tag:blogger.com,1999:blog-80314664923480131572024-02-19T00:13:00.871-08:00Little E - Mito WarriorFollow Ethan, the miraculous 2 year old on his journey to defeat his Mitochondrial DisorderEthanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.comBlogger105125tag:blogger.com,1999:blog-8031466492348013157.post-85393644386785014192013-11-17T12:15:00.001-08:002013-11-17T12:15:09.819-08:00Bye Bye TubeMy 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.<br />
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.<br />
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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.<br />
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.<br />
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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!<br />
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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.<br />
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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. <br />
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!).<br />
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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".<br />
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I am happy to report that I am totally tube free! I pooped out the inside piece Saturday Morning! <br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-53271801548384124972013-07-01T11:34:00.001-07:002013-07-01T11:34:07.468-07:00Happy Canada Day!Hello! <br />
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We left off with a cliff hanger the last time we checked in with everyone!<br />
So.... you'll be happy to know that when I visited my pediatrician I had gained some weight!<br />
I weighed in at 23lbs 10oz and I am 34.5 inches high.<br />
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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).<br />
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My list of foods I eat:<br />
Formula<br />
Water<br />
goldfish crackers<br />
veggie stick chips<br />
popcorn<br />
crispy minis (cheddar flavour)<br />
apple cinnamon cheerios<br />
Reeses peanut butter puffs (cereal)<br />
Heinz kids breakfast bars<br />
mini go yogurt (strawberry, strawberry banana, strawberry vanilla, banana, and apple raspberry flavours)<br />
Fries<br />
Danino strawberry yogurt (from McDonaalds)<br />
Oatmeal raisin cookies<br />
cheddar cheese (medium and old)<br />
Premium plus crackers<br />
Whole wheat bread crust<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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!<br />
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Happy Canada Day!<br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-72011590338202847552013-06-16T10:43:00.000-07:002013-06-16T10:43:00.586-07:00An update on EthanHello All, Ethan Here!<br />
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We've got lots to talk about so here's what's been going down in Ethan town!<br />
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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:<br />
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Lori (my OT from kidsability)<br />
Laurie & Cheryl (my feeding team from CCAC)<br />
Tracy (my resource teacher)<br />
Jenn (my toddler teacher)<br />
Marcia (the school EA)<br />
Mommy & Daddy (my parents)<br />
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If you've been keeping track, Catherine, my PT was unavailable to join us as she was rocking a vacation...<br />
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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.<br />
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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):<br />
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Hi Pee No Buh (Bus) Woo (Two)<br />
Bye Up Ya Eee (Jeep) Eee (Three)<br />
Mama Down No Way Ow (Meow) Aht (Hot)<br />
Dada Ease (Please) Go Dash (Crash) Waow Waow (fire truck)<br />
Papa (Grandpa) Eeze (Cheese) Mine Bee Bee (Beep) Ha (Half)<br />
Ba (Grandma) Oh Boy Dat (Cat) Wuh (One) Eat<br />
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Here's a nearly complete list of my signs: <br />
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Hi All done Friend Music Shoes Ten Minutes<br />
Bye Finished Hurt Train Shut <br />
Up Play Cold/Scared Help Book<br />
Down Bird Music One Monkey<br />
Mine Drive Car Eat Two Dog<br />
More Sippy Water Sleep Thank You<br />
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Occasionally I have manged to string two of these words/signs together but no major sentences or complete thoughts.<br />
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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.<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_kVrs6WHzIjBH0boPeq56De6ZC_5nizkyAGPgMVqQXs77EuOawoo4413f0DzeKtSNBepCbRbtry3trKTVTM3m5BYs0iL4jYWjd8S1jx-q9tBjWEaIhJ27mV0S6hCXOv0jSQYGDRkaOik/s1600/photo.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_kVrs6WHzIjBH0boPeq56De6ZC_5nizkyAGPgMVqQXs77EuOawoo4413f0DzeKtSNBepCbRbtry3trKTVTM3m5BYs0iL4jYWjd8S1jx-q9tBjWEaIhJ27mV0S6hCXOv0jSQYGDRkaOik/s400/photo.JPG" width="300" /></a>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.<br />
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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! <br />
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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!<br />
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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!<br />
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Now off the fun stuff an on to my therapy and home work....<br />
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!<br />
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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.<br />
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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!<br />
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I will be visiting my Pediatrician tomorrow for my first weigh in in 2 months, please think fat thoughts for me!Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-40707450354796311432013-05-19T08:05:00.001-07:002013-05-19T08:05:18.746-07:00Look what I can do!Hi All, Ethan here!<br />
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When last we spoke I had just enjoyed my second birthday and<br />
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a successful weigh in showing some moderate but definitely positive gains.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVhpSTrnx9KTO1cyFUq5op-pKBIf9xTKsyEnuSFQylbjbFDEDf02EyIYfB65ifSMJuYBOtxhxU_dL9R1Uny_uiOqDl9dqL_crqboWaMuudH54E38GrHhOvJbuJ8h9j6FGYbg9nYoAbhEA/s1600/IMG_0657.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVhpSTrnx9KTO1cyFUq5op-pKBIf9xTKsyEnuSFQylbjbFDEDf02EyIYfB65ifSMJuYBOtxhxU_dL9R1Uny_uiOqDl9dqL_crqboWaMuudH54E38GrHhOvJbuJ8h9j6FGYbg9nYoAbhEA/s320/IMG_0657.JPG" width="320" /></a>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!<br />
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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!<br />
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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!<br />
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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! <br />
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Make sure to tell all your friends how strong I am!!!<br />
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Until next time, dance a little dance and just have fun :)<br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-74518439356160763632013-04-24T20:01:00.000-07:002013-04-25T05:51:24.617-07:00Happy Birthday to Me!Hello All, Ethan here!<br />
<br />
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!<br />
<br />
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.<br />
<br />
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....<br />
22lb 14 oz. I had gained 100g since March. Hmmm not sure how that fairs yet....<br />
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.<br />
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<br />
<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-75839530789562748022013-03-29T07:54:00.002-07:002013-03-29T07:54:39.706-07:00A Field Trip to McMaster ERAfter 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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...<br />
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.<br />
<br />
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.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgah0Dh9dy1VJYw-NpvXi9bjAoKki4I30A4oRApW2-x3zzb6kKnjhMC7-wrFq-tMb5hZhy5qD2VsrkTgdkQnHdE7ywsUvGbTN1kuJGEbi_NYu6RvJ9HnMiwo6xak-DwFcn_XClsGL4rtzY/s1600/Hamilton+2-20130326-01536.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgah0Dh9dy1VJYw-NpvXi9bjAoKki4I30A4oRApW2-x3zzb6kKnjhMC7-wrFq-tMb5hZhy5qD2VsrkTgdkQnHdE7ywsUvGbTN1kuJGEbi_NYu6RvJ9HnMiwo6xak-DwFcn_XClsGL4rtzY/s400/Hamilton+2-20130326-01536.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watching the Incredibles</td></tr>
</tbody></table>
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.<br />
<br />
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!<br />
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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.<br />
<br />
Oye, some adventure, at least it ended with me NOT in the Operating Room.Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-57593061996918712612013-03-24T13:43:00.001-07:002013-03-24T13:43:12.029-07:00The Misadventures of Ethan ReimerWhat would an adventure be like without the misadventures.....<br />
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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!<br />
<br />
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.<br />
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.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIUc4LITUv1krP5CPbAcZ7X4I2XO-N3yEd8FNiIxAUWbWNSxH6zItEoEetGHpNNqPj5LuYuAcSUAi9NGuFy3ViiL9WJ41h7FiiHg6WaNuc2-8kkRzdneptrmHJAhAXVnlJeEgOZIu19Z4/s1600/2013-03-18+09.48.58.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIUc4LITUv1krP5CPbAcZ7X4I2XO-N3yEd8FNiIxAUWbWNSxH6zItEoEetGHpNNqPj5LuYuAcSUAi9NGuFy3ViiL9WJ41h7FiiHg6WaNuc2-8kkRzdneptrmHJAhAXVnlJeEgOZIu19Z4/s400/2013-03-18+09.48.58.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ethan and his appointment card. You can also see the "algae colour" in the background</td></tr>
</tbody></table>
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.<br />
<br />
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.<br />
<br />
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.<br />
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Since everyone was getting too comfortable with my gains, I of course had to shake things up.<br />
We enter the misadventures of Ethan Reimer....<br />
<br />
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.<br />
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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!<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhMIkT0VndXYrO1XfFUS01NPJjNnU0Uy3le4RIbJ4mgkXXpxYMOa_TSctmgfSjL8qoZBwaVIj8ZpnLhkC0_P5Rdk50Sb5wSqaR2OJbzcw5GsfSB-Pfdy_TnVyZppHXmqHW9_OOZ9UO7U/s1600/Kitchener-20130322-01531.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhMIkT0VndXYrO1XfFUS01NPJjNnU0Uy3le4RIbJ4mgkXXpxYMOa_TSctmgfSjL8qoZBwaVIj8ZpnLhkC0_P5Rdk50Sb5wSqaR2OJbzcw5GsfSB-Pfdy_TnVyZppHXmqHW9_OOZ9UO7U/s320/Kitchener-20130322-01531.jpg" width="320" /></a></div>
