A Slice of our life before 9am: Ten Beautiful Things

1. I wake up before Ellie. It’s 6:20am. The house is quiet and filling up with early morning sun. I feel good. She slept through the night. I peek in at her. Her arms are out wide. Her breathing is steady and the deepest I have seen it in awhile. She looks content. I think I can actually hear her growing. There are no dark circles under her eyes. It was a good night for her too.

2. I tip toe downstairs and measure out her meds; Protonix, Cisipride, and Zantac to battle her reflux and Depakane to keep the seizures at bay. I drink water. Every day I get a bit dehydrated because she keeps me hopping. I forget to look after myself. This morning I drink two 10-ounce glasses worth. My body thanks me. I am bargaining with myself in doing this because I know that for every cup of coffee I drink I need to replace it’s diuretic effects with two cups of water. I am multi tasking – quench the dehydration of the night and get a jump on the two cups of coffee I will drink later.

3. The coffee pot sputters and gurgles and spreads its aroma across the room over the unfinished floor that is soaking up the morning rays. I take this time to contemplate and take some deep breaths to get ready for the day. I am again grateful that she slept through the night. My contemplation is distracted by two things: the fact that I know I only have one or two moments more until she is awake and needs my complete attention and thoughts of Dave. He is out of town. Working hard in the middle of some industrial wasteland, a long way from Boston and sunny LA. He had to leave just as Ellie got home from the hospital. The first night he was gone she woke up at 11pm. Nothing would console her for 2+ hours because she wanted to snuggle up with Dada. Mama just would not do. A tribute to how great a dad Dave is. That makes me smile. There are so many people in Ellie’s life that she is far away from and when she sees their picture she let’s me know she wants them. She puts her thumb on them and says “Uh!” and looks around like the person is hiding. Very cute. Heartbreaking.

4. She is awake. I can hear her tiny voice on the monitor. She is babbling away mostly vowels and very few consonants. But I know she is asking for me. I go in. “Hello! Oh, it’s so good to see you.” She smiles, eyes half open, kicks her feet and waves her arms in dystonic reverie. I pick her up. Bring her down stairs. We land on the couch. She immediately starts looking for toys to play with. I tell her good morning. Ask for a good morning hug. She obliges by burrowing her face into my shoulder. I sign thank you. She scrunches. Not getting toys fast enough. She puts her right arm over her eye. Her whole body scrunches inward. I ask her, “Are you grumpy?” She looks at me. I hold out two hands. Wave the first hand as I say, “Is Ellie happy?”. Then I wave the second hand in front of her and ask, “or grumpy?”. Ellie picks grumpy. I say, “That’s ok. Sometimes people get grumpy in the morning. How about you sit in your Bumbo chair?” More scrunching. I know she wants to play from her favorite platform, mama’s lap. She is too heavy to carry back and forth to the kitchen so I need to put her in her Bumbo. There she can be upright, clear her fluids and stuffy nose as well as play. I put her in the Bumbo anyway. As soon as I do I ask her, “Do you want to play Globe with me?” At this she squeals, LOUD, "EEEEEEEEEEEEEEE!". She has this maniacal look in her eyes. Her eyebrows arch in perfect triangles. The squealing continues only to be interrupted by dystonic arms flung out to each side. She throws her head side to side. This is then followed by Ellie pushing up with her feet, which makes her bounce a little up and down in her seat. She can’t move and vocalize much at the same time. After this she stops moving and squeals some more. It’s very cute.

This is what Ellie does when she is excited and happy. It’s a tremendous way to say YES!

5. I become Ellie’s hands and arms so that we can do some imaginary play Ellie style. Her Pooh toy has to dance on top Globe about 500 times. She grabs a cloth napkin nearby and tries to put it over Pooh. This indicates she wants me to cover up Pooh so she can find whom that is dancing a top Globe. We do this many times to many squeals of delight and dystonic arms and head. Then she reaches for her Doodlepro saying “uh”. I get it. Place it in front of her. She reaches, grabs the pen and moves it toward my hand. I ask her, “Do you want to spell things on Globe?” Smile and another “uh” while leaning forward. I ask her, “Ellie, where is this?” I have written AFRICA on the Doodlepro. Before I am even done writing it she is turning the globe around to find Africa. She puts her whole hand on it and looks at me with an expectant smile. I praise her for finding Africa. She then wants to spell Africa Ellie style. We do this for each continent and the poles and the equator. She has found a new part of globe and puts her thumb on the north south east west compass. She looks at me and says “ah” with her right eye brow raised. That’s her facial reaction when she discovers something new. It’s so cute. I tell her about the compass. Then she puts her hand on Doodlepro. She wants me to spell the word compass. I do and she is delighted. She then puts her thumb on each letter of the word. I read each letter she touches. I go at her pace. “C. OOOO. MMMM. P. A. S. S!”

This is how Ellie learns.

