What's been going on with Ethan?

I thought I would take a few moments to update my fellow readers on my progress before there are too many things to report!

As of today:
20 days: no Alpha Lipoic Acid
13 days: Carnitine went down to twice a day from 4 times daily
6 days: No Vitamin E
My CoQ10 gets D/C'd on Monday

I will be left on Creatine, Vitamin C, Omeprazole, Domperidone and Carnitine
My Carnitine levels will be checked mid December to see if I can be rid of the med, however a lot of metabolic/mitochondrial disorders have low carnitine levels, and Dr. T just wants to be sure that my levels are normal before I am taken off.

Since the last post I have learned to stand with support for a few minutes.  This makes me so happy as I am frequently heard chatting up a storm from this position.  I still don't make any consonant sounds, but the sounds now resemble language, not ear piercing squeals and grunts anymore. I can sit for hours playing with my toys... and am happy as long as someone is playing with me. To my mommy's dismay I have started to chew on my feet.  I have been known to roll from my back to tummy, but I don't do this very often and it's still very difficult for me to lift my head up from the tummy position. Often only for seconds at a time. Mommy was told to exercise tough love, but I make it very difficult for her. We have been working on my transitions, which I did not like, but am slowly getting used to the new positions.

Mommy relentlessly argued to have my total calories decreased before my diagnosis came in (so I have been eating less for about a month). Since she did this, I am more eager to take rice cereal orally. I had only a few days mixed in where it wasn't interesting enough. I am up to about 20mls of rice cereal taken orally before I start to get grumpy. My swallow therapist was impressed with me clinically, so the next step is to try a different grain cereal (like oat, barley or wheat).

My pediatrician said that she would be challenging me more on my oral skills. So my daddy took this to the extreme and introduced me to "The Sippy Cup". Do not tell my therapist! I'm just lucky that daddy told mommy! Mommy has allowed this for the time being....

Grandma and Mommy have been taking me to the Kidsability pool Wednesday nights (this also gives daddy a night off to himself!).
I have been four times. I started off really cautiously, splashing the top of the water only a few times, my legs were so stiff and I didn't want anyone to see that I was having fun, so I would quickly cover up my smile. However last time I was having the time of my life! Squealing and laughing up a storm! Kicking and splashing with my arms and legs! Grandma is trying to get me to relax on my back, which makes mommy tense with fear! I still do not know what to think about floating on my back....

The last thing to report is what came out of my visit with my pediatrician.  Daddy gets to PURPOSELY sleep through my overnight feeding!  My pediatrician says that now we know that I don't have some obscure glucose disorder and that I am now big enough to NOT eat overnight!  Tonight will be my third night not eating!  My mommy finishes feeding me at 11:30pm and my daddy starts feeding me at 6am!
Of course I go to bed around 8-8:30pm.

In the following weeks, I will have a second Kidsability assessment, carnitine levels, progression to a new cereal, and a photoshoot with Emerson!