10 days down

It's been a while since I've made a post so I have a lot of updates...
First, just in case you don't make it to the end of the post,  I am asking everyone who prays to set a reminder on your phone for Wednesday, Sept 15 at 10am.  Paisley has a doctors appointment at that time and we get all of her tests results.  I am a little bit stressed about the results and I know I'll be praying at that time and I'm asking that you all join me in prayer.  We are praying that they won't be able to find anything in her tests because that would mean she has the best long term prognosis. Thank you all of joining me in prayer!
Okay, now onto the updates!  Paisley has been on ACTH for 10 days now and she not had a seizure since Sept 8th at 8:45pm. That's 5 days without a seizure!!!!  During the first week on Paisley's treatment she had 2 shots each day of .37ml of the ACTH. Last saturday she had her first day of only one shot each day also of .37ml.  This coming Saturday will be her first day since the start of treatment without any shots because is is reduce to having a shot only every other day.  She'll continue having a shot every other day for the remainder of the treatment, 12 weeks total, but the amount of the dose will be reduced every two weeks.  So, Paisley's last injection will be the day after Thanksgiving.
Paisley seems to be tolerating the injections pretty well.  Unfortunately she is a very smart girl and knows when she's going to get an injection and starts to push me and Gerry away.  It's tough giving her the injection but I just keep reminding myself that it's the best thing for her and it's only 12 weeks.
While she's not having any major reactions to the medicine she is having some side effects. 
The doctors and nurses warned us that she might be a little grumpy while she's on the ACTH but that is the biggest understatement I have heard recently.  She is pretty much constantly fussing.  It's very hard for me to hear her fuss all day and not be able to do anything for her when she was such a happy baby just a few weeks ago.  Right now she's either eating, sleeping or fussing.  I know it will pass but I could really go for a laugh, smile or even a coo these days.  Just some advice to any parents who may have a child also on ACTH do whatever you can to relax while your baby sleeps it will help the fussing be less overwhelming.
Paisley's appetite has increased a lot from the ACTH as well.  Yesterday I started supplementing with formula because Paisley has eaten the 100+ ounces of supplemental breastmilk I had saved up in our freezer. She was weighed today and has put on 2 lbs in the last 10 days. She's getting some pretty adorable chubby cheeks though!  Luckily she is taking the formula pretty well.  She's on soy formula since she's allergic to all dairy and I was nervous the taste might put her off.
Last side effect and another request for prayer, Paisley's having some blood pressure issues.  It's a little high but hopefully it won't be a problem. They check it every week right now to make sure it doesn't get too high.
Okay, now for the GOOD NEWS!!!!  Paisley sat up all by herself this week!  Okay, so normally a 7 month old sitting up for the first time may not be too amazing, but for Paisley it means that she's still progressing.  A common result of infantile spasms is developmental delay.  Paisley sitting up means that she is still developing right on track which is a HUGE relief and answer to prayer.
Okay, I think that's all of now...  If you have any questions about Paisley's treatment or her status please email me or comment on this post.  I'll be sure to post after her appointment with the neurologist on Wednesday.
Thanks again for all of your prayers and please remember to pray with me on Wednesday at 10am!