Sad Step Up

Yesterday was our annual Step Up for Down Syndrome. We look forward to this event every year. We all usually have so much fun. This time it was not our dream day. I am suffering from laryngitis and I'm not feeling all that great, that's just a small whammy against us. Jarika had to work so she was MIA and Cooper is with his church youth choir in Nashville (he's having a great time, said he played Frisbee in Andrew Jackson's backyard yesterday!) so we were down to just two kids which is very weird for us!

As you know Addy has been suffering from some sort of intestinal issue for five weeks now. Yes five weeks. Her bottom is more than raw and she is miserable. Yesterday was one of the worst I have seen her. I was hoping she would be doing pretty well. The doctor had us do 24 hours of Pedialyte on Friday and she barely had any stool that day so we decided to mix her formula with Pedialyte for yesterday to gradually put it back into her system.  Well, she had a pretty big stool yesterday morning before any formula so I wasn't sure if it would work. (It didn't). She wasn't herself in the morning. Just wanted to lay on her side and have Play with me Sesame on. If we moved her or tried to change the channel she began crying. Addy really doesn't cry. Ever. She cries silently at that so she rarely makes a peep when she cries.

We went on to Step Up and let her stay asleep and we drove around for awhile hoping she would be happier when she woke up. She wasn't.  She didn't smile at anyone, wave at anyone, want to dance or sing, nothing. Very atypical of her. She loves music and she didn't even want to sing along or dance with everyone which is out of character for her. I tried the ball pit to no avail, we tried interacting with the Chik Fil A Cow (she loves characters), and we just got tears.
 
We started watching the talent show and they were having problems with the sound system and that just sent her over the edge. I took her out for awhile, Scott took her out for awhile and we just couldn't calm her down. She was actually crying out-loud :( She was drawing her little legs up like her belly hurt so we gave her a small feeding with some Tylenol and after about 20 minutes she was calm enough to hang on to her nurse, Alicia's phone and watched Elmo without distress.

We did out walk (we didn't even attempt to have her walk) and she just stared around and didn't wave at a soul :( she did give Louie Bird a half attempt at a high five though :)
 
We were hoping that once we got seated she would improve but she just didn't :( Jake was playing musical chairs during the fifth inning so we knew we wanted to at least stay for that so he could play. He was really looking forward to it :) He didn't win but he had fun. Our good buddy TJ won though!

Addy was miserable and we packed it up and headed home. I gave her a feeding before we left and she did seem to improve some on the way home. Thank goodness for Jack Hartmann, he got her to sing a bit.

She watched some Sesame Street before going to bed and is still asleep now. I'm hoping that today is a much better day for her. I am so tired of seeing her hurting. I am so frustrated and my heart is breaking for her. I can't imagine the pain she is in :( I was supposed to get a call from St. Louis on Friday (but I didn't) to come in this week for a rectal biopsy and upper GI to see if she does indeed have Hirschsprungs or some other problem. She isn't absorbing her feeds correctly either. Usually before a feeding we burp her tube and get tons of air out. For the past few weeks she's had at least 60cc of reserve in her belly which is not normal at all.  Please pray for my sweet girl, I hate seeing her this way and want her to get better. Five weeks of this has been entirely too long!