DAY OF LIFE 139

Today is Friday...

My brother and sister were "off" from school today and they spent quite a bit of time with me.

I like my new pak & play because I can be "wheeled" to be with my family in every room in the house very easily with my feeding machine..

My mommy had a meeting at work today and then her and my Nana went to the Quilt Guild & saw some beautiful quilts made by very talented people...

My daddy hung out with me and I like that..

My brother and sister got to dye eggs tonight too & they had fun with my mommy and Nana and daddy went to "scout" for turkey's...

I am still pretty uncomfortable..

I cried and squirmed a lot today, so my mommy called the bigger hospital where I had my surgeries & they suggested that she withdraw "1 cc" of water out of my g-tube (my mommy had put 5 cc's in last night after it started to leak formula, and "5 cc's" may have made my belly too "full." They said that that the ONE extra cc of pressure might be causing me some pain in my belly.  It's hard to know if this is why I am so cranky, but it's worth a shot taking some water out to see if this helped.  It's also hard to believe that "1 cc" of water could make that much of a difference.)

Taking that "small" amount out did seem to help, but only a little.  I act like I am in pain most times I am awake. I arch back as far as I can go and I get as "stiff" as a board.  The only thing that makes me get "out" of this extension position is a binky.

My family is very thankful that I have "something" that can soothe me.

A few other observations from my family are that I am still looking "up" quite a bit, I startle very easily if something touches my eye(s) and/or mouth & I have an "interesting" jerking motion like I am trying to jump "up" out of my bed - but then when my family tries to "sit" me up, I cry & "extend" my body backwards as far as I can until they lay me back down and will "miss" a couple breath's and then I act like I am choking on my own saliva when I start breathing again.

My mommy "questions" if what she is "seeing" with me is indeed something to be concerned about OR if she is just hyper-sensitive to my behavior because she spent so much time in the hospital with me and there has been so much "concern" and "uncertainty" with me since I was born.

She second guess' herself everyday..

I am "writing my own story" for sure AND we are all so thankful that I am HOME and able to write this magnificent story!!

Keeping the faith...