Tuesday, July 23, 2013
Today marks four months and three days since Cutter's last seizure! We had an appt. with Dr. Elkay today. She was very pleased to see him and how well he is doing. She told us that hopefully in September she can start weaning him off the Dilantin since that will be six months of seizure freedom! She is glad that all of his levels are low. It means his body does not need that much medicine anymore. She does not plan to increase anything. We were thankful for that! Cutter did so good today. He was so brave! We will have an EEG in August a neuro-psych test in August and possibly an MRI in September. Thank you for all of your continued prayers and support! Love you all!
Tuesday, July 9, 2013
We took our first family vacation to Dollywood this weekend! The boys had a blast. Last year we were discussing how we weren't sure if we were going to get to go on vacation or not this year because we weren't sure what the future held. We didn't know how Cutter would do with surgery or if his seizures would be worse by then. However, Cutter is still doing very well post-surgery, and we have not seen any signs of seizures. Praise the Lord! He is doing very well with his OT, and we are seeing improvement in his development every day. We were able to go to Dollywood twice and Splash Country once. The boys were a little hesitant about the water park and had to get warmed up to it, but they really enjoyed it overall. We had wonderful weather and even got to see some great fireworks! Every small thing that Cutter learns how to do impresses us so much. This summer he has learned how to put on his socks. This may not seem like much to anyone else, but to us, we were so excited! We have been working on self help skills for quite some time now. He is learning!!! We are still working on potty training, but he has started talking about it a lot more so we are hopeful that it will just "click" one day! We are still dealing with some behavior issues and some "rages." We are not sure if this is medicine related or due to the fact that the part that controls his emotions is no longer present. We were told to expect this, so we are not terribly surprised. However, it is very upsetting when he has a meltdown, and we are unsure of how to help him. When he gets in those moods he can't talk to you and tell you what is wrong. He can't answer your questions yet, so he just screams and cries. Luckily, these fits are few and far between. He definitely has more good days than bad ones. I am thoroughly enjoying being home with the boys this summer. I have gotten to spend so much time with them, and I think they have grown quite attached to my hip! We have done some crafts, read lots of stories, taken some trips and had some much needed play dates (and naps!). They play so well together and love each other so much. It is sweet to watch them learn things together and teach each other, as well. I am convinced that having Maverick was the best thing we could have ever done for Cutter. I pray that they are always close and always look out for one another. I have seen through Cutter's visits to the Play Again Therapy clinic that Cutter needs his own sensory gym at home! I would love to build one of these for him (and for Maverick). Maybe sometime in the future.... I would love to find out if there are some kind of grants for things like that?!? Can't wait to see what the rest of the summer holds! Thank you all for your support!