6. In between all of this I have given her Protonix, then 20 minutes later Cisipride. Now it’s time to change her diaper, get dressed and get her AFO’s on. She tolerates all of this because I have propped her up on a Boppy. Big Teddy bear is holding up Doodlepro for her. Raggedy Ann is keeping her company. She is examining Raggedy’s red hair and pulls the pen from the Doodlepro. I know she wants me to write. I do. I write Red Hair. Ellie is delighted. We talk about Raggedy’s hair, face, clothes. We look to find where it says "I love you" in a heart over her “heart”. It is new that Ellie is more interested in these non-musical, non-mechanical toys. She takes Raggedy in by both hands, one on each side of her head and starts to babble to her. This is new too, using both hands so well to hold a toy up. It’s major progress. I am happy to see her doing imaginary play all on her own. I ask her, “Is Raggedy your friend (I sign friend as I say it), your girl friend (signing as I go)?” Big cheeky grin and then back to babbling at her girl friend. Getting dressed can take 20 minutes. Ellie looks happy. She has stopped playing and is looking at me contented. I ask her as described before with my hands, “Are you happy or grumpy?” This time she picks happy and smiles. I say, “Oh that’s great, me too. Are you hungry?” Big dystonic reaction. I ask her, “Want to eat some cereal?” Her reply, “Ah” reaching for my hand wanting me to pick her up.

7. I do and hold her close to lift 24.5 pounds of her. She does not help or hold on. She fearlessly wiggles to turn round in my arms to face forward to see where she is headed. I tell her we are going to the table to her big chair (kid kart express). That she can play while mama makes her cereal. I strap her in her chair and put a blue non-slip mat in front of her on the table and ask her which toy she wants by giving her a choice of two. She picks her Sing and Discover Piano. She sits facing me as I make her food.


8. I prepare her breakfast, organic multigrain instant baby cereal in organic rice milk, and my own, Pete’s Arabian Mocha Java coffee and toast. She plays this little rif that comes if you press the elephant button a couple of times. She knows I like it because I always sing it back and tell her it’s jazz. I echo it back to her now to her delight. She plays it again. I sing it back. Then she plays another song that I sing with the toy from across the room. This is her way of communicating with me. I wonder if she has a future as a DJ.

9. I bring the food over. The struggle begins to get her to eat by mouth. I try to gently do her mouth exercises. I say, "Warm up Ellie's mouth!" Even with the sound effects and trying to make it fun she is having none of it. I ask her if she wants to do them on mama. She grabs my face for a moment and then tries to sit up on the table. She loves the “wood” table. Wood and table are new things she has learned and is far more interested in them than eating. She is hungry but just won’t focus on the food. She is practicing all manner of avoidance. It’s hard. It’s frustrating and sad because last May she was eating most of her food by mouth. Now she refuses all food. I think I must take her to some sort of feeding clinic. I give up after 20 minutes and give her the bolus through her g-tube and her Depakane with it. We read and I eat my toast and ask her if she wants some. Nope. Sigh.

10. Out the window I see a glorious sunny February day warm enough to go for a walk.

Even bigger picture

Before I knew about the field of organizational psychology I quit being an artist and started off to find a career I could feel good about making money at. On this search I got a job at a group home for juvenile delinquent boys ages 13-19 called Our House. It was an amazing place started by a former flower child and innovative peace loving thinker who devised a method of holding the boys accountable for their actions that did not involve any physical take downs or restraints. The doors were not even locked ever. It was a great experience. I started a GED program and taught art and Art and Math classes as well as set up a computer room for their use and to learn basic computer programs. They were usually with us for 4 –6 months and during that time you would see them get to become kids again.

The sad part was that they would be sent home to the same drug addicted parents or rough neighborhood and most of the time you would hear that they were back in lock up or worse. I realized it would burn me out to be working at this level for the long term and decided that I wanted to work with whole systems to change them for the better.

The focus on the big picture of our society’s mistreatment of the disabled seem to be missing from the conversation that starts with the question, “Should we resuscitate preemies and who should decide?” and travels through to asking, “What happened to them after age 2?” But is has not yet landed on my question which is,

“What if society actually supported and accepted its disabled as a valued and important part?”

This is a discussion of isms.

Disability is an ism. The fact is that society does not tolerate isms well, especially those in the minority. It balks at those that do not meet up to aesthetic standards of beauty and usefulness. Of course these aesthetics are shallow and ruled by ignorance and an assortment of negative drives. A critical cause behind outcomes like the case of Ashley Treatment occur because society is in general not supportive of people with disabilities in just the same way that corporate America is discriminatory against women and people of color. Now of course there are tons of people who are supportive of the disabled - but on the whole society is not. I know this because when people or organizations are really committed to something and supportive of it they act on it and put money into it. Like I said, many NICUs are the star earners/cash cows for hospitals so the bias is to keep em running and keep expanding our knowledge of neonatology – which is a great thing. But it could also explain whey there is so little hoopla and understanding of the outcomes of former preemies who are at home and needing support and not bringing in huge sums for healthcare providers for critical treatments. I have found that I have to fight insurance for the chronic conditions that Ellie has. Cerebral Palsy for instance is a chronic condition and requires lots of equipment, which I have to jump through a lot of hoops to get.

