Updates on Noah

Checking in....

2012-01-27T13:50:00.002-05:00

So things are still going well. Noah is still healthy and happy. And Mommy is loving it.... This week has been a busy week for Mr. Noah. Monday he got new AFO braces for his feet. He had grown out of his new ones. He now has Spiderman AFO's to match his Spiderman Sneakers that he wears with them... So he got those Monday and the PT & specialist wants him wearing them 30 minutes a day to start out with in hopes that he will one day wear them for most of the day!!!

Wednesday we went to the PCP for a 3 month follow up. IT HAD BEEN 3 MONTHS since he had seen him! So that was exciting. They weighed him and measured his height at this visit and he now weighs 33lbs 11oz!!! He is getting big!! And he is 41 inches tall!!! Wow!!! I can remember when we were struggling to get past 18 lbs and we have now almost doubled it!!! The doctor was impressed at how well he is doing this winter especially since winter is always our toughest time keeping him from all the respiratory illnesses. Lets hope it stays this way!

Im really working on getting some weight off and have been using a very helpful site called myfitnesspal.com which helps me to keep track of my calories and burned calories thru my exercises. Ive worked out in some fashion for the last 2 weeks only missing one or two days. I've found that I really enjoy going to the pool and swimming to workout and didnt realize how many muscles you use to swim until I went and when I woke up the next day "FELT" all the muscles I had used :)
I also switched to some oral meds for my diabetes right now because I was really struggling with the insulin making me hungry while I was trying so hard to loose this wieght. So until that pregnancy test gives me a positive reading Im using oral medications to control my diabetes for the most part. I am continueing my bedtime insulin but thats fine...
I also have found that drinking more water isnt all that bad.... although I have cut my intake on soda down extremely and have been struggling lately with headaches from the caffiene withdrawal. So Im increasing my soda just a bit and drinking it first thing in the morning in hopes this will help. I will still get in my water I promise but these headaches are really a bummer... I figure I will make smaller adjustments in my soda intake and hope that this helps with my headaches... Erik tells me Im detoxing from soda slowly but surely!!
Just like everything else I need to use my motto "one day at a time"
I lost 1.75lbs last tuesday so I hope that number gets bigger and bigger!!

Things continue to go well....

2012-01-18T08:37:00.003-05:00

So far Noah continues to do well with the med change. He is so much more alert and I really think its helping him with his strength as well. Holding him yesterday he pulled himself foward all by himself, caught me off guard! A little coughing this morning but I think his molars are making there way down further leading to more saliva and he is coughing on all that spit. But he has been a happy healthy boy lately. And this momma is loving it.

I started back at TOPS yesterday. Not so disappointed in my wieght gain since August. I did ok. Hopefully my new-found motivation will work for me and I will start shedding these pounds... Started a exercise challenge with the family so hopefully this helps to motivate me as well... Been drinking my water so Im very happy with myself....lets hope it keeps up. I have a picture on my fridge with a saying that reminds me "I have to stop giving myself reasons why I cant and give myself reasons why I can!!!"

Well this is all I have for now. Life is still going great! Lets hope it continues!!

So far so good....

2012-01-14T20:53:00.003-05:00

So Noah is doing with the med changes so far. Little to no more siezure activity and he seems to be more alert. One day this week he even stayed awake the whole school day, only sleeping 20 minutes on the car ride home! Very impressed!
He missed two days of school this week due to the snow & ice! :( but he had fun with mommy at home. We got lots of cuddle time in.

Im really working hard at this drinking water goal that I have set. Did pretty good this week yesterday I even succeeded in getting the full 64 oz in! And a workout!!!

Baby Steps here we come

2012-01-10T12:55:00.002-05:00

So yesterday Noah had a nuerologist appt. Things siezure wise have been going very good lately. So the doctor was very impressed. He was impressed with his head support too. Anyway Boston had suggested that since he has been doing so good with the ketogenic diet and the clobazam that we try to take him slowly off the clonazapam. Which is a similar drug and this had been the goal when we had started the Clobazam but just havent got to the place where we thought it was safe. Now we are beginning these steps. He is going from taking Clonazapam 1 tab in the morning & 1/2 tab in the morning to 1/2 in the evening and 1/2 in the AM for 3 weeks and if all goes well we will then drop it again to just a 1/2 tab in the PM for 3 weeks and then he will stop it completely! Phew its always nerve racking for mommy to wait and hope when playing with the drug regiment but they are in hopes that he will do fine and the clonazapam has more side effects than the Clobazam that we will keep him on. We can only hope that this works. Pray everyone!
Then he had a chirpractor appt yesterday as well and the Chiropractor was very impressed with how well Noah is keeping his neck adjustments. Things are looking great and hopefully soon we will be working on helping his scoliosis. But he wants to see Noah holding his neck adjustments for two weeks before continueing on other areas!

2012 has slowly got me working on a better me as well...Little revelutions are being set... One is I need to begin to drink more water rather than diet soda. Diet soda is an aweful addiction that I have and I drink WAY to much. So Ive been striving to get at least 32- 50 oz of water into my body...with the hopes that I get to the full 64 oz Im suppose to get into me! This will also hopefully help me with my mini wieght loss goal of 25lbs. I really need to work on me a little bit. Im not happy with myself and I know Ive dealt with a lot these past few years and this is probally part of the issue but now that Noah is in school 5 days a week I have no excuse why I cant take a little "mommy time" and work on getting me slimmer and healthier.
So I will keep you updated on my progress as well as Noahs progress.

Family life is going very well...the girls are growing up so fast. Marissa turned 13 on New Years eve and I cant believe I am being the mother to a teenager already! She is doing basketball this year in the 6th grade team and she is doing so well. She loves it.
Megan is doing well as well. She is getting ready to start Hip Hop Dance Class and I know she will enjoy this as well. She just got thru having both ears rupture from an double ear infection and was sick all last week but she is doing better! PHEW!!!

Erik is being kept really busy at work lately. Long hours and long days! Which is good for the business and the job security. It has been a great opportunity for him to become Plant Manager and it gives him opportunities to do some traveling for work which makes it hard sometimes not having him home but he is enjoying it and it gives me some good quality time with the kids. Ive always wanted a family of my own and I now have it and I love it. Hopefully 2012 will be the year we have waited for...Lets keep Noah on this healthy path and my family happy and healthy too!

Happy 2012

2012-01-08T09:54:00.002-05:00

Well....another year has gone past and its time to look to the past year and remember the journey.

Noah really started out having a tough time in 2011... February we came really close to lossing him he was so sick. But he is a fighter and we got thru it. Then when he was well enough he began Preschool. What a step that was for mommy! But The Morrison Center Preschool really has been so good for him. He is getting so much stronger and I luv to see how much he is accomplishing...although to some eyes it may be small...to mommy's eyes he has accomplished much. 2011 Summer seemed to go without a hitch. We did try to do a Spaghetti Dinner supper but it just was to hot a day for Spaghetti and the turnout wasnt great. However we do appreciate all of our family and friends that did come out and support us. September and October we ended up in Maine Medical with phemonia and I thought that we were gonna have a tough time this winter. So far (knock on wood) things havent been that bad. December we finally switched completely to Home Hope and Healing and discharged Maxim Healthcare for services. And we became fully staffed for nursing care. And I have to say I am exciting and thankful that I relly truely believe we finally have an awesome nursing staff in our home. Christmas came and went and this year it was so exciting to be able to buy Noah some toys this year instead of just clothes.

Noah is still on the ketogenic diet and is thriving on it. Before we went on this diet he was siezuring 9-10 times a day and they were the "big" stiffening siezures. Now on the ketogenic diet it seems he is only having siezures 1-3 times a week and most of his siezures are the smaller sleeping siezures versus the stiffening ones. So this diet is worth all the work that we have to put into it. He is also gaining weight and growing on this diet. Last weight was 31 lbs amd 42 inches long. He is getting to be such a big boy.

Now 2012 is here. Another year ahead with more journeys and trials. I would like to believe that I am ready for it. I hope that Noah being so healthy this year continues and 2012 is full of happy surprises. I keep telling him that with this new found strength in his head control mommy wants him holding it up by my birthday. :) That would be such a wonderful gift. January Noah has started going to see Dr. Paul Newton in the Biddeford Chiropractic. We originally went there in hopes he could help with Noahs scoliosis, upon examination he found that Noahs neck was extremely out of place and we are beginning with fixing this issue first and then he will work with the scoliosis. Maybe getting his neck alligned will also help with him holding it up better too.

I thank you all for your support! And I always know I can count on everyones support. This one fact has helped through the past years and will continue to help into 2012.

Wishing for a Happy & Healthy 2012

2011-12-30T13:49:00.004-05:00

Noah is still doing well. He is growing so fast but this winter so far has been healthier and happier. November and December went smoothly. He did get a small head cold in December but seemed to do ok with it. We havent had to go to the pediatrician in 2 months. (knock on wood)

His head control seems to be stronger and we can only hope that 2012 will be the year his head control is developed. We will see. Im just happy for the things he has accomplished in 2011. Going to school 5 times a week in itself has been a huge accomplishment. And I think school is helping him so much. I cannot believe its time to start talking about kindergarden already. phew where does the time go....

Christmas was nice this year. Noah even had TOYS under the tree that he can play with. He got an Elmo guitar that he just touches buttons and it plays...and he also got a Cookie Monster piano... he also got some musical books. We had so much fun with him this christmas. Noah even made his own christmas cookies this year. It was so much fun. He was covered in flour by the time we were done. And he was all smiles. So cute!

Siezures have been doing alright lately. He had one last night that was pretty big lasted 3 minutes and we had to use some adivan but other than that we havent had to use the Adivan for a couple weeks. :) Hopefully this continues for 2012!

Well we hope all of our wonderful Family & Friends have a Happy & healthy 2012! We love you.

Mommy got a new laptop for xmas so hopefully this means that she will be online more often and can update this blog more often!

Christmas is coming!!!

2011-12-07T11:30:00.002-05:00

This year is exciting because Noah is doing so well. (knock on wood) and because of school I have some great gift ideas for him. He doesnt have to get "just clothes." So exciting.

We had a Boston Trip last week for Noah and he is doing so well. They were all impressed. They did some blood work to make sure everything looked ok after being on the ketogenic diet for over a year now and I got the results on Thursday and everything looks ok. They are increasing the diet calories by 100 per day and increasing his pumping rate to 55mls/ an hr instead of 50mls/hr. He has grown a cm in hieght but didnt gain any weight. "Go figure" that has been a struggle since birth. We are keeping him on the diet because I think it is helping and hoping to decrease his Klonopin until he is no longer on this med and then we will work to taper him off the Zonisamide. I would be so excited to be able to get rid of two meds!!!! AS long as siezures dont get worse of course.

School is going well. He is pretty consistant with attendance this year and seems to be improving. He is doing better with head control it is still not there but he is getting so much stronger! :) Little steps is all I ask for! He is in visual therapy now and seems to be doing well with that. So happy! He is enjoying the christmas lights on the tree this year. :) :)

Well that pretty much sums everything up for now. We love you all!

Happy Thanksgiving!

2011-11-18T15:39:00.003-05:00

This is Noahs Handprint & FootPrint turkey that we made at home. We traced his hands and sneakers and then the girls cut and glued it together...so adorable!

Happy Thanksgiving to all our family and friends! We are so thankful for each and everyone of you! And we hope you all have a safe and happy holiday!

Noah is doing well. School is doing such good things for him. He is getting stronger in head control and I really HOPE & PRAY he is holding it up soon. I keep telling him Mommy wants him holding it up by my birthday!! :) But it has been such an amazing experience so far.

We did do some trick or treating this year about 5 houses which is better than our 1 house last year. However we had an iccident with Grampa in which we went for a trip into a ditch and luckily Grampa kept Noah from getting hurt...grampa was a little sore for the rest of the week and neither got hurt to badly but that was enough for mommy to call quits on the whole trick or treating this year!!! We went back to the house and continued to give out candy!

We have all got our flu shots and seem to be doing well this year except for the two spells of pnemonia that Noah has already had. "KNOCK ON WOOD" I really hope this year is better for him we had enough scares last year with him!

Happy Halloween

2011-10-28T11:44:00.002-04:00

Noah has not been healthy enough for halloween for the past 2 years....But Noah is excited this year for Halloween. So far so good. (knock on wood) He is doing pretty good and might actually get to do a little trick or treating...depending on how the weather is....I think that Great Grammy & Grampa should fly us to Florida every year so that Noah can trick or treat in warm weather... :)As you can see he is dressing up as "SUPER MAN" Mommy was not all so excited about the fact that he has grown out of all those "cute" cuddly animal costumes but Daddy really liked this...now its time for the super heros!!! He does make such a cute SUPERMAN I have to admit...

He is off to school today all dressed up. They are doing a little celebration party for Halloween... Sent the nurse with the camera so Im sure I'll have more pictures to post later.

Health wise he is doing good. He has been fussy lately and Im not sure if its more related with bathroom issues we have been dealing with lately or those molars...however either way it has not been fun! Noah holds his breath when he gets upset and there has been lots of episodes of this the past couple days.... Mommy prefers he breaths and doesnt turn all those lovely colors!!! Other than that he is recovering from phemonia quite nicely and has been back to school all week...

