Long Days, A Short Year, and The Inevitable Catch-22

One of the only things in life that is constant is change. I point this out because about this time last year, I was lamenting the fact that the Georgia Legislature had failed to a pass a medical marijuana (CBD oil) bill. Shortly after that failure I became involved in the lobby to help pass it in the next session. While I could not make it to the Capitol to lobby I made phone calls, wrote letters and encouraged many others to do the same. The valiant efforts of a determined and steadfast group known as the Mommy Lobby and the Dadvocates eventually got the bill passed and signed into law. I would like to thank those that fought so hard through endless days and many twists and turns. Thank you to those who did more than I ever could. Tears fell from the eyes as I watched the votes. I knew Grant would have some relief.

And speaking of relief, Grant has not had a seizure in a little over a year. The onfi has been working. His development, on the other hand, is still a very large concern. He turned 4 at the end of April; and while he has made progress, it is obvious (and painful) to see that his little 2 year-old brother, Emery, is more advanced than he. Again, I have to ask what else is the onfi (and the depakote for that matter) stopping? This question is the reason so many fought so hard for access to CBD oil. I have already written about my opinion and personal struggles with the side effects of the drugs. The harsh reality is one of the drugs Grant is on enhances the side effects of the other.

There is little boy in there that wants so desperately to come out. I see it when he comes up to me and Rylea with arms out stretched and says "hug, hug." I see it when I kiss him good-bye in the morning and he says "love you" or when I come home from work and he says "DADDY!!"

This is where the Catch-22 comes in. Rylea and I really want Grant to start the CBD oil. There are very few side effects, considerably fewer than the current drugs he is on. But his current drugs are working. The medical community in general, and especially neurology, has a 'if it ain't broke, don't fix it' mentality. So, adding a non-clinically tested (a very debatable fact) to his current cocktail and then weaning him off other drugs that work is not something the doctors are really keen, Our next challenge is to educate the doctors to show that this will not only help with seizures but will help with his behavior then in turn with his develop.

Finally, on the development side, we have received a referral to the Marcus Autism Center. Grant has not been officially diagnosed, but he does show some autistic characteristics. One of the biggest benefits of the Center is access to a developmental pediatrician. We have looked a few in our area and most have had a 6 to 9 month waiting list on top of not accepting insurance. With access to the Marcus Center, it opens up a new wealth of resources for Grant.

To recap, Grant has been seizure free for a little over a year, Georgia now has access to CBD oil (medical marijuana), we are trying to get Grant on it, Grant has a referral to the Marcus Autism Center.

We still need all the support we can get. Cole still loves get mail and his birthday is approaching (July 26). Send me a message and I give you our address to send him a note or card.

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