Smiles and Rasberries

Well..... I can officially tell you that Noah came off the O2 this morning. Keeping his stats above 90's and blowing rasberries and smiling like his usual personality. He seems to be feeling much better and its so good to see.
Saturday I had a voice mail from Boston's Children Hospital and Noah's lab results FINALLY found its way to them and they were okay with me lowering the ratio to his diet. With mixed emotions I found the old recipe and made his formula for the day.Mixed emotions because with the process of tapering down the ratio this could mean one of two things. Either 1.)Noah like we are hoping just needs a lower ratio and his siezure control will get better--- occasionally happens on the diet but is extremely rare.....which kinda makes it more apt to be true in Noah's case :) or 2.) the diet isnt going to help and we are back at the drawing board on how to control Noah's siezures....which leaves playing around to find the right drug remedy or possible surgery....either option a real stressful situation. Well..... we changed the diet Saturday and I can already see a difference. I cannot tell you if in fact it has to do with the diet ratio change 100% or if he just is feeling better. I really feel that its a combination of both. He is doing much better siezure wise...Yesterday I only remember seeing maybe 3 at the most....and he was having SO SO many a day. I hope this diet is our answer, I havent given up yet! He has so much more personality these past few days and I really think it has a lot to do with the diet change. Even before the change when he started feeling better I didnt see this much personality. I havent seen this "Noah" in a long time it seems like. Maybe our prayers are being answered.
It was so cute yesterday I had him chillin in his crib downstairs while I did some work on the computer. He has a Rock n Roll Elmo in his crib that I frequently turn on for him when he is in there. I turned it on for him a couple of times before sitting down at the computer. I had put Elmo next to Noah in the crib before I left! While sitting at the computer Elmo went on!!! NOAH HAD TURNED HIM ON ALL BY HIMSELF!!!! He did it three times, it was very exciting....I tried to video tape him accomplishing this but he would not preform for the camera...I was excited all the same!!!

Lots of things to start planning for that are coming up..... We have Noah's 4th birthday Party coming right up. I cannot believe my little boy is going to be 4!!! Already!!! Time flies by way to fast. We are doing an Elmo themed birthday and Im striving to make alot of his decorations for the party. Ive been really working on them the past couple of days.

The Epilepsy Walk is coming up. Im beginning to ask for donations for that. It is May 16th this year and for the 4th year in a row we are going to have a "Team Noah." This is a VERY important walk and event for us. Noah and the Family deals with Epilepsy on a daily basis. Its a very hard disease to go through and very stressful. Our participation helps to show others they are not alone and with the money raised it helps to get more researched accomplished to figure out new treatments, etc.

Im also in the very beginning stages of planning another benefit dinner for Noah. We are getting low on our funding with all the trips back and forth to boston, etc. We are in the process of needing to get some equipment for Noah that his insurance will not help us get. He needs another Special Car Seat so that he can go to and from to Preschool safely. Our car seat is so heavy and the safety restrains would make it very hard to take in and out of the van on a daily basis for school. Insurance covered the first one and will not cover another. We are also looking into getting Noah some supportive seating for in the house. Right now he uses his old carseat for a seat while in the house. And while it seems to work great for him, it doesnt give his back and hips the support needed. We have a adaptive stroller that works great for him that the insurance covered. However our house is much to smaill for the stroller to fit through the tight hallways, etc. So this is another area we need the finances for. Right now Im in the process of finding out if we can do the supper in the same location as last time...and as soon as I get the green light there I will begin reaching out to a team of family and friends to help with other details!!!

But good news being brought to everyone today. Noah is feeling better again!!!! He is off O2 while he is awake...still needing some O2 while asleep... He is more himself..... smiling and happy....and less siezures!!!
Hopefully we are traveling on a foward "happy" path for a while now!!!!