Well...we hope everyone out there has a safe and fun Halloween! We love you all!
More pics to come.

Noahs Doing Better

2011-10-25T10:29:00.002-04:00

Noah is back to school this week. He is off O2 and is doing well.... he still has those darn molars coming in so he has been a little cranky and drooling like a faucet. He is still on antibiotics for his phemonia but has been doing well. He got some new toys for home and a new switch too! Very exciting! Its great to have some toys he can play with at home.

We've had some nursing issues but we are taking care of them. I found my nurse sleeping last week and we fired him. Its a much longer and scarier story than that but I dont want to go into details online! Let's just say this momma & daddy was not happy.

However this makes our nursing company back in a recruiting state. We will see how long this takes. But since we have two agencies working to find coverage hopefully it wont be long.

Home Sweet Home

2011-10-19T20:41:00.002-04:00

Noah came home on Monday from MMC. He is doing alright. He is still on O2 but just 1 liter. He isnt running a temp anymore and he is happy most of the day.

Tuesday he got his flu shot when we went to his follow-up appt so hopefully this will help him from getting sick again soon. The Dr was happy with the way he looked and sounded so hopefully we get off this O2 soon.

If everything goes well he should return to school tomorrow!

Back Again :(

2011-10-17T12:07:00.001-04:00

Noah was brought to SMMC yesterday with a fever of 105.7. Bringing him to the dr's I thought it was just going to be an ear infection. He was on a little O2 but didnt sound really congested and was just burning up. At SMMC we got the fever down and they did blood work, urine test, and a chest xray. The xray showed signs of a phemonia again. We were transported to MMC and stayed overnight.
This morning Noah is doing better. His temp is gone and he requires a little O2 periodically. The doctors just took him off O2 for a while now. We are hoping to go home tonight. I am very confident that I can handle the illness this time. He's alert and doesnt sound very congested at all. The doctors at SMMC wanted him to come for observation because we were here 3 weeks before with phemonia and they felt it could be a hospital aquired phemonia but MMC doesnt feel this is the case with the improvement they are seeing so quickly and the fact that he did get better in between cases.
Hopefully we will be home before dinner!

Still Going Strong

2011-09-29T07:49:00.002-04:00

Noah is still doing ok at home. We are done the antibiotics and off the oxegyen for the most part!!! Still needs O2 sometimes while he is sleeping! But not all the time!! Still is running a low grade temp but doctor isnt concerned as long as it doesnt get higher. Says with phemonias sometimes it takes a while for the temp to disappear completely.

Nursing is going ok. I think the new nurse is going to work out great!

Noah is doing well at school the past two days back he has stayed awake for the whole class!!! The first day he had a busy day because they did OT, PT, and speech all in the same day!!! He was a tired boy when he got home!!!

Home Sweet Home

2011-09-24T10:38:00.002-04:00

Noah is home now. He came home on Thursday afternoon. Things have been going ok since being home. He is still running a small low grade temp on and off and still hooked up to 1 liter of O2. But is doing well... He was so happy to be home...As soon as I put him down on the couch to take his jacket off he started smiling and talking it was so good to see.

I have my 60 hrs of overnights for nursing approved finally. So I had a nurse thursday and friday night. Tonight is our night and then from now on I have Sunday - Friday nights covered. This should help out alot.

Noah has a follow up appt with his PCP on Monday and if all goes well will continue back to school on Tuesday!

We are moving around my house...it started yesterday. The living room is getting moved to the "old" dining room area...my kitchen table is being moved into the kitchen and the washer and dryer is eventually getting brought up into the room where the "old" living room was. We started working on this last night. The living room is moved and now its just getting the rest of it moved!!! What a project!!!!

Another Day at BBCH

2011-09-21T10:51:00.006-04:00

Noah is still about the same as yesterday. He is still very sleepy, however has woke up for a few minutes with some expressions on his face & some interaction. Not much but some...
He had a rough night last night with breathing and needing nebulizers to help keep his O2 stats where they need to be. I didnt get a whole lot of sleep last night he kept me, the nurse and the respitory therapist on our toes.

After rounds today the doctors say we are here for another night at least. We are all in agreement that Noah needs to be a little more at baseline before we go home. Meaning he needs to be more awake. The oxegyen requirement doesnt bother me it is the fact that he wants to sleep all day. So hopefully we find out sooner or than later why he is sleeping so much.

7:15pm

So today Noah has seemed to be doing better. He was very constipated so we gave him an enema to help him be more comfortable. I tried to ease up on the tylenol and ibruprophen too to see if this helped him to wake more. He has woken a little more today. He only stays awake for 15-20 intervals at a time but its nice to see eyes and see "some" interactions..... His tempature has been in the 99's today which is still a small temp for Noah since his normal temp stays around 97-98.....but much better than 100's.
The neurologist is suppose to be in sometime tomorrow to see him and talk about what he thinks would be a good plan for Noah. He spoke about reducing the Clonazapam dose again to see if this would help decrease the sleepiness but I want to talk to him before I just agree to this change. He comes off the steriods after today and hopefully he continues to do ok and not have any problems with ketosis! Crossing fingers~~~ so far so good.

In BBCH

2011-09-20T18:57:00.001-04:00

Noah has been moved up to Barbara Bush Childrens Hospital. He is doing better breathing wise and is only requiring 1/2liter of O2 to keep his stats up about 93%. He is very sleepy and we were very worried about this. While still in the PICU they ran a EEG to make sure he wasnt siezing continuously and the EEG came back fine. PHEW!!! So we are staying overnight for at least tonight to make sure he begins to wake up a little more before bringing him home.
He was still running a temp this morning so I think the tylenol and Ibruprophen could be playing into why he is so sleepy. They are leaning toward this being a viral episode versus a asperation or bacterial phemonia now....
He has been put on steriods to help with the infection but we have to also be careful with these because the steriods could mess with his sugar levels and cause him to come out of ketosis for his ketogenic diet. So they tested him blood levels today and said it looked ok and they will test again on thursday to make sure that this hasnt happened. Dr tonight said their objective is to try and only keep him on the steriods for 3 days and then take him off. Keep our fingers crossed that helping him with his respitory illness doesnt mess with his siezure and ketogenic diet.
Well thats it for now. They are keeping a close eye on him and we hope that he begins to be himself soon so that we can be home soon. But good news is we are one step closer because we are finally out of the PICU!

Another Visit To MMC

2011-09-19T11:39:00.002-04:00

So Noah was admitted into the PICU (Pediatric Intensive Care Unit) in Maine Medical Center yesterday with phemonia! The poor little guy is so sick. Its that time of year again unfortunately. He gets so sick so qucikly too!!!
Saturday he was suppose to spend the night with Grammy & Grampa and when Erik & I went to bed something just didnt feel right to me. I went and hunted down my phone that I had forgot to bring upstairs and mom had called me twice. I called them and he had a stuffy nose and sounded all congested. I told them to bring him home.
At home I took temp and checked his O2 stats with his machine and he had no temp and his O2 was at 91%-93%...Sunday morning he was wheezing and I tryed everything to stop it and couldnt---still no temp. Took him to the doctors 2 hrs later and he had a temp of 100.5! And she said his lungs were both full of junk. Take him to MMC I was told.
Got him to MMC and he was seen and put in the Critical Care Rm in the ER. Temp had risen to 102.8 with tylenol!!! YIKES!!! Xrays showed phemonia and THEY GOT AN IV & BLOOD WORK without much hassle..... YAY!!! And we were off to PICU!
He is doing ok. Still working really hard to breathe. Makes me want to breath for him! :( On quite a bit of O2 and we just started him on Gtube antibiotics instead of the IV antibiotics he was on! The doctor says he will be in the PICU again tonight and we will review in the morning.... I really hate it when my boy is so sick but Im hanging in there. One day at a time! One day at a time!

1st Week of School

2011-09-10T08:51:00.003-04:00

Noahs first week of school went well. We had a nurse and transportation and everything went very well. Its an adjustment though...Mommy had major withdrawals without Noah home all week. The house is to darn quiet when all the kids are in school. I kept myself busy cleaning the house, baking with the girls when they got home, and working on diapercakes for the business! About 3 pm everyday I thought "HE HASNT EVEN LEFT SCHOOL YET, HE STILL HAS 45 MINUTES BEFORE HE EVEN LEAVES!!!" LOL!!! I'm sure I'll get used to it but Im not sure how long its gonna take!

Noahs still having his siezure spells. Well unless you hook him to an EEG and then he will just not sieze. We took him for an EEG on Thursday this week and he just slept through the whole EEG. The doctor called yesterday and said the EEG still looked good. URG...how frustrating when you know something isnt right. But we are going to do some playing around with Meds and see if this helps. We can only hope!

Noahs Progress

2011-09-02T09:35:00.003-04:00

Noah has had such an awesome summer. I love having months like these. He has been alert and happy and healthy. We went two whole months without seeing any siezures and he did so well at school this summer.

However all good things must come to an end sometimes. He is having spells again which I am convinced are siezures. I dont know for sure but I called the neurologist and he thinks that I could be right. We are going to schedule him to have a 24 hr EEG again to find out. Lately he sleeps most of his days and is having these twitching spells.... :( I am so disappointed. I hope that tweaking his meds again will help. The doctor is on Vacation this week and the receptionist says he is booking out into Nov/ Dec and Noah just cant wait till then. Gonna call when the DR is back from Vacation.

We took a trip to Waltham MA a couple of weeks ago to meet with the Ear Specialist again. Noah is scheduled for Ear Tube surgery on Sept 30th. We will be going for a pre-op appt on Sept 29th and staying over night for the surgery. Then Noah will be staying overnight at Boston Childrens Hospital for observation! I hope everything goes ok. Keep him in your prayers. While under anestesia in the OR they will be doing a hearing test as well just to re-check to make sure he can hear ok. Im pretty sure he will pass this test!

GOOD NEWS!!!!

Starting Tuesday Sept 6th Noah will be going to preschool 5 days a week at Morrison Developmental Center. He went 3 days last year and we got the opportunity to try 5 days this year. Which is exciting. He has improved so much since beginning school I think it will be really good for him. Yesterday was a bittersweet day because it was his last day with Home Health Visiting Nurses Physical Therapy and Occupational Therapy because he is going to get his services at school and start a new chapter in our lives.
Bittersweet because Lana Our PT has been with us since Noah was 6 months old.
There were tears and laughter remembering the good times....and she is gonna be greatly missed. but this again is going to be a promising opportunity. It means Mommy wont be able to cuddle him as much...and I have to let go a little more, but I know its for the best. I even have nursing and transportation this year set up as long as everything continues to go smoothly. So Ive been really trying hard to get my Diaper Cake business running. I put my ad in the local newspaper and got business cards and Ive been beginning to get calls and orders. Exciting. When Noah starts school I plan on making some diaper cakes up and bringing them to some stores who in the past said I could place a couple on their shelves but I just havent had the time to get some there. Check my webpage out www.mainelydiapercakes.com

Hurricane Irene was quite the storm for us hear in Lake Arrowhead. We lost power for 68 hours or so. It kept things interesting. The candle light flickering seemed to not help Noahs siezures at all. And I dont think he understood why we werent turning lights on so he would sleep. We borrowed a generator from a friend however the first one didnt work. Patti Reed (my friend since kindergarden) let us borrow her generator Tuesday night and it worked great and helped us out a GREAT deal! She was my hero this week.

Well I guess thats it for now. Hopefully now with internet( I lost it for a while) and with Power back, and with my afternoons free-er with Noah in school I will try to be better at keeping this updated.... I really will try Grampa & Grammy! We love you all.

Still Going Smoothly

2011-07-12T16:14:00.002-04:00

So Noah and I enjoyed the break from school for the month of June. After coming home from the hospital in early June Noah has done very well. I really havent seen siezures for at least 4 weeks now and he is very very talkative and smiling more too. Its so wonderful to see, not as appreciative at 2-5am but still happy to see so much happiness coming from him. We havent had to go to the pediatrician office for a few weeks and thats a nice break too.

Preschool started back up last week and he is doing GREAT. He has been awake the whole time for most classes and is very interactive. The teachers have been so excited to see such a new "Noah" and its been exciting for mommy to see as well... I had a nurse for one day to the school with me but family situations have caused her to take a leave of absence...hopefully a new one will be appointed soon....I really hope so. As anxious as I am to leave him without me being by his side it would be so great for me to have a few hours three days a week to have some time for me or to take the girls to the lake or something. But transportation is a whole nother fight as well....

We did set up the pool this year and it has already got quite a bit of use with this warm weather. Ive tried a couple times to get Noah to go in but he yells until I take him out. He obviously wants the pool water to be above 72-76 degrees....:) We will keep trying....

Well its been nice to have the siezure business back under control... I feel like a weight has been lifted off my shoulders. Now looming in the background is the need to get his tube surgery done and over with for his ears.... One thing at a time! One thing at a time. I have trouble changing anything now since we are at such a great place.

We are planning his fundraiser dinner right now. It is scheduled for July 23rd from 4-8pm at the Alfred Parish Church. $8.00 Adults $4.00 children 12 + under. Please join us, money raised will be used to help offset costs of transportation and special needs equipment and remodeling needed to help ensure Noah can enjoy his best quality of life!