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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhimjUte03II8AMXMaCwgZ3ZGysLHT50amWGqjb4JQdBt675EdkdvqExrkPAzuC0SWAJd7TtCgEorFT2SuTO3qbgfTxoi5SosEB16phDSYlQXH-qOh_MbWaKppqqA0RsmWATnnvkzkIknA/s1600/Kitchener-20130322-01532.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhimjUte03II8AMXMaCwgZ3ZGysLHT50amWGqjb4JQdBt675EdkdvqExrkPAzuC0SWAJd7TtCgEorFT2SuTO3qbgfTxoi5SosEB16phDSYlQXH-qOh_MbWaKppqqA0RsmWATnnvkzkIknA/s200/Kitchener-20130322-01532.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"The Solution" in KW</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDCskGIWBS_nDnBH9a59WA48UObYyTLtoiq8ScVpNj7lsY6uhKdPp4iumryEdStv8boRr1pZQXqym1flDEuyvHTRw-zRLPair1sadP5oHVnG938TImtbyJZtXS68qy9r1eOzf29PI4c6I/s1600/Kitchener-20130323-01533.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDCskGIWBS_nDnBH9a59WA48UObYyTLtoiq8ScVpNj7lsY6uhKdPp4iumryEdStv8boRr1pZQXqym1flDEuyvHTRw-zRLPair1sadP5oHVnG938TImtbyJZtXS68qy9r1eOzf29PI4c6I/s200/Kitchener-20130323-01533.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ethan's leak under the Tegaderm Film</td></tr>
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<br />
<br />
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. <br />
<br />
<br />
<br />
In other news...<br />
<br />
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.<br />
<br />
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.<br />
<span style="color: red;">Video below shows Ethan learning a new word: Baby</span> <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpgY9wXOzJvfoZvc7wbVD59KdFLFj4cz18hVs2ttg2dqoiJ1SEGrq8-tG_EJ-LoxABaY-m8OXF7iHyPS84zMKk9xxqsNYeyHO6e75tzy4I9-8Kcqp7RlkJmFOUtyOLJSwVvvB5zfPMg0s/s1600/2013-03-14+18.58.10.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpgY9wXOzJvfoZvc7wbVD59KdFLFj4cz18hVs2ttg2dqoiJ1SEGrq8-tG_EJ-LoxABaY-m8OXF7iHyPS84zMKk9xxqsNYeyHO6e75tzy4I9-8Kcqp7RlkJmFOUtyOLJSwVvvB5zfPMg0s/s320/2013-03-14+18.58.10.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ethan's new drinking water container</td></tr>
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<br />
<br />
<br />
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.<br />
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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.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4NWVDp7DzIVPzEl71-nHLR5Kw3Lpm_i78Coz_uuYaPr5n3qgZR77YbiMHC5q_qi1mqWv_XeOM_tPKf_CM6pvAu9PwyvrUxb_TDlmRebCCgi1oagLFpnxJ9dLeyxKSH984oWonEyczPUg/s1600/2013-03-11+19.55.30.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4NWVDp7DzIVPzEl71-nHLR5Kw3Lpm_i78Coz_uuYaPr5n3qgZR77YbiMHC5q_qi1mqWv_XeOM_tPKf_CM6pvAu9PwyvrUxb_TDlmRebCCgi1oagLFpnxJ9dLeyxKSH984oWonEyczPUg/s320/2013-03-11+19.55.30.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Colouring</td></tr>
</tbody></table>
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-76787225024435010222013-02-28T13:59:00.000-08:002013-02-28T13:59:19.203-08:00What goes up must come down<br />
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...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2yHBVDH0AKuOxuFCgG9E2C_5uTyD9HzGdD-J4YfLkqQSjsZokRX5ntQ3cs1lVQZ5VzPyQIDLtr0tu6woZUP5Q6bvXT8M7_TiuP5tuuKlwgOBScOWa3lfFFaNBKRXB0r5lVJZod-UHvNo/s1600/photo(2).jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2yHBVDH0AKuOxuFCgG9E2C_5uTyD9HzGdD-J4YfLkqQSjsZokRX5ntQ3cs1lVQZ5VzPyQIDLtr0tu6woZUP5Q6bvXT8M7_TiuP5tuuKlwgOBScOWa3lfFFaNBKRXB0r5lVJZod-UHvNo/s400/photo(2).jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ethan Eating Yogurt with Grandpa at the beginning of the Operation</td></tr>
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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.<br />
<br />
Flash Forward to a week and a half ago... The downward spiral begins.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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).<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMXCxu0_zPPZ2g0YKzCmZ91CnpkhCZdjKr_Zl3xbmKZw6aVvZNZeB8soq-h0s38sEHQv8gugc9m9ICIRNO20dZ42qvjp-eD5ZnOnwSjmtfsr545i3tbKTEVahZe7eO3os763eHhZNBj1k/s1600/photo(5).jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMXCxu0_zPPZ2g0YKzCmZ91CnpkhCZdjKr_Zl3xbmKZw6aVvZNZeB8soq-h0s38sEHQv8gugc9m9ICIRNO20dZ42qvjp-eD5ZnOnwSjmtfsr545i3tbKTEVahZe7eO3os763eHhZNBj1k/s400/photo(5).jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ethan enjoying a fake picnic</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
So the new medical plan: <br />
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. <br />
<br />
<br />
<br />
<br />
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<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxdXeED_MHLx_X6RLoETPmhORmTNcfdPjUGxc5NhaSXWh6OyqSTUvaiOc5MwNOI8Hl4RLtATa9P68kSPeU_wTQLeAz9NHydZ5ui6yTHgZhr4mdDWUph0V-pS5A_1YZYpDfCfGbDI1DHMA/s1600/facebook-profile.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxdXeED_MHLx_X6RLoETPmhORmTNcfdPjUGxc5NhaSXWh6OyqSTUvaiOc5MwNOI8Hl4RLtATa9P68kSPeU_wTQLeAz9NHydZ5ui6yTHgZhr4mdDWUph0V-pS5A_1YZYpDfCfGbDI1DHMA/s1600/facebook-profile.jpg" /></a>Lastly, please recognize that today is Rare Disease day!<br />
<div style="left: -1988px; position: absolute; top: -1999px;">
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</div>
A rare disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-74812063782421508342013-02-09T13:17:00.001-08:002013-02-09T13:19:51.601-08:00Operation Starvation-Dehydration is a go!Hi All,<br />
<br />
Well it's been a little over a month since I last brought you all up to speed so here goes.<br />
<br />
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>><br />
<br />
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:<br />
<br />
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. <br />
<br />
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!<br />
<br />
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!<br />
<br />
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!<br />
<br />
In other news, let me take a minute to update you on our goals from last time:<br />
<br />
Physiotherapy:<br />
<br />
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.<br />
<br />
Texture Therapy:<br />
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.<br />
<br />
Speech:<br />
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.<br />
<br />
Feeding:<br />
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. <br />
<br />
School:<br />
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.<br />
<br />
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.<br />
<br />
All the best my friends, we'll talk again soon!<br />
<br />
-Ethan<br />
<br />
P.S. I ate a piece of popcorn with buffalo wing seasoning on it and didn't spit it out, how cool is that!<br />
<br />
<br />
<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-7890376270460257402013-01-03T19:32:00.001-08:002013-01-03T19:32:31.635-08:00Powered by McNuggets and French Fries<div class="separator" style="clear: both; text-align: center;">
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-22367467748097355682013-01-01T19:11:00.001-08:002013-01-01T19:12:45.852-08:00New Year's resolutionsOh 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).<br />
<br />
<span style="background-color: magenta;"><b><span style="background-color: magenta;"><span style="font-size: large;"><i><span style="color: purple;"><span style="background-color: white;">Physiotherapy:</span></span></i></span></span><span style="background-color: white;"></span></b></span><br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb6QT_5zGgtu5IQkpuEBT7CTclQZ9wD1L2LaxtqU4HNfY98aflGsvwHeM9TrGzpBIsG5FJZYVfCqrNQGL57GTwICSqJq8zbryxjy4oWyEcyHWN3v4GD_SBOL-ORVaIwJ0BUY8b9w78QPY/s1600/IMG_0522.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb6QT_5zGgtu5IQkpuEBT7CTclQZ9wD1L2LaxtqU4HNfY98aflGsvwHeM9TrGzpBIsG5FJZYVfCqrNQGL57GTwICSqJq8zbryxjy4oWyEcyHWN3v4GD_SBOL-ORVaIwJ0BUY8b9w78QPY/s400/IMG_0522.JPG" width="400" /></a></div>
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.<br />
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.<br />
<span style="color: blue;">My Goals: Bearcrawl up the ramp, squat, stand on my own and walk on my own.</span><br />
<br />
<span style="font-size: large;"><i><span style="color: purple;"><span style="background-color: white;"><b>Texture Therapy:</b></span></span></i></span><br />
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!<br />
<span style="color: blue;">My Goals: to trust enough textures to start getting my hands in them without feeling distressed. </span><br />
<br />
<span style="font-size: large;"><i><b><span style="color: purple;">Speech:</span></b></i></span><br />
I currently have no words. However, I make sure that my point gets across in other ways!<br />
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.<br />
<span style="color: blue;">My Goals: To speak </span><br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDoYEd39CxEoK2DNU5j5NI2R8r0c8kjHi69azIjhO7DWP8uhXV899e3-bT6ACKBcni2My1NjVnYBGdi-1jj-Q-_GDP20F5vVWW89h92ggQJy6m_sh3cgiK49sJsryVGYjUeJGmwOSAM68/s1600/Kitchener-20121218-01347.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDoYEd39CxEoK2DNU5j5NI2R8r0c8kjHi69azIjhO7DWP8uhXV899e3-bT6ACKBcni2My1NjVnYBGdi-1jj-Q-_GDP20F5vVWW89h92ggQJy6m_sh3cgiK49sJsryVGYjUeJGmwOSAM68/s400/Kitchener-20121218-01347.jpg" width="300" /></a><b><i><span style="color: purple;"><span style="font-size: large;">Feeding:</span></span></i></b><br />
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....<br />
Fast forward to this week:<br />
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).<br />
I have been tube free for 8 days! (the tube is still attached, and is being used strictly for water).<br />
<span style="color: blue;">My Goal: PEGasaurus removaurus</span><br />
<br />
<span style="font-size: large;"><span style="color: purple;"><i><b>Medical Updates:</b></i></span></span><br />
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! <br />
<br />
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!).<br />
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.<br />
<span style="color: blue;">My Goal: To not lose weight </span><br />
<br />
<span style="font-size: large;"><i><b><span style="color: purple;"><span style="font-size: large;">School:</span></span></b></i></span><br />
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. <br />
<span style="color: blue;">My Goal: Accept my sippy at daycare</span><br />
<br />
<span style="font-size: large;"><span style="color: purple;"><i><b>Odds and Ends:</b></i></span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvrVKO-f9TH-X_rxKXrBrrHw5WTGG6iDu1bijYjwLuBUaOlp9a839izwzutfecrPcpZuZftoV0PrY7CGxOnKza66szwdvUOUt6cVXirxjF6-MWXytS59CV3zfMy5JxLJvLkG6_miA2Ues/s1600/1356136642.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvrVKO-f9TH-X_rxKXrBrrHw5WTGG6iDu1bijYjwLuBUaOlp9a839izwzutfecrPcpZuZftoV0PrY7CGxOnKza66szwdvUOUt6cVXirxjF6-MWXytS59CV3zfMy5JxLJvLkG6_miA2Ues/s400/1356136642.jpg" width="400" /></a><br />
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!<br />
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!<br />
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!<br />
<span style="color: blue;">My Goal: Create the Ethan Reimer "Average height and small waist" clothing line. (Working on the logo)</span><br />
<br />
<span style="font-size: large;"><i><b><span style="color: purple;">Administration</span></b></i></span><br />
And what report would this be without a section about administration....<br />
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.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZQR-IkYei7g_vZOnCl4qDSKtICu0bGF1DJyje3CPN-SiF0Rj74PTm407Jcnz3lccOZbDCi6cJ-co1lnVCDtcbCahCbWs-kAVTb8K2gKM_4EOX2hC3fPyhnWkDqW-wojprcR6-vOez75Q/s1600/IMG_0158.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZQR-IkYei7g_vZOnCl4qDSKtICu0bGF1DJyje3CPN-SiF0Rj74PTm407Jcnz3lccOZbDCi6cJ-co1lnVCDtcbCahCbWs-kAVTb8K2gKM_4EOX2hC3fPyhnWkDqW-wojprcR6-vOez75Q/s400/IMG_0158.JPG" width="300" /></a>P.S. I was Spiderman for Halloween! Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com1tag:blogger.com,1999:blog-8031466492348013157.post-2944144748715100892012-10-02T11:38:00.002-07:002021-05-17T06:30:09.373-07:00Unscheduled hiatusI want to apologize for taking an unscheduled hiatus. A lot has happened to me since we last spoke.<br />
