a little of everything

First and foremost: thank you! I was totally overwhelmed by the response to my last blog and I apologize for not having gotten back to everyone! I realized I should have had ALL my ducks in a row with what I needed before I put all that out there. I have been hard at work ever since trying to figure out what I need and how to best go about all of this.

On that note, along with other epilepsy parents, we’ve created a group called Hope for Children with Epilepsy in North Carolina.photo

You can follow what we are doing on Facebook at https://www.facebook.com/Hope4KidsNC

We are following the lead of a group in Utah who is pushing for the same thing, to legalize the import of high CBD/low THC Cannabis oil. One thing that you can do to help us accomplish our goal is to write to your legislators. Email is ok, but actual letters sent via snail mail are what they pay most attention to. Its especially wonderful if you actually sign it by hand and use your own words rather than any template I create for you.

To find your NC legislators, click here and enter your address. It would be great if you sent letters to both your NC Senator and Representative. Thanks so much in advance!

The points that would be good to include are:

1)  that you support us, either Maddie Gorman and her family, or Hope 4 Children with Epilepsy, in our mission to bring new treatment options to children in NC with severe epilepsy

2) that you support the use of High CBD/Low THC Cannabis oil for treating severe epilepsy that doesn’t respond to conventional treatment

3) you could state how our story, or the story of anyone with severe epilepsy, has impacted you

4) let them know that you want them to contact me or Hope 4 Children with Epilepsy to discuss ways to make access to this lifesaving medicine legal for suffering children in NC. They can contact us at hope4childrenwithepilepsync@gmail.com, https://www.facebook.com/Hope4KidsNC or you can share my blog address with them

5) let them know that you will follow up with an email or phone call to their office to discuss the subject

I’m still trying to figure out what all else we’ll need to really get the ball rolling here. If you happen to know any lobbyists or aspiring lobbyists in NC that want to work for free to try to accomplish something amazing, please let me know or pass them my info! Part of the reason that I published that last blog when I did (before I was 100% organized) was that I had filmed a TV interview that was supposed to have aired that night. I wanted to have something up on the blog which explained my position on the off chance that the news piece didn’t fully represent my views. The piece was delayed and is now supposed to be broadcast on November 26th during the 11pm newscast on the CBS station in Greensboro NC. I’ll update y’all if it changes again and I’ll post the link to it once its available online.

 

In Maddie news, there has been a lot going on here as well. I am pleased to say that while she is still having drop seizures, they haven’t increased dramatically. That was my initial fear…..that once they came back, that they’d quickly get back to previous levels. For now they seem to be holding steady. I am truly devastated that they are back. But having seen them so much worse before surgery, I am still grateful to the relative safety that surgery has provided her. And for all of the amazing things she has been doing since that scary day in July.

 

Aside from the re-emergence of her drop seizures, there is another issue that has created a lot of difficulty in our life right now. I mentioned before that she had lost weight and that feeding wasn’t going well. Two weeks ago, we finally got in to see the Feeding Team at UNC. They had lots of advice and tips on ways to get her to eat, but after evaluating her, they felt that for the time being, it was important that most of her meals come from pureed foods. They felt she wasn’t chewing enough and that she was pretty much swallowing food whole. The good news is that she is still swallowing well, but we don’t want her to think its ok just to swallow food without chewing. So we have been pureeing foods ever since. This is a LOT of work. And it makes each meal extremely slow, especially since she is fighting eating at times still. So it takes a lot of preparation for me to be ready with nutritious, but fattening pureed meals to feed her 4 times a day. Especially since she is still gluten and dairy free and we try to eat all organic. So I spend lots of time in the kitchen fixing really strange stuff.

 

The Feeding Team also suggested changing her reflux med. It seems unusual that she would have had changes to her reflux (yes, our precious kiddo has been on high doses of reflux meds since she was two due to all of her chemo and then seizure medications) due to brain surgery. But is IS possible that she is so much more aware since surgery that she notices the pain of the reflux more since surgery. And that the pain might be why she decided to stop wanting to eat. The stopping eating could have then led to weakness chewing which may be why she stopped wanting to do that also. She saw a dentist last week and she is also getting in her 6 year molars right now and that can be very painful, but they didn’t think that would be reason enough to stop chewing entirely. So we started on the new reflux med. Two weeks into it, I can safely say that her eating has been consistently getting worse. She is now waking up many times a night and having trouble going back to sleep. That is a sign of reflux in a child that can’t describe the pain. So just today we changed back to her old medicine to see if we can get back to where she was sleeping through the night. She is eating the purees very well, and is much happier not being asked to chew as much. But part of this process is to teach her to chew again, so that eventually we can get her back eating normal foods. Her weight is just holding steady, but its better than losing.

 
We also saw the neurosurgeon and plastic surgeon at Duke to follow up on the leakage of cerebral spinal fluid from about a month ago. The neurosurgeon seemed to think it was a fluke and that it is unlikely to happen again. She will have a repeat Brain CT scan on Dec 18th to verify that there are no active leaks or fluid build up. Her incision had closed back up by the time we followed up with them and they both felt it looked good and closed this time and that there were no signs of infection. So again, we were told to just watch it, so that is what we are doing!
As always, we are so thankful for all of you wonderful people who follow Maddie’s story. Please continue to keep her in your prayers that her seizures do not increase and that we have NO more surgical complications.
Wishing you all a wonderful Thanksgiving holiday, hopefully surrounded by family or friends!
Love to everyone,
Liz, Brandon, and Maddie