The little things

"Sometimes," said Pooh "the smallest things take up the most room in your heart."

If you have children, you definitely know this. When they come into this world they are so small, but they make your heart want to explode because it is so full. But, as they get older and you get older, it's the little things that you start to take for granted. I have to constantly remind myself to remember the little things. Like the way you feel when they say their first real word, or take their first step. The pride you feel when they take the initiative to make new friends, or the first bike ride without training wheels. During the chaos of daily life, the little things can sometimes go unnoticed, but they are there.

When you have a special needs child, it always comes down to the little things. It was the little things we noticed about Grant when we knew something was wrong. Ironically, it was one of the littlest things that Rylea noticed that turned out to be the biggest issue. Rylea first noticed the 'head nods' that turned out to be seizures.

And now, in our journey to get him better, it's the little things we look for.

A little over 6 weeks ago, we started Grant on CBD oil (medical marijuana). While his seizures have been controlled by the onfi and depakote, it appears he is still having some seizure-like activity based on his last EEG. Our neurologist isn't supportive of using the oil for seizure control, but she is supportive of adding it to help his behavior and cognitive issues.

He was sick with a cold when we started him on it. When Grant gets sick his behavior goes downhill. He becomes stubborn, won't listen at all to any directions, and screams a lot. Basically, he is not pleasant to be around. His teachers at school even made mention of his behavior a few times. This lasted about a week and a half. During the worst of it, we had Grant's IEP meeting with his teachers. IEP stands for Individualized Educational Program and is Grant's plan for the school. It lays out the goals we would like see achieved, the therapies he needs and any special instructions. Before going to this meeting Rylea were hoping to get Grant in the full-day program at his school. Getting him into the program really depended on whether Grant could handle a full day of instruction and if he would benefit from it. The way his behavior was, we were not very hopeful, but the meeting went very well.

His first day of the full-day program also came on the same day we increased his dosage for the CBD oil. His teacher had a glowing report of him. His good behavior continued on. Over the next several weeks, Rylea and I starting noticing some small things here and there with him that have added up to really big things.

Firstly, he has starting picking up objects around the house and presenting them to Rylea or me with the names. He would pick up a teddy bear and show it us and saw "teddy bear," he'd pick up a bowl and show Rylea or me and say "bowl," he'd pick-up Emery's blanket and say "Emery!"

Secondly, he has been much more playful with Cole and Emery. In the past, his interactions have been to steal toys from them and run. Recently, he has actually been playing chase and interacting with them. The house is filled with quite bit more laughter now.

Thirdly, he is starting to be able to answer questions appropriately. He pulled a picture off our refrigerator that we have of Cole and Grant playing with a sand table. This picture was taken a few years ago. I pointed at Cole in the picture and asked "Who's that?" and the Grant replied "Coley." I said "very good!!" then pointed to Grant in the picture and said "Who's that?" he looked me in the eye and "G-R-A-N-T" My eyes welled with tears. Not only was this first time I had seen him recognize himself in a picture but he spelled his name. He actually spelled his name!!

Lastly, but certainly not the least, his teacher has said that he has been very talkative lately, and not just babble and nonsense words. He is actually saying sentences and conveying his thought through language.

Seeing it here all in one place, it looks like a great deal, and it is. But we saw it bit by bit, piece by piece, little thing by little thing. He still has a quite bit to go, but this is enormous progress. All because of a little plant. It's always the little things.

To donate to Grant's fund click here

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.

To donate to Grant's account, please click here.

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.

If you would like to donate to Grant's fund, please click here 

Please like Grant's page if you have not already. 

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.

To donate to Grant's fund please click here

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. 

Thanksgiving

Thanksgiving is here and Rylea and I would like to give thanks. Thanks to all who read this blog and care about Grant (friend, family, or stranger). Your support, spoken and unspoken, has meant the world to me, Rylea, Cole, Emery, and especially Grant.

To the Albers family, thank you for all that you do and have done.You all have helped us more than you will ever know. Thank you Linda for coming down on a moments notice to be with Rylea when we first found out about Grant's seizures. Thank you for staying up late with me while we watched marathon sessions of Downton Abbey. Thank you, John and Linda for being the best grandparents Grant to could have, giving us the all support we needed during a very difficult time, and raising a daughter that can handle anything that comes her way, no matter how challenging (including me). Ann, thank you for being Rylea's shoulder to cry on when I couldn't be. Lauren, you have been a champion for Grant since you heard about his epilepsy. Thank so much for organizing everything for the epilepsy walk, for being Grant's guardian angel during his testing, and being there for Rylea. Ricky, thank you for putting up with Lauren so she could be Grant's guardian angel and watching Grant while I was up there with him, you are truly one of his favorites. Kate, thank you so much for all of your help during Lauren's wedding. We could not have made it there and had such a wonderful time without you. Beth and Tom, thank for all the support, letters, and prayers. And to all the Albers family, thank for all the love, support, and prayers you have sent our way. It has not gone unnoticed and is immeasurably appreciated.