This is going to be a long winded post.<br />
<br />
As we last left off, Blue Balloon was insisting that I be scheduled for a swallow study to make sure that it was safe for me to swallow. Something that my parents, my feeding team, my pediatrician and my dietician has already deemed I was clinically able to do. The therapists there have finally agreed to take me into their therapy based on clinical clearance by my community feeding team (Lori and Cheryl). What is the next proposed step for my therapy? Apparently to get into their OPT program I need to be assessed by a person in Burlington who will view me for 2 hours and make recommendations and a plan for me to be carried out by the therapist in Waterloo. Apparently the person in Waterloo is only a Level 2 and does not have the experience yet for clinical assessments. We need to go to this Level 3 person at the Blue Balloon in Burlington. The best part is that this assessment is $625. My parents slightly miffed by the experience we've had so far called to get a refund on the second session we had and ultimately pass on this OPT assessment as we are questioning if I would benefit more from OPT or some other therapy. Instead we have been given a free session with Kora for sensory play and we have been told that Kora is also familiar with their OPT program and can make a recommendation if she feels that I would benefit from that type of therapy. As it is essentially a "free session" we agreed and made arrangements to come in again. As it stands we really don't know if we want to continue therapy with them after this session, however it is very unfortunate that they are the only company in town that offers some type of feeding therapy.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdm8M_3ZEotM7E-CYI2Kh9fcLS7jJnpZLGe2OpAW5vi-VUf_Pc-usW8EBk2iD8cL8D7nd7-pbqy4dIAlZKgdiT3VUHa1FMMC6sVqtRXtCow5UbBuVda7zp1MD4GWKikxPfGB2Eu9clLcA/s1600/IMG-20120921-01234.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdm8M_3ZEotM7E-CYI2Kh9fcLS7jJnpZLGe2OpAW5vi-VUf_Pc-usW8EBk2iD8cL8D7nd7-pbqy4dIAlZKgdiT3VUHa1FMMC6sVqtRXtCow5UbBuVda7zp1MD4GWKikxPfGB2Eu9clLcA/s400/IMG-20120921-01234.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The first day of my laxative I did not feel like doing anything!</td></tr>
</tbody></table>
<br />
As we move on to the following week. I had still been eating less orally, but then I started to vomit whenever food would reach my tummy, liquid or solid. Mommy called my Pediatrician and I was seen that day. She said my tummy felt okay but she was almost certain that I was constipated as all the other variables seemed to point there. I was taken for an X-ray where I was deemed to have "quite a lot of poop in there". I was prescribed PEG 3350 (which is a powdered laxative) to take the max amount for 3 days then I could take less until I had a solid type poop. Well for 3 days I couldn't keep any substantial calories down because there was no room for the food to move down to become digested. So Mommy pumped me full of water and apple juice and the occasional pedialyte so I was greatly hydrated and my sugars wouldn't drop. I managed to hold down about 8 oz of formula a day but that was it. I felt incredibly full and so gross as we waited for my poo to be released from my body.<br />
<br /><br />By the 3rd day I had started to poo brown water, Mommy swore she changed about 17 diapers that day all full of this murky brown goop. The need for a steam cleaner has now been moved up our Christmas list. With my puking on her and pooping flowing out of my diapers. However, I still couldn't keep anything in my tummy. I must have really been full! The weekend came when I had my best explosion yet. I woke up to a bed, wall and floor covered in yellow soupy poop. Daddy was lucky that my Grandma R was visiting me that day and I was put in the bath while Daddy cleaned up my room!<br />
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After all this poop and no calories for days, Mommy made another appointment with Dr. Rosner and my dietician. At this point I had started to take some formula and my dry crunchies again with no side of vomit. Dr. Rosner made fun of me eating my "Veggie straws". Stating that they probably have negative calories after I have worked my chewing muscles! She said that I am a trouble maker and that I should be nicer to Mommy so she can relax and watch a T.V show!<br />
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I was weighed in at 20 lbs 15oz (so I had lost half a pound). The new plan is to play with some sensory toys to get used to soft and wet things without dealing with food. Also to be topped up via Gtube with Pediasure with Fiber (making sure I get 24 oz of formula/pediasure a day). However, we haven't been able to locate this type of pediasure yet... hmmm . Dr. Rosner does not want me to have juice orally (that's good because I don't like it anyway). But once in a while I can have prune juice in my tube. From this experience, I got some new slimmy toys.. oh boy!<br />
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My parents sent me back to daycare this past Friday. Lucky me, I get to go for a day and then get pulled out to visit McMaster on Monday. Sunday night I was extremely congested and woke myself up coughing every 2 or so hours. My nose was like a faucet. I am now back to my normal snot creature. Just in time for my update with Dr. Kozenko.<br />
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My Daddy and Mommy and I headed to McMaster. Along with my snot nose and lack of sleep. I was not in the mood to be trifled with! Our appointment was at 3pm and we were finally escorted in to the room at 3:40pm. I saw Mariya and Amy (Metabolic dietician). My parents apologized for my demeanor as I am usually quite the charmer but not today.<br />
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Mariya commented that she didn't even recognize me that I have grown so much. She asked what has changed. Well.. A lot actually! My mommy listed some points about my progress and my limits and that I am attending daycare part time but I have been getting some colds while I have started there.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgApWftNLW8LbCxY3tXzDaTRbgNaFZyd5YPZGNJZygEnwjX3x-9cevsQFG2GQMain12qGSofnOaAU5YhCrReSeYhjCp4Ay5CkQhEtSrV4BKmKB0hQvmtQ9ByzDa7_G6CN9Df9_e6K3ElM/s1600/IMG-20121001-01256.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgApWftNLW8LbCxY3tXzDaTRbgNaFZyd5YPZGNJZygEnwjX3x-9cevsQFG2GQMain12qGSofnOaAU5YhCrReSeYhjCp4Ay5CkQhEtSrV4BKmKB0hQvmtQ9ByzDa7_G6CN9Df9_e6K3ElM/s400/IMG-20121001-01256.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Mariya Kozenko (my living guardian angel)</td></tr>
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She commented that she has seen many kids and that I was a very smart boy! She said that my speech and feeding will come with time. However, she suggested that I take on swimming as a hobby as it is very good for kids with hypotonia. She said that kids with hypotonia overcome their muscle weakness with strength, so that should help me. She said she would like me to go more than my usual once a week. She said that she is pleased to hear that I have been shipped to school as it will help me to see other kids and also my colds have been good to build up my immune system.<br />
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There wasn't really any talk about genetic counseling as no one is very familiar with my disorder and it doesn't make sense anyway. My mommy has no symptoms of mitochondrial disorder and I was very severe. So if I were to acquire a sibling it would be a toss up, we don't know if it would be another Ethan or another Leeanne. There is no way to know until birth. However, my mommy would have to give birth at McMaster and hope that Mariya is on call.<br />
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We left with this picture and with Mariya insisting for an invitation to my wedding in 18 years. She's trying to marry me off young!<br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-76066938908626464622012-09-09T07:26:00.001-07:002012-09-09T07:31:05.955-07:00So angryWe have been going back and forth with Blue Balloon this last week. Trying to get feeding Therapy for Ethan.<br />
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Originally we had gone back and asked if they would take a clinical clearance report from Ethan's community SLP. They said no, because of their comfort level we would need to present medical evidence from a swallow study and upper GI study that clears Ethan medically.<br />
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I was thinking maybe with Ethan's 1 month swallow study no one will help us, even though he is clinically cleared. So I made a call to McMaster feeding clinic to set up testing. <br />
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Kate is on mat leave, so the other OT Angela was there to take my call. I explained about Ethan, and she remembered a bit about his case. I explained what Blue Balloon needed and what our community SLP had said.<br />
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Angela said that basically if an SLP has cleared someone clinically there is not much they can do about getting these tests done. She said there is a huge wait list as outpatient tests only happen on Thursdays, and before they even think about doing these tests, the patient goes through a clinical observation where she watches them eat. If they are cleared clinically, they don't go through the tests.<br />
As Ethan has already been clinically cleared by their community SLP, she assumes that there would be no need for testing and subjecting him to the additional radiation. She offered her number so that Blue Balloon can call her to talk about it. However, I mentioned that we have already suggested calling to get clinical clearance by MAC and they won't, but we'll mention it again.<br />
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Frustrated, I did not want to talk to Blue Balloon, so Shawn made the call to them. He reiterated what was said between Angela and myself and said that we could get our community SLP to submit a report to them clinically clearing Ethan. He asked what had made them come to the conclusion that he needs medical clearance and their recommendation to stop feeding Ethan at once. The Blue Balloon SLP said that their assessment was based on the results at Ethan's 1 month swallow study. Shawn told her that for all intensive purposes that at 1 month old Ethan was basically a dead child!<br />
Shawn asked if they have experience with children that have feeding aversions and are tube fed. She said yes and said that they have a child who they are helping currently. <br />
She said that if we get a report from our community SLP that they would review it and decide from there.<br />
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Our community SLP is writing the report and will give it to us next week to pass on to Blue Balloon.<br />
Which leads us to today's email from Blue Balloon.<br />
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The SLP mentions now that they do not do "food therapy" they do something called "OPT", and with conversations with us she thinks we want "food therapy". No duh! We're there because Ethan is not eating! We have no idea what therapy we want or what these are as no one has explained that there were different programs there or what they are. We had only received "We can't do anything until we get these 2 medical tests and he's cleared medically not clinically". She's asking what specifically we are looking for.<br />
