"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!!!