Diagnosis Day

On this day, October 27th, four years ago, Lorelei was diagnosed with epilepsy. Our lives would never be the same. Every day since then we’ve prayed for an answer. Every day since then we’ve watched treatment after treatment fail. Every day since then we’ve watched our little Lorelei fade away a little more.

We have been given a glimmer of hope in the form of medical cannabis. Although we face an unbelievably long road, we are still optimistic. We see what medical cannabis is doing for children in other states and we will fight every day until we get it.

We want our baby back. We want her NOT to be plagued by so many seizures every day. We want to see her smile, laugh and play. We want her not to be repulsed by food. We want her to feel comfortable in her own skin. We want her not to cry so many times every day. We want her to learn more easily, be able to talk to other kids at school, interact with her cousins.

There are so many things that we want for Lorelei’s future. Most of all we want her to be happy.

Please be a part of her story. Call your senators and state reps and tell them you support medical cannabis for Pa. Educate everyone you know about medical cannabis and how much it can benefit children like Lorelei and thousands of others across the state. So few people know that for children like Lorelei, they would never smoke cannabis but rather take it orally in the form of an oil. So few people know that they would never get high due to some strains being bred to have almost no THC.

Please “Like” her page on Facebook at http://www.Facebook.com/legalizeforlorelei. Please sign the petitions urging Gov. Tom Corbett and Senator Pat Vance to move on medical cannabis for Pa. The links for those can be found on this site.

Lastly, please donate to Lorelei’s fund if you can. All of the money goes to Lorelei for her care. Every single dollar counts.

Thank you all for your continued support. Continue to spread Lorelei’s story. You can help make a difference in her life.

Love and hugs to all

Dana & Jason (Mommy & Daddy)

Big day for Lorelei

Good morning to all on this frigid, frosty day. I hope it warms up. I am not a cold weather person and neither is Lorelei.

On Wednesday, I spent the day at our capitol building in Harrisburg having meetings with state representatives and senators. I was able to explain, in person, why we need to legalize medical cannabis in Pa. The surprising part for me was that they didn’t even know about the high CBD/low THC strains of the cannabis plant. Furthermore, they had no idea that it could be made into an edible form that wouldn’t get people high. These people are committee members on the medical cannabis bills! They have chosen not to educate themselves on an issue that they have been assigned to, yet half of the people I met with are totally against legalization. How can someone who has no information on a subject make a decision one way or the other? Fortunately two of the people I met with are entirely on board for the medical aspect and all the rest of them would be in favor if there was a bill that specified the sole use of high CBD/low THC strains. That limits very much who it can help, but it’s a start. Progress is progress. I am already working on that angle.

Today is going to be quite a day for Lorelei. We have already been to the blood lab this morning. Lorelei LOVES having her blood drawn (I know, kinda weird). It could be the complete opposite so I’m grateful for her weirdness. This will be to check for inflammatory markers, Crohn’s disease, Celiac disease, inflammatory bowel disease and other intestinal related problems. Lorelei was having belly pains over the last couple of weeks. I’m pretty sure it has to do with one of her medications but we have to rule out the other stuff.

On a lighter note, Lorelei will be participating in a horse show today. She goes to assisted therapeutic horseback riding lessons and today she will get to show off what she has learned. Her Mom Mom, Poppy, and Aunt Maime are coming to watch her. Daddy, her siblings and I will also be there, of course. Lorelei doesn’t do well in a crowd but I’m hoping her instructor can keep her focused on what’s she doing instead of all the people.

Please don’t forget to sign and share the petitions. We also have a donation fund going for Lorelei, please donate if you can and share that page too. Thanks all.

Well, I guess it’s time to really get this day going already!

Until next time, love and hugs

Fall Fun

Hey everyone!! Sorry its been a few days since I’ve blogged. The end of this week has been pretty busy.

Fox Philly came to the house on Thursday. I think they did a great job. They asked good questions and touched on some good points. It will air on October 28th. Didn’t mention what time of the day exactly, but they usually run stories like that several times in the morning and then again in the evening and night. I’m pretty anxious to see how it turns out.

