Cha, Cha, Change! or Goodbye Feeding Tube!

Ellie having a lavender foot soak on her Winter Break

This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.

When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.

Me and Ellie playing her Paper Jamz guitars

Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.

 In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day. And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun. So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.

When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad. She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam. She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it. Long story short we tried the tube and it worked a little better but not much.

 The whole incident with the nurse losing it was actually a wake up call for me.

We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.

I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.

However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.

Nosey Cup

But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site. My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.

In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.

Ellie's Hydrating Cantaloupe Water Recipe:

1. 1 cantaloupe
2. 1 100 ml or more of coconut water
3. 1 pinch sea salt
4. 1 tablespoon of agave

Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).

Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it). The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated. Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.

Ellie on New Year's Day 2014

On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges. Full recovery took about 2.5 months.

Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either).  She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore. We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.

Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube. For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse. Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.

Going Vegan = A Feminist Act...Who Knew?

By Ann Taintor

Who knew that me becoming a vegan was actually challenging societal gender norms?  I am bemused by the responses of some younger women and a few older women to me when they heard I have become vegan. They all said similar things along the lines of, "What is your husband going to eat?"  The body language that accompanies this question is a look of concern which leaves me wondering if what they are really asking is, "Will you have time to cook two meals?" And "Are you sure that's really wise in terms of caring for your family and keeping your husband happy?"

Receiving these questions just floored me - is it not 2013 versus 1813?

By Ann Taintor

My mother decided to be vegetarian when I was about 12 (at the same time I read Diet for a Small Planet and decided to become a vegan). What this meant for her however was cooking one meal for she and I and another meal for my father and two sisters. As you can guess - this was a lot of extra work. The jeering and criticisms of her alternative diet from the carnivores did not make for a harmonious home either. So it was short lived for her but not for me. I was a vegan until my mid twenties when I had a iron deficiency and then went vegetarian.  When Ellie was born as I have written about, I started eating meat again and did so until this January 2013.  To those of you who may have thought "See!" when I shared the iron deficiency - remember that I didn't say I was a very good vegan.  There were not the resources online (actually there was no  online other than email) available today.  And at that time I was a very, very poor artist living in Western Mass trying to figure out my life.  It was often a choice between should I buy this apple or this tube of paint? But that's another story.

Zooming back to the matter at hand, I am grateful to have found a mate who had no interest in a traditional, feminine mystique type, of marriage set up, where, as in the houses we were both raised in, the woman does all the cooking and cleaning and everyone sits down for meals together at the same time every evening. My experience with that growing up was to see how stressful all that cooking was on my mother. As a result she often over cooked the food and meals were a source of tension which only fed the fire of our family dysfunction.

Stemming from this, I never, ever wanted to have us all sit down at 5pm and have dinner. Ever. I rather not be married if this was the expectation. In fact, getting married at all was a stretch for me. I only did it to make sure Ellie was protected in all the ways children of married people are.  That, and to be totally truthful, I got tired of them stopping me in the emergency room as Ellie and Dave (she has his last name) would get ushered in and because I had a different last name they would stop me and say ask, "Who are you?" My exasperated reply was always, "I'm the mother!!!".  Seconds count when your kid has hydrocephalus - for crying out loud.  That had to end.

Orange Cashew Cream Dressing that Dave made
 when I was away on business.

Atop those strong sentiments, things with Ellie have also taken a non traditional path that meant differences in eating times etc. She only eats purees and does so about 5 times per day and before that was eating around the clock via drip feeds and had/has oral aversions.  So though we do sit down together regularly as a family usually on weekends, there is a lot of working with Ellie one to one around food and making it safe.  Additionally, Dave is not your traditional guy in that growing up he regularly cooked for his younger siblings.  He had a working mother and being the oldest he understood how hard she worked for both her job and the family - he didn't take it for granted.  As a result of all that cooking as a teenager, he knows how to fend for himself and others in the kitchen very well and did so before we met. Lucky me.

For the record - I do not cook meals every day for anyone but Ellie.  Dave and I cook for each other when we are already making something for ourselves.   We coordinate and both cook larger dishes like a soup or a casserole but again not every day.  He more often then not will make me dinner because he eats it regularly, whereas I do not. And he makes the best big salads that are filled with nuts and tons of veg and hummus for example.  I have been into making new vegan concoctions like lentil and rice chard rolls with cashew cream and smothered in tomato sauce and tons of green tonics and juices and cold soups - basically going 80% raw and 20% cooked. And he eats what I make when he wants and vice versa. But it's casual and 50/50.   Other than Ellie's diet which I made up all the recipes for and watch over very closely, we both do the cooking.

