretty, ugly, fat, skinny, able bodied, white, black, purple, disabled, etc people have projected their filters on you. They have given you credit where it wasn’t due or underrated you when it wasn’t due and sadly, not seen you for who you really are. Now, I know that what we write on the web is not necessarily exactly who we are all the time, some of us are more transparent then others. The blogosphere, however, allows people to have a voice in society beyond what they might get due to how they look. Blogging exposes me to the voices of the human condition in all its messy glory in a way I would not be able to see face to face. Because of blogging, geeky is the new cool, and it’s about time.

SLOGOSPHERE

Hello out there to my vast readership! I thought I would just check in with all 10 of you to let you know that I still exist. But to be sure, in that kind of impermanent flexi kind of way I described here. Just think of me as your ever-friendly web hologram – fade in, fade out.

I thought I would have to write and tell you I would not be posting much this month because I was attempting to write 50,000 words for NaNoWriMo.

However, as it turns out, my natural proclivity for procrastination is also in full bloom so I am actually posting more. Yes, all you lucky readers of Ryn Tales – more. Not better or more interesting posts – just MORE. After all that is what the theme of this month in my writing world is all about, is it not? More, MORE, MORE.

We're talking 50,000 words more.

What have I done? Truly, am I mad? Here I sit, quarter past midnight, writing a blog post after writing 3,000 words on my slog to win NaNoWriMo where the prize is nothing monetary, nothing auditory like the praise of millions, but incredibly solitary. The sole prize of being able to whisper to your self, “I did it.”

The question is, are 50,000 words that you wrote in haste over thirty days of madness really something to brag about? Is the act of doing so a clear cry for help. Maybe, a subtle attempt to scramble the brain, leaving it forever jumbled up with the computer chords below the desk that have long ago forgotten their purpose? Really, what the F#@& was I thinking?

My creative style up until recently, like 4 days ago, has been one of go and stop. I would work in great bursts of energy and then do nothing creative for months. But here, with NaNoWriMo, I am afforded no such luxury. Nooohohoh. It’s go, go, go every day. The problem is I don’t have time during the day. I told myself if I did this I would not put it before Ellie. During the day is her time. I also have my business seedling to nurture and work to do just about everywhere I look. Ultimately, when things quiet down it’s at least 10pm and I crank out 3,300 words until midnight. The problem is, though my eyes are tired and my heart is guilty knowing I will make it through tomorrow on caffeine jitters, my mind won’t shut up! It says, why stop at 3,300? I’ve got plenty more where that came from. Remember the Pitter Patter post? That’s right lady, you took your finger out of the damn and here I am. What’s this bull about you needing to sleep? It’s all a lie about the mind needing a rest to maintain one’s sanity. Lies I tell you! All lies - mWAHAHAH!

I have decided that my own mind is the spawn of the devil and when NaNoWriMo is over I have vowed never use it again. It’s clearly a creature that needs to be caged at all times. I may even have to watch TV to turn it off completely. For now my starts and stops instead of being on a monthly basis are happening every other day. As a result I have written 5,823 lousy, quality starved, quantity-begging WORDS.

Ellie discovers the couch

First Frost

Slippery steps, fairy leaf and buds, and grassicles

Casting for Hope: Part 2

You can read part one of this saga by clicking here.

Today Ellie had her purple casts removed. I gave her Motrin before we left the house because I knew that Dr. Webster would be recasting her feet in an even greater stretch in the journey to the neutral zone where standing can occur. What I had not planned on is the pain Ellie experienced during this procedure. First off the “saw”, which does not really cut but vibrates is REALLY LOUD. It scared the bejasus out of her. She was literally screaming. And for those of you who know Ellie, she is NOT a screamer. She has only screamed once before when Dr. S sprained her Achilles tendons while examining her. That is the subject of future RANT, I mean post. The other thing that you have to consider when dealing with someone who has a brain injury is that you can’t be sure what something will sound like to them. I was fortunate to meet a 25-year-old man who suffered a traumatic brain injury at birth and has CP. He told me that when he was a toddler his mother would be whispering to him but to him it sounded like she was yelling. That story has stuck with me. I make it a point not to take for granted, because I know Ellie can hear, exactly what or how she hears. We have to do this all again next week on her birthday so I am going to bring earplugs for Ellie.

The first cast, other than the loud saw, came off ok. We gave her a break in between to calm down. She was hyperventilating and the tears were flowing still. Seeing tears on Ellie’s perfect rosebud cheeks and hearing her cry and scream is quite simply - horrible. She is such an easygoing kid that she has never once had one of those totally mortify you in public toddler tantrums. It’s just not her. When she screams and cries with real tears I know something is really wrong.

The second cast coming off was even worse because she was even more upset at the saw and her foot had some sore pressure points that really hurt. There was no skin breakdown but the skin over the bone that protruded out the farthest on her foot was a cadmium red color and looked really painful.

Overall, this was a much tougher experience than I had anticipated. Thank god Bonnie went with us and could help hold Ellie down while they were de-casting her. Once the casts were off, it was much easier to distract her with books and her phone to get the new ones on. Ellie picked red this time and they are quite cheery.

