and I'm mentally exhausted by it but here is an update.
Met with Senator Clark Jolley to discuss the lack of coverage by insurance companies on amino acid-based elemental formulas. Great meeting. Like the man. He WAS LATE to our appointment!! Like 30 minutes late!!! But I forgave him quickly :) when he said, "Let me research this and I'll get back to you in 2 weeks. Sounds doable."
The next day one of my "lobbyists" told me that because my meeting had gone so well, he had set up a round table discussion with Jolley and some health care professionals to discuss how effective these formulas are for other patients (not just kids with severe food allergies) and did I want to come? Of course I want to come!! When is it? Thursday. Um....ok...I'll make it work.
Wednesday, day before meeting, 5:00pm, we are on the way out the door to go eat at OC. "Lobbyist" calls me to say that he has been pulled "off the case from the headquarters in Washington." Huh? "I'm not a registered lobbyist." Oh. What does that mean? "I can't speak to a senator or representative on behalf of my company. I can't encourage you or discourage you from attending the meeting. I can't encourage or discourage any HCP (health-care professionals) from doing that either. I won't be in attendance tomorrow. I'm so sorry. And off the record - go get them!" After I hung up, I sat down and cried.
My dietician friend call shortly after my crying spell and says she's still going and she will be prepared to talk in place of lobbyists. Previously we thought we would just go and look pretty and listen to all the doctors and nurses and dieticians talk. I felt better.
Thursday: drive to pick up 80 year old doctor and take her to the capitol. Meet 6 other HCP women and we squeeze into Senator Jolley's office and they begin talking. Senator Jolley starts talking code: PCCP and Title 36 and other stuff and I nod along like I totally get when he's talking about. At the end of the meeting he asks me to get in touch with 2 Senate staffers.
Monday: I call 1 Senate staffer. She tells me that if he asked me to call her then we are WRITING A BILL!!!! December 9th is our due date.
In most recent news....Representative Grau called to tell me that my insurance company would be denying our appeal to insurance companies first denial. So we will begin the process, I think, of a "2nd level appeal".
In other news: #1 Senate staffer has told me she will be letting #2 Senate staffer do the writing of this bill (with my finishing touches of course) because #2 deals with insurance and #1 deals with health and then "IF Senator Jolley decides to sponsor the bill, we will move forward in January." What? When did we move to IF?
Believe me when I say that I have political highs and lows about every Monday/Wednesday/Friday since I started this whole thing. Some days I really want to quit and go back to my regular life. Some days I really feel like fighting.
Right now I feel really glad that we can make sacrifices to afford this $$$ amino acid-based elemental formula and I still fervently pray that Jackson will grow out of all food allergies. He gets retested in February!! :) He DID lose weight again, but we are staying the course on his current eating plan with dietician at Children's in Dallas. He had a really sick month in October so we are chalking it up to that and moving on.
When feeling discouraged about the political process of getting a bill going or having my appeal denied, I try to remind myself that Moses got a NO 9 times from Pharoah before he got a YES! And then after that YES, Moses was chased. And God did provide.
And when I was feeling like quitting this whole crazy thing on Thursday, I got an email from a person I made contact with regarding supporting my bill. She and her group got the "epipen bill" written for the state of Oklahoma (I did not even know we had an epipen bill). Anyway, I'm meeting with her next Wednesday. She said it was quite a process to get it done. I told her I that I felt "processed" already. But God knew I needed a little push to keep going and so he gifted me with my new friend Cami - the epipen bill author. God does provide.
Now you are updated on my political life. I absolutely know that I am gifted in being a teacher and I could never and should never go into politics. I've said it. Now someone hold me to that when I get another crazy idea.
Collin was super excited to be cast at "Little Banjo" in this performance.
Here is the makeup room. Collin did NOT like putting on makeup but said, "It's just one of things you HAVE to do when you are an actor." That made me smile.
He especially hated the eye liner. And it was so difficult to remove that he kinda had an Adam Lambert look to him at church Sunday morning.
Once the kids were costumed and makeuped they went to the green room. Here they played some warm-up games and group games until it was time for the show.
All practices were closed so we didn't see any of them. Collin broke the news that Snow White would be kissing him on the way home from practice one day. He said, "Now Mom, don't get mad. But I am going to get a kiss in this play. And it says it right in the script so please don't go talk to Ms. Susan. Just let Snow White kiss me." I said, "Where does she kiss you?" Collin said, "On my head." I said, "Well, let me think about it. (Pause and smile) Ok. This ONE time will be fine."
Little Banjo
He loved getting to sign autographs! He wrote his first name and some music notes under it - because he sang all his lines. 
Katie made a banjo at school on Friday and wrote on it "Little Bango" and wanted to take it to the show and play it in the audience. Sadly, she did not get her wish.
My nephew Chandler, my sister Serena, and my mom and dad AKA Grammy and Poppa. Matt stayed at home this night and watched Jackson and Greyson.
Between shows on Saturday the cast met at Steak and Shake and ate an early dinner. I've never enjoyed that restaurant more. Collin kept popping over the big kids table to talk to the evil queen. I asked him later if he thought that he might have a crush on Katie - the evil queen. He said, "No mom. She's my really good friend. I've known her since I was like 5." Smile.
Collin's fantastic 3rd grade teacher (who is also our next door neighbor) came to the show. YAY!
Matt's parents AKA Pops and Jarre came up for the big show too.
And my friend Sarah and her son went on standby for tickets for the last show and got it! Collin was thrilled that a friend got to see his show! And this photo is proof as to why my child got to play a dwarf!
Collin had fun at the cast party. They ate pizza from Cheezies and had cupcakes that were iced like apples from I don't know where but a fancy cupcake place and root beer and chips.
They all watched the movie of their performance. It was fun for me to watch them watch their show. Sometimes they would all break into song on Collin's lines and then they would stand up and do one of the group dances. And the general commentary was funny to listen to. 
Then they went down to the theatre and watched....
"The Joe" juggle. Yes, my friends, this 12 year old boy juggles very sharp sword like thingys. "The Joe" ran lights and sound for the show.
Then they played games. Here is where you suck up a lima bean on a straw and take it across the room.
And then they had to thread yard on a spoon through everyone's clothes. That was interesting! The little boys in the show had NO idea that maybe they shouldn't help their friends that were girls get the spoon through their shirts and pants. Yes. Very interesting.
And then they played Honey, If You Love Me, Please Smile. Collin tried to get his director Ms. Susan to smile. She didn't break.
