Unscheduled hiatus

I want to apologize for taking an unscheduled hiatus. A lot has happened to me since we last spoke.
This is going to be a long winded post.

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.

The first day of my laxative I did not feel like doing anything!

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.


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!

 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!

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!

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.

 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.

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.

Dr. Mariya Kozenko (my living guardian angel)

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.

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.

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!

So angry

We have been going back and forth with Blue Balloon this last week. Trying to get feeding Therapy for Ethan.

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.

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.

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.

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.
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.

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!
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.
She said that if we get a report from our community SLP that they would review it and decide from there.

Our community SLP is writing the report and will give it to us next week to pass on to Blue Balloon.
Which leads us to today's email from Blue Balloon.

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.

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!

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.

So we wait...

The Blue Balloon Bursts

Ethan 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.

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.

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.

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.

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.

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."

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).

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.

Ethan was tube fed on the way home as he still did not want his sippy.

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.

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.

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.


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.

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.

 

I'm sorry Ethan Daddy failed you...

Hi Everyone,

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.

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. 

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.

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.

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.

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.

After browsing the web finding nothing local for feeding support and nearly coming to the end of the internet, I found Blue Balloon. 

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.

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.

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. 

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.

Please keep Ethan in your thoughts, we need all the help we can get for him, now more than ever.  

The Ethan ultimatum, must gain weight!

Hello All, Ethan here!

A lot has happened over the past two weeks so let's get right down to it!

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:

Weight: 20lbs 8.4oz
Height: 31 inches (done by inaccurate measuring tape.)

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.

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!
The reintroduction to tube feeding was mentioned. :( 

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!

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.

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.

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.

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.

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.

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.

Happy overall we thanked Lori and made arrangements to return for another session in 4 weeks.

School update

Hello everyone!

Just thought I'd give you an update on how I am fairing at daycare, which mommy calls "my school".

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!

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.

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.

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!

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!

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.

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.

I got my second hair cut tonight! Check me out!

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!

Day 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!

 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!

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.

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.

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.
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?

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.

Mommy ordered me a school backpack

I started last Monday.

Ethan and Mommy's first day of Daycare and Work

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.

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!

 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!

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!

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.

14 month Assessment

Hello All,

Ethan here!

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!

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.











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!!

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!

No roof, no doors, no problem! I love riding in the Jeep!

Daddy was nice and kept me off the highway and at the end of the journey we made it home safe and sound!

Kate's Kause Playground

This is a post to let everyone know that once in a while I do have a bit of Infant Fun!

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.

"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 peripherals.

It is because of this little girl that I can play at this awesome playground! And what fun we had!

A little update about my Mito disorder

Yum Yum!

 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.









A little update about my Mito disorder

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?

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 :)

An update of my new tricks

My $2.99 shoes

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:

- To pull myself up to a stand in my crib
- 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)
- I can maneuver the corners while cruising at the ottoman, although I have to be pretty distracted
- I have been pulling myself up to my knees on furniture
- I can clap
-I can say maaaaa (although it's not directed at my mom, I just make the sound)
-I can go on my tippy toes when I'm holding on to the couch

Yup folks all these are new within 2 weeks!

An update on Feeding

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.

Spider Man and Mount Everest

Today 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.

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.

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!)

 

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!).

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.
All in all Pam was extremely proud of me today!

Weigh In and Wedding

Friday, 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!

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!

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...


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!

McDonalds

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!

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! ;)

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.

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!

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.

This next part angers Mommy, so I am going to say this as a whisper.....
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*

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!

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.

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!

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!

Last night I finally had a nice uninterrupted sleep. My first in a week.

The day before Dooms Day

I 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.

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.

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.

We did a few more exercises and mommy took a couple pictures of me in various positions. She's mean.

practicing side sitting

Wheelbarrow weight baring

Is it over!?

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! 


 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...

My weigh-in is tomorrow morning at Grand River Hospital (GRH). Wish me luck!

Dr. T and Mr. E

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. 

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!

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.  

Mommy, Me, Pengy, Daddy

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.

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! 

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!

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!

My next followup appointment with Dr. T is in 6 MONTHS! I must be doing well!

Dr. T and Mr. E

Daycare Decision #1

Mommy got a call from one of the daycares on Tuesday (J.W Gerth YMCA) informing her that there was a spot for me starting in September. Mommy asked if they knew that I had a Gtube. Nope! and they've never heard of it before, What's that! Mommy was glad she didn't call it my PEGasaurous, they would have been even more confused.

The lady said that they had a girl that needs insulin shots and the parents just came in to show the staff how to do it. So it would be the same.... Yeah kinda not the same. *sigh* My stupid PEGasaurous!

It has just occurred to me that I haven't shown my fellow viewers what my tube looks like...12 months late but at least I remembered. So here it is in all it's glory!