I have also found that funding for early intervention programs and care attendant hours for children with special needs whose parents are in great need of some help is very limited and getting ever more so as congress cuts back each year. Why is special education in mainstream public schools such a problem (for a great blog on this check out Charles Fox)? Most school districts don’t want to pay for special needs education and nickel and dime and under deliver the child and parents ad nauseam.

It seems that the amount of support diminishes as the disabled person ages. There also seems to be a hierarchy of special needs that get funded. Blindness gets the most money and then deafness. I think brain damage and cerebral palsy are at the bottom. So the more disabled you are the less help you will get over the course of your lifetime.

There needs to be discussion about changing the system that has a dropping continuum of support based on the assumption that people with cp can only be helped up until age 3 or 4 or in child hood. The assumption also holds that the disabled have nothing to contribute and that they are a drain on the system. God this bothers me and couldn’t be less true. I have read so many blogs by disabled people who are absolutely brilliant but can’t get a job to literally save their lives. It’s so ass backwards.

It is the ignorance and discrimination towards the disabled that sets the back drop for the discussion about preemies and their outcomes whether it’s acknowledged openly or not. I think it is why the preemie myths prevail because we don’t want to deal with our ignorance on the whole of disability. I read on one blog of a disabled person that disability was most simply a matter of equal access to all parts of society. If there were equal access there would not be disability or racism or chauvinism or any number of isms.

Also it is important to realize that people with disabilities have a lot to offer the world and are often not given the chance.

It’s the mindset that needs to change.

When you have a child who then turns out to be disabled, your mind set is forced to change. And of course you love them. So there you are, loving this person who is different from most of your friends kids. But you think they are great and they are and they teach you so much and you change at the deepest level. This is the context I am coming from when I discuss Ellie and how great my life is because of her. Because of her I have learned a new language and with it gained an entirely new perspective I could not have understood any other way. I am so much better even for the wear and tear.

The scary part is that the backdrop for Ellie’s life is a world where the disabled are discriminated against - a lot. And that is terrifying to me. I want people to read our blog and be able to understand that disability has many faces and many gifts. This is not trying to make lemonade out of lemons – it’s just the truth.

Home

Home at last

Here are some pics of her from the Hospital. I think her head cloth makes her look the girl with the pearl earring, sans earring.

The good news is, it wasn’t seizure activity. The bad news is, that it is probably an issue with her eye muscles which we will be exploring with her ophthalmologist. More fun. Glad we are catching it early and so, so, so glad it’s not seizures or a shunt malfunction – both much worse things.

We came home and Ellie took a two-hour nap on Dada on the beloved couch and then we popped her in the also beloved B.A.T.H. Bath. She was delighted and a happy girl having Mama’s and Dada’s full and lavish attention. Her eye is still a little wonky at times but just knowing it’s not her brain seizing or getting injured due to hydrocephalus makes it a lot easier to handle. I worry for her vision – she is so visual. Will keep you posted.

Hope versus Facts from the Hospital

I began this post after thinking more about the current discussion and am finishing it at the hospital while Ellie naps. Her head is wrapped in gauze, underneath which are an array of metal pieces glued to her scalp. She just completed a night long EEG. She was having some neurological symptoms and her pediatrician sent us to the ER. The EEG was to try to catch these symptoms to determine if they were seizures or not. Not much luck but we are still waiting to hear the results of the EEG reading. The good news is her shunt is working fine – thank god.

In light of the discussion about hope and facts, here’s a story. Our roommates in the hospital are a father and his former 28.2 weeker who had a grade 4 IVH leading to hydrocephalus and in the course of events she contracted a devastating meningitis during a hospital stay. She is in surgery as I write this for a shunt revision. Her father is here and hands on and great with her. We were swapping stories. He lives out of state and said that when she was born his daughter’s pedi there released her from the hospital and his care saying she was not worth treating. So he and his wife and family drove to Boston and went to the ER here and that is how they got her cared for. I try not to swear on my blog – but WTF?! Their local doctor said it was against his ethics to treat their daughter. There is a law nicknamed the born alive law that makes this illegal - I think. I read that on the comments of a recent post in the preemie experiment. I will add the link in soon. It’s never simple is it?

Someone who recently found Ryn Tales did so through a search entitled hope and preemies. Yikes. It led me to a post from a mother of a 25 weeker who is two now and, per mother’s report, totally caught up. She said that hope sustained her through that experience. I believe her. Hope sustained me too after the shock wore off.

That post got me thinking about the amount of hope available to parents during a traumatic, unexpectedly early birth of a child followed by a prolonged NICU experience. In all honesty I want to clarify some things that may not be apparent from some of my comments on other blogs and from this blog. Though I meant every word in those comments and in my posts here I have not taken the time to detail our whole experience so that people reading our story would know the context of it all. I don’t know that at the moment I care to document here what happened in sequence. I have to tell that story so often to new doctors we encounter who take clinical notes while I tell the tale of how my baby’s universe was torn asunder and she fell into an abyss that she is still struggling to get out of. It’s painful. Retelling requires a certain amount of reliving, which is best to keep at a minimum. I am actually not that strong of a person. I don’t think I could do it all again.

