Dec. pictures and update Dec. 8 2009

So here are the photos i ended up using for my card. As i was not certain on any one and if i had taken any more photos the kids would have flushed the camera on me i put this group together in one card! They are all black and white and i think it makes a nice christmas collage!!
I know i said i would talk more about the happenings in our family.. i suppose i shall go backwards!! This past month Willem and i spent 2 days in the hospital for an
EEG. Willem falls asleep at unusual times and his school nurse was convinced he was having seizures. He isn't!!! At the hospital he fell asleep eating ice cream in the afternoon as well as at dinner as he does if he does not get a nap during the day. He went in and out of sleep with out anything unusual. I blame his school for falling asleep there as they only had a pre-k 2nd year in the afternoon which SO does not work for us!!! He is missing SO much school because when he falls asleep before school i cannot get him to wake up right away. His having to go to school in the after noon has added SO much stress to my life i cannot even begin to explain. Not only with him needing to sleep at some point in the day but also with Helena's nap trying to get her to wait until after Will is off to school at 12:30. (then waking her to get Ben at 2:30) YET i am stuck because he is learning so much! Learning his letters even writting some of the letters on his own. And he and I Really like his teacher she really gets him which is an awesome thing. I wonder when he will grow out of his need for a nap in truth i anxiously await that time. I blame it on his very low muscle tone. How much energy it takes from him to do the simplest of tasks and all the ones he still has not mastered! He is finally getting his own underware and pants on and off. BUT cannot get his own sock on or navigate getting his own shirt on. My phrase is that he has a hard time with his fine gross motor skills, the big things that take detail like finding the arm hole in a shirt. Pressing certain buttons on toys he still has difficulty. I really wish we knew other moebius children to know if they are going through similar issues. I did meet so many different people at the conference a year and a half ago but i am so not social that i never really made a contact with any of the other moms. That is a goal of mine for this coming July!!!!
So we just keep going and love each other a lot!!! I am tired but will try to be better about logging on to this space were it feels good to think out loud.

s

Dec. 7 2009

Wow, i haven't written anything all year!! And now today as i try to capture my three lovely children in a photo for a christmas card which puts added pressure as it is for a card. I take pictures of them all the time ~ I am telling Benjamin to smile, trying to get Helena to sit and look up and have Willem focus at the camera and my sweet Willem says, " I wish i could see my smile in a mirror."
He feels it inside, he tries to show it on his face and when he does his eyes go out of focus, his mouth doesn't change... such a simple thing that so many people will never once in there lives think about, not knowing that there is a little boy out there that just wants to show it on his face! Never knowing there are thousands of people with Moebius Syndrome. we stopped that photo shoot the moment to get the photo had passed. i love my kids so much and i get so darn stressed over their christmas picture... there is so much more to the season than a card.
But i will try again tomorrow and when i get the right photo i will post it here.

NOW that i got that out i should write more about all the CRAZINESS that has been going on in our lives this past year... i will soon?!?!?

Febuary 11th 2009

Where to begin ~ i suppose with today!! Willem had a second strabismus surgery today. His first was 2 years ago, at 18 months of age. He was AMAZING.. i was so nervous he really did not have much of a clue as to what was going to happen. He kept on asking mike and i what tools the dr. is going to use and our reply was, dr. tools!! because of his Moebius Syndrome he will never have outward lateral eye movement, this was to center his eyes more. He had started pushing in at his eyelids about 4 months ago and we think it is to help him focus. I say "think" b/c at the age of 3 he does not have answers to why he is poking at his eyes. He had been wearing prism glasses and this should let us discontinue with those. Although he will still need his sunglasses for outdoors with his inability to squint! Willem's eyes are very red and he has some red tears, they are a bit swollen as he had the out side muscles tightened this time. The first they released the tightness on the inside(closest to nose)! Now that we got through the surgery i just hope and pray that this is it and we won't need to do anymore fixing!! As the general anesthesia is so scary for me. My little baby boy has been put under 3 times in his short life and i have NEVER once in my 34 years...crazy!
He is really doing so well in preschool. Physically i feel that he is understanding his body better but he really has to think about it. To jump or in therapy he does sit-ups and when we are playing and dancing around the house and i will ask him to do one i can see his mind working so hard to tell his body what to do!!! In O.T he is working on cutting and holding pencils. At home we have decided to make him feed himself!!! (ABOUT TIME) He is doing a great job, yes it takes longer and it can get pretty messy. I thank Helena for this step in our lives b/c I was complaining that i was not introducing solid food to her b/c i was still feeding Will. So she has helped her big brother grow up a bit faster!!!
In truth so much of it is my enableing him!!!! Just last week at my sisters we sent the kids out to the back yard and i was all ready to bundle up and go out with them b/c i had to be with willem.(Even though she sends her kids out in a fully secure closed in back yard all the time) So i said i'd wait until he needed me ~ I never went out!!!!!
So neither moebius syndrome or i need to hold this little guy back he truly can do anything he wants!!
EVEN his face!!! We are having great sucess with our speech therapy even getting movement, Mind you it is a lot of work BUT it is working i have been know to cry a bit in amazement!
He is my super hero!!!
Then there are my other 2 super heros!! Ben is awesome, funny, smart, he has been into quoting his favorite movies and even reacting them! (such a guy)
Helena is crawling and pulling herself up to stand At 7 months old!!! I remember how hard I worked with Willie to crawl in P.T one of us holding his torso the other his head up and now to see her get it with out a second thought! The brain, nervous system really the human body is amazing. i need to sign off as it may be a very long night here!