What Day Is It?

I was walking over to a funeral dinner this morning with one of my co-workers and we were talking and I looked at him and said...what day are we on? That's what I feel like...that I'm just brain dead!

Yesterday was a busy day for Mr. Christopher. We had heard on Friday that we had been approved for our genetic testing and I was excited. I felt like a dork because when the lady told us it had been ok'd, I started crying. We've been wating since DECEMBER!!! We had the lab drawn and he had a skeletal survey which was over 20 xrays of him form his head to toe. This will look to see if his bones are aging faster than normal or not.

On Friday, I also spoke with the Nebraska epilepsy foundation and ironically enough, the wonderful person I spoke to is an O'Neill native. We talked about what I see Chris do and what we are doing with his meds and what we haven't done and the things that could happen and resources to look in to. It was an overwhelming conversation. There was so much information and most of it confirmed what I have been thinking. Their suggestion was to see a specialist...one called an epileptologist.

We had PT yesterday and Stacey was pleased with his movements forward, but stated that we won't see huge changes until our seizures under control. Since I am seeing 3-4 every day, which usually means there are more you don't see, I have no hope for that to happen soon. She could feel my frustration and agreed that the specialist sounds like a good idea. She was happy with the little improvements he has made.

We saw Dr. Prestridge and she was concerned by our aspiration coming back and our stools and doesn't understand why. Jen (speech therapist) and I had been talking about placing a feeding tube to help him get over the sick humps which we are learning we have severe troubles with. She is still very reluctant to put a button in him and I am happy about that, but it's still frustrating that his lungs will not clear up. She agreed that his lungs sounded horrible. She requested that we go back to Dr. Murphy, the pulmonologist and he will have the final say. he will be able to tell us if it is a concern or not.

So the plan is now to head back to Omaha in a couple weeks for our pulmonology appointment. Then call later this week to make an appointment with the specialist.

Another Scare

This world of epilepsy is relatively new to us and the thing that has been driving me nuts for the past few weeks is that no one has taken the time to explain to me what to expect or not to expect; when to worry and when not to worry; more importantly, when to rush to the ED and when not to.

Tonight we were at my sister-in-laws wedding waiting for supper when I noticed that suddenly Chris was warm. It wasn't 20 min later and he was seizing while sitting on my lap. It was terrifying feeling the whole thing. I know I'm a nurse but we don't deal much with seizures. So I had Jason run and get his sister, Jess (not the bride), to help me assess him (and moreso me!). In the mean time, Jeff and Jason witnessed another one and then he had yet another seizure where he zoned out.

We scarfed our food and then high-tailed it to the nearest Walgreens but before we could get there he had another one. I texted one of our Docs back in O'Neill and he said to take him in. Believe it or not...we got right in. This trip to Children's ER did not entail a 3 hour wait in the waiting area and me in tears! :)

They took us straight back and had him assessed and on our way to being treated. His blood pressure was through the roof, his temp was 103.4 via his ear and he was still postictal (unconcious state post a seizure). He was so lethargic and completely out of it.

A resident came in and was worried about the temp of unknown origin and that we should straight cath him (catherize him to get a urine sample) and if that was negative, we would do blood cultures. I was a little like...WHOA!!! He said his lungs sounded clear although I could feel his chest rattle and I was pretty sure he aspirated this afternoon.

THey gave him a dose of motrin and we waited and waited and waited. About 90 min in to our visit or 2 hours post initial seizure - he came alive!! He was up and down and around and messing with the bed and all giggly. Then we felt retarded for going to the ED, but his temp was still 101.2.

FINALLY the Doctor came in and she was amazing. She answered our questions about seizures and how things that are abnormal to most kids are somewhat expected or "normal" for epileptics. She gave us things to watch for and how to treat and suggestions. She also gave us the option to do lab and CXR or go home and sit on him.

By this time he had a snack and downed 1 1/2 cups of water and was flirting with the doctor. We chose to bring him back to Curt and Cindy's since she had given us the information we had been looking for. She also stated with my background that she was comfortable sending us home.

Since our visit he's been very restless and the fever is creeping back. I worry about the fever as this is our 2nd fever in less than 2 weeks and we aren't real sure as to where it's coming from although with his cough, I'm curious as to whether his lungs will start to sound crappy again.

