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!

Whats New!

I feel the need to write a bit about what is going on in our daily lives! First i am 7 months pregnant!! We are all really excited around here and we found out on Valentines day that we are having a girl!! As there is no testing that can be done to find out if this next little one will have moebius syndrome, we are just hoping and praying that she will be healthy! At the sonogram we did take notice that she had all of her fingers and toes as that is really the only thing that would set off any signs of Moebius. Not that her having it or not would affect us in anyway!! Benjamin is very excited that a baby sister is on the way and i don't think that willem gets it although he has made the comment that my belly looks like a bubble!! And when we ask him he will tell us that there is a baby in there! She is due July 4th...
We are very much enjoying the arrival of spring here in Nutley!! We planted lots of Tulip bulbs last fall and they are all blooming it is really very beautiful. We also set up the sand box this week and Willem is having such an amazing time!
Today he climbed up a little 4 step ladder to got down a slide and he even figured out how to sit when he got to the top!! A great first! I am so happy he is becoming more and more independent every day as it is just getting harder and harder for me to carry him around and prop him where he wants to be! Benjamin is really enjoying riding his bike we have a park just a block away that he enjoys zooming around!!
Really you would be amazed at how fast he zips around! Yes, he has training wheels that i am in no hurry to take off!
AND that's our present situation!!!

Willem's Hippo Therapy

Willem's third therapy is hippo therapy which he as been doing since he has been a year 1/2. Yes, horse back riding before he could walk. The intention was, is, to strenghten his core muscles so that he can walk!! In the beginning he would cry or fall asleep on the horse but now he really enjoys riding. They have him play simon says while riding as well as face him backwards. It seems to be working BUT again with every thing we have done it is always hard to know how all would be if say we never started this. It does fall under the category of his occupational therapy in general his fine motor skills have been good for some time. BUT larger tasks have always been harder. At 2 3/4 years old he still is unable to figure out how to open a door and has a hard time with toys that have tasks of opening and closing. But is good at stacking blocks,playing at his train table and putting puzzle pieces together!!

Willem riding DUDE earlier this month!

How scared we were ~ random thougths..

The thoughts that go through your head when you are faced with the unknown... When we left the hospital with Willem in July of 2005 all we knew is that the doctors did not know what was wrong with him BUT that there was something wrong!!!
I knew that i loved him!! I never doubted that... I did doubt God a bit and my mom would say that i should believe in him all the more! I questioned everything i have ever done in my life to have a child that was not "right." I cried all the time... in the beginning I know that it was hormones for sure but also a fear of the unknown and all the possibilities that could be "wrong" with him!
I remember crying that we would never be able to go on vacation again ~ or go as a family to Disney World which in hind site is quite funny to me because i am so not a Disney kind of girl... and it was all so unrealistic! ** He is 2 and has been to Florida twice (not Disney, the boys are too young) Illinois twice, Buffalo more times than i can count!! We make trips to New York City he loves the American Museum of Natural History and the Dinosaurs! There is nothing that he cannot do and i know and believe that now but we were so scared in the beginning with the unknown splashed in our faces!! Now just going to the play ground is so wonderful for so long he sat and watched and soon after he scooted around and went were ever I placed him!! AND now to see him be his own person is such a thrill!
I also remember last summer he had turned 2 and after a Yoga class of mine just crying so hard thinking how could i have a child that cannot walk? I have all of this strength and control over my body and he cannot stand up straight long enough to just walk!!!
BUT he has gotten it and I am so proud of him!!
Today we were playing with his cousins Stella and Rocco and Ben was there too and Willem was playing with them but then you'd see him have to stop and watch them run right past, as he is unable to keep up 100 percent. But he so wants to be a part of them... cognitively he is there with them, physically he is getting there and i am just so happy for him!!

Physically and his Physical Therapy.

