Had another seizure this morning but we will give this medicine a little time to get into his system and start working.

New medicine

Jayen is still having seizures periodically so we added zonegram today. Hope this one helps!

Heading home!!!

Got to talk to Dr. Frost a little more today. He let us know that the things we saw were seizures. It makes me feel a little better knowing I'm not crazy and making things up. MRI and spectroscopy results came back normal. The MRI did show that the seizures are now coming from the right side of the brain rather than all over. This opens up a few more medicine options. Still waiting on the results of the genetic testing.
We are still uncertain as to what the future holds for Jayen. We do believe that as Jayen's brain grows and matures his seizures will continue to change. We will probably have to go back to Minnesota and do another EEG. But for now we can bust out of this joint and pick up Dalan. We miss him horribly and can't wait for all of us to be home together.

Friday the thirteenth

There must have been a lot of people praying for a seizure this morning, but they should definitely stop now! Jayen had a seizure this morning!!!! The docs saw it on video and on the EEG. It actually starts before his laugh and is undetectable and lasts longer than what we were thinking. Dr. Frost had to go to a meeting and didn't have a lot of time to talk today so hopefully he will talk a little more tomorrow. Jayen got his electrodes off around 1 then was told he had to keep a towel on his head until he could take a bath so the solution didn't get in his eyes. Nice they told us there were two other kids who had to take baths before him. Try keeping a two year old from taking a towel off his head while trying to play. When it was finally his turn the nursing assistant dumped a big jug of water on his head. I thought is was supposed to stay out of his eyes. What a mess! We took a nap while waiting for MRI. They were running late. MRI went well, but once again I had to look into my babies eyes and say so sorry honey. Jayen had to get an IV. He was wrapped in a blanket and held down. Then even worse I had to see him go from a screaming fit to his eyes rolling to the back of his head and him being unconscious. That's when mommy lost it, and I'm pretty sure daddy did too. Propafol really works. And apparently thanks to Michael Jackson, we cannot have any for the ride home.
When Jayen finally came to he was spoiled with popsicles, cookies, and juice. The nurses loved him and his kisses. He was throwing everyone kisses and they were throwing him goodies. He will most definitely get by on his charm!!!
Back at our room we ate a little then found out someone forgot to get his lab work. So once again I had to help hold down my baby and apologize to him. Hopefully this is all over and we don't have to do any of it again!!! That is what we can pray for now.

No seizure this morning. Dr. Frost came in to talk to us and recommended we talk to a geneticist. Apparently Jayen has some facial features that are associated with some syndromes common in IS kids. When the geneticist came in and mentioned they were looking at possible Angelman's syndrome I was a little shocked. I know two little girls with Angelman's and I don't see many similarities with Jayen and either of the girls. Just to be certain they will do a few tests. They will do some blood work and send off his DNA to do a chromosomal check. They will also do another test, called a Spectroscopy, during the MRI that will look specifically at what Jayen's brain is made up of.

Minnesota Epilepsy Group (AGAIN)

We arrived in Minnesota around 2AM plopped our heads on some pillows at a hotel and was so rudely awakened by a bubbly 2 year old. Apparently he got plenty of sleep in the car!
After a well balanced breakfast at McDonalds ;) we checked into the hospital. The moment mommy was most nervous for was finally upon us, getting the wires on. I remember Jayen screaming through the entire process a year ago and having to hold him down. Now he is twice that size and twice as strong. They ended up putting him on a board and strapping him down with a velcro suit. He screamed and cried. Mommy screamed and cried too. I hate when he looks up at you with the eyes that say, "Mommy help me. Why aren't you stopping them? Why are you helping them? Make the hurt go away." And at the same time feeling so helpless. I love you honey and I would never do it if I didn't have to. I'm so sorry!!!

I guess we are going

Matt and I have been bugging the poor ladies at referral managment every half hour to see if we are going or not. Finally at 3:50 we got the word. Matt got off work at 4, we PACKED the car and headed to Sioux City to meet my mom. Between my parents and my brother and sister-in-law Dalan will be kept busy. We really didn't want to leave him and are so heartbroken but we know it would be best. Love you buddy and have a great time!!!

Finally got a return call

After more than a week of waiting for the doctors office to call with a plan we finally have one. I'm not sure if it is one we like or not, but Dr. Frost would like us to go back to Minnesota. He wants us there Wednesday. I responded with an "Are you kidding me?" and a "good luck getting insurance to accept that referral in one business day". Now I have to run around getting our PCM to fill out the referral paperwork, then head to referral management to see if they can process it stat, then if it even gets accepted in time I will have to go to patient travel. That doesn't include packing bags, figuring out what to do with Dalan, make arrangement for Matt's mowing jobs, get snack and things together to keep a two year old busy in the car for 7 hours, and remember my head in the process. I guess I better get busy!!!