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!