Here is a bit about the rest of Willem, the part that is not directly affected by his syndrome. Yet is, in the sense that he has been and still is "behind" in his motor skills and strength in general! At 3 weeks old he started his Physical Therapy and has had it ever since. I remember how naive I was in the beginning to the point of telling our therapist "you know i am a dancer and can do all of my splits and hold my leg up to my ear are you sure he isn't just flexible." Mind you he did not bear any weight in his legs until ~ I don't know really consistently past a year! Then she paid Willem a complement and again i remember saying so do you think we are done then with this physical therapy ~ he wasn't even 6 months and really not even sitting up on his own yet. (Ben was crawling at 6months) So naive i was...
For Willem's first year which was with the above therapist we went to a private therapist and she worked on strengthening his muscles. We used the big therapy ball... we played with lots of different toys to get him to push different buttons which in turn were making him stronger!
BUT I never felt a real connection with her and i always thought she thought i was a stupid young mom. Yet i know that i never missed sessions and was into it 110% ~ So i did not like the feeling that she did not like me BUT more importantly I NEVER felt like she cared to know
Willem's syndrome.
So at a year old August 4 I believe was the exact day... we were interviewed to see if Willem was eligible for Early Intervention. (Early Intervention is a state run program for children with special needs that runs until you are 3. The therapists come to your home and do there therapy with you the parent or guardian present so that you can incorporate it into your every day life! Amazingly the Therapists that Willem got are AMAZING!!!! Plus we did not have to drive our 35 minutes each way as we had to, to go to the private therapist. Plus, Ben is home with us. As i had to put him in child care when Willem was in the private therapy!)
He was, and that was an amazing step in Willem's little life!
At the time 1 year old. Willem was sitting up on his own, was using his arms some to push his chest off the ground,and would roll to get where he wanted to go! Physically that was about it!!

Again at such a young age it was the same strengthening and playing with toys obviously what will be of interest to him! BUT it was twice a week for an hour. Most importantly our therapist cared, cares to know as much about Willem and his syndrome as possible! Which i find amazing ~ She has been a P.T for over 25 years and still goes to workshops to see what is new to add to her treatments. In the beginning with our P.T. we worked a lot with Willem to get him to crawl, but one of the hardest things was to get him to get his head up while he was crawling. As well as holding his weight in his arms, he would belly out a lot. On Oct. 13 of 2006 Willem pulled himself up to stand for the first time, it did not become consist for a few months more but there was celebration here when he achieved that. In January of 2007 he started scooting on his butt to get where he wanted something we were initially hoping would not happen because that often delays crawling and walking simply because you don't need to if you can get were you want to scooting on your bum!! He wore holes right through the bottoms of his pants!!! Also in January Willem was fitted for orthotics for his feet. Here they are.

So he would be able to stabilize his ankle and give him the support he needed to be able to stand on his own and walk!! They did help, but No instant miracles! Photo of Willem scooting through the strawberry fields... you can imagine what those pants looked like!!!! 6/2007

With assistance he soon was standing on his legs but was not walking!! It was not until August of 2007 he was 2 years and one month that he stood up off a low couch and took 4 steps to get to his train table. Again it took a couple months to make those steps consistent.

9/2007 walking outside with hand held and needed that hand!!!
There has always been the question in our minds could some of the delay be visual as well. Possibly a depth perception thing?!? His glasses do seem to help. By 2 1/2 January 2008 Willem's main form of locomotion was walking . In the outside world it was a bit harder but with a hand held he was getting where he needed to go. Now in March of 2008 he is doing a pretty good job of getting around even out side. BUT i need to be very close by as he still wipes out ~ thankfully not as often but I would say about a dozen times a day! THEN there are the STAIRS.... To this day he is VERY stubborn on the stairs!! NOW, he can do them but I often say he gets lazy and just waits for me to carry him ~ again we question if it is due in part to his vision?? In the past couple months he has figured out how to crawl up them and with assistance walks up them while holding a railing. Getting down he still needs 100 percent assistance but he is getting there, every day he gets stronger! Just this past week, the last week of March, he has discovered that he can run!!! It is a bit clumsy and not very fast but he is very proud of himself as we are!!!
In short... in the past 2 1/2 years he has come a long way!! It has taken longer than most but he is finding his coordination and strenght slowly but surly and once he has it he can only get stronger.

No Smile...

Willem this past friday!!

