DAY OF LIFE 113

Today was a little rough...

I am STILL refluxing pretty badly..even though I am keeping it down.

My mommy and daddy are feeling a little overwhelmed today because for the first time, they have to deal with all my "tubes" and "stuff" without Nurses.

My mommy didn't sleep last night because I am so noisy and she is very "in tune" with me.

I "sound" like I have a built in "squeaky" toy and I am "fighting" to get air in.

Of course I don't have a squeaky toy in me..So, here is what it really is..when I reflux, it comes "UP" still and my throat is still pretty swollen so it sounds like I am "fighting" to get air in.

I have learned "how" to get enough air in through this swelling .  It's also pretty "positional" too, so if I get my head back far enough then I can "open" my airway up and get more air in. Or if they put me on a BOPPY pillow, that helps too sometimes.

When I do this, I get "arched" back as far as I can and it looks pretty "uncomfortable" but it's "how" I have learned to deal with this.  I guess you do what you have to, huh?

My brother asked my mommy today if I was "really" ready to come home because I sound like I am "struggling" so badly AND I keep refluxing.  He is worried since he hasn't been around me a lot yet, but I am okay..this is just my life right now and I have fought so hard to keep it, a little reflux isn't going to keep me down.

My mommy did have a crying meltdown (probably lack of sleep AND not to mention that I'm a full time job with all my medical "stuff")..SO...THANK GOODNESS Nana is here to hug her and tell her to take it ONE DAY AT A TIME. (Very good advice.)

My mommy and daddy know how I "sound" and that I "still" reflux, but that's just the way it is for me right now BUT they HAD to get me OUT OF THAT hospital...they just had to.

Being home is a HUGE life adjustment for my family because of all my medical "stuff," BUT I am TOTALLY worth it!! 

They are so thankful for all their friends and family AND FOR Nana too!!

PS:  A HUGE THANK YOU to my mommy's friend who loaned her a TON of stuff for me.  We sure appreciate you!!