This weekend has been busy, but fun. We’ve had friends in from out of town since Friday evening. Lorelei loves her “Uncle Andy”. All of the kids have had a great time. On Saturday afternoon/evening, I took Lorelei, and little sis, Jolan, to a local park where they where having a fall festival. Aunt Barb and the cousins came along too. Lorelei did ok. There were a lot of people, so she got pretty nervous at times but she was still able to have some fun. She loved the hayride. By the end of the night, she was so overstimulated that we just had to leave and get her home. We came home to find some more of Daddy’s friends had come to visit. Daddy has very good friends.

When there is so much going on around her, Lorelei cannot keep herself together emotionally. She cries, she laughs hysterically for no reason, throws herself all over the floor, grits her teeth, flaps her hands, groans and squeals and so on. The teeth gritting, hand flapping, groaning and squealing are some of her coping mechanisms and self soothing tools that she uses to calm herself down. She uses these tools often throughout the day. Sometimes it works, sometimes it doesn’t.

So, now it’s Sunday morning and we still have company. It has been a good weekend full of family, friends, festivals, fire pitting and fun.

Please don’t forget to sign our petitions, check out the resources page and consider a donation so the we can get Lorelei the things that, otherwise, would just not be possible. We need the help of Lorelei’s supporters.

Thanks to all. Have a great Sunday!

Until next time, love and hugs

Please Donate

A donation fund has been created in Lorelei’s name. The money raised will go towards getting her services and devices that would not be possible otherwise. The family also plans to build a sensory play room in the home so that Lorelei can have a place to strengthen her sensory and developmental skills. This room will also be a place that she can go to feel calm when the world around her is more than she can handle, emotionally.

The money will also be used to help Lorelei’s parents to continue to fight for the legalization of medical marijuana by allowing them to host and attend events, travel to meet with legislators, make and print awareness literature, etc.

Please consider making a donation in Lorelei’s name. The parents hope to be able to help other children with chronic disorders where the family cannot afford what is needed for them.

Please donate what you can. Every dollar counts. Share the link to the donation page so that we can reach our goal. Make a difference.

http://www.gofundme.com/4t4ohk

Thanks to you all

Time For The News

Wow! Today was a bit nutty but good. Started off the day getting three kids ready, dressed, fed, hair done and of course beautifying myself, all by 9am. Today was the day for our local TV news station, WGAL, to come tape. They did a really great job and I’m very anxious to see how they put the story together. It should air sometime in November probably on the 12th. The reporter said they wanted to save it for sweeps.

They first got some footage of Lorelei playing with her sister and brother and then moved on to her taking her morning medicine. I should have known that even though she fights with us tooth and nail to take it, she would do it with virtually no fussing at all while they were here…..of course! Next they did separate interviews with me and hubby. I think the reporter asked great questions and hopefully Jason picked up stuff that I may have forgotten and vice versa. I was so nervous, which is strange, I’m not generally a nervous person. I definitely need to learn to open up and be more myself in front of the camera. I was hoping they would have been able to catch one of Lorelei’s seizures on tape but that just didn’t happen today. I sent them some home video of her having a seizure so they will probably use that.

I think when people see her have a seizure that sometimes they think, well that’s so short how can it be so damaging? The fact is, it happens several hundred times a day. If you think about losing three to five seconds of time, several hundred times a day, it turns out to be quite a lot. Her brain is constantly trying to recover from her last seizure and she’s really not old enough to put all the pieces together.

On Thursday Fox 29 will be coming so its going to be a crazy week! Hopefully I can learn to loosen up by then. It’s so important that I get the message across in a knowledgeable, but emotionally connecting way.

Lorelei has still been eating great. Pumpkin roll has now been reserved mostly for snacks. A huge weight has been lifted knowing that, at least for now, a feeding tube is off the table. Her behavior has continued to be off the rails but I can’t even imagine what is going on in her little mind. With as much craziness as goes on in her brain I don’t know if I could hold myself together either.

We continue to live day by day and fight the fight and hope and pray that someday soon will be able to have chance at a better life for Lorelei through medical marijuana.

If you haven’t had a chance yet, please take a moment to sign our petition. There’s a link to it on this page. Please share it with everyone you know and ask that they sign and share it as well. Thanks!

