Angel Wings

Many of u already know that my little boy got his wings last Sunday Sept 30th and went to heaven. This is an extremely tough blog to type because mommy misses him greatly. We took him of life support on Sunday the 30th and it was quickly apparent that he was not going to make it. We held him and he was in mommy's arms when he passed. Its tough everyday without him here. No formula to make, No meds to draw, no morning snuggles...I wish he were here. But someday maybe it wont hurt so bad!

First Week of Kindergarden

Noah had his first week of Kindergarten this week. He did okay with it. Was very tired most days after getting home from school and slept alot but I think its just adjusting to the new schedule! We will see!

I went and got my knee looked at again and am being referred to a Dr. Piers in Portland for a second opinion! I hope I get some answers so that I can get this knee fixed!

Next Saturday is Noah's Fundraiser Pasta Dinner from 4:00-7:30pm. Looking foward to a good turn out this year and not as hot weather...but this week will be a busy week getting ready for the big day!

First Sea Dogs Game

We had a busy weekend this weekend. After Fridays festivities we went to the Portland Sea Dogs Game on Sunday. Make A Wish was having a special day at the Sea Dogs and we had been invited. Noah came home with two baseballs and really seemed to enjoy himself!

Noah got to go out on the field with Daddy and even got to shake hands with the players.





And he definitely had fun! Look at this smile!

What a transformation!!!

Make A Wish did such a wonderful job on Noah's room!! IT is so wonderful. They also sent us to Boston Aquarium for the day while they finished the room and it was so great to have a day full of fun and enjoyment for everyone including Noah. He loved some of the bright colored aquariums. Hope you all enjoy the pictures below.

And Noah absolutely loved his new room!

"Only A Day Away"

MAke a Wish is on their way!! His room is completely cleaned out and ready for them. We washed the carpet this week and we are just anxiously awaiting the transformation. Tomorrow they come to paint his room and Friday they come to finish the job. Sending Noah, Myself, Daddy, Meg, Marissa, Grammy & Grampa away on a fun filled day full of surprises...
These are the before pictures:




After Pictures will come soon!!!

Ear infection has cleared and Kindergarten starts next week...phew...kindergarten mommy cant believe it. We have decided to try Noah going an xtra hr and see how he does...so he will be gone from 9:30-2:30 :( mommy has mixed feelings about this but knows that it will be wonderful for him!

Another Ear Infection

Noah has another ear infection again. This time its the left ear. His symptoms for his ear infections are changing and its hard to place that in fact he has one. He doesnt run a continuous fever with them anymore...

Other than that things are still running smoothly. Havent heard from the dentist office yet about his OR visit. Preschool finished on Wednesday so now he is off for a couple of weeks and then he begins kindergarten!! Mommy is so not ready for kindergarten....

My knee is still about the same...PT went ok on Thursday. He actually taped my knee & the tape pulls the knee cap to where it is suppose to be. I think it actually helped. However the tape is getting loose and now it has begun popping again here and there. I go to the ortho dr on Monday we will see what he says!

Make a Wish is contacting my very frequently now and asking tons of questions about his room remodel. They say its only a couple weeks away now!!! :) how exciting!

Noah is going to his first Sea Dogs Game on Sept 2. Make a Wish families get free tickets so we are going to go and have fun!

Planning for the dinner is well under way and going pretty smoothly!

Busy! Busy! Busy

August has been a very busy month. Lots of doctors appts and lots of news.

The beginning of the month we went to Boston for Noah's eye apt and VEP testing. The VEP test showed that Noah had very poor vision but vision all the same. The test measured his eyesight at 20/190 in the right eye and 20/232 in the left eye. They also agreed with the eye doctor in Maine that Noah does have Central Vision Impairment. All his eye structures are perfect but what the brain See's is something different because of his brain malformations. Boston also found that he was near sighted and also has a astigmatism. They gave us a prescription for eye glasses for him. They are hoping if they clear up the picture that the brain sees it will help Noah with his vision! We will try it!

We also met with Noah's scoliosis Doctor this month. So a year ago Noah's curve in his back was 34 degrees...this year it had only moved 6 degrees and he measured at 40 degrees. This isn't great but it was OK. The doctor says he isn't worried until he gets to 60 degrees but wants to keep a yearly checkup going. It was a little encouraging because the last apt his curve had changed 13 degrees so what we are doing is slowing things done. He said to continue the laying him on the opposite side of his curve and using the stander. I think the kenesio tape and chiropractor is helping too.

