Wednesday, July 14, 2010

Too Much Fun

The circus came to town, and the big top was in our house! There were 15 people here at once, all for my brothers wedding. Cole LOVED having other kids around and was especially thrilled to have grandpa and grandma here.

He got so excited and overstimulated that he had 4 major seizures; but, he is sad that everyone has gone home.

The last 30 days or so have just been a blur. Things have gone by the wayside-even important things, like record keeping. I am not sure how many seizures Cole has had since May 6th. I just have to hope I caught them all.

This job thing is giving me stress.

Cole had something called post-ictal blindness that is rare. His eyes were fixed straight ahead and he could not see for an hour after a seizure last week. Two doctors we spoke to said that they have heard it could happen, but no one that they know has ever had it. Another "rare" thing to add to our list. Hopefully, the people at the Moran Eye Center can shed some more light on the connection between Cole's eyes and his seizures.I almost broke Cole's foot doing Occupational therapy. Just a bad sprain, but I still felt bad! He would not keep the wrap on, so he limped for a week or so.

It is official. I need my gallbladder out. The tests prove it is not working right. However, I don't have time for surgery. So, with a leap of faith and a little witch doctor assistance, I have put it off. It will probably have to come out eventually, but I am feeling better. Not as much nausea. Thank goodness! For a lover of food, to have nothing taste good and constantly feel like you are going to throw up is a real bummer. It has helped my waistline though (gotta love the little things)!

The results of Cole's first round of genetic testing came back. He has a "variance". Not a malformation, or a missing gene, just a variance. It could be fine; it could mean something. They don't know, so they have ordered tests on Brian and I. Cole's case will now be sent to a molecular biologist, to see what other testing needs to be done. The spinal tap came back clean and we are pretty sure that AHC has been ruled out.

Overstimulation and light are still problems. Not sure how to fix them....or at least reduce the effects it has on Cole.

If this post feels disconnected, it's probably because that's how things are around here. June was crazy, July was nuts, who knows what August will bring? :)

Thursday, July 1, 2010

Back to Primary

This week has been...interesting.

Daddy left again on Sunday, I had to take Cole to church (something we usually avoid)-so I could teach my Sunday School class. I thought it would be a good idea anyway to have him exposed to other kids and maybe even get overstimulated, so he could increase his threshold. His cousins were due to show on Wednesday, and there was a week of fun ahead. I wanted him to not have to start from ground zero.

Little did I know, he would be exposed to more than I had bargained for.

He acted kind of off for the rest of the day, but that always happens when he is around a bunch of people. Around 3 am, he started throwing up. His blood sugar was low. He continued to throw up every hour and a half or so until 6ish. At this time, he fell asleep and I thought it was over. I headed to an appointment that I really needed to be to, gave the monitor to my sister and reassured her that he would probably sleep until I got back. That, did not happen. He continued to vomit while I was away-Cris, by the way, you are a saint!

I came home and called our favorite pediatrician, Dr P. She agreed with me when I mentioned taking him in to the ED. By this time he had other symptoms; I thought he could be acidodic from the diet, or dehydrated. So, off we went. He received two rounds of fluids and started to do better. That is, after they got his IV in. Four tries and three different people. I think I should just start to request IV team immediately. :) After perking up, the Dr sent us home with the IV saying, "You can always come back". Little did I know.

I took Cole to the car, put him in his car seat, got in and started for home. We didn't even make it to the light and he started having a grand mal seizure. I flipped around, checked in for the second time as I was running by the desk-lovely, and we dashed to our room that we had just vacated. Cole had another small partial seizure in the ED. So, we stayed for multiple reasons and ended up in our old room that we had just been in not even 3 weeks ago.

Cole is doing better. I think that the virus has run its course. You would never know that he was hospitalized just a few days ago. He is running around, making messes and being 2. The only thing I am having trouble with is getting him to eat. After two days of no food, he really isn't keen on stretching his stomach. He has been super needy when it comes to bedtime, because he is afraid people are going to come and poke him. He wants to be touching me while he sleeps and won't even let me take his temperature. I am pretty sure he is scarred for life and will need therapy to forgive us as parents for trying to make him better! After disinfecting the entire house, the cousins showed up and you would have thought Cole just won a million dollars. Who wants to do stuff like eat anyway when there are other kids to play with?

We are so happy that Daddy will be home in the morning! Hopefully this weekend can be uneventful because Daddy and Cole are just going to be kicking it at home, while I head to Idaho for the festivities. Fingers crossed that we don't have to go back to the hospital for a while.
Photos by Capture Me Candid