Having a bad day... and doing kinda ok too

 Well Cully had a rough night. After he woke in the middle of the night as he usually does his mum went in and slept with him. A while later I heard Cully yelling and kicking the door and the wall and throwing toys. When I went in I found him very upset and he even hit his mommy. A real hit too. I spoke to him, told him to relax. Took his stuffed animals and laid them in his bed and covered them up with blankets. Looking at Cully and explaining that it was night night time and we need to get his babies to bed and him too. I got a thumbs up and he crawled into bed and got tucked in. Mum and he slept the night away.

 Mum and I think he was not awake until shortly after I went in the room as his behavior was unlike Cully even when he is truly upset. Cully has began to have terror attacks occasionally and I think these are due to his medication and last night is just another part of the journey.

 After Cullys little event I was unable to sleep the rest of the night so I went to the office and wrote his doctor an email asking if there was any chance we could take Cully off the Vigabatrin which is the high risk drug he has been on for some time now.  That letter went out at 4:30 am and it was not long before the wonderful doctor replied to me with the explanation of why we can not stop the medication at this time. I have a lot of faith in Dr Chugani and will follow his recommendations.

 Cully has been having hard seizures today. Multiple clusters with no pattern. All you can do is watch and wait for them to stop. My intentions today were to take off to the cabin for the night with just Sawyer so he and I could have a chance to do father and son stuff with no distractions for 24 hours. Just not a good time to leave with mum under so much pressure and Cully not having a good day.

 On another note Cully is still using words and even came to me this evening to let me know he had to go potty. This is a very good thing. I have had every conversation today with him begin with a please, answer with an OK, or end with a thank you. Again, this is not what we are suposed to be seeing with the IS.

  Cully, mum needs a break and I don't know how to give it to her so for the next couple days everything will go great OK?

Tests Tests Tests

Cully made another visit to Detroit Children's Hospital this week for tests in prep for starting the Keto diet. Julie will be spending about 4 days in the hospital with Cully once the go ahead is given for the diet. Seizures have continued but Cully just continues to developmentally improve. We are structuring sentences now and working on new exciting dance moves. He is very music oriented.

 Sawyer, Cully's five year old brother, has put his thoughts into a video for Cully. This was a father son project and Sawyer came out on top as the star right there with his lil brother Cully.. Check this video out. !! Its a must see..

About the diet Cully is starting..

Big change of plans..

Cully will not be starting the ACTH drug. The doctor has prescribed the Ketogenic diet. While we do not know a lot about this yet we know it has been used very often with IS and we also know that it is a big undertaking. Nervous we will not do this right and I do know that just a single cracker, bite of a cookie or anything at all not exactly perscribed will mess the program up.
 Now, how do we pull this off with a child that eats more than the rest of us and also eats anything he can find. Like crayons, bugs, paper, etc....?? Having the other kids around is not going to help either....
 On the other hand it is not a $40,000 drug either....

Justify $40,000 a vile for your persription

 ACTH is the next treatment and we will begin the treatment most likely within the next handful of days. This is an injection that Cully will get at home after his first round and evaluation at the hospital. At a whopping $40,000 per vile I am having nightmares of dropping one. We know little about this treatment but we have learned that Cully will have to follow a special diet while on the meds and we will have to keep Cully far away from germs. This will not be easy as Cully puts EVERYTHING in his mouth. It will mean we will need to regulate where we take him which is very hard right now. We just want to do everything we can with Cully right now and have him absorb everything... Many other children have been on this treatment before us and there are so many out there that can help us learn what to do and not to do, and the team working with Cully will no doubt be certain to give us much more information as things get going.

 Cully continues to increase in his seizures but also increase in his development. That's NOT how this thing is supposed to work according to the journals, doctors and the understanding we have gained of IS. I'm not above understanding that everything can change at any given moment but Cully is doing very well to learn so many new things each day and mum and I make a good team. We are going to do all we can to take advantage of the time we have in teaching him not just words and such but even more importantly to act and react appropriately.

  The patients project is going very well. Deep breaths and relaxing when upset. Dad can not even do this well. Cully's words are being used very well too. Please, thank you, OK, no thank you, hot tub, outside, airplane, puppy ... A few new words too like IPad, cool, belly, hey, and many names. Another thing he is starting to master is the understanding of NO. Only two days into this but speaking to him with a softer voice and talking to him with a "Cully I said no, do not..." seems to be working where as before a no would not even be heard by Cully.  Not 100 % but darn good.

 I am going to put a video clip together soon and post it here showing just what the IS seizures are. They are surprisingly mild to what is in most peoples mind and it is hard to imagine how terrible these little things are. Not much more than a little nod or twitch yet these things take away our babies.





 

Daddy's Post

I figure I can be selfish and post about me once in a while.... This is my day so far...

