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