Next we went to the dentist. Noah has cavities in the back of the mouth mostly on his left side. Which is mostly because he is more sensitive on this side of his whole body. I'm waiting for a phone call to set up a OR visit and they are going to cap his teeth and pull any lose teeth as well. I'm nervous because of the need of anesthesia but I know he will do fine.

My knee is still doing about the same. Been doing my exercises most of the time (Ive missed a few days) it is doing a little better but Im still struggling with it quite a bit. Off the crutches mostly. Still using them for the stairs and when the knee begins to get sore. Wish I could snap my fingers and have it healed.

We are working on getting ready for Noahs fundraiser dinner. Its going to be on September 15th from 4:00pm-7:30PM. Hopefully it wont be HOT and we will have a better turn out!!!

Guess who???

Guess who Just lost his first tooth!!! Thats right! My little man!!! He is growing up so quickly...Mommy is unsure she likes this...Kindergarten in the fall and now he is loosing teeth!!! WOW Time flies!!!

Good Morning!!!

So we had a busy week last week.... Noah is still doing well. We had to get blood work done because he has bruising all over his body and I was worried. The platelet test came back in the normal range however it was on the lower end of normal. Doctor said this would explain to us the reason why Noah easily bruises. He isn't worried yet about intervening we are just going to keep an eye on it.

On Friday I also got a call from the pulminologist office with good news. Noah's lab work for the allergy panel came back negative on everything...he isnt allergic to dogs, cats, pollen, etc. They said the draw came back that he has no allergies to these things however he can still have a sensitivity to some like pollen.... so that is good news..

UPDATE ON MY KNEE: The Orthopedic found that I have a knee cap that is not tracking right. It is slanted and due to the fact that I also have loose joints and because I have more muscle on the outside of my leg than the inside so the knee cap is being pulled more to the outside. I also have arthritis in the knee and swelling. I have to do PT for four weeks and then I go back to see him. My insurance will only cover two days of PT and then its on my own. But I need to work at it. If the PT doesnt help it then surgery is the next solution... I dont want surgery!

Erik got a piece of metal in his eye this week at work and had to go to the eye doctor Friday to get it removed. He was in a lot of pain friday night after the eye surgery but is doing better now. Last night he was able to drive a little bit and he says its more just aggravated now it doesnt hurt. Im glad that he is feeling better.

Noah has a few doctors appts this week too. Wednesday we head down to Boston again. But this time its for his eye sight. We are having a test done to find out just what his brain comprehends. Im a little nervous about this test. Im worried that maybe I dont really want to know the answer to this. I really am hoping for good news but I dont know if I want more bad news either. All I can do it pray that this time its good rather than bad. We have to do this test in Boston because Maine doesnt do this test with patients with siezures. It should be an interesting day.

Thursday we have an appt with his neurologist here in Maine. Which will be exciting to go to because Noah will finally have successfully come off his Klonopin med as of Tuesday!!! We have been working to get him off this siezure med for about a year now and FINALLY it looks like we will be successful!!!

Well...life is good right now and I hope it stays this way!

Smooth Sailing

Noah is doing well right now... he has gone back to school for the summer program and really seems to be enjoying it. The first day of school for the summer I had to drop something off to him and he was all smiles... The nurse reports that for the most part he is staying awake and very vocal during school. Which is nice to hear!!!

Make a Wish came by last weekend and gave Noah his envelope with what wish they will be granting inside....they are going to be remodeling his bedroom...which is very exciting.... They told us that insurance may pay for the bed so if we let insurance cover the bed they would put money into more of the sensory type stuff he needs... I think we are going that root. Things should start happening with that around September!