Of course I had to tell Jen of the possible aspiration and her thought was that he may have aspirated because of a seizure which throws us in to another whole new ballpark.

I still feel like we are wandering aimlessly on this journey of trying to give our son the best care possible. I had heard about the epilepsy clinic at UNMC and it's rave reviews, but unfortunately they turned us down due to his age.

Our journey is beginning yet again. The best thing out of tonight was that Jason was with me. That helped the stress level in and of itself.

Mass

I remember in high school having the Archbishop come to school and say Mass for something. It was shortly after the church allowed girls to be on the alter as servers. My job was to hold head dressing he wears. Of COURSE my Grandma and Grandpa Shoemaker were there and after Mass was over, Grandpa came over to me and was crying because he was SO proud! All this time later I can still see his face and chuckle about it.

Andrew had his second Mass today and Grandma and Papa Shoe came. Andrew was the proudest candle carrier ever I think! The day went on and nothing was said until Papa Shoe called to tell Andrew tonight how proud of Drew he was.

I just had to smile. Not only is a great-Papa Shoe crying somewhere. But Papa Shoe was pretty proud too! Can we say like father like son?

Here Puppy Puppy.

The other morning I was playing catch with Matthew and I was being mean by throwing it over his head. After doing this about 3 times he looked at me and goes..."Mom, I'm not a dog!!" Can't get one past him!

Epilepsy

I haven't written for weeks now because it is has been lots of processing. A few days after we were told that Chris had seizures and that we were to start him on meds, we returned to Yankton to have Matt eval'd for the same. He had an EEG done and I'm excited to report that it was normal. I'm pretty sure Mariclaire could hear me screaming from excitement at the elementary school!! The same day we were up for Matt's testing I spoke with Dr. Isburg about Chris. He stated that he was having moderate activity and his were generalized absence seizures. His carbatrol level would be checked in a couple of weeks nd then we would go from there. Then I posed lots of questions, how do we know he's having them, what do we do if he has one that is evident, will he grow out of it, will it get worse, will it effect him cognitively. I also asked if he was calling it Epilepsy and he said yes, but I have since learned that seizure activity and epilepsy can somewhat be interchangeable. The only thing he answered was that it is too early to tell if it will get worse or better and as far as cognitive, only time will tell. This last week was very rough. Chris was sick and while he was running fevers he had some seizures where he was tremoring with him and his eyes were rolled in the back of his head. Then one night I woke up to him with a mouth full of blood and a cut on his lip and one on the inside of his mouth. Not sure as to whether that was a seizure or him running into the side of the crib, but it was scary no matter which one it was. Since he's gotten better, they have seemed to go back to what they were before and in speaking with one of our physicians in town he questioned as to whether his threshold would be lessened since he already has seizures. That is on my list to talk to Dr. Isburg about this week as I have to find out if we need to tweek meds or not. On the 14th of March we visited with genetics and they looked him over high and low. Dr. Olney, the geneticist said he was too cute to have something wrong and I completely agree, unfortunately, something is off. After looking him over head to toe and taking pictures of him from head-to-toe the plan was made to do a few tests on him that would include a microarray which would see if he had extra genes or was missing something. They would also test for Fragile X, which I'm sure he doesn't have and Sotos syndrome. The category they are looking in is kind of like the gigantism category. They will also do a scan of his bones to check for his bone age to see if his bones are aging faster than they should. We don't know when we will do the genetic testing as they approve it through our insurance company before they do the testing. His swallowing is doing okay. When he was sick we had lots of aspiration problems and that is about the only time I wish I had the feeding tube option because he can't swallow effectively. We are looking at starting therapy this summer, however, with the epilepsy diagnosis on board we are not sure as to whether or not it is a possibility. He's cruising around everything and does descent walking holding someone's fingers but he really struggles with keeping his core engaged and therefore wobbles. I bought him new shoes the other day and he wanted NOTHING to do with them. He would stand, wouldn't move, he just sat there and cried. It was pretty darn cute. So, we have returned to status quo after our last illness and continue to get over the cough, but those can last for weeks. We head back to Omaha in a few weeks for a visit with PT and to see Dr. Prestridge.