Friday, June 26, 2009

Crushed

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.

6 comments:

Krissy said...

Oh I'm so sorry! That's awful! I really hope that someone (whomever that may be) gets it together and figures things out quick. There is no good reason for your little sweetheart to be in so much constant pain! You guys are (as always) in my prayers and in my heart. I hope you get some answers...and soon.

((Hugs))

Heather said...

Oh Tera...I mean seriously?I know how disappointed you are because I know how encouraged you were and hopeful you were when you arrived back home.I still think you should email or call them,just to get it off your chest.As for the day,sounds crappy all around and for that I am sorry.Really,really sorry.I hope the weekend brings improvement and as always Reagan is in my prayers.Always.

blogzilly said...

There is not a lot that feels more like a punch in the face than believing one thing as you leave the hospital only to have it changed when you get back. I mean, why even dangle the carrot at all to parents like that? Seems very irresponsible...very strange.

Sorry about that and the ticket debacle. What a crap end to a crap day. Hopefully dinner went OK and you could take your minds off it long enough to enjoy some aspect of it.

jocalyn said...

Unbelievable. Simply unbelievable. I am so sorry. You all continue to be in our prayers. I hope your weekend gets better.

But seriously, this bad luck has to end soon...right? ugh.

Tiffany Lockette said...

I am so very sorry. Your luck has got to turn around soon right. I wish with all my heart these Doctors could figure out what is wrong with Reagan. no one should have to suffer like she is suffering and how much longer can you keep all of this up? I know you have to be just utterly exhausted. I am so sorry that you were mislead. I will continue to pray for Reagan and for you to keep the faith that relief and answers are coming soon.

Rhea said...

I totally agree with Heather - you need to call or email and let them know how you are feeling and tell them that they have really disappointed you and Reagan! Seriously you are an amazing Mom - keep fighting for that sweet little girl. I know that you will find the answers that you are looking for!