Bye Bye Tube

My Pediatrician made an appointment for me to visit my tube insertion surgeon for my tube "removal" last Thursday. The McMaster clinic gave my mom a run down of the removal surgery procedure.
Apparently they do not put people under anymore to remove the tube. The high tech method is to cut the tube piece on the outside, and the inside piece just floats around in the tummy until it reaches the poop dispenser and visits the outside world! Mommy was concerned about this, so she mentioned that I was only 2.5 and small. They said it's okay that's what they do now. So with this information we headed down to our old McMaster stomping grounds to see my buddy Dr. Fitzgerald.

Upon arriving at the Child and Youth surgery clinic, Daddy opened the clinic door and I immediately knew I was in a place I did not want to be. I had to think of everything I could to get out of this! Mommy said we would only be here to see the Doctor and we would be done in only 5 minutes. I calmed down as mommy and daddy walked me to one of the clinic rooms where we were told that the doctor would be right with us.
As soon as we entered the room I tried to distract my mommy by asking to play Uno, if I got to play, nothing would happen to me! Mommy told me that we had to see the Doctor first, then we could play Uno. I was strangley okay with this.

Dr. Fitzgerald walked in and said "hmmm he's a little small for his age, do you mind if I try to just yank the tube out? That way he'll only feel a tugging for 5 seconds and then it will all be out?" Mommy and Daddy looked at eachother and said "Were were concerned as well that the inside piece may get stuck, so that's okay". I was introduced to Dr. Fizgerald as I was told to lay down on the bed. He seemed like a very nice man, plus he asked me what I had for Lunch... McDonalds chicken nugget and Fries!

I heard Mommy turn around and say "I can't watch", to which the doctor assistant asked Daddy "Are you okay to watch?" to which daddy immediately replied "Oh yes!".  With Daddy holding my hand we laid down and waited for the procedure to begin.  Dr. Fitzgerald held by tube up and snipped the end off with some scissors.  He then looked at me reassuringly and said "ok, this might hurt for just a second and it'll be over in a second."  He placed his hand gently on my tummy around my tube and took a firm grip of my tube and pulled.  Dr. Fitzgerald was right, it was over before I knew it.  After only a few seconds the end of the tube snapped off and it was over.  Dr. Fitzgerald wasn't surprised that the tube had broken as I was young and the skin in the area was still very tight.  The hole where the tube came out closed up immediately with no spills or splatters.

After I immediately started to whimper and called for my Mommy. Mommy came over and hugged me, then I was okay. Dr. Fitzgerald said that if he knew it was going to break he would have just cut it in the first place and that the inside tube piece was still inside so we had to look through my pooh diapers for the rogue piece.
Hmmm... we had no idea what that piece looks like and we feared that we would be scrounging around in poop for weeks! Dr. Fizgerald laughed and told his assistant to grab a new tube so we can see what we would be looking for, and assured us that we should see it in my poop by Monday. If not we could call him on Monday but even if the piece stayed in my tummy roaming around it would be okay there for a few months, as long as it didn't get stuck in my poop shute. (Well he didn't exactly use those words, but you get the idea!).

With that we left the Clinic. Mommy was right, we were in and out in 5 minutes! We stayed around for a bit in the waiting room though because they were playing a Chuggington episode on the TV. After the episode was finished we headed out to the car, where Mommy gave me a new toy car for being so brave "Francesco" from my favourite movie "Cars".

I am happy to report that I am totally tube free! I pooped out the inside piece Saturday Morning!

Happy Canada Day!

Hello!

We left off with a cliff hanger the last time we checked in with everyone!
So.... you'll be happy to know that when I visited my pediatrician I had gained some weight!
I weighed in at 23lbs 10oz and I am 34.5 inches high.

Mommy was happy to report that I am now asking to eat (however I haven't added anything new to my preferred list of foods in over 8 months).

My list of foods I eat:
Formula
Water
goldfish crackers
veggie stick chips
popcorn
crispy minis (cheddar flavour)
apple cinnamon cheerios
Reeses peanut butter puffs (cereal)
Heinz kids breakfast bars
mini go yogurt (strawberry, strawberry banana, strawberry vanilla, banana, and apple raspberry flavours)
Fries
Danino strawberry yogurt (from McDonaalds)
Oatmeal raisin cookies
cheddar cheese (medium and old)
Premium plus crackers
Whole wheat bread crust

So needless to say that when Dr. Rosner suggested making an appointment to have my tube removed Mommy just about fell off the hospital bed. Mommy said that the only thing that that concerned her was that if I stopped taking my formula for any reason I wouldn't be eating anything with the necessary vitamins that little ones need. Dr. Rosner said that we need to treat Ethan as normal as possible and that normal kids do not have peg tubes.  Mommy chose to punt and defer that discussion for another two months.  