The amazing thing is the change in her feet. The right one especially was naturally “sitting” in a much less turned in position. The left one showed significant improvement as well.

After a good nap she was still a bit weepy and grouchy but when Dave and I lay down with her to help her fall asleep tonight, she was pulling her leg up smiling showing them to Dave. It was really cute. She even seems a little stronger in that they are not wearing her out at much. When she first got them she was just exhausted from the weight of them. Every time she wanted to move she had to lug this extra weight around. She was pale for a week in doing so. But tonight she was flinging her legs around like a champ.

It was definitely one of those experiences as a parent where I had to surrender and know that I was doing right by Ellie and her future even though in the moment it really sucked. She is a warrior princess.

Halloween in all its glory

This year Halloween was especially fun. Dave and I got to go to a costume party the Saturday night before where we looked like this. Alert Fug Reporters Heather and Jessica! We were supposed to be 70’s hep cats. But I am not sure that neon velveteen polyester was available in the 70’s. I’m waffling back and forth but I think I might like Dave better as a brunette, something about those chops. Ooolala! Going to a party (thanks to Kelly who was able to come and look after Ellie) made me nostalgic for my LA days. It was excellent to find myself among adults, albeit, adults dressed as dreadlock wearing pimps, toga toting Caligula’s, pirates in breeches and pro wrestlers to name a few. It was great to get out and about and see through a glass darkly a life that was mine when I in LA. It was good to remember more carefree times.

But what made this year especially fun was that Ellie was way into it. Maybe it was because it was a very warm night and she napped for three hours. Although, at the first sight marauding Jedi’s and X-Men she insisted on being carried from house to house. From Dada’s strong arms she had a great time looking at everyone she saw. We figured out that if I held a candy in each hand she would pick one. There was a night bird in a tree making a thwack, thwack sound that she also thought was hilarious. She also made it through the entire street and round the corner to the little side street. In past years after 3 houses the excitement of it all got the better of her and it was time to go home.

Our little warrior princess is certainly much stronger and looking beyond herself at the outside world these days, which is one more blessed developmental milestone. In sum, it was the best Halloween ever.

You say NaBloPoMo, I say NaBloBigMo…hahahah!

Here at Ryn Tales National Blogaholic Binge Month (NaBloBigMo), originally coined by Mrs. Kennedy at Fussy as National Blog Posting Month (NaBloPoMo), is finally here! Just what you have all been waiting for! I can feel the Blogosphere rumbling and screeching into high gear as bloggers of all kinds go into a headfirst spin down the slippery slope of madness that so characterizes NaBloBigMo. Needless to say it should all be very satisfying.

Just to be clear, I am NOT participating in NaBloBigMo. No, no way! I committed to NaNoWriMo first which you can check out here http://www.nanowrimo.org. If I were to do both I am sure I would slip into the parallel universe forever where I am actually a graying, skinny ass spinster with spiders clinging to my hair as it sweeps the floor as I haunt my ramshackle house with only the company of 300 cats. I shudder at the thought. So, no, No, NO, I just can’t go there.

However, for those of you who are participating in NaBloBigMo because you heard about it here and thought it would be a cool thing to do, I have some suggestions about what you can write about – everydamndayofthemonth! Remember these are just suggestions, you can NaBloBigMo however you like. They are as follows:

November 1 - Document all the batshit insane (BSI) things you did on Halloween. Dave and I looked like this (will load picture as soon as blogger is done fixing their photo upload app - which the picture of us actually broke). Ellie pretty much would not look at me deciding she would prefer it if I go exist in the parallel universe with the cats. If you are of a religious bent, it’s also All Saints Day – so go ahead and pick your favorite saint to expound about in your first entry of NaBloBigMo.

November 2 - List your three favorite blogs and why you like them. That would look something like this: #1. Ryn Tales: It’s informative and funny, 2. Ryn Tales: ditto #1, and 3. Ryn Tales: ditto #1 and #2. Anyway, you get the idea.

November 3 – Share the 10 things you like to do when you are procrastinating. Like for example, I am blogging right now when I should be figuring out what the hell I am going to write my novel about.

November 4 – Your life in pictures – go crazy

November 5 – It’s the full moon tonight so do a free writing like the one I did here just so everyone can be really clear about just how BSI you are. AAAAOOOOOOO!

November 6 – Share who you plan to vote for in the election or at least what you will be wearing when you VOTE!!!!!!!!!!!!!!!!!!!!!!!!!

November 7 – It’s Election Day so GO VOTE and then blog about your voting experience. Did you get any cool stickers with little check marks on them that say “I voted!”? Did you exchange fisticuffs with a voter from another party? Oh wait that was me last time around. I had finished voting against Bush when I bumped into this woman with a big “W” all done up in diamante’s of stars and strips pinned to her cracker barrell chest. I said excuse me, and she said in a Texan drawl, “Vote faw Dubya!” To which I informed her that we had cancelled each other’s vote out entirely. Things went pear shaped from there…

November 8 – Write about how you will bask in the glory of a new democratically controlled congress and renewed hope for the survival of the species and the planet. Or, drown your sorrows in a pint of tequila and help others by blogging about ways you can avoid thinking about the next years of continued republican tyranny.

