Baby steps....

Noah is so strong and brave! Im happy to announce that Noah is no longer requiring oxegyen. We are still struggling with siezures on a daily basis, but once we took him off from the keppra he slowly turned around. Our Boston visit went ok. They ran some blood work and found that his ketone level in his blood was the lowest it has ever been. This probally contributing to the siezures. They went up on the ratio to his diet in hopes that this would help. I have not seen any real improvements since the change but we go for blood work next week and maybe these results will clarify some more questions. We are working on getting him some medication called clobazam but it comes from canada so it is a little longer of a process. Noah did start school 2 weeks ago and seems to enjoy it. It is so wonderful to see him so happy when we drop him off and so happy when we pick him up. They say he participates for a while and then sleeps for 10-15 minutes and then participates and than sleeps. But we hope that the times that he wakes will increase more and more as he goes. It takes a lot out of him he usually sleeps for like 2 hrs once we get home! He is getting so big! He is almost fitting into 4T pants without the adjustable waist now! ITs so amazing. He actually hit his 25% for wieght. This was so exciting because I dont think that he has ever hit the double digits for his weight percentile! Im enjoying staying home and taking care of him. Its less stressful on me to not have to worry about telling work I need a day off because of appts or because he is having an off kind of day. Its so nice to be able to cuddle him when he isnt feeling good and be here for him when he is having a bad siezure day. I do miss the kids and co workers at the day care however I feel I made the best choice! I've began getting his birthday party planned for this year. I cant believe my little boy is gonna be 4. Where has the time gone? I cant believe he is almost 4 already!!! It makes me smile at all the progress he has made. And think about how greatful I am for these last 4 years. I wouldnt change them for the world. Yes, I wish my little boy was healthier but it is what it is and with the chronic illness of epilepsy and the brain malformation it has taught me a little bit about myself. I would give anything to have him a healthy little boy but I cant change him and I love him for who he is. He makes me smile everyday and he gives me all the love I could ever ask for. He is so special to me and so many other people in this world. We are doing an ELMO themed birthday this year. Im hoping that the bright red ELMO is something he will be able to see. Ive began being crafty this year and have made his invites and some decorations for the party. I hope we have as good as a turn out as last year! Every birthday is a day to celebrate but I always feel that Noah's birthday's in particular is a day of celebration because we dont know how many we will actually get. So another year older is always well worth celebrating! The family is doing well. I am struggling trying to concieve but we are working on finding out why. It will happen when it will happen. We will keep trying until it does. Only God knows when that time will be. But Erik and I continue to grow in our relationship every day and I really feel blessed to have such a wonderful family. I love them so much!