What I have noticed in the days I have been able to observe:
-The myoclonics have been reduced.
-The morning is still hard. He's struggling to wake up and has a lot of myoclonic activity.
-Cole is back to sleeping more, which he always does with the intro of a new med. He's averaging 12 hours and 2 hour naps, with waking 1 or 2 times in the night. It doesn't help that he has a summer cold (official diagnosis from the doc), which is causing him to sniff all the time and be congested.
It seems that we have kept the overstimulation tolerance with the decreased Depakote. We took him on the metro for the first time to go and see fireworks on the mall. I must admit, I have high expectations when it comes to celebrating the 4th. I come from party people and a small town that goes all out. BUT, if I have to miss the celebration in my hometown, seeing Josh Groban for free in my new hometown is quite pleasant, thank you :)
It took a lot of guts because we knew that there was going to be lots of people, noise, etc. We pre-loaded Cole with Valium and he did great! The way back home was more crowded than I have ever seen the metro, it reminded me of Hong Kong when everyone is going home from work. Just tuck your elbows in and hold on for dear life! Luckily, we found a little corner and Cole just acted oblivious to the chaos. Thank you, Valium!
After multiple discussions, we decided to try Topamax instead of Clobazam because they have similar properties and we could get it immediately. So far, so good I guess. We are still going to start the paperwork to get Clobazam, but it is taking 10-15 days to get it into the country. SO, we'll just have it as a back up in case the Topamax doesn't work out. This being said, I think we are going to stick to this med for at least a month...he is only on a very small dose and it seems to be making a difference.
Speaking of bravery, this week has had so many "firsts". Besides going on the metro and celebrating the 4th somewhere besides ID or UT, we started our nursing shifts! This has been such a great, weird, fun, stressful, tiring, wonderful, sad thing. I know...lots of emotions; but, it's the truth! Having to find someone that is qualified and then basically give them full trust in the very beginning of a relationship and counting on them to keep your child alive is strange. It takes bravery. It's also uncomfortable at times to realize that someone who is practically a stranger is sitting, awake in the next room while you sleep. Uncomfortable, yet comforting...so ironic. So we have had our first night nurse, our first day nurse and I've tried to map out a schedule. The list of things that I want to do in the next couple of weeks don't even really include fun stuff, it's totally boring things like organizing the pantry and cleaning the storage room! We'll be sure to throw in some fun stuff too :) It has been the first time that I can be in the house, but not have my eyes on Cole at all times. Weird, but a burden lifted. Having to put the pulse oximeter on Cole every single night and sleep in a bed with me, without Cole, has also brought all of these emotions that I mentioned out in Brian. It's just another reminder that things are different. Truly though, we have entered another season in our life. We went to the grocery store together, without Cole, last night for the first time in years. It was strange, but enjoyable. We weren't racing through trying to get things done as fast as possible, it was actually kind of pleasant! :) The whole situation is just going to take some time to get used to. All in all, the bravest one out of all of us is this guy. He's a warrior.
No comments:
Post a Comment