Since then, I've had an appointment with my feeding ladies.  This time the report was good and I was eating.   It's funny though that I seem to bounce back and forth from eating to not eating every time they come to visit, I'm not one for consistency when it comes to eating.  Mommy asked them how they felt about the tube removal discussion and they said they're usually super excited when the suggestion comes up however in my case, I'm a very rigid little one when it comes to eating so they agreed I needed time.  They added that usually even if the decision to remove the tube is a go, it often takes some time to actually book the surgery.  The plan was to continue sensory play and pursue more exposures to foods.  Same ol' stuffs.

Speaking of sensory play, I have just finished a four week block of sensory therapy at Kidsability.  I was going once a week for 30 minute sessions with Lori.  My goals were to stop making disgusted faces when exposed to wet sand, cotton balls, paint, and cooked macaroni.   And how did we do you ask?  Well, we're not the best, but obviously we're not the worst, this is why we're being discharged! Make room for the more disgusted face makers!  The reality is that we've hit a wall in the therapies we can do there as I seem to know be ok with textures when we're dealing with toys but when it comes to food, I know its food and the shields come up and I run screaming to another room.  Sadly, Kidsability doesn't provide any therapies that focus on food.

As you know, I have been on a waiting list at Kidsability for a speech assessment since I was 12 months old. My assessment came last October and the suggested path was to start a program called Target Words aimed at training my parents in how to teach me words.  This was to start this past April.  As you may recall, this program was cancelled the very day it was to begin.  During my daycare meeting, Mommy brought up the cancellation to Lori and she forwarded the update to the speech assessment lady who made another appointment.  This past Friday was the next assessment where after some quick checks on my progress we were given to possible paths and we could choose only one.  The first was another group program in which I would participate with my parents and other children my age and older.  The program would focus on play based activities to promote specific words.  Regrettably, I'm not much for group activities and I seem to be intimidated by other kids' skills.  This option would begin some time in the fall or winter.  Option two would be to join another waiting list for an individual speech language pathologist at Kidsability.  The time frame for this avenue is typically eight months.  We've yet to make a decision; we have until Tuesday.

In other news, Mommy enrolled me in Adults and Tots swim class.  We go Monday and Wednesday nights for 30 minutes.   The first day went better than anticipated especially since I have not had any time in the pool since I was only 10 months old.  The second day however was not so good.  I didn't really feel like doing anything I was told.  I was the only one who abstained from using my life jacket.  I should note that I'm the oldest in my class and the other kids haven't developed that independent thought thing yet, nor have they mastered the use of the word "no".  Also, the man who conducted the second class wasn't very organized and didn't come ready with a plan.  He pretty much said welcome to class, please feel free to jump on the desks.

Finally, Mommy has been trying to get me to where a different hat.  Not that my straw fedora isn't awesome, but I need to get used to different hats.  She has now saddled by brow with a sweet new jeep hat that I where with pride.  Check out the pic!

Happy Canada Day!

An update on Ethan

Hello All, Ethan Here!

We've got lots to talk about so here's what's been going down in Ethan town!

A few weeks ago we met with my entire case team along with a few of my teachers at the daycare.  It was the single largest gathering of people in one room working together for my benefit since back in my hospital days.   The meeting consisted of the following usual suspects:

Lori (my OT from kidsability)
Laurie & Cheryl (my feeding team from CCAC)
Tracy (my resource teacher)
Jenn (my toddler teacher)
Marcia (the school EA)
Mommy & Daddy (my parents)

If you've been keeping track, Catherine, my PT was unavailable to join us as she was rocking a vacation...

The meeting was an opportunity to get everyone together and on the same page regarding my progress, my goals, and unify a plan for the future!  From the meeting everyone learned a lot about what I am capable of.  Mommy and Daddy learned that I have eaten some additional foods at daycare including carrot cake, banana bread and a chicken burger which I will not eat at home and have not eaten again since the meeting.... argh.  The daycare ladies learned that I have many spoken words which I will only use at home.  I also use many signs which they didn't realize were attempts at communication.  Overall everyone's eyes were opened and it was a very successful meeting.