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WE DON'T KNOW!!!!!!!!!!!!!! Feeding therapy to us is, spend time with him, and figure out what therapy he needs to progress. If we knew exactly what his deal is, we wouldn't be asking!<br />
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In addition I have called Ethan's OT at Kidsabaility to see if she can take him on for more sessions dealing with sensory techniques and not fine motor skills.<br />
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So we wait...<br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-8176524053396496452012-09-01T12:15:00.002-07:002021-05-17T06:30:57.315-07:00The Blue Balloon BurstsEthan is in bed recovering from a nasty cold. However, we know you all want to know the details of our therapy session with "Blue Balloon". So we will let little man sleep while we fill you in on what transpired.<br />
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We met at the facility and had packed most of Ethan's menu in his lunch pail to bring along a proper cross-section of his food intake. Our lengthy food journal was in tow and we were prepared to get down to business. Ethan was having a light eating day so far as he had puked in the morning and didn't want much to drink after that. He was only at 7 ounces by 3:30 and didn't want to take any sippy before going to the appointment.<br />
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We were greeted by Jennifer the SLP and escorted into the therapy playroom where she proceeded to ask us questions about Ethan's history (while having Allison's assessment report in hand). We explained that Ethan was born with a severe mitochondrial disorder and that it was diagnosed as reversible. We explained what this means for Ethan, that he was severe and had these issues, but now he's becoming stronger and has stabilized. Ethan played while we filled her in on Ethan. Kora then joined us to talk about Ethan, she also brought along her student helper who was taking notes. Jennifer told us that there was another SLP in the building more experience working in Pediatrics, so she was going to bring her in as well for some ideas.<br />
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With Jennifer and Kora in the room the conversations were focused on what Ethan has been doing and what changed to bring us to Blue Balloon. We noted that Ethan had eaten well since our initial tube wean in April and it was only a few weeks ago that there seemed to be a significant regression. After continuing our story, Jennifer excused herself to go find Sara the other SLP. Kora continued to play with Ethan showing him how to activate the self propelled turtle toy in the room.<br />
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After a few moments Jennifer and Sara returned. "I have filled Sara in on Ethan's history" she said, "and I think she has some questions for you." Sara introduced herself and shook our hands. She then looked at us with what seemed like very forced and not at all genuine positivity. She asked very poignantly about Ethan's medical tests and their outcomes. We repeated the information of his medical testing consisting of one study done at one month showing a delayed swallow and a small amount of aspiration, the second at 6 months old which was entirely inconclusive as Ethan was just not in the mood to eat barium solution. She then asked "who cleared him to start feeding orally?" - A fair question - "No one has ever medically cleared him to eat, although clinically he's been cleared to continue" I muttered. Suddenly, clouds began to fill the room. A storm started to brew.<br />
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Sara went on to say, "Sometimes as children grow and develop, they become cognitive of how their body is feeling. Sometimes they stop eating because they are trying to tell you that they are experiencing discomfort in either their esophagus or their GI track." -Leeanne asked, " He has been eating almost his entire calorie requirement to maintain weight for 5 months and has never been sick, shown no discomfort, no vomiting, and no gagging and just one day stops eating as much because he's now suddenly become aware that there may be a physiological issue? " Sara then replied with an air of insincerity "That's a good question, sometimes when children get older they are able to say no." Leeanne responded. "It seems weird that he would just do a 180. To me it seems like it would be more of a sensory issue with him."<br />
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Silence filled the room. Sara and Jennifer conferred for a moment using only their eyes. Jennifer continued by saying "We don't feel that it is safe for Ethan to continue to take food by mouth since Ethan has had no medical clearance and only clinical observation. There is no way to see from the outside what is happening in Ethan's body. We would suggest that you schedule both another swallow study and and upper GI exam and ensure that there are no physiological reasons for Ethan's regression before we begin treatment." Before the silence could come rushing back into the room I added "are you certain that these tests are necessary as they can take 4 to 8 months to schedule, welcome to free health care, then even if we do get one set up, Ethan may simply have no interest in eating during the 30 minute window we have to do the test? Sara responded "we don't feel comfortable treating him until he's been cleared by both these tests." - at this point I should note that Sara comes to us from the US where tests like these don't have as long a waiting period. They suggested that Ethan should stop all oral feeds immediately until these tests are administered and cleared medically. They indicated that Ethan could come to OT sessions with Kora to work on play skills, however they will be doing nothing with food. (Just what we always wanted to pay someone $125 to play with our child with NO food for 50 minutes).<br />
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Since the three therapists now realized they had shattered all our hope and aspiration that this visit would result in steps forward, Kora decided to leave us with an exercise. She borrowed Jennifer's person and showed us some joint compression techniques. She didn't mention what it would do or why we should do it, she just showed us something for our troubles, too bad Ethan doesn't stay still long enough to compress his entire body one part at a time. We left with Kora saying that she will be on vacation for a few weeks but would like to set up a few therapy sessions which they would call us with a few session times if we decided to have them.<br />
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Ethan was tube fed on the way home as he still did not want his sippy.<br />
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When we arrived home there was a lot to discuss and we had only a few minutes before Leeanne was off to dinner with some friends. Basically, I was feeling more defeated than ever and came across like a total nut job. I was so worried that these people had now told me that by feeding my son I was severely endangering him. In addition, They were very concerned that he may not be taking enough nutrition (based only on the numbers). With these two things in mind I was focused now on "Shawn, you can't feed Ethan or you might kill him" and "Shawn, you better make sure you feed him 900 calories or you could be harming him". That's all I could think. Leeanne on the other hand was much more level headed. She realized, as with many other things, advice needs to be taken with a grain of salt. She tried to remind me that Ethan has been eating perfectly well for months and that he obviously doesn't need 900 calories (since his maintenance level is running around 470) but I couldn't let anything convince me otherwise. Sorry again to my wife, I can spiral downward pretty quickly and need some time to digest and bounce back from experiences like this.<br />
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In summary, we didn't get the answers or guidance we anticipated from Blue Balloon. We do understand that they need to protect their liability and make sure that they are comfortable with providing Ethan therapy. We just wished that this was discussed in the first assessment and we didn't have to pay for basically a second assessment with the same people. <br />
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The next day, it just so happens that our community feeding team were scheduled to join us, as Ethan has started a cold, which this time has made him vomit as soon as food reaches his belly, he was home with Leeanne, puking and coughing all over her! They met with Leeanne in the morning however Ethan was snoozing. Lee didn't mention anything about our visit to Blue Balloon but did suggest that a little bird had told us we should get a swallow study done before continuing to feed Ethan. She also discussed the sudden change in Ethan's food intake. They weren't surprised by the decrease in intake as there had been a lot of changes happening and it is very common with children who have been tube fed to have significant set backs now and then. They took the stance that at this stage, any attempt at a swallow study could be detrimental to his progress as it would involve strapping him into another X-ray machine and force feed him barium which would be very traumatizing for him. They also noted that the wait is at least 6 months and because Ethan is doing so well clinically, they may not take him anyway. Not that we're opinion shopping or anything, but it certainly seems odd that there is such a disparity between the two opinions.<br /><br /><br />
After the feeding ladies finished up, they gave us some fun things to try with Ethan and reminded us to keep offering foods but never force anything. Leeanne had one more thing to do before this whole fiasco would be done. Lee took Ethan in for a check at the hospital clinic which included an impromptu weigh in. Lynn (our dietician) set the scale, Ethan was stripped down and propped in the seat. A moment passed as the scale took its reading. 21.8 ounces? Really? He's gained 1 pound in 18 days! Thats Crazy! based on our slight change in his feeding, he's probably up to about 550 calories which, although much less than 900, has still created one pound of mass in our little guy. He has gained twice the amount that is usually gained in the average child over 18 days. Well dad, you missed the mark on this one again. Guess you don't need to stuff him full of food just yet.<br />
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With the news from the clinic and the feeding ladies, we discussed again how to proceed. Here's the plan (as it stands). We're going to try out Blue Balloon for their OT services on a probationary basis for a few weeks, we will not talk about food, but there may be some sensory techniques they can offer. If we don't get anything significant then we'll explore other avenues. Secondly, we're going to continue to feed Ethan by mouth any time he is willing to accept it. We will supplement his intake up to 22 ounces per day to make sure he gets enough calories for Ethan's specific needs (which appear much less than the average). Finally, we're not going to put Ethan through any additional tests and instead move forward and explore the sensory side of eating with him.<br />
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Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-90283132816565742432012-08-29T19:58:00.002-07:002012-08-29T19:58:31.618-07:00I'm sorry Ethan Daddy failed you...Hi Everyone,<br />
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I'm going to be taking the reigns for this one, but don't worry Ethan will be back again soon. As you may remember, a few weeks ago we had Ethan weighed again. He put on 11 grams since our last weigh in just one month earlier. Suffice it to say, this isn't enough. His pediatrician told us he needs to gain 400 grams by his next checkup or we would have to explore more drastic measures. <br />
