The latest..........

It has been a bit since I posted - but Endocrinolgy was able to get us in today - so went back to GR.  Really nothing became of today's appt.  We talked about what we already suspected - which is RSS or Russell Silver Syndrome.  The doctor we saw today says she looks and fits the profile of RSS.  Genetics will ultimately be the ones making the final diagnosis.  As far as growth hormone therapy goes - they won't start that until she is 2 - so there was no point in testing her now for it.  Plus alot of RSS kids actually do not lack growth hormone at all - they are just going to be little.  They do however treat the RSS kids with it in hopes that it may make a difference in height....so i guess it would be up to us if we wanted to go that route - it would mean daily shots for many years :(  We still have plenty of time before we have to think about it though.  I guess our main focus now is nutrition and intake.  She does not like to eat!!!  (Also part of the syndrome).  Currently as of last week her surgeries on her intestines and ears have been moved to July 27th:(  So from now until then if she does not pick up on the total intake of calories and food - she will also be getting a feeding tube.  I hate to see that, but really I am exhausted with fighting with her over her bottles.  I think she is exhausted too the poor thing.  So in a way it may eleviate alot of stress on both her and me or anyone who feeds her for that matter.  Still irratated about surgery being moved - because of the hearing.  We were told by the ENT that if the Intestine surgey was going to be awhile they did not want to wait.  But they are waiting - I am confused...... I understand going under sedation is not good - but now she won't have any shot of hearing to the best of her capabilities until she is almost a year old and that is sadening to me.  I called the developmental dr on monday for her opinion - and SURPRISE she has not called me back yet!!  She had no problems calling me right away to say that She may need a G tube for feeding after her last weight check.  Literally within a hour she called me - but when I have concerns or questions - I get nothing!!!!!  I will be calling them again tomorrow and will be complaining to the dumb nurse.  I swear she don't follow thru.  Ok enough ranting - I feel a bit better though :) 

Some good news - we were approved for CSHS or Childrens Special healthcare Services.  What that means is that whatever BCBS does not pick up they will.  The catch right now is only the ears are approved.  Each condition needs to be addressed separately - so the malrotation and MRI stuff was sent this week for review as well. 

Finally - the big one!  Mallorie started rolling continuously last week here and there.  So she would roll to her belly than roll back to her back:)  so she is kinda mobile now - watch out!!  Then this week she is getting  really great at it -she rolled like 8 times in a row the other nite!!!  Still need to strengthen her neck muscles a bit - so PT is still coming out once a week and we work with her a bit everyday!  We need some weight on that body to support her melon! 

Again thanks for everyone's support and prayers - we are not at the end of this journey for answers yet, but we are on our way :)  Night all!

Steph