It's Friday, and I am so thrilled because I get a long weekend. I am so ready to sleep in that I cannot even explain.
Jude had an okay night I guess. It seems like his seizures are at 2,4, and 7 around the clock....it's rather strange. So he had one last night about seven'ish prior to us giving him his nightly dose of meds. This one was very audible, and I believe that scared Emily a little. Honestly, it scared me a little too, but Mike calmed us all down. His brother had epilepsy so as a child Mike would see him seize so he is used to the noises. So Jude started seizing and his whole body lurches now, and he lets out a baby yell. He then cries in between the cluster seizures, but the doctor still insists they don't hurt. He explained that if anything Jude is just annoyed with the continous jerking movements. I am not sure I completely believe that, but I guess he is the doctor. As I mentioned before I also talked with one of my clients who experiences up to six seizures a day. She said she begins to see aura's and therefore knows a seizure is coming on. She will walk into her bedroom and lay on the bed because it's a safe place. She said she will "Wake" up some time later knowing she has had a violent seizure, but not feeling any pain. She said she does feel very tired and sore, but she remembers nothing of the episode. This gave me some comfort knowing that Jude probably doesn't recall anything. So after his seizure Jude fell asleep for about an hour, and I then needed to wake him up for his medication. Jude is already eating carrots and peas because we have to put the topamax sprinkles in them. He has a new found affinity for carrots, and munches them happily. So Jude ate some carrots with his topamax, 2 ounces of pedialyte with his phenobarb, and 2 ounces of formula. I expected him to fall asleep right away, but he didn't. In fact he stayed up for awhile staring at me again so I just held him while Mike and I watched the movie "Burn After Reading". Talk about a VERY odd movie, but from and artistic standpoint I can see the interest in it. Anyway, I did try to lay Jude down once, but he would have no part of that.....which I liked. Jude finally fell asleep as did I, and he slept until 4am this morning. So we bypassed the 2am seizure, and made it until 4 before he had one. We could hear his tiny little voice start, and the movements coming from his bassinet. Mike got up and got his dose of Klonnopin, but I am afraid Jude let most of it roll out of his mouth. Mike was very frustrated with this because Jude cannot have another dose for 8 hours. When Jude's seizure subsided I put his pacifier in his mouth and he "attacked" it. So we decided that he was hungry, and Mike tried to feed him. I am not sure if it was the seizure, the medication, or from Jude being tired, but he had a hard time eating. Mike is the food Nazi though, and insists Jude eats to keep his strength up. So Mike took little Jude in the living room where he turned on the lights and worked with him to eat. He left me in the bedroom to try to go back to sleep before work, but I couldn't get comfortable until they were back in there with me. So it's another morning at work, and I am tired again. My aunt from Missouri called me last night and I know I sounded ridiculous on the phone because my words get mixed up from being so drained. Last night I came home and said "did anyone get the mail?" I looked down and said "Oh yeah I got the mail". I am either getting old, or really tired.
I made mention yesterday that I feel like my life is beginning to become more normal, an acceptance of sorts. Last night while sitting on the couch Mike said, "I feel better now. I feel like this is ...... normal life". I told him how odd it was that he said that because my blog had referenced I felt more normal too. I guess you just pick yourself up, dust your knees off, and figure out how to move forward, and make life good again. We know there is a pretty great chance Jude will be profoundly disabled. We love him anyway though, and will keep faith he will accomplish more than they think. We will also continue to work with Jude on getting rid of these nasty seizures. We pray they will go away. Em told me she talked to her counselor at school again yesterday because she was afraid Jude's crying meant he was in pain. I explained to her exactly what the doctor had told me, and she seemed better.
On a side note I caught Emily waving out her window last night at the new little boy across the street. Mike said he may go have to thump the little boy...lol. It honestly reminds me of my childhood best friend who was also a boy and he lived next door. I know it's all innocent and friendly, but it still led way for me to have a serious chat with her. I told her to never let anyone pressure her into showing things she shouldn't show, drink, smoke, etc. Her response? "O.M.G mom I know gees" (Yes she said the teenage letters O M G) all while turning a nice shade of pink. ;) She got the point though.