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We thought we were doing pretty good so far. Ethan was eating 18 ounces per day and was occasionally eating some solids. I know we didn't have a human garbage disposal on our hands but we felt like he was making progress. That weigh in really hit home that we were nowhere even close to progress. It was suggested that we increase his formula concentration a bit to pump up the calories which we did. Our increase turned into his decrease. We increased his concentration by 14% and in turn he decreased how much he would take by 33%. Doesn't take an accountant to figure out that this didn't work. Now Ethan was only taking 12 to 14 ozs per day. <br />
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By the weekend it was getting pretty upsetting. He still wasn't taking more than 14 ozs and had basically started shaking his head and swating everything away. We were on a one way trip back to square one. What isn't ever explained to you outright is how much does your baby need to eat? Well the internet suggests that Ethan needs 900 calories per day to maintain healthy growth and development. Well, after doing some math on his 18 ounces per day, he's pushing about 450 calories and maybe another 100 or so in the small snacks he sparsely accepts through the day. So... just over half what he needs. That's not going to do it.<br />
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Many of you may know me as a very positive and -glass is always full kind- of person. I tried to take all of Ethan's issues and look beyond them to see that he is fine. I realized though that I was living in a dream world. Ethan is not fine. He is falling and his daddy isn't doing anything to catch him. I lay awake that Saturday night thinking of my little Mito Warrior. I lay awake wondering what can we do. I lay there holding back tears as I realized I wasn't seeing the realities right before me. I'm sorry Ethan Daddy failed you, I'm sorry Leeanne, I wasn't here.<br />
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The hardest thing is the fighting that we had been doing. I know that it's been because of our vastly different views of situations. We don't fight over who should take the garbage out, or my beard hair left in the sink or even when Leeanne's hair clogs the vacuum cleaner . We fight about whether or not we should tube feed our son another 4 oz. Whether it's the right time to do his physio exercises, whether or not to fix the position of his weak foot, to leave his shoes on or take them off, whether or not to pay for private therapy. We do not fight about what normal couples fight about and it kills us. I realized that maybe I wasn't seeing what I should be. I realized I wasn't seeing the difficulties my son is facing.<br />
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I spent the next several hours into the middle of the night catching up on research that Leeanne has been trying to show me, and looking for options and trying to figure out what support is actually out there. We concluded long ago that his community feeding team wasn't helping us at all. They join us for a few minutes once a month and ask "did he try anything new?" we list all the items he threw on the ground until we get to the "oh this time he put a crispy mini in his mouth". They proceed to rhyme off 5 or 6 things that are sort of like a crispy mini and say "try all these and we'll see how it goes?" Where are the oral exercises, the suggestions for environmental changes, where's the hands on approach? It doesn't exist here. They rarely asked to see him eat, they never showed us any feeding methods or techniques, and worst of all, they schedule there in home appointment for days that Ethan isn't even here, and that's apparently ok with them.<br />
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After browsing the web finding nothing local for feeding support and nearly coming to the end of the internet, I found Blue Balloon. <br />
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Blue Balloon is a local private therapy group near Northfield and Bridge. We sent an email giving them Ethan's story and they replied by scheduling us for our initial assessment. A few days later we joined the site coordinator Allison for our assessment. We recounted the whole story from start to finish and described our frustrations and our feelings up helplessness with the lack of guidance and help we've had so far. Allison invited her OT Cora in to join us and once she was up to speed we were given some homework. We have been tracking Ethan's feeding for a week now using a log. So far, it's been pretty depressing as most of the entries are: "Ethan started to take his sippy but stopped after only a few ounces." or "the site of food makes him scream and claw away" We track his mood, his environment, who fed him, all the types of food we offered and what he did with them. Hopefully they can find something in our scrawling that provides them some idea of how to help.<br />
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We return there tomorrow afternoon to try and devise a plan. Their preliminary assessment suggested appointments once or twice a week with both their occupational therapist and their speech therapist. Sounds like what we have now only it costs $250/wk ($13,000 per year, yup that's the accountant coming out). So far they seem to be more hands on and willing to teach us something. <br />
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Since Ethan isn't eating very much, sometimes only 6 ounces a day, we've had to resume tube feeding. I can't begin to relay how devastated I was the first time I had to tube feed after Ethan has shown so much strength and will over those 4 months of eating lots every day. Now it's like none of that mattered. Now everyday we're tube feeding more and more. <br />
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I hope our new friends can help, and I hope they can help fast. It
seems to me that we're already pretty far behind the curve as everyone's
16 month old kids are eating themselves silly and starting to talk.
Ethan's pretty far off both those events.<br />
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Please keep Ethan in your thoughts, we need all the help we can get for him, now more than ever. Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com2tag:blogger.com,1999:blog-8031466492348013157.post-73229992741956375542012-08-15T18:07:00.003-07:002021-05-17T06:31:58.304-07:00The Ethan ultimatum, must gain weight!Hello All, Ethan here!<br />
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A lot has happened over the past two weeks so let's get right down to it!<br />
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On Monday I played hookie from day care with Mommy and Daddy and went to see Dr. Rosner, my pediatrician. We were feeling very anxious about this visit as it involved another important weigh in. We arrived at the clinic and endured a very short wait before being escorted into one of my usual rooms by our dietician Lynn. She did my weight and length and here's my new stats:<br />
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Weight: 20lbs 8.4oz<br />
Height: 31 inches (done by inaccurate measuring tape.)<br />
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Those of you who remember my last weigh in, I was 20lbs 8oz. Not exactly packing on the pounds here. This was rough on both Mommy and Daddy because I was eating tons of formula, some extra foods, and it really seemed like I was getting heavier. Now just to put it all in perspective, I gained .4 ounces or about 11 grams in 4 weeks. I am supposed to be gaining 400 grams every 4 weeks. So I was short about 389 grams (or 97.25%, thanks dad, now put away your calculator) for those four weeks. Despite this set back, we carry-on, our new plan of action is keep doing what we're doing but lets make that old formula bottle a little more potent, we're on to 4 scoops per 6 oz from 3.5 scoops. Nothing too drastic but we're hoping it makes the difference.<br />
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After the weigh in and measurements, doctor Rosner came in to see me. We talked about some of the new things I'm doing. She looked me over and mentioned that my shoulders were getting a lot stronger but now my ankles are weak. She checked my lungs and heart and I sounded good. She added to the notes on my feeding and we set the goal of one month for me to gain weight. If I don't pack on 400 grams by September 14th more drastic measures will need to be taken to fatten me up!<br />
The reintroduction to tube feeding was mentioned. :( <br />
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We glazed over the discussions of removing the tube as the food and weight issues had already trumped that option. Mommy did ask though who would make the final call to remove the tube and Dr. Rosner said it would be her. She then asked us, "Who put the tube in?" Mommy thought for a moment and said "Dr. Stewart". Dr. Rosner appeared confused. "You know, the head of surgery at Mac." Dr. Rosner, still looking awkwardly at Mommy confirmed, "Do you mean Fitzgerald?". Mommy's eyes widened, "Yes!". Dr. Rosner's puzzled look faded as she laughed, "How did you get Stewart?" Daddy chimed in, "Dr. Stewart delivered Ethan." Everyone paused as the cloud of confusion began to lift from the room. Dr. Rosner added poignantly, "Oh, Dr. Stewart is my brother!" Well, what a small world! Before staying to find out if she had any other siblings or cousins in the medical profession we finished up and headed out the door as I needed a sippy and a sleepy!<br />
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Next on the agenda was my Tuesday trip to Kidsability. This was daddy's first time meeting Lori and his first time seeing the facilities! The last visit from Cathy for my gross motor physio workout did not go well and I screamed my little head off the whole time. This left daddy a little concerned about my visit with Lori as I have not been in the mood to be trifled with lately. We arrived promptly at 10 o'clock. It was raining pretty bad and daddy forgot an umbrella (silly daddy). We ran in the front door and squeaked over to reception. "I have Ethan here to see Lori" daddy proclaimed. The woman behind the desk smiled and told us she would let her know we were here.<br />
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A few minutes passed and Lori came out to greet us. I was standing up against daddy's legs and Lori (OT) was excited to see me. Daddy walked me over to our usual hockey player adorned room, yes we walked! (well daddy held both my hands for balance but my feet did some serious one foot in front of the other action). Once we settled in the room, Lori took out some toys for me to play with and asked daddy how I was doing. Other than the stunted growth, daddy had only positive notes to make about my progress. Lori decided to start with some blocks to see if I could stack several on top of each other. She showed me a few times and then left me to it.<br />
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I placed one block on the mat in front of me. Then I reached for a second, on top it went. I glanced around seeking out a third. EUREKA! Block number three found and stacked! Lori was very happy and said that kids my age are usually stacking three blocks. While she was telling daddy that this was great progress I reached out and picked up block number four. On it went! Lori and daddy both stopped. "Look at him go!" shouted daddy. Four blocks was quite the feat as the blocks were getting pretty tall and my shoulders had to stretch to keep adding them. Daddy was sooooo proud he had to take a picture.<br />
