Tubaluck

My D50 has been turned down to 4.5 and my glucose levels are still stable (just scored a 5.2).  Nurse Debbie just told me that I am down to 1 blood gas test a day, however I still need to be on frequent glucose blood checks to monitor my sugar.

I mentioned in my last update that I had been puke free... that changed this morning as a few of my meds were given through my feed tube all at once... which I hate, so I puked, conveniently when Dr. Potter (My new on call Metabolic Dr.) was here to see me and mentioned that I had been doing well with no pukes.  *sigh*... I just hate those meds.

I got lots of presents today from Heather and Sean!  A few new outfits, a couple of hats and some slippers!  I even got a new stuffy named Tubaluck, I like him, he's very colourful, and he sits as my guardian on top of my bed.

I just had a long nap after my visitors left and now I am awake and a little fussy, just wanting some cuddles.

Urgent Update:

I just pooped on mommy's shirt!

Also my roommate Jordan and his mother just gave me a token of an angel that they were given in 2007 when they were in the very same bed as we are now.  Jordan was then told that he would not live as he was born without some of the important abdominal muscles that we all take for granted.  It is now 4 years since then and Jordan is back and healing following a surgery that has helped to correct the problem.  The token is another wonderful example of the love and support we are being blessed with here.

Thank you Jordan.

Doctor Turnapulski was also here to discuss the testing we did last week.  He has ruled out something called the Sco2 disorder that has no survival rate.  He is continuing to look at the mitochondrial disorders as those are the most likely at this stage.  More "good" news!

Mommy has changed her shirt and is cleaning me up.... whoops, just peed on her too. Sorry mom... anyway, typing and being cleaned don't go together. 

Ethan out!