Look what I can do!

Hi All, Ethan here!

When last we spoke I had just enjoyed my second birthday and

a successful weigh in showing some moderate but definitely positive gains.

Since then, I've been hard at work on my cardio, hand-eye co-ordination and my balance.  I have been showing off my soccer skills regularly by kicking my X-men ball around the room and back and forth to daddy.  Whenever I give it a good shot I clap and laugh uncontrollably!








I've also taken to throwing some pretty mean shots with my orange spinety ball and plush pastel rainbow ball!   I can bend down and pick them up with the greatest of ease and launch them across the room.  Again, whenever I give it a good shot I clap and laugh uncontrollably!








Now hold on to your hats and behold the two most impressive new physical skills I've picked up.  The first is my new found skills as a dancer.  Now I don't move like those folks on dancing with the stars that mommy watches but I've started to get my groove on in my own little way.  Watch daddy, Pengy and I grooving and strutting our stuff!

 Finally, without further ado, I am so happy to report, that today, May 19th, 2013 at 2 years, 26 days old, I stood up all by myself!  Man the floor is a long way down!  Hope you all like the video! 

Make sure to tell all your friends how strong I am!!!

Until next time, dance a little dance and just have fun :)

Happy Birthday to Me!

Hello All, Ethan here!

As I'm sure you all know, I turned 2 on Tuesday (April 23rd)!   It was a day much like any other that started with gifts and singing! Mommy, Daddy and Grandma took me to Montana's for dinner. I was told that I would get a free meal, as it was kids eat free day. There were so many families with children there, that we waited over an hour for our food! I was so good though. Finally my canoe box showed up with my fries! This was shaping up to be a good birthday. Yum!

Back on the weekend, Mommy, Daddy and I took a drive down to Grimsby for some birthday photos with my old pal Emerson!  The photo shoot was scheduled for one in the afternoon, just in time for my usual nap.  I did my best to make the photo shoot smooth and we did get a few decent shots but really all I wanted to do was play cars with my buddy Emer.  After the photos we joined the Rutledge clan for some DQ cake and some good company.

Yesterday was my checkup with my pediatrician and my dietician. It was very busy today so my vitals were conducted in the hallway while we waited for a room to be free. finally a room became free and I was starting to become very excited for my turn to sit on the scale to see the numbers! 3...2....1....
22lb 14 oz. I had gained 100g since March. Hmmm not sure how that fairs yet....
Dr. Rosner and Lynn came in, and they were both happy with my weight gain. Nothing significant but I am still on my curve so they are happy. What they are not happy with is my lack of a variety of foods. So here we are at a cross roads again.... Sigh... I just have to start eating more foods. My next appointment is in 2 months, and I hope I have some positive news for my Dr.

A Field Trip to McMaster ER

After the fiasco on Friday night where no one in our local K/W ER knew what my PEG tube was and what to do, we were told to contact my Pediatrician Monday morning.

Mommy made the call, and Dr. Rosner had suggested to contact CCAC (which is the community care access center) and if they can't help us, unfortunately we would need to make the trip to the McMaster ER.

Mommy spent her entire lunch hour getting passed around to different people within the CCAC network since no one could answer her question "Do you fix PEG tubes? Is a nurse able to come out and fix?" Finally, after an hour of getting passed around the last person asked one of her colleages, to which the answer was "No, we don't do that, but if you need a nurse to come out on a regular basis to check on him, you can have your doctor submit a referral." Thanks CCAC even if you lied to me about not being able to fix PEG tubes, my confidence in you has decreased more that it already is! So McMaster it is. Mommy made the necessary plans to take me on Tuesday. Even better my Auntie Heather offered to come with us.

Tuesday rolled around and we left house at 8:30am, picked up Heather and went on something called a "road trip". Little did I know where we were actually going...
Mommy took forever to park the car in the parking garage, I didn't think we would ever get out of the car and stretch my legs.

We entered this building and as soon as I smelled the familiar smell of McMaster Hospital I knew I was in for something to remember with this "road trip". Mommy checked me in and we began the wait. I heard my name called from somewhere behind the wall, I took off, maybe this person is here to save me! But alas, he is not, he was another Triage man wanting to squeeze and prod me. Since I had already been through this may times before I knew what was coming and with that the check-in was complete.

Watching the Incredibles

We got called back into the ER where I was set up in my own room, with get this folks... a flat screen TV! No sound, but at least I could watch the colourful pictures roll by. By the second viewing of a soundless "The Incredibles", we were finally seen by a resident on the general surgery team. He took a look at my tube and him and Mommy tested it with a bit of water to find out where it was leaking. He left and brought us back a roll of waterproof tape. He said that they will patch the leak until they can get me an appointment with Dr. Fitzgerald. (He was the surgeon that put the tube in). He said that they run clinics on Thursdays so he will be back with an appointment card. Mommy asked if there is anything they can do today so we don't have to leave and come back, the resident said no I would have to have an appointment because this isn't an Emergency so all they can do is tape it up. He proceeded to do this and left to schedule me an appointment.

20 minutes later he returned with a lady in scrubs, she took a look at my tube and said that it comes apart and we can just replace the end. She told the resident to take the tape off and she showed us and the resident how to take the piece out, then put it back together to search to see if they had that piece in the OR. The resident returned with the part and 30 seconds later I had a new end and a fixed tube!

Mommy asked if they had an extra that we could take home and he said that they are really expensive so they can't give them out. However, Mommy knows what it looks like now and figures she knows where to get the piece from in town.

Oye, some adventure, at least it ended with me NOT in the Operating Room.

The Misadventures of Ethan Reimer

What would an adventure be like without the misadventures.....

I am happy to report that since my last post I was eating like a champ. Nothing new, but definitely more volume of my accepted foods, plus I was taking my "goal" of 16oz of formula daily via my mouth. Things were looking up!

