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