Celebrate good times!!!

Noah is doing so well.... we went to the neurologist last week and he wanted to wean him from his clonazapam and see if it had any effect on his 02 requirement..... We started the wean on Wednesday and low and behold he came off the 02 from 9:30am until 5 pm!!! I was so excited but thought it was a little coincidental... Friday he did well again but we had a pediatrician appt and some errands so we really couldnt test it all day. At the pediatricians office I asked if it could be the med change that quickly and he said that he thought so. The nurse that night was even able to take the 02 off while he slept! I was super excited. He has been off 02 since Friday night and doing well!! He has had a couple of siezures but not horrible ones. I thought he was never gonna get off the 02 but things look to be looking up! YAY!!! I cant believe he is turning 5 years old in like 12 days. Its crazy!! The things I have learned in these five years! Some days are harder than others but I wouldnt change having him for the world. He made me grow up quickly and really learn to stop and smell the flowers. Every day is a blessing! Well his birthday party is coming close..hopefully we will have a good turn out. We changed the usual Sunday birthday to saturday because Erik is leaving on a jet plane!!! (LOL) the next day going to Chicago for work. We will miss the Epilepsy Walk this year because I will be bringing him to the airport that day but I am still raising money for such a important cause to our hearts... Raised $150 so far $50 more and I will reach goal!!!

Exciting Days!!

So as the subject explains....Noah and I have had a couple of exciting days!!! Yesterday it began he was off 02 from 9:30am until about 5pm....doing well even while sleeping. We put the 02 back on around 5pm because his stats started to fluctuate more and we didnt want to over tire him out. This morning he was at 100% for a stat on the 02 so I took it off and we are staying around 95%!!! Maybe there is still hope to get off this 02 afterall! We can all cross our fingers and hope!!!! That would be so great. Noah has a neurologist appt on tuesday and we are yet again trying to wean him from his clonazapam in hopes that it will help with getting him off his 02 requirement. We started weaning him on wednesday.....could this be working already??? I can only hope!! I've lost 15lbs since January and although dont see much of a change in the mirror I was so excited to be able to fit into a pair of jeans today that I havent been able to wear for 3 months!!!! Let the pounds come off!!!!

PLEASE HELP!!!

Please go vote today! Help us win a new handicap accessible van for Noah! The more votes he gets the better the chances...you can vote once every 24 hrs until May 13th. Please help us it only takes about 20 seconds of your time per day and it would make such a difference in our lives. Please share this with your friends as well...post on facebook, twitter, or email your friends.... help us get the most votes!!! Vote here: Noah Quint | Mobility Awareness Month - Vote For Me!

Epilepsy

Every year around this time we usually participate in the Saco Maine Epilepsy Walk. This walk is a very important cause to us. Noah struggles with siezures on a daily basis and this walk will help raise money to hopefully help find a cure or other meds that could help us and everyone else fighting with such a horrible condition. This year we are unable to participate in the walk because I will be bringing Erik to the airport that morning for a work commitment that he needs to fly out for. But I couldnt just sit back and do nothing. So I have set up a fundraising page so that I can still do my part. Please take the time to donate to our page. I understand that the economy is really horrible right now but this cause is very important. Can't u skip your coffee for the week and donate just $5. Every little bit helps. Noah is doing ok still. He still needs the 02 to breathe but can be off the 02 for about 30 min on his own. On a good day he can even be off for about 2 hrs. But those days are far in between. His siezures are still frequent but are small in comparison to what he was having when his 02 stats kept dropping. However small they are it still breaks yr heart as a mom to sit and watch or hold your baby as he siezures and not be able to stop them..... lately they have only been lasting about a min and a half to two minutes. But its the longest 2 minutes of yr life. Kindergarden registration came in the mail the other day. I cannot believe he is five already. Where does the time go? At least we will be staying at Morrison Center as long as nothing changes.

Noah wishes.......

Met with Make a Wish last night. We talked about many ideas but I think the one wish that really stood out is for Noah to get his very own new bedroom makeover.... We also suggested Central Air for the house too or a new Handicap Vehicle for the family. We will see what they choose I think however they r going to choose the bedroom. Hopefully he will get a new special needs bed and some sensory toys for him to play with at home. How exciting to wait to find out what wish is going to come true for him. Finally something to look foward to for him!!! Keep you posted! Noah is doing alright...very sleepy today but its because of the heat!!! Yuck!!! Summer is on its way. Im holding my breath for summer because I really think this is gonna be a tough one for Noah with his breathing and etc. We will hope Im wrong!! I fell this last friday so my working out had taken a break for a couple days I have to get back into it but right now I need to let things heal first. Chiropractor had to adjust me in like 17 places today...usually its only 3!!! Way off!! Sore :( but I will live!

Weight Off my Shoulders, etc

Met with RSU#57 Special Education department yesterday to talk about what things Noah will need next year for kindergarden and what we wanted. We talked about Noahs many medical issues and his needs for school including a 1:1 Nurse with him! The school's Special Ed Director said that it isnt written in stone but her suggestion and its probally what is going to happen is the school is going to keep him at the Morrison Center!! YAY!!! I thought this was going to be a huge fight and it doesnt look like its going to be!!!

My weight loss progress is going great. Ive been using myfitnesspal.com and exercising and trying to drink my water since Jan. I had a bump in the road when Noah was in and out of the hospital but I started back at my weightloss toward the end of March. Doing well so far but its a struggle everyday exspecially now with the easter candy in the house!!!

MyFitnessPal - Free Weight Loss Tools

Baby Steps

Noah has returned to Preschool Part time!!! YAY!!! We are trying to let him start back Mon, Wed, Fridays. We went Mon & wednesday this week but unfortunately we had no nurse or transportation for today and mommy had some important errands she needed to run today!! But he seems happy to be back in school and is doing well.

We got the results back from his blood work and it doesnt appear that Noah is allergic to Barkley. The family was happy to get this news. Which is great News for Noah and his new friend...Barkley likes to lay under Noahs feet or beside his spot on the couch on the floor. He is already Noahs protector.... maybe we can train him to carry Noahs 02 tanks when he gets older....lol...Anyone see that special on the TODAY SHOW??? Little girl had a service dog who carried her 02 tanks for the family..



Monday begins the fight over keeping Noah at Morrison Center vs. Kindergarden in the public schools. Im holding my breath and hoping for the best but ready for a fight if it comes down to it. Monday we meet with the Special Ed Director at RSU #57 and go over Noahs needs and basically teach them about what Noah requires and explain to them our feelings over the transition. Im nervous and sick to my stomach but I know how to really advocate for him. Mom & Erik are both coming with me so that will help.

I cant believe in less than a month Noah is going to be 5 years old. Where does the time go? He is getting so big!

Exciting NEWS!! We meet with MAke a Wish on April 15th. Noahs wish granters will come to a meeting here at the house to figure out just what Noahs wish might be!!!

Well busy busy busy...But Noah is doing ok right now. Still on oxegyen and still having some small siezures almost on a daily basis but happy and home!!!