So much improved!

So it began last week with Noah being put on O2 Sunday night by the nurse. I took him to the doctors tuesday because I couldnt get him off the O2 and there was really no respitory reason for his need for O2.So I took Noah to MMC ER Wednesday morning because I felt that things needed to be looked at... he was sleeping most of his days and I had actually gone to bed in tears Tuesday night because I just didnt know what to think or do anymore with his siezures.... So wednesday I called the doctors office to get him in for an Emergency EEG...they could not get him into the office until Tuesday and I was not waiting for Tuesday so we took him to the ER. They did an EEG in the ER and Noah was having continuous siezures again.... Admitted they hooked him up to a 24 hr EEG and monitored him when given meds to stop the cycle... Things didnt improve with a snap of the fingers... I again was threatened that if the siezures didnt stop the next step was ICU and intubation. Let me just tell you I really hate this threat it really eats away at you until he is in the clear...I had alot of butterflies in my tummy and did alot of praying to keep him from this step... We started a new drug treatment called Clobazam on Friday. We can only get this drug from Canada and insurance doesnt cover it but I am willing to try it. It beats the other option of giving him a drug "that could mess with bone marrow and could be fatal...it hasnt happened yet in children but in some adult cases....Im all set...Things were not looking good until Saturday late afternoon. Up until Saturday afternoon he was still sleeping alot and siezuring off and on... He had the doctors and nurses all scratching there heads because he would be at 100% when on just a 1/4 liter of O2 but when he came off the O2 his stats would plummet into the low 80's high 70's..... Then Saturday came and daddy took him off O2... he was alert and talking and voila! he never went back on O2.... By sunday I hadnt seen a siezure in 2 days and he was talking and smiling and I have not seen him this good since December....
Its crazy how fast he can come down with something but even crazier that he can turn around for the better so quickly too. I had the neurologist on call in the room Saturday morning because he was sleeping all morning long and then he woke up and was 100% better and we had done no changes... he just amazes me....

Now he is so SO SO SO much better...It makes me so happy to see him this way. Its been so tough these past few months..I was unsure if we were ever gonna get him back to this state ever again... I was worried we were not and here we are now and I am so happy. I feel like a wieght has been lifted off my shoulders. He went to preschool yesterday and the teachers were all so excited he stayed awake and was vocal throughout all of school except 10 minutes or so... That is a HUGE improvement. I hope it stays this way for a while.

We have got an okay from Alfred Parish Church to do another Fundraiser Dinner for Noah. We have scheduled it for July 23rd 2011. Still have lots of planning to do on my part but I know I have family and friends support and help to make it successful like last time. And God knows we need it expecially now that we will be using it to pay for this new "miracle" med!!!!

I will try to keep you posted....life is super busy right now... with Noahs preschool schedule in which I still need to bring him because Nursing cannot seem to be set up and transportation is another fight....uhh...it really is frustrating...and Marissa is playing Softball again this year. She does really great with it too but the schedule for that is crazy as well....I have such a wonderful family and I can truthfully say that my life is full of adventures everyday!!! I love it!