Boston is only 2 days away!!!

So like the heading says "Boston here we come" (well not exactly what the heading says, but you get the hint.) Im so excited. But now the nervousness is kicking in. Trying to stay positive. Its going to give us more information- more answers. But all those struggles really make it hard for me to stay positive. Im so afraid we are going to get there and they are not going to have anything else to tell us. I sat down and researched the doctor he is seeing do there. He seems like he knows his stuff. So I really am hoping for the best. Im starting to write down questions I have. And hoping I dont forget anything. We leave tomorrow night for Boston and his appt. is Wednesday, January 21st at 8:30AM. I will update you all after.
Noah is feeling better. THANK GOD! I absolutely HATE it when he gets sick. I know Every mother hates it when their little one gets sick. But when Noah gets sick its so hard. When he gets sick its never just one thing.....another thing always follows that....and then another. So Im just happy that although it was Strep Throat AND phemonia he seems to be making a quick recovery. His breathing sounds better and I have stopped the Abuterol nebulizer....which Im happy about because I always hate giving him that because when I had a abuterol inhaler it always gave me the shakes and made me feel horrible. So thats overwith.
No signs of siezure activity since the other night.....phew........
He gets his last prednisolone med tomorrow morning....and then we are down to his usual meds, his antibiotic, and his pulmicort nebulizer once a day.
Started new term and I have high hopes for this term. My first class seems like it is going to be an easy one..... the class Ive been so excited to take "Intro to Special Education" really seems like it is going to be tough but I can do it. I know I can.
But life is better and I hope to keep it that way.
We love you.

Why does life always get tricky?

Well.... our little bump got a little bit bigger this week. Toward the end of the week Noah's breathing just wasnt seeming to get any better. Called the doctor and they put him on some Prednisolone to try to clear it up. His lungs seem to be getting better.

Last night he scared me. Im not quite sure how to explain it. But he got up in the middle of the night and seemed very excitable. But along with the excitability he seemed to have a small shake that went along with it. I ended up calling two doctors offices because the first doctor on call didnt want to help. She just wanted to tell me that she was sorry to hear about Noahs medical problems.....well, I dont need to hear that at that moment....I need to know what to do to help my son stop having a siezure....I need to know that what he is going through isnt hurting him. The second doctor office was very efficient and helped me through it. By the time I got on the phone with her he had started to go to sleep but she assured me that it wasnt hurting him and it was okay for him to be sleeping... and let me know that if I needed anything I could call anytime. If he repeated this today he needed to be seen at MMC by herself. So I didnt sleep very well after that. I was up constantly checking to make sure he was breathing. But today so far he seems to be okay. Unfortunately we dont know when to expect anything when it comes to his siezures. He has been without a spasm or siezure for about 3 months. That is exciting. Im not completely sure last night was a siezure but im pretty positive it was. I just hate them. They scare me and make me feel helpless......
We love you all.
Beth & Noah

A little "tiny" bump

So I first want to thank all of you that came to the Spaghetti and those of you that donated gifts or your time to help. It is all very appreciated. I cannot express the words of gratitude that I have. You have all helped to make it possible to get Noah to Boston where I can only pray that we will get the answers that I have been fighting for for so long. We had a good turnout at the supper and with all the donations and the cost of the meal, raffles, and 50/50 we happened to raise approx. $2500. I also happened to recieve a phone call that morning from a gentleman that does a coffee house in Kittery who told me that he couldnt make it to the dinner because of the coffee house program but that he wanted to let me know all the proceeds to the coffee house was going for Noah Saturday night as well. I am so taken a back by all the generous people in this world. And thrilled that they too see the need to get my little boy to Boston and will help in so many ways. God Bless you all. And Thank you from the bottom of my heart.

