Lately and ever so slowly escalating, Sarah's desire to "want to take a bite" of ANYTHING, whether it be her sippy cup with water, a spoonful of food or even teeth brushing, has become quite a regression. She was doing so amazing before her shunt surgery. So many things seemed to have changed in the last 3 months.

Bath time is literally a nightmare for her. She will scream and cry, but yet still step in the tub. She wont sit down and will cry as if she knows something painful is about to happen. Last bath on Saturday, she did just that and then hugged me for a very long time. Crying with full blown tears. I finally pulled her away and explained to her that she needed to be bathed and I promised it would be super fast. With the rinsing and washing of her hair, then the final rinse... she cried like it was excruciating. As soon as the final rinse was done, I expected her to fly out of the tub. On the contrary... she decided to sit down and fill the tub with water and played for the next 30 minutes. Happy as a clam.

Some may think that this is behavior and some will just excuse it as so and want to move on. I, however, her mom, the person that knows her best, I refuse to excuse it and just brush it off so fast  and will explore every avenue until I have some kind of an answer. With her being non verbal, I would die if she was going thru some kind of pain and did not try to find out what it is and I would be a terrible mom if I did not investigate it the best I can.

She is exhibiting this kind of behavior at school as well. Crying real tears. Crying is not a part of her pattern.Yes, if she does not want to do something... she will get mad and fight it... but NEVER cry like she has.  She is extremely stubborn and would throw a temper tantrum that to cry like she has been.

Here is a before video of Sarah cooperating during a feeding session and there is one a few months after. Mind you we have tried to work with her in the middle of these sessions. She was in the hospital back in June for an emergency shunt replacement surgery because it had become so clogged. Then stayed the next 7 days because she had a virus. This was a HUGE set back for her.

Now here is a video of her having an absolute melt down. We, her parents, do all we can to work with her every day. Even keeping her sippy cup out and allowing her to want it. We present it to her as often as possible, but we are at a loss. Not sure why she is so upset like she is.

Just wanted to post this as soon as I could just in case ANYONE would be able to tell me what they see that I am not seeing.

Victoria