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....

I cant believe he is almost a year old!!!

Almost a year old and he has come so far! He isnt completely there yet but he is such a strong little boy. Growing up so fast. He now weighs almost 16 pounds and he is striving. The physical therapist actually had him putting wieght through his legs the other day. At first she had to help him by locking his knees for him but by the end he was doing it mostly by himself....man did he look all grown up standing by the couch!!! Lately it has seemed the day for which he holds his own bottle is getting nearer and nearer both hands keep coming close but not yet!!! Soon though! He is off the steriods and at first his appetite decreased and we were worried but it seems like lately he is getting that appetite back. Mommy is helping that along by letting him try stuff off her plate once in a while LOL!
PT is still coming in twice a week and it seems to be helping. OT is coming in once a week. We are making progress!!! Thank God.
I'm getting Noah baptized on April 13th. It will be a very special time. Thank you everyone for praying and keep doing it please. We are not completely out of the water yet!!! There is still a long road to travel. But we can do it.
Noah's hair is getting SO long.....I was going to wait until he was a year old to cut it....but I dont know how much longer I can hold out....I know its only two months away.......but its driving his mother crazy.
His siezures have not stopped. We are still trying that new drug that I was talking about last time. WE keep increasing the dosage. The doctor started him out on a very small dose and it seems to have slowed them down but it hasnt got rid of them. So we have increased it already once and the doctor today increased it again. I'm praying that it helps....Im praying that it stops them.
Well I think that is everything right now. Life is going good!!! And I pray it stays going like this!!!
WE both love you all! Happy Easter everyone!

Where does the time go???

Noah is doing well.... He has come a long way...but it is so hard to believe he is almost 10 months already. We did that Barium Swallow test and everything came out fine. Its still intact! We dont know why he is bringing things up or burping but his surgery has not come undone....thank goodness! He is striving with Physical Therapy he had an awesome session this week. P.T. is coming in twice a week now and we have Occupational Therapy coming in once a week. He seems to be doing really well with that. He still isnt holding his head up completely on his own yet but there is major improvement!!! Im excited.
His Infantile Spasms have not disappeared we have put him on a different drug to try it, and are slowly taking him off the steroids. This new one seems to be helping but as we take him off the steriods they seem to be increasing again. Doctors say its just time...we have to find the right dosage as he comes off the steriods. Im praying that this drug works because the next alternative is injections and I dont want to put a needle into my child everyday. So please pray with me that this drug works.
He has a total of 6 teeth now!!! And seems to be more perceptive to things around him. He gives you eye contact now and looks at himself in the mirror and is smiling more and more. His trunk is stronger and he seems to hold himself better. Before long my little guy will be sitting by himself hopefully....but he is getting so big! He weighs 15 pounds 4 ounces now!!! And is something like 26 1/2 inches long..... We can actually get him into size 12month clothes (some of them) now!!!
My schooling is doing good. I recieved 90's on my first two exams! Now Im into the Medical Terminalogy stage and well thats taking me some time. Its hard to find time to study all those words between Noah and work and everything else in my life. But I need to work on that!

Well life seems to be doing good. Finally! My little guy is striving! And I pray to God every day that life continues down this road instead of the bumpy one I was following when he was first born.

We love you all!

Hello Everyone!

Well Noah and I are still doing pretty good. This week Noah is going To have a test done on Friday at SMMC to see if his Nissen Fundacation is still in tact. We are wondering if it has come undone because he is burping and when he retches things have been brought up through the mouth. Neither one of these situations are suppose to happen. So we will see what the results have for that. Tomorrow we are going to see the neurologist because his seizure activity has began to increase again. I will keep you informed. I'm sure its nothing to worry about. He is probally going to start him on the other medicines sooner that is all.

Tonight he is all full of smiles and it is so good to see on his face. So talkative and happy. I wish this baby was around 24/7. But I love him no matter how he is. My little man has had a tough life so far. Thank God he is as strong as he is!

Well thats all for now! Good night. We love you all!

Striving!!