Judgement day had come, I was waiting patiently at the outpatient children's clinic at Grand River with my Mommy. Mommy was rushed in the morning trying to get me ready for my appointment and had forgotten my diaper wipes. Not a problem, I never pooh in public.
I looked up at her with my big blue eyes and a smirk the size of my face. Not 1, not 2, but 3 giant juicy farts later and everyone could smell what the Ethan was cooking. This was the worst I had smelled like in a long time.

Ethan and his appointment card. You can also see the "algae colour" in the background

Not a problem, it's a children's clinic, they must have diaper wipes. Right? Wrong! They have face towels. I was called into the room, my diaper was changed. I could tell it was incredibly gross as mommy yelled "it's incredibly gross!" I was weighed, and even after this fiasco I saw 22.5 flash below me in big red numbers.

Dr Rosner and Lynn entered the room and immediately commented on the "smell". Mommy told her that my pooh was the colour of the fish sticker algae behind me on the wall, accompanied by all these white things in there as well. Dr. Rosner, said that it sounded like Giardiasis, and asked mommy if it had been going around my daycare. Nope, but ringworm is, and I definitely don't have that.

Dr. Rosner commented that she liked my gains and for me to keep it up. She gave  me an appointment card for get this, ladies and gents.... 1 full month later! The day after I turn 2. No more bi-weekly visits for this boy.

Since everyone was getting too comfortable with my gains, I of course had to shake things up.
We enter the misadventures of Ethan Reimer....

The next day I woke up and burped in Daddy's face, yum rotten egg burp. I continued this for the next few days, along with my rotten egg farts. The smell was coming out of everywhere. I also have not eaten anything since judgement day, (we are coming up on 7 days now). Don't worry folks, I have been tube fed, so I do not die.

Thinking that I needed more of a misadventure, while I was at daycare Mommy got a call at 5pm saying that I had a fever of 100.8 . She came to get me to take me home and to tube feed me some formula and watch a bit of Disney Jr! Daddy came home and gave me a hug, to find my entire person soaking. He investigated and the result... A leak in my plumbing!

We packed my bag and took off to the ER on a Friday night at 9:30pm! Oh this is going to be fun!  As die hard Ethan readers will remember, Fridays are not good days for me and hospital visits.  But what better way to spend your Friday night than with your family?  So daddy dropped mommy and me off at the door while he parked the Jeep.  We were whisked into the triage area where a young paramedic took to getting my vitals.  He was very nice but I think he was still learning the ropes.  It's ok triage man, we know how things work around here.  He hooked me up to the blood pressure machine and pressed the go button.  After a little over a minute, the machine displayed"C02", the man looked confused and asked out loud "what does C02 mean?"  Mommy looked at him and said "it means you have to press the button, he moved too much."  Next he wanted to take my O2 stats by placing the sensor on my finger.  Thank goodness mommy was there to interject and suggest my toe as I don't very much like my fingers being pinched.  Next it was time for my temp.  He grabbed the thermometer and looked me over deciding where he thought it might work the best and asked "will he take his temp in his mouth?"  Mommy stopped him once again and directed him to my armpit. Silly triage man, don't you know I have an oral aversion?  Finally I got to stand on the big boy scale fully dressed, with my shoes and everything, I weighed in at 22.8lbs.  Not sure how accurate those scales are for little people, but it made me feel good to use it.

A short 60 minutes later, we were seen by the on call ER doctor who took one look at my tube and said "we've seen these before but most of the time the parents bring in the parts and tell us what to do."  He probably was talking about a G tube with replaceable components while my PEG tube is all one piece and is not used in Waterloo.  The doctor called up to the pediatrics and ICU wards and asked them to bring down whatever tube pieces they had.  The nurses came shortly after carrying pieces for an adult size G tube however I am just a little squirt with a PEG tube and nothing was my size.  So after some more deliberation, they wrapped my tube in some tegaderm film and sent my parents home with a small metal clamp used on catheters.  We are not using this.... duh.  They suggested we call our pediatrician Monday morning.  The doctor, who also moonlights at the local mini mart, reminded us that the ER is open 24 hours.  All kidding aside, he was nice man.

"The Solution" in KW

Ethan's leak under the Tegaderm Film

We exited the ER and started walking to the Jeep.  I was nestled snugly in my Mommy's arms and had made it only a few steps out of the building when I puked all over Mommy.   Mine and Mommy's persons were now saturated by an entire bottle of vanilla flavoured off brand pediasure that daddy had been tubing me all night. A perfect end to a perfect day. 



In other news...

We got a call from Kidsability letting us know that I have been accepted into the "target words" program.  This program provides weekly parent training sessions starting in early April and runs for 10 weeks.  Of those 10 weeks, I only get to attend 2 weeks in which I am video taped while my parents try to get me to talk.  Otherwise it's all about Mommy and Daddy.  Let's hope they learn lots.

As for my talking progress so far, I'm up to 9 words.  My vocabulary consists of:  Hi, Bye, Mama, Crash, Go, Baby, Yum, Uh-Oh, and Choo Choo.  I'm not hooked on phonics yet and most of these words don't sound quite right but I can successfully convey my point.
Video below shows Ethan learning a new word: Baby

Ethan's new drinking water container

In addition to finding a few new words this month, Mommy also got me to drink out of a new water container that uses a straw.  It's way different than anything I'm used to but it sure does makes me feel like a big boy to use it.













I'm also gaining some new art skills which I think I have neglected to mention.  I not only have taken a liking to colouring with a range of markers but I now use a paint brush to splash some big dabs of paint on a page in my colouring nook.  Watch out Vangough, I have both my ears and a growing enthusiasm for impressionistic art.

Colouring

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!

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