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!