To answer the question directly, "What does your husband think (of me going vegan)", here is a list of his responses:

Life Alive inspired Buddha Bowl that Dave made

• He bought us a half farm share at the local organic farm
• He and Ellie planted a ton of seedlings that he purchased the seeds for by mail order and all the soil and pots etc., that he waters and tends to daily with Ellie when she can be torn away from her fijits who are a little more exciting than seedlings - though when they first popped out of the soil she was very excited! ;-)
• He drinks green juices with me every day of his own volition
• He solicits the choice and regularly encourages us to go to vegan restaurants.
• He cut back on eating so much meat and increased his veggie intake and has lost 25 pounds doing so (that's been a really great side effect of me going vegan)
• One night I came in and he was about to watch Vegecate on Netflix and asked me to join him. Since watching that he is researching how to get protein and iron out of plant based foods.

In sum, his reaction has been very supportive and he is still reacting in a way that is making me very happy in that he sees the positive changes in me and wants to come along down this path - in his own way but near enough to me just the same. He has lost weight and is feeling better. There is a lightness between us.  So that is what he thinks of it and how he responded to me going vegan for the 2013 record.

I think there are all different ways to structure a life and a marriage. The more creativity that is worked into that structuring the more room for individual expression and bliss. I am always alarmed and saddened to see that the legacy of hundreds of years of gender inequality is still with us. I lecture on this topic in my graduate courses so I know the stats. But in this question, "What is your husband going to eat?" there is found all that inequality as a societal norm - like DNA coding that seems very hard to change.

Ryn-newal

In January of this year I set out to transform my life.  I had been feeling tired every morning, Ellie wasn't sleeping at all...again, and I was just sick and tired of being tired and in pain all the time from a variety of things namely osteoarthritis to start.  And I am not even that old to have such a thing which incidentally has my doctors also scratching their heads.   I was also still so wound up from the previous months of finishing my dissertation and hosting a huge family party and dealing with a promotion which brought with it a lot of extra work.  No rest for the weary and I was weary.

Last summer I started exercising and that helped. I road my bike all summer which was a lovely thing. Though I was limited on how much I could ride by time but also Boston traffic which is a killer. The good people have deemed themselves "massholes" and they live up to this reputation and sadly as a result many cyclists are killed each year. So during peak traffic hours I don't ride. Then the bad weather hit...

However, from my bike racing days I had a perfectly good wind trainer collecting dust in my attic. I pulled it out and have been riding away, nearly every day regardless of weather or traffic. Now that it's warm I can do both inside or outside rides but ride every day.

This was a good start. Then I decided to give up meat, dairy, fish, sugar, caffeine, white flour, and gluten...yep it's a big list.   I was inspired by kriscarr.com and her books. Her book Crazy Sexy Diet contains a great deal of information I had heard over the years in various places but not so well explained. It's worth the read. 

As a result I pulled out a champion juicer that Dave had found at a low, low price on Ebay in 2003 that was collecting dust and began to use it every day to make versions of Kris' Make Juice Not War juice. I started drinking 16 to 32 ounces per day as well as blending up green drinks that were originally inspired by whole foods fresh smoothies which now are not nearly as tasty as what I blend myself. Instead of high glycemic fruits I blend up spinach and green apple and cucumber, cilantro and hemp seeds with water and fresh lemon. Yum.  

By doing all of this I lost 18 pounds and no longer wake up in the middle of the night from aching joints.  (Gluten has been linked to arthritis.)  The diet Kris proposes is a low inflammation diet - which is also really important for Ellie. I realized that some of her food is really high in inflammatory food so I changed that. For example I make her a dish called Green Goodness that was avocado, apple sauce, and strawberry coconut yogurt. Very high in sugar.  So I changed it to avocado, cucumber, mint and fresh pear and sometimes some plain coconut yogurt. And she eats it and loves it. I also add in hemp seeds. 

Instead of roasting her sweet potatoes for her puree I cook them at a low temperature so that they don't caramelize (which increases the sugar content). I also started her on 16 ounces of the green juice and got her off dairy.  As a result her nose is not constantly running and she has been sleeping through the night - nearly every night since she started getting the green juice. For those of you who have been following this blog for awhile - you know that is saying something!

I also have had allergies for years starting about 10 years ago that have kept me up hacking away and wiping my nose while I am trying to present.  Not fun. Cutting out dairy has changed all that. And I love cheese so it had to take something big and not having any allergic reaction to the tree pollen etc. is a huge change in my world for the better. 

I have also been meditating and practicing being more mindful.  All of this has turned out to be a way to transform my inner life and in so doing my outer life. I am 18 pounds lighter, way more rested because Ellie is sleeping and I am making a point to make sleep a priority, and so much happier.  I feel like I am finally decompressing from 10 years of really hard times in some ways (good times too).  But let's be honest, when you have a baby early and almost both die in the process then proceed through 134 days in the NICU and through multiple surgeries, illnesses, seizures, dealing with back issues of your own, having the expense of transforming your home to be accessible, and on and on and on - there's a lot to decompress from. And stuff is still going on that is really challenging to do with Cerebral Palsy as Ellie grows, e.g., her muscles and bones not keeping up with her growth, scoliosis, hip displasia, and on and on. 

