4 more seizures today. Increased his Topamax to 4 pills at night and still gradually increasing his Lamictal.

Longest 5 minutes of my life

We were on a good roll. 11 days seizure free. I was so excited and felt like we were on such a great path. Jayen was acting like his old self again. He was smiling more, laughing more, walking more, talking more, and just happy more. We kept telling ourselves that coming off the Depakote was such a good thing. Now I am not so sure about it.
Tonight Jayen was drinking his bottle and calming down for the night while Daddy and Dalan were holding him, when he had a cluster of 5 seizures. It was the first time Dalan saw one of Jayen's seizures. About ten minutes later Jayen started another seizure, but this time he didn't come out of it like he usually does. This was lasting longer and longer and longer. Daddy tried to get his attention in many different ways. He was talking to him, rubbing his belly, putting objects infront of him, moved him, but still no response. I laid him on the floor and continued to try to get his attention while Matt ran to get the diastat. I was hoping and praying we wouldn't have to use it. After a little more than 5 minutes he came out of it on his own. We did not use the diastat but are still debating whether we should have. What a scary moment! We have never had a seizure last longer than 30 seconds, now we are in a whole new ballgame. They are lasting longer and looking different. It started with the jerk and freezing like usual then he arched his back and was kicking his feet. Matt said it felt like he was trying to kick out of his arms. It then sounded like he was laughing. We noticed at this time that only half of his face was smiling. His left was moving, but his right side was frozen. While on the floor he continued to be unresponsive. His eyes were rolling to the top and he was moving his head from side to side. Around the five minute mark, just before we were ready to administer the diastat, he came out of it on his own. What a scary, horrific, and unforgetable 5 minutes that was. I hope it NEVER happens again.

Thank you Dr. Toth for calling me back and talking us through this. What are we going to do without you?

Neurology/GI

Meet with Dr. Pavkovic and Dr. Zapata today. We were so excited to talk to Dr. Zapata and see what we can get rid of as far as medicines and formula. After meeting with him we decided that we can come off of both the omeprazole and the soy formula. We just need to do one at a time. Matt and I talked about it and we are going to get rid of the omeprazole first. There are no side effects from being on formula so that can wait. What great news to get rid of one more medicine and be able to add in a bunch more food!
Dr. Pavkovic was updated on Dr. Frosts plan.

Saw Dr. Toth today. Just updated him on everything that is going on. He set up our labs for us and we are ready to go. We will really miss him

Easter

Even though we just got home, we turned right around and headed to grandma and grandpa's house for Easter. We stopped to meet baby Grant first! Dalan didn't want to give him back. He got to hold him and wouldn't let go. Maybe he will be that excited when we have another. (Not anytime soon though!)

We went to a few Easter egg hunts and the boys got way more candy than they could and should ever eat. Guess mommy should help them out. Don't want it to go to waste!!
We were all dressed in our best and got some good family pictures. It was a nice day to get away from all things medical. It was nice just to enjoy the day and not think or worry about anything.

One year ago today Jayen was diagnosed with Infantile Spasms. What a crazy journey this has been and I'm sure will continue to be. Love you honey!

Going Home

We finally get to go home today! We are so excited to get out of here and pick up Dalan. We miss him! The wires are finally coming off and we get to show off our hats and fun outfits that don't have buttons up the front. We get to smell the winter air (yep it was snowing here!) and see the sun shinning. This is going to be a long drive home but we are ready for it. Hoping that we have finally found a good mix of medicines that will keep Jayen seizure free. I know this is going to be a long journey but I think I am a little more prepared now.

Getting ready to take all the wires off!

Although we were excited to get the wires off, it was not a fun process!

First real bath in over a week!

Finally get to wear our cool hats!

Dalan I missed you!!! They held hands and shared oreos almost the whole way home.

They snuggled for a little bit.

Then we asked who wanted presents!

Jayen got a new basketball and Dalan got "Red" from the Mall of America.

Well I'm not sure what we have all answered being here. I keep asking myself what good came out of this. I am happy that we are off of one more medicine and that he doesn't seem as "drugged" as he did before. I am happy that we got a seizure while hooked up to the EEG. Beacuse of that we found out that he has myoclonic tonic seizures. But was it all worth it? I keep asking myself and I keep getting different answers. (Yes, I am talking to myself and answering myself!!)
I feel like we came on 4 medicines and are leaving on 4 medicines. We came having seizures and are still having seizures. We still don't have an underlying cause and I'm not sure we ever will. I wish we could have gotten him on a better dose of medicine before we left too. I'm so scared and nervous that we are just going to be chasing meds again. I don't want to call the doctor in a week reporting we are still having seizures and for him to just increase meds. I don't want to go back to that feeling of always increasing or adding meds.
I have so many concerns and thoughts running through my head. I went back today and started reading some of the first posts. I also started reading more of the information about Jayen's original diagnosis of Infantile Spasms. I remembered reading about how catastrophic this really is and wondering where do we fit into all these statistics. Are we going to come out of this as a pretty healthy normal kid? What will school be like? What will he be when he grows up, are things unattainable now?
We are hopefully leaving tomorrow with a few plans in place. We will be leaving here on 75mg Topamax twice daily, 2 mL Klonopin twice daily, a B6 vitamin twice daily, and a new increasing schedule for the Lamictal.