November 9 – Conquer your post election hangover by listing three beautiful things that gave you pleasure today. In fact, you could just forget this freakishly geeky list and do this every day of the month. If you are lucky, Clare might even link you to her blog honour roll.

November 10 – Do a blog entry you were intending to do anyway. Catch back up with your own life and take a break from reading my blog!

November 11 – It’s Veterans’ Day and I would really love to hear other people’s opinions about why it is, indeed, possible to have empathy and support for our soldiers but still be against the war. You know, the two can really be separate.

November 12 – If you have gotten this far your creative juices are probably up to speed so you can figure out what you want to write about without my #$%^&** help!

Happy NaBloBigMo!!!

Blog This! It's Batshit Insane.

Blog Culture is weird. If I put my organization psychologist hat on, I know I only think it’s weird because I don’t fully understand it – yet. My gut tells me that once I understand it I will actually realize it's “batshit insane”. I really want to know who coined that one? In one day it appeared on the posts of two of my favorite bloggers, which you can read here and here. “Batshit insane” I just want to say it over and over. It cracks me up. Batshit insane – I love it!

Here are some of the surprising and weird things I have discovered about the blogosphere:

1. People plagiarize ideas for posts if not the actual verbiage. Plagiarize might be the wrong word but it’s clear that ideas here feed inspiration there. I think the proper etiquette is to give the person you got the idea from credit like I did here. I have a plagiarism sensitivity chip on my shoulder from way back into my childhood when I would tell my little sister jokes to make her laugh until her ribs ached. Ultimately she would tell MY jokes at the dinner table as if they were her own. Ok – I am a middle child – can’t I at least be the funny one? Like I said, it’s an old chip. It’s my cross to bear in life and its sole purpose is to insidiously breakdown my ego whenever it gets out of control.

2. There are cliques in the blogosphere. I don’t know why that surprised me – but it did. Biz Stone calls them weak ties. Weak ties are the crux of information networks. In this sense the blogosphere is one big brain. I am starting to see how ideas take root and travel at hyperspeed across cyberspace. It’s so interesting in a geeky PhD OP student kind of way.

3. The blogosphere is vast. This is not a surprise to me. I knew it would be big. I have heard figures thrown out like 4.5 thousand new blogs conceived every minute. That's a heck of alotta blogoception going on! I have no idea if that is true. I do know there are more blogs than one person can get through in a day or even a year.

4. For all this blogging, it is still relatively unknown en masse to older generations. And, sadly, by that I mean - my generation. I do see a lot of Genxers blogging. I wonder if they, like me, have worked in high tech. Outside of this group, however, many of my smart, dynamic, wonderful friends are like, “Ah yes, yes, Blogging, it’s the wave of the future.” Ahem – it’s so already here. Or they say, “You blog? Isn’t that like spilling your guts in public? I don’t think I could ever do that.” Luckily, as we bloggers know, you can totally control the gut spillage unless you are a true blogaholic who is ready for Betty Ford. I was surprised how many of my non-techie friends seem a bit put off and definitely felt themselves up against a learning curve when I said to them, “You should blog! I would read you every day!” Kripes if a 70 something Brit can do a You Tube video blog, I think my friends can do a Blogger.com, made for the hopelessly non-tech savvy blog.

5. Knowing a little HTML helps. Yes, this statement just completely obliterates the last sentence of the paragraph before this. Here is what some of the silly stuff looks like when I write it: F@#K S#K%!

But it’s true. If you really want a cool, dooce-quality blog you need to customize it. You need to go beyond Blogger.com. You have to get into WordPress or Typo and then fix the issues with your template by inserting the right HTML commands. If anyone out there knows of a good HTML book, please let me know. I just can’t bear to get HTML For Dummies out of the library. Why start learning from someone who is already beating you up? I will need lots of positive feedback at all times if I am going to tackle something like HTML.

6. Bloggers that you initially found to be extremely humorous are only mildly so after you read them for a while. I am sure my blog is included. Reading a great many blogs is like watching a lot of TV. In my experience when I don’t watch TV for a really long time, and I have gone years, once I do watch it, it’s really funny. Commercials are just hilarious in a batshit insane kind of way. (Had to use it again.) I think blog reading is like that. You need to step back so you don’t over do it. I try to help others with this issue by not posting everydamnday! Take a break, give your brain a rest and then come back to Ryn Tales and it will all seem so much better. I guarantee it. And notice how I don’t say better than it actually is? I say this because in my world reality is constructed. Yep, make of it what you like. Know that in holding this view, and being a tad OCD about it, I feel the necessity of going back into old posts to add pictures, delete errors or add thoughts like this one.

7. There is a lot of heart and courage in the blogosphere. I am really impressed with the willingness of people to share their stories with such honesty and clarity. I have been especially helped by the bloggers who write about life with disability. The Gimp Parade recently made me consider Ellie’s life, as it is, in a new way. That may sound odd, but go ahead and read the header on The Gimp Parade and if you think you can still judge the truth of it after that let me know.

