On my soapbox

Today is July 1^st. I mark this day because this is the day that new laws in Georgia go in to effect. I would be celebrating this day because Georgia would have become one of many states that have legalized medical marijuana, specifically cannabidol oil. This oil could help Grant immensely with controlling his seizures with very few, if any, side effects. Unfortunately, I cannot celebrate this day because Georgia, unlike many states (and nearly all states that border Georgia), failed to pass a medical marijuana bill.

   

The failure wasn't for a lack of trying. The bill had the full support of the GA House, GA Senate, and Governor. The bill failed to pass because of the efforts of one person. This person’s name is Renee Unterman. She is the State Senator for Georgia’s 45th Senate District. This district is in northern GA close to Lake Lanier and covers parts of the populated areas of Suwanee and Lawrenceville and all of Buford. This district also covers less populated areas such as Braselton (home of Château Elan) and Hog Mountain.

Sen. Unterman had introduced a bill dealing with autism and insurance companies that did not sit well with other legislators. Her bill failed to pass the House. When HB 885 (last session’s medical marijuana bill) passed the house (171-4) and moved to the Senate, Sen Unterman attached the language from her autism bill to HB 885. The modified HB 885 passed the Senate 54-0 and was sent back to House. This was on the second to the last day of the Session (Georgia’s Legislature is part-time Legislature and only meets 40 days a calendar year, usually off and on during January through May).

When the bill came back the house did not vote on it due to the autism amendment. The original sponsor of HB 885, Representative Allen Peake (114th  District, Macon area), attached the marijuana bill language (without the autism amendment) to a bill relating to services for the elderly. This bill passed the House 168-2, and was sent to the Senate.

Once there, Senator Unterman announced the medical marijuana issue had been assigned to a Senate Study Committee; for all intents and purposes, killing the bill. When the original bill (HB 885) was voted on in the Senate and sent to the House, Sen Unterman stated “Our Senate position is that the medical marijuana bill goes nowhere without the autism amendment.”

When the Sen Unterman referred the medical marijuana issue to study committee, one Senator on the GA Senate floor shouted “The children are suffering and you are unwilling to serve the citizens of Georgia!”

For those keeping score, HB 885 passed the house initially 171-4, then passed the Senate (with the autism amendment) 54-0, then passed the House again (as part of the elderly services bill) 168-2. So how could an issue and bill so popular amongst the public and legislators alike fail to pass? One simple word -- politics.

Sen Unterman was like the kid on the playground who decided to take her ball and go home, ruining the fun for all; like the kid who dumps the cake on the floor saying “If I can’t have any, then nobody will have any.” Petty politics, selfishness, and personal pride got in the way of treatment of thousands of children in Georgia like Grant.

Thirty-three states have passed medical marijuana bills and three more currently have pending legislation or ballot initiatives (Ohio, New York, and Pennsylvania).  The list of the 33 is:

Alabama

Alaska

Arizona

California

Colorado

Connecticut

Delaware

Florida

Hawaii

Illinois

Iowa

Kentucky

Maine

Maryland

Massachusetts

Michigan

Minnesota

Mississippi

Missouri

Montana

Nevada

New Hampshire

New Jersey

New Mexico

North Carolina

Oregon

Rhode Island

South Carolina

Tennessee

Utah

Vermont

Washington

Wisconsin

That is 36 states out of 50 (72%) that have addressed the issue in level-headed way. These state legislatures have had the courage to set aside their differences and pride and decided to help their citizens. I hope and pray that Georgia (and Senator Renee Unterman) can follow suit come January.

To donate to Grant's fund click here

New Beginnings

Journeys often have restarts or course corrections or direction changes, but they are still part of the same journey. Some are good and work out for the best, some are bad, but still work out for the good, and others are just plain bad. The bad ones you try to avoid but you just can’t.

Back in March, I wrote about Grant’s seizures returning and the 3 day video EEG Grant had and his diagnosis of Lennox Gastaut Syndrome. This turn was bad all around. The general prognosis for LGS is not good. While Grant has shown some progress in his development, it was still very slow. Rylea and I were not in a very good place mentally or emotionally for a few days after the diagnosis.

Grant’s new doctor placed him on a drug called ONFI. This drug is relatively new in the US but has been in use in Europe for over 30 years. After an adjustment period (which are always difficult for Grant), Grant was on the full dose of ONFI. Shortly after that, his seizures stopped. Rylea and I were cautiously optimistic, since we saw this with the Depakote and the seizures returned.

