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!!!