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!!!