5 months

I know I haven't updated in a while.  It has been difficult with two kids, especially since both have many special needs. 

My baby is now 5 months (can't believe we are almost at half a year old).  Her weight and height have caught up almost to the norm, though she still has a tiny head (common with the genetic syndromes). 

She just learned how to roll from belly to back last weekend.  I was shocked she learned this so quickly since for this whole time she has been a pretty immobile baby when placed anywhere (she still is).  Of course this new found skill has made her naps horrible since she is so used to napping on her belly and now whenever she is on her belly she rolls over and can't get back to her belly.  This then leads her to getting overtired and a long crying spell.  On the days she does stay on her belly though she still naps a ton.  Seriously there were some days last week where she slept at least 18 hours a day.  Not sure if this is a good or bad thing, but totally different than dd1.  At night she has been going 10:30-6 for months.

She also just started to really smile, not just doing the open mouth look that she has been doing for over a month, but now some real grins, and if I am real lucky I might get a few coos too.  Still no laughing though. 

One of my biggest worries right now is with her hearing since she was so delayed in language and social skills.  She doesn't turn her head if I make noise out of her sight, even if it is a very loud noise.  I have an appointment to get her hearing checked, but unfortunately it won't be for another 2 months because the place claims she has to be a certain age first.  Don't understand this, but I guess since she passed her newborn screen they don't care to retest her just yet.

We go next Thursday to see a development pedi.  I am glad we were able to get in so quickly.  I am hoping this new doctor will be able to help us get services and help throughout dd2's childhood years.  Right now she only gets EI once a month and even then her therapist has cancelled and rescheduled more times than not.  Sometimes I think that they don't care since she is a baby and that they are limited in what they can do with her so they give her the short end of the stick. 

DD1 is also getting therapy every week, which is especially needed now since she is out of school for the summer (something I still don't think should have happened giving that I have seen her regress when she was without ST for a month a year ago when she was in EI).  Unfortunately her therapy hasn't been going very well and she has now become terrified when she is there.  I don't know what happened and since dd1 doesn't have the communication skills yet like she should as an almost 3.5 year old she can't tell us what she is so upset about.  It is getting to the point that I may have to make a decision of pulling her out of there, something I don't want to do because then she will get no therapy, but right now it is pretty useless since she is petrified whenever she is there so not getting anything out of the sessions. 

We are also taking dd1 to a neurologist in Boston next week since her SLP thinks she may be having absent seizures.  I don't know whether to believe it or not since everything that is currently happening with her therapy, but since there is a 1/3 chance of seizures with her deletion it is good to get her examined.  DH also had seizures, though him and his mother refuse to blame it on the deletion, claiming it was because of the PDA surgery (ya right, I don't think so.  Just like her doctors told her that dh and his brother's pinkies were curved because her uterus was too small.  Well that was quickly disproven after I gave birth and we saw dd1 in the nicu with her pinkies severely curved).