The Dr Called...

Mum and I had a great conference call today with Dr Chugani. The results of Tuesdays tests are in. The Dr found a focus in the front right temple lobe of Cully's brain. The exact details I do not quit understand yet but in general this is one of the better areas and it looks like Cully is a surgical candidate.

 We are going to continue to work the meds and see if we can beat this thing but should we fail with the drugs we have another treatment. Removal of the right portion of the brain where the focus is located. 

 Brain surgery, or even more the removal of one side of Cully's brain sickened us when we learned of this treatment a month ago. We consider ourselves to be very lucky to have this as an option now. Without the surgery option we would not have any other treatments after the drugs. 

  Julie and I really do not know much of what is really going on as we are in the early stages of this whole thing and we get the general information from the very best doctor in the world. For all else we learn from the small number of other families that have and are going through this. We read the posts, send off an email once in a while with a question or we keep up on their blog page and see what things they are doing. We also understand that we may be wrong about some of our understanding we have about this "disease" ? What we do know is we have been extremely fortunate in several different ways with this issue and while I get very upset now and then I also have a really positive outlook at all of this. Cully is AWESOME ! And no matter where we end up he and I are partnered up real tight and will not be separated.  This is who and what we are and if you could ask him if he enjoys his life I am sure he would give you a squinted eye, extended arm and a half bent thumbs up.....(Cully's trademark move)..  

On another note I started this blog for a record of what goes on day to day with Cully. Something I could go back through for information for the doctors and such. It is also my personal journal for my own good and outside of myself and my wife I imagine it is seen or followed by few if any. But... if anyone is following this then keep in mind that the biggest part of the story is not written here. It's when Cully runs into your arms each day when he wakes or you walk in the door. When he sits against your arm and snuggles for that 15 seconds before he realizes he isn't running in circles or getting into the toothpaste, markers, or frosting. It's also just knowing him. If you don't, you should. Cuz you are missing it....

 Cully has had two wonderful days since the last increase in Vigabatrin. We have not seen a seizure. He is moody as hell. But its all better when Daddy plays monster with him and chases him around the room.  His intake of crayons, playdoe, and bugs seems to have declined and he and I are working hard on something called "patience". A deep breath and relax while we wait for a video to load on the IPad or wait for the rest of the gang to get ready to go bye-bye. Repeating the word patience while we breath and stop the tears.  Cully has gone potty in the toilet three times this week on his own. The first time while in the bath tub with Sawyer he got out and stood in front of the toilet all by himself. CULLY.... YOU ARE AWESOME........! Good job son...

Not throwing in the towel, just throwing my arms up in frustration

Cully had his tests today and came home to a long nap. He is continuing to have more and more seizures. His Vigabatrin dose was recently increased and we have seen nothing of an improvement and actually it appears that things are worsening.Today they made another rather quick increase in his meds in another attempt to stop the seizures.

Seizures are more bothersome to Cully and his demeanor is changing.  It seems we have reached that point when these seizures are making their changes to our boy. Not a drastic change from black to white but enough to make me realize that this IS is taking some of him.  At first I just could not grasp how such a simple little tiny twitch could take over but I am watching this thing grow into just what we had learned it to be in the beginning . Some of these seizures now fade away with a little boy who is disconnected and in another world. His reaction to a touch or our words is faint or non existent and all we can do is wait for the next one to come while we change this or add that to see if we might get lucky to find the secret to saving Cully. With each increase in the Vigabatrin we near the end of the treatment. There are not many treatments for us to rely on.

This evening we made a family trek to the playground where we had a little picnic and tossed a football, played on the field and watched for birds and airplanes. And tonight Elora is having a sleepover in Sawyers room which will no doubt be filled with giggles and playing long after lights out.

And me? Tonight I will fuel the fire to all the straight and narrow while I sit here in my office with an exhausted 44 year old body, a cluttered mind, endless battle with the finances and a bottle of scotch. A sip here and there while I page through the short list of information online regarding IS and the posts left by each of the families who are in this horrible position just like us.  I just wish there was one family near by that we could sit with and not feel like we are so alone in this.

Here we go again

Detroit Children's Hospital prepping for EEG and PET. Having seizure and staff is observing them.

Off to Children's Hospital early morning

Cully has an appointment in Detroit in the morning.PET scan. 

Unfortunately even with the increase in the Vigabatrin Cully is still having seizures.Things need to improve.

On another note....Mum pulled out a big chunk of plastic and a gummibear from Cully's nose last night. Dats my boy....

And it gets worse..

Lots of seizures. Strong ones. Vigabatrin increased today. 

Cully has had a bad couple days

Things are not going as well as we need. Cully has been having an increase in his seizures these past couple days and tonight they became only minutes apart and the seizures are stronger than before. He continues to have a bit of an attitude and more melt downs. I still get some random love and cuddle time though.  Daddy is getting nervous.

 Sawyer has gone to Grandma and Grandpas for a little while which will help reduce his stress and he even gets to go up to the Soo Locks and enjoy a vacation.Doug is here to be our big helper which we really need. 

Time to get back with the doctors and see what to do now.

2:30 AM

2:30 AM.....

Enter stage left..my son Sawyer climbs into my bed. A tap on my back.. "I think I'm going to frow up!..

Exit stage right..like a rocket....Dad.......yelling JULIE ! ! !

Cully, you need to share. There is not enough Mummy to go around.

Disappointed

Thought things were all ok but Cully had his seizures again today. We are creeping close to the max dose for this drug. Starting to get very worried.
Was able to step away from everything for a couple hours today when my oldest son Brian picked me up and treated me to a birthday diner. Brian has been hired to do a three part series on PBS on of all topics...Children with Autism...

We took Cully to Detroit today to a neuro phych to begin working on his Autism and development. Nice visit that gave a great example of Cully with his rambunctiousness as well as his sweet and gentle actions around other children. Step one of a VERY long process I am sure but I am looking forward to it. It will be rewarding to learn how to improve his communication and shape his behavior, and maybe mine too. He is such a wonderful boy. Anyone that watches him, especially around other children, will see that quickly.

Vigabatrin increased... NO SEIZURES

Dr Rockstar increased the meds and Cully has not had a noticeable seizure in over 84 hours. This is GREAT !!!! 

Cully has an appointment with Neuro Psych on Monday and a PET scan the following week. We are getting him involved in as many social activities as possible to help with the autistic issues and are searching for help for mum and I so that we can learn more about autism and what we can do. 

Todays big Cully moment??  While on a car ride Cully keeps yelling STOP! STOP! Thinking his brother is giving him a hard time we both turn to see whats going on. We find Cully pulling his own hair and getting mad at himself for it. It was a  "had to be there"  moment.......Not sure who won that argument......

Yippie !

Our big day..... Cully had a bit of a rough time with seizures over the last 24 hours. They were a little unusual as they were more of a "spacey look and a little nod". They were more frequent than we have seen in a while too.

Cully wakes up today absolutely crazy wild. Running all over and demanding anything and everything. This I wake up to after a 24 hour mind blowing migraine too.  We get to the hospital and Cully is even more hyper. In the doctors office Cully in just a split second pulls out most of the latex gloves, almost pulls the medical equipment off the wall, and in a blink of an eye removes half the contents from the assistants purse and tosses them.  This is not my usual Cully. But it was amusing to Julie just to watch me try to reason with a two year old.

So, the visit. I now know why another parent refers to Dr Chugani as Dr Rockstar. He was great. He introduced himself to Cully and within a second he and Cully had connected. Cully laughed and gave him eye to eye contact and even learned how to use the little reflex thing-a-ma-bobber on himself. Cully even tried to convince the Doc that when he checked Cully's reflex's that it hurt. Doc did not buy it for a sec and told Cully that and Cully let out a giggle.

The doctor said that Cully shows a wonderful response and his interaction is great. His thoughts are that Cully developmentally looks great and our focus is straight forward to **control the seizures. The truth is that the type of seizure or number is not what we need to worry about. We need to stop them period. So the medications are increased. He would like a PET scan done right away and we are in the process of that now. He noticed in the videos that Cully tends to have a one sided seizure which was of particular interest to him.

All in all it was tremendous visit and we are in great hands. A special Thank you to Danielle (Trevy's Mom) for communicating with us from the start when we were in such shock over Cully's diagnoses, and second for referring Doctor Chugani which has kept us at Detroit Children's Hospital and in the best care. Under the circumstances things could not be better.

Just three days to go..

Seizures?  Yes.. but few and not as dramatic as they have been before..

Attitude? Yes... Man he has an attitude.  We don't dare turn the radio dial when he is listening to one of his songs..

Thought process? Yes... Cully shows a very good thought process as he finds new ways to get at us. His latest thing is to call me BRIAN instead of DADDY. Just cuz he likes to get me worked up.

GOOD NEWS !!!!  Dr Chugani has contacted us and moved his appointment with Cully up to this Wednesday. The best in the field will let us know where we stand and what we should expect. This is a big day for us.

The latest?  Cully is progressing well. Today he interrupted me and said "Excuse me... What is that?" as he pointed up to some decorations on the ceiling.  My little gentleman. Ya know... we do A DAMN GOOD JOB raising our children. We make our mistakes like everyone but these babies of ours are very much worth bragging about.We could not be more proud...  However last month when we caught Cully blowing bubbles in the toilet we did consider rethinking this for just a moment......

Something worth looking at..

If anyone would care to have a better understanding of just what Cully has then the link below is well worth looking at. You will be able to see just what has transpired over the last couple years with Trevy, another boy with this condition. His Mom has done a really great job of describing what I.S. is all about by sharing their day to day journey with Trevy.  Trevy has been seeing the same doctor that just took in our Cully. They call him "Dr. Rockstar"..

http://www.happybeingtrevy.com/p/new-here.html

We had a good run anyways...

Seizures are back. Just 30 minutes shy of the 72 hour mark. Still holding out hope that the drug will work though. We are just in the first stage of it and making adjustments to it or combining other medications may still do the trick. 

On a more positive note we have learned that the world renowned doctor for I.S.that children from all over the world come to see has scheduled a "non clinical" day to visit with Cully. This means he has asked to have a day where he will have more focused time with Cully. We are so happy that he has taken Cully under his care. 

Amazed

We are in the midst of a miracle...We are 48 hours plus without a single seizure noticed.

Cully is happy, hyperactive, speaking clear, and today he used his "please" and "thank you" while speaking. He worked on listening and when a melt down started we used calm talk and put a smile on our face to get what we wanted. Now when I tell him to stop acting like that and to use a smile he does well doing just that however in Cully's mind he associates a smile with a picture. Each melt down is interrupted with a half cry smile with a shaky voice saying "CHEESE" 

A happy house today. Sawyer is also up and riding his new bike with NO training wheels. And doing GOOD ! 

Guess What !!

We may have a miracle here. My beautiful little Cully had a good day.

NOT A SINGLE SEIZURE !

NOT A SINGLE SEIZURE!!!!

My boys...

My boys have a lot on their mind too. Cully is important to them and they are very worried. They are being a big help too.

Doug who is 14 years old has taken over for both mum and I when we need to step back for a moment. Many times he does so with out being asked. When Cully is having a hard time Doug will turn it around in a hurry and next you find them chasing each other around the couch or watching a sing-a-long on you tube. While mum was changing a messy diaper on Cully today Doug walked into the room and found both Sawyer and I with our shirts pulled over our nose.  Doug shook his head and told us to "grow up".  Yeppers... He changes those things with no problem. Funny how dad disappears just about the time Cully needs a change...

Sawyer you would think would be upset at all the attention Cully is getting but its not like that. He was lucky and got to go over to Grandma and Grandpa J's house for a handful of days where he got spoiled just as we wanted. This I am sure helped but when he came home he took on a big brother roll right away. Cully loves Sawyer and is constantly trying to gain his attention. Every time Cully does something neat he has to call out for his "YourYer" to look at him. And Sawyer does. And when Cully babbles something to "YourYer" Sawyer just smiles and say "Cool Cully". But Sawyer really surprised me yesterday.  I decided to share with him more about what is going on with his baby brother. I explained that Cully may likely be with mum and dad even after he is grown up and a big boy. I explained that his thinking parts have a little problem right now and we are trying to fix them....  Sawyer told me after that....... "It's ok Dad. When you guys are old I will take care of Cully".......

That is how my boys are growing up...

****sigh...

Seizures...

Day two on Vigabatrin

A happy boy that seems to spend a little more time on my lap today than usual. Unfortunately we had more seizures today after his nap time. Cully is visiting with his sister right now and eating playdough.

We had enough of Cully moving the table around. It is now screwed down to our hard wood floor.

...

...

Day one....Vigabatrin

Cully just got his second dose at 8pm. What have we noticed thus far???  That a few people must have been crossing their fingers today for Cully. Only one cluster of seizures today. After his first dose I had repeated calls from home.. Julie says it was like Cully woke up! I returned home and found clear speech, alert and playful, and smiles. Not that it was a drastic change but a notable one for sure. Unfortunately 7 hours after his first dose he did have seizures but only that one cluster.  His second dose took little time to bring a big smile to his face and uncontrollable laughter while playing with him. It sure does not help him sleep though..

