Friday, June 26, 2009
I cannot even begin to describe the frustration and disappointment I'm feeling right now. I feel like our whole trip to Detroit was for not. I got an email today from the doctor I formerly respected basically denying everything they told us about the genetic testing they were going to pursue for Reagan. Telling me it costs $6000 per person (which it doesn't, they told us while we were there that it had just been lowered to $3000 per person) and that they don't have the funding to do the testing that's required on the three of us. I don't know why the change of events, maybe they forgot everything they told us, maybe they misspoke, maybe we misheard them (unlikely), maybe they thought we'd forget....I don't know. But right now I feel like every bit of hope I had been given, has been punched right out of me. I'm crushed. Totally crushed. I want to email him back and call him out on the lies he's trying to feed me, but I can't, can I? I'm just miserable about this. Miserable. Maybe Reagan could sense this coming because she's been crying all afternoon. She was in an awesome mood this morning (despite having a lot of seizures). So happy, grinning from ear to ear. Very alert with big smiling eyes (I wish I would have taken a picture). She had feeding therapy and she made it through the whole thing and then she started getting fussy right as we were leaving. By the time we got in the car she was full out screaming, which she continued to do nonstop all afternoon. She did finally have a dirty diaper, which usually helps, but the pain continued. She never really took a real nap. She'd cry herself to sleep but it wouldn't last for long, she'd either wake up as I tried to lay her down or she'd wake up from a seizure, either way screaming. Ugh. That sure makes for a long day. Thankfully my mom agreed to come over and watch her while Mike and I got away for a rare night out together to go to an Astros game. We drove all the way to the ballpark and were about to park our car when we realized, we left the tickets back at home. Just our luck. No really. We have some really rotten luck. We headed back home and decided to just go eat dinner and then head home. Reagan was asleep in Grandma's arms when we got there. Poor girl, she's had a rough day. And it all started out so well. Please keep her in your prayers.