Grant Determined

Grant's determination (and destructive power for that matter) has always amazed me. Especially when he wants something. I often tell the story about how, very early in our journey with Grant, I was home with him. We had just had our first visit with our first neurologist. Rylea and I were still in a bit of shock over what we hearing from the doctor and the whole situation itself. At this time, Grant liked to climb on the kitchen counter. Since he was having drop seizures at the time, this wasn't the safest place for him. The easiest way for him to get on the counter was to climb on these bar stool/chairs that we have that are high enough to reach the counter. I knew this and moved the chairs away from the counter. Anytime Grant tried to move the chairs I would hear them making noise as they moved across the floor. Grant realized this and started moving a chair little by little, coming and playing with me in between moves to make sure I wasn't coming in until he had finally moved the chair to the counter without me knowing. He was 2 years old when this happened.

Grant has always been a problem solver. If he really wants something he will find a way to get it. He has learned to open locked doors and get chairs to get to the button that opens the garage door. He has broken windows out of frustration to get outside. He even squeezed himself through a 9in x 10in opening from a window pane he had broken to get outside. This window pane had very jagged shards of glass sticking from it and somehow he did not cut himself, not even a scratch. 

Grant even figured out how to open a gate in the backyard. Given, I may have forgotten to lock the gate, but he still recognized it was unlocked and opened it. This little episode scared me the most. I saw him dart across the backyard and through fence. I ran inside for two seconds to get my flip-flops and he was gone; nowhere to be found. Rylea had only been in the house for about 3 months, so we didn't know the neighbors too well. I ran behind our neighbor’s house screaming his name. Our next door neighbor came out and said he ran up on their back porch but he gone back down the stairs and they didn't know where he went. I continued to call his name when a neighbor two doors down came out in his bathrobe and asked if I was missing a kid. I said yes. He said he was upstairs in his house. I walked in to the neighbor’s house, looked up the stairs, and then a saw two dogs flash by the top of the stairs followed closely Grant. Grant was laughing with pure glee. The wave of relief that overcame me nearly knocked me down. This is how I met my neighbor Blake. Apparently, Blake was watching a friend's dog and he had two dogs of his own. He would leave his front door open with the storm door closed when he was home so the dogs could watch the goings on in the neighborhood. Grant saw the dogs, opened the door, and invited himself in. Blake was in the shower at this moment. Grant followed the dogs upstairs and into the bathroom. This is when Blake noticed his dogs acting a little funny. Blake got out of the shower, turned the corner, and there was Grant; standing there petting another dog. Grant looked at Blake and then said "HI". 

Ever since this little episode, Rylea and I have referred to him as out little escape artist. Grant is always determined to escape. The most recent has been his attempt to climb into the fireplace and chimney. To prevent this, I attached a gate in front of the fireplace.

After the kids were in bed, I plotted down in my oversized chair ready to watch some mindless entertainment. Our TV is on our mantle. I glanced at the the fireplace gate and noted one of the brackets holding the gate to fireplace was missing. I got up and inspected it closer. This is what I saw:

 It was supposed to look like the second picture above. I thought Grant had broken the bar hook attaching it to gate. What I was really looking at was an eye hook that had been straightened.

The bottom hook it what it is supposed to look like. The top hook is what it looked like.

Grant was determined to get this gate off and get into the fireplace. Now if we can just find a way use this determination to get him potty trained.

In all seriousness, I think Grant is more determined than all of us to get better. He is determined to get the that little boy out we all know is in there.

I wanted to point out his determination because Ohio voted on a measure that would legalize marijuana recreationally and medicinally. This measure did not pass. There are many reasons and posits I can give as to why, but the fact remains it didn't pass. I feel sorry for the families in Ohio that could have used this.

The majority of Rylea's family lives in Ohio so I have some stake, albeit through marriage, in that fight. What I can say to those in Ohio is be strong and be like Grant. Stay determined.

To all those fighting for your children, for your family members, or for yourself. Stay like Grant. Be determined to never give up until you get what you want. Move that chair silently, break that window, unlock that door, straighten that eye hook. Stay Grant determined.

This is something I forget to do sometimes and he reminds on daily basis whenever I see him. That twinkle in his eye, that sly smile, the laugh he gives. He is determined to live the best life he can. I must remember to stay Grant determined.

