Happy Holidays

SO...... it always gets to be around this time of year and I become the world's most horrible blogger. Life has been hectic! I know its not an excuse but in my defense with the amount of sleep I've been getting lately its really quite amazing that Im still standing and getting through the day.

Noah health wise (knock on wood) has been great. We had one episode about a month ago that he had a severe ear infection and a viral infection that sent his heart rate over 200 and his tempature over 104.00 degrees and we got admitted into the hospital for 4 days. They precautioned him and thought he might have H1N1 and after many needles they finally got blood to result in a negative for the flu. We went home and became a germafobe.
So we have spent a lot of time staying in the house. I go around the house with Clorox Wipes at least once a week, and have a bottle of GermX next to the door so that when we walk through the door, thats the first thing we do.

I say Noah's been healthy...which is the truth. We are struggling with sleeping. Im not sure what is going on. Not that Im counting or anything but we have gone 23 days where we put Noah to bed at 10:30pm. He wakes at 11:30 either having a small siezure or not. Is awake for 1 1/2 to 2 hours and then is up every hour after that. Out of those 23 days he has slept through the night 3 times! Im exhausted and Erik is exhausted. I have finally broke down and called a company called MAXIM that provides Night Time Nurse help. We are going through the process and hopefully will have a nurse coming into the home sooner than later to help me at night. I have mixed feelings about this but I know that I cant keep going without sleep...Im so close to just running straight into a wall!

Family life is going ok. Stressful because we are both tired and can get angry over the smallest things. But I know we will survive. Having the big family I've always wanted is nice and I love it. Erik truely completes me and makes me happy. He is a great dad to Noah and I'm happy I opened my heart again.

SO in the event of Thanksgiving being tomorrow.... I'm thankful for having my big family I have always wanted, Thankful for Erik being my rock and love of my life, thankful for Noah and that this year I think has been all and all easier than the last, and thankful for friends, family, and all of you that support us each and everyday and make all our struggles a little more easier knowing we are loved and thought about. THANK YOU ALL! WE LOVE YOU.

Home Sweet Home Again

Well Noah and I were able to come home yesterday afternoon. His flu swab came back negative! Thank Heavens! He still isnt quite back to his normal self but each day he seems better and better. This morning he seems quite sleepy, but the poor guy has gone through so much. He slept ALL night last night - he must have been relieved to be home too. I know I was. The doctors think that he just had a Viral Bug that wasnt the flu that just hit him really hard. Hopefully thinks will get better quickly. Going to spend the day at home for the next couple of days and let him rest and relax.

Another Visit to MMC

So we have been doing so well for such a long stretch. But thursday Noah started to become fussy and aggitated. Took him to the doctors and they said he had fluid in the right ear and they sent us home. Sunday he was really fussy and wouldnt sleep. Took his temp at 4am and it was 101.8 gave him tylenol and took it again at 9am. It had only dropped to 100.4. Took him to his pediatricians office. They looked in his ears and said "his left ear is worse than I ever have seen it." By the time I got him home and gave his his meds he was breathing funny. I hooked him up to his pulse oximeter which read that his oxegyen was 83-89%. Called Ped. told me to bring him to ER. On the way to the ER his reading got better 92-95%. So I called back and she was ok with her if I took him home but if his levels dropped again I needed to bring him. Got home and a hr after his heart rate started increasing over 200. Took him to the ER and they admitted him immediately. His temp was over 104.

After using Noah as a pin cushion they finally got blood from him and his culture looked ok. The took urine and that looked fine. They swabbed him for the flu and that I was just told takes 72 hrs to get back the results. So Noah and I are in MMC yet again. The nurses and dr's need to robe up and put masks on before they enter the room. He is under precaution. Looks like we are here till Thursday probally..ick...

He does seem to be better today. He does seemed to have broke his temp. but he does still look pale. He had a siezure at 2am this morning and it lasted for about 6-7 minutes. But that is to be expected during illness. Today all he wants to do is sleep. But sleep is probally good for him. Although as I write this message he is in his crib kicking his feet and smiling. And he loves flirting with all the pretty nurses. Typical boy. LOL

Update

Noah has made for a couple of crazy weeks. He started having siezures again two weeks ago. These siezures are different than the ones he has had in the past. His whole body twitches, he doesnt breath very good, drools, and winces his eyes. Brought him to the hospital thursday night and they increased his meds and did a medicine level check. Friday got the results of the levels and they were in the correct range but he was still having siezures. Took him to MMC again and we got there at 2pm. At 4pm we were told he was admitted, at 6pm we were told the bed was ready we just had to wait for a Pediatric doctor to come look at him, 8:30pm we were still in the ER and I told them that Noah gets siezure meds at 9pm and I didnt want the late can you order them. 10:15pm he still had not got meds and we were still in the ER. I went out to the nurse and said "where's his meds they are now an hr and 15 min late?) and she turned around with an attitude and said"Im doing my best to accomidate your needs..... I told her she wasnt and told her if his meds were not given to him by 10:45 we were leaving because he could get better care at home or a differnt hospital. Nobody came....we left./// we hadnt seen a dr. since 3:30pm.

He has been doing better. WE had a 24 hr EEG done last thursday thru Friday. The results showed abnormal epileptic waves on both the left and right sides of his brain but no real siezures. The neurological dr. says that the hospital is revising some equipment and it should be done by next month. Then he wants Noah to go into the hospital for three days to have an EEG done for that long to see if we can catch some real siezures,etc. Here is a picture of him all wrapped up for the test.




His other genetic testing came back normal. So we dont have to worry about that. Phew! But now there isnt anything more to test for. So we still dont know why he has these issues. So its comforting but frustrating at the same time.

I ended last term in school with a B+ average. Hip Hip Hooray! Now we will see how challenging two online classes are.

In the job category life isnt so good. I found out last week that as of Oct 4th I with 57 other employees are laid off. CLYNK is eliminating our positions and is going to be self service.... so now no pay check for me. I think Im going to try to watch a couple children in the home but I really dont know. MY schedule is pretty full with Noah and all his appts. I really dont know what to do.

But life is good. And Im really going to try to keep updating this better than I have been. I know a lot of you check it to see how our life is going. We love you and keep praying...the prayers are helping....

Last weigh in Noah weighed in at 23 lbs 4 oz!!!

Looking Up!!

