Wednesday, March 12, 2014

A WOW day!

Where to start...
We were supposed to have Abby's school IEP meeting, but after a call from the special education director in our county it was put off.  He said he was looking at their proposal and realized it wouldn't have been fair to ambush us at the meeting... thankful for that... been there, done that.  Bottom line is they can't handle her at the school she's at.  I'm not super surprised as I've had to pick her up early more days than not, but the last few days have seemed better.  I should've known something was up when the mood changed instantly at the school from crazy to calm...  They knew she was leaving.  The weird thing is they didn't tell her shadow.  They were going to propose a plan for her at the high school in the PMD (profound mentally delayed) room.  We were disappointed because she seemed to be happy at the place she was at.  Her shadow seemed good, but the classroom teacher seemed to be struggling with all her needs.  In defense of the teacher, she does have too many kids and she has two rooms with fewer aides.  I thought she'd come around as Abby adjusted, but truth is Abby is still lower mentally than the rest of the kids.  I'm not naive.  I get it.  Abby's a lot sometimes, but moving her isn't so great either.  So before we fought it too much we thought it only fair to visit the high school. We went out there today, and truthfully it may be a better fit.  It's set up more like a Kindergarten class with activity boxes, music and circle time.  They have regular ed students who come into the room to help throughout the day as well.  It's a much bigger room and only four kids with a teacher and two aides.  Abby and another boy also have shadows, so that will make it five kids and five adults.  Her shadow, who we like, will be able to go with her as well :)  I'm frustrated overall with all the changes, but it may end up better in the end.

I opened mail last night and found new medical cards.  This might not seem like a big deal to you, but it's huge for Abby and Millie!  I was told this process could take months!  It is secondary insurance since we have private insurance, but it will pick up the copays and stuff that our insurance doesn't cover.  Our 20-30% portion adds up quickly when there are two kids with a lot of appointments and meds that add up.   I applied for it when we arrived, but I was told a week ago that what I filled out was only a small portion of what I needed to do.  I finally figured out what else I needed and set to finding records for both Abby and Millie.  I have over 100 pages ready and am waiting on a few more doctor's things before I can submit it, and the cards magically appeared.  Apparently, there are more ways to qualify for what we needed.  I actually thought they made a mistake and called about it.  Truth is there is a small window of discretion the worker has and she used it in our favor.  I'll still need to get all the paperwork together as our eligibility will probably run out soon, but at this moment all the stars aligned in our favor... God!  This will allow us to get the ball rolling to get PCA services, diapers and on the decade long waiting list for a waiver.  It buys me time to gather to get what I need for the girls.  All I can say is Praise The Lord!  The timing in this arrival is amazing as Abby's case worker came for the first time... today.  She was able to start all those applications for waivers and PCA stuff.  

As if this roller ride of emotions wasn't enough, I planned to stop at the consignment shop today to look at some stuff for Millie after we visited the school, but we ran out of time and had to get home to pick up Abby from school.  While I met with the case worker UPS arrived with a package... I didn't order!  Someone sent us a baby saucer!  Thank you to whoever sent it!  I was sitting here with the case worker talking about Abby (emotionally draining) when the doorbell rang with a gift.  I cried :)  I told them about all the love and support we've had from everyone and... there were tears :)

I've been sick for over a week now.  I was in denial last week, but this week it's knocked me out!  I've been a bit discouraged as connecting with friends here has also been challenging because I hooked up with the ones who home school &/or have kids with special needs... perfect... in theory.  If it's not challenging enough to connect with me in my mess, try adding friends who live similar lives... it will take an act of God!  Thankfully, Abby's new pca likes to visit :) Did I tell you she is from MN originally?  She lived in the Twin cities area until she was five.  She still has relatives there and goes to visit. 

Tomorrow we go to Charleston to MUSC (Medical University of South Carolina) to see the neuro surgeon for the first time and do another ultrasound on baby Millie.  I'm excited to get her looked at again, but still a bit nervous about it all. 



she scooted herself up and I found her with her teddy kissing her head!!!

surprise present!

Fancy Nancy seems to be more herself :)

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