Praise the lord and pass the potatoes my son does NOT have Infantile Spasms. In true Booth fashion we found out today that he is just a Spaz...not a Spasm!
What an incredible moment.
I spent last night working through the reality of the disease in my head. I found some peace with it, not totally, but I was heading there. I spent a lot of time praying that my son would find peace with the way his life developed.
This morning my husband, mom, dad and I headed to Children's Mercy with the thought that our lives would be completely different when we returned home. I actually took a moment before I walked out of the door just to breath the last few moments of the "old" life in to my lungs. The test wasn't that bad considering they have to glue 28 electrodes to the head of a wiggling 10 month old who has been rudely awakened at 4:00 in the morning and not allowed to go back to sleep. Our EEG tech was awesome. (Her name was Amy in case any of you end up in EEG some day!)
I was standing at the end of a long hallway when I say Dr. LePicheon come through the door. I swear it took an hour for him to get to us. With a grin he said, "I have some wonderful news..." And my heart stopped, in a good way. He explained that the marker for Infantile Spasms was not present. That the head drops were caught on the EEG and there actually wasn't any electrical changes on the EEG! AMAZING!
I am going to bask in the good news for a while. The reality is that the journey we are on is far from over. In all actuality Truman might be dropping his head because he doesn't have the muscle strength to keep his head up. We are also now headed into surgery for a muscle biopsy and to repair his umbilical hernia. The genetics results are still weeks away...but WHO CARES TODAY!!!
I'm taking the night off from thinking about the "what-ifs" and snuggling up with my little Spaz.