Here's a nearly complete list of my spoken words (bear in mind that I don't really say them perfectly but the point comes across anyway):

Hi                         Pee                     No                   Buh (Bus)             Woo (Two)
Bye                       Up                      Ya                   Eee  (Jeep)            Eee (Three)
Mama                   Down                 No Way           Ow (Meow)         Aht (Hot)
Dada                     Ease (Please)     Go                   Dash (Crash)        Waow Waow (fire truck)
Papa (Grandpa)    Eeze (Cheese)    Mine               Bee Bee (Beep)    Ha (Half)
Ba (Grandma)      Oh Boy               Dat (Cat)       Wuh (One)           Eat

Here's a nearly complete list of my signs:

Hi                       All done              Friend               Music                  Shoes            Ten Minutes
Bye                     Finished              Hurt                  Train                   Shut              
Up                      Play                     Cold/Scared     Help                     Book
Down                 Bird                     Music               One                      Monkey
Mine                  Drive Car             Eat                   Two                     Dog
More                  Sippy                   Water               Sleep                   Thank You

Occasionally I have manged to string two of these words/signs together but no major sentences or complete thoughts.

In other news from daycare I have now sat on the communal potty twice and even peed in it once! booyeah, baby steps towards potty training.  My mom and dad even rewarded me with a sweet Lightning Mcqueen potty for my bathroom.  I'm happy to sit on the potty with a good book but by no means am I ready to pee by myself on a regular basis.  I'm still content to enjoy the warm feel a full diaper.

My Ipad skills are continuing to develop.  I now play Angry Birds, and furiously demand to do so regularly.  Also, I have been dabbling in an app called Endless Alphabet.  The app consist of many words whose letters are scrambled up and the goal is to reassemble the word by matching the scrambled letters to a sample of the word.   Have a look at the video below to see what I mean.

Next we're off to the Zoo!  Last weekend we took Papa and Wayne to the Toronto Zoo.  It was a nice day filled with animals I could have cared less about.  All I really wanted to see were the elephants and the giraffes.  The elephants apparently weren't available for me to see due to "maintenance" but the giraffes, oh the giraffes! I loved them!!!! I even got some cool pics with my long necked spotted friends.  After the giraffes, I was pretty much spent, so we went to the gift shop to commemorate my first zoo trip. I ended up scoring a sweet $20 stuffed elephant, yay for zoo inflation! My Grandpa got me a train with various wood animals who sit in the freight cars attached to the train. Awesome! Then it was onwards towards home.

Speaking of animals this past weekend I went to the farmers market with mommy, daddy and grandpa. I must have been a good little boy because my parents rewarded me with my first pony ride! I was VERY hesitant to get on this pony, that was being called Dynamite! However mommy calmed me down and we were off! OMG I loved it! I was smiling from ear to ear and I didn't want it to end. But alas all good things must come to an end and I thanked my pony, Dynamite and continued on my way until NEXT TIME!

At home I love to go on my nightly "dog walks" no folks, our family did not get a dog, I just love to walk around my neighbourhood to find other people walking their dogs. I am very lucky since we have a neighbourhood pet store and the owner keeps his 2 biiiiiiig dogs at the store. I'm talking like horse sized dogs! AND I know just how to get there on my own!

Since I would be running away on my own to find dogs, my parents bought me my own get away "neat and tidy cottage" that I can play in with my cars and animals. So far I love going in and out of the cottage and calling grandpa from the play phone!

Now off the fun stuff an on to my therapy and home work....
As you may know, my speech therapy program "Target words" was cancelled before it even started, so I was stuck in limbo for a few months. During our meeting at the daycare, Lori was informed about what happened and she went to talk to someone so that I could at least get assessed again by their therapist. That day mommy was called to book a speech appointment for me. Then the day before my appointment it was cancelled because the therapist had emergency surgery. I am sad that she had surgery, however this sucks! My appointment has been rescheduled yet again this time for the end of June. Cross your fingers folks that my appointment goes as planned!

I saw Lori again to schedule me in for another block of therapy, I have been signed up for once a week for 4 weeks. In these sessions, Lori will be trying to get me to play with different textures (wet sand, glued cotton balls, paint and lastly soy butter, peas and cooked macaroni. As you can image the last few items are not going too well. The first few items are only going slightly better. Lots of homework for me.

Lastly I met up with Catherine, my physiotherapist after being off block since the beginning of January. She was happy to see that I am walking! We did a few exercises and will meet up again Mid-August where the decision will be made if I need these things called "SMO". SMO is a type of orthotic (Supra-Malleolar Orthosis).The SMO is designed to maintain a vertical, or neutral heel while also supporting the three arches of the foot.  She says my foot position isn't too bad, but I have been walking for 6 months so I shouldn't have this issue anymore, yet it remains, she says that I wouldn't have to wear them all the time, so half with them, half the time not. So I have 2 months to whip my supra-malleolar into shape!