So how do you get renewal out of that?  From the inside out in my case. I thought - I can't control her not sleeping or the stress of the world but I can control what goes into my mouth and what I think. The first part of that is way easier by the way.  Choices for eating are much more explicit and easy to manage than choices for what I think. But I am working on transforming both to be more positive, hopeful, proactive, abundant and most of all nourishing (for body and soul). And it's working. 

Often preemie blogs end by the time the kid is 8 or so.  I understand that.  But I want to keep going. Ellie's blog has been a way to keep time with myself, reach out to others in hopefully a helpful way, make connections that have taught me loads. There's a lot to report on, on this end.  

I wanted to share some things that have helped.

Pictures:
1. One green juice and one carrot, ginger, beet root juice
2. Ellie on Easter morning finding gifts from the Easter Bunny. Fijit ears to replace the ones that someone pulled out....very exciting indeed!

Peachy Applesauce or Yes, I Would Peel a Boiling Hot Peach for You, My Love

Giving Ellie whole foods is a passion and an emotional precedent of mine.  It's one of the things I can do to help her body heal and be healthy. She has had a long journey to eating filled with starts and stops.  She has been on whole foods since she was 18 months - which took some doing as I have written about in earlier posts.  She has not progressed beyond purees.  However, in typical special needs, preemie parent style, I say, "I'll take it!"  After all, eating purees by mouth is better than no eating by mouth at all.  Additionally, a great many of her food sensitivities have abated and she is able to handle more fat and variety.

As such, I happily face the challenge of making her more, and more interesting purees. I know some of you out there may be thinking - why don't I just puree whatever it is we are eating. I have seen parents do that - the most interesting case where they were feeding their kid pureed bear claws (a calorie rich pastry), which resulted in huge blood sugar spikes and other unpleasant sequelae....not good.  Also, some things when you puree them are gross. I recently did it with a meatball and that was fine. Ellie has had Italian wedding soup pureed and that was fine too - but she eats things like that rarely and in small doses because of her reflux that is still a force in all our lives.  Simple foods that have great flavor and don't upset her stomach are the order of the day.  Like most working moms convenience is a necessity and the whole process took me about an hour.  However, I think the time I spent making her applesauce was well worth it.

We have been buying jars, and jars, and jars of applesauce for Ellie for years now. It was one of the only off the shelf foods she could eat - that and baby cereal and eventually coconut yogurt - so you see it's been a very short list.  However, two years ago I got a food mill because of the power outages from the hurricanes.  It's apple picking season in New England and a coworker talked about how she made applesauce. It sounded easy.  Though as a kid I used to churn applesauce out by the gallon using a food mill - I had forgotten all the other steps. Store bought applesauce is OK but its got a taste I just can't attribute to the ingredients listed on the jar - even the organic stuff. Store bought applesauce can also run you $5 for a small glass jar.

In short it was time to remember/relearn how to make homemade applesauce. The good news is, it's really easy. 

The equipment you need is a food mill, a big soup pot, a big bowl, and a slotted spoon.

Here is the recipe for Peachy Applesauce:

Ingredients:

Peaches

Apples

(I used 2/3 apples and 1/3 peaches)
Water

Step 1: Wash the apples then cut out their stems and quarter them. Put them in a big pot with water 3/4s of the way to the top.  Bring to a boil and then simmer until apples are soft - about 20 minutes.

Step 2: While the apples are simmering - put the whole washed peaches into a separate pot of boiling water. After 15 - 20 minutes extract the peaches and put them in a bowl.

Step 3: Gingerly with your fingers peel off the peach skins.

Step 4: Put peeled and pitted peaches and all the apple pieces in batches through the food mill that is positioned over a big bowl.

Step 5: Churn away.

Step 6: Eat lovely warm, potassium rich peachy applesauce. 

The peaches I used got so sweet and syrupy all on their own I didn't need to add any sugar. When I made applesauce with strawberries (cut off the stems of the berries before you throw them in with the simmering apples) I added some sugar to cut the tartness.

Ellie is enjoying the homemade stuff! 

I filled up one of the empty jars that I had been paying $5+ dollars for and there was still a vat of applesauce left over. I could calculate ounces and figure out precisely how much I saved buying apples at the farm and then making my own sauce - but suffice to say - I am saving a good bit of money and that taste I can't place with the store bought stuff is not present. Best of all, I have improved the flavor of Ellie's food. The flavor of food is what keeps her interested in eating it - which is a good thing.

