Another Bump in the Road

So Noah was doing ok until he got some sort of flu bug. We had still been having trouble with his feeds but on Friday night he started retching more often and had very loose stools. And he wasnt keeping anything down. Saturday morning he retched again and had a temp. of 100.8 and has been running a small temp since and not tolerating anything but pedialyte. Last night he did very well with the pedialyte and this morning I switched back to Pediasure because his fever had dropped and he was drinking the pedialyte very well. As soon as he drank all of the second pediasure he started retching. Poor little guy. Im wondering if he could be having a reaction to the pediasure considering when he was younger he was allergic to both milk and soy and pediasure has both in it. I keep bringing this up to the doctors but they dont believe me. Im going to keep fighting.

We put Noah in his halloween costume the other night and took pictures. He looks so adorable in his costume. He is my favorite little Giraffe! And Im happy that we are home for halloween this year.

Saturday I also got wonderful news in the mail. I opened a letter from the Department of Health and Human Services and it said that my case was closed and that I was a wonderful mother and I had nothing to worry about! Phew!!! Life is going to start getting better I hope now. I cannot wait for this term of school to be done. This class that Im taking is a lot of work it feels like I have had projects for each class for 3 weeks now. It probally has to do with the fact that I missed so much school in the beginning of the term...but I dont think that is completely it because I have heard others complaining as well. I do enjoy the project and it gets me excited to have my own daycare in the future but its just my life is so stressful right now. But hopefully like I said once this flu gets cleared up we are on the right path again.

Well we love you all. And hope your lives are filled with good health and happiness!

Getting Back to normal

So when it rains it pours but things seem to be settling back down. Noah seems to be getting better and better. We are still struggling a little with his feeds but he is doing much better with them. Sometimes we cannot seem to give him enough and other times he doesnt want to finish them and when we put what he doesnt drink down his tube he retches until we take that little bit out. I think on top of everything else he is getting his molars in and isnt happy about that. Who would be right?
But it is so nice to see him playing on the floor and he has actually figured out how to make a couple of his toys play music. Its cute to watch him on the floor now because he actually pushes himself around in a circle on his back. One minute he will be possitioned one way and the next he is upside down from where I originally left him. He has decided that he is only going to roll over when he is on my bed or any bed but he is not going to do it on the floor. But he has been trying to roll more often. He is also starting to grab things more often. I can even get him to hold some of his rattles now for a whole minute. But its progress.
Venting his Gtube to get the gas bubbles out has become an adventure because he moves around way to much now...you have to watch his legs and arms while trying to also make sure the tube isnt filling to full....sometimes he grabs the tube and tries to move it all around. He wont grab his toys for long but he gets a hold of that extention and he isnt going to let it go. HAHAHA!!!

Besides having a stressful couple of weeks Im holding up as best as I can. Still going to school and doing my best. Im loaded with homework right now because I have a lot to make up from missing the time while I was in the hospital. But I changed my major to Early Childhood Development and want to start a daycare or become a teacher or something when I get done. I would really like to start out with my own daycare because then I could bring Noah to work with me and mom could go to work using her degree as well. But we will see. I still am working at CLYNK and it is an awesome company and they are so understanding with all my time off. Been there a year this month. I couldnt ask for better people to work for.
I should be able to update you all more often now for it is easier for me to get online now. Dad got wireless internet and he fixed my laptop so I am up and running and online now.
But anyway my little boy is trying to get my attention and he wants out of his bouncer for a while. We all love you.

More of a mess...

