E.E.G...

This morning we went to Mary Greeley Hospital in Ames and RJ had another E.E.G. This is the second one that he has had done since the seizure's started. The first one was right after his grand mall, so they weren't able to monitor him having one during the test. This time we were more lucky you could say. They started off the procedure with having him open and close his eyes a bunch of times. Then they had him breathe deeply trying to hyperventilate for 3 minutes. They then said for him to close his eyes and try to sleep for 20 minutes, and I bet after maybe after 5 minutes he went into a seizure. It was very very strong and he hurt his hands from clutching them together so hard. His jaw is very sore from his mouth being clamped shut and he said his chest feels now like it is being torn apart and it feels like he pulled his shoulder out of socket. My husband has been through so much. I got to sit next to the hospital bed while they did the e.e.g and I was crying when it happend. I didn't know if I could touch him or talk to him in case that might mess up the testing, but once it was almost over the tech pryed his hands apart and said I could hold his hand. It seemed to calm him down a bit, but he was still having the seizure. I HATE to see him go through this. I wiped away my tears and didn't let him see that I had been crying, that would have made it worse.
I know that he isn't going to die but that is my worst fear and what I think about everyday. I am just waiting for that next big horrible thing to happen and have him taken from me. I can't live without him and I don't want to raise our girls without him. He want's so much to just be normal again. I just keep telling him that he will be ok and we will figure this out.... He is scared and so am I.
Hopefully we should hear from the doctor this week on the results and then we will figure out what to do from there.... I am keeping my fingers crossed for an answer or a miracle....

20 months old.........

Can't believe that Lucie is 20 months old. I know it's a couple of days late to post this but we have been pretty busy. Lucie is doing great and loves hanging out at home with her sister and Daddy everyday while Mommy goes to work. She is definetly a daddy's girl. Her new favorite words are "All done" and "No". She is doing pretty good potty training, and working on her ABC's. Her words are starting to be a little more clear. She hates and I mean HATES riding in the shopping cart anywhere we go, which in turn makes it soo much fun for Mommy and Daddy to try and shop. At the end of the day she is very healthy and happy and we are thankful everyday for her!

State Fair Pictures

I have always liked to have old fashioned pictures taken and we have the opportunity to do it at the Iowa State Fair this year. We had a great time and the girls loved the animals. We couldn't stay very long because RJ got pretty tired fast. The weather takes it out of him really easy. We did enjoy our time there. Gracie and I petted the horses and Lucie loved the sheep! Best of all I got my CHEESE ON A STICK! It was delicious!

A little Farkle fun!

We spent this past Saturday evening playing Farkle with Cory and Katie! With RJ not really being able to be outside in the extreme heat and sun right now it really helped pass the time and we were able to have some fun! We grilled out and then played games all night! Our girls Brogan, Gracie and Lucie played their own game of run around the house and scream at the top of their lungs! It was pretty cute, even though their Dads' didn't think so!

By the end of the night the girls were exhausted and we all had a great time!

P.S.

We also got a text saying that our good friends Nick and Kara sold their house in one day after putting it on the market! Congrats to them and we can't wait to visit them at their new and CLOSER house!!!

Happy 8th Anniversary to my hubby!

We made it to year number 8, and still going strong!

RJ update.....

So we went back to the doctor last Thursday morning to find out about changing RJ's medication. He had been experiencing the side effects of Keppra that made him act differently than he normally would. He was cussing like a sailor and was becoming extremely argumentative about everything. He was also becoming very confrontational and was speaking without a "filter" so to speak. After his behavior was increasing dramatically I got ahold of his neurologist and he said that we definetly needed to switch his medication. We have to watch for these signs with every seizure medication since they deal with the brain. Most of them have highly suicidal tendencies so we need to be careful and make sure he is acting ok.
So we started with Dilantin that gave him the severe reaction, to Keppra which made his behavior change negativly, to Trileptal which we are hoping will work out. The bad thing about all of this is that while switching all of these medications he is prone to having more seizures until the medicine gets built up in his bloodstream.
The worst thing is that since his reaction to the dilantin his skin has become highly sensitive to sunlight and heat. He has been ordered by the neurologist to only be outside for 30 minutes at a time and then he needs to be back in the house to cool off completely before he can go back out.
Slowly we are working on things, it's all going to take time......

Summer Update....

This is for everyone who is disapointed that I haven't posted anything for awhile. Obviously we have been a LITTLE busy in the last month or so.

RJ has been having a lot of problems. It started in early May, he was having these "episodes" of feeling really sick, dizziness, loss of vision and hearing, and like a muscle tighness in his whole upper body. These episodes would last 2-3 minutes and then pass and he would be very tired afterwards. They started out every couple of days, then progressed to everyday and then to a couple of times a day. He went to his Dr. and he thought maybe he was having the start of migranes so he prescribed medication for them. A few days later I took him to the E.R here in Boone because he had a "episode" that lasted longer and kind of passed out at work. His boss called me and I went and got him. After a lot of tests everything came back normal and they sent him home. The next morning he had a grand mall seizure on Friday July 1st. He spent a night in the hospital and they started him on Dilantin for his "episodes" which we discovered were "Petite Mall Seizures". He was very tired the next week and we ended up back in the E.R in Ames because he had 3 of theses petite mall seizures before noon on Friday the 8th. They discovered his Dilantin level was almost undetectable and up'd his dosage and gave him a "loading dose" of 700 mg in the E.R. This was why he was still having seizures because his medication level was too low. Sooo.... two days later in the evening of Sunday the 10th he was still complaining of a major headache. He had a headache all weekend long and nothing was helping it, so I got him some Excederin. He took it and about 20 minutes later he was broke out in a slight "heat rash" or so we thought. Not thinking that much of it, we went to bed only to wake up in the morning to the rash being a lot more red and his face was pretty swollen. We ended up back in the E.R. that morning (Monday) to discover that he had a drug reaction to the dilantin. They said it was one of the worst reactions they have ever seen there with Dilantin. They quickly got him on steroids and some other meds to help with the rash, and switched his seizure medication to Keprah.

* In the meantime while all of this is going on, we were trying to get him into a neurologist and everywhere we called nobody could see him until August 11th and that was in Des Moines.*

The E.R. Dr. in Ames called in a few favors and got us an appointment for Friday July 15th with Dr. Acosta in Ames. The next 4 days were MISERABLE for RJ. The rash spread to his whole body and he was so itchy. Nothing relieved his pain or the itch. The rash turned from small spots all over to one major mass that looked like a very bad sunburn. He was burning up to the touch but he was shivering because he said he was so cold. I hope he never has to go through that again. He had a lot of sleepless days.

We went to see Dr. Acosta and after much review and testing he determined that RJ has some Temporal Lobe Damage that was caused from his Car Accident in February. He said that it can take months for symptoms to occur. He believes that with the right medication over the next couple of years, they can quite down the damage and it may heal itself. The medication should stop the seizures and allow it to heal.

That is where we are now. Everyday is something new and RJ is doing ok. He is still having some "petite mall seizures" but they said he might until they can "tweak" his medication just right. It is a very frustrating for us both. Every now and then he can't remember what he is doing, or it's hard to focus on things, and every now and then he mixes up his words. Hopefully the medication will help all of this. Today is the first day that he hasn't felt "dizzy" so that is good. I have a lot more to add to this, but for now that is what I can write! Pictures will follow....

Oh and to top it all off he has lost his liscense for the next 6 months due to his grand mall seizure, which in turn he has been put on short term disability for the next 6 months until he gets his liscense back and gets his medication straightend out so that he isn't having seizures.. Great...