Grief in the Joy of Life

I have been struggling to post lately. But that’s what I do. When things are really bad inside, I disappear. This blog is a way to be present in my life. For some days now it has been hard to be present. It’s not that life is so bad or hard. It’s more the pain of living in general, the pain of having an open heart. Lots of things can rip open a heart that is slightly closed or just not as open as it could be. One is grief.

Lately I have been grieving. We finally found out why, why, why Ellie was born so early under such violent conditions. It has taken several doctors and 4 years to finally put the mystery together. With the answers I can no longer blame myself and I cannot responsibly try for another pregnancy either. That is a sad thing to suddenly find out your child bearing years are over. As unbelievable as this may sound, I am so incredibly grateful to have gotten to carry Ellie as long as I could. I am even more grateful that we are both still here to share our life together as mother and daughter.

When an answer comes to a question that has been asked for so so long it is like being immersed in cold water that makes you immediately numb. I suppose this is the way the body protects itself from death or the mind’s way of insulating itself from insanity. Numbness. Nothingness. Stuffing pain down into the cold water of shock while one cheerfully gets on with their day to day or snaps at their poor sweet husband.

This is what I have been doing on and off since mid December. All my dreams of carrying another baby and “doing it right this time” have been decimated by the truth that if I do the doctors assure me I will most likely die and take the baby with me. The best case scenario is a repeat of what happened with Ellie. That would be completely irresponsible on my part. So that’s it. There you have it. Grief come on down and do your thing.

I first learned about grief when my Nana Helen died. She was the first person I felt consistently and unconditionally loved by. She was amazing in her ability to transcend an incredibly difficult childhood to become wise. She is the reason I went on and slogged it through my own really awful childhood. She died when I was 21 leaving me to face grief alone. Newfound grief is the worst. I have found over the years that when grief comes, and it does, in its own unpredictable way, it is bittersweet and not so life threatening as when it is new. It comes on a whiff of wintergreen lifesaver and there is Nana in her gloves sitting next to me on a long car ride slipping me a wintergreen lifesaver with a twinkle in her eye and an arm around my small shoulders. I contemplate my paten leather clad feet that don’t reach to the end of the seat and am happy to be near her. No car seats in those days.

Life has its twists and turns and sucker punches and joys and love. It’s a mixed bag. I look at Ellie now and even more than before, when I did not know why, thank God for the miracle of her having survived, for getting to carry her and bond with her in that way a mother does. What a huge gift in light of its impossibility. If we are not here to unfold as souls and to learn to love more and find true compassion, why are we here? Ellie teaches me about both each day. Grief enriches the whole thing and reminds me to be thankful for what is in the here and now – which is a lot.

Hope your week has been better than mine...

But if it hasn't, this picture is for you!

This coming week is National Mental Health Care week. You can do your part by remembering to contact at least one unstable person to show you care.

Morning has broken...

Ellie's fever finally broke last night and with it her appetite returned. She is still coughing a lot, but not every waking moment, and is still tired and snotty but definitely on the mend. She is playing more and in good spirits. The antibiotics seem to be working which is good because I hate giving her antibiotics, especially before it was established that her pneumonia was bacterial or viral.

Here are the others things I have been giving her to help her fight the pneumonia and heal:

1. Essential Oils of eucalyptus and lavender and frankincense in her humidifier. The eucalyptus helps to open her airways and lungs. Lavender because it is especially anti viral and helps her relax, and frankincense because that is what my gut told me to give her. We had been using frankincense (one drop to 3 drops olive oil) on her feet because it brings oxygen to the brain as it is a turpenoid (not sure I have spelled that right). I am not sure if it is helping here, but my inner voice kept telling me to put it in her humidifier last night so I did. If you don’t know what an inner voice is, first of all I am so sorry for you, second of all, don’t worry because your are probably hearing it all the time, especially when you are about to do something you should not. So just listen up and you will find yours quite useful.

A word on essential oils:

My friend Pey, who is an excellent aroma-therapist, advised me to only give them to Ellie 6 days a week and then give her a rest. They are pretty intense and you never put them on a child directly or internally! Dilute, dilute, dilute! This is why they go in her humidifier and just a few drops are necessary.

If you are buying them, make sure they are organic and wild crafted. Whole Foods carries some commercial brands, but these lose their effectiveness in the mass production. Essential oils effect a person’s energy and body and emotions. In the US I get them from my friend Kerry at Useful Weeds. You can also order them for Materia Aromatica in the UK.

2. Freshly squeezed vegetable juices: carrot, beet, ginger, garlic juice once a day and given directly after being juiced. All of these provide live enzymes to help her system overall. The ginger will help her body burn out the infection in her lungs and garlic, especially fresh squeezed is an excellent antiviral, antibacterial, anti fungal, anti most bad stuff that effects the body. If I weren’t chickenshit I could have just tried giving Ellie these things instead of the antibiotic. But I am chickenshit and did want to experiment on her in this way especially since she was so sick. NOTE: The first day on the juices I used 1/3 freshly juiced combo as described above to 2/3 filtered water. Two days after that I used a 50/50 ratio. I cut the juice because this combination is very strong for a child.

3. Stopped giving her the goat's milk formula she normally gets as it was making her too gunky as most milk products are phlegm inducing.

4. Giving her the whey protein I described here. I am happy to report she is doing great on it. Even though whey is a derivative of milk - remember curds and whey - it does not contain lactic acid which is the thing in milk responsible for making people allergic to it, phlegm being one of the major symptoms of lactose intolerance.

5. Chest PT – meaning with a cupped hand you tap her rib cage in order to loosen up the phlegm in her lungs. The nurses showed me how to do this. I am so glad to have the nursing care when Ellie is sick because, especially in this instance, it is the only thing keeping us out of the hospital.

6. Red Lentil, beet, carrot, garlic soup – very watered down for some easy to digest and nutrient rich calories and more garlic.

7. Water and more water as well as watered down cereal. When Ellie was going through the worst of this on Monday and Tuesday she could not handle any solids and her system just needed fluids to keep all that phlegm moving up and out.

8. Tylenol Infant Drops. See, I walked both paths here – allopathic and naturopathic. Sacrilege I know, but she was in pain and coughing constantly and when her fever got up there I gave it to her and she was able to sleep. I was also able to sleep without the fear that her fever would get high during the night without me knowing it.

9. Flovent. The doctors prescribed this steroid to help open up her lungs and bring up the phlegm. It works even though it is difficult to administer.

10. Lots of hugs and love and sleep. I have been covered in Ellie who could only stop coughing if she were on her side on my chest. So there we were for a couple of days. I have never been covered in so much snot since I was probably her age. Sigh.

I am very happy to say that she is doing much, much better and able to laugh once again even though it makes her cough, which is a good thing to get all the “yuckies” out of her lungs.

Here are some more pictures of our trip. The first pic is of Ellie all dressed in a red velvet dress at her Nanny’s wedding. Someone else asked me what the hyperbaric tank looked like and you can see it here with Column (sorry to misspell your name!) Column volunteers his time to run the chamber for Advance. He is an ex-diver among other things. I think he is also an ex- 007 type, but he won’t admit to it. There are 3-4 gentlemen at Advance who volunteer their time to help out with the Hyperbaric chamber. Thanks to all of them. The last picture is of Ellie and Great Grandmother Bridie. Bridie is having a little "nurse" with Ellie. "Nurse" being the Irish phrase for having a snuggle. Ellie loves being the center of attention and getting lots of love from all manner of Grannies, Grandpas, Aunties and Uncles and Great Uncles and cousins in Ireland when we visit her family there. Wish we weren't so far away.

