Divine intervention?

All in all an ok Cully day. Mum says he woke up a grump and a handful but when Daddy returned from work I found a Cully waking from his nap in a very good mood. I did not observe a single seizure today but mom did say she saw one this morning.  That is a great sign.

We were about to put Cully on the new medication that has me so worried when we received a phone call today. Two people we hold in very high regards had heard about the intent to put Cully on this medication. We were informed just how dangerous this drug is and with no questions asked Julie and I will refuse the drug for the baby. This information comes from people we trust completely and are extremely credible. Their intervention may very well save Cully from even further troubles in his life.  But on the other hand we are very worried just what to do from this point. If we do not stop the seizures immediately Cully will no doubt suffer the brain damage that this particular type of epilepsy causes. Tomorrow we will inform Childrens Hospital that we will not agree to the drug and see what options we may have. With luck I will find someone that might be able to open the door to a neurologist that can work with us to find a quick solution.

I hope tomorrow is as good for you as today Cully.

How did it go?

Well we saw the falls, let Cully play in a kids play area at the arcade, and even did the SkyWheel as a family. Cully had a couple melt downs. Food time was the worst for me. I was stressing so much that I refused to even place the order. I don't know how my wife does it but she keeps it all in motion while we all fall apart. She knew I was way beyond my limit and with a kiss on Cully's forehead I said gold night and got a few minutes of quite time.

Doug has really picked up on Cully's needs and taken on a very big role and Cully is very close with him. He helped make tonight much better.. He is still a dweeb but he is my dweeb. He is going to be a great daddy.

Looking forward to snuggling up with Cully tonight on our last night out on the road.

Daddy out...

Good, Bad, and the Ugly.

We are back home from our trip. This morning we got a call from the neurologist. Cully has a form of epilepsy that is described as "Devastating" and I don't want that. Julie says it is described that way because if it is not treated right away the brain becomes damaged. The information we read states that about 10% of studies were tested without mental deformations to start. Basically linking this to mental damage but 10% did not have it from the beginning and the rest did? Well Cully is very smart. He is ahead of the norm for sure.

The neurologist wants Cully to start a drug which can cause blindness and I am not so sure I am ready to make that determination for him this soon in the game. Plenty of research to do before I can make a choice for him like that. Nervous now.....

I found several videos online of children with the same form of epilepsy as Cully and several had wonderful stories of complete recovery and I am willing to wager that will be the outcome for Cully.

Oh! I almost forgot to mention.... I got a ticket in Canada today.  So glad all the little ones were there to share this with me. I am sure they will never let it go too.  I was doing 25 over and owe $52. Don't forget this is Canada though. So that is like 12 over and like $2 And I do not agree. In fact Doug and I were talking about what the speed limit was and noted I was doing 98 (? KPH) in a 100 KPH zone just seconds before the lights went on.

NIAGARA FALLS !!

Well here we are high up in the Marriott looking over the falls. One million things to do but all that is important to Cully is that he has a bed to jump on. 30 minutes of bouncing and still laughing at the top of his lungs.

Last night Cully woke up fussing a bit and when i put my hand on him he snapped "no" and went to mum. I turned over and went back to sleep. A moment later i felt him tapping his finger on me. I turned to him and found him giving me a little wave and a smile. I think it was a "i'm sorry". This morning he woke up looking at me and smiled. Another good day. We drove to a bunch of old towns hidden on the back roads. Found a Subway and got four foot longs and some soda pop. Drove to a little park and goofed around and ate.

Seizures are plenty still and the meds don't seem to be doing anything. Mum thinks perhaps a little less seizures than before. We researched the meds he is on and found it is a brand new drug. Don't like that much.

Going to take the boys to the falls and all the attractions now. Will have a good grip on Cully though.

Got a pic of Cully's first look at the falls. It followed with a "wow"

Cully is in New York !

Found our ice cream in Central NEW YORK !!!! After hours of back roads and lots of fun. Cully is having fun with his family. While driving down the back roads in the Finger Lakes Sawyer says "I have to pee pee". Cully hears this and finishes the alphabet..."q r s t u v w x y z". Dats my boy.....tomorrow? No idea where we will end up...... Daddy out.

Going out for ice cream.. Daddy style

Ice cream trip with the kids. Back in THREE DAYS ...... Will post pics while on the road... from ???? We'll see.

New Meds, day two

Welcomed home from work with a big "Hi Dada" and open arms... Night out. Just Mum, Cully and Daddy. What better than call Grandma and Grandpa J to meet us half way for diner...  Day two on Cully's new meds. Still having seizures but I think maybe a few less. Cully was quite the little gentleman tonight. He behaved very well and let us know when it was time to leave the restaurant.

Lots of calls and texts from our friends offering help and sending us good wishes. Thanks everyone. That means a lot to us.

Cully Diagnosed today. "Autism and Epilepsy

A neurologist and a wonderful staff at Childrens Hospital Took in Cully and Mum for a night. In just minutes the staff informed mom that Cully was not just having the handful of seizures that we were observing but rather a great amount more. The findings sound horrible but knowing what is wrong with our Cully is a positive step. Cully is now on medications for his seizures and we are aggressively searching for help to teach us how to best take care of him and teach us more about autism.

Mum has had Cully involved in several programs for some time now  to better help Cully. These programs are for Mum as well as she is always trying to learn more in respect of child development and care, something she has always held an interest in. Upon returning home from the hospital we were greeted with a new visiting speech therapist in our driveway. An appointment we failed to remember. An Angel as I later learned. Seems our new visiting therapist has a wonderful background in children with special needs. It is her particular interest and she is currently working on a certificate in the field of autistic children.

Now that we know what is going on we can move forward. And now we can learn to understand Cully even better. Cully is laying down for the night right now with Mum. Just a few moments ago he had gotten into a bathroom and ate toothpaste, ate a crayon, sent a few random emails and made a few calls on my smart phone and even moved the picnic table across the kitchen to the mouth of the hallway and tilted it up somewhat so that he could better move it down the hall.  Just normal Cully stuff. In the middle of it all he smiled, laughed and jumped on the bed with me. Another good day.