So life for Noah and I is still looking up. This morning we actually got the "Special Tomato" chair that we have been waiting for. It was donated to us by a non profit organization that helps children with equipment. Noah sits so good in the chair.... I can finally get rid of his infant chairs. This gives him more room to gain head control because it sits more upright. It even can come off its base and be hooked to a chair like his very own booster seat! Woohoo... now he can sit at the table with us at dinner! YAY!!! Did I mention he looks terrific in it. Lets's show you, shall we!

Noah is doing so well. He got to see his old Physical Therapist today for the first time since she has been back from Maternity Leave and she couldnt get over how much he had improved. And it felt so nice to feel myself be so proud of him that my eyes were glazing over with tears. I've waited for this for so long. The improvements in just the last two months have been incredible. And the help Im getting now is great. We got the Special Tomato (havent yet figured out the name since I've never seen a brown tomato before LOL) we have a stander ordered and they are working on looking at strollers for him to try him in. Im so glad things are looking up.
We still havent heard any results of the other genetic testing that was done a couple of weeks ago. I'll give them one more week and then call.
My class is about over and I think I did pretty well actually. I'm going to say probally ending with a B average. We will see by tuesday so I will let everyone know. Im taking two classes next term but Im going to continue with the online thing...it is easier and gives me more time with the family.
The girls started school tuesday and Im enjoying taking them to the school bus in the morning and picking them up. Their excitement brings me back to when it was me getting on that bus (LOL) but Megan is excited to have me here to do her hair in the mornings....which I'm having so much fun with....MAarrisa isnt into much girly things but I did get a headband in her hair this morning...we will see if its there tonight.
Work is work.... still just one day a week. I got two days this week. And although the money sucks I kinda enjoy it because it gives me more time with Noah. Erik's sister and law just had a baby and we went and say her yesterday. The baby wieghs 6 lbs 9 oz and is so cute...but the whole time I looked at her all I could think was "Noah was 6lbs 11oz) I dont remember his being THAT little...where'd the time go? I blinked!!!!

Well thats it for now. Wanted to share with you the new and exciting "Tomato Seat" and give you an update. Im going to try to get back to blogging often.

Did I mention Noah is weighing in at 22lbs 14 oz!!! Woohoo!

Its Been A While

Well Summer has got the best of me and I've been really busy. Noah is doing so well and I've been enjoying every minute. Going to the clinic this summer for Physical Therapy has turned out to be an awesome experience. Noah is doing so well holding his head up. The physical therapist is teaching us many ways to help strengthen him up. We work on sitting and just last week we began the process of ordering a stander for him. He hated the stander by the way but its going to be good for him to have. He needs to start standing on his legs so that he doesnt lose the muscle he has and can build more. He is growing like a weed took him to the doctors yesterday and he weighed in at 22 pounds 14 ounces. Almost 23 lbs!!! For a while I didnt think we would ever get here but we are finally gaining weight on a regular basis!!! Woohoo!
This summer I have taken Noah to the pool swimming many times. He loves it. One of our visits he was almost in the pool for 2 hrs!!! We bought him a float and with some help he sits in it and talks and loves it. Our summer has gone well. We have had some episodes with siezures recently where he stopped breathing on me once but I called the doctors the next day, they had some blood drawn and his meds needed to be increased. All in all he has had a healthy summer (knock on wood)
Ive enjoyed my summer as well. Only working one day a week gives me plenty of time with Noah and I'm going to school online this term and next. I only took one class this term but I have signed up for two next term starting in Sept. I really am enjoying the online classes. Its easier for me and I get to spend more time with the family.
Well gotta run.
Hope everyone is happy and healthy. More soon I promise...with some recent pictures to post as well.

Been bad at posting...again

So life is very hectic..... I thought it was going to slow down after work dropped me to one day a week but it does seem to have slowed. Noahs PT OT Speech fill most of the days and then doctors appts...etc.
But Noah is doing super good with his PT sessions. I cant believe how much improvement we are having. He is getting big 21 pounds 6 oz now. 33 1/2 inches tall.... my boy is going to be tall I think.

Well.... I can say that since Thursday I have had a very good excuse for not blogging. Thursday night I started having flu symptoms.....high temp, cold chills, cough. Friday it got much worse temp between 103 - 104. Still stubborn was just the flu and I wasnt going to the doctors just for the flu. Saturday we went and decorated for my grandparents 50th Anniversary Party and although I felt fine when we left the house, when we left the decorating and started for home I again started running a temp and this time I felt like someone was sitting on my chest. It almost felt like I was having a heart attack or something. I went to the hospital. Need less to say after some torture- swine flu check, xrays. I somehow have a HUGE case of Walking Phemonia. My whole left lung is full....and I cant stop coughing, and Im weak, dizzy, etc. I never wish anyone to get this its horrible.... at least its not contagious because this week Ive been so worried Noah was going to get what I had.
But the worst part of this is WE LEAVE FOR VACATION IN 2 DAYS!!!!! HERSHEY PARK!!!!
So for Today and tomorrow Im taking it easy and resting and hoping that by Thursday Im feeling much better. The doc says it takes 6 weeks to feel 100 % I just want to feel 75% at least.
The only good news is Ive had no appetite and have seemed to lose 10 lbs this week...

LOL
Love to you all...
talk to you all when I return

Noah!

Well life has been so hectic.... and I have been bad at blogging these last few weeks. I will try to do better.
Noah is doing so good...I could jump off my chair right now. He is holding his head up so much better. The new physical therapist suggested to buy an exercise ball and sit him on it as much as I can. We have averaged twice a day and Noah loves it. He sits on top of it while I hold him and then I lay him on his back and we do Baby sit ups where he pulls himself toward me into a sitting position. Ive seen so much improvement these past few weeks. We bought some 3rd food baby food like the speech therapist suggested and he does so well with this. Now we are fighting him to drink his bottles.... the doctor thinks its because not only does he like the solid food better but he has four teeth coming in...his two year molars!!! And you know Noah he needs to do four teeth at a time. Its been like that since the first four teeth.
LOL!!!
Still havent got the results for my testing. Should get it in a couple of weeks. Will let everyone know.
School started back up and Im actually enjoying the online class more than I thought I would. Part of me wishes to just continue with online next term. We will see what happens. I know I should at least take one class at school.
Work has really brought my emotions on this week. Since I had to call out on Father's Day weekend cause Noah was admitted again into the hospital they have decided to drop my hours to one day a week. ONE DAY! If I call out that one day Im scheduled wether Noah is in the hospital or not * its good bye job*. This stresses me out beyond belief because we cannot really aford this. At the same time I dont think its fair at all...and there is NO WAY I would EVER choose my job over my son. So I just have to hope everything works out...but its more stress.
We brought Noah to the fireworks this year. We went to Sanford Fireworks on Friday and Portland on Saturday. Both times he slept through the entire show and woke up right after and was ready to play.... it was cute.
Three weeks till Vacation and I cannot wait. The girls are soooo excited. They know we are going to PA but they dont know why? They are counting down the days. ITs going to be so much fun but at the same time we are leaving Noah with Mom and Dad while we go and I have never left him for that long before. I know he will be in good hands BUT..... 5 days without my little guy will be tough for me.
Well thats it for now.
Love you all.