It is only 8 in the morning and I am still in bed.

Sawyer crawls into bed around 6am to tell me about his zombi dream and to snuggle. After his eyes closed I walked to the other side of the bed to snuggle with Jewels for a moment but as always, the slightest touch between us always wakes the beast and a call for Mommy sounds from Cully's room. The time..6:20 am.

 Cully slept for an amazing 9 plus hours. This is very rare. I went and got Cully and led him to our bed and there he found his "YourYer" and mommy. The four of us snuggled under the covers for a minute before the two boys started wrestling and playing. Cully then used his words very well and asked mum for help opening the door and he wanted to eat eat.  And off they went.

Cully returned to my bed and climbed up to snuggle tight with me. He knew his seizures were on their way and he just wanted to be here in my arms. He laid right on my right arm and my chest for just a moment before they began and besides the twist and pulls of his seizures he did not move at all. Five minutes later the seizures are over and Cully is on his way back down the stairs for more waffles.

 I grab my iPad and quickly check for updates on little Will, a boy with IS that just had his brain surgery yesterday.

 My wife brought me a glass of freshly squeezed orange juice and a bowl of oatmeal and fruit and here I sit in my bed listening to Thomas Newman on my IPad and sharing the first two hours of my day on this blog.

  It is 8 am. What a boring post huh?  But I love it. Even with all that is certain to happen today I am happy here. Before all the children yelling, the bickering and chasing Cully... I'm happy.

  So now all we need is a good Cully day.

Changing the focus for a bit

 Cully continues to have a reduction in his seizures these past couple days. We are continuing the Vigabatrin treatment right to the end and we still have hope.

 Today has been a "melt down" day. We have Cully back from the hospital and it seems that only his attitude has been an issue thus far. He has drug mum down and has truly shown us his dislike for not getting his way. This is the autism.

  We are focusing on his autism and sensory disorder for the moment. His occupational therapist AND his special needs therapist both visited today together and we all sat and worked on new techniques with Cully and are getting ready to attend a program that will teach mum and I how to work with Cully as he learns in this great program for special needs.

  Making great progress on our "patience" project. When upset I only have to tell Cully "PATIENCE" and he will stop and take a deep breath before having a complete melt down. Not quit the outcome I was looking for but you can see just how smart my boy is. And we will connect the deep breath with stepping back from the problem and relaxing a bit. I have no doubts at all. But it will take a little time to get there.

  Still doing very good on using the potty. Not perfect mind you.. which is why I am currently draining the hot tub...   OOPS !  thanks Cully........

   We have a truly fantastic family in Detroit for their sons second and third brain surgery. Will's mother has been a great help for many families going through having a child with IS. She posted today a great description of what IS is all about by posting some pictures of EEG read outs.

First is a normal EEG.

 And second is an EEG of a child with IS.AND THIS IS EVEN WHEN THE CHILD IS NOT having seizures.

 An EEG shows electrical activity in the brain.  And this is why we need to stop this right away.

It was these two pictures that finally got me to understand what exactly is going on.

Back in Children's Hospital

  Cully is having a lot of seizures again and he has maxed out on his dosage of the Vigabatrin drug.  Looks like our miracle drug couldn't do the trick.

  Mum and Cully are at the hospital and Cully is all wired up for the night to try and get a better map of the activity in his brain. The last EEG was difficult to read as Cully was having too many seizures. The Dr would like a better EEG with less extreme seizure activity in order to have more information for the purpose of Cully's brain surgery. I am doubting this EEG will be much better with the number of seizures he is having. From the moment he arrived in admitting until the moment they left to the room Cully was having seizures.

  Boys and I are having a guys night.Red Robbins and a little computer time.

More later....

Hanging in there..

Cully is nearing the end of his Vigabatrin treatment and we are still in the game. He has slowed down again in number of seizures since the last increase. Yesterday was a good day all around.

 We are crossing our fingers that he will keep those seizures to a minimum so that he can get in and get that EEG that Dr Chugani needs. We are most likely going to get this done in the next few days and will be driving anywhere needed to get it ASAP.

 Cully has a new App on the IPad. He is creating his own music with drums and piano. I will have to get some audio/video posted of our little musician. Perhaps music is going to be his thing?

  We met up with some of the family at my sisters house this weekend and Cully went swimming. And he did GOOD. With a life vest on he walked right off the steps into the deep water and did the doggie paddle. Over and over again. During the entire visit he had just a normal day without any seizures that I saw. Some tiny ones mum noted but he was just having a great day.

 Thats all the news today. I'm sure the next few days will be interesting and updates will be posted. I hope this new webpage will be easier to use and here I can post more videos pictures and such to share.

  Please sign up on this page to join Cully's Army.  He will send you updates and an occasional picture to your email if you do.