8. I think blogging on a regular basis, like journaling, can give you greater clarity and perspective on your life. The big difference is, of course, that there are always readers out there to add to your newfound perspective by letting you know you are batshit insane (I couldn't resist). That is way more dynamic than journaling. For the record, if I read your blog and I think you are full of shit, I won’t email you or comment. I will just keep it to my lurking self.

There is a lot more to be learned from the blogosphere I found in my petri dish, but that’s it for tonight. Goodnight to all my loyal lurkers!

Waiting, waiting as fast as I can

Sometimes you have to go slow, to go fast. This is the theme of my life at the moment. Do you hear the Gwen Stephanie Running Running as fast as I can track in the background - well change running to waiting and that is the song I can't get out of my head? Thirty plus years of growing, learning, working hard and generally excelling are all on hold. It’s as if someone upstairs hit the big PAUSE button on the remote running my world through the TIVO in the sky. This message is everywhere. Ok I get it! Enough already. I keep getting the message to slow down through passages of books I read and "random" stories my friends tell me. Sometimes you have to slow down in order to go forward. Ok, I get the concept. But, who, I ask you, WHO in their right mind wants to slow down? Not me, that much is true.

I was so depressed about living life in the slow lane that I had a craving for comfort food. I told Dave, when he came home last night, “I want to make Mac-N-Cheese.” He replied, “Today that bad?”

“You mean last night that ran over today crushing it with bleary eyed wakefulness? You mean with no naps for a very cranky Lady Muck, who hates her casts? Yes, it was that bad.” I replied getting up to start on dinner. Dave has clearly transcended his husband training status because at this he said nothing.

I started to pull out ingredients realizing I had forgotten how to make it. I called Mom to ask her how. And what had she just popped into the oven but the very same dish. For the record, you cook the noodles and cheese sauce beforehand to ensure all live enzymes and germs are dead and to allow the Trans-fats to properly rev up their carcinogenic properties. Then you bake this 1960’s delicacy topped with Ritz for another 50 minutes.

When my Mom told me she was making the same thing at first I thought it was one of those cool synergistic moments when you know you are on the same wavelength with someone else. It’s really fun when it happens with your husband or say, someone like, Stephen Hawking or Madonna. But when it happens with your mom, who as it turns out, is living in the parallel universe next to yours….

Oh Gods of TIVO, please take me off pause and switch the channel!

Casting for Hope

Casting
Today Ellie got her first set of casts to commence the process of keeping her feet at neutral. I gave her some Motrin to try to stay ahead of any discomfort from having her feet twisted and bound into a permanent stretch. B came with us, which was great because it really took two people, one to hold Ellie’s leg to keep it in position and one to distract her. This worked very well. If I can guess what it felt like from Ellie’s perspective, she got to have Mama’s 100% attention and her favorite page of her favorite book read to her over and over again. Each word spelled out as she pointed to the letters. “W. H. O. apostrophe S. Who’s, meaning who is, That, T. H. A. T.” and so on. She was in heaven.

While the Mama show played Dr. Webster moved Ellie’s foot into position as R. wrapped the casting material around her foot up to her knee. During this B held Ellie’s leg. Ellie was mostly concerned with reading her books. She would look down when I would and when I would look back she would be smiling up at me or telling me to get on with the reading. After all, she was awake, right? Awake equal play at all moments. No down time from play is ever needed. I obliged.

The casts themselves are not the monstrosities I thought they would be. I had many casts as a kid for clubfeet and those casts were made of plaster and HEAVY. These casts were made of fiberglass and relatively light. The hardest part of the application was the cutting out of the toe, which made me nervous but ended with 10 toes intact. Her toes do look a little squished but that is because her feet are not at neutral this time around. The serial casting is such that it is supposed to minimize the pain. There should be no pain for Ellie after the first 24 hours. I will watch this closely.

For the rest of the day Ellie seemed to be unimpressed with her “fancy boots”. They are purple and have not impeded her movement. She did reach down at them while I was changing her diaper as if to say what’s up with that?

Parental Angst
Other parents who may be lurking out there, answer me this: Is Parenthood a complete set up to make you feel, more often then you ever have before, like you don’t know what the hell you are doing?”

The Conundrum
The conundrum is that you can stretch muscles yes – but you can’t stretch tendons. Stretching tendons only weakens them. Have you ever noticed that when you sprain your ankle that you tend to twist it more than you used to? That is because you have pulled and stretched the tendon leaving it forever that little bit weaker. The casting we are doing does not discriminate. We are stretching tendons as well as the muscles. If you have read some of my other posts you might recognize this situation as the classic picking of the lesser evil. On the one hand we do PT and stretches as we have been and Ellie’s feet become more and more clubbed ensuring she will never walk. And on the other hand we can inject her muscles with scary substances then cast and stretch out her tendons and muscles hoping that the integrity of her foot and ankle will allow her to bear weight on her legs and eventually walk or ambulate.

