Wishing for a Happy & Healthy 2012

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!!!

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!

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

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

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

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 :(

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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!

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

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!

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....

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!

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

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

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

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

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...