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After posing for the snapshot, daddy put away his camera - but I wasn't done yet! I found another block, hoisted it high in the air and carefully placed it on top of the tower. Lori and daddy went quiet with anticipation for what would happen next, would I try another? Would I topple my now wobbly tower? I found the last block laying before me and began to raise it up. Up it went, passed my tummy, past my nose, past the 5 blocks that had already become my day's triumph. I moved the block over the top of my tower and gently placed it atop it's friends. "Six blocks!" Lori exclaimed, "we usually expect that of a four year old!" Daddy reached for his blackberry to take another photo but it was too late, I had karate chopped my masterpiece to the floor.<br />
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With a gleeful sense of curiosity we forged on to playing with a puzzle. Lori pulled out a puzzle which contained 5 pieces all different shapes. A circle, square, rectangle, triangle and oval now lay at my feet. She placed the wooden puzzle frame in front of me which had an empty spot that corresponded with each of the small pieces. She showed me how to put the first one in and let me do my thing. I reached for the square and examined it for a moment. I looked down at the 4 remaining holes and with deliberate intent I placed the square over the hole marked "circle". Darn it, that didn't work. I picked up the piece again and placed it now in the hole marked "square". Perfect! I repeated this process until all the shapes had been united with their puzzle pals and the picture was complete. Lori was happy again and said that I was only supposed to do two pieces to be well on track developmentally.<br />
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Finally Lori brought out some drawing tools and paper. I have so far not shown much interest in colouring as you may recall from our last meeting with Dave. Well, nothing new here, I struggled to figure out which end was the one that made the colours come out. Daddy did his best to help by holding up the marker to me and pointing at the writing end saying "Ethan, this is the business end." I made a few small marks before turning the marker upside down. That was that, I guess we'll leave drawing for another day.<br />
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Happy overall we thanked Lori and made arrangements to return for another session in 4 weeks.<br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-59535167555163990402012-07-30T17:35:00.001-07:002012-07-30T17:35:14.863-07:00School updateHello everyone!<br />
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Just thought I'd give you an update on how I am fairing at daycare, which mommy calls "my school".<br />
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When I was warned that I would get sick more often, I laughed it off and said I'm ready! I've had a cold for the past 2 weeks! Oh these babies and their snot sharing!<br />
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I have 3 ladies that take care of me in the room: Shelby, Betty and Mila.They tell mommy and daddy that I am adjusting well! Napping still seems to be my greatest issue, if only because I'm sick and I keep coughing myself awake. This past Friday, Mommy finally was able to pick me up.<br />
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When Mommy got there I was the last kid there. Mommy was thinking "What kind of job do these parents have that can pick kids up early!". Oh well, I was happy that I got some quiet time with my School ladies.<br />
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Betty and Mila told mommy that I had my best day there yet! Betty said that I seemed to be interested in this toddler car thing that you walk in. So she had put me in and I was tooting all over the pace happy that I was able to move by myself, well as by myself as being in a car could let me. I was the most vocal they have seen me yet. Mommy wasn't sure what that meant as I am usually sounding up a storm. She's hoping I start my vowels and consonants soon!<br />
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The ladies told mommy they were impressed that I clean up my toys after myself. Mommy said that she is making sure she teaches me young so I won't be like daddy! Mila said that she usually does not like carrying kids around because she has a bad back, but she loves carrying me everywhere just to touch my hair and talk to me! <br />
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My days with Grandma are quiet and are a nice break from the commotion at school. Grandma has been teaching me to get down using my knees. So instead of flopping back down on my bum I now fall down on my knees. I now am frequently seen with bruises on my knees, but at least it's a safer way to get down. I just don't seem to get "squatting" yet. <br />
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Mike and Bev Moorhouse surprised me last weekend with a sand turtle! I am excited for daddy to put it together so I can finally try it out! Pictures will follow in a later post.<br />
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I got my second hair cut tonight! Check me out!<br />
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On the medical side of things there's not too much to report. My cold has made it difficult for me to drink my sippys, but I hear this happens to the "normals" too. However, I'm being judged for weight every 3 weeks, so there's some added pressure for me to keep eating. I report to my pediatrician in a couple of weeks for my 16 month check up. Should be fun!Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-51685086445305003462012-07-22T18:42:00.002-07:002012-07-22T18:42:50.398-07:00Day Care = Torture Chamber?A few weeks ago I, Ethan's mommy was offered a job. It just happened to be the same day the second daycare called and asked if we still needed a spot. And that's where Ethan's new adventure began!<br />
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A few Friday's ago Mommy and Daddy took me on a tour of this place called Day Care. They told me that I would be shipped here three times a week. I didn't know what it was supposed to be, but it looked like it moonlights as a torture chamber. I could tell mommy was unsure of this place. It looked a wee bit intimidating!<br />
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My cellmates are 18m-3 years. However most of them are on the upper scale as not many new toddlers get placed. If you've done your math, you will say "Hang on a moment! Ethan is 15 months!" So, not only am I starting 3 months early, I am also delayed in my gross motor skills by about 4 months.<br />
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When we went on our tour I saw things that I forever want to unsee! My cellmates are monsterous! They were all running around with a full set of sharp teeth, yelling in some foreign language that only they can understand. If it wasn't for the over taking fear of these cellmates I would have been more scared for seeing what was outside. A giant concrete slab! I can just feel the concrete rip my bum and feet while I bum scoot during the 1 HOUR we have to be outside. ME Ethan... OUTSIDE... The outside, where there is sun, heat, concrete, grass... everything that I hate in this world! That's what I thought, until we had a tour of "the kitchen". This is were the cellmates go to eat. THIS is where the torture happens... I just know it.<br />
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In this "kitchen" the monsters eat around a table on CHAIRS! Mommy asked if they had highchairs and the lady just started at her like mommy had just said a bad word.... YIKES! I guess not.<br />
I was shown the food menu. Cesar salad, Felafel, pasta salad, Ham, RAW vegetables... What are these people cannibals! RAW vegetables... seriously! Even if I do decide by some complete wave of insanity put these things in my mouth, how am I supposed to chew these things with 5 teeth?<br />
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And then that was that. Mommy made arrangements for my Grandma to look after me the other 2 days. And with the understanding that if I regressed by ANY measure, Mommy agreed to try me out at this place.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mommy ordered me a school backpack</td></tr>
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I started last Monday.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ethan and Mommy's first day of Daycare and Work</td></tr>
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Mommy has been training all week so she has been unable to drop me off or pick me up at daycare, my care has been left with Daddy. Daddy really had to step up to the plate this week! He's had to get me ready each morning and pick me up in the evening. We've been lucky that this daycare lets me stay til 6pm! I bring my own snacks and sippys each day.. as you know I have a hate on with food.<br />
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So far Daddy has been informed that I have been transitioning well. However, no one has asked me so I don't know how I feel about it all yet! So far the only hard transition has been napping. The naps happen on COTS! Yes, COTS! No cribs.... I have been doing my best, however so far the days at daycare I've only been able to sleep for an hour. You would think that by the time I get home that I would be exhausted, but NOPE I am so excited to share with Mommy and Daddy about daycare that I end up wired! I just wait for the next day when it's Grandma time and I catch up on my sleep!<br />
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In addition to my new Day Care adventures. I learned my first "sign" last Tuesday. If you remember way back when when mommy was trying to teach me the sign for "more" and "book", then she gave up doing it all the time because I just didn't seem to get it. Well I now sign "more". Well, close enough. I tap my palm for more!<br />
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What else... Mommy had been teaching me how to climb up the stairs. So now I can do it, with help of course, I'm not that strong yet in my legs to push myself up yet. But once my legs get stronger I have the basics to climb right up the stairs! <br />
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The last bit of information is that I was weighed at the clinic on Friday. Daddy and I went to see my dietician, Lynn at the hospital. I was weighed in at 20lbs 8oz. Which is a 2 oz increase from 3 weeks ago. Lynn is happy with my weight progress considering my increase of physical activity. I am sitting at the 5th percentile for weight. Lynn gave Daddy some measurement guides for how much food a 1-3 year old should be taking and it's scarey! These babies must be eating all the time.<br />
<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-62474164262484746962012-07-14T19:26:00.001-07:002012-07-15T16:55:57.318-07:0014 month AssessmentHello All,<br />
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Ethan here!<br />
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Friday the 13th marked the day of my 14 month assessment. Dave, our friend from infant and child development joined us for some one on one play time to see what I was getting up to these days. Dave is a nice man who carries a HUGE sack of toys, kind of like Santa Clause, only with more educational value and less white beard. The assessment took about forty-five minutes and we played with blocks, pegs, crayons, balls, and I especially took new interest in banging on a cymbal. No I'm not going to turn around and be Mozart tomorrow but I can see I like to hear things make noise! On the other hand, we also discovered that I have no love for crayons. I mean none! Let's hope I change my mind soon as I think Mommy fancies me to be quite the little artist!<br />