Now, Monday night Noah started coughing badly. He didnt sound like he was breathing very well. I had Dr. Grammy come over and listen to his lungs with her stethescope. She heard a little weezing but said it wasnt horrible. I decided to take him to the doctors on Tuesday morning. Come to find out Noah has decided that since it was so much fun for mommy last week that this week he would try the whole Strep Throat thing....and to top it off would be very close to having phemonia. So now he is on an antibiotic, Deselym(for his cough), Pulmicort Nebulizer (once daily), Abuterol Nebulizer (every four hours), and his regular meds, oh and Tylenol for his fever. But it does seem to be helping. Monday night he was up crying all night from 11pm till 5am. Last night he got up once and he seemed to come around even after the first of the meds. His appetite has increased thank god. When they weighed him on Tuesday he had dropped back down 2 oz. Which is hard to believe after him eatting so well....but the last few days have really been a struggle to get him to eat anything. Which I cannot blame him if his throat hurts as bad as mine had.
So its a little bump in the road....but one that we can glide over slowly..... I can handle the small "tiny" bumps. Well I guess I can handle any of the bumps lol that is what the last couple years proved to me....but I must say that I like the small "tiny" bumps better.

Till next time...................................................................................................We love you all!

Hello 2009

Sorry it has taken me so long to update my blog. I've had a busy couple of months. Noah is doing better. We seem to be on a road less bumpy finally. For the past month Noah seems to be hungry ALL THE TIME. Which is wonderful after fighting him to eat for so long. He seems to want a bottle every hour. Which can sometimes lead to me not getting much accomplished for the day, but it is so worth it. After being sick from his flu in October he had lost 2 pounds and I was very upset about it. But once he recovered that is when he really started eatting. We took him back to the doctors a week later for a weight check and he had gained a whole pound in one week. We have even been able to add the fruits, cereal, and veggies back to his diet to try and make him feel fuller longer. He does okay with it but we struggle with him spitting alot of it out while feeding him. The speech therapist and Occupational Therapist is really going to try to help me with this for the next couple of months.
He is still having trouble holding his head up....but is doing extremely better with this. He does seem to hold it in place for longer periods of time. I cannot wait for the day he is holding it up. And I know with patience it will happen. He got a toy for christmas that is a mirror that you sit in front of and it lights up and plays music and he seems to really enjoy it. He even trys to hit the buttons himself...with a little help from mommy.....of course.
He is becoming more vocal and smiles more often. Although lately he has seemed to be cuddling a little more. It might have to do with the fact that we have moved out of my parents house and he seems to be getting a little more quality "mommy time."
Yes, Noah and I have moved out of my parents house and moved in with my boyfriend and his two girls. We have been there for almost a month and things are going extremely well. His girls absolutely love Noah and help me out with feeding him and holding him. They try to play with him but there isnt a whole lot that he can do yet. My boyfriend loves him like his own and helps me as well. He is even trying to get him to become a football fan. They sit in his chair at night both cuddled in the same blanket watching the game. Its cute. And its so nice to have that kind of influence in Noah's life. And although I struggle with letting someone take charge of Noah other than myself or my parents Im really trying to and Im enjoying having someone there for me as well.
School is a struggle this term with so much going on. So many changes...and the weather. But Im still trying and I know that I will get back on my feet. One more week of this term...and if I dont do as well as I have been doing. The next term I will start fresh.
Well Boston is getting closer and closer. Im excited to finally get him there. January 21st. Its been a long time coming but it is almost here. I just want some answers. I have fought a huge battle and with the fundraisers I think that I am finally going to get some where. We have a bottle fund that is through CLYNK (my work). People get green bags from me and fill them up with Maine redeemables. Then the bags get dropped off to any Hannaford with CLYNK inside them. The money gets put on a card (Noahs Acct) and I've been saving that for his Boston Trip. We are also as most of you know having a Spaghetti Dinner this Saturday January 10th from 4-7pm at the Alfred Parish Church in Alfred Maine to raise money to help pay for his visits to the Childrens Hospital in Boston. The meal is $6.00 and is all you can eat. I want to take this time to Thank all of you who have been supportive with this. The support and donations and help is appreciated more than I can express. It means a great deal to finally get him to a place that has been known to help children. A place where they may have seen his condition or something similiar and give us answers that nobody else seems to be able to give us.
Life seems to be going smoothly at this time but 2007-2008 showed me that I can get through most anything and that my friends and family are really supportive and can help me through anything that is thrown my way. If it wasnt for the support I dont think I would be where I am today. The support helps me to be the strong person that I have become. Thank you all... and dont worry my New Year Resolution is to try to be more faithful to updating this blog...lol...
Love you all.

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.