There is a path that I had hoped would have allowed me to avoid the lesser evil scenario. This road includes doing two hours of therapy on Ellie daily to increase the strength of her diaphragm. The technique we use is called the Scotson technique and you can read about it by clicking here. We have been doing this therapy with Ellie for over 2 years. It has been very successful at increasing her ability to breath and assimilate oxygen into her blood. It has also, through the use of air splints, relieved the spasticity in her hands – especially her left hand that was starting to curl over onto itself. If we miss a week of this therapy I see that hand start to get tight. There are many ways that this therapy is helping Ellie.

As promised by Linda Scotson and Co., this therapy builds up the diaphragm using gentle pressures in a rhythmic way. In doing so it the diaphragm is able to work harder signaling the body to build more blood and in turn build more capillaries. The entire circulatory system is improved. The theory postulates that by doing this, any plasticity that can be realized in the damage brain will be. I think this logic still holds very well. But when it came to Ellie’s ankles we are running out of time. The therapy works from the diaphragm out, the feet are the last to be affected. Contractures become permanent and The Scotson technique, while highly effective, takes time. I am have the need to let gravity help Ellie’s bones to grow properly. The regime we stick to includes a great deal of tummy time. This has saved Ellie’s back from curvature and her hips and pelvis from deformity that can happen when you place a body in a position it is not ready to support like sitting or standing. My approach to weight bearing is more homeopathic meaning less is more. I want to have Ellie be able to stand in her stander for maybe 5 to 10 minutes per day.

The medical paradigm and approach to “treatment” for CP is horrifyingly not one of healing but one of management. Meaning, let’s make sure we can still bend this kid so we can get them in their wheelchair. It was horrible to first realize that many medical interventions designed to “treat” the many conditions generalized as cerebral palsy were mainly created to ensure management of the patient by the caretaker not to actually heal the patient. This is why we agonize over most decisions we make for Ellie when it comes to subjecting her to medical interventions.

So here I am casting for hope. Hope that Ellie will one day walk. Hope that Botox and casting will stop the contractures. Hope that all of this will ease any pain that she may be having due to the spasticity. Hope. For all my education and talents, hope is what I have at the end of the day. Medicine does not have all the answers, though I really wish it did. I wish someone did, it would make things so much easier. But when it comes to the brain and how it really works – no one knows for sure. I am left with hope and my eyes, which are still watching the baby as they have been since day 1 of life. Watch the child because she will lead the way.

Luxury for all?

Have we become a society of foodies and product people? Are luxury goods available on a scale unheard of in the past? Do the non-rich really have access to the same things mega-rich people do? Good food, good wine, goods made to pamper the body, therapies designed to mellow the mind, and the usual necessities that proliferate our culture – coffee and chocolate and cotton. Does the status of our credit card Nation attest to the fact that we all want the finer things and are often too willing to live beyond our means to get them? Is it that this generation, unlike others in the past, does not look to the future because of an unspoken assumption that there is none?

Someone once said to me that every generation conceives of it’s problems as worse than the one before. The depression era babies went from poverty straight into WWII. The baby boomers started out in a consciousness of abundance, possibly the knee jerk reaction of their parents as a way to deal with posttraumatic stress – give the kid everything. The advertisements in the 50’s would show a running tap and an announcer would say in a booming voice, “Go ahead, run the tap! There is enough water to run it forever!” It was as if this generation collectively decided, “The world is our oyster and we will eat and eat and eat.”

Then these pampered, abundance loving, consumer boomers dealt with Vietnam and the cold war. Gen X and Y are dealing with genocides on such mass scale. It seems that the global horror felt at the holocaust is not present for more recent genocides. The world’s muted response to Tibet, Rwanda, and the Kurds and others is perplexing in an intellectual sense and horrifying in an empathic one. Gen X and Y are living in a world where genocide is so rampant that mass protest of them does not occur.

The old symbols of security have also crumbled with many Enrons and Halliburtons ensuring the end of the job. No one in my generation in his or her right mind truly believes in the pension myth. The very thought of a company that will provide for us in our old age is laughable. I have yet to meet another Gen X’er that believes they will ever see one cent from Social Security in their old age. It’s not like we bemoan this. We just live with it the same as we live with our understanding that the earth is round and acid rain falls on the Adirondacks.

So do we bargain our future for a little momentary comfort? Does my Peet’s latte distract me from the real fear that North Korea may nuclear bomb the crap out of us tomorrow?

In parallel to the over spending masses, the rich are getting richer and the gap between rich and poor wider and wider. NPR was having a discussion about this that touched upon the expectations the rich have of aging. The whole idea of looking your best was put into a whole new plastic perspective. The question, it seems has become, not if you will elect for plastic surgery, but when you will NEED it - that is if you care about keeping up your status in society as a worthwhile human being. After listening to this show I realized that the gulf between the wealthiest elite and me is really, really HUGE. The gulf I saw spans beyond what they own and I don’t all the way into a difference in values.