To my family, thank you so much for everything. For all the dinners and the late night chats. Thank you for making Rylea feel like she truly is a part of our family (for better or worse). To my mom and dad, thank for all the encouraging words, sympathetic ears, guidance, and support you have provided us. Thank you for being the best grandparents Grant could have. To Todd, thank you for listening to me whine and bitch and giving me a distraction when needed. Thank you for finding the "anonymous donor" that got us through a rough patch and made things much easier on us. To Mark, thanks for the support and concern you have shown and willingness to give whatever we have needed.

To our friends, thank you so much for being our friends and understanding that being a true friend is being there for the bad times as well as the good. To the new friends we have made in Ivey Ridge, your friendship over the past two years, and especially the past six months, has meant the world to us, thank you for that. To Reid, my brother from another mother, thank you so much for helping me get my head out of the situation when I needed, providing the distraction when I needed, and the support when I needed. You are the best friend I could have. 

Thank you to all those who have ever uttered a kind word or said prayer for us. It has helped us cope and kept us going. To all those mentioned in here and those unmentioned, you have helped change the lives of our family and especially Grant's for the better. I cannot express how appreciative we are and we owe an immense debt of gratitude to you all.

Thank you so much and Happy Thanksgiving!!!

Test Results

I have been meaning to write this to give an update on Grant's testing results. Sorry for the delay.

It has been about 2 months since we received the test results and we are still trying to figure out what they mean. I will start with the good news (and it is very good news). Grant has not had a seizure since mid/late July. Ironically, the seizures stopped just before he and Rylea left to have all the testing completed. Grant was in the Hospital a total of 9 days. During this whole time he was off his medication and he still did not have a seizure. There were spikes on the EEG that showed some pre-seizure activity but not full blown seizures. While this is excellent news, the one time we wanted him to have seizure, he didn't.

The second part of the good news is that the neurologist does not believe he has cortical dysplasia. After reviewing the MRI, PET scan, and MEG scan, by three separate neurological radiologist (including one that specializes in pediatric neurological radiology), they could not find any evidence of cortical dysplasia. They did notice a "white spot" and what we were told was this was a little unusual for someone his age, but it could not be the cause of his seizures.

The third part of the good news was that since he didn't have cortical dysplasia, and he doesn't have any brain damage caused by disease or injury, the cause of seizures is more likely genetic. Genetic meaning the way my genes and Rylea's genes combined to make Grant, so it was not inherited. The reason why this is good news is because there is a possibility that he might out grow the epilepsy. This possibility is tempered with the fact he has developmental delays most likely caused by the amount and timing of the seizures. Children with developmental delays and seizures are less likely to out grow them. But, there is a possibility, unlike with the cortical dysplasia.

Now, for the more challenging news. While we are very happy he hasn't had a seizure since July and he didn't have one while he was being tested, the neurologists could not see where the seizures were coming from or to where they were spreading. Therefore, the tests were fairly inconclusive other than he doesn't have cortical dysplasia.

The other part of the challenging news is Grant's developmental delays. The seizures began at, arguably, the worst possible time in a child's development; right when they begin to speak and learn to associate objects and actions with speech. Every time Grant would learn something, he would have a seizure and then have to start all over. It is like working on something on a computer and but when you go to save it, you restart the computer...every time. Eventually, Grant stopped talking all-together. You cannot understand what this did to Rylea and I as we watched it happen, helpless to do anything. The problem was, we had to stop the seizures first.

Now the seizures have stopped and we have Grant in speech therapy. Things are coming along, not as quickly as we would like, but they are moving along. I think Rylea and I both knew this was going to be a very LONG process and journey, but we never anticipated the ups and downs. We are hoping to start him on occupational therapy soon. This is more like play therapy and will help him interact with others more effectively (boy, if that didn't sound like a therapist talking).

Like all people, Grant has his good days and his bad days. While he still doesn't talk much, he lets us know what he wants and when he wants it. In the past month or so we have seen Grant smile, laugh, and play more than we have in a while. We know there is still a little boy in there that wants to come out and we are giving him everything we can to make sure he does.