Disclaimer: These are the things I am doing to help Ellie get better but I am not writing this post to recommend these things for anyone else. Work with your own medical or naturopathic practitioners and your own inner guidance to help your child or yourself. I am just a mom when it comes to this, not an expert. This post might give you some helpful ideas but that is all it is intended to do as well as to let everyone who cares know that our little warrior princess has conquered pneumonia (because she so rocks!).

Oxygen On Planes or Why We Are Boycotting AA

Dave and I have been going back and forth about getting Ellie oxygen whenever she has to fly anywhere but especially to Advance for therapy. Flying is hard on her as it is on everyone at a high altitude with low oxygen. Every time we arrive at Advance or in Ireland it takes Ellie at least 2 weeks to recover. She is tired and pale and needs to sleep a lot and is not as bright and interactive as she usually is. Linda has been telling us that if we get her oxygen it will reduce her jetlag and will allow her to better assess Ellie as well as help Ellie get more out of the therapy. Linda prescribes exercises based on her evaluation of Ellie and it's hard to evaluate one who is exhausted from jet lag. Linda, as with all the things she recommends, takes her own advice. She uses oxygen every time she flys. She is opening up centers in South Africa and the Philippines and sees many families when she goes there with no extra time for fatigue and jetlag. After our big Scare with Ellie having a seizure as I described here, this time we decided that for our flight back we would request to buy some oxygen for her on the plane. We were flying American Airlines.

Dave called the English branch of American Airlines 2 days before we were to leave. They told him that they needed 72 hours notice for oxygen on planes and that since we had broached the subject at all they would now have to have one of their doctors examine Ellie to determine if they should let us fly at all. Dave tried explaining that it wasn’t medically necessary for Ellie to have oxygen on the plane but that it would help her with the jet lag at home. The airline representative he spoke with said that they would want one of their doctors to examine Ellie at check in, in order for her to fly. Dave said this was ok.

Great huh!

We arrived at Heathrow 3 hours before our flight and went to the check in. Alice, the American employee at the desk, started the check in process. In under a minute there was a problem. She asked for our medical release form. We asked what medical release form. She then, looking very put out, informed us that we needed one from a doctor for American to let Ellie on the flight. We said we didn't have one and that on the phone American Airline personnel told us if they needed to examine Ellie there would be a doctor here at the airport. Her response was, "Well I don’t know anything about that but, you're not flying today." We explained that we were only visiting England and did not have a doctor here. We tried explaining that it wasn't medically necessary for Ellie to have oxygen but only nice to have it in order to speed her recovery at home.

Alice was unmoved and by the pinched sour expression on her face getting more annoyed by the minute. She told us that we would not be flying today again. At this point I, ah, kind of lost it. I told her I wanted to speak to her supervisor immediatley. And I mentioned that if we were stranded in Heathrow with limited medication, diapers, and food for Ellie I would sue the airline for all it was worth.

Her supervisor came out pretty quickly and after a rather heated discussion took our case to their medical people whom we never saw. We cooled our heals by the check in desk and waited for 20 minutes. The supervisor came back and asked us a little about Ellie’s condition and we assured her Ellie had never had any trouble flying. She came back 10 minutes later and said we had been cleared to fly. She also informed us that if Ellie needed oxygen on the plane while in the air they would have to divert the flight.

This whole story was unbelievable to our friends at Advance as British Airways understands the need for oxygen on the plane and will gladly sell it to you. Virgin Atlantic gives it to you for free.

After this incident this same supervisor was very kind to us getting us on the plane first and out of her hair. That said, we won't be flying American Airlines again. Clearly the fact that one AA employee could tell us on the phone that there would be a doctor at the check in and then Alice never having heard of this shows that they did not have a policy in place to deal with this. Had they told Dave on the phone that we needed a medical release form from a doctor, at that point, two days before our flight we would have been able to get one. This is not the first time I have experienced their very poor customer service when it comes to someone needing physical assistance. On this trip for instance, we let them know that though we had Ellie in a stroller versus her wheelchair that she can’t walk and that we need to bring her stroller to the gate. This was fine but upon deplaning in Boston there was no stroller at the door and the employees on the ramp told us we had to go down stairs to get it. As it turns out down stairs meant baggage claim. We had to walk miles and wait in a long passport check line with no stroller. The stroller arrived in the baggage claim. What’s up with that?! When I was 6 months pregnant with Ellie I was flying for my company. I was having trouble lifting my case into the overhead. There was an airhostess coming down the aisle towards me. I asked her if she could give me a hand - I had my case midway there. She said if I was unable to manage my carry on I would have to get off the plane. And then proceeded not to help me but stare at me as if I had two heads. It was humiliating.

So you see, I have had it with them and won't fly with them again. Not to mention that on the way there we were in some sort of twilight zone of a seating arrangement such that when the person in front of us put back their chair the seat was literally 3 inches from your face. Very difficult to hold a Hypotonic child in this position.

So, sorry American, but you won't be getting our business anymore. And for the record, Alice should really go to customer service training.

Rocky Landing Ramble

Ellie's stuffy nose that she has had for a couple of weeks turned into a persistent cough and now pneumonia. She is now on antibiotics and an inhaler. She is generating more snot than her little body looks capable of. When she is not sleeping between coughing fits she wants to play. Play with everything. It's like she feels she is sleeping during normal play time and has to make up for it. But her cheeks are rosy and she seems to be fighting "it".

Sigh. What does this mean for 2007?

This reminds me of my birthday superstition. Every birthday I try to fill my day with all the things I want to have lots of during the year. For example, it's great to have a consulting gig on that day, some good food, good exercise like yoga, and time with friends and of course sex. As my superstition dictates - this will ensure a year with all of these things present.

So if you get sick at the start of a year is it going to be a bad year?

See that's the thing about superstitions - they are just mental games that ease one's anxiety over the fact that we can't predict the future and most of the time we don't know what the heck is going to happen next. It's not like when I am reading a novel and one of the characters gets into trouble so I peek ahead and make sure they are still in the book. Ever done that? Yes. Can't do that in life though. I have had lots of dreams that have come true. And some deja vus that were pretty convincing but when I am most worried I can summon up nothing. None of that wonderful intuition I have regarding anything I am not stressed out about or care too much for. It's a bummer. Surrender can be so difficult at times.

What a long strange trip it has been

We arrived back from England and Advance on Thursday – exhausted. Our trip had two key purposes. 1 – Go to Advance for more therapy for Ellie. 2- Attend Dave’s mother’s wedding in Dublin where I was also the photographer. (Obviously his mom and step dad are a bit nuts but the pics actually turned out well). Ellie, is normally a great traveler. On this trip she was her usual self - happy and excited to get Mama and Dada in close proximity for hours at a time. She is even able to catch some z’s on planes and in her stroller which reclines back. This is definitely something she inherited from her father. But for the first time, we flew to Ireland via Heathrow to save money and use up the last of my road warrior air miles on American Airlines. Usually we fly straight to Dublin. This leg to Heathrow made our trip 6 hours longer than it normally is and the high winds caused even more delays. By the time we were on the flight from England to Dublin we were all exhausted – especially Ellie. We arrived at Dave’s mom’s house, gave Ellie a meal and then Ellie and Dave lay down for a nap. I joined them about 30 minutes into it after a bit of organizing. As I lay down beside Ellie, she turned to me and tried to sit up. She was pale gray and her right arm was pumping, hand fisted and hitting her head. She was trying to get to me. She was having the worst seizure she has had since her time in the NICU.

