Still breathing.....thank heavens

Noah has not had another episode since we came home on Sunday. He has been fine. Mommy is a nervous reck but that is to be expected- I guess. Took him to his follow-up appt on Thursday and the doctors are going to try to get me a stat monitor that I can hook up to him in the car and at night while he is sleeping. Crossing my fingers. They said he looked great and that as long as he didnt have another episode waiting to see the neurologist would be fine for the 7 days that they scheduled his appt. If he had another episode the doctors would be calling the neurologist office. He does have another ear infection!!! Surprise! Surprise!!! So we had to add another medicine to the long list.
We took him swimming on Wednesday to the inside pool here in Waterboro. He actually did great! I thought he might now like it because he likes his baths very warm. This was his first time swimming. Well he lasted about 25 minutes in the pool. Launa his physical therapist came to do PT in the pool. When we first got him in he started fussing but then he started talking and smiling and then he got fussy and started shivering....I forgot my camera, so I cant post pictures. But I will bring it next time.
I was a little upset yesterday. For a long time now I have been saying "no more babies." I was to afraid that what happened to Noah would happen again if I tried to have more babies. Well finally we go to Boston and the doctor tells me to get Genetic testing before more children. Erik and I talk about it and decide that I will get tested and down the line (no where close to this year) if the testing comes back fine we MIGHT try. So I can experience all the things Im not going to be able to. And if the test comes back more than 35% chance it would happen again then I would get my tubes tied. So I finally get the nerve to call Genetics so I can Get these tests done and they tell me they have NOTHING to test me for because Noah has passed all his genetic testing so far and without a reason for him, there are no tests for me to take. She knows it will be hard to get pregnant not knowing but basically "oh well." So needless to say Im back at square one and I dont know if I honestly can have another child not having any reassurance...... I just dont know but I have a while to think about it. Im just frustrated.
Well thats it for now...gotta go get ready for work. Everything is ok right now. I'll keep everyone posted.

Home Sweet Home

Yesterday Noah came home from the hospital. We have a whole lot of new medications but they seem to keep him siezure free. Last night was a tough night for me because without the Stat monitor I kept getting up to check on him in the night to make sure he was breathing. He really terrified me this time. He seems to be better is more himself. He has his appetite back and wants a bottle all the time. Right now he is being fussy so I need to make this quick but I wanted to let everyone know that we are out of the hospital and home. Keep praying.....
Love you

A Very Bumpy Road

So the last few days have been the most scariest days of my life so far. Thursday started to be just a usual day. Noah seemed to be ok...he didnt seem quite himself but he was doing alright. My cousin Alisha came over for the day to help me with him while I was in the doctors office. We went to my appt. Noah sat in his stroller while Alisha read to him, he was smiling, etc. Then on the way home he seemed to fuss the whole ride. Until I turned onto the road right before my road and I noticed he wasnt fussing anymore....looking behind me in his mirror his head was hunched over. Something didnt seem right. I ran around the van opened the door and he was PURPLE. He was having a siezure and wasnt breathing. I had Alisha call 911 while I tried to stimulate him finally he began breathing. The ambulance got there and he told me to get in the back because although Noah was breathing he still didnt look good. Got in there and his respiratory % was at 56%. And then he stopped breathing again. With Lights, Sirens, and speed we were rushed to Goodall Hospital. Noah stayed stable for quite a while while in the ER so the DR's sent us home saying it was a siezure and he was fine now so there was nothing they could do.
We got home and ate supper and Noah seemed fine. Erik left to take Alisha home and about an hour later( Erik was 5 minutes from the house) Noah stopped breathing again and started turning blue. Called 911. This was a quick one though and he came right out of it. The ambulance showed up and I was at crossroads on whether to stay home or have them bring me again. I decided I would stay because he usually doesnt have more than one siezure if he has any. Well.... 10 minutes after sending them away. Noah stopped breathing and was having another siezure this one lasting for 30sec to a minute. 911 was called again and they got there he had come out of it. But just as they came in the house he began having another one and was turning blue and gray skinned......by the time I got him in the ambulance he looked aweful and still wasnt breathing...... This one scared me the worst. But in the ambulance we got him breathing and he was fine the whole way to Goodall. At Goodall he had another one 15 minutes after we got there, and stopped breathing. They gave him Atavan ( a siezure med that is suppose to relax him and slow the down.) but 5 minutes into the adavan he had another one and again stopped breathing.....one more after that....and they called Maine Med and an Ambulance came and brought us to Maine Med. At Barbara Bush Childrens Hospital I was explaining the situation and he has another one and stopped breathing again. The had to use the bag pump to resesitate him. Did it again and they got him stable sent him to the treatment room and waited for the Pediatric Intensive Care Unit to be ready for him.
We spent Friday and half of Saturday in Intensive Care. They were going to bring him upstairs Friday afternoon but he had another one around noon and they kept us in there until yesterday arond 2pm.
He seems to be doing better. He hasnt had another one since noon on Friday. They have him on 4 different siezure meds right now. I dont know how long we are here for. They just need to find the right doses and the right mix of meds. These last few days were VERY scary and I dont want to go home till they know that he is completely stable.
I'll keep everyone updated as much as possible....but I dont leave his side very much right now. Luv you all.