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The assessment went well in all areas with the exception of my speech and gross motor skills. Checkout my scorecard! The dots in the white area indicate areas in which I'm exhibiting normal development. The ones in the black area show were I need a lot of work. Anything in the shaded middle would be an area that's on the fringe. Darn that gross motor skills mark! My communication is very good from a receptive point of view but since I'm not actively using any words yet I'm not scoring as high as I could otherwise.<br />
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In other news, Mommy enjoyed a visit with uncle Jay and uncle Jan this week. She dropped me off with Grandma and Grandpa Philp and drove on down to Brantford. While she was away, Grandma played in the pool with me for a whole hour! I'm getting really good at hurling myself off the sides of the pool into Grandma's arms! After some pool time, a long nap, and some "let's make a mess of the living room floor" time, I was ready to go home. Oh No! Mommy's not back from Brantford and she has my car seat!!<br />
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In a quick pinch, Daddy was able to swing by after work with the JEEP! There was a big boy seat that has been waiting for a big boy to use it at Grandma and Grandpees house. Daddy and Grandpa worked together to install it the back and voila! I was ready for the open road, the wind in my hair and the sun on my face!<br />
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No roof, no doors, no problem! I love riding in the Jeep!<br />
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Daddy was nice and kept me off the highway and at the end of the journey we made it home safe and sound! <br />
<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-46580439980885134402012-07-11T05:23:00.001-07:002021-05-17T06:33:27.806-07:00Kate's Kause PlaygroundThis is a post to let everyone know that once in a while I do have a bit of Infant Fun!<br />
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Today Mommy, Me, Sarah and Theo went to a new playground that just opened in Elmira. It's called Kate's Kause Playground. It was built with the idea of being assessable and inclusive. <br />
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"Kate’s Kause is an organization inspired by Kate Meissner, a sweet little two-year-old from Elmira who has Angelman
Syndrome. It is a 100% charitable organization committed to Angelman
Syndrome awareness and fundraising for inclusive community projects. For
a full year now, they’ve been raising money to build a playground in
Elmira that is entertaining and accessible for children of all
abilities. Elmira doesn’t currently have any facilities for disabled
children to use, and parents of disabled children must drive to Guelph
just to be able to let their children use a swing or experience a slide
without it affecting their hearing equipment or other medical
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It is because of this little girl that I can play at this awesome playground! And what fun we had!<br /><br />
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<br /><br /><br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com1tag:blogger.com,1999:blog-8031466492348013157.post-57675933473160857242012-06-22T14:59:00.000-07:002012-06-22T14:59:16.621-07:00A little update about my Mito disorder<div style="color: red;">
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<span style="color: black;"> Today is the one year anniversary of being discharged from McMaster Children's Hospital. I left with a prescription for 12 meds, tube feedings for an hour every 3 hours, head
pokes for blood work once a week, I could barely lift my arms and I had a
prognosis of only living for a year. I feel the strongest and healthiest I've ever been! Mommy took me to my favourite place to celebrate. McDonalds! We went to the Kitchener market food court on King Street. </span><br />
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<b>A little update about my Mito disorder</b></div>
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Dr. T had informed us that there was research being done at the Limeridge Mall (in Hamilton). A few months ago researchers collected 2700 random samples of blood donated by shoppers to test for my particular Mito mutation. (My mutation of a T being a C). They found that out of 2700 samples, that 3 people had this particular mutation, however these people had no symptoms. This research suggests that this mutation isn't as rare as they had once believed it to be. So then what makes the severe symptoms of this mutation so rare?<br />
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The research is starting to point to other DNA mutations passed down paternally. Mommies pass down the C mutation, and daddies pass down some other DNA glitch and voila you get an offspring like me! However, how does one start looking for whatever that DNA catalyst is, when those daddies have no symptoms and there's only been a handful of mes in the world! Good luck researchers :)<br />
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<b>An update of my new tricks</b></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-ZdM63mOWutj6j3QYUgK6rPk29bmKBHAYPq-8jkQSt9Lo9aBy-YV4BAOiukkY_svBSPf7XYkofjikgxcN8SRy_as7HnrRXjCJCQQFtfZh_NsUZyGO99qLz7FXUGowDgSxqzIRNaL_Zes/s1600/IMG-20120622-01030.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-ZdM63mOWutj6j3QYUgK6rPk29bmKBHAYPq-8jkQSt9Lo9aBy-YV4BAOiukkY_svBSPf7XYkofjikgxcN8SRy_as7HnrRXjCJCQQFtfZh_NsUZyGO99qLz7FXUGowDgSxqzIRNaL_Zes/s400/IMG-20120622-01030.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My $2.99 shoes</td></tr>
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Since my last physio session with Pam I have been on a steady learning streak. In addition to crawling up a ramp, I have learned:<br />
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- To pull myself up to a stand in my crib<br />
- To turn and reach from the couch to the table (still only a minimal distance, if it's a big gap where I can hardly touch I fall over, my balance is still pretty wonky)<br />
- I can maneuver the corners while cruising at the ottoman, although I have to be pretty distracted<br />
- I have been pulling myself up to my knees on furniture<br />
- I can clap<br />
-I can say maaaaa (although it's not directed at my mom, I just make the sound)<br />
-I can go on my tippy toes when I'm holding on to the couch<br />
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Yup folks all these are new within 2 weeks!<br />
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<b>An update on Feeding</b></div>
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I've been doing pretty good with my formula. I am down to mostly 4 sippys a day. I take them without too much effort, which is a win for me! However, I still hate solid food, I don't touch it and occasionally will freak out when food is on my tray. I foresee this being a long process, but like everything else I just do things the Ethan way. No one knows what order I'll do things in or at what time, it's just me.Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-492201049186299652012-06-13T14:13:00.001-07:002012-06-13T14:13:38.341-07:00Spider Man and Mount EverestToday was my second last appointment with Pam. She was extra sad today as time spent with me is quickly coming to an end. I made a deal with mommy that I should show Pam my most awesome stuff. And I delivered.<br />
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I crawled up the ramp 4 times all by myself! Pam was holding the creases of my knees to make sure I didn't fall backward, but I did all the forward propelling motion all by myself. Pam told me last time that I should be practicing crawling up a ramp because there's less gravity weight coming down on me. She was right it's much easier to figure this out on a ramp than on a flat surface! Put me on a flat surface and I get all angry.<br />
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Mommy took a video of the second time I crawled up. By the 4th time I was just like Alain Robert! Mommy tells me he's the French Spider Man (A fast climber!)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjItLwnKuqfWvjKguh8-ZVfO8aSJmF3YIgXmUPJFaSZQ3b3pBqZUw-rGJmYygPACL_vQ7jhbU1TasJZpTI33WzJPzIehAidSUbtL3qLWCgr8Y0JyhNJ6wWrqjhAvIXcR7A-TEG7SJgtBnk/s1600/IMG-20120613-01012.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjItLwnKuqfWvjKguh8-ZVfO8aSJmF3YIgXmUPJFaSZQ3b3pBqZUw-rGJmYygPACL_vQ7jhbU1TasJZpTI33WzJPzIehAidSUbtL3qLWCgr8Y0JyhNJ6wWrqjhAvIXcR7A-TEG7SJgtBnk/s400/IMG-20120613-01012.jpg" width="300" /></a>My session ended off with some standing holding on to some dryer pipe and putting some felt balls in a hole. I was distracted by the large pipe and my need to make sure I put all the balls away that I didn't notice that no one was hanging on to me and I was doing it all by myself. I am not used to holding onto something that is not stable (like a person or couch!).</div>
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The only
comment Pam made was that my ankles are weak, so mommy has to go and get
big boy shoes for me so I can practice standing with shoes on to try to
gain more confidence in cruising.<br />
All in all Pam was extremely proud of me today! <br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com1tag:blogger.com,1999:blog-8031466492348013157.post-79698992418005314612012-06-11T07:52:00.001-07:002021-05-17T06:34:10.634-07:00Weigh In and WeddingFriday, the day arrived for my weigh in. Grandma told Mommy that she was going to come with us to make sure Mommy didn't "lose it" if I got a bad result. Ha, so much faith in me!<br />
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We checked in to the Children's Outpatient Clinic at Grand River Hospital, and waited for Lynn, my dietician to arrive. As we were waiting, Patty, one of the nurses came over to talk to me. I haven't seen her in a few months, and it was nice to "talk" to her again without her having a giant needle in hand to stab my head!<br />
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Lynn arrived and showed us to a room where this was going to happen! Mommy undressed me while Lynn retrieved the scale. I was placed on the scale for scrutiny! I absolutely hate this part, and began screaming at the top of my lungs as soon as I sat down. My result rang in and I had gained 3 oz. SOMEHOW. Mommy and Grandma were extremely surprised because I have been eating LESS than before my last weigh in. How could this be? I guess stranger things have happened. It was agreed that my formula concentration should change a bit, so now it's 3.5 scoops of formula to make 6 oz instead of just 3 scoops. So over the day I will get 72 more calories. Lynn said just a little could make all the difference. So we'll try this and my next weigh in has been scheduled for the end of June. Upon leaving, Patty made a joke about how I likely knew I was being judged today and saved up all my poo just for today! Hmmm...<br />
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As a reward Mommy decided to take me to McDonalds, you see because I love FRIES! Yum Yum! I even tried a few little pieces of Grandma's chicken nuggets. I didn't seem to mind as long as I was given the side to touch with the crunchy batter!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk2RQUEFOI4IKFNEdnRtIpJvwCC0oVRuaEWLpwobxWwir95_rNBT5Y7VQqzBx1Gs25HV80UYSQdAPkCR4sqCROSoNr0Tht60hyKgozPmi_P9CGZc-MkMp7UhiRUYXwnR6nYzEZyCgbgPo/s1600/June+8+McDonalds.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk2RQUEFOI4IKFNEdnRtIpJvwCC0oVRuaEWLpwobxWwir95_rNBT5Y7VQqzBx1Gs25HV80UYSQdAPkCR4sqCROSoNr0Tht60hyKgozPmi_P9CGZc-MkMp7UhiRUYXwnR6nYzEZyCgbgPo/s400/June+8+McDonalds.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">McDonalds</td></tr>