Grant had a follow-up EEG about week ago, and today Rylea and I received the results. The ONFI is working and working very well. The Dr. showed us his before and after EEGs and they were night and day. The doctor explained to us that is EEG now is practically normal. No seizure or seizure-like activity at all.  This was the best news concerning Grant Rylea and I have received in a very long time.

This is wonderful news, but the seizures are only part of Grant’s difficulties. As I have explained before, the timing of his seizures beginning was most likely the worst for anyone. They made it difficult if not impossible for him to learn especially during a crucial time. The seizures have delayed his cognitive development immensely.

Grant has been in speech and occupational therapy for about 9 months. Grant was afforded these therapists through the Babies Can’t Wait program with the State of Georgia. They provide services for developmentally delayed children throughout the state until the child is 3 years old. After 3, the school system provides the therapy needed. Grant turned 3 a little over 3 weeks ago and won’t start school until August. Luckily, our insurance will cover the continuing therapy visits until then.

Shortly prior to his third birthday, the therapists did an assessment of Grant. Cognitively, Grant is about 11 to 12 months old.  He has a long way to go, but since the seizures have stopped we have seen good progress. He is learning more complex things and making more complicated connections. The Dr told us this is a perfect time to really start pushing him to learn more things.

Thank you all for all the support we have received. It has meant so much. Cole runs to the mailbox everyday looking for a letter and the contributions made have helped greatly. We still need all the support we can get. If you want to send a Cole a letter or a package, please send me an email and I will give you our address (his birthday is July 26^th wink wink nudge nudge). If you want to donate to the account (no matter how little, skip Starbucks for a day) click here.

Again, thank you all for the love and support and hopefully the good news will continue to come.

Support

Ever since I started this blog, (and especially since the last entry) I have had many family and friends ask how they could help. Initially, my response was that just knowing that people were there for us was enough. As this journey has gone on and Rylea and I have asked for support, I continue to get the same question or comment; namely "We want to help you, just tell us how."

After some serious thought, introspection, and discussion, Rylea and I have found a few ways you can show your support.

1)  I make this #1 because it is the MOST important to us. Throughout this whole ordeal, there has been one person that has had to endure more than his fair share. He has been sometimes ignored, and he has been disappointed more than I would like to admit, yet he has stayed happy, loving, and caring. I am talking about our oldest son and Grant's big brother, Cole. I wrote an entry about him last August and how he has been our rock emotionally. He doesn't know exactly what is going on, he does know Grant isn't well. He watches out for Grant. He also watches out for Rylea and me. He cheers us up when we are sad. He gives us hugs when he thinks we need one (he us usually right). He is the strongest, most empathetic, caring, sweetest child I have ever seen. I am proud to be his father, yet part me is ashamed of the times I have to neglect him. With that said, Cole LOVES getting letters and packages in the mail (mainly packages). So, if you feel like it, you can send a little card, letter, even a care package. It would brighten his day and really help us out. Please email me and I will send you our address (I  really don't want our home address plastered across the internet). You can email me by clicking here or on my name in the About Me section to the right, then click on "Email". ====>

2)  I have had some people ask about sending money. In the past, I have told them to hold off because I wanted to set-up an account specifically for Grant. I have set up a bank account and I am in the process of setting a special needs trust. This trust will be used to help pay for Grant's current and future medical care. It is specifically for Grant and his care and will not be used for anything else. I can transfer money from the bank account to the trust. I have also set a page with youcaring.com that is linked to the account. If you would like to donate to this account, click here.

3)  Rylea and I are working on other ideas for fundraisers as well. If you have an idea, feel free to let us know. Currently we are looking at doing some fun-runs, and I personally am toying with idea of amount-based stunts (like if we raise X amount, I will dye myself purple and run in the Atlanta Tough Mudder next year).  The more ideas the better.

Finally, I want to thank everyone that wore purple in support of epilepsy and Grant on Purple Day this past March. Thank you for all your love, all your kind words, most of all, all of your support!!!

There and back again

It has been a while since I have given an update. There are many reasons for this; 1) I am a little lazy, 2) With three children including one with special needs, the blog isn't at the top of my mind, and 3) recently, I haven't really felt like sitting down writing it.