So do we really have what the truly wealthy have? I think, probably not. I know of a few truly wealthy people. They go to places I have never heard of and wear watches that make Rolex look shabby. But PR firms and marketers bank on their assumption that I don't know there is a level of wealth beyond Rolex. And you know what? They are really onto something. They market Luxury. In Europe they are way more obtuse about it. They actually call goods Luxury soap or Luxury chocolate. The word Luxury itself gets attached as if it is some sort of proof of quality; a ticket to a parallel universe where there is no war or poverty all for a $3.50 cup of chai.

Did I mention one of my undergraduate degrees was in philosophy? I can’t help thinking about all this when Christmas is nearly upon us. For me that has always been a time when I have come face to face with the fact that instead of buying my ticket into the safe oblivion of the parallel universe, I should have been saving that money for stocking stuffers.

3BT All About Ellie

1. She went swimming for the first time last week and loved it. BIG THANK YOU to Tiffany and Jason for making this happen. Ellie gets cold very quickly so swimming in the ocean in New England is not possible and because of her g-tube ponds and their amoebic denizens are prohibited so a therapy pool is our best/only option. She stayed in for 25 minutes playing peek-a-boo and "chase" Tiffany. She also just hung out and felt herself light and floating. Ahhhhh!

2. Ellie has been coming back from her oral aversion redux. She is eating about half of her meal for Dave and I on a regular basis. AND she ate a little for me on our own with the help of baby Einstein and Brown Bear, Brown Bear. We have to keep our eye on the prize and know that we will get back to our Ellie who was eating 2 cups of porridge in one sitting in under 20 minutes. Here she is snuggled up with Dada watching the Mama show.

3. The fact that my husband is the best father a little girl could ask for.

4. The moment when Dave doesn't kill me for putting him on the web in his "jammies" in desperate need of a haircut. That is love!

National Novel Writing Month = Blogaholic Binge Month!

If you haven't heard, November is National Novel Writing Month. Alert the press and check it out at http://www.nanowrimo.org !

I am signed up. How hard can it be to write 50,000 words in one month? In all my free time between 3am and 5am when I am lying there awake because of 4 years of Ellie’s conditioning I could be so much more productive. It’s quiet then, no one will interrupt me, ahem, meaning Dave! Why is it that I find it impossible to tune out his voice? He is so much better at tuning me out than I am him – it’s so not fair. But I am working on it. All good married people need to be able to control their psychic space, right!?

Anyway, this is the perfect opportunity to really get my creative sensibilities into high gear. It’ll be like boot camp for out of shape writers. It’s great for someone like me who prefers to write in fragments versus full sentences because they are truly NOT concerned with quality but quantity. Hooray ! I have found my people.

I have always wanted to write a novel and here is my chance. The title of my novel is, Things You Can’t Say To My Face. If you want to be one of my “writing buddies” let me know and I will add you to my list.

I heard about this amazing opportunity to procrastinate getting on with my real work through Laid Off Dad. He is one of the best writers on the web. He routinely uses words like “leitmotif” and “oeuvre” that I am forced to look up because of my startlingly poor French vocabulary. While it's not clear if he is going to try to crank out 50,000 French root words in November, he does plan to participate in NaBloWriMo - National Blog Writing Month, “... just to see how badly I (LOD) can gum up the Interwebs with unfiltered blather”. On that count, because I am a far worse writer, I think I can way, way out blather him.

He references NaBloWriMo via Mrs. Kennedy at Fussy who is encouraging everyone to put some wind into gray November by blogging every day. For the other Blogaholics out there, have at it. Indulge in your addiction and write, write, write. Mrs. Kennedy has graciously designed some really cool write with a gun to your head logos. There is even one featuring Yoda, but it will only be available for a limited time (until George Lucas’s team of copy write lawyers raid her home, abduct her and take down Fussy dot org). So get em while you can.

Again, if you want to be my writing buddy, let me know.
Enjoy!

Three+ Beautiful Things - October 13, 2006

1. Ellie is nearly back to her old self though still a bit tired from yesterday's ordeal.
2. Ellie hugged me twice today by putting her arm around my neck! I have been trying to teach her for a few weeks how to ride "side saddle" on my hip and tell her to put her arm around my neck. She did that twice today with the sweetest smile and a great big nuzzle.
3. Ellie eating by mouth for me and Dave again for the third time in a row.
4. The amazing Fall colors that make the leafy suburban terrain so much the better. This is the most beautiful time of year to find yourself in New England.

The Bravest Little Girl

Ellie playing with Pooh after her nap.
This post is dedicated to Ellie, who is the bravest little girl in the world and has had a rough day. The past few posts I have joked about this or that and in truth, it has been somewhat of a gallows humor. This blog is supposed to be about parenting a child with disability. Sometimes I get a bit punchy before facing really tough things. Things I would not choose to face in a million lifetimes if I had my druthers. And I have been facing today for a couple of weeks. Now that we have faced it, I can write about it and maybe save another poor mother or father some trouble. It’s not that we mothers of special needs kids are not informed. It’s just that each “intervention” carries an element of unknown consequences. When we were in the NICU we learned early on that all of Neonatology involved choosing between the lesser of two evils. Today we made such a choice and have lived to tell the tale.