After a couple of minutes of this, I got the emergency seizure kit (Diastat) and gave it to her. The kit says you are supposed to wait for 5 minutes but this was a big seizure for Ellie so I did not wait. For another 7 minutes she was seizing. Dave’s mom called the ambulance. Ellie finally stopped seizing after a total of 10 minutes. I had her on her side as the folks on the emergency medical line instructed. I was talking to her and crying at the same time. She was reaching out and grabbing my hand. And gently reaching for her Nanny’s necklace. It was as if to reassure us that she was going to be ok. The ambulance arrived very quickly and they gave her oxygen and rushed her and us to the hospital. While the ER team was a little disorganized and had trouble getting an IV in, once we were on the floor in the ward the doctor there was excellent. She got all the right tests ordered when the ER folks said they could not be done on New Years eve. Ellie’s aunt later told us that she heard that same doctor telling off the technicians to kick them into high gear to get things done.

Ellie and I spent New Year’s Eve in the hospital. Ellie was monitored and slept on and off. Dave’s brother and sister-in-law insisted on staying the night in the room with us. They had us in a closed off room with two beds and a cot. It was different and nice to have help when Ellie is in the hospital. We haven’t had that since we moved to the East coast. Usually we are there by ourselves the entire time and taking shifts to manage work.

The Irish doctors conferred with our Boston neuro team and they both agreed. The scans came out fine.

Seizures are scary things. When Ellie was first diagnosed with them in May her neurologist stressed to us the importance of putting her on medication for them. In May her seizures were way less severe and we were concerned that the meds would keep her in a zombie like state. We were under the impression that the brain was only effected adversely from a seizure if there was a lack of oxygen. Our neurologist disabused us of this notion stating that in a developing child short term memory is erased randomly during a seizure. So seizures effect and delay the child’s development. I had noticed that Ellie would “forget” some things I thought she knew at this time and I think that was from the seizures.

The reason the doctors surmised that Ellie had this seizure was that her med dose had just been lowered by our Boston doctors (because Ellie had been symptom free since May). We wanted her on the lowest dose possible because she is only 4 and her liver is being asked to process a lot of meds already due to her reflux. We tried a drop of her seizure med, Depakote, and the stuff burns the tongue. I worry what it does to her insides. This lower dose combined with the stress of being tired may have just been too much for her.

Also, for the record, all the decisions we make for Ellie are never black and white. Someone recently said to me that “clearly you have a lot of guilt” over choices we have had to make for Ellie. This is not quite right. We are always choosing between two evils and hoping we picked the lesser one. There are always shades of gray especially when dealing with the brain. So it’s not guilt, but the difficulty of having to live in the gray area and always hoping you did the right thing, which does not always bear out right away but over time. Don’t get me wrong, I know we have done very well by Ellie and worked very hard and used all of our god given gifts and energy to do so. For me, I can’t really go to the place where I might feel proud or comfortable with all of this because I worry that I will become less vigilant. Maybe that’s posttraumatic stress talking. But I do not want to ever relax my vigilance over my daughter and her needs. I will probably never think, ok I have done enough. No, that is not in the cards for me this lifetime. I will be working to help Ellie until I die and that is that and that is ok. It’s a good problem to have because I have become a better person in doing so.

The scariest thing during the seizure was wondering when it would stop and thinking Ellie might die. And then when it did stop wondering if it took some of Ellie with it. We would not know this for a couple of days because she had to readjust to her new med dose and rest. Now that we are back she has remembered all the games we played before the trip and her language has come on even more. She is starting to make word approximations and this is very exciting stuff.

Just the same, seizures suck. I felt really bad for Ellie and what it must have been like for her which I can’t even imagine never having had a seizure. And I did feel guilt about dragging her tiny self across the Atlantic. Though she has done this twice a year for 2 years and never had an issue I still feel bad that she had a hard time of it. We are moving forward on a more formalized schedule of testing her Depakote levels. The entire trip after that we let her rest a lot. Usually I wake her up in the morning each day a little earlier to help her adjust to the time change. I didn’t do that this time so we spent the entire trip being up with her from about midnight to 4am. Ellie had multiple naps during the day though we did not.

We made the decision to continue on to England for the therapy and Ellie was fine for the rest of the trip.

The therapy session at Advance went very well. The picture you see is Ellie in the Hyperbaric Oxygen chamber with Dave. The Hyperbaric O2 Therapy is used to give her diaphragm a work out to adjust to the new therapy regimen. We were given double the amount of exercises we had before which is going to require twice the commitment we had. We are on for it. It’s encouraging to look at Ellie’s recent photos from this session and see all the progress she has made. Her head control is so much better. She is more solid in general and can sit up straighter and is so much stronger. Her coloring too has noticeably improved where she used to be so pale. Her reflux has also improved greatly which is a wonderful thing.

Regarding nutrition. The turkey I mentioned trying was only making Ellie more acidic and reflux more as well. Linda has discovered whey protein that is not sweetened. We took some home with us and it’s excellent so far. I am trying it out myself as well. It is mixed with water and is very mild. You can find it at myprotein.co.uk. We are starting slowly and so far so good. Ellie usually shows adverse effects to foods either right away or over a few days so I will keep you posted. We are also going to add some live enzymes to her diet by juicing vegetables and grapes. Grapes are also very good for increasing motility. We tried Ellie on both before but she was too sick to handle them a year ago. So I am hoping she will be able to tolerate them now.

We are back and moving on from the trip and the Ashley mailstorm. To borrow a phrase from Jacqui and apply it to trying to discuss the whole thing somewhat rationally – you are damned if you do and damned if you don’t. I am tired too. Uncle!

Moving on with a 3BT

1. Home at last after a long journey
2. Ellie excited about seeing her favorite toy - vtech globe
3. Woodstove burning brightly on a cold rainy winter day

Ashley from Stepford- Reposted

I have taken this post down and put it back up again because that is the only way I could get rid of an inappropriate clotheid commenter who thinks that profanities are a meaningful way to communicate. I have also turned on the comment moderation to ensure that this psycho will not be able to mar my blog any longer. If he posts without profanity, personal threats to me, and has something intelligent to add to the conversation I will let his comments go through. It's the first time I have actually been threatened via my blog and probably not the last. Sigh.

Apologies to Maureen, Emma, and Janet who left meaningful comments that got wiped out with the rest. I have also take the opportunity to update this post after thinking about it more.

First off, let me be really clear. I think the "Ashley Treatment" is wrong. Wrong now and wrong forever. There are so many reasons why it is wrong but the main one being that it is a violation of Ashley's human rights. How horrifying that there are now proposed studies to try this on other disabled people. Disabled people who are helpless to protest or disagree.

