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!

Nov. 19th 2008

Again it has been so long since last i wrote!! All is great with my busy little family... Willem has made a great transition into preschool. He is getting all of his therapies there as well as socializing and just being there with out me!!! Which is good because i do baby him a bit too much . I find myself picking him up too much... he can walk just fine now it just takes time. I get a bit impatient and next thing you know i have him on my right side and carrying the baby in the other!! My new mantra is SLOW DOWN!!!!! ~ We'll all be happier!! I have been doing speech therapy with willem here at home daily and he fights me some as he would rather not be doing it but i try to make it as fun as possible even bribe him with forbidden treats (m&m's) I think i am seeing some improvement both in his speech clarity and a tiny bit of movement in his face!!!!!!
The boys have transitioned into being Big brothers beautifully i am so proud of both of them. They are always making sure she is happy coming to give her kisses! Willem loves that she smiles at him. About a month ago Will caught me off guard and asked me "mom how do you smile" I am guessing it is because of her he asked i don't know that i answered it very well and he has not asked again!!!!!! I am not sure how i will answer that when he asks again, i am a bit scared of that moment. As i am writing that now i realize i need to prepare myself and not hide! I'd love guidance on that i suppose Mike and i need to talk about that!
Ben is enjoying pre-k 4!! He is so excited to be learning his lower case letters. At home we have started working on his sight words and he loves that! Got to love a kid so hungry to be learning!
Helena is a sweet little angel of a girl!!! she was not feeling well last week which was hard not sleeping very well at night but she is getting back to her self... thank goodness!! I am keeping this short as i am exhusted!! good night!
photo from a trip to the city last month!

What a summer...

Where do I begin??

I realize my last entry was in April and I took a couple months off as I was very pregnant and honestly not in the mood to write and THEN i became too busy to write so now in August i shall start up again!

So ~ JULY 1st Helena Frances Smolen Wuebben entered our lives... She was 9lbs. 4oz. and healthy!! Even though we had found out on valentines day that she was a girl I did not believe it until i met her! I was very anxious to see her face and see if she would squish it up as she gave her first cries and she did!!! Next she latched on to nurse with out any problems and i knew then that she would not have to fight as hard as her brother in this big wide world!! I know that she will have her own set of challenges as we all do but not that of Moebius Syndrome! Benjamin and Willem came to visit her hours after she entered this world and it was love at first sight for them as well! My boys totally love her always wanting to give her kisses and Ben can't stand to have her cry for even a moment! Always running to give her her pacifier or announce to me that she is crying ~ even if i am sitting right there beside her.
THEN

JULY 4th my mothers side of the family had our family reunion here in N.J. which had been planned for 2 years. And believe it our not we ventured out to celebrate with the clan. As the main gathering was at my sisters home in southern N.J. i was able to rest in the A.C. same as i would have been if i were at home only there were 45 people i was related to there. Including my grandmother which was great for her to be able to see Helena as a newborn. Some of my mothers siblings had not seen the boys in a while either so i was great for them to see how great Willem and Ben are doing!
THEN

JULY 10th we Celebrated Willem's 3rd birthday!! We had a small gathering with friends and cousins and were all super hero's in super hero capes i had some how found time to make!! Unfortunately Willem fell asleep while we all ate our pizza and we had to wait for him to wake up for cake (I was sad about that~even cried this year i can blame it on hormones but ... he did it last year too. I have a picture of him asleep with a nemo pinata on his lap and i thought i had planned it early enough so it would not happen again! BUT he likes to fall asleep during lunch and he still had a great time when he woke up we were all still here!) Just a bit odd when the guest of honor/host falls asleep at his own party!!
THEN
JULY 11th was the offical last day of Willem's Early Intervention therapys. As he was to turn 3 the next day. So that monday of that week we had our last P.T. session with Sherry who we had seen 2times a week for 2 years and then on wednesday we had our last session with Janine who again we had seen 2times a week for 2 years... They both helped Willem and our entire family in ways i cannot even begin to explain!! Far beyond helping my one year old who could barly sit up on his own to walk. AND with janine he figured out how to suck out of straw and blow bubbles and blew us all away with his speaking and self prompting (closing his lips to make the P,M,and B sound that he can't make on his own). And now as i write this i can't help but think about how much we miss them both!!!
THEN
JULY 11 th was the first day of the Moebius Syndrome Conference here in N.J. and what an amazing, emotional, informative weekend that was!! We met lots of other familes that have young children (and old) with moebius and adults and teens with moebius were so very inspiring to see just how sucessful they were. Of course there were some who were not at peace with them selves but I do hope and pray for them that they can find happiness within them selves. I know it is much easier said than done and i truly don't know how it feels to be in there skin. BUT i do know that true beauty is with in... Saturday evening there was a talent show and i don't know if there was a dry eye in the room! Simply amazing by how full of joy and life these children were!!
I will write more tomorrow to finish up about the conference and even more in july!!

A fun week and yesterdays P.T.

As we recovered from Willem's ear infection and Ben's pneumonia we managed to have a really fun week! On Tuesday we went to the Turtle Back Zoo with our best Buddies!!! It was great fun as all the boys are really into animals! Willem walked around the zoo some on his own which is so wonderful how independent he is becoming! As you can imagine we are quite a site growling at the bears and howling at the wolves!! On friday we went in to the city to go to the American Museum of natural history~ another favorite, with our best buddies and cousins!! Not only do we love animals, those extinct dinosaurs are really a hit with us as well! Both Willem and Benjamin amaze me with there knowledge of the names of the dinosaurs nothing like hearing Willem say Parasaurolophus! Sunday was Michael's 36th birthday and besides animals and dino's the boy's LOVE a birthday!! We had fun as my parents past through town on there way to St. Martin. We sang happy birthday a bunch of times, hey it was a great weekend!!
Then there was yesterdays P.T we had a women from the Coalition for the blind and visually impaired, a mobility specialist! Hoping she could give us some input into Willem's "clumsiness" he wipes out a lot walking around. He is so tentative on the stairs ~ not that he can't do them because he has and does when he wants to! The good news is that she really did not have much to say except how smart and adorable he is! Basically the more mature he becomes the stronger he will become and less clumsy not thinking that his current issue can be blamed on his eyes!! She felt that he is on the right track... So all is good with the Wuebbens!!

what a weekend!!!

It was a pretty crazy one!!! Benjamin had a fever all weekend and yesterday afternoon he started screaming that his chest hurt to much to breath and at 7:30 we were off to the emergency room and at 11p.m. a chest x-ray confirmed that he had pneumonia! So he is on antibiotics and already feeling better this evening. And willem was complaining his ears hurt and today the doctor said he had a double ear infection ~ also on antibiotics! Hopefully it will be the last cold of the season! On saturday as Ben was out on the couch willem and mike were playing outside and he took some really cute pictures of willem with the tulips here are some! I am going to keep this entry short as i am off to my Yoga class which i really need today!