Saturday and Sunday, September 16th and 17th

Hey there,

The nice and relaxing weekend hoped for wasn't to be true as Tori was in constant pain and crying almost non-stop during her awake times... Friday night we tried about everything in the medication arsenal to get her to sleep - Lortab, xanax, valium, zanaflex, dilaudid, inderal, ambien... She was untouchable for quite some time unfortunately and her SATs also destabilized to the point where we had to give her oxygen again. Tori also vomited often so we started giving her pedialyte. We honestly haven't had a time like this for almost a year and quite frankly it sucks...

Seeing in her in so much pain and discomfort is so painful and it is just about unbearable... We believe it is part of the baclofen withdrawal but we have hesitated in taking her to the PCMC because she doesn't maintain a fever and her blood oxygen level has improved. Besides that we dread having to wait in the PCMC ER for anywhere from 4 to 10 hours... Sorry PCMC but your ER just isn't our favorite place to be.

Tori has improved somewhat Sunday afternoon thankfully as she was awake for some time without crying. She is still very, very tight and we have been giving her additional baclofen as well. Hopefully the worst is over and tomorrow she will be feeling much better. She definitely wanted company today and I spent some time laying with her in bed. She was completed awake and calm during that time and during the time Maria spent in her room with her.

Needless to say but Tori didn't get out much this weekend... We had a neighborhood barbecue that she didn't make as well. But again, it appears she is starting to recover so we will watch her closely tomorrow.

I always enjoy updating everyone on positive news much more but this week was downright trying... Please hope and pray for a better upcoming week for Tori.

Thanks,

-Tim