The story of Willem's lack of smile is that again he doesn't have the cranial nerve to make his mouth move. So he can't purse his lips together to suck out of a straw. (he compensates with his tongue) For awhile I was distraught with the fact that he would not be able to kiss, really cried about that one BUT (he compensates by closing his lips and making a smacking sound ~ which makes my heart sing) In reality he physically cannot pucker up for those things but he is so amazingly smart at the ripe old age of 2 1/2 that he is finding ways to work around it!!!
Gosh i love this kid!!
Unfortunately the fact is he cannot smile or for that matter frown. He does not have the natural ability to just have his mouth closed so he drools a lot. He has difficulty in the clarity of his speech mainly with words starting with P,M, and B as you need closed lips to make those sounds. With our AMAZING speech therapist we are working on prompts to help him close his lips so he can be understood! He compensates by moving his Jaw so that he can get his lips closed.
I have also been introduced to the fact that he has paresis and not paralysis as he does have minimal movement in his face and he does have feeling. I know i have said dozens of times he cannot smile BUT if you look really closely you can see the slightest movement on the right side of his face when you know that if he could, he would be smiling. He also has feeling on his face we use a vibrating toy as part of his facial work and he will tell me that it tickles and he can feel when he has drool on his chin.
Part of Willem's speech therapy is to do lots for facial massage. In hopes that since he is not able to use his upper lip regularly atrophy will not set in! Let me tell you we both love that, every night I do his tapping (the massage starts with me tapping then stretching and rubbing his sweet little face!)
On the same note as not smiling when he cries his face does not move no scrunching up of the eyes and the forehead..no sour puss of a face. I can recall back in the beginning one of his therapist saying "that is not a real cry... look at his face!! "

I realize that I am completely focusing my writing on Willem but Benjamin has been here for all of this as well!! And I can so clearly hear his little voice as we had a friend over for dinner and yes we were talking about Will and just our lives in general and Ben said "Well you know Willem will never be able to smile, Because God made him special."

Yes my heart skipped a beat at that moment in time!
For now... good night!

Willem's eyes.

Now that i have established that we figured out the mystery of Willem i am a bit stumped as to how i begin all that i want to share with you about this very special little guy. I suppose one step at a time and so here is the story of his eyes!!
When Willem was an infant he gave the impression that he was not focusing on objects! His eyes kind of floated around, not like a lazy eye but also not a steady stare. Plus when he would be in a bright light he would roll his eyes up in his head. One of the things that was part of his diagnosis is that he also has no outward lateral eye movement(almost always present in moebius syndrome). As an infant I remember trying to get him to track a toy with his eyes when he would he would move his entire head to fallow the pattern. Actually I think he still does, i will have to try that tomorrow with him! As he got older and he did appear to be focusing steadier his crossed eye's became more obvious.
I remember being very happy when we realized for sure that he could see... there was not much doubt but with his face not changing expression and his eyes not showing a focus there was a question! I don't remember the "ah ha" moment but I do remember us asking each other "is he seeing us? he has to be right? " And he sure does see, he will now pick up the tiniest crumb and say "here mom"!
As for the rolling of the eyes in the sun as an infant we discovered it was because he could not squint. I would keep his face covered keeping him in the shade or in a covered carriage or with a hat and i tried all sorts of sunglasses ~ he would not keep on the type that wrapped around his head. Since then i have found the greatest sunglasses he wore all last summer and since as even though the weather is freezing here it can still be sunny. The glasses are by JULBO ~ looping sunglasses . What i love about them is that they are symmetrical so he can take them on and off and they are never upside down. They are very dark so they actually work. He can't pinch his fingers in them because they don't close. They are almost undestroyable as Willem has pulled at them many a time. BUT i did step on them once, that did cause the lenses to pop out BUT i actually was able to push it back in. I did buy a new pair at that time for back up though because we really can't be without them. When we are out everyone calls him a rock star so yes they are even cool looking!!
We have seen a few different eye doctors which all gave us different plans of treatment. But they all agreed that his eyes were not being scratched from his inability to squint, or do a complete blink. I believe that is because as i mentioned earlier he does sleep with his eyes closed and he does produce tears. As he has gotten older there have been times when he says his eyes hurt and i do give him moisture drops. As well as when the heat is on high or the air conditioning i do put Lacrilube(eye ointment) in his eyes at night just to be sure he is comfortable as he doesn't really fight it, I think that it is helpful!
As for his strabismus (crossed eyes) there were doctors that told us to wait until he is 8 years old and then the Dr. we went with was concerned with amblyopia setting in when one of his eyes would stop seeing if it was not being used. So we started patching his eyes for a while one at a time so that the unpatched would get stronger he was not crazy about keeping it on. We would have good and bad days, in the end on April 18th of 2007 (21 months old) Willem had the strabismus surgery to straighten his eyes. After the surgery the doctor said it was tighter in there than he had anticipated but that all went well. After the surgery about a month or so Willem would say his eye hurt and cover it. Upon seeing the Dr. we discovered it was not a physical pain but one of discomfort as to how his eyes were focusing. So he prescribed the patching again which we did and he loved having it on.(my Que that it was working!) After a few months of that we weened him of the time he was patched. The crossed eyes still being present not as bad but enough for concern in Oct. of 2007 the Dr. speaks to us of needing to go in for more surgery. I ask about glasses, he saying 2 year olds generally don't keep them on for this but we tried and he keeps them on! They are prism glasses so they are not correcting his vision but giving the illusion of how things are placed in space by how the light hits them. Again they are not correcting the strabismus but they are keeping his eyes working together! Unfortunately in January of 2008 even with him keeping the glasses on he wants to try to straighten them further I think maybe we should get a second opinion, if he doesn't have the cranial nerve there working will the surgery ever work????
That is the story of Willem's eyes up to date. They are also a wonderful hazel color like his dads and even though he cannot smile people say " oh i can see he is happy in his eyes!!" And now that he is older it is also in his great laughter which I must say in contagious!!