Happy & Healthy

2011-06-22T07:36:00.003-04:00

So Noah is doing GREAT these last couple of weeks. We are now off from O2 and he is talking and smiling more and more. I love to see him this way. I think this new siezure drug is working wonderful. (knock on wood) I havent seen very many siezures since starting it....maybe one of his bigger siezures and one or two "smaller siezures." I love it. Life seems so much more relaxing when he isnt siezing all the time.
He is on a month break from school. Starts back up July 6th. Its been nice not to have to drive back and forth to Scarborough these past couple of weeks. But I will continue to do so if the state cant seem to get the transportation lined up. It is very beneficial to him.
Well Today is the girls last day of school. Come on Summer Break. This summer should be so much more fun with the kids. Im not working so I can bring them to the lake and etc.
Well life is good right now and I hope it stays like this for a while!

Noah is Home Again

2011-06-09T11:04:00.003-04:00

Noah came home yesterday after a busy morning at Barbara Buch Childrens Hospital. He got to participate in celebrating Barabara Bush's 86th Birthday Celebration at the hospital yesterday. Barbara Bush came in and read to the children and then visited with all the children. She came over and sat with Noah and myself and let him pet her puppies.
I got loads of pictures for the scrapbook and it was such a special event to paricipate... She touched Noah's leg before she left us and said " I love you Noah." He is seen on Channel 13 and 6. Ive posted Channel 13 below.

WGME 13 Top Stories - Barbara Bush celebrates birthday at Maine Medical Center

After Barbara Bush visited we had a nice visit with the Portland Sea dogs too.

Noah is doing better. He is still having some issues breathing but is home and happy. Mommy is very happy to be home too. I hope that we stay home longer this time...

Now its time to finish getting him better and begin planning for his fundraiser dinner a little over a month to go.. so much to do! July 23rd Alfred Parish Church come join us for dinner to honor Noah!

Still at MMC

2011-06-07T15:59:00.002-04:00

So Noah is still at MMC. He has spells where he is back to looking better and times where he still is miserable... He still is very junky in the lungs and still requires some oxegyen... They did another chest xray this morning and thought that the chest xray looked very similiar if not a little better than the one taken on Friday evening. So that was good news. They think that he probally has some viral infection and it just agrivates his airways, or they think he might have aspirated his ssecretions.
The neurologist while we were here decided to lower the dose of his clonazapam siezure med to try to help to make him more alert and see if this helps him be more aware of secretions. This is basically the reason we are here tonight...they want to make sure this change doesnt have an effect on his siezure control.

They feel that I have the equipment at home to care for him and the knowledge to know when things get to much and he needs to return to the hospital. So they doctor stated that he doesnt have to be "perfect health" to return home like some of the other children have to be. Mommy does a good job at home caring for Noah the doctor stated this morning during rounds....we are very well known on the floor. During the day Noah has nurses who are just passing by and see him back here and they stop to say Hi and find out why he is here... he is a popular boy.

Well keep your fingers crossed for tomorrow. Hopefully after the events we can go home tomorrow. Noah has the opportunity to be included in having Mrs Barbara Bush read a story to all the children tomorrow morning & then afterwards the Portland Sea Dogs are coming for a visit..... Then hopefull we will be in the car headed home...

Back to MMC

2011-06-04T22:27:00.002-04:00

Its amazing how quickly Noah can change from being 100% healthy and happy to VERY VERY Sick.... Monday thru Thursday were the best days I have had with Noah in months... He was happy and smiling and babbling up a storm. Thursday night he went to bed the healthiest little boy Ive seen in months, and Friday morning woke up Congested and very fussy. Took him to the Dr's around 2:15 and he was diagnosed with left ear infection and right lung pneumonia. Sent home on antibiotics and xophenex Neb.... Got home around 4pm with daddy and he retched and his fevers skyrocketed. By 7pm he was at 103.8 and his heart rate was over 200. I had put him on O2 by this point and had him up to 5 liters and his O2 stats were then only registering 78%-87%. A call to 911 was needed. Took him to MMC were he was rushed to critical care and was put in the PICU. Pneumonia xray didn't look horrible but thought he may have aspirated his saliva. Did a spinal tap to look for Meningitis but that came back normal...Came very close to putting a breathing tube in but didnt have to it was a very stressful evening.

Tonight things are looking up a little...he has spells of wakefulness where he is his playful self. They did an EEG today and it still looked great. Which was good to hear.....We are still in the Pediatric ICU tonight but are in hopes they might move him upstairs tomorrow. We will wait and see. He is still having high amounts of congestion and wheezing spells. Poor little man!
They did a course of an antibiotic through 2 shots into the leg last night! :( because they had no luck with an IV. and tonight this will be repeated again tonight....I sure hope he feels better soon. I feel so helpless sometimes...

So much improved!

2011-06-02T08:40:00.002-04:00

So it began last week with Noah being put on O2 Sunday night by the nurse. I took him to the doctors tuesday because I couldnt get him off the O2 and there was really no respitory reason for his need for O2.So I took Noah to MMC ER Wednesday morning because I felt that things needed to be looked at... he was sleeping most of his days and I had actually gone to bed in tears Tuesday night because I just didnt know what to think or do anymore with his siezures.... So wednesday I called the doctors office to get him in for an Emergency EEG...they could not get him into the office until Tuesday and I was not waiting for Tuesday so we took him to the ER. They did an EEG in the ER and Noah was having continuous siezures again.... Admitted they hooked him up to a 24 hr EEG and monitored him when given meds to stop the cycle... Things didnt improve with a snap of the fingers... I again was threatened that if the siezures didnt stop the next step was ICU and intubation. Let me just tell you I really hate this threat it really eats away at you until he is in the clear...I had alot of butterflies in my tummy and did alot of praying to keep him from this step... We started a new drug treatment called Clobazam on Friday. We can only get this drug from Canada and insurance doesnt cover it but I am willing to try it. It beats the other option of giving him a drug "that could mess with bone marrow and could be fatal...it hasnt happened yet in children but in some adult cases....Im all set...Things were not looking good until Saturday late afternoon. Up until Saturday afternoon he was still sleeping alot and siezuring off and on... He had the doctors and nurses all scratching there heads because he would be at 100% when on just a 1/4 liter of O2 but when he came off the O2 his stats would plummet into the low 80's high 70's..... Then Saturday came and daddy took him off O2... he was alert and talking and voila! he never went back on O2.... By sunday I hadnt seen a siezure in 2 days and he was talking and smiling and I have not seen him this good since December....
Its crazy how fast he can come down with something but even crazier that he can turn around for the better so quickly too. I had the neurologist on call in the room Saturday morning because he was sleeping all morning long and then he woke up and was 100% better and we had done no changes... he just amazes me....

Now he is so SO SO SO much better...It makes me so happy to see him this way. Its been so tough these past few months..I was unsure if we were ever gonna get him back to this state ever again... I was worried we were not and here we are now and I am so happy. I feel like a wieght has been lifted off my shoulders. He went to preschool yesterday and the teachers were all so excited he stayed awake and was vocal throughout all of school except 10 minutes or so... That is a HUGE improvement. I hope it stays this way for a while.

We have got an okay from Alfred Parish Church to do another Fundraiser Dinner for Noah. We have scheduled it for July 23rd 2011. Still have lots of planning to do on my part but I know I have family and friends support and help to make it successful like last time. And God knows we need it expecially now that we will be using it to pay for this new "miracle" med!!!!

I will try to keep you posted....life is super busy right now... with Noahs preschool schedule in which I still need to bring him because Nursing cannot seem to be set up and transportation is another fight....uhh...it really is frustrating...and Marissa is playing Softball again this year. She does really great with it too but the schedule for that is crazy as well....I have such a wonderful family and I can truthfully say that my life is full of adventures everyday!!! I love it!

Epilepsy Walk 2011

2011-05-03T16:36:00.002-04:00

We will be participating in the Saco Maine 4th Annual Epilepsy Walk this year! We again have a Team Noah!!! This is a very important cause to our family. Noah struggles with siezures on a daily basis. Its a scary and stressful condition for those who suffer and the loved ones that care for those that struggle. There are a lot of days that I feel helpless for my son when we are struggling with siezures and this is one reason why this cause means so much to me-- it makes me feel like I can be helpful to my son and all of those struggling with siezures.... hopefully with the help of these walks and the funds raised they will find a cure to help with this condition!
Please help by sponsoring me and my family. Click on the link below and it will bring you to my page.... and if anyone would like to register to walk with us and be a part of our team we would love to have you.

Sunshine through the Clouds!

2011-04-27T08:35:00.002-04:00

Well...Noah seems to be on the road to health again! We went yesterday for a follow-up since the phemonia and the doctor was happy with his progress... His lungs are clear again and he has no ear infection. Has some back molars coming in, this the reason why he is chewing on his poor fingers so much! But healthy and happy.

We also had a neurology appt yesterday and the doctor wants to try Noah on Keppra one last time. We were on this med a little while ago but at a much higher dose and I took him off from it because he was sleeping all the time. This time its at a much smaller dose and we are going to see if this helps with the siezures that we are still facing on a daily basis. He also increased his Adivan dosage for his emergency meds. And we went over the plan in place for siezures lasting longer that 3 minutes and the difference in meds and siezures we use which med for. Much more comfortable now and understand what Im doing now. Phew!

Noah went back to Preschool Monday with the nurse and my mom. The report I recieved when he returned home to me was very promising. He still had some sleepy times but the teachers were impressed with how well he did. He even did some babbling to the teachers that they werent getting before. I think that the diet ratio change has helped. He seems more happy and more alert! We have a nurse taking him to school now. She is working for one more week and then the nursing company says that they have another more permanent nurse all lined up. Now its a fight getting the transportation but we are working on this also. Right now my mom or myself has to transport the nurse and Noah to preschool and then we are still stuck in scarborough for 3 hrs but at least we can go off and do things now if we want too!

Well...I think this is it for now! He is doing much better! We did get word that we are going to be able to use the Alfred Parish Churchs facility again for another fundraiser for Noah. Which is exciting. Now we are in the process of picking out a few dates and soon we will be in the BIG planning process!

We all had a very nice Easter! Noah had a small easter egg hunt while the girls did there easter Egg hunt. Mom and dad came home from Florida in time to spend Easter Dinner with us. And my brother spent the day with us. It was very nice!

Noahs birthday party is this weekend and we are praying for nice weather and a good turnout like last year!

Smiles and Rasberries

2011-04-20T08:03:00.004-04:00

Well..... I can officially tell you that Noah came off the O2 this morning. Keeping his stats above 90's and blowing rasberries and smiling like his usual personality. He seems to be feeling much better and its so good to see.
Saturday I had a voice mail from Boston's Children Hospital and Noah's lab results FINALLY found its way to them and they were okay with me lowering the ratio to his diet. With mixed emotions I found the old recipe and made his formula for the day.Mixed emotions because with the process of tapering down the ratio this could mean one of two things. Either 1.)Noah like we are hoping just needs a lower ratio and his siezure control will get better--- occasionally happens on the diet but is extremely rare.....which kinda makes it more apt to be true in Noah's case :) or 2.) the diet isnt going to help and we are back at the drawing board on how to control Noah's siezures....which leaves playing around to find the right drug remedy or possible surgery....either option a real stressful situation. Well..... we changed the diet Saturday and I can already see a difference. I cannot tell you if in fact it has to do with the diet ratio change 100% or if he just is feeling better. I really feel that its a combination of both. He is doing much better siezure wise...Yesterday I only remember seeing maybe 3 at the most....and he was having SO SO many a day. I hope this diet is our answer, I havent given up yet! He has so much more personality these past few days and I really think it has a lot to do with the diet change. Even before the change when he started feeling better I didnt see this much personality. I havent seen this "Noah" in a long time it seems like. Maybe our prayers are being answered.
It was so cute yesterday I had him chillin in his crib downstairs while I did some work on the computer. He has a Rock n Roll Elmo in his crib that I frequently turn on for him when he is in there. I turned it on for him a couple of times before sitting down at the computer. I had put Elmo next to Noah in the crib before I left! While sitting at the computer Elmo went on!!! NOAH HAD TURNED HIM ON ALL BY HIMSELF!!!! He did it three times, it was very exciting....I tried to video tape him accomplishing this but he would not preform for the camera...I was excited all the same!!!

Lots of things to start planning for that are coming up..... We have Noah's 4th birthday Party coming right up. I cannot believe my little boy is going to be 4!!! Already!!! Time flies by way to fast. We are doing an Elmo themed birthday and Im striving to make alot of his decorations for the party. Ive been really working on them the past couple of days.

The Epilepsy Walk is coming up. Im beginning to ask for donations for that. It is May 16th this year and for the 4th year in a row we are going to have a "Team Noah." This is a VERY important walk and event for us. Noah and the Family deals with Epilepsy on a daily basis. Its a very hard disease to go through and very stressful. Our participation helps to show others they are not alone and with the money raised it helps to get more researched accomplished to figure out new treatments, etc.

