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.