So Jude was scooting around in his bassinet half the night last night so we are a little sleep deprived again. He did try and have a seizure last night prior to putting him to bed. His eyes followed the normal seizure moves, but it was short lived and he did not twitch at all. Although, he did wake up at 4am again with another audible seizure. I am beginning to think that seizures are cunning creatures because they maneuver themselves around the medication by adjusting. Once they have adjusted to the new medication the seizures start up again and increase in frequency. I guess we truly have to stay on top of them, and may have to realize being seizure free might not be reality. We can hope and pray, but some children never truly are free of them. I heard from an old acquaintance today who turns out to be the head of special education at a specialized school. I felt truly blessed to hear from her, and thought it was a so nice she took the effort to contact me. I look forward to hearing her advice on Jude's situation. I am beginning to research items that will make Jude's life easier as he gets older from chairs, to spoons. I am very encouraged to see there are so many wonderful products out there for our little man.
On another note I decided to hold a girls night at my house. I thought I needed to start putting our lives back to the way they were while adjusting with our new normal. So since I love to entertain I thought this would be a great inexpensive way to have a fun night. Mike said he would keep Jude upstairs in their "cave"... ha! I asked everyone to bring a dish, and I will pull out some board games. I am pretty excited about it.
1 comment:
Hi. I know you are so worried about seizures. Just stay on top of them. Max is always going to be at some risk for them, BUT he is on good medication (Trileptal) and I just have faith in that.
I think the best thing you can do for yourself is do some stuff you did before having kids, and having a GNI (Girls Night In) is SUCH a great idea. I need to do one of those, thanks for the inspiration.
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