Love & hugs

I knew it

I said on my last post that it was gonna be a good week….I was right!

Lorelei has been eating like crazy. She has moved from strictly eating pumpkin roll to eating more “real food”. She is a happier little girl when she has food in her belly. Unfortunately, this positive change has not decreased her seizure frequency but at least I am getting glimpses of the joyful Lorelei that I miss so much.

I feel like things are moving in a positive direction with the fight to legalize medical marijuana in Pa. The frustrating thing for me is that, so many legislators claim to have “sympathy” for Lorelei, our family and for all the people statewide living with chronic medical conditions. That being said, so many of them, mainly republicans, aren’t doing anything about it. I really do appreciate their empathy but I can’t really take it to heart without their sincere willingness to actually act on it. There are so many Republican party members that are in favor of medical marijuana legalization in Pa but they never seem to stand up and make it happen. I plan to change that. There are currently 2 bills before the House and the Senate. Senate Bill 770 has been on the desk of Pa Senator Pat Vance since April. So far she has not taken it to the other members of the committee assigned to it for a vote. I have started a petition to urge her to do so. Please take just a moment to sign and share it.
http://www.change.org/petitions/pennsylvania-senator-pat-vance-put-senate-bill-770-for-legalization-of-medical-marijuana-up-for-a-vote

While ur there, if you haven’t already done so, please sign and share my other petition asking Gov. Tom Corbett to legalize medical marijuana in Pa for children and adults. Help me get to 10,000 signatures!!
http://www.change.org/en-CA/petitions/pennsylvania-governor-tom-corbett-legalize-the-use-of-medical-cannabis-for-adults-and-children

I feel like with all the support and great people surrounding Lorelei and our fight, things are going to start moving sooner than later. I can’t wait to speak this Saturday at the Lancaster Hemp Harvest Rally too. Tonight I will be attending an epilepsy support group where I hope to be able to tell our story, connect with more people, and gain support for our cause. Maybe I can even educate some people about medical marijuana!!

As always, please follow my blog to stay up to date with what’s going on and like and share my Facebook page at Legalize for Lorelei.

Until next time, love and hugs

Its going to be a good week!

I can feel it in my bones.
Lorelei has been eating a bit. Of all things…pumpkin roll!! Breakfast, lunch and dinner, pumpkin roll. I will have to admit it’s not the healthiest of foods but at least it’s food. We can put the thoughts of a feeding tube on the back burner for now. She seems happier and has a bit more energy so I’m pretty excited about that. It will lose its appeal, as everything eventually does, but for now, I’ll take it.

I have made so many calls already and it’s only noon on Monday. I have calls into people about organizing another rally, hopefully for somewhere in Bucks county Pa. I have also left a message for Pa Gov. Corbett’s wife, Susan. My hope is that I will be able to get through to her, mother to mother. I have to believe that she, as a woman and a mother, will be able to connect with our story and the stories of so many other children who are in need of medical marijuana. If I can make her see that so many are suffering needlessly, then maybe she can convince her husband too. I strongly believe in the power of a mother.

I will also be speaking at the Lancaster Hemp Harvest Rally this Saturday, Oct. 12 at Penn Square in downtown Lancaster. The event is from 2-4 pm and is sure to be fun, educational and will be attended by so many great and passionate people. I’m very excited and honored to have been asked to tell Lorelei’s story and why medical marijuana legalization is so important for Pa. I hope to see a good turnout. If your in the area, stop on by and join in the festivities!!

I am also a part of a group on Facebook called Team MMJ and we are still preparing for our rally at the Capitol in Harrisburg on Nov. 18, 2013. U can find the details for that on my Facebook page, Legalize for Lorelei. We would love to see our supporters out in force.

I have made some really great connections over the last couple of weeks and together we are working toward change. Things are really starting to heat up and it feels awesome!

If you haven’t done so yet, please take just a moment to sign my petition and share it with everyone you know. The link is here on the right side of the page along with links to like Legalize for Lorelei on Facebook and to follow me on Twitter.
Thanks to all who support the cause. Love and hugs.