Saturday, October 4, 2014

Busy busy busy

Thanks to everyone who dropped a line and asked how Princess Bear (PB) and I are doing.  I know I fell off the face of the earth for awhile.  I didn't even to my Farm Kings recaps.  Gasp!  It's just been crazy here for many reasons and I think that this was something I needed a break from.  I'm still going round and round with PB's teacher.  Actually today the woman completely lost her $hit.  We have a new IEP in the next 3 weeks.  She's still not getting the information I need to help PB to me and she's not making the appropriate accommodations.  I'm done.  I've also gotten the information on how to file a formal complaint.  She is not going to waste another year of my child's life due to complete laziness on her part. 

Last week my mom & I drove PB to her yearly appointment at Shriners hospital.  Usually her appointments are 1 long, very long day.  So we get up and leave Peoria around 3:30 so we're there to start the day at 8am.  Every couple of years though they do some more extensive testing so our stay is 2 days worth of Dr's appointments.  That's what we had this year.  We decided that in for a dime in for a dollar since we'd be staying in a hotel for 1 night how much more would it be to stay 2 nights.  So we drove up Tuesday night.  Oh that brings up the small fact that my folks decided to buy a new car a few weeks ago.  They've also decided that this is most likely the last car that they will purchase.  My mom keeps on reminding us that her parents both died at 72 years old and she's going to be 67 in December.  A bit morbid.  Back to the car.  My dad completely fell in love with the Nissan Murano.  They decided to go top of the line.  Something I've never seen them do with a car before.  Usually it's just the basics please.  Not this time.  I swear that we could probably live in this thing.  PB is enthralled with the seat warmers in the back seat and the fact that the back seat can recline a lot.  Enough for her to have a comfy little nap.  My brother in law & I are both in love with the Bose sound system.  We made my mom very crazy by listening to lots of Florida Georgia line and Luke Bryan.  It is a sweet car.  My dad is crazy about it and very very protective.  That said I was a bit worried about driving it in Chicago.  I'm one of those people that doesn't actually mind driving in the city.  I don't love it but I don't mind it.  My mom on the other hand straight up refuses to drive in the city.  Considering she grew up there and I didn't I find that curious.  I'm a pretty defense and aggressive driver and that works well for driving in the city.  Only problem is I was terrified of hurting my dad's baby.  PB told him that the car had smashed bugs all over it from the trip and it wanted us to go out and immediately get it washed.  Um...no!  Long trip and even longer day tomorrow and the day after.  Bug gets will come off later!  The good news is that nothing happened to the car.  Yah!  The Dr's appointments at Shriners went fairly well.  PB's plastic surgeon decided that he is not going to do surgery to bring PB's eye orbits closer together.  This is the second year he said that and we're treating it like gospel at this point.  He said that the risks are just too big in light of what the gains would be.  He did say that when PB is done growing that he is going to do some work on her nose.  She basically has no bridge to her nose.  Makes wearing glasses slightly difficult.  Since that isn't a "major" surgery I can get on board with that one rather easily without a sense of dread.  The orthodontist did say it's time to get braces on.  PB is actually excited about this.  Finding an orthodontist to work with her that has a history of working with kids with craniofacial anomalies is proving a bit difficult.  I'm still waiting for the complete report from Shriners but overall things went well. 

I thought that I was going to be released from OT for my hand.  I'm still having some discomfort but the OT taught me several exercises to help alleviate the pain.  My mom is also an Occupational therapy assistant so the OT felt pretty comfortable releasing me since I could always have my mom help.  There was just one small problem.  Ever since I got out of the cast I've had some numbness in my hand.  Considering my issues with carpel and cubital tunnel syndrome in both arms OT thought that he could help with all of those symptoms.  It has been a pretty rough road and of course life had to throw in a few complications along the way.  The general OT exercises were somewhat painful but such is life.  Then a week ago I somehow did something to injure my triceps tendon.  To the point that my arm swelled big time.  I'm so talented with $hit like this!  (for those who wonder why I'm joking about this it's simply because if I don't joke I'd be crying!).  So that has hampered things around here. 

PB is keeping me very busy chauffeuring her to Dr's appointments.  We go back to Chicago to Lurie Childrens hospital this coming week.  The week after that we go to Childrens Hospital in St. Louis.  I'm just glad we're getting these appointments in before the snow flies! 

So, in between not being able to type well because it just flat out hurts, PB having tons of Dr's appointments and me just needed to step back for a bit the blog took a vacation.  Hopefully things calm down here and I just get to concentrate on getting ready for our Disney vacation!  Crossing my fingers and saying a little prayer.

No comments: