Hello everyone!! We had our apt with our Neurologist today. Dr. Le Pichon-we love his apts. He always gives us LOTS of information-he is seriously so great!! We found out that the Keppra(seizure medicine) is most likely what is causing his bad behavior. I guess its very common in Keppra. He said that slowly things should get better, and as soon as he is done with chemo we will go back on Trileptal. I am SO relieved to know whats causing the terrible temper tantrums that last for hours. I was hoping that it wasnt because my son was turning into a little gremlin. lol. He has good days and then out of the blue will wake up a gremlin-then after a nap or sometimes the next day-he is back to being my Blake. lol. Dr. Le Pichon said that once he is off the Keppra he will go back to being our 'normal behaved' son. So we only have to wait a year to get him back lol. Its funny how knowing the cause makes it easier for me to tolerate the 'bad' behavior.
Thursday we go back to Children's Mercy to get Blakes counts. If everything looks good-we start round 2 of his chemo cycle. 1 down-8 to go. So far the cycle is pretty tolerable. Blake still hasnt lost his hair-but that could change is what Ive been told. I am ready for it to happen, and of course now that Ive been ready its not happening. lol. I guess time will tell. The worst part so far has been the Vincristine. Since we have Gabapentin now-that seems to be making the pain more bearable. Thank God!! I hope he NEVER has to suffer for 4 days straight again. It was horrible. Im not sure how the oral chemo will make him feel, we gave it to him only a day after he had his central line and g-tube put in. So the side effects could have been masked by his recovery. I will let you all know how it goes. I dont believe that it was that bad-at least it didnt seem to be painful at all last time. We will see.
I am so excited about the Catch Me Running Art Show. I am trying to figure out a color palette for Blake to use for his canvas. Any ideas? He is really into painting right now so I figure thats what we would enter into the show. I cant wait to see all the childrens art work. I used to love to receive art work from my kids in my class. There is something magical about the way they view the world. Before they notice all the fine details-they draw 7 fingers on a hand-or a cat with 5 legs. lol. Its so great!! I miss all my kids SO much! Im really looking forward to the show!
I will talk to you all soon!! <3
Thursday we go back to Children's Mercy to get Blakes counts. If everything looks good-we start round 2 of his chemo cycle. 1 down-8 to go. So far the cycle is pretty tolerable. Blake still hasnt lost his hair-but that could change is what Ive been told. I am ready for it to happen, and of course now that Ive been ready its not happening. lol. I guess time will tell. The worst part so far has been the Vincristine. Since we have Gabapentin now-that seems to be making the pain more bearable. Thank God!! I hope he NEVER has to suffer for 4 days straight again. It was horrible. Im not sure how the oral chemo will make him feel, we gave it to him only a day after he had his central line and g-tube put in. So the side effects could have been masked by his recovery. I will let you all know how it goes. I dont believe that it was that bad-at least it didnt seem to be painful at all last time. We will see.
I am so excited about the Catch Me Running Art Show. I am trying to figure out a color palette for Blake to use for his canvas. Any ideas? He is really into painting right now so I figure thats what we would enter into the show. I cant wait to see all the childrens art work. I used to love to receive art work from my kids in my class. There is something magical about the way they view the world. Before they notice all the fine details-they draw 7 fingers on a hand-or a cat with 5 legs. lol. Its so great!! I miss all my kids SO much! Im really looking forward to the show!
I will talk to you all soon!! <3
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