That said, I don’t want to take away the hope of parents who might have found this blog from some NICU parent room while they are frantically searching to make sense of things and get up to speed on this new world they have entered. So here is some clarification for those of you who might have stumbled into my little universe.

I want to make it clear that the doctors in the NICU Ellie was born in were either neutral or doom and gloom – especially in the early days. They did not want us to have false hope. And for that I am glad. Having spent 133 days in the NICU I can also tell you there are phases to that experience ranging from shock and adrenaline to denial to acceptance and more shock and adrenaline thrown in for good measure every time something scary happens like a surgery or NEC or many of the other horrors preemies face in their NICU course.

During our NICU experience I, being at the very end of my Ph.D. program in organizational psychology, which included a good measure of social statistics, noticed a startling lack of statistical facts regarding outcomes of preemies. Dave and I went in search of them on our own but what I found was very disappointing in terms of statistical power. We read some in the neuro texts we bought, but being a psychologist trained in social statistics I was so UNIMPRESSED by the lack of power there. It seems a lot of neurology regarding preemies with brain bleeds is based on only several instances (sample sizes as low as 4). That was also 4 years ago. Hopefully the latest additions of the texts contain better info.

In the NICU we also participated in a study on cerebral spinal fluid to detect PVL by the same neuro doc who re-injured Ellie’s brain. We participated in the study because we felt if we didn’t they would hold it against us and not treat Ellie as well as possible. That is how desperate you get in the NICU and how close your child it to death. When the study results came back the doctors – this was two months in – urged us to sign a DNR. This would have meant that we let Ellie drown in her own secretions. We were horrified. I also believe that the neurosurgeon there wrote Ellie off and on some unconscious level gave her sub par care in the form of not checking ALL her ventricle to see if the shunt was working – which it wasn’t. Then to fix it he did an experimental surgery that only served to injure her brain more so that now her eyes and vision were affected. When he gave me the results of the study I read the statistics and could easily argue that they were very weak.

My point in bringing this up is I wish we had heard more substantial facts in the NICU. We heard a lot of speculation to the negative from the doctors though the really good docs did admit to not knowing. The “I don’t know” comments actually gave me the most hope and I so totally to this day appreciate their honesty. I thought, hey if they don’t know, I will just have to hope for the best. Which I did and still do as that is also my job as Ellie’s mother. If I don’t believe in her and set the bar high, who will? This is not to say I don’t realistically deal with her where she is at and love her for who she is. But at the end of the day I believe in her and have hope for her.

Lastly here are some different types of Hope:

Gut level knowing hope: This is great when it comes though is prone to second guessing by the mind. It’s your inner intuition letting you know to have hope and that you will be able deal with the outcome. Please do not confuse this with that profoundly different cliché that states “you are never given more than you can handle” which I think is total bullshit. If that were the case you wouldn’t hear those horror stories of mother’s killing their children.

Hope from denial: it’s not realistic but keeps you from cracking up during times of great stress. When it comes from within it’s a survival mechanism important to maintaining your psyche. But like all the phases of grief you need to pass through it. I have noticed the grief cycle has many little cycles along the way especially in a life with a child with multiple disabilities. It’s not like you face denial once and have done with it. No, I have faced it over and over with every new understanding of Ellie’s issues. For Ellie’s sake I have to make myself move through the, “No she does not have seizures. No, she’s not a seizure kid.” To fuck sake, she’s got seizures let’s figure out how to deal with them the best way possible. Sorry for the swearing, but it was a long night. It’s never static just like cerebral palsy is not static. (It’s not degenerative but it does change it’s presentation especially when a child grows. Nothing static about that.)

So to the doctors who told us, “well at least it won’t get worse” that is totally not true. Sometimes it does get worse and there are new difficult things to deal with all the time.

False hope: This is the worst especially if doctors do it. It’s a major error and only sets you up to deal with the pain of reality at a later date and make mistakes in the present.

Write you off hope: This sucks too. It’s when someone tells you something positive to avoid telling you something negative or to avoid dealing with you at all. When Ellie was born I can’t tell you the number of people, some I thought were friends, who told me, “oh, I know a preemie and they are fine. She’ll be just fine.” And then you never hear from them again, because you see they are immersed in the preemie myth and don’t need to worry about you anymore.

Realistic hope in light of the facts: This is the best and what I tried to create for myself during the NICU course and now in my day to day. I then temper the difficult facts I learn with a wait and see attitude to keep my sanity. I want to be aware of the all the things Ellie is facing so I can help her. “Watch the baby!” Is what my favorite NICU doc told us. Thanks for that one D. I still am, and she is beautiful.

We had a ton of very competent help in the NICU. The majority of the doctors were excellent, there were many amazing nurses and therapists who became part of our little family and we met some of the most courageous and admirable parents who have now become life long friends. I felt too that sometimes the doctors come to adore some families and babies and want good things to happen to them. This is the human condition. I’d take a doc like that any day over the docs who wanted us to sign the DNR.

