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!

Still traveling ona Bumpy Path!

So Noah is home and has been home for about a month. He is still fighting this phemonia but seems to be slowly making progress. We are still struggling with siezures. His Depekote levels will not seem to increase. His body is metebolizing the levels to quickly. The doctors are unsure why but seem to think that it might have something to do with the ketogenic diet. Tomorrow we go to Boston to check on the progress of the diet and see where we go from here. I really think that before Noah got sick the diet was doing great things but since he has been sick his siezures have taken a turn for the worse. His neurologist here has tryed to increase the Depakote to the highest dose he feels comfortable with no success. Last week the neurologist added a siezure medication that seemed to make him to drugged up. All he did was sleep and when he was awake his eyes were all glassed over and he just layed there. Friday I called into the doctor and requested him to take him off from this new mediacation. This weekend he has had increased small siezures but he seems to be coming back to himself again. We are getting some "Noah personality" now. He still is sleeping quite a bit but we are enjoying that he is babbling smiling for short spurts.
On our visit tomorrow I am hoping that they increase Noah to the 4:1 ratio. This is the last step on his diet ratio. I hope that this will be the answer we are waiting for. Portland just wants to increase meds and I dont want that for my son. I was asked a question this week that was hard to answer but Noahs pediatrician said that in Noah's case it might be a question of having a child who has some siezures or having a child on so many meds that he sleeps alot of the time. I told her that I would rather put up with some siezures than not have Noah laughing and smiling and babbling. I just hope that there is something out there that will help him so that I dont have to make this decision. Part of me wishes that tomorrow Boston sees Noah and see's how he is and wants to admit him to help me figure out what to do next. Portland I feel is to proud to admit they dont know what to do and without them sending us or possibly Boston admitting him I dont think my insurance will pay.
I just want my baby boy back. I said to Erik yesterday: I wish we could rewind time back to January when my boy was healthy and smiling! I just pray that we get him back.

School has been postponed for Noah. The pediatrician pulled him the week we came home from the hospital. He was suppose to be able to return this coming week. But I have a gut feeling it will at least be one more week out. He seemed to really enjoy preschool so I hope that we will get back there. We just need him stable before we bring him out.

I gave my notice at work and my last day was March 4th. Noah needs his mommy home. This winter has been a very rough winter. I was bringing home to many colds and etc from working at DeerPond. So although I miss working with the other child and co workers at DeerPond Edu care it is what I have to do to keep Noah at his best quality of life at this time. Im working on trying to put more attention to my Mainely Diaper Cakes Company. Trying to get more advertising out there and trying to find places that I can display some cakes and sell to the public. Please email me if anyone has any suggestions.

We still need many prayers from everyone. It scares me that it has been over a month and Noah is still fighting very hard to pull through. It has been a very emotional month and continues to be. I wish and hope everyday that he will be better! We love you all. Please keep those prayers coming....