PEGasaurous

Now, there's usually an attachment that goes on the end to attach the tube to a feeding pump and/syringes, the additional tube is added because it can easily be changed if and when the ports or tube snaps. We can't do it with the one you see because this part is always attached to me, inside my belly. If this one breaks, it's to the ER with me to get a new one put in and hopefully my stomach doesn't heal up.. which we are told happens in 2 hours! Which ER do you know moves quicker than 2 hours?

My parents took off the extra tube attachment, because they've been instructed to not use my tube for at least 1 more week, to see how I'm doing.They took it off because the extra tube makes my PEGasaurous basically the size of me and it just gets in the way.

Anyway back to daycare. She told mommy that they will hold my spot until Friday morning. Mommy told Daddy, and Daddy said, whatever you think. Hmmmm Mommy didn't like that too much, a big decision like this. So it came to this morning and Mommy had to make the call back, the decision she made was that I am not ready right now and to place me back on the wait list.

I heard Mommy crying, so I pretended to be asleep.

Strange Things are Afoot at Kidsability

Today was my first appointment at Kidsability in over a month. Unfortunately mommy got sidetracked with my therapy and forgot to take pictures.

Mommy updated Pam and Lori on my progression, they commented on how good I looked and that I looked much older! I think they are trying to get in my good graces before they torture me!

Lori was ecstatic that I am pointing! This apparently was going to be Mommy's homework! But I am already doing it! She was even more impressed that my first dabble in pointing was my mommy's "O" in her "Arizona" shirt and not a hole! Yay for being smart! She had me play with a basket of plastic fruit and did some high reaching with me. She said she didn't notice any shoulder hiking this week. Another win! She says she doesn't have any concerns with my fine motor skills and will continue to monitor me once a month still.

After playing, it was Pam's turn. She said that I got the cross-legged position down pat, and now it's time for me to move on already! She said it's funny because they usually spend so much time with other children trying to get them in this position and they are trying to get me out of it! That means lots of side sitting...... Oh brother!

She tried to get me into side sitting position to play with the pop up animals. However, I am too quick and would shoot my legs out! She can't fool me! Pam finally got me in a leg lock on my hands and knees where I was forced to play. After I did some standing at the learning table... my feet were turned out, so Pam corrected them and I just lost it! I started protesting, until they grabbed a slinky and distracted me. We moved on to mauling mommy. Apparently this is our homework, mommy isn't too happy about this but now I have proof that I am allowed to do it! I am supposed to grab her and go into side sitting to kneeling to standing. I can't wait!

Next it was the stairs... Pam was behind helping me and Mommy was at the top and was calling me to come to her. Can't she see that it's difficult! I am trying but my body just won't let me! I finally got to the top, and Pam let me look out the window at all the buses that were going by. I didn't do much here, so Pam tried to slide me down the ramp.. Oh I hate this feeling! I screamed and protested! I don't want to be here anymore! Take me home! Then it was time to go up! Sorry, I don't understand... You want me to get on my hands and knees and move them simultaneously in a forward propelling motion?!

This took 3 people. Pam was behind me supporting my knees, Lori had her hands behind my arms and mommy was doing her calling to me thing at the top of the ramp. OMG this is scary! I somehow made it up to the top, gave mommy hugs and then I was propelled down the ramp to do it all over again... Three times! At least with the ramp gravity isn't totally against me!

Mommy was given my homework for the next few weeks. (High reaching, ramp crawling, mommy mauling, sit to stands on my stool, side sit playing) I am getting exhausted just thinking about all those things!

Then the bad news came! Pam told us that Kidsability has had to do layoffs, and as she is on the bottom of the list in seniority, she's getting laid off at the end of June. 

There are only 2 physios at the Kitchener location and both Pam and the other lady are only part time!  So that leaves 1 physiotherapist! AND part time!... something doesn't seem right!

They don't know how everything is going to work just yet, but it's likely that I won't be getting physio over the summer while they are trying to work all of Pam's kids into slots.

Sucks! I really like Pam! Pam said that it's happened twice before to her and she got called back within a few months. Unfortunately money from the government stays the same but expenses go up. All the contract people are gone and a few of the therapist who were at the bottom of senority. She said sometimes they get a large donation and then they get called back until the money runs out again. It's incredibly sad as the wait list for kids to get into therapy is long and then having to get rid of therapists, holy smokes! Sad sad day! I have 2 more sessions with Pam until she is gone :(

What new tricks are next?

On May 17, I was at my Grandma's getting ready to go swimming when all of a sudden my mommy looks down at me AND.............

Yes folks, you see that correctly... I am isolating my fingers, meaning I am pointing at stuff! The photo is a little blurry because Mommy was so excited and had to capture photographic evidence to show my daddy before I stopped! However, my grandma was smart and gave me my Disney book and my Grandma shouted "Look! He's pointing all over the place!"