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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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Keep Calm and Have Hope

It has been about six months since I posted and Grant has seen some changes in his world; some very good and some not so good. First and foremost, he has not had a seizure since May (when he started on Onfi). Grant also started school in a special education preschool program and LOVES it. I take him to school every morning and he gets to ride the bus home.  We have even seen Grant make good progress in some areas.

Now, for the not so good. Grant has begun show behavior problems. He has always had a bit of a temper and I am sure his age has had A LOT to do with it. Also, our biggest concern is his impulse control and coping mechanisms. Grant has gotten into the habit of banging his head on anything he can find when gets frustrated. He usually bangs his head on the floor, wall, or door. Lately, he has gotten into the habit of banging his head on the windows in the house. He has broken 5 windows so far doing this. Luckily, he has not hurt himself nor have Emery or Cole been hurt from pieces of glass.

Grant had an appointment with his epileptologist yesterday (1/12) and we left disappointed and frustrated. We were disappointed because we were hoping to have one of his medications (Depakote) reduced. The doctor was very reluctant to do this because Grant was having more than one type of seizure. The Depakote worked for a period on all the seizures. Now, it appears it only works on some. This is the reason he was prescribed Onfi. The doctor also suggested Grant see a pediatric psychiatrist to be evaluated and medicated for ADHD. So, as we were trying to get one medication reduced, there is now the high likelihood he will put on a third. I guess it’s a good news – bad news situation. He hasn't had a seizure in nearly 9 months, but what are the drugs doing to his little body?

I will say, Grant is a solid kid. Ever since he was born, he has been solid. His grandfather calls him Uranium Boy because Grant is so solid. So, if anybody can take this, he can. On the other hand, he has been on some seriously hard drugs since he was 22 months old. While the drugs are stopping the seizures, I can’t help but wonder, what else are they stopping?

Ever since we found out about Grant’s epilepsy and he has been prescribed medications, we have been playing a game of compromise. He was getting as much of a drug he could tolerate. If he couldn't tolerate the side effects past the therapeutic stage and it wasn't working, he was put on a different medication. Trial and error, we know this is causing damage but the upside is greater than the downside, etc. Our question has been where is the quality of life? Yes, he isn't having seizures, but the medication makes his hands shake so bad he can’t use a fork or spoon. Yes, he isn't having seizures, but the medications cause him to stumble because he can’t fully control his body the way he wants. Yes, he isn't having seizures, but his medications make him so dizzy that sometimes he can’t stand up without falling down. Yes, he isn't having seizures, but how much further could his development come if he were able to concentrate.

As Rylea and I watch this, we have to wait. Wait for the drugs to work, wait for his development to catch-up, wait for the little boy we see glimpses of to come out.  Then the question arises how long do we wait? How long can we wait? But we wait and hope.

The medical marijuana bill, also referred to as the cannabis oil bill, in Georgia is called the Haleigh’s Hope Act. It is named after Haleigh Cox. She is a 5 year old girl from Georgia who has Lennox-Gastaut Syndrome and is on such high doses of so many medications she can’t even hold her head up. A slight overdose will actually cause her to stop breathing. She and her mother have moved to Colorado where medical marijuana is legal. She has seen tremendous progress. Their current problem has been trying to wean Haleigh off her current medication.  That should tell you something about the medications that are being used. Haleigh's case is a much more severe case than Grant’s, but the questions of quality of life are the same. So we hope for a better quality of life.

There are so many stories about dramatic turnarounds of children with epilepsy after taking cannabis oil. The Georgia bill came very close to passing last year, but some legislators (one in particular), could not see beyond their own selfishness to help those who suffer like Grant. So we hope it passes this year.

Samuel Johnson once talked about the “triumph of hope over experience.” Of course he was talking about second marriages, but I will overlook that for now.  This quote is very relevant to our situation. We have hope in a medication despite our experience with others. We have hope in the situation despite our experience with past similar situation.  

It is not mistake that so many medical marijuana laws are named Hope of some sort or another. Hope is what keeps families like ours going. Hope is what keeps Rylea and I going. Hope for better days for Grant. Hope for a better days for Cole and Emery. Hope for better days for Rylea and me. Just hope for something better. Some days it is hard to find the hope, some days it is damn near impossible, but we always know it’s there.

At this point, all we can do is have hope. Keep calm and have hope.

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