night frights

Matt and I have been joking around wondering what could possibly be so scary in Jayen's life that would cause him to have nightmares. I know he has seen Monsters Inc., so maybe it is Sully. We have been seeing Jayen's night frights since about the time we started decreasing his Klonopin. Or maybe when we started Melatonin. I don't know anymore. Trying to keep his decreasing schedule for the Klonopin and his increasing schedule for the Phelbamate in my head is enough to make it spin and fly off into the air like a helicopter.
Matt slept with Jayen the last two nights to see what was going on. Jayen was constantly tossing and turning, crying and laughing, and hitting in his sleep. He would periodically open his eyes then fall back to sleep. We just don't know what to do. I will try to get ahold of Dr. Frost's office tomorrow and see if they have any ideas. I think tonight we will not give him the melatonin and see if that helps at all.

One down, one up!

Today we are completely off Klonopin. We have had quite a long run with you and we are so glad to be giving you up! We talked to Dr. Frost's office today and we will be adding Felbamate as soon as we can get some baseline labs done. With the new medicine we have to watch his kidney functions and his bone marrow. SCARY!!!! I guess we will go back to doing routine lab work. (As if I didn't have enough driving around to do)

Ms. Vicki

Today was the first day Jayen missed school because of a seizure. I have never really taken the time to think about how his seizures will affect him and his schooling. I kind of knew about it in the back of my mind, but never took the time to think about it fully. I think it scares me too much!
We called in to school at 7:30 when the secretary get in. Ms. Vicki is so wonderful! I have a feeling we will get to know her quite well. At least over the phone!

Decreasing Klonopin

Started decreasing the klonopin this morning. Hoping this doesn't trigger more seizures like the last taper. We tried right before Christmas to taper off of the Vimpat and had a horrible setback. Once we are off the klonopin we are probably going to add Felbatol. That is one of the possibilities and the one that Dr. Frost wants us to start with. Let's see how this goes!

First Day of Preschool

We somewhat successfully completed our first day of preschool. If you count the email I got halfway through the day saying Jayen broke down when they tried to change his diaper so they didn't change it successfull! I just felt like the whole thing was way too rushed. We had his transition meeting on Monday the 7th and he started school on the 8th. I haven't received a handbook or anything about classroom policies or procedures. I just feel like there are so many unanswered questions and that they really didn't get a change to know Jayen before I dropped him off with a bunch of complete strangers.

 

Thankfully our wonderful services coordinator volunteered to go to Jayen's school and check on him and hang out for a little bit. I think it made Jayen feel good but probably made mommy feel even better!

Remember, "I love you Buddy, and ALWAYS do your best!"

Kissing hand

Just read THE KISSING HAND to Jayen. He has his first day of school tomorrow and I hope he takes his kissing hand with him. I know I will need mine. I balled just reading the story. Happy first day of school buddy. I know you will move mountains!!!

After the holidays

We have called Dr. Frost a few times the past couple of weeks, but were told each time that we would make adjustments "after the holidays". Well it is now after the holidays and I am not hearing anything back. Jayen had a seizure on Tuesday. I called on Wednesday, Thursday, and was told I would get a call back after the nurse talked to the doctor, still haven't heard anything. Guess I'll call again on Monday.