My drinking is going well so far. My parents haven't used my tube in just over a month. However, I was just taken to the clinic and I have lost about 13 oz in that month, which is almost a pound. Sooooo, we're not too sure if I'm doing perfect yet, as there were many variables within that month. I will be taken back in 2 weeks for my weigh in to make sure I haven't lost anymore. Please cross your fingers and toes for me that in 2 weeks I weigh a little more! My solids are still a fight, but apparently my feeding team says that it may not seem like it, but I am making great progress with my eating, and that it's almost unheard of at how fast I caught onto the liquid portion of feeding. Apparently it usually takes years for kids to wean off the tube. Right now I will only eat things that are hard and crunchy. Soda crackers, cheerios, infant puffs, popcorn, all bran bars, fries, and sometimes toast with margarine. I am still eating my cheddar cheese, and recently have added Mini-go (which is an infant yogurt) to my palate.

Now that we got that ugly necessity out of the way, I can talk about my newest trick! Sitting up!
Yes folks, I CAN use my arms to do something more than just wave hi/bye!
I was screaming one night for about 5 minutes and no one was coming to get me, so I screamed louder! Finally my dad came in in the dark and tried to pet my head back to sleep. Well he couldn't find my head! He turned on the light and yelled for my mommy to come into my room. My mom burst through the door thinking that something was wrong!  And there I was sitting in the middle of my crib crying my eyes out! They didn't know whether to laugh or cry with pride!

Days passed and I sat up in bed a few more times, but not when people were looking! So finally my mommy got smart and sat in my room with camera in hand:

It's my Party and I'll........

Happy Birthday to me!

In case you didn't have it marked on your calendars, I turned one on April 23rd, 2012.  Since that was a Monday, and in the height of tax season (a time during which I become the child of a single parent), my party was deferred until Saturday May 12th.  But oh what a party it was.

My mommy spent hours planning and toiling over what to do, how to decorate, what to get for food, where to hold it?  She's a super planner!  We ended up holding it at the Zehrs grocery store near our house in the upstairs community room.  Mommy said it was better to do it there since there was more room to move around and socialize.  The only catch was we had to buy all the food we used from Zehrs.  Guess they gotta make some money somehow :)

My twin Oso cakes

In preparation for the grand event, mommy wanted me to have a surprise cake just for me.  Not just any cake though, this was going to be a 3D, stand-up, Special Agent Oso Cake!  If you don't know who I'm talking about, he's the unique stuffed bear appearing on the Disney Jr. Channel who helps kids solve problems.  Anyway, she found a special bear tin and contracted daddy to do the icing! After 5 hours of hard work, they made two sweet Special Agent Oso bear cakes for the party.  While daddy was busy icing, mommy plugged away making dozens of cupcakes of different colours and flavors.  They worked well past midnight to get it all ready for my party!

As party-time approached, mommy and Grandma Philp started loading the car with food, decorations, photos, drinks, and posters we had printed.  Meanwhile, daddy was compiling music to listen to and accumulating all the digital photos we had of me onto his laptop to setup and display for all to see.  Mommy left to start setting up and I stayed home with Daddy.  Uncle Jan and uncle Jay showed up at our house to help daddy with the last few items and we were on our way to the party too.

We arrived just before our guests were slated to show when we realized that daddy left my feeding chair and diaper bag at home!?! OOPS...

Another trip and a few more minutes passed and daddy returned with all my gear.  The party began!

Lots of family and friends came out to wish me well.  I was passed around for plenty of photo ops got to show off my bum scooting abilities to lots of folks who hadn't seen me in awhile.  Everyone ate lots of food and I even sat nicely to take a sippy, despite all the activity happening around me!  I didn't get a lot of sleep before the party so for awhile there it was looking like my batteries were going to give out, but just THEN... I saw them... my OSO cakes!  They were AWESOME!  I was rejuvenated.

Everyone gathered round my cakes (which now also included a full size slab cake with my name on it) and sang me a nice group rendition of "happy birth".  Camera flashes were twinkling around me and smiles were lighting the scene when without warning, daddy grabbed my hand and shoved it in the cake!!!  "Woah! back off mister... you have your own paws to mess with."  I stopped, what to do.. make a fuss?  laugh it off? I chose the high road and played it cool, "oh daddy, you're such a card.  Just wait till you try to pick me up!"  I played with my cake and spread the mess all over the table.  It was fun and messy!

As the party died down, we sat around the table with a few of mommy's friends from work chatting while Grandma Reimer and Uncle John helped clean up the left-overs and pack up my presents.  We packed the car full of food a gifts and de-partied (haha, see what I did there?)

A huge thanks to those who could attend and for all the wonderful gifts! It was a real pleasure to see you all.

Until next time!