I will be visiting my Pediatrician tomorrow for my first weigh in in 2 months, please think fat thoughts for me!

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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New Year's resolutions

Oh Wow! Where do I start! (As an aside I totally forgot my login password! An indication that it has been too long without an update).
 
Physiotherapy:

 I started up again at Kidsability for Physio. This time around I received a therapist from the Waterloo location, Catharine. She has been working on getting me to bearcrawl up a ramp and to squat, and also to get me to move my feet in a forward propelling action without holding onto anything. I started walking a few steps out from the wall to the waiting arms of Mommy or Daddy.
Now I can basically cross a room, however I need to be enticed by a reward and also be able to end in Mommy or Daddy's arms still.
My Goals: Bearcrawl up the ramp, squat, stand on my own and walk on my own.

Texture Therapy:
I have attended 3 sessions at Blue Balloon, since we last spoke. My homework has been body compressions and face petting towards my mouth to break through my defenses. So far we have been lax on this homework... My Mommy has sent me to Kidsability with Lori (my OT) to focus on playing with different textures. Lori has introduced me to hand painting (which I do not like, but I love squeezing the bottle of paint onto the paper!). Watching her play with Jello and getting her to put pieces of Jello in dolls eyes! I have also put my farm animals in Jello, and like to clean them off with a damp cloth when they get " Jello dirty"! My favourite game to play with Lori is trying to find the "bugs" in dry lentils!
My Goals: to trust enough textures to start getting my hands in them without feeling distressed.

Speech:
I currently have no words. However, I make sure that my point gets across in other ways!
I finally had my speech assessment at Kidsability where it was noted that my receptive language far surpasses any of my expressive skills. I have been placed on a wait list for this program called "Target Words". This is a once a week for 6 weeks program where my parents get trained in techniques to train me.
My Goals: To speak

Feeding:
Over the past 2 months the goal for me has been to put on weight. This was achieved by starting to tube me again up to 24 oz (of my adjusted formula) each day. Since this means I didn't get to control my feeds, I dropped off my oral feeding. I was down to taking less than 10 oz of formula a day and eating 1-2 pieces of dry crunchy snacks. My parents again had the discussion of trying to wean me. Mommy was successful in convincing Daddy to go along with this plan... So....
Fast forward to this week:
I have accepted all my sippy's (mixed with TV and without TV), amounting to 18-24 oz a day of formula (orally!). I have started to enjoy eating mini-go (yogurt) again, however this is best served on the kitchen floor where I can control my anxiety (by going directly to it, or backing away from it).
I have been tube free for 8 days! (the tube is still attached, and is being used strictly for water).
My Goal: PEGasaurus removaurus

Medical Updates:
We visited Dr. Tarnopolsky at McMaster for my followup. He said I am doing really well and that I can see him once a year now!

My parents took me to my dietician (Lynn) to have me placed on my digital throne of judgement. Breath was held!..... 22 lbs! (and if we use the old American growth chart I am at the 15th percentile!) However, if we use the new one that was adjusted for all the fat kids I am at the 5th percentile! (Lynn is using the old one! Yay me!).
She even said that my parents can cut back on the caloric intake for me, as I did well with my weight gain over the past couple months.
My Goal: To not lose weight

School:
Daycare is going well. The ladies always comment on how happy I am during the day. I continue to eat my dry crunchy foods (and even added graham crackers and oatmeal raisin cookies there). We learned recently that my sippy cup went AWOL and was replaced by an imposter! This will be rectified effective tomorrow in hopes that I start accepting my sippys at school again.
My Goal: Accept my sippy at daycare

Odds and Ends:

1) Christmas: I met Santa for the second time in my life, and I am still not scared of him. He did bring me a Mickey Mouse Clubhouse afterall!
2) I love playing the Piano at Grandma and Grandpa's! I am actually quite good at finger placement, I may start saving up for lessons!
3) I hate pants. None of them fit me... all these fat kids never think about the small kids! I either have pants that stay up but barely clear my knees, or pants that fall to my ankles but the length is fine. ARG!
My Goal: Create the Ethan Reimer "Average height and small waist" clothing line. (Working on the logo)

Administration
And what report would this be without a section about administration....
Dave (my infant development rep) was discharged when I turned the ripe old age of 18months. He has been replaced by a SNAP referral at my school who looks at me every once in a while and writes in her binder.

P.S. I was Spiderman for Halloween!