I was told that the Topamax would decrease Jayen's appetite, but I can't believe it should completely stop it. He hasn't eaten much at all. I got him to eat some of a hot dog and some cheetos for lunch yesterday, but nothing since then. He trew up last night and again today and has been pooping through EVERYTHING. He has had 3 baths in the last 12 hours.
I am taking him in to see Dr. Toth today. Hopefully he has some answers or suggestions!

We went to therapy today to try to keep our routine and to get out of the house. Jayen was upset but actually did a great job. He stood independently for 18 seconds and even took 4 steps away from a wall to me. He is making great progress and I think the SMOs are helping a lot.
Jayen was very tired after working so hard. I tried laying him down when we got home when he had three seizures in a row. I thought the drugs were supposed to work!!! Well neurology said to up the Topamax and see what happens. I just want this under control. I hate seeing him go through this.

Hospital Stay

We spent the night in the hospital. It was a late night and a very early morning. Jayen woke up at 4am and wouldn't go back to sleep. He was so tired but you could just tell he didn't feel good. About an hour later he had another seizure. Poor little guy. I just don't know how to make things better.
We had the EEG around 9:30 then waited to hear from the neurologist about how it read. We were told they didn't see the hypsarrythmias that are associated with the Infantile Spasms but they did see that he was having irregular spikes. He had potential for seizures was the answer I was given. Not sure if that meant they didn't think he was really having seizures or what "potential" meant. The doctors are confident that we should be able to control the seizures with prescriptions. We are going home with two prescriptions; Topamax and Depakote.

Daddy left again and guess what happened

Daddy left on Sunday for Mississippi. He is attending the NCO academy. Just as before, Jayen decided to have a seizure today. Two days after daddy left. We were seizure free for 9 months. What happened?
After therapy, I took Jayen with me to run a couple errands. I was trying to him out of the car seat when we got really stiff. I wasn't sure what was going on, but I knew it wasn't good. I called neurology and left a message for someone to call me back. Two hours later I still hadn't heard from anyone. I called again and as I was on the phone with a nurse, Jayen had two more seizures. The nurse talked to the doctor and called me back. In the meantime he had another one. I was advised to take him to the emergency room and have them page Dr. Pavkovic. We waited for quite some time to be seen in the ER. After seeing the ER doctor he called Dr. Pavkovic and they decided to send us home with a prescription and to come back for an EEG as previously scheduled. That was in 2 1/2 weeks. They wanted me to take my baby home and wait. We didn't have any other choice but to go home. I no more than pulled into our driveway and started to unbuckle him again and he had another seizure. I called neurology again and said I can't wait. We were told to come back and they would admit Jayen and start him on Depacon. It is an anti seizure medicine that can be given intravenously. That way we wouldn't have to wait for the oral medicines to get into his system.
We started the IV medicine around 10 and at 10:30 Jayen had one more seizure. It was a long and scary night!

Called neurology today. We set up an EEG for March 7th to see what is going on. Still not sure what these movements are, but they are different. They are just not quite right.

Funny Movement

Jayen was running errands with mommy today while daddy and Dalan were packing. Just before getting out of the car Jayen kind of started acting funny. I wasn't sure what it was, but I knew it wasn't right. I think I am going to call neurology tomorrow and talk to someone about it.

More teeth! Jayen has now gotten all of his first year molars. Thank goodness! He had one that looked impacted and was really bothering him. I'm glad we are through that set. Can't wait for more! ( ;

Husker SMOs

Jayen got his SMOs today. He was not happy about getting them, mainly he was not happy with the stranger trying to put them on his feet. I am pleasantly surprised at how hidden they are under his shoes. When we ordered them I had to pick out a design. I wasn't sure what he liked now or would continue to like a year from now. I picked out a Husker theme knowing we would love them now and a year from now. I think it was a great choice!
Jayen does well with them on but hates when you play with his shoes or the orthotics. I hope these work. Can't wait to see him stand and walk!

First Haircut

Monday night dinner at Gina's house turned into a quick haircut. Jayen's hair NEEDED to be cut. We had tried a couple times to go see Ms. Becky on base. That is who does Daddy's and Dalan's hair, but every time we went there she was too busy. We were so excited when Gina could do it. We love how she does mommy's hair and new she would do awesome with Jayen's too. Thanks Gina! He looks like such a little man now. (And exactly like cousin Hunter!)

BPS speech evaluation

I have been concerned because Jayen hasn't been saying many words. He says dada ALL the time, but only occassionally says mama (when he is hurt or wants me to hold him).
We talked a lot about how children often focus on one area at a time. Since we are working on walking and more physical things, the oral motor is kind of waiting in the background. After meeting with the speech therapist we decided to keep her on a consultant basis. We won't see her regularly but we will be able to contact her and get her opinion/advice.
I think we will do our speech evaluation at PTC and get a second opinion as well.