Picture from top to bottom:
1. Boiled peaches cooling a little before peeling
2. The food mill filled with peach pieces
3. The big bowl of peachy applesauce
4. A smaller portion that Ellie consumed happily.

It's a Mystery

Sometimes I think my blog should be called something like "All the Gory Details" or "A life to make you grateful for yours" or something like that. It's the outside in thing. I have stopped hoping for people outside my world to understand. Those that will, will, and those that won't never will no matter what I write or what they see in pictures. How's that for a cynical view of prejudice? It's true of my students as well. Some are there in the Master's program to learn, some are there just to get a degree. I have trouble with the latter since I love my profession and take a personal approach to teaching such that I still care if they get it or not. That hasn't been driven out of me yet...this is turning into a cynical post and I digress.

What this post is really about -back to the gory details part- is the last few months and the conclusions we have come to. Ellie has been having a very hard time on a few fronts since August. 2009 has been the year to get off meds. Lots of calculated risks and believing in my understanding of my Ellie versus what the medical community has to say. Since January she is off: Cisipride for Reflux, Depakote for Seizures, Protonix for Reflux, and mostly off her Zantac. That's a lot of change.

Since August she has not been sleeping well as you may have heard. We thought it was her brain adjusting off the Depakote- and so it may have been initially. Then when we had the mishap with pharmacy we pulled the protonix - which is a proton pump inhibitor. Then we realized that she was growing out of her g-tube and the bad pool water at her school and possibly some sand from all the beach going in the summer just made it worse. We tried two different sizes of G-tube and nothing worked. Then she started to have these episodes - one in August, two in September, two in October and then a week later in November where she would vomit and then not want to eat and not hold much down and be very sensitive to light and sound and irritable and exhausted. She has missed more school because of this than not. The whole episode would last for 4 days. The last day and a half where she would be doing better but just exhausted from the first two and a half days.

She missed a lot of school. I missed a lot of work. The world keeps moving forward at the most unforgiving pace.

She also turned 7. I need to do her annual montage but that will have to wait until I catch up a little more and until she gets on track.

The day after her birthday on November 10, she vomited, was exhausted, would want to play with her musical toy but the minute she held it would push it away and bury her face in my chest. Holding her didn't help. She didn't want to eat - but unlike a stomach virus - was able to hold down small volumes of rich food- avocado and coconut kefir to be exact. She would vomit up anything else. So the tummy bug / back to school virus was not holding water any more.

Then on Tuesday night she was up all night - screaming. Why we didn't bring her to the hospital at 2am when the worst of it was going on I have no idea. We did check her eyes and they dilated fine and evenly. She wasn't vomiting. She was just in pain. At 8am I brought her to her pediatrician. We realized that this was not a situation we could handle at home anymore. It wasn't some sort of repeated virus and it wasn't her g-tube - which was still in rag order because her stoma for the first time in six years was not healing as it should. But this was something else.

The pediatrician looked in her ears, eyes, throat (making her vomit) and looked concerned when I reported Ellie's weight loss which was roughly 5 pounds since August from so many weeks of these episodes. She had, had a little roll around the waist and some meat on her arms but now she was very thin.

Upon discerning that there was no ear, throat infection, no swollen glands no rashes and all the usual suspects he sent us across the street to Children's ER. In the ER they put in an IV (God bless all Nurses who are good at IV's on an ex-preemie's veins) did a shunt series and a head CT. They are very efficient there and got Ellie in a small dark room right away which was good considering she was still in a lot of pain. I chose not to giver her Tylenol (which I had been giving her when she was having these episodes) because I didn't want to mask any symptoms - because at this point we thought it was her shunt.

They gave her Zofran for nausea and this allowed her to sleep. We saw the neurology team, the neuro surgery team, the pediatric attending. The scans came back showing nothing. Theories were thrown around. The attending pediatrician said Migraines. I called Dave who was at work and asked him to search migraines. He did and found many, many reports of people who were long time users of proton pump inhibitors (prilosec and protonix) developing migraines either after quitting the drug or if they were over 3 hours late in taking their dose.

The problem was that because of Ellie's history and complex shunt system, no one wanted to believe the migraine diagnosis. The young Neurology resident was annoyed at the Neuro Surgery team for writing Ellie off so quickly, he was sure it was intercranial pressure.

They admitted her Wednesday night after 10 hours in the ER. I said I did not want to take her home with all of this going on. It was beyond our ability to help her because we were trying all the things we usually did and she was in pain and not eating and the weight loss had to stop.