it has been too long... more of willems story!

WILLEM AT SIX MONTHS OLD

Sorry it has taken so long to add more to our story... BUT i am back!!!
SO... We did find a great neurologist at Columbia University in N.Y.C who we saw when Willem was almost 5 months old and what a great find that was!!!
I told her our story as listed in the earlier entries and that Will was on the phenobarbital and that we thought it may be Moebius Syndrome and she gave Willem a good looking over then excused herself for a few moments and came back with a text book open to Moebius Syndrome! And we looked at the photos and saw how similar Willem looked to the other baby's not only his facial expression but what I call his "loosey goosey" ness!!!! That his muscles tone was so poor, that this legs just flopped opened, wasn't putting any weight in his legs, wasn't pushing up at all during tummy time just did not have the strength. SO, we left with a clinical diagnosis of Moebius Syndrome and a prescription to have another MRI and a in hospital EEG performed. Since Moebius is so rare there is not a blood test you can do or really any test to get a definite diagnosis so that is why his is only clinical!
In the next month we did the MRI which did not show much in the way of the cranial nerves ~ don't quote me but i am under the impression that it is almost impossible to see the cranial nerves even if he wasn't such a little guy. What they did see is that his brain looked normal and intact! Then we went for the EEG which we were scheduled to be monitored for 24 hours but nothing happened in the first 24 hours so we stayed on for another 24 at which point we were given the o.k. that he was not having any seizure-like activity and that we could begin to ween him off the Drugs!!!!! YEAH!!
MYSTERY SOLVED!!!!!!

So by 6 months we with our doctors decided that indeed what Willem has is Moebius Syndrome. He is very blessed how uninvolved his case is as he has all his fingers and toes which are sometimes missing in other people with this syndrome. And far more important than that is that he did figure out how to nurse even without the shield! And at about nine months was handling solid baby foods (applesauce, rice cereal, pureed foods) with out any big problems! Yes, there were the small ones with him pushing the food out. It was more to do with the fact that his tongue was not yet trained to eat but with some help from our speech therapist he really progressed very quickly!! And the challenge of getting him to drink out of a sippy cup when he was ready for water and juice around the same time. We found that the Nubby brand "bottle like" cups worked for him and later the Playtex sippy cup with the soft spout worked. As he cannot close his lips without "outside help" he uses his tongue to do the sucking. Another part of our therapy was to get Willem to drink out of straw for both practical and therapeutic reasons and on May 4th of 2007 (21 1/2 months old) he did on his own drink 3.1 oz. of a drinkable yogurt!! (You would think he had won the N.Y.C. marathon with the excitement with which i called all of our family) Since then and in time he now also uses a straw sippy cup!!! Yet to this day if he is too tired he will say i can't do it and start crying. It is easiest with a short straw so I cut the bottoms off his straws when not in a sippy cup.
Plus, he sleeps with his eyes closed!!! I will talk about his eyes in my next entry... hopefully i will get to it this weekend as i am back on track! Thanks for listening... Leslie

picking up speed...

