DAY OF LIFE 120

Mornings are HARD...

I guess some babies cry and scream at night, but I do it in the morning..my mommy thinks I am in pain..then when I am upset, my airway sounds like air is having a hard time getting through, so I make a sound when I breathe..

My cry is getting a "tiny bit" louder, but it's still very soft and I can't be heard unless you are in the same room with me, so I am rarely left by myself..I am a full time job - - - around the clock.  (My parents friend gave them a monitor for me, but it's not working right now, so mommy and daddy are trying to fix it.)

The reason my mommy thinks I am in pain is because I have a certain cry that is a "pain" cry..it is the same cry that I had when I was in the hospital and I was getting a poke or a tube.

I am hooked up to my feeding machine 23 hours a day (see picture) and I also have a "murphy vent" (see picture) that allows my stomach to "vent" because I can't burp very easily since my Nissen surgery and I need to get the air out some way.

As you can see, my set-up is pretty limited so I can't be moved or held very easily...

Most of my day is spent in our game room with me laying on my "boppy" pillow..

My family tries to entertain me, read to me, sing to me and show me things, but I'm just very fussy...

Our goal this week is to increase my food so that I am NOT on my feeding tube all day long..the sooner I can "un-hook" from this machine, the better it will be for my development...

One thing at a time...one thing at a time..

BUT...

My quality of life is way better here at home than it ever was in the hospital, and we are all very grateful for that!!