A whilrpool of emotions

So here I am fighting with doctors to get what I need again. I've been fighting to get an O2 monitor for Noah for a while now....but exspecially after this last episode. Im not sleeping well at night and if I keep driving the way Im driving 9always looking behind me at him to make sure he isnt purple) than Im going to get in a car accident. So Ive been really fighting....but the pediatrician office tried 4 places to get one for me and had no luck. So yesterday I went to his neurology appt and asked him. He said he wasnt sure how to do it but would look into it. Other parents have these monitors for their children? It shouldnt be that hard.... frustrated.
So the neurologist appt went ok. It kind have scared me a little bit. But thats how I live my life is scared. He says that we know that Noah's siezures are eventually going to get VERY HARD to control, and that this episode two weeks ago is just the begining. The EEG that they did in the hospital showed signs that the siezures are coming from the right side of the brain in one of the areas that are malformed. He said that there are many drugs that we havent tried that we will be able to try to control them with. But if the drugs dont work we will end up in Boston Children's or Mass General to try a diet treatment, etc. These siezures scare the **** right out of me. I cant even imagine worse at this time.... I think the siezures are the hardest for me to deal with. I feel like sometimes I can get used to everything else but no matter how long I deal with siezures I just cant become unfrightened. I guess that is why the Epilepsy walk that Im doing in a couple of weeks is so important to me. Hopefully one day they can find a cure or understand them a little more.

Ive been very emotional lately...and Erik would probally say (hard to live with lol). I am SO excited that Noah is turning two. But at the same time his birthday coming up sends me through whirlwind emotions that I probally shouldnt have but do. Its hard to have someone ask "how old is he?" and when you tell them "2" they look at you with a look that says "he doesnt look two!" Or yesterday a woman asked this same question and we gave her the answer and she came right out and said "does he have cerebral palsy?" Well.... no but yes....(thinking) and who's business is it of you to label my son..... I guess I just get a little testy sometimes. Dont get me wrong I celebrate that he is 2 and although it has been 2 VERY hard years for me it has also been 2 wonderful years. I love him more than words could tell you. He brightens me days and nights....and that smile could erase any pain that I have, or helps to diminish the stress that I sometimes feel. But at the same time I dont know why 2 is so difficult for me this year....is it my baby is growing up? what is it? Its hard to put into words some of my feelings. The other day there was a little boy at work with his mom, walking and talking....he was sooooo cute? and when I asked the little boy how old he was and he turned around and held out 2 little fingers saying "2" I felt like I was just punched in the stomach....and its been bothering me ever since. And I feel like its horrible of me to feel this way. Noah is precious and wonderful and he is my handsome little son. And I love him no matter what.... but turning two I just wanted to see him make a mess of his birthday cake this year....I wanted him to be able to help me open his gifts this year....I've been hoping for so long to just see my little boy sit up on his own..... I know Ive got to keep hoping....and I know one day he will do it..... but I guess its just a little harder this year.
Noah is turning two this year? Can you believe it? His mommy can't. Ive seen a lot of babies this last week...some that were his size when he was born and WOW.....they look like dolls..... LOL!
Well thats it for now. We are having Noahs birthday party this weekend so I've got to go help mom clean for it.... ITS TIME TO CELEBRATE NOAH.