I don’t think it is for the doctors or the state to say who should be saved or not. I think it is the parent’s choice. The problem comes in when parents don’t have adequate information to make informed choices. This murkey ethical pool is further convoluted by prevailing preemie myths which also add great pressure and difficulty on parents who need make life and death choices for their child especially if the choice is to let the baby pass away.

Deepest Fears, knowing too much, positive thoughts

I have been blog hopping lately to some new places in the blogosphere. It’s all Jacqui’s fault for making me think about this and having such interesting friends/links.

The journalist reporting on the story of the 21 weeker is either misinformed, receiving bad information or not understanding the information s/he is receiving to imply that the child will come away from the whole thing unscathed.

I have been reading more preemie stories here and here, here and here. I am inspired by the mom’s in each of these blogs as well as by Jacqui. It’s good to see how other parents are confronting the issues we face. I learn a lot from each of them and take courage in their tenacity and humor in the face of the unknown.

I have also been reading neonatologist’s blogs here, here, and here. I am glad to be aware of them. But after a few days of taking in all this new information in this new vista of the blogosphere I have discovered I am quite full. Full as in you have just spent a couple of hours in la Louvre and need to lie down. Too. Much. Information. Must. Shut. Down. Now. System. Overload.

Here is my question to my vast readership of 10: Is it bad to know too much? Is it good to follow these debates and be so informed, especially since I can’t change the past and am committed to the path we are on? Is it? I would love to hear your opinion on that.


But – gaaaawwwwddd. Reading these discussions scares the crap out of me. And for the record, I think doctors and the press could do a heck of a lot better job at painting a true and detailed picture of sequalea of hypoxic-ischemic encephalopathy and of prematurity. But once you are where we are, four years plus in, is it really good to know so much?

I am blogging about this however because there are some major problems when it comes to prematurity.

#1 is the myth that preemies mostly do ok and actually have gifts like being extra musical, extra smart, extra wise. We heard all of that crap in the NICU. I have never found any study to bear any of these out. I have mostly seen many preemies with mild to severe issues especially cerebral palsy. Other supporting myths for the greatness of the preemie experience are examples of famous preemies like Albert Einstein. I have no idea if that is true but if it is he is a very rare case and he most likely had
Asperger’s Syndrome.

#2 Because of #1. preemies and parents who do not have good outcomes are certainly not spotlighted as much in the media or even thought of as important voices in hospital systems and their parent support groups as are the parents of preemies who did great in their NICU course and then go on to "catch up". Why are we so unrealistic about preemies? Maybe it’s human nature to want to focus on the positive examples and ignore, deny, shunt away a reality that is not so positive. Maybe insurance would not just give NICU's the green light when it comes to their tiny patients of the statistics were better known?

#3 Because of #2 many parents of preemies don’t get the support they need from their communities. When Ellie was born I can’t count the number of people reassured me all would be well because they knew of an adult preemie who turned out just fine. They did not mean this is in a "so what is your problem way?" but it did give me a lot of unrealistic expectations followed by guilt over the fact that things were clearly not just fine. Also, the head job #2 does on the parents can be debilitating in terms of them facing up to the reality of their child's issues and even feeling like they can ask for and do deserve help.

There it is. How does sadness and fear of the future and the current fatigue (the GSTTN have been kicking my ass this week) help me get through the day? Not at all.

Enter positive thinking 101 survival technique. An acquaintance of mine just posted an entry on another blog we both contribute to about his happy life and mental discipline of replacing any and all negative thoughts with positive ones, for example something he is grateful for. This in theory and in practice is an awesome thing to do. I’ve known him for a long time and he always exudes this sense of self that is both uplifting and rock solid. Discipline is the only ways to achieve that as this world is designed to separate the individual from such things.

Here is my grateful and positive thought that I am going to use to remind myself in the face of my deepest fears regarding our life and Ellie’s future:

I love these two lovely and amazing people that love me back every day unconditionally. That’s alotta love going on. It’s pretty cool and something I never had before on a daily basis. On top of that they are both really cute and funny and sweet and even think I am great. Life before them, though it looked pretty successful from the outside (education, job, career, health) was in actuality pretty lonely on the inside.

And this is not a rationalization. For the few friends of mine that read Ryn Tales and know my background and travails growing up it will make the most sense.

I hope this post offers some resources to understand the true outcomes of prematurity. I also hope that anyone reading this will understand, that having a preemie who then becomes a child with multiple disabilities is not the end of the world. It is entering into a new one with new challenges and many things to learn. That is the, please don't feel sorry for us part. And though I would not wish the experience on anyone, you could do it too if you had to. Finding that you have that kind of inner strength is pretty incredible.

It's Official: We're Batshit Insane

Ah, there's nothing better than a man who knows how to handle a drill.

What is a three day weekend for if not to work on your ramshackle house? Yay for us! Yay for our initiative and optimism and courage in the face of the unknown. We are laying down a hardwood floor in our sixteen by thirty one foot kitchen/everything room. (I can't bear to tell you how many square feet that is as I may need to be medicated if I do.)

