Amazing day

Today was truly awesome!! Very productive. Thanks to the help of a really stand up guy, all of the social media pages are up and running. Lorelei’s blood work came back and it was good. I guess people can just go without eating after all…hmmm. And I got to talk with someone I would now consider a friend. Chris is a member of Philadelphia’s NORML charter and he is coming out for me and all the parents at Team MMJ (Facebook page) in a huge way! We at Team MMJ are hosting a rally at the capitol in Harrisburg on Nov. 18th and he has agreed to speak. This is a man who really knows his stuff and will be a huge asset to our cause.

Thanks to all that come and check out Legalize for Lorelei! Be sure to follow this page to stay up to date with everything Lorelei and the fight to legalize medical marijuana in Pennsylvania. U can also follow me on Facebook and Twitter, the links are on the right hand side of the page….just look over….yup…right there, now just click and like my Facebook page and follow me on Twitter 🙂 Awesome!

A feeding tube?!

Lorelei was always a great eater when she was a baby and up until she was diagnosed and put on medication. After that she started getting picky. We were told by the doc that her meds can cause food to taste metallic and she might just get used to it so we left it alone and continued to encourage her to eat. Over the last 4 years her eating habits have grown increasingly more difficult to manage. Food is more often than not repulsive to her. It has to be exactly what she wants at that moment or she won’t eat it and often she’s not in the mood for anything or claims to not be hungry at all. It has to be the right food, with the right texture, temperature, smell, color, size, and the list goes on. Most recently this has gotten so bad that I am concerned about her health. She refuses to eat almost at all and has lost about 4 pounds!

It has been suggested that we try an eating clinic. Eating clinics differ in approach. Some use a reward system, rewarding children for eating where others use force feeding which honestly doesn’t seem like a good option for us. Someone ramming food down Lorelei’s throat just isn’t appealing to me. The one we looked at in Philadelphia would require us to come eight hours a day, five days a week for a minimum of four weeks! As we live about an hour and a half (not counting city traffic) away, this doesn’t seem like a viable option either, not to mention she would have to miss at least a month of school which for a child that’s already behind would only widen the gap.

We took a trip to the pediatrician last night, like I said, I’m starting to become concerned about her health. With Lorelei’s weight loss the doc is also becoming concerned. Lorelei refuses to eat a vitamin so we must also worry about her getting all of her nutrients. Without an eating clinic as an option there really isn’t much we can do except to continue encouraging her to eat. Them the doc said if something doesn’t change soon that a G-tube (feeding tube) may be in her future! This is NOT something that we want for Lorelei but we may not have a choice. The doc sent her for some blood work to check her blood count, a nutrition panel, and to check her liver values. I’m keeping my fingers crossed that it comes back normal. Now we wait……

Meeting great people!

Last night before the forum I had the pleasure of meeting a family at their home. Lolly and Mark are part of a group of parents on Facebook called Team MMJ and they have a precious 5 year old daughter named Anna. While we were eating dinner I was given yet another reason to fight for the legalization of medical marijuana (MMJ). As we all sat there eating and talking, Anna’s head slammed forward and hit the table….hard! Her awesome uncle immediately placed his arm on the table to protect her head and comforted Anna as she continued to seize. Upwards of 15 times Anna’s head jolted forward violently. Everyone at the table, though concerned, continued to eat their dinner and converse, even her siblings. They knew her uncle had everything under control. This is a testament how families like ours have become so accustomed to these types of events happening EVERY SINGLE DAY! Anna has an extremely supportive and loving family, she is a lucky girl. Her parents are right there with me and hundreds of parents all over Pa that are fighting for MMJ! I was so happy to have connected with this family and I’m sure we will be friends for years to come.

Marijuana forum in Harrisburg was awesome!

I’m so glad I went the the open mic forum last night. It was not the committee members as I originally thought but there was a panel of politicians, a coroner, and a drug rehabilitation specialist and it was awesome! I got to make my case to the panel, hear views from both sides and I made some really great connections. The news coverage was great too. Here’s a link to a story that Fox 43 did from last night. What a fantastic night!

http://fox43.com/2013/09/30/lawmakers-say-medicinal-marijuana-is-not-a-priority/#axzz2gU2td3nj