Ugh. I am just so disgusted and upset at the whole thing. I have so many questions. There are so many "nevers" on their blog. She will never do this or that. All their "could happens" are negative things like cancer and sexual abuse. My biggest question is have they ever tried any alternative therapies to helpher brain heal or grow? Is she not an excellent *future (if it is safe one day - which is might be if the government stops blocking the research into it) case regenerative stem cell therapy? What if that becomes a reality in the future and she could have a chance at a better life - but oopps you are 9 forever????

Even if her condition is truly one that will persist and never change, is it right to alter her body in these ways? It is the system that needs to be changed to include support for these parents. Technical support like a lift and emotional support to deal with the situation. The medical support they are receiving seems quite a slippery slope toward massively infringing upon the civil rights of all disabled people.

This quote below is from the Disability Rights Education & Defense Fund and captures how I feel about this exactly(see link below):

We deeply empathsize with parents who face difficult issues raising children with significant phsycial and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. For decades, parents, families, and the disabled community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to the enactment of state and federal laws in the 1970s that established extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

The medical profession believes there is no recovery from many neurological conditions and some of these conclusions are based on very, very limited population sizes statistically. When something is not clear, making a decision about what to do about it becomes more difficult. Whether Ashley's parents deny it or not, their situation and decision IS all about ease of management. They sound like loving parents - kind of. But the fact that they keep denying this is about managing Ashley physically really irks me. Why not just admit it?

I can personally relate to the fear of a child who is not mobile getting bigger - god my back is in pain every singleday. But my goodness I am creeped out and even if Ellie did not show as much promise as she does or any promise, I would not alter her body unless it was medically necessary for her survival. I think these parents are not being totally honest about their motives and therefore the whole discussion is twisted to begin with. It is such a slippery slope regarding it's impact on the rights of disabled people.

So not trying to be quick to judge but I can't jump on the middle of the road live and let live band wagon either. I am just too creeped out. Gimp Parade, as usual, offers a great perspective and some important points on this whole thing that you can read here.

David has also posted on this here and it is definitely worth the read from the Disability Rights Education & Defense Fund here. It seems that my abusive commenter is all over David's site and Gimp Parade has been lucky enough to have an encounter with him as well. Sad that some people can't discuss things in a civilized manner. Diversity of thought through civilized discussion is what brings enlightenment. Anger only generates fear and ensures ignorance.

Wild Blue Yonder

Hello and Happy New Year! We have been to the mountains visiting my sister and now we are off to Ireland for a family wedding and England for more therapy at Advance for Ellie.

I am hoping to catch up with myself there and share some of the more interesting observations and pics from Christmas and our travels. Dave and I decided to take a huge step towards greater intimacy by sharing one lap top for the entire trip. I know, I know, it's batshit insane and could result in divorce or the death of one of us or somebody losing an eye. But it has to be done. Minimizing the amount of crap we have to schlep across the Atlantic is definitely a higher priority than marital bliss. Giving us the benefit of the doubt for being rational adults who will be able to share said lap top, I should be posting again soon. If I don't post soon, you know that my man has won the lap top armwrestle and I am tied to a chair so he can surf cyberspace in peace. Ahhhh togetherness, there's nothing better.

Nutrition and the Brain Damaged Child Part II:

Responses to the excellent comments, Ellie’s diet, Food Combining and More.

First of all, when I read Emma’s, Jacqui’s and Dani’s comments I just thought to myself, This is what I LOVE about blogging. The discussion can be informed and enriched by various points of view. Instead of answering all individually I thought I would put it in this post. (Emma, I will get back to you on the primrose question. I do take it as a supplement and it's great. But I know someone who knows a lot more about that and am trying to get her to chime in.)

If you are just coming into this discussion on nutrition you can read my first post on it here and see some of Jacqui’s comments at her site here.

Body Weight and CP
On the topic of the right weight for children and people with CP, Emma makes an excellent point. There is a balance. I wrote that children with CP are better off on the lighter side. Which I believe is correct. Emma in her comment illustrates this with her experience being on the heavier side. However, she also makes a great point that when she was too thin she was getting skin breakdown on her “bony parts”. This same thing happened to Ellie when I first took her off all the sugar and bad oils. She lost some weight. To give you an idea of this, when she was 18 months old and on the hideous j-tube and on the medical diet as described in my first nutritional post, she weighed 19 pounds and she was about 24 inches long. She got a bad stomach virus around this same time and was hospitalized for 8 days and lost one pound of weight. Then I took her off the bad diet and she lost another pound. At 17 pounds she was Ellie no butt as one of our friends liked to joke. And her tail bone paid for this. We had to watch it really closely and add extra padding to her seats. Luckily we weren’t doing a lot of sitting because she was on her tummy. It was hard to see her gain weight but over the course of the year she improved dramatically. Her reflux decreased and constant vomiting and gassiness, she moved more and started rolling. She was in general happier because she wasn’t feeling so awful all the time. She also started sleeping better only waking up 2-3 times per night versus 7-10. Believe me this makes a difference. We were then pretty quickly able to switch her back to a g-tube, which only goes into the stomach. The j-tube reached right into the intestines and was painful for Ellie all the time. Emma’s point is well taken that there needs to be a balance. This discussion needs to be outside the realm of any Vogue-esque like weight ideal. That is not what it’s about. Ellie now at 24 pounds has a bum and it is a good thing on all counts. It’s great to see her muscles developing and some fat on her thighs and full cheeks.

It took her a long time to gain back the weight and it seemed like between the new diet, the new therapy we were doing with Linda Scotson and the very gradual reduction of reflux and more sleep because of these things that she has been ramping up on all measures of health ever since. At her four-year appointment she had gained 7 pounds in one year and now she is 36 inches long and weighs 24+pounds. She also gained 3 inches in height and 2 centimeters in head circumference this year as well as many, many developmental gains. Last May she started to have seizures too but Linda gave has a theory on that about it being a response to the increased blood flow to the brain blowing toxic waste left over from the trauma and the bleed she had out of the small blood vessels there. That is another whole discussion.

Any way, no one could believe that Ellie would do so well on this diet including Dave. The diet Linda suggested and I put Ellie on is totally counterintuitive to traditional thinking. But as I mentioned in the other post it makes total sense when you compare an injured, weakened child to an invalid versus a star athlete. As I mentioned last time these high fat high sugar diets are what you would want to give someone who is highly physically active; their metabolism at high speed and excellent motility. NOT someone with the opposite conditions.

Ellie’s diet from the time she was about 2.5 to 4 years of age: Note that all ingredients are organic. Between ages 18 months and 2.5 we put her on a whole foods diet that was really rich in fat and high calorie and she did really poorly on that. Finally we came to the diet I am describing below after much back and forth between Dave and I and several discussions with Linda. This diet is counter intuitive if you have come out of the NICU experience or dealt with traditional nutritionists.

Morning Meal: Flaked Millet with Rice Milk and then we would add 2.5 gradually working up to 5cc (1 tsp.) Flax Oil and her vitamin. We also added the supplement Ambrotose that was recommended by Linda. It is supposed to help children assimilate the natural proteins in all foods. (If we could have used soymilk we would have because it has more protein, but Ellie is allergic to it. Rice milk is not optimal because Rice is acidic. But we needed the calories and she seemed to do ok on it. I am hoping to get her off it altogether. I have been experimenting with aduki bean milk. You can make milks from grains and nuts with a soy milk maker. In truth I have not spent enough time on getting her on a better “milk”. I could even combine rice and aduki beans to make a complete protein. And this is a nutritional project still to be completed.