We have said a sad farewell to the plywood we had been living on for almost three years. The impetus for this farewell - the humongous splinter I sustained in my heal just minutes before the decision to finally finish the floor was made. Yes, that was how the madness began. Does blood poisoning set in that quickly? Maybe I just have a fast metabolism.

Dave and I are nothing if not spontaneous - this has it's pros and cons. Dave procured the wood through all manner of financial magic and space shifting to get 25 bundles of it home in our car. We (mostly him) started on the task. Sanding down rough edges, laying down red resin paper, figuring out how to make the whole thing straight so you don't feel dizzy when you look at it. Dave is a wizard to have figured this out in our 1935 wonder house where not a straight line or right angle has made an appearance since original beams were milled.

See the bit of white along the wall - that was my handy spacko work. I think we have already saved about $200 dollars on the heat we haven't lost. Why we did not think of that one three years ago I will never know.

However, spontaneity has its price and we are not two single people on for the task. No, we have a kid - you might have notice the beauty with the blond curls and most pinchable cheeks on the planet. Yes, well, said child doesn't just disappear because we have suddenly lost our sense of reason and decided to take on a huge task. So, since Dave is only slightly more handy than me, cough,cough, I would be the one to hang out with Ellie. No problem there, she's great company. But Dave quickly found out that laying down a hardwood floor is more of a two person job than we first envisioned. That same vision included finishing putting down the boards on day 2 and then doing the finish each night. See what I mean about having lost our minds?

Another price of spontineaity is that the few people we asked for help were unavailable. Yes, they are snug by their cozy fires, sipping their drink of choice, very happy that they had other plans. But we must have had some good karma due to us because this man showed up on the scene day one and day two. P is officially in my good books - FOREVER. He has made all the difference and single-handedly saved us from the abyss.

Stay tuned for more pics as the hardwood rules over the plywood splintered sub floor. We should be done in several months...

Finding Hope

Hope is a thing that we must tap into however and whenever we can. Be it through a muse who inspire us, a loved one who encourages us, a stranger who enlightens us, or we simply find evidence contrary to our greatest dissappointment.

To this end I offer you this brilliance from Marianne Williamson (though in cybermythology this is often credited to Nelson Mandela):

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous?

Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It's not just in some of us, it's in everyone.

And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

From Marianne Williamson, Return to Love (1992, hardcover p. 165, paperback pp. 190-191): http://www.marianne.com/index.php

Many beautiful things all about Ellie – an update

Ever since I found Clare’s blog about thinking of three beautiful things, I have been inspired to do that each day. Clare is way better at actually sharing those things with the world and hence the popularity of her website. But since so many things have built up from this daily practice I wanted to give all the people who love Ellie an update – a bit over due I know.

Seizure Update
She is tired because we upped her dose of Depakane but still very active. It usually takes a week or more for her body to address. We will get her levels tested next Wednesday and if it’s high call her doctor and discuss lowering the dose. We met with Ellie’s neurologist last Wednesday and she was really pleased to see Ellie doing so well. I asked her about getting oxygen in the home in case Ellie had another seizure and she said that would only be necessary if Ellie had a prolonged seizure. I asked what “prolonged” meant and she said one hour with the child turning blue. Honestly, I think I would die first if that ever happened. Ellie certainly was pale but not blue and her 10 minute seizure was the most excruciating 10 minutes I have experienced since her birth. Of course the nagging question in the back of my mind regarding all that is - so you have to wait until someone, my child, is actually having an anoxic event to give oxygen? Something. Does. Not. Compute. Just the same, Ellie has been seizure free since our incident on New Year’s Eve and that is a beautiful thing.

Gross Motor Skills
Ellie is rolling all the time now to get things. She was doing this before the seizures started to mess with her last May and then stopped. But now she is a powerhouse again and we are having to move stuff and take the child proofing to a new level. She is also spending some time in her stander which you can see here. She doesn’t complain though the thing is hard to get her in to and I worry every minute she is in it what it is doing to her spine. I worry so much about that, that I don’t put her in it. Dave does once in awhile and I think that is enough. I have been doing as much tummy time as possible to compensate for the stress on her spine. The great thing is that she is fighting me less on the tummy time – which I have to say she readily does for everyone else. But when it comes to me it’s Mama’s lap only please. I guess I should enjoy that while it lasts ;-)

The Scotson Technique (TST) Therapy: reality check
I thought when we got back from England that I would be doing 3 hours of therapy with Ellie per day. But after really understanding the exercises it will work out to 2 hours per day. This is a relief, especially since she will be starting school. Currently we are on our third week of doing them as we took time off because she had the pneumonia. I am doing them with her one hour a day and on Monday will be ramping up to two hours per day. I wanted to start slow and at first Ellie was a bit pale. I am breaking them up into half hour segments. I am finding innovative ways to be able to do them without needing someone else to spot my wiggle girl who does not prefer to stay still before 8pm. One way is to put a soft pillow over my legs and let her lay over the pillow on her tummy. This way she can’t fall over and I can do the exercises on her. That said, 6 mornings per week, Dave and I get up with her and do exercises for 30 minutes. In truth, I really love our mornings. Ellie is happy because she has Mama’s and Dada’s full attention and we all start our day together connected and focused on helping Ellie’s brain heal. Throw in a little Pete’s Arabian Mocha Java and I can even temporarily negate debt I just paid to the GSTTN – ha!