YIPPIE!!! A seizure on wires and video

Last night Jayen had a cluster of seizures. Mommy was so excited she started crying and high-fiving daddy. Yeah, yeah. I'm such a dork. The doctor laughed at me this morning saying he could see my excitement in the video. Jayen's seizures are classified as myoclonic tonic seizures. We started him on a B6 vitamin and are working with our neurologist and a neurosurgeon to figure out the best medicines for him to be on. So far we have increased his Topamax from 60mg to 75mg twice daily and added the B6. We are still trying to figure out why he is having the irregular heartbeats too. Hopefully cardiology will have some more answers tomorrow.

Nothing new today. Still just waiting for a seizure. Talked to the doctor a little more today. He answered a lot of questions. We really don't have a whole lot of answers until he has a seizure. I do feel that our time here is not totally a waste. We have taken Jayen completely off the depakote and and weaning the klonopin.So we have already simplified his medicines and he doesn't seem as "drugged" as he did before. I think we are going to try to give it a couple more days. PLEASE PLEASE PLEASE help us pray for answers. God has a plan and we are trying to understand it. We are giving it up to him and hope he leads us in the right direction.

Still Nothing

We have decided to go down on the depakote again. He will be completely off the depakote tonight. We will increase the lamictal as previously prescribed by Dr. Pavkovic in Omaha. We are just hoping and praying that we can catch a seizure. Mommy really needs answers. I hate not having any answers, but even more I hate not having any questions. I just don't know what to do. I am at a complete loss. Where do we go from here? Where is here? What is Jayen's plan for life? I feel like I can't help him get where he needs to go in life if I don't know where he is supposed to be going. Just going crazy today. REALLY want a seizure and answers!

Crazy Wish

Last night Dr. Frost, our neurologist here at Children's St. Paul, decided to decrease Jayen's depakote to see if that will bring on a seizure. Nothing as of yet. Mommy and daddy are trying to recreate the situations at home when Jayen is having seizures. We made Jayen walk for an hour today. He took puzzle pieces from Mommy and walked them over to daddy and put them in their place. He also did some independent steps from the wall. We are still hoping and praying for answers and the only way to get them is to see a seizure while on the EEG. Crazy thing to wish for! Jayen walked to daddy and beat his previous record. He can now take 7 steps from the wall.

24 hour EEG

We made it to Children's St. Paul yesterday. Jayen was hooked up to an EEG and they began recording. We are hoping and praying that he has a seizure as soon as possible. I know kind of crazy to wish for, but the sooner he has one the sooner we have answers and can go home. We found out after we got here that Dalan is not allowed in the hospital. Because it is peak flu and cold season, no one under the age of 5 is allowed to visit the hospital. Matt met my mom half way so Dalan could stay with them until we can get him. No exactly sure when that will be. This is just a waiting game until he has another seizure. I guess we will just HURRY UP AND W.A.I.T!

We packed the car and are on our way. 6 hours with two kids, we will see how this goes!
Minnesota or bust!

After being on the phone and bothering every single person I could get to answer the phone, we finally got our referral to somewhere that would take us within the next month. We are headed to Minnesota to the Minnesota Epilepsy Group. Kind of nervous but more excited. Wish us luck!

Smooth, yeah right!

Of course, why would anything go smooth? Found out today that our insurance request for the Mayo clinic was accepted!!!! How exciting. That is exactly what we were hoping for. However..... when I called to schedule an appointment I was informed that they are booking out for June and July right now. I can't wait that long. I can't have my baby going through this until then. Again, I have been on the phone all day trying to figure out what to do. I called Tricare to see if we could just switch the referral to the Minnesota Epilepsy Group. That was denied because of how the referral was written. I can have the doctor resubmit the paperwork changing the destination or depending on the urgency have the base call Tricare and request it to be changed. I also have to beg him to write the referral as inpatient rather than outpatient as they will keep us there for a little bit and run all the tests at once.
I'm thinking this is going to be a headache. I hate putting Dr. Toth out. He has been more than accommodating and I don't want to cause any problems. He also has to write a summary of Jayen's history so they know what kind of tests to order. We basically have to write a resume asking to be accepted to either one of the clinics (Mayo or Minnesota).

I am just so ready to have my baby back and seizure free. I hate ruffling feathers, but I don't know what to do. We need to get things figured out and quickly. We know it is going to take us at least two weeks to get into anywhere, so the longer we wait to figure out where the longer it will be before we have any answers.