This isn't going to be a pity party, but writing this blog and rehashing the events of the struggles and triumphs in our life with Grant can be and is emotionally draining. People have often said to Rylea and I "I don't how you do it. How you handle all this." Our reply is usually "You have too, what alternative is there?" or "You just take it one day at time." That's just it, we take one day at a time, but to look at the situation as a whole, with the enormity and complexity it presents, is difficult and almost impossible. So, having to look back at the days that have gone by and the ups and downs that have happened becomes equally as difficult.

I knew some of this when I started writing this blog, I knew it would be difficult at times, but I also knew this blog would help, not only with raising awareness about epilepsy, but with us as a family getting through this. It brings a sense of catharsis (at least for me). So thank you for reading and sharing in our struggle.

The last post was at Thanksgiving and I had planned to write one around Christmas, but got a little busy. Rylea and I bought a house which we closed on in early January. So Christmas was a little chaotic. It was a little confusing for the boys as well. They were able to open their presents, play with them a little, then we had to pack to them up and be ready to move.

The move, like all moves, was a pain. But it is done now and we all love the house. Grant, Cole, and even Emery love exploring the house (yes, Emery is crawling, quite effectively, now). They all have their own rooms and Rylea and I even have a nice sitting area in our bedroom. In all honesty, the sitting area has turned into our tv watching area, where we cram the whole family on the love seat and watch whatever children's show is on before we put them to bed. It's a really nice bonding time for us.

Another thing happened around Christmas that wasn't so happy. Grant's seizures came back. Now, this wasn't totally unexpected. He is a young, growing boy and we couldn't expect his medicine to not be adjusted. After a few visits to the neurologist and numerous increases in medications, his seizures still hadn't abated. They weren't as bad as before, very subtle, but he was still in a dazed and confused state for long periods during the day.

Grant started speech therapy in October and he has shown enormous progress in his development. The five months he was seizure-free he has followed directions, starting speaking more, understanding more, and communicating overall much better. Even after the seizures came back, he was still progressing and still is.

Recently, Rylea and I were put in touch with the epileptologist in charge of the Epilepsy Center at Children's Healthcare of Atlanta. After reviewing Grant's case, she wanted Grant to get a 24hr video EEG. That EEG took place last week (3/11).

Instead of 24hrs, it turned into 60hrs. For the first 12 hours, he did not have any seizures. The next morning he had one. That afternoon, he had another. Later that afternoon, the Dr. came in and told us what we thought were seizures weren't actually seizures. They were "seizure-like" episodes. Basically, they looked like the beginning of seizures on the EEG, they just didn't turn into full-blown seizures. The second morning, he did have a seizure and they were able to capture it on the video and the EEG.

When the Dr. told us they had captured a seizure, we were so relieved. It meant that we may get some answers we didn't get in Cincinnati (since he didn't have a seizure up there), and it also meant we were able to go home.

We did get some answers, just not the ones I was wanting or for which I had hoped. On the other hand, Rylea had fully anticipated what we were told. We were told that Grant has Lennox-Gastaut Syndrome.

Lennox-Gastaut Syndrome (LGS) is a rare, severe form of childhood-onset epilepsy which is difficult to treat. In general, the prognosis for those diagnosed with LGS is poor. Very few people diagnosed with LGS lead independent lives as an adult as a result of the daily seizures, behavioral problems, and cognitive issues. There is a very high likelihood that Grant has or will have mental retardation requiring some extra treatment and specialized classes and therapy.

Rylea has often told me that she has felt I have been approaching/dealing with this whole situation (Grant's epilepsy) with blinders on. I have often accused her of finding the worst-case scenario and latching on. But I thank her for this. Her approach has kept her prepared for the worst while hoping for the best. My approach, of knowing what could be the worst, but somehow believing the best case scenario, hasn't worked. Yes, it has helped me keep an optimistic attitude and face on during this whole thing. But when the truth comes out, my fall is much harder and faster than Rylea's. 

The one positive that has come out all of this, is that it really has adjusted our priorities and thinking. Before, I was more focused on my career and making sure I make the most money to support the family. Now, the focus is the family.

As of right now, we need as much love and support as we can get. The reality of the news of the Lennox-Gastaut Syndrome has hit us pretty hard. We continue to live one day at a time, we just find some days are harder than others.