Lunch (2-3 hours later when the cereal has been digested): Nanny Goat Formula. We started off using the goat milk formula versus plain goat’s milk because it has a balance amount of nutrients and vitamins. Ellie has done really well on this. If your child cannot tolerate soy, goat milk has a lot of protein and the molecules are smaller and more easily digested than cow’s milk. We give her actual goat’s milk from time to time and she even more easily digests that. Our GI doctor has told us that this is popular in Mexic but that the children end up with a vitamin C deficiency if they are only given goat’s milk.

Snack Meal #3 (2 hours later): A non starchy all vegetable meal with vitamin, Ambrotose and Flax oil added. This is food combining – you don’t want to ever mix animal protein with starch. This is not Atkinesque. For this meal I make her non-starchy vegetable and legume purees consisting of cooked red lentils (easier on the system than green) and carrots, celery, leeks, garlic. Or zuccini pureed. Green pea soup as well with carrots and celery. I also make her a mixed veg with kale, summer squash, spinach, carrots, leeks, and cabbage. This tastes great and I always ask myself why I don’t make it for Dave and I. Ellie has the best diet in the house. All of these things are very plain with no salt or spices and all very good for her. Starchy sweet vegetables, being non optimally combined with proteins and sweet make her reflux more. These include: sweet potatoes, butternut squash, potatoes, parsnips. We have tried all and all don’t do very well by her.

Now that she is so much bigger I have added in turkey soup for this meal. I take turkey thighs over chicken because they have more amino acids. I cook them slowly with a small amount of water, a couple of carrots, one clove of garlic and celery. Celery is great for digestion and adds a subtly salty flavor to the food. Puree this all up. Ellie doesn’t really like it so we bolus her. She loves purreed carrots and zuccini and will eat that up – it’s like candy to her I am sure. I am not sure the turkey thighs are the best thing at this point because Ellie is not sleeping great and seems more acidic. This will sound weird but I can actually smell the acid on her breath when it gets bad. She also seems gasier so I have stopped the turkey this week. I did add in avacodo with the veg puree – about a third of one and she seems to be tolerating that. Avoacodos are great, I give them to her raw so she gets some live enzyme and they are jam packed with omega threes and other vitamins. Linda I think would have her on no meat at all. But Ellie is type O blood and Type O’s need their meat. For more information on blood type and diet here is an excellent book.

Tea/Dinner Meal #4: The last meal of the day one hour before bed we give her grain again and the rice milk. On this diet we don’t feed her at night. Recently in the last 6 months Ellie has been waking up in the night hungry. So we will feed her then and I increase her portion sizes. She has been growing quickly and her body wants food so we give it to her. I have been working hard on finding ways for her to tell me she is hungry and in fact give her that as a choice through out the day and if she picks it offer her food.

A note on portions and meals: For someone who has week digestion it is easier to eat 4-5 smaller meals than 3 big ones. The conundrum is that eating more meals speeds up the metablism and makes it more difficult to gain weight. But if you have a kid who can only handle small portion sizes, then you have to give them more meals. Or (sarcastic humor alert) just go the medical route and have their esophoguses’ stapled shut…

I had a hard time with portion sizes. I don’t have other kids and did not know what Ellie could eat. She went through a period 10 months ago now when she was eating a ton of food by mouth. I remember people saying to us, wow your kid ate all that, mine won’t. Ellie at this point could down one and a half cups of food in about 15 minutes by mouth. It was a great time to be alive. Sadly we are back to have her refuse to eat and be really distracted. There are a number of reasons for this but are off topic and will appear in another post I am writing about sensory integration. Anyway, it was then I realized what a good portion was. It was then we stopped calling it feeding time and calling it mealtime. It’s amazing when she does a normal thing how you see how far away from typical you can get. It’s like paradigm surfing.

A note on Rice: It is better for children or anyone with a compromised system to eat white rice versus brown because the husks of brown rice have mold in them, which introduces another toxin into the system that they have to deal with.

A note on Grains: I am a big, BIG fan of Millet. It’s one of the easiest grains to digest. Whole civilizations have existed on Millet as their staple food. It has a ton of great nutrients in it and won’t clog the intestines like rice can. If we can’t get purely flaked millet we get a multigrain-flaked grain cereal (with NO wheat) and use that. Mixing grains, other than wheat, is also very good because you triangulate all the good vitamins and minerals between the different grains. But if you child is having a hard time with digestion in general – start slow, start with millet.

A note on organics: We are big believers in organics. Literally everything we feed Ellie is organic. We eat only organic meat and dairy. Dave and I are not as religious about it as some people I know meaning that we will eat out at non-organic restaurants etc. But at home, especially with dairy and meat we eat organic. As a woman this is especially important and I tell all my friends if there is one thing they switch to organic on it should be dairy and meat because all the antibiotics, hormones and chemicals they put into the cows and pigs and chickens reeks havoc with the female reproductive system. There has been 100 percent increase in Lupus over the past few decades. I believe it’s from all the crap they put in food. In the patriarchal system many things that could affect women for the negative are overlooked and under valued. There are also limited studies on women. One way women can start to get some control back is to NOT purchase products that are especially harmful to them and ask their grocer for better products like organic meat and dairy and even feminine products without bleach. This should be a whole other post. It just galls me sometimes the crap manufactures put in products. Sometimes I think they do that because the big multinationals are trading and selling their waste products and need some where to put them so they put them into women’s jewelry and tampons etc.

A note on protein and when to eat it. This one is directed at you Jacqui in response to your thoughts on why Moo is not sleeping well. When I first read that on your site I wondered if he was getting a protein meal late in the day. Ellie has really slow motility. I wondered and surmised that Marshall’s motility might not be optimal either. That’s a function of weak sphincters I mentioned in my first post (something Jacqui is well aware of I am sure). This point about protein ties into the principle about sleep and eating. Protein takes the longest amount of time for the body to digest (oil slows motility down too). This is why we don’t give Ellie any protein after 3pm. (Now we just started giving her the turkey thigh soup at around 4-5pm and she isn’t sleeping as well and I am wondering if that is why – but this is new and there are other factors to consider like we are coming down on her seizure meds.). But if Marshall is getting a lot of animal protein (milk) right before bed his body will spend most of the night digesting it. This will interrupt his sleep and weaken him in general as his body organs won’t get to do all the renewals stuff they need to at night. Just a stab at trying to help here Jacqui. I myself don’t like to eat protein after 5pm because I wake up feeling bad and don’t sleep as well. If you have to eat late at night eat a piece of fruit which will digest the quickest. We can’t give Ellie fruit at night because it is too sugary and makes her very acidic. See how tough this is!