Update

So we went to Noah's Genetic appt on Thursday. His blood test came back, as all of us know, with a small piece of his Chromosome #2 missing. Researchers still do not know very much about the missing piece of genetics. They did blood work on me to see if I also have the same missing piece in my DNA. If results come back that I too have this missing piece researchers will know it runs in my family and it has nothing to do with Noah's development. If my DNA comes back normal they need to test Josh. IF we can get Josh to agree to testing and his DNA comes back with the same missing piece we know it has nothing to do with Noahs development. But if both Josh and I are normal than it could possibly play a role in the reason for the way Noah's brain developed.
So Noah spent the night in Maine Medical Center this weekend. Siezures have come back. He hasnt stopped breathing but he is having head tremors and falling asleep after and its really hard to wake him up. They observed him for the night and increased his meds, then sent us home Sunday night. I thought this was ok until we got home and he began to act like he was when I took him in. He doesnt have a follow-up until July 8th with the neurologist.
Took him to the pediatrician today because he was still having tremors and being irritable. He has also been sleeping alot. They looked in his left ear and its really infected. They prescribed medicine and said this could be part of the problem with irritation and the head tremors and that we were going to treat it this time. Because he has had so many ear infections in the past months we are hoping that he doesnt have anymore after this one. If he does have more the pediatrician is going to send us to an Ear, Throat, and nose DR and we are going to talk about tubes. But putting a child with siezures under anestesia is very risky.... lets hope he has no more.
Well, school vacation for the kids starts and my school vacation kinda ends. Next week I start back up but Im only taking one online class. I will return to school in the fall. Thinking about taking one class at school and depending on how the online class goes this summer maybe one class online.

Well thats it for now....

Overcame another bump....but still working on it!

So life has been going very smoothly lately. until this weekend. Noah spent Saturday night into Sunday afternoon back in Maine Medical Center. He was having siezures again. Thankfully he was not having apnea with these spells but he went to sleep for a long time after and we couldnt wake him up. So they admitted him for a night to observe him. Around 430 yesterday he seemed to be back to himself, after they increased one of his meds. He still seems more aggitated today and not quite his complete self but he is doing ok. Keep my fingers crossed.
He is doing very well with PT. He has to go to a PT clinic in Sanford for a couple months because our PT is on maternity leave. I was very nervous at first because usually it takes a while for Noah to warm up to someone before finally doing work for them. But first visit he worked the whole visit and was very cooperative. Today we had another visit and he worked for about 45 minutes and complained a little more but he just got out of the hospital last night.
He is doing so good lately. He wants to sit so bad. He loves to be sitting up. When he is in your arms he is pulling himself foward all the time...he is happy sitting up against the corner of the couch or chair. Its exciting to see. Hopefully we will be sitting up soon.
Im exhausted today. Saturday they didnt get us to a room until 4am and yesterday it wasnt really hitting me but today....wow..... I could sleep all day I think.
Well today is the day for my Genetic testing. Im super nervous. What if the test results come back and say Im the reason my son didnt develop right? I dont know. I need to know....but I dont want to know..... We will see what it says...
Grammy and Grampa Quint (Great Grammy & Great Grampa to Noah) come to Maine today. We are excited to see them.
Well...thats it for now.
Love to you all.

The sunshine is out!!!

So last week was one of the toughest weeks for me in a while. I had some health issues that caused me to be in quite a bit of pain. Tried to be strong and deal with the pain but finally ended up going to the hospital last Sunday night. Pain killers and rest was prescribed and life is back to normal again. Erik was wonderful while I was sick (like he is to me *mostly* everyday....cant get his head swelling...LOL) helped me with Noah through the nights and with anything else I might need.
Noah has been healthy the last couple of weeks (knock on wood). Took him to the doctors for a checkup on Monday and no ear infection, and clean bill of health. He is gaining weight and is so happy lately. The smiles he is bringing are so wonderful and it is so much fun. Wednesday when the speech therapist was here he tried to say "more" and at the same time brought his hands together like he was trying to sign "more" as well. So exciting. I bought him one of those mesh things that you put fruit and etc in for babies and they can chew on the food without choking on it. WE are going to try that Wednesday with the speech therapist....with strawberries.... yummy. Noah is doing very well with his head control lately. I have seen a lot of improvement and hope more continues.
His sleeping has improved lately and seems to be only getting up twice a night lately. Erik gets up the first time with him and I the second. Its nice to have the extra help. And its nice that he is sleeping more. He goes back to sleep at 530 AM usually and sleeps till 830-930 AM.
Life is good. Nice to have a break from school. Enjoying my time with Noah and the rest of the family. Kind of makes me not want to go back but I know I have to finish. So I will be going back.

Went back to the doctors on Friday. Trying to work on getting my sugars under control. Doctor put me on a different medicine. I couldnt handle the side effects to the first med. he put me on. Trying this new medicine and I really need to start buckling down on my wieght loss, diet, and excersise..... Monday I shall start.

Erik, the girls, Noah and myself celebrated Friday night. Erik and I have been together for 6 months now...cannot believe its been that long. We have had our good days, some bad days, but all that matters is that we are going strong and we are happy.

Love to you all

Love to you all

Team Noah!!!! And Life!!!!

