Recovery Day #2

Noah has had a tough couple of days but is doing okay. He has been running some fevers and some of them are quite high so they have came in this afternoon and done some labs to check to see if he has an infection. They are also treating him for an ear infection. We gave him his first bottle (if you want to call it that) it was more like 20mls at around 4pm tonight and so far that seems to be going well. Tomorrow they are going to be taking the epidural out and we will see how he feels then. Today he seems a bit more cranky but is much more awake than yesterday.

We met with a car seat specialist who is going to help find a new carseat for him because he is growing out of this one length wise. We will be able to see some demo's and see where we get with her.

We are also going to see a cranial specialist that is almost like a chiropractor while we are here to talk about the things he does and how they could help us. This doctor does manipulations of the skull and this is known to help with cronic ear infections and could even help with his feedings.

Another thing that we are going to do while here is redo the Feeding Study. The Speech therapist that works with us here thinks its a good idea. She was at the first one and thinks that if he really aspirated as bad as it showed we would have more problems with sickness. So she wants to do it again. And I would love to have it done again as well. Because part of me doesnt think he has a problem we still give him juice unthickened and he has done fine with it so far.

Well that is all for now. We have had some great nurses this time. He is doing ok. And Im tired but doing fine.

Thanks for all your thoughts and prayers. and please keep them coming.

Love you all

Beth & Noah

Recovering

As you all know Noah went in to surgery yesterday. The surgery went well and recovery was good. Surgery was at 12:45 and he was in recovery at 3:15 with no complications. He had a small siezure while in the recovery room but it was controlled and seemed to be his ordinary siezure and nothing new. We came back to the room around 8 pm and he was very good all through the night. They have him on an epidural and some morphine for pain and he seems to be comfortable. Mommy is not leaving his side and we are both doing fine. He still cannot eat he will begin liquids tomorrow- starting at 2oz every 3hrs. If that goes well Saturday we will try 4 oz every three hours. Thanks for all the prayers and keep them coming for a quick healing.
Back to my little pumpkin. Keep everyone informed.
Love to you all,
Beth

Rolling Rolling Rolling

Exciting news!!! Friday morning Noah figured out how to roll from his back to his stomach. Mommy has been waiting for this for some time now. And he has continued to do it ever since. Very excited.

Friday afternoon Noah was admitted to the Barbara Bush Childrens Hospital because of dehydration and malnutrition. Due to his Nissen failure he was not eatting and what he did eat he didnt keep down. Doctor thought it best to have him admitted to hydrate him and see what could be done about his surgery planned for Oct 1st. Could it possibly be moved foward.

This morning Noah is scheduled for surgery at 11 AM. They will be fixing the failed Nissan and putting a new one in. This time it is not going to be able to be liposcopically done they are going to have to open him up. Extremely nervouse this morning but thinking positively that everything will be ok. The surgery is 3 hrs long and after we will be here for a minimum of 4 days could be longer depending on his recovery. I'll keep you posted. And we appreciate your thoughts and prayers.

He has been improving with his head control and pulls himself foward quite frequently. Which has also been very exciting. We are getting there slowly but surely. And he is growing like a weed. 30 inches long and 17lbs 6 0z.

Thank you all we love you all.

August Already

So things are going good for Noah and myself. Noah is growing up so fast. I cant believe he is going to be 15 months old in 10 days. Its crazy. He is still the cuddle bug he always has been and I hope he stays that way. He has 9 (and one on the way) teeth now. He weighs 17 lbs now....Im so excited for a while he wasnt gaining but now he is. And we are progressing.
He still has trouble holding his head but is doing much better. Mommy and Noah have been playing on the floor alot lately, trying to teach him to roll. He is almost doing it himself. He will do it on soft surfaces, but not the floor. The other night I put him on the floor and walked out and he was turned the opposite way I had left him. So I stood and watched....he wont roll but he was laying there and he would pick his butt up move it and turn himself around the floor that way.
He is my pride and joy. Some days are tougher than others. Some weeks are tougher than other weeks but in the end I wouldnt change having him in my life.
Being a mother has brought me so much happiness and a reason for being on this earth. Some people ask me "how do you do it." Its not a hard answer I do it because I love him and couldnt see myself not doing it. Yes its not easy but he was given to me for a reason and he is a special little boy who I love more than I could tell anyone.
Some days I want to give up but I know I cant. Seeing him smile is what makes it all worth it. And even when I hear the word "mum" that is the best feeling in the world.
School is going good for me. I have a 4.0 average right now. Taking one class this term. Its not the most exciting class "Environmental Science" but its all the had available this term.
Still seeing Silas and things are going very well. He treats me the way I deserve to be treated. And we usually go out Thursday nights and it gives me a night to be an adult and have a little time to myself not having to worry about school or work. Its nice. And for once in a long time I'm actually happy.
Mom & Dad watch Noah alot for me now that Im working and going to school. And even though its tough for me to leave him for so many hours in a day. I Thank God for them because they are the one's Im most comfortable leaving him with. If it wasnt for mom watching him while I was at work I dont think I could leave him. He is not there responsibility and I know this and try not to take advantage of them. But the help and support that they provide are a HUGE help and I thank them and Love them so much for it. They help me to be the mother I am today. I want them to both know they are appreciated and I'm so glad that I have parents that are as supportive as they are. Thank you Mom & Dad I love you so much.
I guess that is all for now. We are doing good. Noah went two weeks without having any siezures at all. Now he is having a couple here and there mostly at night. He is gaining weight and still drinking by bottle. His lungs are great and so far we havent had to talk about feeding him with the tube! YAY!!!