A note on palate: When you eat a lot of rich foods your palate gets very high tuned so that you continue to crave foods that “taste” good. To a highly tuned palate rich foods are more taste-full. Transitioning to a lower more naturally tuned palate can be rough at first because the less rich food may be tasteless to you until your palate adjusts. And palates do adjust. Try cutting out sugar for one week and rich fatty foods. Start eating more raw foods and simple grains by the end of that time they will taste a lot better and if you go ahead and eat cookie after that it will burn the back of your throat with it’s sweetness. Dave, god bless is adventuresome carnivorous Irish heart, did a fast with me one year ago. We were feeling really depleted by everything and worried about our health so we did the master cleanser for 7 days (DO NOT TRY THIS AT HOME OR WITH YOUR CHILD!). To break this fast we had steamed vegetables (bok choy, cabbage, carrot, butter nut squash with no salt or anything). It was the nectar of the gods. Dave ate it and said, “What did you put on this, it’s amazing!” This was the first time I think he ever had his palate tuned so low and he was right, it was an amazing meal. I made that meal for us again a couple of weeks later when we were back to our usual eating habits and we both noted how it did not taste nearly as good.

On-going journey
When we go to Advance in January Linda is going to show us a new protein source. We are at the point where we do have to change Ellie’s diet again because she is so much bigger. We will stick to the principles I am outlining but make some additions now that she is healthier. It’s important to note that she made all these gains on the very simple diet of grains, goat milk formula, non-starchy vegetables and water. Even Ellie’s GI doctor, when Ellie started to thrive on this literally said to me, “You proved me wrong.” He’s a great doctor from Mexico and was open to me trying this new diet because in Mexico there is no Neocate and Polycose. He admitted that when there he encourages the mothers to give their kids sugar. Sugar and fat, as we have proven are not the best way to get these kids to gain weight. When Ellie was on all of that she gained weight but she did NOT gain inches in height and her development slowed because she couldn’t sleep, and was sick all the time. On this simple diet she has been thriving and steadily going up hill on all fronts.

Disclaimer
I want to make it clear that I am NOT a nutritionist. My only background in nutrition is a life long interest, lots of books (a Good Will Hunting approach), and being fortunate to have some close friends who are either herbalists, aroma therapists and some who have followed alternative diets their whole life and saved themselves from cancer and many ills.

Last Disclaimer
If your child is thriving on some of the foods I said were bad, don’t mess with it. Ellie had a massive injury at birth and was very, very bad off after that for a long, long time. We had to figure out a lot of things I hope most people never do. I am only recounting what helped her in hopes of helping other parents.

That said, I truly believe and practice these principles with Ellie and she is better for it. We have her blood nutrient levels checked each quarter because she is on a reflux med that is highly watched – cisipride and all her vitamin levels are coming out consistently well. There’s lots of proof that she is doing great. But still we are not allowed to stay complacent. As she grows her body’s dietary needs change and we have to figure out what to do all over again which is the point we are at now. It’s a good problem to have.

Observations of the Blogosphere: Errant Muses and Stalker Fans

Sometimes being a blogger is so annoying. For example, this post came to me in the middle of the flossing portion of my nightly routine. I’m almost done with keeping up with my dental hygiene and in comes my Muse. He’s all awake and ready to go. I need to have a little talk with him because he’s a little too fond of the bubbly. He sleeps all day and then wants to party all night, every night. He demands my attention when I am ready for sleep. I have tried to schedule appointments with him during Ellie’s nap time but he is way too hung over at that point and no amount of coffee or coxing can get him up to work. Sigh.

Anyway, here are the realizations I had delivered direct from the muse in the middle of a good flossing:

Observation #1.
I have to admit I didn’t quite get this next fact right away. Sometimes I can be a little slow or over confident – depends how you look at it. I realize now that being a professional blogger is harder than it looks. Not that I am a professional blogger. But I have been reading some of the big blogs and didn’t really appreciate how hard that is to pull off. Reading a professional blogger’s blog is a bit like watching Nadia Comaneci get a perfect 10 in gymnastics. Now, many of you may be too young to remember her but she was perfection in motion. She made it look like doing back springs and handstands on a 4-inch beam of wood was easy. As a young gymnast watching her way back when I was inspired. Good bloggers, professional or not, are like that. They post each week and make it look effortless. But, it’s not.

I really admire, her and her and him and him, and I am not saying this in a kiss ass way which will tie into my next point. I watched Heather talking about “Getting Naked on the Internet” here. She discusses how she made the decision to be as transparent as she can about her life. She’s pretty damn transparent. She is also pretty consistently funny, profound and sweet 4 times per week. I noticed that she has a pattern to her posting and definitely a routine in terms of posting links, photos, and posts. She’s got it down.

Transparency. I am still struggling with this. Not that I think Heather is 100% transparent or even 80% but she is well beyond 50% transparent about her life and that’s quite a lot if you think about it. Would you be willing to reveal the inner workings of your mind and the day-to-day details of your life regularly for years and years? How much would you dare to share? How much do you care if you scare the crap out of your friends and family by letting them know the weirdest bits of your inner workings that all get glossed over in normal day to day interaction? So hats off to all my favorite bloggers for sharing parts of themselves that sometime give words to things the rest of us might be feeling but have never dared to bring to full consciousness. It’s hard work.

Observation #2
In this post I mentioned how there were cliques in the Blogosphere. Recently I have also noted that there are also groupies and stalker fans. And they can be pretty annoying. Of course I don’t have any, thank god. These wannabe professional bloggers kiss ass in the comments of major blogs. It’s such a transparent way to try to drive traffic to your site. There are even some who admit this. I don’t mind that as much, other than it being useless, off topic and will ensure I never go to their site. For examples of this take a look at any photo Dooce has ever posted. Do you hear the big smacking sound of ass kissing? Not that she isn’t a talented photographer, she is. But I swear she could put up a picture her own turds and people would be saying things like, “Oh, that is so cutting edge.” And, “Wow, even your shit is gorgeous? Can we see Jon’s too?”

Seriously, there is an organizational dynamic phenomenon that is at play here. It’s about authorizing a member of the group to be loved and to set the standard. It’s all anxiety driven but that’s too long of a topic to get into here. The beloved can do no wrong. As in Dooce’s case there is a royalty like thing going on. Of course she has pissed off the whole right wing side of the Internet. Which is also part of being authorized to the point of celebrity. It’s the dark side of a shiny, shiny coin. Very interesting to watch if you are an organizational psychologist geek like me. Ara, please chime in if you are reading this as you are an even bigger geek about these things than me. And that is a compliment to be sure.

In the spirit of trying out some new level of transparency, I admit I have wanted to be linked to a more popular blog to the point of kissing the blogger’s ass. But that’s over now as I realized they were just schmoozing me right back, fair play to them. In truth it’s not worth the humiliation of having to express wonder over someone else’s shit.

Here are some of the characteristics I have noticed about blogs that have become so viable the blogger can support themselves and their kin if they so choose:

1. The blogger’s predicament in life that they are blogging about is something a great many people relate too in a variety of ways. It could make them laugh, cry, gasp. There is definitely a shock / humor factor that comes into play here. Dooce excels at this.

2. You have enough writing talent to keep people consistently entertained.
The thing you are blogging about is topical/specific and becomes a resource for others. An Example of this is Ask Moxie and some of the other Parenting Blogs. But it could be any blog dedicated to one topic that a lot of people are interested in like Fusion View. If you are lucky you find your community and the viral marketing nature of the Internet happens and your blog is vaulted into the main stream as seems to have happened to Clare’s blog. She touched a nerve and a need in others to look at the good things at a time when there is a lot of chaos and war.

3.You are a savvy enough blogger to participate in blogging forums, conventions, and hosting ads. This is the whole business end of the blogging machine and there are a lot of behind the scenes entrepreneurs out there working the Blogosphere market.