Well...I have managed to mess up my knee which has really put a snag in our lives... Im on crutches which is difficult enough but then adding taking care of a non ambulatory child on crutches it is even more difficult. Thank goodness my girls are home and I have such a wonderful guy taking care of me when he is home too. Im going today to the Orthopedist to find out what he thinks. It either hurts when I put pressure on my foot or it pops and hurts when I put pressure on my foot. Had an MRI done last week and they didnt see anything but Im in lots of pain. I think I may have hurt it while exercising this year on the treadmill or in the pool because at first it was just hyperextending when walking and I ignored it because I see enough DR's with Noah and it wasnt a big deal. July 3rd I got up from the dinner table and my knee popped and it killed!!! and Its hurt ever since!!! So Im holding my breath as to what this doctor is going to say but ready to find out what is wrong so I can start the road to getting rid of these darn crutches!!!

Other than that summer is great. Spending most of it with the girls while Noah is in school. Spending time with the puppy who is getting big!!! And its fun to teach him new tricks! Just recently taught "PAW". So cute!!!

Love is in the Air!!!

Welcome Home to Great Grammy & Great Grampa!!! Noah is so excited your here!!! And mommy is too!!! We love you!!!

Pulminologist Appt

Tuesday Noah had a Pulminologist appt. It went ok. The doctor has switched some of Noahs meds and increased some of them to see if this will help. He increased his Zantac dose because he feels that Noah might be refluxing a little which is causing him to asperate. He also increased his Nebulizer treatments to twice a day to see if this helps too. He has decreased his Robinul med (the med that helps with controling his saliva) He did this to see if Noah was drying out to much but told me if he started drooling to much than I could increase back to regular amount. Last night we had to go back to regular amount. The doctor did feel that Noah would be on the oxegyen now for the rest of his life. We kinda new that but it really sucks knowing that there really isnt any hope that he will come off now. Dr. Mellow felt that this was the beginning of a long road ahead. :( But we will hold our heads up high and we will not stop trying to prove these doctors wrong. We will cherish the days we are all together and not give up!!! He is so cute! Lately he is mimicking us... he is laughing out loud and I've even got him to try to say "LaLa" The pediatrician even witness some of this mimicking and told us this was more a 6 month developmental stage.... here Noah is proving Dr's wrong already. He starts Preschool Summer School next week. Mommy is so excited for him because I actually feel that he is ready for this. He will return going 5 days a week. Im so proud of him. We are again trying to get him off one of his siezure meds and (knock on wood) this time seems to be more successful than the two other times we have tried getting him off this med. We are down to only having to give him a half of the Klonopin once at bed time and we started out on 1/2 in the AM and a whole in the PM... he will stay on this dose for 2 weeks (1/2 in the PM) and then he is off the medicince!!! One siezure med gone (crossing fingers) he is so much more alert since this change and doing so well. LEts hope it works this time! We had a Graduation Party for Noah last weekend and it turned out to be a wonderful day. We had great weather and lots of family and friends show up to celebrate such a wonderful accomplishment.

Progress

Noah is doing better we still have tough days but there is more good days than bad again. I think alot of it is allergies now. The scariest things right now are the mucus plugs that he keeps getting... he cant breathe thru them and all u can do is try to help and wait for them to pass. We've had to call the ambulance twice now because his 02 stats drop and he turns color on us. We have a pulminology appt on June 26th and hopefully the specialist can help us with this issue. I hope so I panick everytime..siezures are one thing to handle but when your baby stops being able to breathe its horrible!!! I didnt think it could get worse than the siezures...I was so wrong!!! On a lighter note... Noah graduated Preschool June 8th. It was such a wonderful day. So nice to be able to celebrate such an accomplishment for him!! He was so cute in his cap and gown and stayed awake for the whole ceremony!!! His last day of preschool was June 12th and then he begins his summer school on July 5th!!! Then in Sept he starts KINDERGARDEN!!! Wow where does the time go?

Still on life support

So Noah is still on life support...they were able to take him off the EEG this morning because his siezures have stopped and he is back to baseline siezure-wise.... They were going to try to remove the life support today but decided against it. They decided that they wanted to make sure his stomach surgery from 2008 was still intact before removing. They also wanted to give him a med that would help with swelling in his throat from removing the tube on Wednesday and having to replace the tube.....and they wanted to give him lasix to help with the water retention that he is having...the plan if all goes well is to try tomorrow morning if all goes well... They also want to try to lower the stats on the respirator and make Noah do more of the work today. They are being very careful so that the next time they remove the tube it doesnt have to go back in. They are unable to lower the stats yet because while in for his test he woke up and began to struggle a little bit with the tube being down his throat so they had to sedate him more than they usually have too... The test showed that his stomach surgery is still intact and doing well... So now it is just a waiting game.........crossing fingers for tomorrow!!!