They were reluctant to feed her if she was facing a brain surgery, so they kept her on IV fluids with some sugars in them and electrolytes. Dave and I took turns staying with her. She was there to be observed, hydrated, and tested. All her blood tests came back normal. White blood cell count was normal and not elevated which ruled out infection. They did a 24 hour EEG that came back normal - which was excellent because it ruled subliminal seizures. The nutritionist took away my print out of Ellie's diet with all the proportions and exactly what Ellie is given each day and gave it a full analysis. The very cool news is that Ellie, when she isn't sick, is getting 1,700 calories a day, enough fat, vitamins, and protein. Go figure and not any synthetic formula doing any of that. I have to say nutrition has come a long way since we first went to them at Children's in 2003. Then they thought we were nuts to go on whole foods. They had us try every formula in the book and when those formulas made Ellie more sick they said we were administering them incorrectly. It was Linda Scotson who gave me the guts and the know how to transition Ellie on to whole foods.

But this time the nutritionist looked at Ellie's diet and didn't bat an eye. She knew what coconut kefir was, shared the same concerns about Hemp and did the research on that for me. She was awesome. She respected our values. AND she gave me a great resource I have on order about homemade blended formula. She had a few suggestions and then she put in writing her results such that I had medical proof I could give to Ellie's doctors to show them that I wasn't starving her of protein and nutrition because she wasn't on pediasure or meat. By the way turns out that Hemp milk is very low allergen and one of the most bioavailable proteins out there. I put Ellie on it to replace some of her rice milk and she is doing beautifully. It was easily the best experience I have ever had with a nutritionist. And it was very validating. Dave when I showed him her report said, "Oh thank god! That's a relief!" I think now he might actually believe I knew what I was doing...

Our hospital stint did garner these two good findings - the normal EEG and the blessing on Ellie's whole foods, food combined diet. But it still did not answer what the heck was causing Ellie so much pain.

It came down to two camps. The migraine camp and the sub-optimally working shunt camp. The test they wanted to do to prove it was the shunt periodically malfunctioning was to put Ellie on Diamox which would reduce her body's production of Cerebral Spinal Fluid, such that if she was having intercranial pressure her symptoms would stop. The doctors who wanted to do this said there were hardly any side effects to the Diamox, but if you Google it you will see that is wrong. AND what if it isn't her shunt? What if messing with the amount of precious CSF bathing and protecting her brain could make the shunt clog? It was so difficult to get Ellie's shunt system working to begin with (4 surgeries) that I was very leery of this. Dr. Lillianna Gumnerova, who is Ellie's neurosurgeon and an attending at Children's, came down and examined Ellie and looked at all her scans and was very clear that if it was Ellie's shunt her symptoms in between episodes would not totally abate. Malfunctioning shunts just get worse. Since this is where she lives, we were inclined to believe her. She was also the only doctor out of all the others who was able to get Ellie's CSF to drain properly to begin with so she looms large in our world.

The other path was to try a drug called Periactin for migraines. A friend and a mother of one of Ellie's school friends told me about it. Turns out that antihistomines are great for migraines and this one especially. Also, it's a really old drug - tried and tested and the side effects are minimal. Ellie's pediatrician was coming by a few times a day to check on Ellie, which is how concerned he was and he's awesome! He is the only doctor that crossed all the teams. And they listen to him there. He wanted to go the Diamox route and knowing him and trusting him as I do and respecting him too, I asked him about the Periactin and couldn't we give that a try first? It takes a week to kick in, which will be this Sunday. He agreed with the understanding that if she had any symptoms - vomiting or the massive fatigue that we were to bring her straight in. This was the plan when we left on Friday night. So instead of driving to Virginia for Thanksgiving with my family we stayed put. My same friend who recommended the Periactin also invited us over for the holiday and it turns out she could give Martha Stewart and any Iron Chef a run for their money. Definitely one of the best Thanksgiving Day meals ever!

Ellie has seemed a little tired which is one of the two side effects they said she would have. The other is greater appetite. She has both. From Saturday till Wednesday Ellie slept better than she has in months. She is keeping all her food down. She was up Thursday at 4am because she was hungry so I gladly fed her. And she has been playing like there is no tomorrow. It's like she has to catch up. She wanted to sit in her princess couch and play with every toy she owns. She is not quite back to herself yet. She still is slightly irritable and the overhead lights bother her a lot. This Sunday it will be one week so we will see if the symptoms abate with the Periactin at its full effect. If that does not work we will either try the Diamox which still worries me or I will push for an MRI. That's invasive for sure because they have to give her anesthesia and intubate but much less invasive than exploratory shunt surgery and might weigh equally with the Diamox trial...maybe - putting a kid under is hugely hard on the body...ugh. I hate these choices we have to make. In the mean time I am working to feed Ellie as much as she can take. Her little feet even lost weight such that her AFO's are too big and she went down a diaper size. It was a year's worth of weight gain and all the moms of preemies out there know what a bummer that is.

