Sorry for not updating yesterday but it was a busy day. The reason I had to bring Avery into to see the team was more for safety. Typically the team gives med orders over the phone but when things get bad like they were on Monday, they need to physically see him in order to presribe something else. It was also good b/c they got to see some of Avery's discomfort and that was minor in comparison but they got the picture. We discussed some of this being likely the progression of his illness. Which I already knew. Let's face it, this kid is on ALOT of strong meds to no avail. So they know that we may have to keep changing things up for his comfort b/c obviously that is a number one priority.

For now, they are going to keep him on the baclofen and also adding back the valium 3x a day. This may temporarily depress his respiratory system but I am willing to take the risk as we have become so much better at handling him respiratory wise. It is worth the comfort. The team was also open to talking to any other drs. who deal with severe dystonia and muscle spasms/pain management which made me feel better. I just wanted to hear out loud that they were not just going to sit back and let Avery suffer and that is obviously not the case. They are so very caring and are constantly hugging and kissing him. So now we hang in there and hope that the change helps him. It will take a few days before we see a difference.

A big plus was they thought he looked more filled out (weight gain) and just looked healthier. So we are on the right path but we have to get this pain under control.

Thanks for all the prayers and thinking of my little man.