So May 17th we participated in the 2nd Annual Epilepsy Walk 2009 in Saco, Maine.
Team Noah raised in total: $495.00
Alisha & myself raised money
Walkers included: Erik Goodwin, Marissa Goodwin, Cindy Quint, Charlie Quint, Matt Kearns, Alisha Phillips, Myself, Courtney Frazier, and Noah. Before the walk it was raining. I thought we were going to have a wet walk but right before it stopped raining and the sun came out for a little while. After the walk it began raining again. So weather wise it wasnt the best conditions but it stopped just in time and there was a decent turnout. Thank you to all the people who donated or participated in the walk. This walk means a lot to my family. Next year I hope to have a even bigger Team Noah!!

Noah is doing ok. He has had an ear infection for quite some time. Last Thursday, Friday, and Saturday he had to have an antibiotic given to him in shot form. Yes 3 shots in three days. The other medicine wasnt working for him, he ended up getting a double ear infection while on medication for the first ear infection. The shots seem to work, we went to his 2 year check up on Monday and he had no ear infection. Ended up taking him back to the doctors on Thursday because this week has been HORRIBLE. No sleeping....fussing all the time....not eatting..... thursday found out he had the beginnings of another ear infection and a viral infection.
Doctors dont really want to do tubes in his ears because of his siezures and the risks of anestesia...but if we keep having to give him shots, we might have too.

We got some more news on Noah this week. Dealing with genetics...Ive been pretty upset about it this week. I had another blood test done on him two weeks ago. Results came in and it looks like Noah is missing a tiny piece of his chromosome #2. There isnt a lot of research done on Chromosome #2 and to know more they need to get DNA from both Josh and myself. Im really upset that we have come so far and we are going to rely on Josh on wether or not we can get the answers we need. I hope he will step up to at least help us in this mission. Im scared he wont. I hope Im wrong.
Im getting my DNA work done on June 22nd so we will at least have some answers after that.

Noah seems to be having more siezures lately. The little shakes again. Been trying to keep an eye out. Nothing major lately...and Im crossing my fingers....but Erik has even agreed that he seems to not be himself lately. Staring off more and long empty stares...... I wish they would get under control.

Just using the O2 monitor at night. Had to stop using it in the car rides because his toes were getting sores on them for having the probes on them to long.

Thats it for now. Keep praying...siezures dont get worse.....Josh agrees to the DNA stuff...... I need answers for Noah and his family and love ones.

We love you.

Birthday Boy

Well this year we had a lot of fun with the little guy for his birthday. At his birthday bash on the 3rd we gave him a piece of cake and mommy helped put his hands in the frosting...after that first bite.....he LOVED it. We got a reaction from him this year...which made my day. He had frosting all over his face and on his nose!! It was so cute.
Then on Monday we took him to Mike's Clam Shack, Wells. The waitresses and staff all love him there. They are always so great with him. Well I bought an Ice Cream Cake and we brought it with us. After dinner EVERYONE in the restaurant sang him happy birthday.... and he loved the chocolate icecream.
I cannot believe my little boy is 2 years old already. We have been through so much and Im afraid there is so much more to go through. But every smile makes everything so worth it. I have a very strong little guy, and he makes my life so worht living.
He seems to be doing better. We have had no siezures for about a week now. He has been fussy and started running a temp on Sunday so I took him to the doctor's- I could have diagnosed it myself--- but another Ear infection. But I dont know what has got over him the last few days he has been so vocal and smiley...its been nice. Everytime he smiles I cannot help but smile myself.
I did get the oxegyen monitor last week. And I wish I could say that I have slept. Well the past couple days I finally have but before it wasnt him keeping me up I just couldnt sleep. Had a friend put a little kinesio tape on my bad shoulder to see if it would help and "man what a difference." And I've slept like a rock ever sense.
Tonight is my last night of class for 8 weeks. Im so excited. I need a break. I cant wait to spend more time with Noah this summer. Last summer I was working alot of hours and school. So it will be fun.
Thats it for now.... love to you all....keep praying for us....prayers help.

A whilrpool of emotions

So here I am fighting with doctors to get what I need again. I've been fighting to get an O2 monitor for Noah for a while now....but exspecially after this last episode. Im not sleeping well at night and if I keep driving the way Im driving 9always looking behind me at him to make sure he isnt purple) than Im going to get in a car accident. So Ive been really fighting....but the pediatrician office tried 4 places to get one for me and had no luck. So yesterday I went to his neurology appt and asked him. He said he wasnt sure how to do it but would look into it. Other parents have these monitors for their children? It shouldnt be that hard.... frustrated.
So the neurologist appt went ok. It kind have scared me a little bit. But thats how I live my life is scared. He says that we know that Noah's siezures are eventually going to get VERY HARD to control, and that this episode two weeks ago is just the begining. The EEG that they did in the hospital showed signs that the siezures are coming from the right side of the brain in one of the areas that are malformed. He said that there are many drugs that we havent tried that we will be able to try to control them with. But if the drugs dont work we will end up in Boston Children's or Mass General to try a diet treatment, etc. These siezures scare the **** right out of me. I cant even imagine worse at this time.... I think the siezures are the hardest for me to deal with. I feel like sometimes I can get used to everything else but no matter how long I deal with siezures I just cant become unfrightened. I guess that is why the Epilepsy walk that Im doing in a couple of weeks is so important to me. Hopefully one day they can find a cure or understand them a little more.

Ive been very emotional lately...and Erik would probally say (hard to live with lol). I am SO excited that Noah is turning two. But at the same time his birthday coming up sends me through whirlwind emotions that I probally shouldnt have but do. Its hard to have someone ask "how old is he?" and when you tell them "2" they look at you with a look that says "he doesnt look two!" Or yesterday a woman asked this same question and we gave her the answer and she came right out and said "does he have cerebral palsy?" Well.... no but yes....(thinking) and who's business is it of you to label my son..... I guess I just get a little testy sometimes. Dont get me wrong I celebrate that he is 2 and although it has been 2 VERY hard years for me it has also been 2 wonderful years. I love him more than words could tell you. He brightens me days and nights....and that smile could erase any pain that I have, or helps to diminish the stress that I sometimes feel. But at the same time I dont know why 2 is so difficult for me this year....is it my baby is growing up? what is it? Its hard to put into words some of my feelings. The other day there was a little boy at work with his mom, walking and talking....he was sooooo cute? and when I asked the little boy how old he was and he turned around and held out 2 little fingers saying "2" I felt like I was just punched in the stomach....and its been bothering me ever since. And I feel like its horrible of me to feel this way. Noah is precious and wonderful and he is my handsome little son. And I love him no matter what.... but turning two I just wanted to see him make a mess of his birthday cake this year....I wanted him to be able to help me open his gifts this year....I've been hoping for so long to just see my little boy sit up on his own..... I know Ive got to keep hoping....and I know one day he will do it..... but I guess its just a little harder this year.
Noah is turning two this year? Can you believe it? His mommy can't. Ive seen a lot of babies this last week...some that were his size when he was born and WOW.....they look like dolls..... LOL!
Well thats it for now. We are having Noahs birthday party this weekend so I've got to go help mom clean for it.... ITS TIME TO CELEBRATE NOAH.

