Postponed Update

I've been a little behind on giving an update after Mondays post, I'm sorry about that as I know many of you follow this blog instead of calling for updates. I didn't mean to make you wait but in the spirit of true transparency I needed time for myself to accept Mondays visit before letting everyone in on what's happening. 
On Monday afternoon a very nice nurse came to our apartment from Children's First (a state funded organization which monitors high risk children, http://health.state.ga.us/programs/childrenfirst/).  Paisley went down for a nap about 30 minutes before the nurse arrived but I didn't have to wake her since the nurse just wanted to survey me about different developmental milestones Paisley has reached or not reached.  I guess it was kind of a blessing that Paisley was sleeping because she had a LOT of questions and surveys to fill out. So, she spent about an hour with me asking me all about things Paisley can or can't do to determine if Paisley would be referred to the Babies Can't Wait program.  She explained that Paisley would only be referred if she determined her to be developmentally delayed or if her type of seizures classified her as high risk.  Well, I assumed that her seizures would probably classify her as high risk and I was pretty sure if she was going to be delayed it would probably be extremely minimal and they would just tell me a few ideas to get her/ keep her on track. 
After the nurse completed all of the surveys (she asked me questions in five areas of development using the ASQ surveys) she totaled Paisley's scores.  I asked her if she was going to refer Paisley to Babies Can't Wait based on her type of seizures since she hadn't asked me any real questions about her seizures yet?  She said Paisley would qualify for Babies Can't Wait without considering her seizures.  Obviously I knew at that point that something I said in the surveys made her think my perfect daughter could have some type of delay.  I asked her if according to her surveys Paisley was delayed.  She gave me a very blank look.  I think she could tell she had to choose her words carefully as to not invoke the wrath of a worried mom.  She showed me the scaled they use to judge development.  In the five areas they rank a baby Paisley was in the delayed range in four of the areas and in the borderline range in one of the areas.  My heart sank.  I wanted to run and grab Paisley out of bed to show her that obviously her papers were wrong because Paisley is perfect!  I'm with her everyday and there is nothing 'delayed' about her.  She smiles, she's happy and she is constantly doing something new, she can even tinkle in the potty. 
With no further explanations the nurse got her things together and told me Babies Can't Wait would contact me within two weeks to set up a full assessment of Paisley where they actually see her and don't just ask me questions.  This was a relief because of course I felt like I answered the questions wrong and I had misrepresented my daughter.
Of course I immediately got online to research developmental milestones in babies and I was glad to find that if Paisley is in fact behind she certainly isn't far behind. She's does everything that a 6 month old can and most of the things a 7 month old can. I keep reminding myself that during the month she was having seizures/starting medicines, she slept and ate, that's about it.  She felt too bad to try new things and now that she's feeling better she's ready to go!
For me though, this news has been the hardest for me to hear.  Even if Paisley were to be developmentally delayed it's not that I would love her any less but it's the first time that I feel like she has been really effected by the seizures.  Watching her have seizures has been horrible but knowing that they have caused some damage is even worse.  It's such a helpless feeling to know that I did everything I knew to do and I still couldn't prevent it. 
Now we're waiting for Babies Can't Wait to contact us to get things going.  Just was a side note here,  seriously BCW, two weeks?  That's half a month!  In baby time that's huge!!!!  Didn't anyone ever tell you that babies CAN'T wait?  Oh wait, that's the name of the program so you SHOULD know that. *rant finished.
To not leave things on a down note,  Paisley is doing AMAZING!!!  She's up on her knees and elbows getting ready to try to crawl.  She reaches for things to grab them and can scoot backwards in her walker.  Also, she's in a great mood, smiles all the time and laughs when daddy is really funny.  Also she is now over TWO WEEKS SEIZURE FREE!!!! Praise God!!! Praise God!!!!  Also we're working on four signs this week, Mama, Daddy, Milk and More.  She's going to be signing and ready for Deaf Culture events in no time!