EEG Results

So Noahs Neurologist called yesterday because I thought Noah might be having a reaction to his new meds. The doctor didnt seem to feel that he was. But while I had him on the phone I asked about his EEG. Good and Bad news!
The Good news is that Noahs EEG had improved since the last one done in August. It showed no signs of hipsarithmia ( unusual brain wave pattern associated with Infatile Spasms) YAY!!! No more Infantile Spasms...... so excited.
The Bad news was that his brain still shows signs of irritation probally formed from siezure activity. He is still having those small shakes to his head, less frequently but they are still happening. The DR said that if these keep up he is going to do a take home all day EEG and see if some of these can be seen on an EEG to find out exactly what they are. That should be fun (sarcastic).
But all in all its good news because siezures are easier to control than Infantile Spasms. They scare me to death.....but more is known about them.
So it seems we might have overcome ONE battle.......
This is why I am doing the Epilepsy Walk to help raise money to learn more about siezures and help find more cures......

Update on Life

Noah seems to be feeling better. He still has somewhat of a runny nose and a small cough but Im beginning to think its allergies. Lucky for him mommy decided to share those genes with him. We hope all of you had a wonderful Easter yesterday. WE did. The Easter Bunny came and left Noah a basket full of PJ's and chocolate pudding and the NEW Tigger and Pooh and the Musical too DVD. IT looks like lots of fun. We had an Easter Egg hunt which both girls had 32 eggs to find and Noah had two to find. Then last night my brother came over the house and we had a Ham dinner....it was yummy.
Things are going good right now. Noah has slept through the night for the past 4 days (knock on wood) and I feel refreshed. We got a new bed and its so comfortable I have a hard time getting out of it in the morning. LOL! Took some recent pictures yesterday... I really love the one of the two girls and Noah.

A link to my page.....

Epilepsy Walk

www.firstgiving.com/teamnoah1

I will be participating in the 2nd Annual Epilepsy Walk in Saco, ME this year. I have set up a website that anyone can donate and sponser "Team Noah." Please do. This walk means a lot to me and I really hope my participation helps to find ways to educate and find new cures for this disease. Last year I raised about $160 and I want to raise more this year. Please help me to achieve my goal. If anyone is interested in walking the event let me know. Love you all.

Waiting

So Noah has been doing alright.....well... for the most part. We started him on that new medicine and the doctors said it can make him irritable....well he has been extremely irratable the last few days. Well Saturday I realized he was EXTREMELY constipated and needed an Enema...."thats easy I'll go to Hannaford in Waterboro and get one." How wrong was I! I ended up having to go to Biddeford Walmart because they are the only ones who sell infant ones. So we did that and his mood changed for the better.
We had two nights of sleeping through the night......two in a row...... couldnt believe it. But last night was another story. But neither one of us is feeling good right now. He has diarhea now....bad.....and isnt eatting so I think he might be hit with some sort of flu bug, his temp last night was 100.8. And Im feeling pretty much the same as he is..... so we are both just going to have a PJ day and relax. No school for me tonight....Im going to rest.
We are going to end up waiting for the results of his EEG till April 30th. Which I just find is crazy. The had to rush us in sooner to have it done because there was concern but now we have to wait a month still to get the results. It doesnt make sense. Oh well....if something was seriously wrong I would think they would call.
His little shakes seemed to have stopped for the most part. Once in a while I still see a few but nothing like it has been. He wakes up at night and starts staring out and I jump out of bed thinking the worst....but he is always fine...... I just stress all the time that something is going to happen while Im sleeping.....Im surprised I get any sleep at all......
Well....someone is summoning me into the living room to have a few sips of a bottle......which in that case is going to lead to him being pumped liquids all day....but whatever works.
Love to you all

Update

So Called the neurologist on Monday and he decided it was best to start Noah on a new medication called Keppra while still tapering him off of his Sabril. The shakes have seemed to slow down but he is still having some throughout the day. He also wanted Noah's EEG rescheduled for a sooner appt.
Meaning TODAY! So this morning I had to wake him up at 5:00am and keep him awake until the appt (which was scheduled for 7:30 am). Notice I said Scheduled.....it drives me crazy when they have you do this kind of test and tell you to keep him awake and then make you wait in the waiting for a 1/2 hour past the scheduled time of the appt. But we got in there and although VERY unhappy and VERY hungry (because mommy couldnt give him a bottle until they started because he would fall alseep with it.) the test went successful. He drank a bottle while they put the wires on his head and then fell asleep shortly after they started recording and didnt wake up until we woke him up after it was over. The EEG Technician said that she didnt see any signs of hyperithmia this time.....meaning he has improved from the last two EEG's but we need to wait to hear from the neurologist before we get to excited about this news. I was hoping he would do one of the shaking spells while hooked up but that didnt happen. His follow-up appt isnt until May 7th but I will try to reschedule that to a closer date.
He seems to be feeling better, still has a cough but doesnt sound nearly as wheezy. He has a follow up pediatrician appt tomorrow so we will see the results tomorrow. Cannot wait till his medication schedule is back to normal meds. LOL!!! I made a list on the fridge of meds and end dates, doses, etc. because its just crazy right now!!!
Other than that Life is good. Mom, Dad, and Grampa leave for vacation in Florida on Friday and we will miss them while they are gone. I've tried to get one of them to allow Noah and I in their suitcases but they just wont let us. LOL

I cant believe that Im beginning to make plans for Noahs 2nd birthday party. 2nd Birthday!!! Wow....exciting! The other night it made me think back to how fast it seems to have gone by but at the same time how much he and I have gone through together. And how much we still have to go through.

Well...thats it for now!
Love you all