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

A Short Visit

So Noah is doing ok. After his pediatrician appt on Thursday they said that his "right ear infection is gone." YAY right? Not quite...... well he now has a left ear infection while on an antibiotic to take away the first one. So we had to change antibiotics. We also had to prolong the prednisolone because his lungs sound Better but still not 100%. And today Noah didnt think that was enough for mommy to worry about....he also felt like we should go visit MMC again. This time for a little visit.
The last couple of weeks once in a while he would have a "weird" shake to his head while you were looking at him. Not a huge shake just one that if you looked close enough you could tell something wasnt right. Well yesterday they came more frequesntly and last night into this morning they seemed to be almost constant. So I took him to the ER. The pediatric neurologist said that it wasnt anything to worry about unless it got more severe. To call his Neurologist on Monday to see if he wants to put him on another med. He said that with tapering him off on his Sabril med his infantile spasms could be coming back or it might just be because of the pain of the ear infection. Either way if it was that little of a shake we had nothing to worry about. Well Mommy is still worried and its going to be a long weekend waiting until Monday when they will do something. Part of me is pissed that they are making me wait that long after waiting so long for his spasms to be diagnosed to begin with. But he assured me that they are not hurting him in any way so we will wait till Monday and cross our fingers that it doesnt get worse.
I was at termoil to take him to MMC this morning anyway, since our wrongly accused DHS situation but I knew that MMC had neurological pediatrics on site and I was not sure SMMC did. The neuro ped. that he saw today was the one that read his MRI in Oct. 2007 so I feel a little confident he knows about Noah a little and can somewhat understand him a little more.
Well.... I will keep you all informed and send a few extra prayers this weekend to the big guy upstairs....this mommy needs it....I dont think I can take much more going wrong this week.

Looking up.

Well Noah is back to his normal self because the sleeping through the night has stopped. He still sounds "junky/wheezy" but not nearly as bad as it was. We have a pediatrician appt for him later this afternoon, we will find out what they say. His tempature is gone and he seems to be acting more himself. I just want to get his breathing better. He just got done his Physical Therapy and did pretty well today for not feeling well.Will keep everyone updated.

Hope everyone has a wonderful day.

Getting back to normal

Well.... Noah has been extremely sick ALL week long. I dont think I have ever seen him this sick. There was a couple of nights where I thought for sure he was going to end up in the hospital. LAst night was one of them. He was wheezing so Bad! It was aweful...really scared me. Mom took him back to the pediatricians office yesterday afternoon while I was at work and they decided that although the xrays came back ok they were going to treat him for Phemonia anyway because he was wheezing horribly. The wheezing was causing him to cough almost continuously and the coughing and wheezing was making it hard for him to drink and get liquids. Plus he was still running tempatures in the 100's.
Well waking up this morning........ His temp is 98.6 he barely has any wheezing and he seems more himself..... thank goodness he is feeling better. Woohoo..... tough week.
School started Monday and although Im not sure Im going to like the teacher 100% yet, its something I really love to do....writting.....I should do well..... its an easy term for I am only taking this one class.
Well....thats it for now.....hopefully life will get back to normal soon.

Another Doctor's Visit

Took Noah to the Doctors again today. His temp was still high and he was very sleepy. Well looks like the little guy has yet another Ear infection and they sent us to have a chest xray to see what his lungs look like because he is wheezing too. Man what a week. Still havent got the results for the xray will keep everyone updated. Mommy is exhausted even though Erik gave me a full nights sleep on Saturday and Noah slept most of the night last night.....just a stressfull week I guess. Doctor thinks Noah has a couple more days of temps and should be on the mend. Lets keep our fingers crossed.
Well School tonight. One class....wont be bad.... be out by 8pm. Home and can still put Noah to bed.
Well thats it for now.
Beth

Update

Well.....Life has seemed to take a turn for the bumpy road again. But it could be worse I guess. Noah seemed to start to get sick on Friday. Coughing and "junky breathing", and small tempatures in the 99's. But Saturday morning it took a turn for worse. He woke up and was extremely HOT so I took his temp...... 103.3!!! Yikes. Called the doctor and he told me to give him Tylenol (duh!) and to wipe him down with a cool cloth. He cant have tepid baths because it would take the temp down to fast...we have to take the temp down gradually due to his siezures. Anyway that morning I took him to the doctors office and the doctor said that Noah has the beginning stages of Croup. All weekend he has this aweful cough and is running high temps. He looks aweful and is a little cuddle bug.... more so than usual. Still this morning his temp was 101.6. Will be calling the doctor in 15 minutes to see if they want to recheck him.
School starts up again tonight.....maybe.....it depends on how Noah is doing because Im not leaving him if he has a high temp. I hate leaving his side when he is sick.
Well thats it for now....I'll keep you updated.....
Got the shower steaming up the bathroom to take him in there to help his breathing....gotta run.
Love you all.

Changes

Well Life has a funny way of changing when you least expect it. I was getting used to Noah being on a smooth path.....and all of a sudden today BAM!!!! lets scare the crap out of Mommy! Noah was doing Speech Therapy with his Speech Therapist at 10AM this morning, when I looked at the TV for a few seconds. When I looked back Noah's eyes were glazed over with water and he was just staring into space. I instantly knew that he was having a siezure. But then it got worse. I noticed his lips were turning bluer and bluer. He wasnt breathing. He stopped breathing for 1 1/2- 2 minutes. I called 911 and as I was talking to the women he started breathing. I had EMT's come take a look at him and by the time they got there he was ok. Thank god because it took FOREVER for them to get here. I spent the rest of the day not letting him out of my sight. Staring at his belly to make sure he was breathing. Was in panic mode the rest of the day. He fell asleep right afterwards and slept for quite some time. He woke up and drank a bottle around noon and then started rolling his eye's in the back of his head...I thought it was starting again. But he went back to sleep and slept till 2:30 when he awoke this time full of smiles and babbling. And has acted fine ever since. Im doing ok. Still emotional and stressed. I cant help but think "What happens if he is sleeping and does this I wont be there to see him." He's in the same room but I'll be sleeping. Its so scary. He has an appt with his Neurologist that was already set up tomorrow so hopefully they will do something. I called today and it didnt seem like they wanted to help much. The lady I had got fowarded to was more worried on how I got through on that line rather than Noah. I called again later in the afternoon and she said she would call back when she had got info from the doctor.....and now 7:47pm no call back. NOT HAPPY.