On Life Support at MMC

So we tried to get Noah off Life Support today and he wasnt able to stay off they had to put him back on...he was breathing to fast and had to much salivia and wasnt protecting his airway....will try in another couple days but will be on life support a few more days.... DR thinks this isnt permanent but it could take anywhere from a couple of days to a couple weeks for his lungs to be strong enough :(

One Step Foward Two Steps back

Noah did so well last week. He was off 02 and almost siezure free.... smiling and babbling...Life was so great! I was so excited...I couldnt say it enough "Noah is off 02" and then Saturday the siezures began again....and then yesterday he started requiring 02 again and we are back to square one. It is so frustrating some days I just want to scream at the world....I know deep down that needing 02 isnt the end of the world for him but it just sucks... I thought we had proved the doctors wrong again. I thought we overcame it... His birthday is tomorrow..... 5 years old...I really cannot believe it....Its been such a journey of ups & downs and its been worth every minute... He is a fighter and Im so proud of everything he has accomplished in these 5 years. Im proud to be his mom. He is such a special little guy.... and he brings so much joy to my life.... Preschool graduation is coming....June 8th...wow....what a accomplishment for him!!!

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!!!

Things Looking Up Again

Noah is doing ok. He is still on 02 but he is his happy smiling self and besides a few small siezures here and there he is doing good. PCP is even talking about sending him back to school at a reduced amount of days than he had been going but still returning to school maybe tomorrow. We still have times during the day in which he is filling up with salivia and needs to be suctioned but only small amounts of time. PCP thinks it just might be last weeks heat and his siezures acting up a little. But like we have said before we would rather some siezure activity and more alertness so it comes with the territory...

Noah and the family has a new member of the family. We got him on March 17th and although he keeps me busy during the day between himself and Noah we love him and he has brought more laughter and smiles into the home. Expecially while things have been so tough lately., He is good for the soul!



His name is Barkley and he is 9 weeks old. He loves Noah and is already his watch dog. If Noahs machines start alarming he is the first one by Noahs side. ITs really cute. When Noahs in his chair Barkley sleeps at the bottom of his chair....

Had a scare last week when Noah started getting congested. Thought he might be allergic to the dog. After going to the PCP he didnt really think that it was allergies. I asked him to run the blood test anyway to be sure. They were going to run one that showed if things were elavated which would say he was being exposed to something he was allergic too. If this came back elevated he would run a more in depth panel to find what allergies he has. Waiting for results.....but his congestion has been better so Im thinking that it probally had a lot to do with the heat..we may be in for a long summer....

We recieved great news last week. Noah has been approved for a wish from Make-A-Wish. We should be having a meeting real soon with a couple of staff members called Wish Granters and they will help us to figure out what Noahs wish is going to be! Very exciting. Have no idea what he is gonna wish but it will be fun!

In the process of working on getting a fundraiser dance in the works. I have a very wonderful women in my Community named Gina who is helping me to get this set up. So we are in the beginning stages of this and a few other fundraisers to help us to raise money for Noah and any future needs that arise! Busy few weeks!

Tough Discussions

Noah is still struggling and we are not sure what is really the underlying issues to his new 02 requirements...we are hoping and praying its med related and Boston is lowering one of his seizure meds to see if this makes him less sleepy and will breathe more efficiently....Boston did have encouraging news that they check his Co2 every visit as well and there C02 levels have never been over 27. So this might be complications due to siezure meds or this might still be a new pulminary issues. If playing with some of his siezure meds doesn't work however we will need to see a pulminologist and find out our options.....we spent 2 hrs at the PCP last night discussing some of the options in line in the future and talking about future preparations :( Lets hope and pray these preparations are not needed for a long while!!!

Tough News to Handle but not the worst

Unfortunately yesterday we didnt get good news yet again..... Noahs blood gas test came back at the top level of normal. So it isnt bad enough to have to talk about having to interviene to much yet but it is a scary thought that his lungs are slowly failing.... :( they said they havent given up hope that this 02 requirement isnt Med related but we need to prepare ourselves.