Drug arrives....

Cully took his first dose of the Vigabatrin this morning. This is a "CROSS YOUR FINGERS FOR CULLY" day.

A second update of the day

Second update of the day. Cully has only had a few of his seizures today however I think he is beginning a couple different types of seizures as well. I might be wrong but we know that other types of seizure are likely. He has moments where he stops and he holds one side of his head and wiggles his fingers. Another new thing I have seen is his eyes will roll back for a moment. We are hearing chattering of teeth grinding too. Only a few times though and that may very likely be Cully being a two year old and doing normal two year old things.

Cully was placed on Onfi July 25th, his first medication. He doubled his dose yesterday and you can see this is effecting him. He acts a little wobbly and unstable. He continues to point and babble about something. I think he is sort of out of it so to speak but I could be wrong and he may know just exactly what he is saying. I like to think that this is just the drug and not the start of his digression. My gut tells me its the drug too. The current plan of attack by the neurologist is to continue the Onfi while he begins his new meds. The new, dark scary med is called Vigabatrin. They will be here tomorrow to deliver it to us.

The reason I post each little thing I notice is so that this blog can serve as somewhat of a day to day journal that can be viewed by the doctors, therapists and anyone else that may find a pattern in his activities or perhaps see something that we don't.

Geez, glad that's over..

Wow. what a night. Too many emotions and too many thoughts. Glad we got that one out of the way..

This blog is supposed to be a place to post what is going on with Cully and things around him. This is not the place for me to sulk and get angry. From here on I will focus more on Cully.  Well I will try to anyways....

TODAY?  Well a few seizures this morning thus far. Cully seemed a bit lethargic when I got home but his Dougie has him dancing and playing tag now. Seems to be doing better now. Still waiting on the new med. Tomorrow morning the drug will be delivered to the home by the drug company. Asking everyone to keep your fingers crossed in hopes the meds do what we need them to..

OK. Emotions settled and I got to thinking. I am not a big believer in the "All Mighty" stuff .....but how are we so lucky to have this little guy in our home? There has to be a reason we are the ones chosen to have Cully here. There could not be a better home for him either.   Ain't it cool?

Well we have to wait and see just how the rest of the day goes now. Will update again later this evening.

I love you Cully

I love you Cully. And I'm so sorry. And I will find a way to protect you. For I am Daddy......

Not a good day today

Today Cully is having more seizures than we have seen to date. And today we found out the scope of just what is happening to Cully. Not a simple epileptic child with autism but rather one with a horrible form of epilepsy that may very likely take away  most of his brain with these pathetic seizures we have to watch him go through. Today he is a smart boy with smiles singing along with songs and dancing in front of the television. He runs to me every day when I walk in the door and jumps into my arms. Today while at the doctors office I watched him kneel down to a little boy who he called "baby" and he took on the big brother job and showed the baby how the toy works. He talked baby talk to him and even gave him a hug. This is how my Cully is growing up. Learning to be a helper with lots of hugs to go around. This is my Cully today.  But if you read the numbers for this diagnoses then it is obvious that it will take over Cully and leave him a child with severe brain damage. If you think positive like everyone says then you realize that he might just pull through with minimal damage and he might be able to live a more normal life with special programs and groups that can help in his future. But regardless of what I follow the outcome will be what ever it will be and the Cully that I have will not be here any more. And he didn't do anything to deserve that.

Now with all the information laid out on the table Cully will begin taking what 24 hours ago was a dangerous disgusting drug but today it is now our only miracle drug.  Our best hope is that this will end his seizures. And that's all I can do for him.

I pulled all my tricks out of the bag today knocking on the doors of my clients, emails and phone calls in hopes that someone might have that magical connection to someone in neurology or epilepsy research. I don't have a very good track record of asking for favors but I sure did today. Everyone has been so kind in the offers of help but none were able to open a door to Cully and take him under their wing.

A call to the University of Michigan Neurology department lent us only the directions of a process to get Cully an appointment which will take near a month before we can even schedule. Papers must be mailed to us. Return papers with all collected medical records and wait for a review. Upon the outcome of the review we will be contacted and informed if Cully is accepted as a patient.   I don't know how much of Cully will be here in one month. So we started the process just the same and will continue with the only option we have at this point and take this drug. I just hope we are not missing something that could be helping Cully right now. In one month it may not be too late to learn of something but what might it have helped before then if damage is being done each day?

4 weeks ago he was just a hyper healthy little boy.