Im also in the very beginning stages of planning another benefit dinner for Noah. We are getting low on our funding with all the trips back and forth to boston, etc. We are in the process of needing to get some equipment for Noah that his insurance will not help us get. He needs another Special Car Seat so that he can go to and from to Preschool safely. Our car seat is so heavy and the safety restrains would make it very hard to take in and out of the van on a daily basis for school. Insurance covered the first one and will not cover another. We are also looking into getting Noah some supportive seating for in the house. Right now he uses his old carseat for a seat while in the house. And while it seems to work great for him, it doesnt give his back and hips the support needed. We have a adaptive stroller that works great for him that the insurance covered. However our house is much to smaill for the stroller to fit through the tight hallways, etc. So this is another area we need the finances for. Right now Im in the process of finding out if we can do the supper in the same location as last time...and as soon as I get the green light there I will begin reaching out to a team of family and friends to help with other details!!!

But good news being brought to everyone today. Noah is feeling better again!!!! He is off O2 while he is awake...still needing some O2 while asleep... He is more himself..... smiling and happy....and less siezures!!!
Hopefully we are traveling on a foward "happy" path for a while now!!!!

Two Steps Foward....three steps back!

2011-04-12T19:03:00.003-04:00

GRAMPA HERE IS YOUR BLOG!!!!! LOL!!!!!

So not good news to start out with. Noah was brought by ambulance to MMC again this last Sunday. He had temps of 103.8 with tylenol and heart rates over 200. Chest xray revealed phemonia again. This time it was present throughout the lungs. Doctors feel that Noah probally developed a head cold and couldnt control the congestion and it developed into a phemonia. He was admitted over night for observation and given an antibiotic shot. We came home last night. He is doing somewhat better. His temp has gone down to between 99.4-99.8. He is on 3 liters of oxegyen and likes to play the game "if I pull this out how low will my stats drop on mommy" with me. Im not overly impressed. LOL! He is getting nebulizer treatments every 4-6 hrs round the clock.

His siezures are all over the place but its to be expected. Although before getting sick they really were not all that great anyway. We still have to find the happy medium between diet ratio and meds. I should be getting a call tomorrow from Boston. Talked over with the nurse about tappering him down on the diet ratio tonight and she is checking with the doctor tomorrow morning. His diet is causing him to metabolize his depekote to quickly and this med seems to be the med that helps us the most. When he was at a lower ratio on the diet he seemed to have better siezure control.

We are also in the process of getting a drug from Canada called Clobazam. Its a long process because it comes from Canada and I feel I would like to play around with the diet a little more before going more on the drug route but we are in the process to at least get it into our possesion if the diet plan doesnt seem helpful.

Right now its lots of undivided observation, lots of suctioning secretions, lots of placing the oxegyen back into Noah's nose- because he hates it there, and lots of cuddling and loving & of course stressing!

But at least he is home and for the most part comfortable!

I will try harder to keep everyone updated more often! Ok Grampa Im sure everyone is happy that you keep me on my toes about blogging! Luv you all! Thanks for supporting us! He is loved by many and expecially by his big family...I luv this photo of grammy and grampa giving him "luvs" in the hospital in Feb 2011!

Baby steps....

2011-03-30T08:40:00.003-04:00

Noah is so strong and brave! Im happy to announce that Noah is no longer requiring oxegyen. We are still struggling with siezures on a daily basis, but once we took him off from the keppra he slowly turned around. Our Boston visit went ok. They ran some blood work and found that his ketone level in his blood was the lowest it has ever been. This probally contributing to the siezures. They went up on the ratio to his diet in hopes that this would help. I have not seen any real improvements since the change but we go for blood work next week and maybe these results will clarify some more questions. We are working on getting him some medication called clobazam but it comes from canada so it is a little longer of a process. Noah did start school 2 weeks ago and seems to enjoy it. It is so wonderful to see him so happy when we drop him off and so happy when we pick him up. They say he participates for a while and then sleeps for 10-15 minutes and then participates and than sleeps. But we hope that the times that he wakes will increase more and more as he goes. It takes a lot out of him he usually sleeps for like 2 hrs once we get home! He is getting so big! He is almost fitting into 4T pants without the adjustable waist now! ITs so amazing. He actually hit his 25% for wieght. This was so exciting because I dont think that he has ever hit the double digits for his weight percentile! Im enjoying staying home and taking care of him. Its less stressful on me to not have to worry about telling work I need a day off because of appts or because he is having an off kind of day. Its so nice to be able to cuddle him when he isnt feeling good and be here for him when he is having a bad siezure day. I do miss the kids and co workers at the day care however I feel I made the best choice! I've began getting his birthday party planned for this year. I cant believe my little boy is gonna be 4. Where has the time gone? I cant believe he is almost 4 already!!! It makes me smile at all the progress he has made. And think about how greatful I am for these last 4 years. I wouldnt change them for the world. Yes, I wish my little boy was healthier but it is what it is and with the chronic illness of epilepsy and the brain malformation it has taught me a little bit about myself. I would give anything to have him a healthy little boy but I cant change him and I love him for who he is. He makes me smile everyday and he gives me all the love I could ever ask for. He is so special to me and so many other people in this world. We are doing an ELMO themed birthday this year. Im hoping that the bright red ELMO is something he will be able to see. Ive began being crafty this year and have made his invites and some decorations for the party. I hope we have as good as a turn out as last year! Every birthday is a day to celebrate but I always feel that Noah's birthday's in particular is a day of celebration because we dont know how many we will actually get. So another year older is always well worth celebrating! The family is doing well. I am struggling trying to concieve but we are working on finding out why. It will happen when it will happen. We will keep trying until it does. Only God knows when that time will be. But Erik and I continue to grow in our relationship every day and I really feel blessed to have such a wonderful family. I love them so much!

Still traveling ona Bumpy Path!

2011-03-13T15:21:00.003-04:00

So Noah is home and has been home for about a month. He is still fighting this phemonia but seems to be slowly making progress. We are still struggling with siezures. His Depekote levels will not seem to increase. His body is metebolizing the levels to quickly. The doctors are unsure why but seem to think that it might have something to do with the ketogenic diet. Tomorrow we go to Boston to check on the progress of the diet and see where we go from here. I really think that before Noah got sick the diet was doing great things but since he has been sick his siezures have taken a turn for the worse. His neurologist here has tryed to increase the Depakote to the highest dose he feels comfortable with no success. Last week the neurologist added a siezure medication that seemed to make him to drugged up. All he did was sleep and when he was awake his eyes were all glassed over and he just layed there. Friday I called into the doctor and requested him to take him off from this new mediacation. This weekend he has had increased small siezures but he seems to be coming back to himself again. We are getting some "Noah personality" now. He still is sleeping quite a bit but we are enjoying that he is babbling smiling for short spurts.
On our visit tomorrow I am hoping that they increase Noah to the 4:1 ratio. This is the last step on his diet ratio. I hope that this will be the answer we are waiting for. Portland just wants to increase meds and I dont want that for my son. I was asked a question this week that was hard to answer but Noahs pediatrician said that in Noah's case it might be a question of having a child who has some siezures or having a child on so many meds that he sleeps alot of the time. I told her that I would rather put up with some siezures than not have Noah laughing and smiling and babbling. I just hope that there is something out there that will help him so that I dont have to make this decision. Part of me wishes that tomorrow Boston sees Noah and see's how he is and wants to admit him to help me figure out what to do next. Portland I feel is to proud to admit they dont know what to do and without them sending us or possibly Boston admitting him I dont think my insurance will pay.
I just want my baby boy back. I said to Erik yesterday: I wish we could rewind time back to January when my boy was healthy and smiling! I just pray that we get him back.

School has been postponed for Noah. The pediatrician pulled him the week we came home from the hospital. He was suppose to be able to return this coming week. But I have a gut feeling it will at least be one more week out. He seemed to really enjoy preschool so I hope that we will get back there. We just need him stable before we bring him out.

I gave my notice at work and my last day was March 4th. Noah needs his mommy home. This winter has been a very rough winter. I was bringing home to many colds and etc from working at DeerPond. So although I miss working with the other child and co workers at DeerPond Edu care it is what I have to do to keep Noah at his best quality of life at this time. Im working on trying to put more attention to my Mainely Diaper Cakes Company. Trying to get more advertising out there and trying to find places that I can display some cakes and sell to the public. Please email me if anyone has any suggestions.

We still need many prayers from everyone. It scares me that it has been over a month and Noah is still fighting very hard to pull through. It has been a very emotional month and continues to be. I wish and hope everyday that he will be better! We love you all. Please keep those prayers coming....

Slow but Steady

2011-02-17T17:43:00.004-05:00

So Noah is doing ok. On a phemonia standpoint the doctors are very pleased with his progress. On a siezure standpoint he is still fighting very hard to get better. These siezures are tough for him and hard on his little body but he is doing ok.Wednesday we saw slow progress and was still worried that things were going to go south. He was having less siezures but was still not waking up and being himself much. We saw the "noah personality" maybe once or twice all day.

Yesterday Noah was awake a little more throughout the day. When awake he would babble a little and a few times even smile. I sat him up in bed and he was even trying to hold his head up even with all the wires and etc on his head. Im hoping that this means good news for the days ahead. But we will have to wait and see. The doctor came in yesterday and said that he was happy Noah was making progress. It was slow progress but it was progress. He (like all of us) wants to see that continue but if it doesnt there are a couple options. There is a couple siezure drugs he would like to consider choosing between & trying to help but the side effects I do not like. One drug he has been on before and the side effects deal with the eyes and blindness and the other drug has a rare chance of messing with the bone marrow and although it has never happened in children can become fatal, rarely this has happened....but there is always the chance........ I really hope he continues to improve and that I dont need to make this decision. The other option is still in place if he does not continue to improve they are still talking about putting him in ICU with a breathing tube to give him stronger meds to stop these siezures. I hope this doesnt happen either.
Throughout the night last night Noah seemed to improve siezure wise. I only saw one siezure at 10:30pm and then no more. He was more himself too because he wanted to stay up till midnight!!! :)
This morning he is beginning to run a temp again and is more congested. I hope that he is not getting sick with a cold again or phemonia coming back.... this battle is one thing right after another.

We will see what today brings.... he is still hooked up to the EEG monitors... but he might get off the monitors tomorrow.... because the doctor has seen the siezures on the monitor and they are easy to diagnose with the human eye now. I hope so I havent really been able to hold my little man with all the wires on his head. So Ill be happy to be able to hold him when he gets off the machine!

Well we will keep you all posted. Keep prayers coming!

Rough time

2011-02-15T22:11:00.002-05:00

Tuesday I got a call at work from mom saying that Noah had blood in his diaper from urinating. We rushed him to the pediatrician who sent us for some tests. We had a ultrasound done on his bladder and kidneys and also an xray. They also took a urine culture. The results came back as normal for all except that there was infact blood in the urine. We were scheduled to see a specialist.
Noah decided he had another idea. It came on quickly this time and is a rough one. Thursday night Noah began running a small temp and wheezing a little bit before bed. We gave him a xophenex nebulizer treatment and tylenol and went to bed. He was up every hr having some issues. His temp was getting higher and higher and his heart rate began racing over 200. At 7 am Friday morning I took his temp and it was 103.2 and his heart rate was 210. We got a ambulance ride to MMC.

They found that Noah had a very SEVERE phemonia. The worst that they have ever seen Noah have. They also did some lab work and found that Noah had a bacterial blood infection. He was strarted on IV antibiotics. They also did a ultrasound and found crystals in his urine. The beginnings of kidney stones. He is at risk for these with the ketogenic diet and one of his anti siezure meds. They have been flushing out his urine with IV fluids and started him on a med to help prevent this today. For the past 3 days while in the hospital Noah has not been himself at all. Sleeping all day only stirring for brief seconds and then sleeping some more. I kept questioning this but the doctors felt that it was due to him being so sick. Today I brought it up again because he really never awoke yesterday at all, and this worried me. The doctor ordered an EEG right away. The results came late this afternoon and it showed that Noah was having a continuous siezure-- never coming out of it. This making him sleep and hard for anyone to notice. He was given IV adivan (two doses)to hopefully stop them and the team of doctors were surrounding him immediately ready to take the next steps if need be. He was hooked up to a 24 hrs video EEG. The doctors waiting to hear if the siezures were being controled of if Noah needed to be brought to the ICU where they would put in a breathing tube and give him stronger meds to get these siezures under control. The DR said that typically these siezures types will not cause damage to the brain, that it is more the convolsive ones that do. Im worried because we dont know how long he has been having them it could have been the whole three days hes been sleepy.
Luckly, He began to slowly begin showing short bursts of himself. The doctor came back and said there was improvement and then they decided to give him some IV Depakote because his Depakote level was low. And then it was a waiting game still. Just a few minutes a go a resident came in and told me she had just got off from the phone with the DR and he had said there is no siezure activity at this time. Hopefully it stays this way when the meds begin to wear off. Tonight is touch and go and will be a long waiting game. Please keep him in your prayers. I love him so much. I am so scared. Hopefully he will come out of these siezures, get healthier and be home before we know it. Hopefully these siezures have not caused any brain damage and he is the same smiling handsome boy he was. We can only hope and pray and wait.....