Ok – that is all my muse could give me as he had a hot date at some exclusive muse club. I am sure he will be around to pester me later this evening.

Did I mention she has the Pox?

Ellie has Chicken Pox, again. She was immunized 2 years ago by accident – sort of. Those were the days when we were up 7 times per night and walking around like zombies. Dave took her in for a doctor’s visit and they surprised him with the immunization. We had not discussed it and he did not realize it was a live one. 24 hours later Ellie landed in the hospital with a fever and severe vomiting and exactly two little pox on her skin for EIGHT days. After that I thought we were done, DONE with the pox.

But nooohhohooo. Apparently the Chicken pox immunization works only so, so. In our case it worked not at all as Ellie got the pox from it. So get this insanity, Ellie was scheduled next week to have her booster shot for Chicken Pox. If you step back and look at it, as I am right now in writing this post – it makes no sense.

Anyway, now that she is having what they are calling a “break through” case of the pox they assure me that she really, REALLY will be immune to Chicken Pox forever, oh except she has a 20% chance of getting Shingles later in life like all who have had the pox.

Don’t ya love it?

The good news is that it’s a really mild case. She does have several mini chicken pox on her back, legs, and arms but she has not been itching them. She has a small fever yesterday of 99.8 axillary and is keeping her fluids and foods down though she is refusing to eat (this is when having a g-tube keeps you out of the hospital – small consolation). In general, though a little tired, she is in great form.

My memories of the pox are old and very different. My two sisters and I had them when we were between the ages of 2 and 5 all at the same time. We were covered with them and they were so itchy it was insane. I remember us jumping up and down on my grandmother’s bed, laughing hysterically and itching all over and scratching! Ellie seems far more dignified about the whole thing.

Nutrition and the Brain Damaged Child: Part I

This one is for Jacqui and Moo.

Sometimes I think that there is so much to say about this I get overwhelmed. But at other times I know too it comes understanding and practicing a few important principles. I will share those first. I have a long background in studying nutrition because it has fascinated me from an early age. However, most of these principles and especially as applied to Ellie I learned from Linda Scotson at Advance. I will tell you the principles and then describe our journey and what has worked for us. Disclaimer: This is a cautionary tale. Though I believe in the basic principles wholeheartedly because they have worked for us and because they are logical, every child is different. A person’s blood type definitely comes into play in terms of what they should eat as well.

This post pertains to post NICU experiences. Ellie survived her 133 days in the NICU first on Total Perenteral Nutrition (TPN) through a PICC Line and then on breast milk. When Ellie got home we had her on breast milk for as long as we could. I pumped for Ellie for 19 months and my dear friend Kate donated her extra milk for over one year. After that we tried the nutritionist/doctor recommended diet, which was a disaster. Then we found Linda Scotson and went to England to go to Advance which is when we started changing Ellie’s diet and her health has been improving dramatically ever since.

Basic Principles Necessary for Understanding Nutrition and the Brain Damaged Child:

1. The Circulatory and Respiratory System and sphincters are weaker in a child with brain damage. When the brain is injured in any way the body sends most of its nutrients and oxygen to it first. The body instinctively protects its brain. When this happens to someone in infancy or in premature infancy like Ellie, other significant parts of the body become much weaker, the diaphragm and all the sphincters especially. This is important to understand as it dictates how well the child will breath, saturate their blood with oxygen, digest food, and heal.

2. Brain damaged babies and children have very few reserves. Reserve means a person’s ability to fight disease and infection. If you have a lot of reserves you get over colds quickly without too much taxation on your body. Elderly people often have low reserves and that is why they are fed broths and things easy to digest when they are sick. This same logic is not applied to babies and children.

3. The Twinkie Rule: Eat/ingest food that gives maximum nutritional benefit to the body while using the least of the body’s nutrients and energy to digest and metabolize the food. It is especially important for people with low reserves to eat things that give them the maximum amount of nutrition that takes their body the least amount of nutrients to digest. This is what I call the Twinkie Rule. When you eat a Twinkie you get nothing from it nutritionally but you use up nutrients and body fluids to process / digest that Twinkie. So your body is actually depleted / has less nutrients in it after eating a Twinkie than before. If you have a lot of reserves like most healthy people, you will be fine having the odd Twinkie here and there. But have you ever noticed how if you are run down and you have sugar you will get a cold or virus?

When I feed Ellie I want her body to get the maximum nutrients with the least expenditure of her energy to do so. The medical paradigm nutritionists had Ellie on a high fat and high sugar formula, basically a Twinkie diet with a horrible synthetic multivitamin thrown in to *beef her up. They did beef her up to some degree but to do this we had to get Ellie a J-tube, which fed the food directly into her intestines so she could not vomit it up. The rich diet made her sick as a dog every single day for one year. She had horrible gas from this and we were venting her 30-50 times per day – i.e. meaning opening up her gastrostomy tube and letting the gas escape her stomach. The j-tube was also really painful for Ellie and she woke up 7 times per night in agony that nothing would fix. We spent many whole nights rocking her, putting her on her stomach to relieve the pain, venting her, trying to calm and sing to her. She felt awful and we were exhausted. No one was sleeping.

It is important to note that during this time Ellie did gain weight as you can see by her arms in this picture. However, she did not gain inches in height or head circumference and had a definite lack of developmental progress in general. Why? Because she was sick, tired, gray of pallor, exhausted, gassy, all the time on this diet. We truly gave the nutritionist/doctor/big huge multinational companies pushing synthetic, surprisingly profitable baby food down our throats our best shot. All along the doctors were pushing us to get a Nissen Fundoplication, which would make her permanently unable to burp or vomit as subject her to another surgery. It would also have made it very difficult for her to ever eat by mouth. Something the doctors had decided for us that she would never do. And they were completely wrong on that one. This is what galls me about the medical paradigm. It says if something is not getting better to manage with medication or “nutrition” the next step is surgery. The food makes the child sick so make it so the child can’t vomit it up. This is the medical paradigm for you. Is this totally BATSHIT INSANE, or is it just me?

Instead of saying, gee maybe the food we are feeding her is not working and we shouldn’t we change that, they say, let’s surgically close off her stomach and force the food into her. Why listen to what her body is telling us? We are nutritionist and doctors we know better what to do than the body does. The nutritionist would come to our home and ask why we were not getting enough volume into her. She would eye us suspiciously like we were purposefully starving our child. I thought she was going to call child services on us eventhough Ellie’s weight for her size was ok. But when her weight was compared to uninjured non premature birth babies it wasn't even close to the curve.

I understand the doctors and nutritionists have true concern for kids with such injuries and want to ensure they are getting the best nutrition. All you hear in the NICU is how your kid gaining weight and getting bigger will take care of all things. And in part, it's true the bigger they get the healthier they get. What I am saying is that sometimes practitioners of the medical paradigm can't see the woods through the trees. They get a little dogmatic about it versus looking at the child. Look at the baby was the first rule we learned in the NICU from dear Dynio.

But I digress. This nutritionist wanted us to feed her 900 cc’s of this mix of Neocate and Ploycose and MCT Oil per day. We tried but between the vomiting and pain and venting we were unable to get the volume in. At this time Ellie was on a 23 hour per day continuous drip feeds. Let me tell you that carrying around a Kangaroo pump whenever you need to move your baby is tough as well as the stares. Being fed all the time also does not allow the body to rest and do the maintenance it needs to when it is not digesting at night.