So Noah was released from the hospital Monday afternoon. We didnt really get our answers to why he is like this but he does seem to be better. thank goodness... Monday was hell. The hospital came in and told us that he had lost a total of 1 1/2 pounds since we were home and that we were feeding him the wrong amount. Although what we were feeding him was the directions that we left the hospital with the last time, the amount that was given to us was wrong but it was my fault. The doctor came in and told us he had looked at the last discharge papers and what I was telling him was right BUT..... they decided to call DHHS on me and report that I was starving my son on purpose....I was not giving him the nutrients he needs and that was the reason that he is still failure to thrive.
I had also suggested that we do the Modified Barium Swallow test done again. This test was the test that showed that he aspirates the last time we had it done. I was thinking that if we had this done and it showed he had improved that we could stop using rice cereal in every bottle and this could help with the constipation issues. The minute I suggested this test the doctor was down my throat that if he was aspirating at all WE COULD NO LONGER FEED BY BOTTLE. Well I decided that I was fighting enough with all his other problems and they needed to find the reasons for why he wasnt comfortable so after fighting and fighting that day I refused the test. They tried to sideblind me by saying I needed to have the test I couldnt refuse...finally after I told them I was his mother and I had the right to refuse any test...they decided to try to sideblind me by telling me that they wanted to do the test to check his recent surgery. In which they can check by doing a regular barium test through his Gtube by which I told them they could do that test. But after telling them that they had no right to call DHHS on me and if they did I would contact my lawyer they decided that this meant we needed to be discharged.
I tried to ask the doctor if she had any recommendations for a new pediatrician because after Fridays visit he was no longer going to see Dr. Patraitis and she turned around and said "I recommend Dr. Patraitis." After telling her again he was not going back to her and asking her if she could recommend someone else she replyed with "Look it up in the phone book."
So on Wednesday DHHS showed up at our door and said the report was sent saying that I dont give my son the right nutrition and that I refused the barium swallow which was a harm to him. After explaining to the DHHS worker that he has had that test done already and we have been told that although it wasnt recommended we could feed by bottle as long as it was thickened and that my son needs his bottle. He is 17months old and has been bottle fed since birth and will not settle without the bottle. She did agree that I was right about not being able to take a bottle away from a baby who has had it since birth. At the end of her visit I was told over and over again that I shouldnt worry when she left and that she didnt see any problems. But she had to continue with the investigation of the names I released to her and the doctors but in all hopes this should be taken care of by the end of next week. I hope so. It has been a very stressful week and my stomach is turning so much that I cannot eat myself. The good news is I lost 3 lbs last week but it isnt healthy for me to be this stressed. SO keep praying everyone and I will keep you updated as often as I can.
Noah is feeling better and is almost back to himself...we are still having some issues with his constipation and fussiness but not nearly as bad as last week.
Hopefully things will start looking up and I need to find doctors that will actually listen and want to help us and not find blame that doesnt exist.

Road is getting less bumpier

So last night was better....finally we both got some sleep. Noah slept till about 6am this morning uninterrupted. Which was so reviving for myself and himself. At 6 am he was having a crying spell but I was able to console him and then him and I fell back to sleep in my bed till about 8:30am when the doctors came in.
Today he seems to be himself. We have had a few crying spells but nothing like this week and he is full of babbling and sticking out his tongue, and full of those smiles that I cannot get enough of. He took a 2 hrs nap this afternoon, in which I joined him with. And this is a huge improvement because we were lucky to get him to sleep for 20 minutes this week.
Although the doctors are still unsure of why he is this way. They think it could have been a viral infections that started it and after being up for so long his body was so sleep deprived it couldnt figure out what to do with itself. I'm not sure that is completely what happened....I do think it has a lot to do with his constipation issues and now that we have got him so he isnt so backed up things are improving....but we need to find out how to fix it so it wont happen again. I told them this morning that I want to talk with his GI Doctor before we go home because it was important to get him so he is pooping before we go home and this starts up again.
Im also looking into trying to get them to redo his feeding study that told us he was aspirating to bad to drink from a bottle. The speech therapist said the last time we were here that she thinks it would be a good idea to redo it because if he was aspirating as bad as it looked the last time we would have more problems with phemonia, etc. She said growing can change things and it would be something we should get done again. And if we have it done and it looks like it has improved then we could stop putting rice cereal in his bottles and this could improve his constipation.
Well at least my little boy is feeling better and we are both getting some sleep now.
They have me feeding 70mls into him by bottle today. And the first bottle he only did 45mls but a half hour before we had just taking him off the pump (20mls an hr) and the second bottle he had the full 70 mls. Now its time to go feed him again.