1st Day of Preschool

2011-02-07T18:05:00.005-05:00

Today was Noah's first day of Preschool at the Morrison Center. He really only had a half day today because we had to finalize his IEP before he went to class but he seemed to enjoy it. When he first got to the classroom he thought it was nap time. But he woke up in time for "cooking time" and seemed to enjoy the different sights, smells and noises. He was full of smiles as the hand mixer was being brought around the room for each "friend" to take a turn with. There was a switch "button" attatched to mixer and if Noah pressed the switch it would activate the mixer. He did it a couple of times and was full of smiles.

He also participated in helping the teacher pour the flour mixture into the bowl. He was blowing rasberries and talking the whole time. Even said what sounded like "yum."

This is going to be such a rewarding opportunity for him I can already see this. They are really going to do wonderful things. He returns on Wednesday. He is going to be doing 3 days a week/ 3 hrs with nursing supervision in case of siezures. My LITTLE man is growing up.

Friday he is going to Boston Childrens Hospital for his ear tube surgery. WE are going down thursday morning for Pre- op appt. then we will stay the night for surgery in the morning. Because any surgery is considered high risk because of his siezures Noah is being admitted overnight just for observations. Hopefully if everything goes right he will be home Saturday afternoon.

We tweeked the formula a little. Putting him on a 3:1 ratio and increased his Depacote med to 1/2 pill more in the afternoon and siezure control is great! So excited for him. This is going to be our saving grace. Siezures have a lot to do with how well we progress hopefully this ketogenic diet is the answer to our prayers.

We love you all. Keep praying for us! Keep looking back to our page for progress!

2011 New Adventures to Come

2011-01-18T21:12:00.003-05:00

Happy New Year to everyone. I know that 2011 is going to bring lots of joy and happiness to my family. AS we begin this year I look back on all that I have overcome and know that throughout the next year there will be new adventures for me to go through but I am ready.

Noahs ketogenic diet is going quite well and I am so HAPPY that we went this route on our journey. He is so much more alert and is full of so many smiles!!!
He is gaining weight and along with that is strength. It is so wonderful to see the progress he is making everyday. A few months ago when we picked him up to bring him to the car (or somewhere, anywhere) he would just flop onto our shoulder and lay there. Now it is so hard to carry him to the car because he is very often trying to pull his head up off your shoulder. It is so WONDERFUL. Another wonderful thing that is happening lately is how well he is sitting. Still with help and support but with a whole heck of alot less support than even a few months ago. I can usually hold him with one hand and he holds his head up and sits there. Somedays I cannot do this but the days that I can I really cherish it. He gets tired quickly sometimes but I would give ANYTHING to get his sitting on his own by the end of 2011. The other day I was holding him on the couch and he was doing a GREAT job~ well I slowly eased up on the support I was providing for him until I was giving no support at all. He sat there for 3-4 sec before realizing I wasnt holding him and then threw himself back. But I was so Excited for those 3-4 sec.
The last few weeks we have struggled with siezures again. Some where he stopped breathing and I was getting disappointed but even in my disappointment I told Erik many times that I wasnt giving up on this diet because even if it wasnt providing him with complete siezure control it was giving us so many other benefits with his strength and alertness I didnt want to give up. After some more changes with the formula and meds he is ALMOST siezure free again! (knocking on wood~ he still is having a few but very small ones)
On January 4th we went to Boston and met with an ENT there to talk over the subject of ear tubes with him. We went for a hearing test but were unable to get the test with Noahs conditions. They need to do the test in the OR. So it was decided that FEb 11th Noah is going to have tubes put in down in Boston and the doctor has ordered a hearing test while in the OR and also we will stay overnight to make sure there are no complications. So another adventure here we come. Im nervous about surgery although they say its a very easy and non invasive surgery however with Noahs siezures its always nerve racking to have him under anesthesia but we will be in Boston and I know everything will be ok. While at Boston for the hearing test I did hear something that made me smile. We have been told that Noah will never develop past a 3 month old development. But again we shall prove them wrong. While in one of the test we where telling the women that he says "mom" and sometimes "dada" and "nana" and the women says constanances such as "momma" are more a 6-9 month old development. So maybe there is more hope to hold on to.
School will hopefully be starting soon for Noah CDS will recieve the signed placement form for him this week, and the Morrison Center has a spot open for him. This brings many emotions to play but I am excited for him to get this opportunity. My little man is growing up.
I was looking at pictures tonight of just last year. And its amazing how fast time really does fly. How fast children grow up right before your eyes and you just dont see it (***TEAR***)ITs just like you blink and they are not a baby anymore they have grown into a toddler right before your eyes. I cherish everyday I have with him and although I feel overwhelmed and upset that he hasnt made milestones I have hoped for I never give up. We have proved doctors wrong so many times already I know there are more things to come.

I cross my fingers and hold on to the HOPE that is in my heart everyday that 2011 is the year that will bring so much to Noah and myself. Thanks to all that support and love us. I couldnt be as strong as I am without your support! We love you...

Hoping for a Great 2011

2010-12-27T11:19:00.002-05:00

So I hope everyone has had a wonderful christmas this year. We had a great holiday this year. Noah is still progressing with this new diet and things seem to be moving foward. We went for his follow-up appt last week and they were happy with his progress. We are still having a small amount of siezures but not many compared to what we were having. He has had ear infections and a head cold so this has brought out some siezure activities. But all in all they were happy. I did get a phone call on Friday from the nurse stating that they found some calcium in his urine culture and want us to increase his potassium medication to help with this. He has gained weight weighing in at 29lbs 9 oz. (Daddy wants him at 30lb by the new year, LOL). And is 38 inches tall.

It was a stressful holiday season this year for my family and myself. December 7th we lost a great man in our family. My grandfather passed away. It was a hard loss for me to go through but we all no that he is watching over Noah and family now. He will be greatly missed.

Im hoping that 2011 brings much more improvement for Noah. I really am super excited to see him progress already and hope that his improvements will lead to progress with sitting and head control. I can only hope. While I hope I will enjoy all the smiles and babbling that he is doing and be proud of everything he is accomplishing. I will also be thankful for all my friends and family who show their continued support. We love you all!

A New Post!!!!!

2010-11-28T11:14:00.003-05:00

So where do I start so much has been happening....some GREAT news and some not so good. We will start with the GREAT news....

GREAT NEWS~~~~~

Since going on the ketogenic diet in Boston Noah has been doing AWESOME! We went from having 3-8 siezures daily, and now since the beginning of this diet Noah has only had 10-12 siezures...that is 10-12 siezures in about 3 weeks!!!! So exciting. When we went to his 2 week follow-up the doctors were so excited. Not only has it helped with his siezure control but he is gaining wieght and has hit his growth curve (3%) again and is thriving. He is now 29 lbs 3 oz as of Tuesday.

He does have ear infections in BOTH ears right now that he is being treated for. But he is so much more alert and vocal on this diet too. The physical therapist have noticed a difference in his strength and alertness and everyone is super excited and hoping that this means improvement is soon to be seen. I can only hope!

We finally have our IEP for preschool scheduled after I yet again put my foot down and called and told CDS how I felt about their services. Once I called they decided it was time to get an appt scheduled. We are meeting on Dec. 2nd at the Morrison Developmental Center and getting this IEP done. This means my little boy will be attending preschool soon. So many mixed emotions. Im so excited for the opportunity that this is going to provide for him but anxious and nervous letting him out into a world that has so many germs and etc. Im emotional that I must let go a little bit and that he is growing up so fast... (as tears blur my vision). But it will bring him joy and so much opportunity to grow.

This week is a busy week. December 1st we go and get his feet braces for him to wear to help with the involuntary spasms of his legs and feet due to not using them. He will wear them most of the days to help keep his feet and ankles at a 90 degree position.

BAD NEWS~~~
This last week into this week is a tough week for our family. My grandfather is in the hospital in CCU. He had emergency surgery last week and they removed his colan and he is "gravely ill" as doctors have said. Right now he is sedated and on a respirator in hopes that he will gain strength but things are not looking great. MANY MANY prayers are needed. It breaks my heart to see him this way. Grampa lived with us the first year of Noahs life and we became extremely close. Noah is infact Grampa's Little buddy. I just beg people to pray!

The first Few Days on Diet

2010-11-04T14:27:00.003-04:00

We got to Boston Childrens Hospital on tuesday.... by the time we got his blood work done downstairs he was admitted to 9 Northwest at around 2:30 that afternoon. He was started on the new formula *KetoCal* half strength at around 5:30pm. All was going well. Wednesday morning he was smiling and sleepy but was told this was to be expected. This was ok. We took him for a walk around the floor and he was smiling and having a good time. Then things took a turn for the worse. He started retching, after retching, after retching...by the third time the doctors came in and said this was sometimes a normal reaction of the diet. The transition to this diet was not always pleasant but he was ok. They had them put an IV in his foot (which Boston isnt to impressed with his viens either) gave him some IV fluids and after an hr or so started him back on the diet with IV fluids hooked up until about 730pm. They had been worried he was getting to acidosis but blood work did not show this to be true. Hooked up to his feeding pump he did well all night. Stat's stayed up in the high 90's and no retching. Blood work done this morning was also great and things were going smoothly again. He was sleepy but holding his fluids and happy until.... 12:30pm. He then started retching violently once and then again 15 minutes later. His oxegyen started dropping again. Gave him a break from feeding and gave him some blow-by oxegyen.
We have hooked him up again to his feed and crossing our fingers will progress....

The doctors are all okay and confident with how things are going. We get reassured that this is a normal occurance and although hard to watch and put him through will result with some benefits in the near future. We are changing Noahs whole metabolism and this is tough and he may just feel "icky" for a few days.... It will be so worth it if it helps to give him better siezure control in the future..

A New Adventure! A New Journey!

2010-10-27T21:17:00.002-04:00

WEll.... things have been slowly working for us. Noah has been given the opportunity to go to Boston and try the Ketogenic Diet. WE are crossing our fingers and holding our breaths. This is a HUGE change for us. Not only does it change his diet (formula) but we have to be VERY careful on which products we use on him. From body lotions and shampoo too chap sticks and toothpaste. It is a HUGE change but it will be so worth it if we can at least slow the siezures down.
Siezure activity has been high lately. Not only because he has been sick but even before this. Most of them have been the smaller siezures but just this morning he had a siezure and decided to stop breathing on the nurse.... hoping no more of those show up. We leave for Boston on November 2nd and are at Children's Hospital until November 6th. I really pray that this works for him. IT would be so great to see the siezures slow or stop and to see what he can accomplish without them.

This last weekend Noah was hospitalized at MMC. Another cold that he couldnt handle. He couldnt breathe through all the congestion. His oxegyen stats were dropping. We brought him to the ER on Friday morning. Immediately he was rushed to critical and we were admitted until Sunday afternoon. We came home still on oxegyen with him still not keeping his stats up without the extra help. Last night the nurse was able to take him off oxegyen around 11pm and he has been at 96% oxegyen all day. YAY! He is smiling and seems to be feeling better too. It was making me nervous that we might have to reschedule Boston but Im feeling better now!

I got a call yesterday that a spot has opened early at Morrison Developmental Center for Noah. We were told there was a year wait and Noah was on the top of the list. A opening has became available sooner. So my little boy will be going to preschool soon. We are beginning the process and hopefully by the end of November he can start. This brings a mix of emotions to me but I know it is an awesome opportunity for him. And I look foward to seeing what it brings to him.

I will keep everyone updated on the future progression of the new diet and school. These next few months will bring many changes. I hope and pray that it will bring good news to come and a healthy upcoming 2011.

P.S.

2010-09-30T14:11:00.002-04:00

One more thing......

We have decided to put Noah into that Preschool program it was a SUPER hard decision. But we took a tour (Erik, Myself, Noah, Grammy, Grampa, and Noahs PT Lana) it was a great experience and it would be such a great opportunity for Noah. We spoke to Noahs pediatrician about it and she was on board and thought it was a great opportunity as well. Their are risks to him going out into a environment like that but sometimes we just have to weigh the pros and cons. And we feel that this opportunity is to good to pass on for Noah. So we were hoping for this fall but the class is booked. But next Sept Noah will be a Student at Morrison Developmental Center hopefully. My little boy is growing so fast....
Ive been working again on his scrapbook (although Im three years behind) and I just remember and wonder where the time has gone....

Waiting, Waiting, Waiting some more

2010-09-30T13:55:00.003-04:00

So 8/23/10 we did go to Boston and they did blood work ( poked him once with the needle with success...woohoo) and they said as long as the blood work came back ok Noah would be a great canidate for this Ketogenic Diet... After we heard the results we would come to Boston Childrens Hospital for four days and be admitted and start the diet. So we have been waiting for the results. While waiting I have been keeping track of Noahs siezures---- Noah has had 96 small siezures in the past 28 days! 96!! I have called Boston twice to find out the progress of this diet situation and always get told the same thing " they will call when they get the results!" Frustrating! I just want to begin this diet so that hopefully it will reduce the amount of siezures my baby boy is having. In the past few months since the increase in siezures I have watched Noah decline physically. He doesnt hold his head as well anymore, etc. Its so discouraging. But I really hope he gets accepted for this diet and Ive read such good things about it. I really hope this is the answer we have been waiting for.
AS for Noah's health besides the siezures we have had a struggling start to fall and weather. WE have been hospitalized once for a viral cold that Noah was having trouble fighting. It took him two weeks and he was just starting to sound better and look more like himself and now well, Mommy has broncitis and now Noah is running temps and getting congested again. He went to the doctor today and she expressed that because he is already been so sick and winter isnt even here yet we might be in for a rough winter.... I hope we can prove that wrong.