The doctors also said we have to find our priorities do we want Noah siezure free and so drugged up hes sleeps or do we want him alert and having some siezures. I want him alert and able to enjoy some of what life offers...

After having a night to deal with my emotions and etc... I know that even though it wasnt the best news last night we still have Noah and thats all that matters. If he needs to be on 02 for the rest of his life ----thats what he needs! And hopefully thats the only thing we will have to worry about for a long while....We need to enjoy him while we have him and not sit and worry when r we going to loose him.... and Im going to work on this fact......and u know we've had drs tell us things before and Noahs proved them wrong HE CAN DO IT AGAIN!!! My birthday wish is for him to be happy and as healthy as he can be....with or without 02!!


Im just gonna try to hold strong ....and keep praying!

Back at MMC

Noah is back in MMC after fighting to get Drs to answer my calls or call the PCP back for 2 days. He was admitted into Barbara Bush Childrens Hospital this afternoon by the neurologist in hopes to find answers to why Noah cannot come off the O2. Noah is hooked up to EEG tonight.... and they have tried twice to get blood from him so they can get a blood gas level to see what his O2 in his blood is. Dr has asked me what I think it could be and I told them that I think its med or siezure related....Dr said she was hoping it wasnt this but wanted to prepare me that he might have had to many siezures and now his brain isnt giving him enough of a message to breath on his own....we are all praying this is not the answer we find....

Im praying this is not the answer and the neurologist doesnt think that this is the cause however we have to pray that it isnt and hope that he is right. If it comes down to that being the answers we recieve we will deal and strive foward and at least we will have some answers and I wont be home worrying and thinking the what ifs. I just want answers. I really would like to have answers with some better results though. Lets hope I get some good news for my birthday present from Noah.

Frustated!!!!

So yesterday we took Noah for a follow-up appt to his PCP. The PCP agreed with me that he is still struggling with siezures and the meds being to high. He said repiratory wise there is no reason why he is requiring 02. So we left the office with the PCP telling us he was gonna get in contact with the neurologist and get a plan in place and he would get back to me. I waited all afternoon and then finally at 645 he called saying that the neurologist never got back to him yesterday and he would try again in the AM today. I have recieved no calls still. Im getting really fed up that the neurologist doesnt wanna try to fix this! I want my son back. I know he may have siezures from time to time and I know life isnt going to be perfect but we need to figure out a happy medium that doesnt require him to need 02 all the time and that doesnt require him to need to sleep all the time from being to drugged up....Im so frustrated!!!

Still struggling :(

So Noah is still home but he is really having a tough time this time fighting these siezures. His viral bug has been completely healed but we are still struggling with the right med dose to control these siezures without side effects. We have been back and forth to Maine Med and the neurologist office this week trying to figure out what to do. Yesterday we were brought back to MMC because Noah began having siezures in which his O2 stats would drop into the 80's. The nuerologist came and saw us in the hospital and decided to increase his clonazapam back up to the dose it was before we began trying to wean him from it. Eventually hoping that we can lower some of the meds that had been increased while in the hospital but we need to do one thing at a time to be sure of what is helping. This morning after the med change he is having trouble staying off the O2 and is very sleepy. He has periods of alertness but is sleeping most of the day away!!! Mommy just wants Noah to be better.
It seems like its a never ending struggle to get things back to normal again. I wish we could rewind back to three weeks ago when things were going smoothly. But we cant so we deal with what is dealt to us and hope that things begin to look up again. Hopefully we will figure all of this siezure stuff out soon and Noah can return back to school. He has been out of school for two weeks now.
Please keep prayers coming...there has got to be some good days on its way....

Home Sweet Home Again-- hopefully to stay :)

Noah came home on Sunday afternoon from MMC. He is doing and looking so much better. Very sleepy today but the poor thing has been through so much!!! So happy to be home. And to have my little boy home and feeling better. ITs been a tough week and Im glad he is such a fighter and we got through all the obstacles.

Mommy is doing ok. Im very exhausted and overly emotional now. But I got through all that was dealt my way and was strong in the moment. It really was a scary week and it made me realize not to take any day for granted.

He is doing well and we have a follow up appt with the PCP tomorrow and hopefully he will return to school wednesday....we will see how he is doing!

