My busy little bee!

Paisley is 10 months old today and in the past 10 months she has been through a lot.  I regularly thank God that we are going to be finished with this terrifying experience before Paisley will remember anything.  I pray regularly that this will be the last time Paisley will have to face anything like this.

Well, the ACTH is finished.  Last Friday, the day after Thanksgiving,  Paisley received her last injection of ACTH.  She has been such a brave little girl through this process and has amazed the doctors at how well she has reacted.  She had over 60 injections that Gerry and I gave her during the 12 week period.  During the first few weeks of the injections her mood was turbulent and her personality was only seen occassionally, but as the dose has been reduced she has gotten to herself.  Now that we are 4 days post ACTH, she is doing amazing!  She's crawling, babbling and even pulled up in her crib today. 
While Paisley has been on ACTH her blood pressure has been monitored on a weekly basis.  That means, once a week Paisley and I head to her pediatrician for a quick bp check. ( I must say at this point,  if anyone is in our area and looking for a pediatrician ours is great!  )  Paisley's bp has flirted with being high the entire time she's been on the ACTH.  With babies her age they really only focus on the systolic pressure which has regularly been over 100.  Her goal systolic is around 88-90.  Last week Paisley had her first consisten bp under 100.  She was at 96 last week and this week she was at 94!!!!  We'll go for one more bp check next week just to be sure it goes back to normal.

Babies Can't Wait has been to work with Paisley three times now.  Now that all of the paperwork is done things seem to be Rockin' and Rollin'. Every week the physical therapist works with Paisley and she does amazing.  After Paisley's first appointment the pt wanted Paisley to be able to sit up on her own, she was by the second appointment.  At the second appointment she wanted Paisley to start trying to crawl and by the third appointment she was.  At the third appointment the pt wanted Paisley to start pulling up and guess what, she pulled up today.  Looks like the pt is going to be amazed in the morning. :)

Paisley went for her EEG yesterday.  Hopefully it will be her last EEG.  I was a little surprised at the place we went to do the EEG.  This EEG was done in the neurologist's office instead of the hospital.  Being a practice of only pediatric neurologists I would have expected the procedure rooms to be a little more...'baby friendly'.  After they got Paisley all wired the tech turned off the lights and asked me if I thought I could get her to sleep.  The room was dark yes, but there was a lot of interested medical equipment and a procedure table...  How in the world was I to go about getting a 10 months old to sleep?  The tech told me I could sit on the table and hold Paisley.  I really think that rocking chairs might be a good investment for this practice.  Any way, other than my complaints,  Paisley did fantastic!  She really wanted to be able to touch the wires and didn't like being held down while they were put on and taken off, but she managed to persevere with only a tiny bit of fussing.  I was so proud.
We won't get the results of the EEG for a few more days.  Please keep Paisley in your prayers as we wait, we're not out of the woods yet. 

Thank you all for all of your prayers!!!  Your prayers are being answered.  Just 12 weeks ago Paisley's prognosis was quite grave and so far she has beaten all odds.  I remember the when the doctor came to the hospital room to tell us what was going on with Paisley.  He kept watching me as if he were expecting me to totally lose it while he told us that our baby would probably have so many problems.  I wish he could see my girl now!  Praise God!!!