On a happy note I finished my degree in July and recieved my Associates Degree in Early Childhood Education. I recieved a job opportunity with DeerPond Educare at the end of August and took it. Ive been working PT as a Jr. Preschool Teacher in the facilty and love it. Its such a great atmosphere to work in and working with children everyday is great too. Im very happy with my career choice.

My love life is still going strong. Erik is so good to me. And I just love having a family to come home too every day. The girls mean so much to me and Erik does too. IT has really made my life happier being with them. They are all so good to Noah and its so nice for Noah to have a daddy figure in his life. For a while I never thought he would have that and I cherish Erik in his life everyday. Just as I cherish Erik in my life everyday too. Erik and I have been struggling with life financially lately-- but in this economy isnt everyone. But my point is sometimes that can ruin a relationship and although it has brought about our fights I think in the long run it is and will make our relationship stronger.

Keep praying everyone. Pray that Noah is a good canidate for this diet and pray that the diet at least slows the siezures if not erases them from him life all together. Wouldnt that just be wonderful.... thats what I dream about.....and hopefully one day it will come true!

The Start of a New Adventure

2010-08-25T10:58:00.003-04:00

Well Monday we went to Boston Children's Hospital for an appt to talk about the Ketogenic Diet that might help Noah's siezures. They are very thorough there. We first met with the Nurse who did the routine wieght & height and a urine sample.. Then we met with the doctor who went over the diet and its pros & cons. Then we met with the nutritionist to talk about the diet itself and what foods he will be allowed and formula etc. Then the social worker came in and made sure everything finacially and support wise was ok. Then we had to go to the lab for blood work & to drop off his urine from earlier. This is where I hold my breath.... The get his blood first try. But the urine from earlier is no good so they need a new one. We wait for 3 1/2 hrs for him to go. It didnt happen and they say it will get done when he comes back!
But they are going to do up his blood work and check his metebolic levels and make sure that his body can handle the diet. If everything comes back and they give him the green light we go back to Children's hospital in the end of Sept to be admitted for four days to begin this diet. The diet sounds great and sounds like it is worth trying. Hopefully it will stop his siezures all together but sometime it just slows them down. I'll take anything at this point. He is siezuring everyday. Yesterday he had 8-10 seizures that I/or the nurse witnessed.

The decision about preschool has been made and are in the works. I have decided with the help of family that we are going to try the preschool thing with Noah. It is going to be a great opportunity cognitively and physically. The big set back to making this decision was the health fact that he could catch something that his body wouldnt be able to fight off but the pro's to this situation are to good to pass up. We have decided that he could catch these viruses just goin to the doctors or out in public and if he goes to preschool and keeps catching illnesses we will pull him out but we have to give him the opportunity. There is a waiting list that we have been put on but as soon as that is over my little boy will be going to school.

We have also set up to get his ears looked at for a second opinion. We are begining the struggle of ear infections again and I want someone to reevaluate for Tubes. We are in there every month it seems with an ear infection and down to one antibiotic that seems to work.

I was offered a Part Time position last week at the Daycare that I did my externship with. I will be the afternoon head teacher of the 3 year old room. I am super excited about this, and will start on this friday. Its a 2-6 position so I will still have my mornings with Noah. I hope that in the future it can become more that PT. But its a great opportunity, and I really enjoyed it there when I was externing.

I also got great news from the diabetes dr last week that my A1C is still at a 6.8 and she is super happy with this. This is wonderful news.

Update on Life

2010-08-11T11:05:00.002-04:00

So as usually things can change quickly in the life of Noah. We are struggling again with siezures. He is having them quite frequent. They are the little ones... the tremors and staring spells but he is doing it very frequently throughout the day. Two weeks ago I requested an EEG on him and the doctor says the frequency has increased greatly since January and he is requesting that we be seen at Boston's Children's Hospital for a possible trial of Ketegenic Diet. Which is a high fat low carb diet for children with siezures that helps the body fight the siezures. So August 23rd we go for our first appt in Boston. This is a 3 hr evaluation and consult. A month later we will go into Boston Childrens Hospital to be put on this diet. We will stay for 4 days admitted into the hospital. Then when released we need to go back two weeks later for follow up, one month later after that follow up, and then every three months after that. Lets hope this works. If it works there might be a possibility that we can take him off from some of his meds. That will be a relief.

Brought him to the doctors yesterday with a temp, retching, and etc. We found a right ear infection again!!! It seems like every month we go through this. I have decided to get a second opinion on Tubes and this appt is being set up.

There has been a huge decision brewing on the Noah front.... We have been researching putting Noah in a specialized preschool. ITs called the Morrison Developmental Center in Scarborough Maine. This is a low functioning preschool setting. We took a tour of the facility last friday. The center has a few kids in it that reminded me of Noah. And when talking to the Head Teacher there about Noah and his special needs I said " He has siezures that makes him stop breathing..." She spoke up and said " your gonna have to try harder to scare me" and one huge wieght was lifted off my shoulders about this situation. There is a nurse in the room most days and if I can get approved I can have a special nurse transport to school with Noah and stay during the day with him too. ITs a HUGE decision that I am struggling with. It is an ABSOLUTE amazing option for him. Learning wise I think it would be fabulous. He would get therapy there everyday most of the 3 hrs he is there... the only struggle is bringing him into the public and making it possible for him to catch some sort of virus that he will not be able to fight off. Can I take that chance? I dont know that answer yet. I need to really think that through because I dont want to regret it later if something were to happen to him. But he seemed to really like it there when we were touring it. He was smiling and very alert to all the new sounds around him. And that tells me I should just do it. ITs just hard to let go. But knowing that he will be enjoying himself and learning really helps to know.

I finished my schooling. I officially hold an Associates Degree in Early Childhood Eduacation. I have a job interview on August 25th for a Assistant Toddler Teacher in Portland that Im crossing my fingers for. We will see. Very exciting.

Better Late then NEVER!!!

2010-07-13T10:46:00.002-04:00

So It has been reminded to me by my dear grandfather that I do love so much..... that I have not posted in quite some time....

So hear I go:

Noah is doing great! We had his 3 month follow up appt yesterday and things are progressing. He weighs in at 27 lbs and is 37 inches tall. He was quite verbal, blowing rasberries, and moving all around on the bed at the office and the doc loved it. He is getting so big now. I was looking at him the other day and was like "he doesnt even look like a baby anymore". It is sad but in another sense it is so wonderful to see him gaining wieght and growing now.

We did get that airway clearance vest for him last month and ever since the doctor's say his lungs have never sounded better. On top of the vest we now also have oxegyen in the home in case he stops breathing and deep suctioning for his secretions. Things have been looking up. The oxegyen is so great to have. I have a sense of comfort knowing that I have it. Just two weeks ago we were able to go to a friends cottage that I havent been comfortable going to in three years because I was afraid he would stop breathing and it is harder to get to by vehicle. The oxegyen in my car made me feel comfortable knowing that I could use this until someone got to us or we could get him somewhere.

Two weeks ago after a little bit of fighting for it we recieved his car seat. Now Noah can sit foward facing in the car. This special car seat gives him enough head support to be able to do this. He now can see where he is going, instead of where he has been. It gives him more room for his legs and he absolutely loves it. The first day we put him in it he wouldnt stop blowing those rasberries and babbling in the backseat. Mommy likes it to because now I can see him during our rides to the doctors, etc.

Siezures are still a work in progress. He really hasnt been having any "big one's" lately. Its been more the small tremors and staring, etc. The doctor put him on yet another med for his siezures last month. I cant tell if its helping or not. I think it is in the sense that he isnt having the big ones but he still is having the smaller ones. I dont think this heat is helping though. We have an air conditioner is his room that we borrowed from Megan. I try to keep him cool as much as possible.

We have brought him swimming this year quite a bit already. Just this last weekend we brought him to a lake and he absolutely loved it. He kicked and splashed and smiled. It was so cute to see.

Im working on finishing my internship this month. July 23rd is my last day. ITs been a lot of work but I am excited to get that degree in my hands. I graduated in June and walked across stage...not I just need to finish so I can get the degree. ITs been alot of fun interning. I've learned some great things. And the kids are great too. I cant wait to be in charge of a classroom some day.

Still struggling with my sugars on a daily basis. Been really focusing on this since the miscarriage. We are planning to start trying in Sept. Im excited. the goal is to get my A1C down to 6.5 and last A1C measured last month was 6.8. So we are almost there.

Well I think that pretty much sums the last few months up.....

Yes, Grampa I will work harder to keep this updated.!! :)

Love to everyone.

Happy Birthday Noah

2010-05-11T21:23:00.003-04:00

8:51 pm Noah is 3 years old! Wow time flies by so quickly. Three years ago tonight I became a mother! I gave birth to a handsome man in my life. Although we have had MANY challenges in those three years it has been the best three years of my life. He has made me the mother I am today. My world would not be as special as it is today. He has brought tears of joy and sadness, laughter and pain. But most of all he is the sunshine of my days. He makes me smile everyday. He brings me love. He makes everyday worth living.
Three years old today. WOW!!!

Lets all pray for a happy healthy year to come!!! And thank god for the past year! It hasnt been all that bad. Some struggles but not horrible.

Today Noah went for a chest xray. We had a follow up appt with the pediatrician. Chest xray came back negative. Phew. Still sounds horriible. Will do some nebulizer treatments and some vapor baths and hopefully we will keep him from getting phemonia. But the close call today made mommy hesitant to sneak in a little ice cream cake*** we will see how he sounds tomorrow. One bite will not hurt him. ITs celebration time after all.

Doctors are working on getting him a vest that will vibrate and help him to bring up some of his congestion. They are having trouble locating a vest but are still looking.
Ears look great again. YAY!!!
Woke up this morning with a siezure but nothing major. Thank god. And the pediatrician said that she saw a new tooth coming thru on the upper left hand side. YAY! Another tooth.

More.........Bad News

2010-05-04T07:40:00.002-04:00

Last Friday we went in for my ultrasound.... the baby had grown and you could see something this time....however bad news was to come. Our excitement came to a quick hault when the tech said she was very sorry but the baby didnt have a heartbeat. Or little angel was no longer living. It was a tough night. It has been a tough weekend. But we plan to try again in the near future.
So even after this sad news I put my tears and sadness away for one day and we still had Noah's 3rd birthday party. What a beautiful day we had this year...and what a wonderful turnout we had as well. I couldnt have asked for a better party. It was nice to have a day full of smiles and fun. Great to see family and friends that we dont get to see often...and Noah even snuck in just a 'lil bit of ice cream cake..
I honestly cannot believe he is turning three this year. Time goes by so quickly. Looking at him yesterday he doesnt even have his baby face anymore... my baby is growing up so quickly. Well now that we have got so much bad news this last month about Noah maybe his 2010-2011 year will be a healthier and happier year this time. I say that every birthday but just maybe this will be the year.

Month of April

2010-04-29T19:23:00.002-04:00

The month of April did not go over so well. We had two weeks of hell. The first week we were told that Noah is "legally blind." Although I expected it, it was still very hard to hear. Then a week after that we took him for his swallow study in Lewiston. They tried both solid foods (mashed potato, and apple sauce) and then they tried liquid. He failed all three. He aspirates everything and can no longer be fed by mouth at this point. The speech therapist in the test said that the therapist at home could work with him but at this point Noah shouldnt be fed by mouth. This was very upsetting news to me. I knew he was gonna fail the liquids and was okay with this, however I really really wanted him to pass the solid foods. So we are pumping on a daily basis. Sometimes if the girls are eatting a lolli pop I will have them rub it on his tongue so he can get the flavor or if Im having a freeze pop I'll do the same thing but he cannot have anything he actually has to swallow. However his 3rd birthday is coming up (wow the time goes by so fast) and we are having a party for him this weekend. He loves ice cream. Grampa got him started on that at an early age. So Aunt Linda's making an ice cream cake and Noah is still gonna have a little bit of ice cream on his birthday.
Yes, he is turning three I cannot believe it. I really cant. He is growing so fast. Getting so big. I wish we have had more first's since last year but we dont. He has improved so much though. We are gaining and thats all that matters.
After all the bad news in April, the end of April brought a surprise to the family. It seems that we are adding a new addition. I am pregnant. I am about 7 weeks pregnant. After the shock wore off we are all very excited. Honestly I am nervous too. But thinking positively. We are going to have a happy healthy baby. And everyone keeps asking me what I want this time a boy or a girl. My answer is 100% honest and to the point. I dont care as long as its healthy. Many friends and family pass encouragement saying they have a good feeling. One friend says "God wouldnt do this to me twice, he knows you couldnt handle it." I hope they are all right and I pray every night. Please pray with me. Im super happy. Erik is very supportive and I know this baby will be a blessing. It already is. We are due on December 13th. Right before chirstmas what a wonderful gift.