Well, I have not written in a week as we have been hit with a crazy flu here! The boys and i had~have it the worst and mike even got a version of it! I am hoping that we wake up tomorrow with out a fever we shall see!!! As i have laid around the house all week... NO exaggeration! I decided that i want to pick this up a notch. I don't want to leave things out i just want to get places sooner! I am going to start summarizing Willem's story to get us to here and NOW. Maybe not in today's entry but soon!
SO our first neurologist sent us for the EEG it was a simple one or two hour test and from that test she decided to have us a do a 24 hour at home EEG. Reasons for it his lazy not wanting to focus eyes, he also loved arching his back when he was laying on the floor so the top of his head was on the floor rather than the back of his head. I would notice if it was too sunny in the room he would roll his eyes in his head. Wondering if all of these odd things could have been seizure activity. So Sept. 28th of 2005 I brought this little guy home with his head all wired and i think i may have pressed the button twice. I was so nervous...
Meanwhile... my amazing mother in law was searching the internet for answers and called me with her finding. She found a rare condition were the cranial nerves are not working or there and maybe that is why he is not sucking, nor is his face moving at all when he cries!!! She told me it was called moebius syndrome i wrote down the name and brought the info to our follow up appointment which was the beginning of Oct. Again we went ready for answers and she said she did not like that she saw some abnormal movement in the EEG and when ever anything stands out she likes to put them on a dosage of Phenobarbital. In case he is having seizures... how long would he be on it was my next question and she said until he his TWO. O.K. we are going to now wait and see. (did not like that answer or the one of giving my baby who has only had breast milk a drug!!) So i took out my piece of paper with the 2 words moebius syndrome and she said no she did not think that was his diagnosis!!! We left still with no answers and a prescription. AND SAD!!!
Mean while he was doing his weekly physical therapy and around this time we discontinued the speech because at his young age she felt we should wait until he was ready to start solid foods and talking! PLUS i had just gotten to nurse using this crazy nipple shield that helped him latch on. We had not given up!!! and he had conquered!!! AND I went in search for a different neurologist for a second opinion! good night for now!!

Second entry.... pick up at Willems arrival...

Hello... i am going to pick up were i left off... hopefully i will get to the present sooner than later! So, we brought home this little guy who wasn't sucking and just seemed so fragile. We went to our wonderful pediatrician. Willem was 5 days old and she kept to her story she new something was wrong but could not put her finger on it. So she sent us home with a list of Neurologists to call and make an appointment. I got what i found to be ridiculous replies like we can see him in 2 months... i wanted to see some one that DAY... moment.... Finally i got the answer i wanted they would see him in a week and 2 days. I could deal with that!!
I was so excited to see the Dr. (too excited...) she looked Willem over noticed his Hypotonia (super loose muscle tone!) Took notice of our Pediatricians concerns.... BUT she did not have an answer for it either!! Looked at the MRI from birth but did not notice anything out of the ordinary either! She wanted us to start physical and speech therapy for his low muscle and lack of sucking and scheduled an EEG. So we left with NO answers... *I don't think that i mentioned yet how i had been crying for these two weeks trying to figure out what i did wrong to have a baby that "just was not right." I would go on about how i am Super healthy, my favorite foods are fruits and vegetables (and chocolate too!!) I never drank much still don't maybe a glass of wine out but oh so rare.(never during pregnancy!) Never smoked anything legal or illegal for that matter! Then i would add i even go to church on Sunday!!!! I pulled at all my pluses! *
Back to the bad Dr. day one good thing, great thing happened that day. I went to make the appointment with the Speech therapist and the therapist was not busy and said she would like to see us right then and there. (she was nervous he was maybe not eating enough was the vibe i got as to why she wanted to see us right away! - but he was) So after questioning and evaluating Willem she gave us two projects. One was to hold a pacifier in his mouth when ever we could, squeeze his cheeks and hold it in with your own finger. Second, after looking at his mouth not seeing anything structurally wrong she said to wean him off the haberman feeder. Again squeeze his cheeks to get him to close his lips around a regular bottle and don't give him a crutch, "he can do it"! Something positive said about my Willem, "he can do it"!! O.k. that gave me new faith and hope even thought the Dr. didn't so we followed her advice. *Plus - I had not given up on breast feeding him either. I was pumping milk knowing and hoping that he would figure it out and if he didn't i would just pump for the year and give it to him in the bottle knowing i wanted the best for my boy.
Ending here for today. I added pictures from August 2005 Yes Benjamin was in a cast ~ Willem with the pacifier.

