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.

First Mother - Daughter Trip (anything really)

Ellie and I are on our first road trip just use and another mother and daughter. Our first mother-daughter thing ever...it's kinda cool.

She was a trooper on the 6.5 hour drive to Vermont. Google said it was only a 3 hour 45 minute drive but then factor in we got lost and had to stop twice - that's a really long trip. And I wasn't sitting next to her like I normally get to. So Ellie played and I got a crook in my neck. But after finally getting into the hotel and giving her dinner and letting her sit on top of me (because I am the human couch) and play with her toys she was much better and slept really, really well. She woke her sunny self.

We are here for a three day cranial sacral intensive workshop. From 9-12:30 and then from 1:30 to 4  a therapist will work on Ellie.  It's a spiritual thing too the way the therapists are approaching it. They used a  circle and talking stick to open and a short meditation and then on with the work. Ellie lit up when she saw her therapist, Amy. She was delighted. And Ellie isn't delighted falsely. She no room for anything but genuine reactions at least at this age. Ellie as been working hard. She kept drawing the therapists hand to where there is a non-working shunt in her head pressing on her occipital lobe. Together she and the therapist gently tried to shift it (fractions of millimeters) to relieve the pressure that causes Ellie to be dizzy and not be  in total control of her eye muscles. I really hope it worked. They also worked to remove the energetic imprint of that botched surgery. I need to let go of my own guilt about that too so that I don't hang on to it.

They were also working on some of Ellie's birth trauma which is not in short supply. And when I say 'they' I mean that is where Ellie decided to go. It sounds weird but it is a collaboration. We have done cranial sacral work with Ellie when she was 2 to age 3 and that got her eating by mouth. We have been doing it once a week for a year to help her again with everything. Growth is hard on her because of her Cerebral Palsy.

The whole experience after the first four hours has shown me just how connected we are to our children. When they were working on Ellie's birth trauma I got a pain where I had my spinal.  When Ellie was struggling with the emotions that came up around the shunt I felt it too.  That's the deal though isn't it if you really love your child? The good with the bad. The pain with the pleasure. You are never really free again and never alone again either. 

It's amazing to see Ellie work so hard and stretch and grow into her full self. She is so relaxed now and sleeping so peacefully.  Pictures to follow.