I don't know if you got my previous reply, but I will send another one.  My son was given a firm diagnosis of weaver syndrome last month after about 6 months of testing and wondering.  He was born at 37 weeks weighing 9lbs, 5 oz.  He was born in respiratory distress and transfered to the NICU for 2 weeks.  He came home with a clean bill of health and then at about 6 months, I noticed he was slow to reach his milestones.  We took him to a develpomental pediatrician and she ordered bloodwork that came back with some unusual findings.  She passed us on to a geneticist who started the ball rolling with Weaver syndrome.  His bone age is that of a 3 1/2 yr old.  He is 15 months.  He has some of the facial features to go with it.  He is a big boy.  I went through a lot of different stages in this whole thing.  Disbelief, guilt depression.  and you go through them over and over again. You think you have a handle on it, and then something happens and you start the whole cycle over again.  It is a VERY rare syndrome, so nobody will know what to say to you or how to react.  It can be lonely and isolating.  You worry all the time and it will always be in the back of your mind.  So, that is all the bad stuff.  The good news is, she will make progress.  The first time she rolls over you will shout for joy.  Sitting up will make you feel like a million dollars.  She will work hard because that is what babies do.  They want to explore and learn and move and the things that hold them back will only make them stronger.  You will have such pride in your little girl.  and people will stay some really stupid things, but that just shows their ignorance.  Be proud of your girl and don't be afraid to talk about it.  get involved in early intervention through the school system as soon as possible.  my son started in PT at 6 month and EI at 7 months.  He was not rolling, sitting or crawling at 8 months, yet we got him there by nine months.  Give your little girl the opportunity to work hard.  be an advocate for her.  If you think something is going on with her find someone who will listen.  let me know if I can answer any questions.  I would love to know more about her.  My email address is sammarysara@....  Email me any time.

 

Mary

jesstim3223 <jesstim3223@...> wrote: