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!!
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2 comments:
Hi Leslie.
I was so happy to find your blog the other day. I have a son who is 19 months old who has Moebius Syndrome (or a variant of it, the docs can't agree). I have been looking for a blog just like this for a long time to have someone else to share our journey with. I have often thought about starting one of my own but have not gotten around to it. To have support in this manner is so essential. Are you still writing this blog? I noticed you haven't posted an entry since Feb. 9. I really hope you are as I'd like to hear more of your story, a story so much like our own. I look forward to reading more.
Christie
Hello Christie..
I hope you come back to read on as you have inspired me to start up again. Not that i had stopped by any means but the boys had gotten sick then Mike and I had gone on vacation for a week but I am back in the groove of things and look forward to telling more of my story!! AND the whole reason that I started is to get in touch with others in similar situations!! Thanks for commenting ~ Leslie
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