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After McDonalds my Mommy had to get everything ready for us to go to a wedding this weekend. My Aunt Heather (Mommy has been friends with her since Grade 7) was getting married on Saturday to Sean and Mommy was the Maid of Honour. Or I guess in this case MATRON.. Mommy doesn't like this word as it makes her sound old. So MAID it is! Daddy was going to be my keeper at the wedding. HELP ME!<br />
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We got to Newmarket Friday evening and we were lucky enough to stay with friends that flew in from Vancouver! Thank you Mr. and Mrs. Rudkin x2! ;)<br />
<br />I was put to bed, although I had plans of my own and did not fall alseep until 3:30am. I was playing on the bed learning new tricks! The morning came early has Mommy had to be at Heather's hotel room at 7:30am for hair and makeup application. I was lucky she was nice enough not to yell at me in the morning.<br />
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Wedding day came and I got to see my Auntie get married FINALLY! I would've been a lot happier but it was hot outside and I desperately needed a nap. I was happy to hear that the Bride's sister, Louise had come by in the morning and turned on the air conditioning in the hall to something resembling freezer cool! I guess it takes a Mommy to know these things!<br />
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While pictures were being taken Mommy informed Daddy that he should take me for a drive in the air conditioned car where I'd likely fall asleep, then he could bring my car seat into the hall if I was still sleeping.<br />
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This next part angers Mommy, so I am going to say this as a whisper.....<br />
Mommy came out of the hall at one point and saw Daddy talking to a group of people while my car seat was beside him. Remember Saturday, it was 35 with the humid x... Why was I sitting there in the hot hot sun? Mommy took a peak at me and saw that I was sleeping, covered in a heat rash and my cheeks were red red. Mommy calmly yelled at Daddy and said she was taking me into the hall. She put me beside the head table where I finished the rest of my nap in the air conditioned hall. *sigh*<br />
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Dinner began and I was so irritable. I did not want to sit down or be held. Remember, I was being held all day and hadn't had the chance to scoot anywhere. I was lucky I had Tabitha (1 of the bridesmaids), she had an iphone and downloaded Katy Perry. I sat content on mommy's lap with Tabitha's iphone in front of my watching Katy Perry sing and dance oblivious to what was actually going on around me! I was soooo happy in Katy Perryland!<br />
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Daddy delivered his speech on Mommy's behalf and people thought he was funny. This is why she didn't make Daddy feel worse about leaving me to char like a piece of bacon outside in the heat! He would have made her speak in front of 90 people and she would have died. <br />
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Unfortunately as the evening rolled on, my Katy Perry left me and I was unhappy again and needed to go to bed, so we had to make it an earlier night than we had anticipated. But all in all I enjoyed my time at my first wedding!<br />
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Sunday we got back into town and my rash covered my legs, feet, arms, ears and bum. I am not bothered by it but it looks really bumpy! On top of my heat rash, I am sooooooooooooo CONSTIPATED! I haven't pooped in 5 days! I keep trying and I grunt and hunch over.. I even tried side sitting but nothing was working. Daddy gave me a warm bath to ease my pimples in my bum (TMI I know but hey!) while mommy pumped my tummy full of water... The only blessing for this stupid PEGasaurous! At 8pm I finally had a poo. It hurt so bad but it was finally out. It was glorious! It was the size of my foot. Yuck!<br />
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Last night I finally had a nice uninterrupted sleep. My first in a week. <br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-87016020794251067742012-06-07T12:33:00.001-07:002021-05-17T06:34:31.703-07:00The day before Dooms DayI had my physio appointment with Cathy today. I am not sure if I had mentioned that at my previous Cathy appointment I went into a temper tantrum and didn't come out.<br />
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So mommy was a bit worried about me. Cathy had to change our usual appointment slot as she is now at a nursing home during my usual slot, so we've been trying a few different times to see which works well. I really miss my noon time! Ah well. Last time we tried later, which did NOT work. This time we tried earlier. Mommy had to wake me half way through my slumber, but at least I got a little sleep, so she was hoping I would be okay.<br />
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My session started off okay, however as soon as my hands and knees portion of the session came I freaked, and fell into one of my toys. Can't these people tell that I want to do what I want to do, when I want to do it. At that time I did not want to hands and knees, I just wanted to sit and play by myself not bothering anyone. I screamed through about half the session, but I did the exercises this time.<br />
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We did a few more exercises and mommy took a couple pictures of me in various positions. She's mean.<br />
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<tr><td class="tr-caption" style="text-align: center;">practicing side sitting</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj11doneGWyv2UyBYT5s3OUCt6_PRuefaNhJ440gGA7PfIdICERS7HaNIQZnbgBdfy0O04VRyvgVdE4voMATrptIQ2q8LdmA7B5JBdA6SI3OJjLMVO-KpjB-NiFYSJCy-4Nl_kkBmy-208/s1600/IMG-20120607-00981.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj11doneGWyv2UyBYT5s3OUCt6_PRuefaNhJ440gGA7PfIdICERS7HaNIQZnbgBdfy0O04VRyvgVdE4voMATrptIQ2q8LdmA7B5JBdA6SI3OJjLMVO-KpjB-NiFYSJCy-4Nl_kkBmy-208/s400/IMG-20120607-00981.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wheelbarrow weight baring</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVe17gJXyYoI7r8CU8_9O5ZT1NYZBKgXiqVRyV9ak8sqCQCVdM6aVyeCMgTPq2gdODdZWu3BZol9s_Sq1saxV61N1BTV-vm-UqXWJl5iSxjwYWUUJMGRtB2isbLh0WjOhTZ8RjcJXGsz0/s1600/IMG-20120607-00982.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVe17gJXyYoI7r8CU8_9O5ZT1NYZBKgXiqVRyV9ak8sqCQCVdM6aVyeCMgTPq2gdODdZWu3BZol9s_Sq1saxV61N1BTV-vm-UqXWJl5iSxjwYWUUJMGRtB2isbLh0WjOhTZ8RjcJXGsz0/s400/IMG-20120607-00982.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Is it over!?</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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As a reward mommy let me go to a restaurant in uptown Waterloo, The
Bauer Kitchen. We met my buddy Theo, his mommy and his grandma there. It was Theo's third time at a restaurant. His mommy usually doesn't take him places where he'd have to eat, as it's a chore just trying to get him to eat too and gets pretty stressful. However, he's been doing decently with the solid foods as of late, so why not try eating out! <br />
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We were pretty good kids at the restaurant and lunch went over well. I ate a few of Theo's Grandma's fries, and I think I put too much in my mouth... gagged... and puked. All my hard work gone in a split second! *sigh* Mommy is excited that she has some left overs... which she just realized she left in the car... <br />
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My weigh-in is tomorrow morning at Grand River Hospital (GRH). Wish me luck!<br />
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0tag:blogger.com,1999:blog-8031466492348013157.post-69746153645957948362012-06-05T13:11:00.002-07:002012-06-05T13:11:49.141-07:00Dr. T and Mr. E<div class="separator" style="clear: both; text-align: center;">
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Today was my follow up with Dr. Tarnopolski. If you remember at my last appointment he had taken me off of my last mito meds and wanted to see me today to see if I was adjusting okay. Apparently some of the meds take a month to get out of the brain. Now the plan was to give me a full workup of blood level testing. </div>
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We got to the Neuromuscular clinic and there must have been about 15 people in the waiting room. Only standing room was left.. and that's not a good thing for a muscle disorder clinic! Obviously they were running behind. Our appointment was for 11:15am, which runs over my lunch time... great!</div>
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We finally get called into one of the rooms at 12:30pm, Dr. Tarnopolski's assistant Heather informed my parents that there were toys on the bookself that they could get for me to play with. My mom thought "Strange they had never pointed out this fact before". Well, we found out why! It was another hour before we got to see Dr. T. </div>
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<tr><td class="tr-caption" style="text-align: center;">Mommy, Me, Pengy, Daddy</td></tr>
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I was getting pretty cranky waiting for all this time! I did not want to take my formula as it was cold! My parents tried to play an episode of Special Agent Oso on their blackberries, however being in a concrete cell did not help and the episode was constantly doing this thing called "Buffering" So I just got more irritated. Mommy tried distracting me by taking pictures.</div>
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Finally Dr. T came into our room and apologized for the wait, apparently everyone he saw today was complicated. Don't worry Dr. T, I've been there! </div>
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He tested my reflexes and said they were normal, picked me up testing my tone, and said I had TRIVIAL hypotonia! Sweet, I hear that's good!</div>
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He asked my parents if I was walking yet, NOPE but I am doing some slow shuffling down the giant ottoman in the loft. Mommy said I can now sit up from laying down on my own, he said that this was excellent. He asked if I was saying any words yet, NOPE, but I am making a lot of sound. He said that's okay because I am only 13 months and am a boy. He was informed that I have been off my tube since April 24th, however I had lost 13oz. He said if I lose more, maybe try putting me back on the creatine, since it won't hurt anything. He was impressed that I haven't had any regression! And is excited to talk to his buddies at the Mito conference next week about me. Since I did not experience any regression off my meds, no blood work is necessary! He had seemed to forget about blood work for mommy and daddy, however neither one of them piped up to remind him!</div>
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My next followup appointment with Dr. T is in 6 MONTHS! I must be doing well!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3ONP-Iv2eZUOUr_82NXK45BrrEsZHiA73CNEHCFPjqDrrtg6Z0Q9tqpoiCnezZgAtOrC_1f5fRiZlWfbMYW2vivu2yA7xJ_RqAXjWOP1TDtk3mWDXM30K9cdkTw-vMbVVnpD1CyWAWSA/s1600/IMG-20120605-00980.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3ONP-Iv2eZUOUr_82NXK45BrrEsZHiA73CNEHCFPjqDrrtg6Z0Q9tqpoiCnezZgAtOrC_1f5fRiZlWfbMYW2vivu2yA7xJ_RqAXjWOP1TDtk3mWDXM30K9cdkTw-vMbVVnpD1CyWAWSA/s400/IMG-20120605-00980.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. T and Mr. E</td></tr>
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<br />Ethanhttp://www.blogger.com/profile/15533977127651165172noreply@blogger.com0