More not so great news!

2010-04-07T09:05:00.002-04:00

Yesterday was Noahs eye exam. I was hoping for good news however it wasnt the case. The doctor did a bunch of tests on him using different toys and lights and colors. One test tested wether Noah had a connection with his brain and eyes. There was no movement therefore no connection. The doctor did this test several times not wanting the results to be given to me. Noah is legally blind. He has some periferial vision but no central vision at all. "Legally Blind" is such a little word but such a blow to your heart when you hear it about your child. This doesnt change any of my feelings toward him. I love him just as much as I did Sunday night before we found out and we will work through this. Just as we have done so through the rest of the not so good news we have recieved in the past. Im not going to lie and say it is easy because it is not by a long shot. I spent a lot of yesterday very upset. But we will do everything we can for him.

Rough winter!!!

2010-03-31T12:09:00.003-04:00

This winter as you can read in the subject of this blog has been a rough one. Noah has been sick with something one after another. Mostly we have had three phemonia's in the last 3 months, a viral cold close to another phemonia, and a few retching episodes. Its been very stressful for me and I cannot wait for spring in hopes Spring brings better health. Just last week we went through the viral cold that was very close to phemonia in my opinion. We had many nights of steamed bathrooms for 15 minute episodes, vaporizers, lots of suctioning of his saliva, pounding on back, etc. His stats were very low at night dropping into the med-high 80% oxegyen level and sometimes dropping as low as the high 70's. Very scary. He does however seem to be doing better this week. (knock on wood) He still seems congested at times and has a horrid cough at times but his stats have been in the high 80's to low 90's so Ive been happy.
We started night time nursing last week. Last tuesday to be exact. And I have to say that it has helped so much. The first night I was a reck and didnt sleep very well...worrying and having nightmares about leaving him with someone new. But after that night and seeing how well she does with Noah has relived my worries and Im getting the sleep Ive needed for a long time. The nurse we have is great she is very attentive, and when he wakes up with her at night she gets some PT excersises in and reads to him and cuddles him of course. She seems to be a good fit for the family.
I did go see the specialist for my foot and luckily no surgery as of now. However he was lovely enough to put a Cortisone shot into the bottom of my foot. MAN THAT HURT! but it is doing better now. I have plantar Fasitis meaning tendons in my arch are severely strained and tearing. PT excersises and the coritsone shot and it should get better. Hopefully. IT does feel somewhat better however since the shot Ive been struggling with charlie horses at night in the bad foot. Nothing seems to help. So hopefully that goes away the more I do my PT.
Noah has been set up for another swallow study. I am really Really nervous and stressed about it. They think that his aspirating has got worse and this is the cause of the increase in phemonia. I cried in the office when it was suggested we redo this test. This is the fight Ive been having since he was 6 months old. I want him to be healthy and I do want to find out but I just dont want to take food by mouth away from him. I agreed to do this test on one condition and that the test be done by a different hospital other than MMC in hopes for an unbias opinion. I have really worked and fought hard on Noah drinking bottles and eatting by mouth and it scares me to get this taken away. His appt is April 14th at Central Maine Med in Lewiston, ME. Erik and I will be bringing him and Im really praying that it is okay news. I have decided that as much as I would hate it Im ok with them telling me he cannot drink from a bottle (as tears stream down my face) as long as they say its still ok to eat icecream ( he loves it thanks to his grandfather LOL) and solid foods. Just this one thing is all I pray for everynight.
We also have an appt scheduled to an Orthepedist to look at his curvature of his spine. This is scheduled for April 26th. I hope this is not bad news as well.
Noah is now set up with Case Management services now and the lady we met with seemed to be great in that she was going to help us to get some great things. It feels good to have someone on my side who can help me now.
So March seemed to bring adventures through the sickness realm....Im hoping and praying for April to bring good news, answers, and health.

Another Hospital Visit

2010-03-11T16:34:00.001-05:00

So this month has not started out so good either. Sunday Noah started to sound really "junky" and was running a temp. I tried to handle this without going to the hospital or doctors office--crossing my fingers it was just a cold. Sunday night his stats were really low...so Monday morning I took him to Goodall Express in Waterboro. They listened to him and took his oxegyen stats as well... registering at an 86 % the doctors decided that Noah needed oxegyen and should be brought to Maine Medical Center by ambulance to get the care he needed. He has phemonia. So we spent the night in the Barbara Bush Hosiptal.
He is home now and we are doing everything we can to get him feeling better. He is doing better but we are still struggling a little. Last night his stats dropped to 81 at bedtime. We brought him downstairs and steammed up the bathroom and brought him in there for 15 minutes. I set up his Vicks WAterless Vaporizer in his crib and we got his stats to stay at 89-90 all night. Mommy was a nervous reck all night but it worked.
I went to SMCC yesterday to get my foot looked at finally. It has been hurting me for at least 9 months but I have been to stubborn to go get it looked at. It has finally got to the point it hurts so much to put any wieght on it and it just aches all the time. So I went. Xrays confirmed that I infact have a pretty big heel spur on my foot. I go to a specialist on Monday and Im a little nervous that they are going to say its surgery time. But maybe besides my fear of needles this might be the best choice anyway so that I can get it healed as quick as I can so I can be back to my 100% self for Noah. We will see how it goes Monday.
So Today I registered for the Epilepsy Walk again. I really hope to raise more this year than last year, and Im hoping that all my family and friends from last years walk does it this year too. Here is the link to my page:Please go on and help me raise money to a cause that means so much to me and my family. And anyone interested in walking let me know you can join my team!

Where do I start....

2010-03-04T14:51:00.002-05:00

Well its been a while since I last updated my blog. But this is by far not the longest I've gone!! LOL!
Well this blog will bring many updates on many different things some good others bad. Here we go. Noah is doing okay. January and Febuary were both hard months for us. January being the worst. We got through the EEG and the allergic reaction and the phemonias finally. Lets hope March brings back the less bumpy path. He has had some tempatures lately reaching 103.2-103.3 but bringing him to the doctors office on Monday the doctors felt it was just a viral bug going around. He seemed to do better Tuesday but Wednesday had the temp again. No signs WEdnesday or today so lets hope that it is done.
On Febuary 20th we brought him in for his scoliosis xrays. The results showed that he does in fact have a 20 degree curvature to the spine but his pelvis is fine so far. We are going to be seeing a orthropedist as soon as we are referred to one. The pediatrician and Noahs therapist feel that this visit will result in the specialist just wanting to keep close eye on him for right now.
The struggle to get Night time nurses is still an on-going struggle. I finally gave up on the first company and researched a company close by. They were going to hire my own mother to come into the home and they were going to pay her to watch Noah. We were very excited about this. I was approved to recieve 48 hours and was going to have four nights and some day time hours covered. However the agency had a weight restriction of 20 lbs! And will not let mom lift him. So now Im back to square one and have started back with the first agency. They are coming into the home on Wednesday next week to do their evaluation and hopefully in two weeks I will have help. Frustrating.
He was doing pretty good sleeping well at night but lately its been another story. We do have some good night but we still have quite a bit of not so good nights. It would just be nice to have some help.
Because of this we have decided to change my scrapbook room into Noah's new bedroom downstairs. I went out and got a dresser and Noah's auntie Holly helped me to find a really great deal on a brand new crib. So we have a room for him now that is his very own...well besides the computer being in it!!! But its nice to have his own space where I can put his equipment and supplies! Very exciting!
More Good news!!! I went to sign up for classes for this term and was told some very exciting news. Because Andover is switching to Kaplan University some of my classes from YCCC that didnt transfer to my major when they were Andover now do transfer. This term I am taking two online classes and next term starting in May I have to do my externship and then in June I graduate! I get my degree, my associates degree in Early Childhood. Not sure what I am going to do with it yet. I've got some options we will see what I decide as it gets closer. But I am so excited!!!
My wieght loss has slowly came to a hault but its my own fault. Over the past few weeks I just had so much going on and Noah's really been sleeping like crap and I just havent had the energy to workout. I keep saying Im going to return to it but I just havent found the stamina yet. Really am going to work on this in the next few weeks. I can do it. I want to do it. I need to do it.
This week Erik is on vacation so we are going to start painting the house. We have paint for the kitchen and dining room. And the girls room. So starting next week my house is going to be madeover!

On our way!

2010-02-03T18:29:00.003-05:00

Well this last week has been a little stressful. Noah has been seeming to get worse and worse (phemonia), I was very anxious about his appt. yesterday. Knowing that the news was not going to be great. Indeed I was right. The doctor did not like how he sounded at all and had us go downstairs for another chest xray, and changed his meds. Gave him the new med last night and he slept from 630pm straight through to 715am. I couldnt believe it. He sounded so much better this morning. The doctor called this afternoon that she couldnt believe it but the xray didnt show any signs of infection. She wants us to finish the meds but she thinks he probally has a cold or something. Which would kinda makes sense since mommy does!
I went to the doctors on Monday because I have been congested and my ear killed me all weekend. Most of the weekend it felt as if I had water in my ear! No ear infection just fluid but I do have a sinus infection. Been pretty miserable the last week. Feel better but still not 100%.
However, more amazing news is that Noah's new siezure med to replace the phenobarbitral due to the allergic reaction. The clonopin seems to be working (knock on wood) he has been sleeping great at night. I think the past few weeks Ive got more sleep than I have got since he was born...well after the first two weeks of sleeping all day and night(when I thought I was gonna have it easy---ha!ha!) We have had maybe one or two nights that were tough but he's been going down about 930-10pm and sleeps till 4-5am, wants to be held-or put in mommy's bed and sleeps til 7-8am! (knocking EXTREMELY hard on wood-lol). But it has been a wonderful change, and I hope it continues! It seems to be doing ok with siezure control as well. There have been a couple of days that he has had head/body tremors but nothing substantial! And I honestly havent seen any at all for the past few days! YAY GOOD NEWS FOR ONCE!
He has seemed to be more alert as well. Maybe its my wishful thinking but he seems to see more. Sometimes I catch him watching TV now.......football exspecially----- Erik enjoys this!!!!
Things on the relationship aspect have been really good lately. We have had a few rough patches the last couple of months but I am really blessed to have found such a wonderful guy. Its nice to have someone hold me and comfort me on the stressful days. This last month has been really tough on me emotionally with all the hospital visits and one thing after another and Erik has really stepped in and been my rock! Im so thankful and sometimes I dont show it as much as I should. THANKS BABY~
The girls are doing well. I really enjoy stepping up and being there mom. Some days can be challenging but Im always up for a challenge!!!
Well the next step with Noah is to get his spinal xrays and hip xrays done. The chest xray did show that his spine has a curve to it- this makes me really nervous and I hold my breathe just typing this. So I want to get this done as soon as possible! Ive had the slips for this for a couple months but one thing after another and Ive put it on hold. Now is the time to get it done.
My weight loss is coming along s.l.o.w.l.y. but for sure. This week I wieghed in with a .75 pound loss. Not a lot but with being sick and stressed I will take it as a loss. And continue on this journey.

Too many bumps but we will get there!

2010-01-27T16:30:00.002-05:00

Well Noah has had a few more bumps in the road this week. Since Saturday Noah has been running a slight fever around 100-101. Brought him to the Pediatrician office and they could find nothing wrong on Monday. Well last night when we got home from TOPS he was burning up so I took his temp---- 103.8!! Yikes. His heart rate was over 180 so I took him to MMC. They took a urine sample and an xray and found that he had phemonia and an ear infection and we were able to go home. They came close to keeping him over night but the doctor trusted I could treat this at home....thank god Im tired of seeing the hospital walls by now! Got home at 4am.
Today he is still running a temp. Just not as high. He slept most of the morning and afternoon and woke around 2:30pm. Im hoping that are sleep schedule is not messed up and that we are still gonna sleep tonight!

For the past two weeks Ive begun to really watch what I eat and begin to really put effort into my wieghtloss! I got the Biggest Losser Wii game for Christmas. I started a challenge two weeks ago. I've been working out at least every other day since. Although my scale had me looking foward to a huge loss yesterday I wieghed in at TOPS with a 2 lb loss last night--- happy about that but not so happy with my scale lieing to me!!! :) With my exhaustion from last night and being sore from stepping it up a little more in yesterdays workout I took a break today on my workout but tomorrow I will be right back to it.

Well I will keep you updated on Noahs progress and mine as well. Hopefully we find that smoother road soon. Im tired and emotional and could really use some luck right now!

An Allergic Reaction

2010-01-23T12:14:00.002-05:00

So Thursday afternoon we ended up taking Noah to MMC Emergency Room. His rash was making his face swell to the point he had trouble opening his eyes. Walking into the ER the registration desk immediately interupted the nurse to come look at Noah, and with a room full of patients we were the second called out back to the ER. Doctors at first were not convinced that this was in fact an allergic reaction, and we saw many doctors in the ER. Finally they were convinced and began steroid treatment and benedryl through the Gtube after failure to find a vien for an IV. After a couple of hours Noah's rash had begun to transform for the better. After confessing my concern, they had the admitting doctors come take a look. They felt my concern about the siezures but also had concerns of their own. They wanted to keep him over night and run some blood work to make sure that this wasnt an super severe allergic reaction that would concern Noahs bladder, kidneys, etc. So they admitted him, did a finger poke to get blood, urine bag, and ran tests. Thankfully there was no reason for concern and all test came back fine. His rash had improved more overnight, and we were comfortable heading home. Or as comfortable as I would be. We have started a new med. Fingers crossed...breath held....I hope this works and there are no reactions..... although Im used to all these bumps in the road...I really preferred the smooth road that we had been traveling on before for a while. Lets hope this road meets up with that one very shortly!