But other than that Noah has been doing ok. The beginning of the month he ended up having another ear infection and some viral infection. I had to give him nebulizer treatments for his breathing....I managed to keep him out of the hospital although it was close calls. When we went to the doctors office on Wednesday last week his ear infection was gone and his lungs where clear.

Finished my term. For the tough course last term "Intro to Special Ed" I recieved a B. So I was happy with that. I have this week off and next week starts the following term. Although Im only taking one course because that is all that is being offered that I need.

So...... I have officially become a Minivan- mom! Thursday I bought a 2001 Ford Windstar SEL. I didnt want a minivan at first but Erik actually made sense. He said "Noah might need to be in a wheelchair in the future and it would be easier to get him in and out of a minivan vs. a the backseat of a car. " It made sense. When I went to try vehicles out on Tuesday after work the dealer brought me for a test drive in the Ford Taurus I was looking at then said"have you ever thought about a minivan" after talking about the girls and Noah. I laughed he showed me the van, took me for a test drive, and showed me all the extras. I fell in love. I have a button that I press and the side doors open and make it easier to get Noah in the car and carry all the bags too. I love it.

Well thats it for now. Wanted to catch all of you up. Its been a while sorry.

Snow, Snow and more Snow

Well its been a little while since I last blogged. Not completely my fault this time. Last snow storm we got hit with the wet snow that sticks to everything and we got about as much of it as we got last night. (10-14in). Well Last sunday we lost power at 8pm on Sunday and we didnt get it back till sometime Tuesday afternoon while I was at work. It was nice to come home to power. Straight into the hot shower I went. Noah had spent the night at Grammy and Grampa's Monday night because our house was REALLY cold. We borrowed my parents propane heater for that night and it warmed our room up and the house and was nice to have. But then this morning we woke up to about another 10-14 inches. And Im just tired of the snow. Ready for Spring.
Noah is doing well. Wednesday he had a pediatrician appt and it was the first time in a while that he got a clean score. Everything was great. No ear infection, lungs sound great, and he gained wieght. The doctor was super excited. So was mommy. Noah now weighs 18 pounds 1 oz. He has missed his PT for the last week and half because of the storms and etc. Hope to pick that back up on Thursday. But mommy has been putting him in his Jumperoo quite often and he seems to love it.
As for me.... I am doing ok. Very tired lately. Noah has been getting up quite a few times at night. Doctor thinks its his teeth and we are still having some pooping issues. The last couple of nights have been better than usual and I hope we are on the uphill side of this issue. Mom spoke with someone who has had a child like Noah and recently lost her child. She was pressing the issue of getting a nighttime nurse - someone who would come into the home and take care of Noah during the night while I slept. And Im just not ready for that. I would feel like someone else was taking my place, doing my job I guess. As a mother you know that you wont get a full nights sleep again for a while and you just learn to deal. I just wouldnt feel good about it. As much as I hate getting up every couple of hours with him during the night it also is more time that I get to spend with him and every second with him I cherish.
My hip has been better doesnt bother me as often. Still have days where it kills me but those are few and far between.
Thank God this term is almost over. I cannot believe how hard this term has been. Usually its hard because Noah gets sick and we spend time in the hospital, etc......Noah has been well most of this term....its the papers. My Intro to Special Ed that I was super excited to take.....well thank god I made it. It was a struggle. Lots of hard projects to get finish. But I did it. One more research paper to turn in on Wednesday and I am done besides the final....woohoo....
The other class was a breeze...... Just like next term is going to be. Hopefully. School could only find one class that they are offering that I needed so thats it next term. It sucks to drive to Portland for one class twice a week but its also going to be a nice break. Taking College Composition 2. Which will be fun for me because I love to write.
My birthday is getting closer and closer....and that just means Im getting closer and closer to 30. Somedays already I feel older than that. LOL! 7 days until Im 26 years old....wow..... time flies.... Looking back at the teenage years I never saw myself where I am today. I knew I was going to be a mom someday. Thats what Ive always wanted but not as soon as it happened and not how. But looking back it really has grown me up. And I wouldnt change it. Noah is here for a reason. Not sure what Gods plan is yet but someday we will know.
Well thats it for now.
Love you all
Beth & Noah

Life

Yesterday I had off from work and the girls were on school vacation. So I told Erik to let them stay home with me instead of going to Daycare. So they did. We had fun. I found this neat site while doing one of my homework assignments the other day. Crayola.com lets you print out free coloring pages for kids. So I printed out some coloring pages, then I sent them out to play for an hour. I tried to keep them busy so that they werent stuck in front of the TV all day. They came in and we played the Wii for a bit. It was nice to spend some quality time with the girls. They said they had fun too.

Then........

last night it was nice too. Erik and I took the girls to McDonald's for supper and then dropped the girls off to their grandparents house and I dropped Noah off to his Grammy and Grampa too. Our friend Desiree had given us tickets to go see a comedy show and so we got to have a night out for the two of us. The comedy show was actually quite good and then after the show Erik and I went out to dinner. It was nice to get out just the two of us, although both of us couldnt help missing the kids by dinner time....lol.....
Called mom this morning to see how Noah was and how he did last night....and she said that he was up every 2-3 hrs but that he was doing good. But she said something that made me smile and really feel special. She said that everytime he would wake up last night he would start out playing in his bed and then he would start saying "mom mmmm mom mma mmm mom." He missed me!!!
Erik got up early this morning to go out ice fishing..... so didnt get to see him this morning...before I went to work. But we will have the kids back to night and life will be back to its normal self. Although It was a nice break and nice quality time with him last night that we dont get very often.
But besides not sleeping, Noah is doing great. We have his jumperoo at the house now...and he is doing quite well in it. In fact lately thats the only place he stays happy for longer than 5 minutes. I think its just the different position that he gets to look around and feel like he is standing on his own.....Mr. Independent!!!! LOL!
But life is good.
My hip has actually felt better the last few days. Although last night walking back into the house I slipped on the ice and caught myself with that leg and today its been a little sore..... I hate winter.
School is good. I missed last wednesday because Noah was having issues with constipation and in pain. Monday was a holiday so we didnt have school. And this wednesday I went but I left early because it was snowing and I wanted to get home before the roads got bad. Glad I left when I did because the roads were already slick and I slid into an intersection and ALMOST got into an accident but didnt. My brother wasnt so lucky and ended up getting into an accident on the way home from work that night. A car was coming head on and he swerved to miss it. The car clipped him sending him into a snowbank and hitting a telephone pole. The car that hit him took off. But Eric is fine, his jeep is totaled but he is ok.
Well....thats it for now. Hope everyone is healthy.
Shelly if your reading this..... "Happy Birthday" sorry its late! Luv yah!
Luv
Beth & Noah