Nutrition and Diet
We met with Ellie’s GI doc and he was thrilled because she gained 11 kilos in 3 months time. I have detailed her diet and my approach to nutrition here and here and here and here. I have been experimenting with adding a little more variety into her diet. I tried making dark meat turkey soup and could smell the acid on Ellie’s breath right away after a couple of days of this. I tried her on avocado and again she was acidic. When I say acidic, I mean that her voice gets hoarse and I can actually smell acid on her breath – like when you have indigestion. I will try to give her a little avocado from time to time but only in teaspoon portion sizes. There are so many GREAT nutrients in avocado – but it is an incredibly rich food as well, which is hard on Ellie’s system.

The whey protein we bought while at Advance is still proving to be easy for her to digest and I wonder if it is what is behind the increased rolling and energy. I also am giving her two cooked egg yolks 2-3 times per week and that does not seem to be causing her any trouble either. I am too chicken at the moment to try the whites…

I tried her on banana allured by it’s naturally high potassium and other nutrients. Ellie communicated to me before I gave it to her that she did not want it – even in her g-tube. See how she is developing?! I gave it to her anyway, being the horrible, nasty mother I am, and she did not do well digesting it. I really believe the body has an innate intelligence about what is good for it. I know a few people who do muscle testing to tap into this innate intelligence. But how do you do that on a child with hypotonia? And, as any mother knows, it’s hard to get a straight answer out of a 4 year old, especially my Ellie who tries daily to convince me her nanny lives at the North Pole. Sigh. But in this case, it was her body’s innate intelligence telling her, no banana please – too rich. I should have listened.

In my unending quest to get live enzymes into her (she whose sensory issues make her gag on hard foods and who is currently refusing all food by mouth) I am going to try organic grapes. Tomorrow I am going to blend up 3-4 in water and give her those (And yes, I will probably peel them – go-ahead roll your eyes. Mine are rolling as I write this.) She continues to get the fresh carrot; beat; ginger juice cut with a lot of water and that is going down fine- plenty of great enzymes there but a bit of a PITA (pain in the ass) to deal with the juicer every day. (If you juicing fresh vegetables you need to drink the juice right away as enzymes die with each minute that ticks by after the juicing process. This is why I don’t juice up a bunch of veggies and pop them in the fridge and hope for the same benefits for those of you who might have thought of this as a solution.)

Interestingly, the Nanny Goat formula we have been giving her has started to make her sneeze and get a little runny nose every time I give it to her. I think this is a sign of lactose intolerance but I am wondering why it just suddenly came on. Solving this mystery will involve learning something new about the body, which is always good. If anyone has any insights about this – do share them and thanks in advance.

In sum, Ellie’s blood results came back (CBC) showing that she is not vitamin deficient and she is gaining weight and growing at a good pace. I am happy to see her energy levels rising slowly despite the increased seizure med.

Eating by Mouth
She is still refusing to eat for me full stop, though she can and will just a little for her beloved Bonnie. The beautiful thing is that Dr. Soul (how cool a name is that?) when I told her this noted that Ellie was asserting her independence. This was a great realization for me and is exactly what Ellie should be doing at this age. I basically stopped sizing Ellie up against where child development specialists say she “should be” because it just doesn’t apply and got to be a bit painful. I find it more useful to understand her for where she is at and work from there only comparing to where she was. But still, it’s nice every now and then when I discover she is on target or even ahead in some small way. I’m not sure a parent of a typically developing child can truly understand how such a small thing as this revelation delivered to me via Dr. Soul is such a ray of hope and will keep me going for a long while. But there it is, Ellie asserting her independence. Hurray!

School Update: best for last
We heard back from the school (I mentioned here) and that I wrote an essay for and spent hours on the phone with and sent stacks of paperwork to and finally visited…. Drum roll please…..

They ACCEPTED her! For those of you who actually heard screaming 2 Fridays ago round 6ish, yes, that was me after I received this incredible news. We met with them the Tuesday before and it was obvious to us that they totally get it. The teachers and therapists we met were clearly there because they are passionate about the kids. They communicated with Ellie in such a way that gave Ellie time to process and respond – without us telling them what she needed. Ellie even reached out to touch one of the other kids. The school was clean and bright and calm. We were there for 3 hours and left with no concern other than hoping they would accept her. I am measuring my high hopes with a dose of wait and see. She is to start in March and a lot of details have to be worked out with our school district, which is why I was hesitant to report his great news. But now that a little time has passed and all is still a go – time to share our good news. It’s always excellent to have something good happen for someone you love especially when she has been through so much. In fact, it’s a beautiful thing.