my first entry...

I have decided to start a blog because i want to share my story about my son Willem and him being born with a rare neurological disorder of the 6th and 7th cranial nerves called Moebius Syndrome. I think that i also want it to be more than that because we are so much more than the syndrome. So here is a bit of our story, which begins with myself and Mike my husband. We will be celebrating our 10th wedding anniversary this August 8th which is very exciting and we are a very happy couple (most of the time) not too many complaints. We met in New York City and lived there for just about 10 years and in that time we had our first child Benjamin. He was born in the city on Oct. 23rd 2003 and he lit up our world. I remember when he was born i was fascinated by how perfect his ears were!! Yes, odd but true i couldn't believe something so perfect had just come out of me! He was a bit Jaundice at birth and i thought it was the end of the world that they had to put him under the special lights -so niave. We came home and never gave the jaundice another thought as we did not have to he was fine! Then when Ben was a year old we found a new home for ourselves in Nutley N.J. and left the city. Mike still works in N.Y.C, I thought that I would still dance in the city some but then i found out we were pregnant again. Pretty much the day we moved, i found out and i was very surprised as Ben was so young but i was... The next 9 months went rather smoothly. Until 4 days before i was to give birth. Ben was home with mike, i was at the Midwives for a check up and Ben was showing mike how he could stand on a basketball and he fell and broke his leg!!
Again, i thought it was the end of the world. Mike and I were probably more scared than Ben. They put him in a full leg cast and i thought he would never walk again (hormones). (He was walking fine 6 days later.) Then July 11th 2005 came and i was having very intense contractions and i new it was time to have our second child and we did. At 11:40 a.m. our second son came into the world. When i got to the hospital they were checking my progress and they had to get the ultrasound out because they thought he may be breach but he wasn't, maybe it was his face cheek that they were feeling? But he was out in a couple of pushes and again our world had just become more complete. Another little guy to add to our family Willem was here!! My parents brought Ben to come and see him and we were so happy. BUT... I couldn't get him to nurse. And i having nursed Ben for his first year of life could not figure out what i could possibly be doing wrong. It had not been a whole year since i had stopped with Ben. Then the nurses started coming in he had to eat... giving me their "tricks" that always work... nope! Hours had gone by about 10 I was still trying finally i nurse said pump some of your milk and we will give it to him in a bottle, i did he would not drink it out of the bottle. WEIRD so she brought out a syringe and he drank the milk, it went down. The next day was the same he would not nurse or take a bottle so the lactation nurse came and tried to help -nothing- so she brought in a crazy looking bottle called the Haberman feeder and he drank out of it!!! Finally success. But he did not have a cleft pallet which is the common use for the haberman but it worked so we went with it! Then our Pediatrician came in and had a talk with Mike and i. She had looked Willem over in the nursery and she had some concerns. Red flag... Tears started flowing before she said a word.(they are starting now too!!) She did not like that he was not sucking out of a bottle or nursing... she did not like his cry, or his sneeze, and he was very loose. Yes, he was a newborn but extra floppy! She requested we do an MRI of his brain to see if anything was going on in there. They did it but nothing looked out of the ordinary on this 2 day old baby so she sent us home with a breast pump and funny looking bottle and a baby that she felt was just not right - But did not know much more than that........ I am going to sign off and write more later as i am tired and have miles more i want to share about my amazing family!!!