Not Sleeping Again

So Noah is doing well except for the fact that the past few days he isnt sleeping. Mommy is getting quite exhausted. He was up ALL NIGHT last night. Dont know what it is or why. He isnt really fussy when he's up he just wants to play and babble to mommy. All I know is mommy doesnt feel like playing or talking much at 1am, 2am, 3am,4am or 5am. :) exspecially when she has to work in the morning. Luckily my work day is only a half day today. :)
My hip is still bothering me. Not as often as it was but it is still there. I went and got the massage and it helped and I was painfree for 3 hrs and then it started hurting again. But I do think it has helped because it doesnt seem to be in as much pain as it was in, and doesnt seem to try to come out of the socket as often.
Noah did something exciting last week. Wednesday when the speech therapist was working with him Noah actually said his name. The speech therapist heard and was excited as well. He has said it on occasion but it was awesome that he said it while one of his therapist could hear him say it.
Working on anothe huge project for the Special Ed class. I missed school last wednesday because Noah was having some constipation issues and was in a lot of pain. I ended up giving him an enema on Friday night and that seemed to take care of it.
It was nice to have someone to spend Valentine's Day with this year. And I yet again was spoiled. The weekend before V-day he bought me two tables to put in the computer room for my scrapbook section. He said that was my present....so I was happy with that. But I got home friday night and he gave me a small box of chocolates. Saturday morning he gave me a beautiful bouquet of flowers with lots of purple in it because thats my favorite color. We went to lunch with the girls and Noah and spent the day together.

Update on Life

Well... Noah seems to be doing ok. Last Friday I took him back to the pediatrician because he was still running a temp and he had his ear infection still. But this med (the one they should have put him on to begin with) is working I think. While at the doctors I had them weigh him and he has gained 8.5 ounces. And now that we have the crib he has been sleeping until 5 am almost every night. Very exciting. I stopped using the meletonin because I think it was giving him gas and making sleeping worse. It would work and knock him out first thing, then he would sleep for 3 hrs and then be up crying for 3 hrs. Without it he is going to sleep and staying asleep for 7 hrs.

Im in a lot of pain the last few days. I dont know what I did but my hip keeps acting like it is going to come out of its socket and then I get shooting pains through my leg down to my toes and up through my lower back. Talking to my mom and Noah's Physical Therapist both think that my Siatic Nerve is irritated. The Physical Therapist doesnt think much will help unless I go to a Chiroprator (which I cannot afford) and she doesnt recommend stretching it or anything until I am seen by a Chiropractor. So in November I was seeing this girl who is going to school for massage therapy and Im going to go see her tonight to see if a massage will help. Work is killing me today all the lifting, turning, bending.... but 4 more hours I can do it.

Ive got my first big project done for my Intro to Special Ed class and although it was ALOT of work it was kinda cool to see how many childrens books with Special Needs in them they're are. I even ended up buying one on Developmental Delay since Noah has that and I thought it might help the girls understand better.
Well thats all for now...we love you all
Beth, Noah and family

Another one!

So ended up calling out of work yesterday again. Woke up and Noah was running a temp of 101.0 and he had been up all night. So I called out and called the doctors. I got a little frustrated because Noah has a good pediatrician now but it seems like we can only get in to see him or the physician assistant when we book ahead of time. So I called and again "We only have a slot in the Nurse Practitioners schedule." Dont get me wrong the nurse practitioner is good but I just feel that with all of Noah's special needs it is important for him to see the DOCTOR." But anyway we took the appt with the nurse practitioner. His ear infection is still there, and he has a common cold. So they put him on a different medicine for his ear and told me to give him DELSYM for his cough.
He seems to be feeling better today although I havent seen him much because I needed to go to work this morning. I hate going to work when he isnt feeling good. I remember being little and sick and all I wanted was mommy. But at least he has Grammy.
Erik and I again discussed me quitting my job again this morning. He really wants me too. He thinks we can afford it. He wants me to do it now. I just dont know. Ive never had that. I have been brought up that you need to have a job and take care of your bills, etc. And he said today " I want you to quit, I want to come home and have you here, I want you to enjoy Noah everyday and not have to leave him. He wants me to get something I can do at home and it doesnt matter if I do it before I quit. He likes to come home and have me there and have dinner as a family. Pick the girls up from school once in a while or at daycare. Right now I told him we would talk about it more and then make a desicion. So there is more talk to come. Its just a huge step and Im not sure Im ready to rely on him for the money situation. Dont get me wrong finding out about Noah makes me want to jump for joy and say absolutely yes I'll quit. I always wanted to be a stay home mom like my mother did for us when we were little. I just never in a million years thought that I would be able to. We will see what the future holds.
Mom, Dad, Erik & Eric :) are moving the rest of my stuff in today while Im at work. Noah gets to sleep in his crib tonight! Im so excited to get home and set everything up. And Im so excited to put him in his crib tonight to sleep instead of the playpen. We have airplane theme again. And Noah has a daddy figure that can make the airplane figurines to hang from the cieling now!!! YAY!

Another Ear Infection!