Things not so good.....

2010-01-21T14:06:00.002-05:00

So Noah has come down with a HUGE rash all over his body. His face is completely covered and swollen! For the past two days I have been at the pediatricians office. The doctors are not sure if he has just a viral rash or if he is having an allergic reaction to the phenobarbital. Im thinking that it is the later. I have a call into the doctor's and the neurological doctors office. I have heard back from the ped and she is trying to get ahold of the neuro doctor as well. She is thinking we are gonna ween him off from the med. and put him on something else. AS scary as that is... he is completely 100% miserable. And I hate seeing him this way. It breaks my heart. He was up all night and screamed for 1 1/2 straight. Nothing helps.

Lets hope I hear from the doctors soon. Gonna go lay down for a bit while I have him resting.....

Happy and Healthy

2010-01-12T09:10:00.003-05:00

So far so good. Noah seems to be taking well to his new meds for the most part. We went to his pediatrician yesterday for a follow up. With a big surprise at the scale. Noah now weighs in at 25 lbs 6 oz! Its incredible. So proud! The doctor told us that Dr. Morrison wrote in his report that he did see some good changes in Noah's EEG with the switch to phenobarbital. YAY!! Progress! I asked him if the phenobarbital could make him cranky because he has started this *new* high-pitched scream. He siad that this could have to do with the new med but it should hopefully wear off. Lets hope so! Im so happy that he has seemed to do well on this med. Not to sleepy in the morning and afternoons I've actually thought that he seems more alert!
Today we head to his PT in Sanford around 130 and we are going to be able to pick up our "CuddleBug" his new stroller! Im so excited...
Well things here are off to a good start this 2010 lets hope it continues!

Home Sweet Home

2010-01-09T16:51:00.002-05:00

Well we did end up going home last night. The doctor and resident spoke and came up with a plan that I could agree to. It helps that the resident that was in charge of Noah on the floor (Christopher Jons who is great!) came in and explained things a little bit. It always helps to explain to the parents rather than just state what is going to happen. I wish most doctors would learn this. However we can always count on Dr. Jons to do this thats one of the qualities that makes him such a good doctor. Anyway... so Dr Jons came in and explained that this new medicine is one of those meds that never really leaves the system. Some of it will get metabolized out but most continues to stay in his system and when more gets administered to him that dose builds on the others. This is the reason for the dose to lower. Which makes since. So this being said the doctors sent us home on the 60g dose for 2-3 days. After this we will have a blood draw (i hate those they always have a horrible time getting a vein on him) they will check levels. We are planning on lowering the dose to 45g on Monday unless the blood draw speaks differently.

Last night was our first night home and it was so great to be back with Erik and the girls and of course my own bed. The girls really missed both of us while we were gone and Marissa even made me a card expressing this. It was so special to me. Noah actually did really well. He got up once for an hour with Daddy.... a small siezure awakening him but it didnt last long and it was just a little body tremors nothing major (phew).

He actually has done very well today and has been up most of the day and has began to drink bottles again. For the past couple of weeks we have struggled with this and needed to pump him his feeds for he was coughing on his bottles. Today he has drank 8oz all by himself and I have not felt the need to pump....YAY!!! thats a relief.

Well today has been a day of relaxing and just enjoying being back in the home....time to go bake some banana bread for the hunny! **** I think he missed having his chef at home hehehehe***

Home Sweet Home...or not???

2010-01-08T13:06:00.002-05:00

So sitting here in my hospital room ready to take Noah home...or as ready as I will ever be. Doctor called this morning and was confident that Noah could leave today. Last night they again gave him the 60g dose of the new meds and I questioned this for the night before I was told it was switching to 45g. The resident said he was confident he was reading the orders right and wanted Noah to have the 60g. We did but I made it clear that I was not going home on 45g until it has been given to him here for 24 hrs....especially after having a medium size seizure last night. The nurse said she would write this down and totally agreed with me. The doctor called this morning to inform me that he was confident that Noah was ready to go home and I stated my concern for Noah going home on 45 g when he has been only watched on 60g. The doctor stated that we would keep on 60 and do a level blood check in a week. I was okay with this. Nervous but okay. Packed the place up and got Noah ready for discharge. The discharge resident just came in and announced that Noah was going home on 45g and that Dr. Morrison was okay for us to go home...... needless to say she is calling the doctor ....... I will not take my son's life in jeopardy and go home on a new medicine and a new dose that has not been watched to make sure he isnt gonna stop breathing---turn blue----turn gray---- or put his life in jeopardy..... I dont understand how he could think I would do otherwise....
So as of right now my feet are planted and I will not move until Im comfortable with the circumstances.......

As for my car, I called the insurance company this mornign and I have a $250 deductable to fix it. I dont have that amount of money so Im screwed... Mom said Maybe dad can pull out the dents we will see.....

Good day ends in Frustration!!!!

2010-01-07T20:01:00.002-05:00

Noah has been doing well today. Acted a little funny but I think he needs to get used to the new meds. Had a couple of small spells but nothing major. Had a nice visit with Erik and the girls It was nice to see them. I miss them alot when Noah and I are here. I cant wait to get home and back to normal surroundings as soon as his siezures are controlled.
Tonight ends in frustrations though because sometime this week my van was hit in the parking lot. No note was left and there is a dent on my passenger side front of my van. Just missed the light but dented regardless. Frustrating.....

The first night of our new journey!

2010-01-07T11:18:00.002-05:00

So last night was the first night on the new med. And the first night completely off from the Sabril. Noah slept very well finally. He got up once at 3am and once at 530 sleeping until 8am this morning. He is very sleepy this morning but the doctor said this was to be expected. Im still very nervous coming off from the Sabril. Not knowing what to expect from him and his siezures is the hardest part. So far so good though. Doctor said that he is thinking we will be out of the hospital Friday but I might try for Saturday morning....giving us one more night to make sure of no siezure activity. Last time really scared me and I really want to take precaution. Although....sigh*** sleeping in my own bed would be nice!
Doctor came in this morning and was happy with last night and doesnt want to change anything. So we will see what today brings......

New News

2010-01-06T19:15:00.002-05:00

So last night wasnt much better for Noah and myself. I saw very little siezure activity but he didnt sleep very much either. Finally got him to sleep around 3 am and was awake around 430. At 530 he slept for 2 hrs and really hasnt napped much today.
The doctor came around 5pm tonight and thinks that Noah may be having trouble sleeping because its a new environment for him, the wires could be making him itch and he cant tell us, or he could be having a withdrawal from the sabril. He also said that he thinks that some of Noahs movements that we see are not siezures afterall just movements and that some of the seizures that look like his infantile spasms have returned are just siezures and not infantile spasms. Tonight he is taking him completely off from the Sabril and putting him on a new med called Phenobarbital. This med could cause him to be sleepy. So its really hard to decide whether we keep him on a drug to make him blind or a drug that could make him sleepy. But I figured we could try this new one and if it does take this kind of effect on him then we will stop. But its worth trying to save his vision! And Im more comfortable with taking him off and switching while in the hospital and not at home after this spring's episode! It makes it a little less stressful knowing that he is going on something to replace Sabril too.
Tonight they are also giving him some benadryl in hopes that if the cap is keeping him up due to being itchy it will help as well.
So crossing our fingers for sleep and a healthy happy night.....I end my post!
Update tomorrow afternoon!

Update

2010-01-05T18:34:00.002-05:00

Doctor came in and said he has not seen any ***BIG*** siezure activity on Noah's EEG yet. Sometimes it takes more than once to see one to understand the brain waves. He has decided that it is okay to decrease the Sabril dosage again tonight. We are again cutting it in half again. This is where the problems began the last time so I am holding my breath, praying many prayers, sick to my stomach, and scared to death. Trying to think positive and will this to work this time. We will see what tomorrow brings. My parents will be visiting around 4-5 tomorrow and I will post an update then.

Hope he sleeps better tonight.......Im exhausted....but I dont know if it much matters how much he sleeps...I may be to nervous to sleep well any way.

Good night all....PLEASE keep the prayers and good wishes coming our way! Thanks for all the support.

Until next time.........................................................................................
Good night! We love you all!

The first night

2010-01-05T11:47:00.003-05:00

So the first night was ok here at MMC. Noah didnt sleep very well at all last night. I think it was probally a combination of many things. They are playing with his meds, he is in new surroundings, and he has all these wires glued to his head and doesnt understand what is going on. So far things are going ok with the med changes. He had a small siezure this morning but it was nothing major just the usually siezures he has been having.... as you can see from the picture this morning he was his happy- go- lucky self enjoying all the attention from his nurses and EEG tech. Nothing changes when we go into the hospital he gets spoiled here too. Last night Noah was held by grampa who always makes sure that Noah doesnt go without while we are eatting---Noah got some Chocolate Ice Cream!!! And as usual loved it!

This morning Noah recieved a stuffed dog with a winter hat on its head and scarf. Soft and cuddly. He played with it a little bit...and mommy even got some smiles for the camera

So far so good.....

2010-01-04T20:23:00.002-05:00

We are here at MMC. So far everything is going okay. Noah was hooked up at around 4pm to the EEG and the doctor came in and talked with us. We are going to try to take him off the sabril at a slow pace. Tonight we will split the dose in half and see how it goes. Its very scary for me but in the long run it will be better if we can get him off the sabril. Sabril can cause vision loss of the peripheral vision and doctors have stated that Noah ONLY can see peripherally.

So with fingers crossed and a nervous physique we enter the night lowering meds and hoping for the best.....

................................................to be continued

Recent Picture

2010-01-04T09:48:00.002-05:00

Just another recent Picture ~~~~~ Noah in his Brady Jersey~~~~~~~~~~~

Read Blog Below for update!!!

Recent Picture and Update!!!

2010-01-04T09:41:00.003-05:00

Look at him hasnt he got SO big.... We are improving more and more everyday. Lets pray that 2010 is our year!!!

I havent posted in a very long time...my apologies...Life just sometimes gets the most of me.Happy New Year Everyone!

Noah has been doing pretty good lately. He is getting so big. About 24lbs now! Can you believe it? There was a time when I didnt think we were going to get past 18lbs! Now he's 24 lbs and 3 ft tall. We are really working on trunk control and head control. His head control is coming along nicely... we started working with him with the sippy cup and he was drinking milk so much better through out the day---- however he has phemonia right now and I'm wondering if he is aspirating while drinking through the sippy cup. I have stopped the cup for now and after the phemonia is gone we will try again.

Today I am busy packing....for Noah and I are going to stay at MMC for 3-7days for some testing. They are hooking him up to an EEG for at least three days in hopes to see what his brain is doing and how often he is having siezures. Its usually a three day process but if he doesnt have any big siezures while testing it could take up to 7 days! I'm not excited to leave my home and my nice comfy bed or family but I hope we get some answers--- Im really excited to get some answers.

Well off to finish packing...while in the hospital I will keep everyone posted..

Happy Holidays

2009-11-25T15:33:00.002-05:00

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

2009-10-28T10:05:00.002-04:00

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

2009-10-26T14:03:00.000-04:00

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

2009-09-26T09:21:00.003-04:00

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!!

2009-09-03T10:27:00.004-04:00

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

2009-08-26T10:11:00.003-04:00

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

2009-07-28T10:33:00.002-04:00

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!

2009-07-10T08:50:00.002-04:00

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

2009-06-24T20:09:00.002-04:00

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!

2009-06-22T13:04:00.002-04:00

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!!!

2009-06-07T11:34:00.002-04:00

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!!!!

2009-05-23T15:09:00.003-04:00

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

2009-05-13T14:04:00.003-04:00

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

2009-05-01T09:07:00.003-04:00

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

2009-04-25T08:16:00.002-04:00

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

2009-04-20T11:40:00.002-04:00

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

2009-04-19T08:45:00.002-04:00

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

2009-04-14T08:37:00.002-04:00

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

2009-04-13T10:34:00.002-04:00

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.....

2009-04-10T08:55:00.002-04:00

Epilepsy Walk

2009-04-10T08:45:00.003-04:00

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

2009-04-06T12:00:00.002-04:00

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

2009-04-01T11:06:00.002-04:00

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

2009-03-28T17:58:00.002-04:00

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.

2009-03-26T11:25:00.002-04:00

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

2009-03-25T09:42:00.002-04:00

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

2009-03-23T15:20:00.002-04:00

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

2009-03-23T08:40:00.002-04:00

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

2009-03-18T19:36:00.002-04:00

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

2009-03-02T13:35:00.003-05:00

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

2009-02-21T12:48:00.002-05:00

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

2009-02-17T11:09:00.002-05:00

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

2009-02-06T13:08:00.002-05:00

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!

2009-01-31T14:33:00.004-05:00

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!