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.