To tell you what happened and why we did what we did I have to make sure you know some basics about cerebral palsy. For those of you already living the dream skip to the next paragraph. All children with cerebral palsy have varying and mixed degrees of Hypertonia and Hypotonia. Hypotonia means your kid has weak muscle tone and is “floppy”. These kids might have trouble holding their head up and sitting, etc. Kids who are hypertonic are stiff and in extension (arms out, legs out) a great deal. This is called spasticity. Dystonia is when you go to do something and you go into a rapid extension. Ellie, lucky girl, is Hypotonic with an overlay of Spasticity in her legs. To compound things, the act of growing can make spasticity worse. The interesting and awful thing that happens when the brain is damaged is that it turns things unendingly ON. In Ellie’s case the Equinovarus deformity from the spasticity in her ankles is due to muscles that are constantly being flexed and pulling her foot in. Try it and see. Flex one of your major muscle groups like your calf muscles or bicep. Hold it for as long as you can. Sucks, huh? But now you have a modicum of an idea what spasticity feels like. In a growing child such a thing can deform limbs. You may have seen people with CP who have a hand that is turned down at the wrist at a seemingly impossible angle and held close to the body. That is the result of spasticity, the constant firing of neurons to the muscle which in turn pulls the bones and ligaments permanently out of place to the point where eventually there is a complete loss of function.

Ok – there are some cerebral palsy basics for you. Today we went to the Floating Hospital in Boston and had Dr. Webster perform a Botox treatment on Ellie. Botox you say?! Yes, there is actually a more noble application for Botox than making sure no one sweats at the OSCARS and Reese Witherspoon’s pretty brow is not furrowed.

Dr. Harry Webster is on his game and passionate about his kids. He did the whole thing with good pain management and a deftness that comes only to those surgeons that are truly talented. He was in Flow. Which is just where you want someone to be when he or she pumps botulism into your kid’s leg muscles.

Some days I can’t believe the details of my own life. As an expectant mother you consider things like the kind of diapers you will use, the books you will read to your kid, the food you will feed then. Anyway, I know you may not know me well but these are words of high praise for a doctor. We are not the type of people who just blindly do what the doctors tell us. We have been putting off this treatment for two years. There are some interventions like getting Ellie a Fundoplication that we have outright refused. (I really need to write about g-tubes, eating and nutrition and fundo’s).

If you are facing Botox injections with your child, I really believe that deciding when to do it you should consider two criteria. 1. Is your child ready to walk? 2. Are they at risk of permanent deformation and contractures that will ensure they never walk?

Ellie met both criteria.

A word on Pain Management:
Two years ago, among the many ‘signs’ that it was not the right time to give Ellie Botox was the fact that a doctor at another well-known hospital scheduled the treatment for her with NO pain management at all. After having seen the procedure today and my child’s reaction to it, I can tell you, providing pain management is critical. Getting Botox is very painful even when sedated. Botox is shot directly into the muscle. Ever had a tetanus shot? Multiply the pain of that by 100.

Our pain management for Ellie consisted of 3 things:
1. Emla Cream. This was put on the exact point of the injections including the shot of Versed. Like, most NICU babies Ellie has had over 200 needle sticks, so why add to that?! That said Emla only works on numbing the skin, not the muscle, which still hurts like a bear when poked with a needle. Again, think Tetanus x 100.

2. Versed. This was injected directly into Ellie’s thigh muscle and made her drowsy and is supposed to make her forget any of this ever happened. As I write that it sounds awful and if you click on the link and read the description you will think I am awful too to ever let my kid have that. I feel like some psychotic parent covering up their crimes with some designer drug. However, after seeing the Botox injections, I am glad she will forget because she would have never forgiven me otherwise.

3. Over the counter Ibuprofen the minute we got home. Dr. Webster said the injections are the hard part and once the Botox is in, it does not hurt. I wish I had Reese’s number so I could ask her directly. Does that stuff in your forehead hurt right after? And if so, for how long?

So you might be thinking, why not put her out completely under general anesthesia? Good question. Our answer is that this is counter indicated for anyone with any brain injury. When kids like Ellie go under they can be set back for weeks and possibly months in their functioning and development. It takes a long time for their brain and already weakened bodies to recover from general anesthesia. We minimize Ellie’s exposure to anesthesia as much as possible. For example, we have never had to give it to her for MRI scans of her brain. During MRI’s there can be no movement. We have been able to distract her with mirror balls and light and songs and whatever it took. For her ABR’s (brain response hearing test) we have been successful at scheduling them at naptime so she would sleep during the test. My main point is that sometimes medicine becomes dogmatic. I have a bias against younger practitioners who still think they are god but are too afraid to think outside of the box. For example, always pairing a g-tube with a fundo even if it ensures that the child will not eat by mouth. If a doctor’s answer to your question is ever, because that is the way it is always done, or any derivative thereof, find another doctor who thinks for him/her self and considers each patient a unique case.