Back at MMC

So yesterday afternoon Noah was discharged from MMC. We went home.... through the evening being home it became extremely clear that he wasnt himself. Very twitchy and hyperactive and he wouldnt sleep. It was making me nervous. This morning I decided that I didnt know what was causing it and I didnt want to take the chance that it was siezures so as much as I hated the thought I had to do what was best for Noah and bring him back to MMC.
Apon arrival he was very out of sorts and wouldnt stop moving and twitching and very irritable. Thankfully some of the doctors who saw him this last week came and saw us down in the ER and they thought that he needed to be readmitted.
The doctors called the neurologist on call and he thought that maybe the hyperactivity and twitching could be caused by his increased Keppra dose and the first step was to reduce the dose and if things didnt seem to calm down they would do an EEG tomorrow. They did give him a dose of Diastat in the ER and it seemed to settle him for a while and he doesnt seem to be as hyperactive now. However last night Noah only slept a total of 2 hrs for the nurse. Which was also 1 hr here and 1 hr there it wasnt a full back to back 2 hrs of sleep. Tonight Mommy has tried everything to get him to go to sleep. I have rocked him, cuddled him, hummed to him, rubbed his head...and even crawled into bed and snuggled and his eyes are wide and he isnt going to sleep. Its gonna be a long night.
I hope tomorrow brings answers and they figure out how to help him. My poor little boy has been through so much this week... Keep those prayers coming...and hopefully the next time we go home it will be for more than 12hrs!!!

Home Sweet Home---I can almost feel it!!!

So Noah is returning to himself more and more everyday. He is doing great actually. We were moved up to the Barbara Bush wing on Monday night around 9pm. Yesterday he woke happy and alert, and very vocal. He was almost back to himself. Still congested on/off and still having a few siezures but Drs say his lungs sound great and that they are ok with a few siezures expecially if they are short ones in length. The neurologist came in to the room last night and talked to us and answered questions and we discussed how in the future we are going to address his med levels that tend to dip when he gets sick. This seems to have become a pattern. Noah gets sick and runs temps and then he seems to end up having subclinical siezures because his meds are at low levels. In the future we are gonna be able to come get his levels checked when he gets sick and hopefully we can catch them dipping before they get him into siezure issues.

Dr's have suggested today that we might be going home. That will be nice and I think I am comfortable with that. This momma is exhausted and still somewhat stressed. This has been a long week for me and very emotional draining. Im so glas that he is such a fighter. Im so proud of him....and I was so excited to finally be able to hold and cuddle him yesterday...

We are slowly but surely getting closer to be able to go home and Im so glad. I miss my bed.... and I miss my sleep..... LOL!!! Thanks to all for the prayers and positive thoughts.... The healing power of prayers is so wonderful!!!! We luv u all!

The hardest days yet!!!

So Noah is back in MMC. He came here on Saturday night by ambulance because he was having trouble breathing on his own. He kept turning color and his stats kept dropping. He is now in PICU. Sunday morning they had to put him on life support because we found he was having continuous siezures which was causing him to have respiratory failure. Yesterday he was able to come off of the life support because his siezures had stopped being continuous. He is still having on/off siezures and he is still very congested in his breathing but thank god that we have overcome the continuous siezures. I have never been so scared. They had a very difficult time to get his siezures under control and we were getting close to running out of options for the poor little man. Finally at 10pm on Saturday things began to look up.

He has a central access so that they didnt have to keep poking and prodding to get blood or administer IV meds. IT makes things much simplier.

We are not out of the woods yet but are improving please keep him in your prayers....

Poor Little Man

MY little man has phemonia again... and is still home but not feeling very well. Last night I was up until Midnight with the nurse and Noah because he was running a temp of 105.3 and after tepid baths and cool cloths it took 3 hrs to bring it down to 100.9....very scary. This morning he is doing better...very sleepy and out of it but his temp seems to be down.... hopefully the antibiotics will begin to kick in.
We have a doctors appt at 11:45am this morning...we will see what the doctor says...

Lets keep him in our prayers and pray for a fast recovery!!!

Checking in....

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

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

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

Things continue to go well....

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

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

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

So far so good....

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

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

Baby Steps here we come

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

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

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

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

Happy 2012

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

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

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

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

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