Its been a while

Things have been crazy busy around here. Besides Work I have decided to stop the Online School I was going to and to actually take classes at Andover in Portland Monday and Wednesday nights. Its hard because that means Im away from Noah more often but its for him that Im doing this so that we can have a better life. I cannot and dont want to work at CLYNK my whole life. So that keeps me busy.
Noah is doing okay. The end of May we had him admitted to the hospital for some tests for one day. They wanted to do a feed study to make sure he was drinking his bottles ok. He had got a slight case of phemonia and they wanted to make sure that it wasnt because he was swallowing fluid into his lungs. Well the test didnt come back with the best results. The results showed that he was in fact aspiring into his lungs a little bit. It did show that he did better with more solid foods but liquid he didnt do so well. The hospital wanted me to feed him completetly by his tube. I wanted to try thickened feeds first. So that is what we are trying. We have been doing thickened feeds for about three weeks now and he is doing okay with that. The added bonus to the thickened feeds is he is gaining weight. His last doctors appt he weighed 16lbs 5 oz. I was phsyced because we hadnt been able to get past 15 lbs in a long while.
Physical therapy, Occupational Therapy, and Speech Therapy is going well. We still have not completely gained control of his head but he is doing 70% better with it. The physical therapist is trying some kind of tape on his back to help his muscles strengthen and it seems to really be helping. He is pulling himself foward now when he is in a sitting or laying position.
A day after turning one he actually rolled over while on my bed. He did it twice! He only does it when he wants to though. He loves to lay on his back and smile and talk.
Last month, the day we were in the hospital actually he actually said "MUM". It was a wonderful feeling. At first I thought I was hearing things but he has said it 6 other times now. I love it.
He is getting there one day at a time.
He started having some other siezures two weeks ago. They are not completely the worst siezures. But they are slowing coming out of Infantile Spasms I think. He now tightens up his legs and arms and rolls his eyes in the back of his head. The increased his meds and we are hoping that works. These ones make me even a little nervous.
But life is going well... Some days are tougher than others but we are alive and as healthy as we can be. And the doctors are so impressed with his improvements. And tell me every time I go in how good Im doing with him because they never expected him to be doing what he is doing already! That makes me feel good.
Thanks to you all for keeping up with us. And Im going to try to be better at updating this.
We love you all!

1st Annual Walk for Epilepsy!

On May 18th there is going to be the first Epilepsy walk in Maine. Its going to be at Young's School in Saco. Registration starts at 9am and walking starts at 10 am. I will be walking. Noah has had siezures since he was 7 months old and I have to do this. Its something that hits close to home. I thank Desi for supporting me in this and walking right beside me. Its a two mile walk. But it goes to finding better ways to treat and cure siezures, etc.
Im looking for anyone who has an interest to either walk with me ($30 per applicant, but $60 per team of 10) So if I could get a team of ten together it would be wonderful. Or if someone just wants to sponsor me that would be great too. You could let me know your interested in giving me a pledge and we could meet up or I could give you my address and you could send it.
Thanks to all.Beth

Making Progress

Noah is doing much better. He makes progress everyday. He is starting to do very well with his head control. Looking at this picture he is actually sitting on the couch "pulling his own head foward and still keeping it centered." He doesnt hold it for long periods very often but he is getting better at it. Our goal is next month! I want him holding it for his One Year birthday....so thats what we are striving for!!!

I cant believe he is going to be one next month. Time has gone so quickly. I have loved watching him grow. Not as quickly as other children but at his own pace. He is doing so good.

Life seems to be on one of those upward curves right now. It is wonderful but Im constantly reminding myself to think positive because I keep looking over my shoulder for it to start coming crashing down again. My luck is never this good. But I like it.

As you can tell by the pictures Noah got his haircut for the first time the end of March. I wanted it short enough to spike so she cut it short enough....but it still wont spike because he has such fine hair. LOL! Oh well....

Yesterday he got baptised. We had some of our family and friends there. It was a nice ceremony and after everyone came to the house to celebrate with Hamburgers, Hot dogs & cake! WE all had a good time. Special visit with his Uncle Ryan who he had never met before, Tiffany and EVEN his half sister came to see him. God brought the sunshine to us even though the newsman had called for rain. It was a wonderful and special day.

His siezures are slowly slowing down. Last month he gave us quite a scare and the doctor put him on another siezure med. This medicine has seemed to help out. He now has siezures about once a day sometimes every other day. Which is an improvement!!!! And when he does have them they last for shorter times....

Noah is doing well....Im doing well....... Life is looking up!!!

Keep praying!!! Its working!!!

We love you all....