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!!!