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!