Well Noah is still doing good. He is growing like a little weed. Got weighed today and he now weighs 14lbs 7 ounces! He loves to eat now. Cannot feed him enough. Still taking everything by bottle! We only use the tube for venting and medicines! He gets the advantage of not having to taste them! LOL! We both ended up with the flu this past week. It was aweful. I have never been so sick in my life. I couldnt keep anything down and had to go to the ER on Wednesday and have fluids pumped into me. Noah got it on Thursday and we were in the ER until 1am with him. But we are both better. He is still doing ok with lifting his head. He isnt fully doing it yet. But Physically therapy comes in every Thursday and we have Occupational therapy coming in now on Wednesday afternoons

Speaking of Occupational Therapy I have started an online College Penn Foster going to school to become an Occupational Aide. I figured we had such a difficulty getting it for Noah in York County that they must need help and it would be a good field to get into cause then I would be able to help Noah as well. So I'm excited and I started this week. I'm just waiting for my first books to come in the mail.

Noah has found his hands and always has them in his mouth. He has THREE teeth on top AND TWO teeth on bottom now. 5 teeth at 9 months old. I cannot believe he is almost 9 months. NEXT WEEK! Time goes by to quickly! He is finally looking into mirrors and finding interest! He is getting there. Finally!

Life is pretty good right now. Still working for CLYNK and its such a great company to work for. Very understanding. Very friendly. And I enjoy going to work everyday! I think I may try to stay with this part time when I get my certificate or degree for Occupational Therapy! Well thats it for now. I try to keep you all updates as often as I can!

We are Home Sweet Home

So the EEG showed that Noah is in fact having seizures. He is having what they call Infantile Spasms. Theses siezures are really hard to control. Right now they put him on a steriod because steriods have been known to help these siezures. Although I have noticed that he is having fewer of these episodes I have also noticed that the few that he has seem to last at least an hr. at a time. Which is an improvement but when he was having them before they were spuratic in duration some lasted only 5 minutes others lasted an hr. I'm not sure if its the medication because this is one of the side affects to the medication but Noah is extremely irritable. He screamed all day yesterday. He now weighs 13 pounds 12 ounces which is a big deal and he is teething again. Last week he cut his top front tooth and this week he is trying to cut the one beside it. So that could be another reason he is irritable. They say that there is two drugs that we could try. We are trying this one and I am praying and crossing my fingers that it works because the other option is injecting the other drug. It is only an injectable drug. I dont think that I could put a needle into my 8 month old son everyday. It was hard enough to put a needle into myself when I was pregnant. They say that these siezures he is going to have for the rest of his life. He will be on medication for the rest of his life. They could get worse they could get better. We have to wait and see and that is the hardest part. Nothing makes me feel so helpless than when he is rolling his eyes in the back of his head and jumping and there is nothing I can do but hold him and try to comfort him while he goes through the spell.
Can you believe he is 8 months old today? Where does the time go? Its been a long 8 months and hard but he is so worth it. He makes my life complete.
Good news!!! While we were at the hospital I asked if they had any results back to his blood tests and.....
His Fragile X Syndrome, Lissencephaly, Urine Organic Acids, Miller Diecker, and Chromosomes tests all came back with NORMAL results which means there is no evidence of these syndromes. Which is really fantastic news!!! I was having nightmares we were going to get bad news..... Thank the Lord!
This however means we dont know exactly what his brain malformation will consist of at this point. We went to the neurologist on Wednesday and he said that the part of the brain that is the most affected is the middle back part of the brain that controls all the parts of the brain. The speech, hearing, motor etc. That part is almost flat meaning that the nerves are not all there and instead of being ribbony it is almost flat. We dont know what this means for him it really is up to him and the Lord. Physically therapy and occupational therapy and all those special services will hopefully help. The neurologist says that it is going to be like he has severe cerebal palsy. He is trying to say that this happened in my sceond trimester but with as many ultrasounds that I had throughout my whole pregnancy and the end of my pregnancy you would have thought they would have found it before he was born. I am looking into it. Research is going to be done and we will find out.
That is all for now. Hope this finds you all well and happy. Please keep praying. I need a miracle and your prayers are helping....I have proof with this little piece of paper that says my son doesnt have any of these syndromes or diseases!
Love to you all. Keep checking I'm going to try to be better at blogging this year. I just dont get alot of time with my son because of work and life situations so I try to spend as much time with him when I'm home that I can.
He is doing very well holding his head up still needs a little work but he is getting it. Physically therapy is trying to get his sitting up on his own..and then we are working on getting him to roll as well....lots of work....she is hoping to see him holding his head 100% in a month.