Finally!!!

On Wednesday, Babies Can't Wait finally came to evaluate Paisley.  Seven weeks after the original call was made to refer Paisley they finally made there way to us.  Of course, this was just the evaluation and no programs have been started yet but at least we're getting somewhere.  I just praise God that Paisley isn't having any serious developmental problems that have been put off.
Now onto the BCW update. The two evaluators arrived at 8am to start evaluating Paisley.  There was a physical therapist and an occupational therapist.  The physical therapist spent time playing with Paisley getting her to roll over, sit up and other gross motor skills.  The occupational therapist used blocks and noise making toys to see Paisley's reaction. After spending about an hour with her they gave me their update.  As expected, there are a few things that Paisley is not doing that are at her age level but the therapists did say  there were areas what she was right on track.  The basic idea though is that she is eligible for services from BCW and they are suppose to come meet with me again next week to discuss exactly what services she will be receiving. I'm hoping that it won't take as long to get the therapy set up as it did to get the evaluation set up. :)
Extremely Good news,  Paisley is half way through her injection series AND is STILL seizure free!!!  That makes 6 weeks without a seizure! 
At this point in the injection series I think Paisley may be having more of an effect from the medicine than she was in the beginning.  She's definitely fussier on shot days and I'm not able to get much done on those days because she wants to constantly be held. Other than the fussiness though, she's doing amazing with the shots.

Doing Great!!!

Paisley is doing so well now!  She's been on the ACTH for just over a month and she is seizure free for OVER 4 WEEKS!!!!  We couldn't be happier.  We are still waiting for Babies Can't Wait to come do their evaluation of her but I think she's starting to catch up on everything by herself.  She can sit for extended periods, rolls all over the place and is getting up on her knees and elbows!  Thank you all so much for all of your prayers.  We don't know for sure yet if the hypsarrhythmia has stopped but atleast the seizures are under control.  We won't have another EEG until the beginning of December to find out just how effective the ACTH has been.
Paisley did have an unrelated trip to the doctor this week.  I noticed her tugging on her ear on Monday so Tuesday morning we headed in the see the pediatrician.  Luckily it wasn't an ear infection but she did have a foreign body in her ear.  I can't believe at 8 months old she's already putting things in her ears!  The doctor was able to flush it out though and Paisley is fine.
Next week, Oct. 11-17, is Infantile Spasm Awareness Week.  http://www.infantilespasmsinfo.org/About-Infantile-Spasms.php  This is a great website that tells about what exactly infantile spasms are and it has a video showing what the spasms look like.  I think it's very important to get information out there because this is such a rare disease it often goes undiagnosed for an extended period.