4. Sleep is critical for healing the brain and body. Sleep is so important to protect in anyone but especially a person healing from brain damage. In sleep the body works to heal itself, replenish it’s supplies of bile and other important fluids. REM sleep is the time when memories from the day are permanently incorporated into the neuro net and become things learned and in babies and children developmental milestones. Rich, sugary foods can interrupt sleep because the body is too acidic and reflux occurs. Blood sugar levels rise and crash and are harder to regulate when the body has ingested sugar which can also interrupt sleep.

5. All cells in the body build up acid. Uninjured typical bodied people get rid of this acid by moving around. In someone who does not move much the acid builds up in their cells and they become very acidic. Pair this with the weak sphincter muscles and slow motility and you have a recipe for severe reflux or GERD and eventually esophageal cancer and a very hard situation for the person. A low acid, high alkaline diet is really important to counteract all of this. The medial paradigm diet is high acid with its sugars and way too rich with its fats. I will go into the different food groups to cover acid and alkaline foods.

6. *Brain damaged children with CP are better off being on the thin side. Any extra weight is very hard on a body with an underdeveloped circulatory system and muscle weakness due to neurological issues. All children with brain damage especially those whose brain was damaged by an anoxic event – meaning a lack of oxygen have a weakened circulatory system. The therapy we are doing with Ellie each day works on strengthening her circulatory system as I have described in other posts. But there was this need on the medical nutritionists’ part to put some meat on Ellie’s bones at all costs. Ellie was skin and bones for a time after I took her off the medical diet. But now as you can see she is much healthier. Extra weight on a person with neurological problems just taxes the already low energy reserves of the person even more. There is a fine line between being at the right weight and over or under weight. When you feed a child in this predicament whole and simple foods and they are get enough sleep the body will find it’s ideal weight for the state it is in at the moment. We saw this with Ellie along with greater growth and developmental milestones, less illness, way, WAY less vomiting and rosy cheeks.

7. Proper food combining is essential. A friend of mine always used to say, “You are only as old as your enzymes.” This is in fact, a good point. Each type of whole food you eat takes a different enzyme to digest. Fruit takes one kind of enzyme to digest it and vegetables take another. Even within the fruit food group, melons for example put an extra load on the body to digest so they should not be combined with anything. Meats take different enzymes than carbohydrates. Eating the two together is particularly hard on the digestion. A great book that goes in depth about this is Healing with Whole Foods: Oriental Traditions and Modern Nutrition by Paul Pitchford. We have seen a huge decrease in Ellie’s vomiting and reflux due to combining the right foods. Of course this ties into the Twinkie Rule.

My Reference Books:
Prescription for Nutritional Healing by Phyllis A. Balch, cnc and James F. Balch, MD
Healing with Whole Foods by Paul Pitchford
The Body’s Many Cries for Water by Fereydoon Batamanghelidj, M.D.
The Rainbow Diet by Gabriel Cousens, MD
Herbs and Magic Healers by Paul Twitchell.

If you are new to learning about nutrition reading the first chapters of Nutrition Healing will run you through many of the basic concepts. Healing with Whole Foods discusses lifestyle choices that affect the way your body assimilates food as well as information on food combining and recipes.

Part II will include details of the diet that has helped Ellie thrive, food combining and more.

3BT's - Tell Me Yours

Hi Everyone. We have been in a really busy cycle again. (Like we ever left the first one...). Anywhoo, am trying to keep up with my new discipline and quest to be the MOTSP. Here are my three in Haiku format and they may be a bit cryptic, but they are my 3BT's. Each line is one of the beautiful things:

Sweetest smile I know
Ellie turning the handle
Good friends drinking tea

I would love to hear your three beautiful things in the comments of this post, Haiku format optional.

4BTs

I, and about 30,000 others, emailed Clare this story. Being an organizational psychologist, all matters of the human psyche are interesting. Of course this story made me think of the movement Clare has started and all that positive thinking. Focusing on the good and the beauty instead of all the great, great many things that are really f$%&#$ up. I am sure that all of this is counteracting the entire murderous goings on across the globe.

For myself, I decided to practice it for three reasons: 1. While I don’t think of myself as a major whiner and I do try to always look for the good in my life, I have not done it in such a disciplined way. And right now, things are a bit on the overwhelming side so it’s a good time to start. 2. It’s a great way to be Master of the Short Post as Ara has been kind to notice. 3. It can’t hurt. ;-)

Today’s 4BT:

1. Ellie really can read. I'm always trying to make sure she knows what I think she knows and since she can’t speak this is difficult. I have been telling people she can read about 30-50 words. And I think this is true. But being 4 or 3.9 months if you do corrected…she is not always consistent. As a reality check to make sure every now and then that I am not just some deluded windbag I test her. Today she let me test her 5 times. I used her magnadoodle and wrote the letters of a word all mixed up at the bottom of it. For BATH I put down A B H T. Then I said to her, “Ellie, how do you spell BATH? Which letter comes first?” Sure enough, she put her thumb, which is her way of pointing, on the B. Then I wrote B at the top of the board. Then I said, “What comes second?” But she was way, WAY ahead of me. She quickly put her thumb on the A then the T then the H, which I had to quickly, write at the top. Of course there was lots of fan fare at this event. I rearranged the letters and she picked them out four more times with the words Cat, Dog, Mama, and Dada. She was lightening fast with all of them. So it’s a splinter skill according to school officials. But, damn if she can’t read!

2. Dave, a.k.a. really great hubby guy, taking over with Ellie when he got home and making me go to bed because I was feeling really sick.

3. Our Christmas tree, which makes me smile every time I see it and makes the house smell of pine. (pics to follow)

4. Linda Scotson and her tireless, 27-year quest to find healing solutions for brain damaged children. I spoke with her today and discussed Ellie’s diet and she has had yet another breakthrough on the nutrition front. I will go into this more when I write my post on nutrition and diet for kids with CP.

*3BWAALTs

1. Ellie being able to tell me where the pain is.
Last night Ellie was up at 3AM and would not settle. I got her attention between whinges and said, “Ellie. Do you have an aowie?” Ellie looked at me and looked at her legs. I said, “Show Mama where your aowie is.” Ellie took my hand and put in on one leg then the other. I have been trying to teach her to tell me where the pain is for 2 years now – so this is a major breakthrough. We took off her bivalves and I gave her some Motrin and she went back to sleep.

2. Ellie waking up at 8:10AM (versus 5AM as usual) after a difficult night. This could also be called; not having to get up after only three hours of sleep when it’s still dark and the world is asleep around you.

3. Dave’s floor feathering repairs. Lovely! He is healing our ramshackle house and fixing up the mess the airvent guys left. The energy in our home feels so much the better.

*3 Beautiful, Wonderful, Awesome, Amazing, Lovely Things

Husband Training 101

Me, “How do you like my hair this way?”

Dave, “It’s alright.”

Me, “It’s alright but you like it better another way?”

Dave, “No. I like it curly. It’s cute that way.”

Me, “Yeah. Only an idiot would not like it this way.”

Dave, “I’m glad I said the right thing. I wouldn’t want to be branded for saying the wrong thing.”

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.