That is how it's all going these days. We are feeding her, watching her, staying close to home and hoping for migraines. How crazy is that? Wishing that it was a migraine.... This whole experience is about picking the lesser of two evils. If it is migraines then hopefully in a few months they will abate if they are from the protonix withdrawal though migraines do run on my side of the family. And for the doctor that said that migraines don't last as long as 48-72 hours - you are so wrong.

All of the above is why I think I may change Ryn Tales to "All the Gory Details" (you never wanted to know).

At the end of the day I am very thankful that Ellie is here and that for now it looks like her shunt may be ok. At least we have a game plan or two and thank god for the wonderful medical community that does disagree in a healthy way and especially thank god for all those doctors that do listen to parents (nutritionists too). Ellie is better because of all of them. I am grateful too for my friend Holly who is so smart and gives me verbal and moral ammunition when I am out to push back when I need to, because it seems like I need to a lot sometimes, much more than I would prefer.

Ellie turned 7 this November 9th. She it still learning and growing and developing and the sweetest little girl. I am thankful I get to be her Mama.

Crushing Worry

Some times being a mother just truly sucks. I feel so inadequate for the task today.  Ellie has been pale and tired since the Cranial Sacral weekend intensive. And in the afternoons her eyes are in a somewhat sunset position. Sunset position of the eyes can be a sign of pressure on the brain. Her head circumference has not changed, she is not vomiting and her eyes dilate fine...

Today if she is like that in the afternoon it's off to the doctor.

She has been perky in the mornings though not at her baseline. The CS people say she is working stuff out and that it's normal to be tired. Dave thinks it's neurotoxins that have leached out of her legs from the botox and into her brain. He swears this happens every time we do botox which she had two weeks ago but has not needed for one year...

I am really kind of done with all interventions at this point except I think The Scotson Technique which is so so so very gentle. Cranial Sacral as it turns out is NOT gentle. Botox is NOT gentle. I think all these things have caused Ellie's body some shock which is draining her further. 

We have not been doing the Advance therapy for over a year. It takes time each day and I have been working and we have been making strides on other fronts with Ellie. But I am going to start it up again. *I want to bring them here to Boston to show me the latest advances in that therapy which has helped, along with the nutritional stuff, Ellie the most out of anything I have tried. It is restorative versus aggressive. It seems to honor the child's body in a very gentle and congruent way. It is also the only thing that has not produced ANY bad side effects. Remember in earlier posts how I described all of children's medicine as choices between lesser evils? Well nothing has changed...

*If you are interested in coming to the sessions that we have with them email me. I am thinking that we will do it this summer. When I get a date I will post about it here.

I am overwhelmed and crushed under the weight of my choices for Ellie. Managing and safe guarding someone's precious and deserving and beautiful life is tough going. I feel that weight right now and can't help but feel I have been having missteps for a year. 

But here are some of my recent discoveries on the nutritional front that are a good evolution of my understanding of how Ellie's intake of nutrients can help her heal her brain - which is how I approach anything that goes into her body:

Coconut oil. This is a saturated oil - as it is solid at room temperature - it melts at 76 degrees. BUT recent studies have shown not all saturated fats are created equal. Coconut oil is a good fat: anti microbial, anti viral, antibiotic.  It has a lot of great stuff in it for the nervous system too. So I have replaced Ellie's daily dose of flax oil with pure, organic, UNHYDROGENATED, unheated coconut oil that I bought at Whole Foods.  She is doing great on it.  It is also very healing as a lotion for the skin and one of the purest things you can put on the skin. I have been using it as a night cream and it's awesome. Just make sure if you try it you get the organic unprocessed stuff that I highly doubt you will find at Walmart.

As it turns out almost all Flax Oil on the market has some degree of rancidity. Figures right? I had picked Flax because when Ellie was younger the fish oil seemed to make her reflux...  Ugh. Mama -0 / universal forces of darkness - 1

So now she is back on Fish Oil and it is going well - just 3cc's per day. You can buy fish oil that is "Pharmaceutical Grade" which means that all the mercury is processed out of it.