Back Again

So Noah did well out of the hospital for 6 days. He was so happy and moving all around. He was better than I have seen him in a long time, and then our excitment went down hill. Since Monday he has been inconsolable night and day. We have tried everything and he was just in pain. Wednesday night we took him to the Maine Med ER because he was crying all day and night time seemed to get worse....well until we got here that is he fell asleep on the way here and stayed asleep the whole time. KIDS! He slept until we got in the driveway and again he started screaming. Thursday we took him to the surgeons office and they said his incision looked good but found that he was EXTREMELY constipated. They gave him an enema and that seemed to help until 11 pm that night and then he was inconsolable again.....falling asleep at 10pm and waking at 11pm and crying nonstop until 6am. I tried the swing, the vibrating seat, the rocking chair, mommy's bed NOTHING helped.
So Friday I took him to his pediatrician and she was no help. She told me that I needed extra services in the house because I couldnt handle my son by myself anymore.... she tried to tell me he was crying because of his ear infection (although he has had many some double ear infections and never acted this way) and she told me that it was his neurological problems causing him to be up screaming all night and I needed the neurological doctor to prescribe me a sedative for him.... not happy.... looking for a new pediatrician......
Took him to ER last night because everytime I feed him the pain seems to get worse and whether I feed through the G tube or the mouth it doesnt matter he doesnt want anything to do with drinking. They did tests, chest xrays, looked in his ears -the same one the pediatrician looked in and said was infected- but they said his ears were beautidful.... He was dehydrated and they hooked him up to an IV. Then at 3 am they came in and said...ok we want to give him 100cc more and then you can go home....ummm.... Why hydrate him with fluids, send us home when he isnt drinking bottles, hes in pain....just so monday we can come back because he is dehyrated again because he isnt eatting..... They decided to get the pediatric doctors in the hospital involved....go figure.....
After fighting doctors for 5 days and 7 hrs last night into this morning...they finally agreed that I knew my son and he was in fact in pain and maybe they should admit him and try to come to conclusions to why he isnt eatting.... and why his is not himself.....
So 60 hrs of no sleep, fighting doctors for 5 days, we are again admitted to the hospital to get answers.... not that I want to be back but I dont want to see my son in anymore pain. This last week has been hell for him, for me, and for my family. We dont want him to be suffering in pain any longer. So I will sit here until we get the answers we need.
They have him hooked to the pump right now and are doing a small amount continuously (20mls/hr). Tomorrow they are going to start increasing it slowly to find out when he cannot tolerate it anymore and then we are going to work out a schedule. They dont know why he is in pain they are hoping to get the GI Doctor in to see him, the nutritionist in to see him, and they are also wondering if maybe he just has a viral infection. But we are going to get answers this time.
Keep you all updated.
Love to you all
Beth & Noah

Home Sweet Home

Today is the day we have been waiting for. We are all packed up and almost out of here. Just waiting on a few more things. He had a barium swallow test this afternoon and everything looks good. He is feeling much better and is in a small amount of pain. And we have a feeding schedule in place that will make him comfortable until he can tolerate his normal amount....hopefully in a couple of weeks. I will keep you all updated. Thank God we are almost on our way home.
Love you All

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....

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.

Back Again in 2008

So hear we are again. We have managed to find our way back to MMC. Noah is still doing very well with his feeds- drinking all 120-130mls by mouth. But recently I told you that he was having spells in which he would roll his eyes and jump with his arms. Well I finally got tired of the doctors telling me to wait. Last night he had 5 spells in 6 hours. So I called the doctors and brought him to MMC Emergency this afternoon. After video taping his episodes and showing this to the doctors they think Noah is having seizures. Tomorrow they are going to hook him up to an EEG (electrodes that tape to the head to check for abnormal or seizure activity. Most likely we will leave here with Seizure medication because the doctors are pretty certain that it is seizures.....
Things like this really upset me...I've been telling them for almost a month about these spells and they kept passing it off as nothing....."gas" and didnt want to bring him in and see him sooner....now almost a month later - siezures! Hello!!! Doctors!!!! It makes me so outraged inside....to have to always fight and always be proved right and they should have listened sooner.
Alright well it is off to that comfy little sofa bed again (Kidding not comfy......lol) and I'll keep you updated. We love you all and hope you all had a wonderful holiday season. Noah and I did.
Will keep you all posted....
Hope people still check this out....I know some do.
Love to all
Beth