As parents we have questioned everything and educated ourselves so we could make the best choices for this little soul that is in our care. No child deserves less. When we don’t know what something is, we educate ourselves. The only prerequisites we have are our abilities to read and think. There are a ton of resources on line (see the links in this post). We have bought many medical texts in order to catch up with the doctors and understand the choices being laid before us. We had to because our “Yes, do that” or “No don’t”, especially when Ellie was in the NICU, meant the difference between life and death for her. So we wanted to understand our choices. We found that the worst doctors don’t take into account the patient’s whole life. When they first told us about shunts I had questions about the tubing that would go into Ellie’s abdominal cavity and it’s effect on her reproductive organs. That stopped the team in their tracks.

Isn’t this a mother’s logic? I think about Ellie’s whole life from birth to death and I don’t want her choices limited because someone was not being thoughtful enough to consider all the implications. (Incidentally, this is also makes me a very formidable chess player that Dave still has yet to beat.)

We have also learned so much from other parents. In the NICU two very wonderful people who were a few months ahead of us in their journey gave us some very good advice. C and W told us to ask each question three times to three different people. Best advice ever for any parent facing a long NICU stay. We still do this. The thing is, you always get three different answers. Medicine is not an exact science that is why they say practicing medicine. Woe to any parent who does not participate in the thinking process of solving their child’s issues.

Upon climbing off my soapbox, I can tell you that Ellie is sleeping now. We will see if the Botox works. The next step is serial casting to get her feet back to neutral so she can stand on them. I know Ellie would much prefer to be able to ambulate or walk to get her toys versus having to roll a few feet, look to locate, and roll again. Ellie is a great roller but when you have to roll to get stuff you can get stuck on other things like couches and corners. Ellie wants her independence; this I am sure of.

Hopefully this path with Botox along the way will get us there. It seems the lesser of two evils. She is braver than me. I had to keep from sobbing during the entire thing. Once it was over she smiled at her Daddy and the sun shone again.

Flogging

Once again it’s almost midnight and my husband and I are still blogging. This wit fest of a post came to me as I was shutting down my computer and whisper-yelling at Dave, “We have to go to bed – now! Ellie will be up in three hours!” We have spent the evening semi apart, me at my desk in the drafty front room / office / unused but sadly expectant 7’X5’ art studio and he at the kitchen table. We run back and forth to take a look at each others latest comments that were moderated successfully into the blogosphere. We discuss WordPress templates and the merits of Biz Stone’s book, Who Let the Blogs Out? Great book but; what were his parents thinking?

We are shamefully geeky. TICK, TOCK, TICK, TOCK ROUND THE CLOCK, STILL BLOGGING AWAY. Blogging, though easy, fun and the very thing that is going to deliver us from the long, low-lit New England Winter, is, quite simply - ADDICTIVE!

Biz claims it makes you smarter and that it’s about being in the moment. I agree. Being in the moment is the essence of blogging. I wrote my master’s thesis about this being in the moment, time stopping crap and can tell you it’s called Flow. One of the main side effects of Flow is that it feels great. Your self-efficacy rises; your mind is optimally engaged. It’s a tiptoe on the fine line between stress and boredom.

However, since I began blogging I have gained a whole new perspective on Flow. Or maybe I should call it Flog or Flogging for the new phenomenon of being in the Flow whilst blogging…hmmm. You read it here first. Flogging. Ok – actually that means to whip someone… well, if the shoe fits…

Anyway, I discovered that when you are actually in the moment, time goes by way faster than if you are worrying about the future or pining for the past. It’s such a bummer. When I finally get the knack of being in the moment I run out of time to do it for long!

But is this not the essence of addiction? Time spent with the drug of choice, or your blog, is never enough. When you are not imbibing your drug of choice you are thinking about the next time you will. For example, since I started my blog I have had to stop what I was doing to capture a funny thought that will turn into some witty post and in doing so the 73 minutes, 13 seconds, and 12 nanoseconds that Ellie naps vanishes before you can say, “Publish My Post”. It’s just outright irresponsible. Instead of looking for work, honing my experience summary, responding to requests for lunch with people who could potentially hire me, I am thinking about how to make interesting and funny comments on my life. Yes, my life, which is getting more myopic by the moment.

Some humorless fascist once told me that I was my own biggest fan. Damn him, he’s right. My blog, where posts go to die, is a one-way ticket. I laugh at my own posts but I don’t know if anyone else does. So does that mean I am sitting here making up things to amuse myself? Yikes, the thought of it and implications are reverberating to the depth of my over educated psychologist psyche. If anyone out there want’s to start a 12-step program for obsessive bloggers, please, contact me immediately! Isn’t that the first step? Admitting there’s a problem?

Hello, my name is Kathyrn and I’m a Blogaholic.

Tribute to Three Beautiful Things

I love this site. It's a great idea and Clare is a generous linker!
Three beautiful things in words and pictures:
1. Dave's apple pie. mmmmmmm

2. Last tea rose to bloom before winter.

3. Ellie, holding the toy all by herself.

Ellie on eating pureed beets

I will not eat them here or there.
I will not eat them anywhere.
I will not eat them in a house.
I will not eat them with a mouse.
I do not like them here or there.
I do not like them anywhere!