A big realization I am having is that a gentle approach is so critical to my little girl whose system is delicate. And when I say delicate I don't mean it's not strong. But think about it. Ellie has never eaten anything fried, processed sugar, caffeine other than in the NICU in the first two weeks of life. Her system is really sensitive and she is hypotonic inside and out at the moment. And she is small for her age - though I am proud to say she is now on the second line up from the bottom on the typical kid, NOT born three months early weighing 2.9 pounds, growth chart. When I lift her these days I have to go more slowly - her muscles have not caught up to her weight and neither have mine. Slow and easy and careful is how I am feeling these days. Having a kid with this much trauma and danger has had me on an adrenaline rush for years and I am depleted from that pace. I think the road now has to be a one about pacing. Which is a nice change. When someone is on the edge of death there is no time for slow and gentle - it's all fight and fight some more. We were there for a long time. Realizing we are not there now is a good thing as well as an adjustment. I always say to Ellie when I have to do something to her that she seems hesitant about - like brush the snarls out of her hair - "Gentle Mama" and make the sign for "touch gentle" and she relaxes. I need to remind myself to be gentle too on every front especially with my outlook on life and how to balance it all. I guess Spring is a time for transition and it takes an angry burst of energy to break through the frozen thresh hold to grow and evolve. That's where I feel I am at, at the point of changing once again. Change is hard.

In my next post I have to tell you about FPIES. Which are food sensitivities that show up somewhat like allergies and only a few doctors pay attention to.

Love and kind thoughts to all parents out there under the crushing weight of raising a child with multiple medical issues.  

Addendum: I picked her up as school today ready to go to the ER. But, though she is tired, and her eye lids slightly droopy, she did not infact have sunset eyes. Dave recalls clearly that every time after BOTOX that in roughly 10 days Ellie gets really tired like this. Maybe he is right that it is taxing on her and after that amount of time it leeches into her system. Great right. Dr. Webster always says the only risk of the botox is risk of no effect. I think he is wrong. None the less, taking her to the ER where they will put in an IV and subject her to radiation is something we will wait on. She was able to pay attention. She was signing the entire song "A You're Adorable" to me on the way home and in the absence of no other symptoms (though fatigue is one) I think I will keep a close eye on her and see. 

Feel like I am walking on the razors edge - again. Don't think I will EVER get used to it.

Peeling Grapes / Food Trials: Age 5

Ellie has perked up a bit. I need to get her Depakote level done this week though, because she is still tired. Though she could also be tired because food trials are hard on her because if we give her something that doesn't suit her she vomits and that takes a great deal out of her. Here is our progress so far:

Tahini - nope, she could not digest this at all. I did give her too big of an amount - 2 tablespoons. But she was so sick from it I hesitate to ever try it again...Bummer- lots of great protein and minerals in tahini which is the paste of sesame seeds.

Goats milk Yogurt (plain unsweetened) - tried for 7 days no extra mucus no prob! Yay! Something I can add to her diet to help her intestines and maybe constipation.

Infant Buffered Vitamin C drops - nope. Gave her 5 cc's or one teaspoon which made her vomit and curdled the contents of her stomach. Bummer too because vitamin c is supposed to help you get the most naturally occurring iron out of your milk and eggs.I have only found one liquid form at the store. Time to search online... the one I tried used fruit purees to sweeten it because it's for babies who will eat it by mouth. It might be that it was too sweet for Ellie and / or that she did not fair well combining fruit and animal products...

Amaranth - she has this from a baby cereal so it's flaked. So far so good! Amaranth is not the seed of a grass which wheat is and rice and oats, i.e. most grains. I wanted to try her on something that wasn't and see if she would have less mucus. She can handle it at least in the flaked form! Yay! Another grain and one with loads of nutrients!!

Blueberry - no prob.

Grapes - makes her slightly gassy after having 10. So need to keep amount smaller. I feel good about giving her grapes raw (pureed after skins have been removed). They have good fiber and are supposed to keep the bowels moving. I haven't seen it help all that much with Ellie's constipation - but the live enzymes in a raw food should help support her entire system. Note I have her these alone on an empty stomach (thinned with water through the g-tube).

So right now we are in a break from food trials. I will try her on a couple more things in a couple of weeks.

Next Up:

Lamb (I want to expand her variety of protein that she can eat - if she is ready)
Vegetable soup made with homemade (low sodium) chicken stock
Beans: Great Northern

Here is a pretty good book that is giving me some ideas: Super Baby Food I say it's only pretty good from my perspective trying to feed Ellie who has serious issues because she does not practice food combining. However, great approach in general and lots of ideas and good information.

Ellie is on vacation this week. So the food trials are over and it's time to have some fun. Pictures to follow.

Sensitive

Her system is sensitive. I know that. It's frustrating. I don't do all the nutritional gymnastics because I like to. I do it because I have to. It would be so great if I didn't have to worry about food combining, the richness of the food, etc. Some days there is nothing I wish I could do more but to share the food I eat with Ellie. But it's not possible because so many things make her sick. Tonight is a case in point.

I have been feeling in my gut that her diet needs to change. I have stopped her from being vomit baby and I even think the Slippery Elm is helping her intestinal tract heal. I definitely notice her smelling less acidic after she has it. So all that is good progress, has kept esophaegeal cancer at bay and transformed her into a relatively healthy little girl from the very sick little baby she was.

