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Hi, I am new to this board. I typically post on thebump.com special needs board or the delayed darlings board on babycenter.com. I have a 9 month old son who is delayed in all areas. When he hadn't smiled at 3 months old our pedi sent us for an MRI of his brain. The MRI showed that he has delayed mylenation and a small ponto cerebellum (pons). We had a second MRI in the beginning of may and thankfully it showed improvement in both areas. He also has microcephaly (40 cent. as of yesterday) and has some increased movement. DS has also made good progress with early intervention. Right now we are waiting for genetic testing to come back.

We see so many specialists and therapists that we carry a binder that weighs almost 5lbs. Yesterday we added a homeopathic doctor to our "team".

This rollercoaster ride has been so hard on me. Some days are better than others but there is still the genetic testing looming over our heads. I find it really hard to just enjoy the moment because I am constantly worried about the future and about the "what ifs".

There is nothing genetically wrong on either my side or my husbands side of the families so we are hoping it is nothing genetic. I did have a flu and H1N1 vaccine when I was at most 6 weeks pregnant (I had never gotten a flu shot before then). My gut tells me that those vaccines played a roll in this.

I loved mothering magazine (I miss my subscription). I can't wait to get to know all of you.

PS....I live in Maryland (30 minutes north of Baltimore) if there are any other MD mommies here :)

Lesley
 

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Hi, welcome to MDC. The parents here are very helpful and supportive.

I have an almost 2 year old DD who had a stroke in delivery. I totally get the whole heavy binder and teams of specialists. Have you done any Feldenkrais or Anat Baniel Method Therapy? This is the thing we do that I found most helpful in the beginning. We also belong to www.nacd.org and I feel really empowered by their program and their view on the unlimited potential of my daughter.

I want to say don't worry about the genetic testing, but I am sure it is worrisome no matter what I say. We had genetic testing in the NICU and it did turn something up. My DD has a deletion on one of her chromosomes. Neither my husband nor I have any issues, nor our older son. I think in 80% of the cases the mutations are de novo. Even if something is turned up, it does not dictate your son't life, only possible challenges. There is usually a pretty wide range.

Best of luck in your discovery process.
 
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