What goes up must come down

I'm going to be passing this one over to my mommy as I am told that I don't understand what the big deal is about all this eating/non eating and mostly non eating...

Ethan Eating Yogurt with Grandpa at the beginning of the Operation

You may recall from Ethan's previous post that the first week and a half of Operation Starvation Dehydration brought with it some seemingly positive results, meaning Ethan was eating more goldfish crackers and cheese.  He didn't try anything new and was still very cautious around food.  He did increase the quantities of his"go to" food items but only for a brief time.

Flash Forward to a week and a half ago... The downward spiral begins.

Ethan quickly started refusing virtually any food or liquids.  At first he was down to taking maybe a handful of snack foods over the day until it was: No minigo, No formula, No goldfish, No cheese, No veggie sticks, No Water.....  For nearly four days, he lived on only 6 oz of formula each morning and refused anything else the rest of the day.   By the end of the fourth day, I had decided, that was enough, I am done being a horrible mother to my buddy boo, and I tubed him 5 ounces of pediasure and have resolved myself to keep tubing him some extra calories. I should mention that through all this not eating/drinking for days, Ethan was still the happy, playful child as he always is. He just didn't seem to notice or be bothered by it.

One of the frustrations is that we went into this whole scheme without any support for Ethan or myself, there was just the hope that Ethan would feel hunger and become a normal child and eat.  Not only did I get to starve my child but he had no therapy to guide him through the process. It was like sending a blind person down the freeway led by a blind seeing eye dog to find a leprechaun.

With the situation having sky rocketed, and me tube feeding my child under the cover of darkness hoping he didn't awake to see what I was doing, I began to research another option.  I spent what few precious moments I could muster between syringe squeezes to look into intensive feeding clinics.  The existence of these programs are very few, and far away.

A very brief overview of the intensive feeding program.  The programs generally last 4-8 weeks, Monday through Friday, full therapy days.  Most of the programs involve a multidisciplinary approach including behavioral, sensory, and starvation techniques.  The programs are only available in the United States and Europe, in all that I found to date, there are no intensive available in Canada.  I haven't mustered up the courage to ask for quotations from the program providers after talking with a mother who attended an inpatient intensive feeding program at a cost of $250,000.  I want to keep the dream alive for a little longer.

Blasted Canadian heath insurance benefits.  Like really, what's a $500 limit for speech and OT therapy going to do towards a $250,000 bill.  When can we move to the states?

On top of it all, my husband has been working 7 days a week, leaving me at 7:30am and returning after 10:00pm to try and make $250,000... wait... before tax that's more like $400,000... See, I can be an accountant too!  The real reason for the long hours though, is Shawn is an accountant and really wants to keep his job and provide for us... since I have no job effective September. La La La, Leprechaun.

This brings us to 8:30am Feb 25th when I took Ethan into the clinic to "sit on the scale and see the numbers" which displayed 21 lbs 14 oz.  That's a decrease of a half a pound in a week and a half or 2% of his gross body weight (can you tell I'm missing my husband).

Ethan enjoying a fake picnic

So the new medical plan: 
We're going to make a slight course correction by making sure Ethan obtains minimum of 16 ounces of his formula per day either orally or via tube.  Tube feedings are only sanctioned during periods of unconsciousness, because he'll know.  The focus is still on increasing volumes and willingness to eat so it doesn't matter for now if he only eats the same things he's used to so long as he eats more of them.  I have been trying to do more therapies myself with him to make him more comfortable with the processes of eating.  Ethan and I now enjoy regular purple and pink picnic basketing where he gets to fake eat and fake drink which he loves. 







Lastly, please recognize that today is Rare Disease day!

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. - See more at: http://www.rarediseaseday.org/article/what-is-a-rare-disease#sthash.pnz2i3pU.dpuf

A rare disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

Operation Starvation-Dehydration is a go!

Hi All,

Well it's been a little over a month since I last brought you all up to speed so here goes.

First, let's talk about "Operation Starvation Dehydration".  At our first weigh-in of the new year, I was down to 21.67lb and the doctor was getting concerned that I wasn't growing.  In addition, I wasn't eating as much and being tube fed more than half my intake on most days.   Since we weren't making any progress in either improved weight or improved oral feeds, it was time for more drastic measures.  Doctor Rosner's last ditch orders to kick start my progression were "Stop feeding him..."  What?  What was that?  "... through the tube."  <<insert ominous music>>

Well, you read that right, we've been on operation starvation dehydration since Monday January 28th and so far here's a summary of the results:

It started out as expected, I didn't eat very much and drank almost nothing.  I slept a little more than usual but otherwise I was my normal self.  The next few days showed glimmers of progress, I started to eat some more solids, I was eating minigo yogurts again, I even drank my morning sippy without argument.  Overall I was still only taking about 10-12 oz of formula (half of what I should have). I was eating the same solid foods, but more volume.

By the end of the first week my mood had changed to grumpy as my tummy was growling and I didn't know how to stop it from feeling so painy. The plan was to meet with Dr. Rosner again on Thursday to check my weight, do some blood work and generally discuss how things were going.  Thursday Morning came and I was going to be ready for it. I held back my poop, and began the day with an 8oz sippy of formula!  As many of you know, I am accustomed to 6 oz bottles and usually won't take the whole thing.  But 8! 8 full ozs! That's awesome!

When my bum hit the scale, we watched and waited.  My weight came in at 22.33lbs! AN INCREASE! I was in the midst of operation starvation and didn't lose weight! booyeah!

Dr. Rosner threw open the door and exclaimed "What are you feeding him? Lead?" She was happy and as surprised as we were and concluded that the plan should remain unchanged.  As such, we're still on the path of no food if doesn't go down the old pie hole.  I'm still eating plenty of my crackers and cheese, not nearly enough fluids but definitely on a positive road! Will update you again soon!

In other news, let me take a minute to update you on our goals from last time:

Physiotherapy:

Since my walking skills have continued to make leaps forward, my physio appointments have been pushed off to every 6 weeks instead of every 2 weeks.  I still can't squat to play but I can stand up and sit down with the help of a piece of furniture.

Texture Therapy:
Well I haven't had any additional formal therapy in this area however, mommy and daddy play macaronis with me on the floor in the living room on a regular basis.

Speech:
No news yet on the "Target Words" classes for my folks but I have started to blurt out the occasional "Aye" which means hi! My sign language has increased to include up to 15 signs now.

Feeding:
Lynn (my dietician) read my food journal memoirs and said that it was a good start. Onward and upward, the plan is still Eat Eat Eat and to increase my liquids. She had suggested to get me to eat fruit. My parents laughed as my fruit interaction has been to scream and cry when it is near me.

School:
The goals for school of accepting foods remain the same and with the help of the girls at daycare writing down my food intake, I've been making strides there too! I even eat a yogurt while I'm there, although I've declined on the formula more often than not.

No word yet on the release date for the "average height and small waist" niche clothing line yet, but my mommy did buy me 9 month old pants and they don't fall off me so much.

All the best my friends, we'll talk again soon!

-Ethan

P.S. I ate a piece of popcorn with buffalo wing seasoning on it and didn't spit it out, how cool is that!