So its been a LONG three days but yesterday Noah went to the Doctors and has another ear infection. This would explain the crankiness and high temps. He has a cough too and the doctors said that if it doesnt get better by thursday they want to see him again. They listened to his lungs and did another strep test and the test came back negative and his lungs sound good. So we have overcome that obstacle now a new one. His fever seems to have broke this morning and Im hoping and praying that he starts to feel better today. For the past two nights its been miserable. He has given mommy about 2 hrs of sleep each night. I'm exhausted and wondering how much longer I can function without some adaquate sleep. But I guess thats "mommyhood."
Life at home is wonderful. The girls and Erik are so great with him and its nice to have a family. I enjoy making dinners and tucking the girls in at night. We are moving Noah's crib in this weekend and the rest of my things. It will be nice to be finished with packing. I hate packing and moving so Ive been doing little bits here and there, I cant wait to be done.
School is going ok so far. Like I said my second class is going to be tough but its interesting just the same. Just a lot of work. My first class is going to be a breeze. Which will be nice. But I want A's at the end of this term so I plan to work my butt off.
Im thinking about and have talked to Erik about putting an ad in the paper to try to get some kids to watch at home. So I can stay home with Noah and spend more time with him. I enjoy the days that I get to stay home and just be with him. And thats what Im going to school for to take care of children. I would enjoy that so much more than bottles. Not that I dont enjoy CLYNK they are a wonderful company to work for and have been more than understanding of my time off for Noah but I just want to spend as much time with Noah as I can. So thats what is going on right now. Its in the talking stage and Im getting things together and figuring things out first.
We love you all.

Milestone complete!!!

So Noah is still rolling over on the floor. It is so exciting to see him do something new. Its kinda like he heard the Dr say he wasnt going to do anything else new and "Bam, let me prove them wrong mommy!" I was so excited Thursday but at the same time I didnt want to get to excited in case it was just a one time thing. It is not. He has done it many times since. Sometimes its hard to change his diaper because he is rolling onto his tummy. Now if we could just teach him to roll back to his back.....lol.....he gets so mad when he gets on his tummy and cant get back to his back. I had bribed him with Chocolate Pudding to roll over so Thursday night I gave him some. He love it! His eyes got wide and smiles started coming one right after another. He doesnt get a lot of sweets so he was extremely happy and enjoyed every bite.
Starting yesterday he has had a temp of 101.5. Not quite sure from what but he is going to be seen by the Dr later on today. Im wondering if its another ear infection because he isnt sleeping at night either. We will see.
I have school tonight so Mom is going to take him for me. Yes new term new grades...and I want to do well.
Well need to go give my baby my undivided attention.
We love you.

ANSWERS!!!!

I sometimes wonder why I get excited over things? We did get answers while we were down there everyone! Although I have to say that as a mom They are not the answers I wanted to hear. I think that this is going to be one of the hardest blogs that I have written.

For as I prayed and prayed for answers to our questions....I was hoping for answers that would make me feel better....yes it happened at birth....your son is going to be slightly MR (I hate that abbrev.) but he will be ok. He will live a somewhat normal life....blah. blah. blah.

That is not the case.

My dad seemed to write a very good email that I just read that explains things and it would be easier for me just to post at this time. Like he said and I said above....it just hurts to much right now to explain. So here is what we found out.....

We went to Boston so that maybe we could get some
answers. We were successful. However, the answers do not
paint a very good picture. Beth and Cindy have not got to
the point where they can pass on the information to others.
The Doctor did a very thorough review of Noah and his
history including the MRI of his brain. When he completed
this, he apologized for what he was going to have to tell us.
Then he very thoughtfully and carefully explained
everything.
Here is my interpretation of what I remember. When your
brain is developing, it develops in layers. Something
genetically happened at this stage with Noah and as a result
his brain did not successfully accomplish this. Areas of his
brain that were affected were those that control his motor
skills and his recall. The best example I can give of his
recall is that he has a tendency to stick his fingers in his
mouth and then bite them. He does not remember that he
has done this countless times before and that it hurts. That
is why he continues to do this. He has developed to about
the stage of a 3 month old and that is as far as he will go. His life expectancy is anywhere from today up to 10 years. During his life, we will have some hard decisions to make in the future and we need to start preparing for them now. As his condition deteriorates, we will need to decide just how much medical intervention we want to keep him alive based on his quality of life. The seizures and the sicknesses will all take their toll. As he grows, some orthopedic care will be required and this will include some surgeries. The Doctor informed us that there will be many issues coming up in the future and we will need the money we made with the fundraiser and more to cover those expenses. He felt that what the Maine Doctors were doing is working and he suggested we continue to let them care for Noah until the specialties at the Children’s Hospital of Boston(specifically their very good Epileptic care professionals) are needed. He wants us to save the money for future needs. We had already been informed that we would need to pay for
this visit because MaineCare would not and we were prepared to do that with the generosity of so many of you. However, when we proceeded to checkout the lady informed us that MaineCare would not pay because they failed to get a referral from the Doctor and they could not bill us. We think the Doctor must have told them not to charge us after he got done with us. He seemed like a very good Doctor with a very caring heart so we feel that this is a strong possibility. He did say that he would be recommending another MRI to evaluate his current status and there will be some other testing he will be recommending but this will not change his diagnosis. We have a long hard road in front of us with some very tough decisions that will need to be made.
Meanwhile this little guy seems to have touched the hearts of so many of you in the short time he has been with us. He just seems to bring out the best in everyone that sees him. People fall in love with him at first sight. Thank you for all your support and prayers from Beth(Mommy), Cindy(Grammy), Charlie(Grandpa) and of course Noah.

One thing my dad forgot to say is that the siezures are expected to get worse. He could have a mix of different kinds and we will have to control those. He doesnt sleep well at night because he doesnt have the layers to control him to go into the different sleep cycles that we all go through. So he told me to try some meleconin tablets at night up to 3mgs and see if this helps. We started last night with a half of 3mg tablet. We will see if it works.

So that in a nutshell is what we found out. It is extremely hard to hear and think about right now. But I am doing ok. Holding myself together as best as I can and just trying to stay as positive as I can. We have a lot of support out there now and that helps. Please keep him in your prayers.

On to good news!!!!! For two weeks at least Noah has been really struggling to roll over on the floor by himself. He would get very aggravated if he couldnt. Well Today he has done it at least 6 times. Three times for the Physical Therapist..... its exciting. Maybe he finally has got it. It was well needed today....and made my day. Made my moms day and even my dads. And he has been full of smiles. Its like he knows Mommy needs a little more happy faces today to get through. I love him so much.

Well thats enough for today.....

We love you all.

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.