However, there are still big challenges like the fact that her motility is snail slow, if it moves at all on it's own. I am seriously worried about her little beleagured liver. She is on Cisipride to increase her motility, Zantac to limit acid production, Protonix to inhibit proton pumps, and Myralax to keep her moving. With all that she still deals with chronic constipation and extremely slow food processing. Her brain injury resulted in a hypotonic type of cerebral palsy in all her limbs and especially her trunk. That hypotonia (or low muscle tone = muscle weakness) doesn't stop on the outside, nor in the big muscles like the biceps, but extends to her whole body right down the the sphincters that control the speed of her motility/digestion which effects the absorbtion of nutrients and flushing of toxins from her system - very serious important business to get right for health, quality of life, development in a child as well as overall longevity. With the diet I have had her on, along with all the meds, I have seen her stomach empty faster than ever before, which is still slow compared to how it should be. So that's good to an extent.

But we found out yesterday why, why, why she was so sluggish and pale and getting even more floppy over the last two weeks. Her Depakote(Valproic Acid) level (she takes this for seizures) was 165. That is 65 levels higher than the top of the therapeutic range. And we have been giving her the prescribed dose each day. So no ear infection, no mysterious virus, no brain damage, but drug overdose. As I write this my brain is saying the f word over and over and over. I am mad at myself, mad at the whole thing. f word fword fword...

We caught it, it's coming down. I think it went up because she has been very constipated so her Myralax dose has to come up. Also she has grown but because she has been doing so well in terms of digestion we did not increase her Cisipride though we could have but opted not to - why - see comments about her liver above.

Now we are adjusting/reducing her Depakote dose and on Monday I have to have a long talk with her GI doc to take another look at all those drugs. We got a new gigantic bottle of Myralax and gave her some to which she produced a rabbit pellet consistency small bowel movement.

Below I will describe the drug interaction tango we are performing:

Ellie is on time release Depakote capsules because the Depakane syrup (aside from being totally acidic and horrible on her tummy) was very unstable in her system and she had a couple of break through seizures on it. So we switched to the crystals, which are way easier in her stomach and stay in the system longer - which has it's pluses and major minuses. The Depakote is effected by her Cisipride and her level of constipation as well as weight gain. Increase the Cisipride, the Depakote level will plunge. If she gets constipated it will climb. If she gains weight the Depakote level will drop unless the Cisipride is raised. There are even more dynamics except my brain just went into the fword mode just recounting what is here. and again fkfkfkfkfkfk.

After we found out that her level was through the roof I started reading up again to try to find ways to try to jump start her motility using nutrition/food. Not that there is anything on this specifically so I have to look at different food and how binding they are as well as if they are super foods like garlic and if that will help. I am seriously thinking of juicing small amounts of parsley for her and trying her on Amoranth instead of using rice milk all the time... It feels like I am cutting my own trail through the wilderness that is Ellie's specific nutritional needs. Cutting a trail to an unknown place with unknown benefit.

The fact is it's not enough anymore that she is not vomit baby. I want to wake up her digestive system. And that is not going to happen on the diet she is on, as good as it is it is starting to feel limited. She is 5 and half now and gained 10 pounds last year as well as 4 inches in height. She is actually on the growth curve for heigth and weight - at 2% (the regular growth chart, not the one for CP kids). My point is she is getting bigger and I feel a need to keep up with her. I don't want her to be so dependant on all those drugs.

I want to introduce another protein source specifically because she is on allot of goat's milk and milk in general is binding to the chronically constipated especially. So I gave her a little tahini (sesame seed paste) with her peas tonight for dinner, against my better judgement (note to self - stick with past MO of only trying new foods in the morning). Three hours later she vomited up the entire dinner, completely undigested along with a huge amount of clear mucus. When you see that much mucus in someone's vomit it is a sign of food allergy. Now Ellie has been tested for nut and other allergies and come out negative. But we are going to have to revisit those tests.

So poor Ellie! In the last 24 hours she has had to have a urine catheter (to take a sample) two blood tests (so she is bruised on both arms) and vomited up her entire dinner, as well as feeling exhausted because of the elevated Depakote level. fkfkfkfkfkfkf!

I feel like we are back as square one, or really square three. And I have to add foods more slowly, like you would with a baby, try a teaspoon at a time building up slowly. Whenever I try to rush it with Ellie, it never works. I clearly gave her too much tahini. So now that is off the list. Bummer too because there are 190 calories in 2 table spoons full of nutrients. fkfkfkfkkf!

It's going to be a long night. I tried to give her some water after the first humongous emesis and that only produced more emesis. So I am waiting to give her more. She will inevitably wake up in the middle of the night - hungry as hell - and fair play to her. And I will feed her and hope to god she can keep it down.

Sensitive.

Frustrated.

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.

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!).