Musings of Weetabix: a thin slice of our life

Me: Thanks bebe, that salad hit the spot

Hubby: Yes, pesto is so versatile; you can eat it with a lot of things

Me: Ya, it’s great

Hubby: Hmmm. You could nearly eat it with Weetabix (looks thoughtfully at the microwave)

Me: Eeeuuuwww! Weetabix with milk and sugar microwaved into a mealy mush is bad enough, but with pesto?

Hubby: Do you know the Irish eat more cereal than any other country on earth?

Me: That explains a great deal.

Surrendering to the GSTTN

Ellie would have been officially 4 had she made it to her due date on February 4th. I like to point that out to myself every so often in light of her achievements. They told us that most preemies catch up by age 3 but that is about as likely as a bad student, good ol boy, dumbass like George Bush becoming President. Well, ok – it happens sometimes. But with Ellie at 24 pounds and 36 inches and still waking up at night – it’s not our case.

In the spirit of sizing up where I am at I got to thinking about sleep, probably because I haven’t had much lately. Which incidentally makes me forgetful and about as efficient as a carpenter ant on LSD. In an effort to become sanguine with the state of my sleep deficit I decided to tally it up.

Here are my calculations:

In an ideal world where children go to bed at 7:30, sleep through the night and then play quietly and happily in their beds until 9am or 10am needing no assistance I would get 8 hours of sleep per night from roughly midnight or 1am to 9am. You see I am a night owl and the whole get up before nine thing go to bed before midnight thing just continuously messes up all my circadian rhythms. But anyway – in this ideal fantasy land where Al Gore was not cheated out of his popular vote winning Presidency – I would get roughly 2,920 hours of sleep per year. Ah – to dream and sleep and let all my internal organs have a break from the churn of daily life….

In reality where Bush is President, Gore grew a beard and hid out in academia and all hell broke loose in wars and global warming everywhere – I average about 5 hours of sleep per night. That means on my night where I get up with Ellie several times I may get one or two stretches of sleep. On nights where dear sweet husband gets up with her I get more sleep but still wake up because I can never sleep through when I hear her – it’s a mom thing. I think even averaging it out to 5 hours per night is a bit generous. But we’ll leave it at that. Which means that in 4 years time, since Lady Muck arrived, I have racked up a sleep deficit of roughly 4,380 hours.

I have read that to catch up on a sleep deficit it’s an hour to hour ratio meaning you can’t take a 10 minute power nap and think it wipes out a few hours. NO. It’s hour for hour like Hammurabi’s Code – an eye for an eye. Like I said, the Gods of Sleep Through the Night (GSTTN) are ruthless and very exacting being the sons of the Gods of No Sleep (GNS). So in the spirit of staying positive and being proactive in dealing with this deficit I thought I could do these things:

Take a two hour nap every day for the next 12 years – one hour for the current sleep deficit and one hour for the ongoing deficit. After 12 years I would only have to take an hour nap per day to stay sleep deficit free (unless Ellie is sleeping through the night by then- don't read that too loudly ok?)

Take 24 five-minute cat naps per day.

Sleep an extra 12 hours per day for one year.

Sleep an extra 3 hours per night for 4 years.

I don’t think I will ever catch up on my sleep deficit. This is why the GSTTN and the GNS are such a wealthy lot. They already have 4,000+ hours of my sleep. They have shining skin and are very Zen in their approach to torturing parents – unrushed and unperturbed. They are calm and clear minded.

Any suggestions? How are you managing your sleep deficit?

A must read for anyone dealing with IEPs and other fun stuff

I have to say that Charles Fox and company over at the Special Education Law Blog have once again given a voice to an issue that is critical to address for the well being of all children with disability attending school. The use of negative labeling and loaded language reflected in IEPs (Individual Development Plans) demonstrates and propagates a lack of understanding into the behavior of disabled children and people who communicate and act differently.

Two months ago in our final IEP discussion we experienced tension over words used in it that negatively labeled Ellie. We were concerned that any school staff member reading Ellie's IEP in order to understand her would instead be set up to assume she was misbehaving and a difficult child. At the end of the day most of the language was changed because we refused to sign it until it was. That conversation did not go so well - let's just leave it at that...

Here is an excerpt from the Fox post which ends with a practical check list I wish all teachers and school staff had tattooed on their arms:

Avoid use of all charged language like manipulative and intentional. It is rare that children with special needs have a plan and a design that they are following through on to upset the class. The adjectives do nothing to further the discussion and tend to polarize the parties.

I wish Charles had written this a couple of months earlier before we had that difficult meeting. It's a great post and you can read it here.

Lessons Learned

Lesson #1: Never name or thank or acknowledge the Gods of Sleep Through The Night (GSTTN) EVER! (Like I did here.) They really don't appreciate it and prefer to stay anonymous and therefore avoid all responsibility and maintain their mysterious ways.

Lesson #2: The GSTTN are a vindictive lot and don't play nice - so refer to Lesson 1.