Team Noah!!!! And Life!!!!

So May 17th we participated in the 2nd Annual Epilepsy Walk 2009 in Saco, Maine.
Team Noah raised in total: $495.00
Alisha & myself raised money
Walkers included: Erik Goodwin, Marissa Goodwin, Cindy Quint, Charlie Quint, Matt Kearns, Alisha Phillips, Myself, Courtney Frazier, and Noah. Before the walk it was raining. I thought we were going to have a wet walk but right before it stopped raining and the sun came out for a little while. After the walk it began raining again. So weather wise it wasnt the best conditions but it stopped just in time and there was a decent turnout. Thank you to all the people who donated or participated in the walk. This walk means a lot to my family. Next year I hope to have a even bigger Team Noah!!

Noah is doing ok. He has had an ear infection for quite some time. Last Thursday, Friday, and Saturday he had to have an antibiotic given to him in shot form. Yes 3 shots in three days. The other medicine wasnt working for him, he ended up getting a double ear infection while on medication for the first ear infection. The shots seem to work, we went to his 2 year check up on Monday and he had no ear infection. Ended up taking him back to the doctors on Thursday because this week has been HORRIBLE. No sleeping....fussing all the time....not eatting..... thursday found out he had the beginnings of another ear infection and a viral infection.
Doctors dont really want to do tubes in his ears because of his siezures and the risks of anestesia...but if we keep having to give him shots, we might have too.

We got some more news on Noah this week. Dealing with genetics...Ive been pretty upset about it this week. I had another blood test done on him two weeks ago. Results came in and it looks like Noah is missing a tiny piece of his chromosome #2. There isnt a lot of research done on Chromosome #2 and to know more they need to get DNA from both Josh and myself. Im really upset that we have come so far and we are going to rely on Josh on wether or not we can get the answers we need. I hope he will step up to at least help us in this mission. Im scared he wont. I hope Im wrong.
Im getting my DNA work done on June 22nd so we will at least have some answers after that.

Noah seems to be having more siezures lately. The little shakes again. Been trying to keep an eye out. Nothing major lately...and Im crossing my fingers....but Erik has even agreed that he seems to not be himself lately. Staring off more and long empty stares...... I wish they would get under control.

Just using the O2 monitor at night. Had to stop using it in the car rides because his toes were getting sores on them for having the probes on them to long.

Thats it for now. Keep praying...siezures dont get worse.....Josh agrees to the DNA stuff...... I need answers for Noah and his family and love ones.

We love you.

Birthday Boy

Well this year we had a lot of fun with the little guy for his birthday. At his birthday bash on the 3rd we gave him a piece of cake and mommy helped put his hands in the frosting...after that first bite.....he LOVED it. We got a reaction from him this year...which made my day. He had frosting all over his face and on his nose!! It was so cute.
Then on Monday we took him to Mike's Clam Shack, Wells. The waitresses and staff all love him there. They are always so great with him. Well I bought an Ice Cream Cake and we brought it with us. After dinner EVERYONE in the restaurant sang him happy birthday.... and he loved the chocolate icecream.
I cannot believe my little boy is 2 years old already. We have been through so much and Im afraid there is so much more to go through. But every smile makes everything so worth it. I have a very strong little guy, and he makes my life so worht living.
He seems to be doing better. We have had no siezures for about a week now. He has been fussy and started running a temp on Sunday so I took him to the doctor's- I could have diagnosed it myself--- but another Ear infection. But I dont know what has got over him the last few days he has been so vocal and smiley...its been nice. Everytime he smiles I cannot help but smile myself.
I did get the oxegyen monitor last week. And I wish I could say that I have slept. Well the past couple days I finally have but before it wasnt him keeping me up I just couldnt sleep. Had a friend put a little kinesio tape on my bad shoulder to see if it would help and "man what a difference." And I've slept like a rock ever sense.
Tonight is my last night of class for 8 weeks. Im so excited. I need a break. I cant wait to spend more time with Noah this summer. Last summer I was working alot of hours and school. So it will be fun.
Thats it for now.... love to you all....keep praying for us....prayers help.

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.