Elli Belly

Our sweet Elli has been having a rough patch for the last couple of months.  She has fits of screaming, arching her body, and lashing out (hitting or biting) anything nearby.  It seems to be caused by abdominal pain, but when she can't tell us, it's hard to really know.   It could be other pain, it could be sensory-processing issues, it could be behavioral-- it's so hard to figure it out when dealing with someone with such limited communication.  We have taken her in for some blood work and x-rays and are awaiting being seen by a GI specialist.   In the meantime, I am grateful for a few things.  First of all, Elli has THE BEST teachers and principal and staff we could ever hope for.  They keep in daily communication with us about how things are going at school.  They are patient when it is hard to be patient.  They love on her, but also work with her on behavioral issues.  They keep logs and try new things and are genuinely concerned for her.  (Ok, I'm not joking-- as I was typing this, I received a phone call from them to go over some things that happened today.)  It is such an amazing blessing to be able to send her to school and know that she will be loved and dealt with appropriately.  Secondly, I am so grateful for the way this house accommodates Elli-- especially when Elli is having a hard time.  She has the most amazing room, complete with a trampoline, a swing, a keyboard, and music that can be piped through speakers (otherwise she would break the CD player.)  When she is having a really hard time and we cannot do anything to help her, I can put her in this room-- which has a lock on the door-- and know she is safe.  She almost always calms down when she gets to her room.  I don't know if she is wanting to be alone or just likes her special space-- but it almost always does the trick when she is very upset.   Because of the intercom system, I can hear her and talk to her and know that she is ok.  Unless you've had a nine-year-old who can scream at the top of her lungs and who you sometimes cannot reason with and who can break things and climb on things and wreak havoc and who cannot see and therefore can get hurt easily, you probably cannot appreciate how much this room has changed our lives.  Don't get me wrong-- Elli does not spend all of her time in her room.  We usually have her upstairs with us or in the room with the piano-- but when we need to, having a safe, happy place to put her and not have to worry about her hurting herself or others has been LIFE CHANGING.  We are so grateful.

I love this girl with my whole heart.  She is an angel in our family and I don't know what we would ever do without her.  I am so grateful for all of those who take care of her and are a part of her life.  Hang in there, Elli!  We love you!

 One time I told Elli to smile for a picture and realized that maybe she just didn't know what a smile was.  So I tried to turn her cheeks up with my fingers.  Now if I tell her to smile, she puts her fingers on her cheeks.  Ha!

Christianne