Wednesday, October 19, 2011

IEP time again



I am not exactly sure why I've been struggling so much posting this year during 31 for 21.  Riley typically gives me plenty of stories to share.  This year we seem to be pushing the limits of what we can keep up with as a family.  I think we all have those moments in life where we push a bit too hard and one of the dozens of balls that are up in the air fall.  I feel like its better that the blog challenge is the one to drop instead of forgetting one of the kids at school or something exciting like that. 

We had Riley's IEP meeting meeting last week.  I love his teacher but it is always seems a bit overwhelming to have to digest all the goals and plans for the next year.  This IEP will stretch over the beginning of kindergarten so it included what we are estimating his needs to be during that transition as well.  We will revisit in the spring when we start the transition planning but still a bit unbelievable that he will be headed to kindergarten next fall.  We have some big decisions to make about his placement in kindergarten.  If he stays in the public school he appears to be headed to the integrated kindergarten at our neighborhood school.  That room has 18 kids with 6 of them on IEP's.  We are still highly considering sending him to the Catholic school that Rex attends in our neighborhood.  Glad I don't have to decide today!

Riley's teacher is really stressing writing with him this year.  She started to write one goal to state that he would be able to write all of the upper and lower case letters.  Her supervisor made her rewrite it since that was a grade level.  Apparently he can't have goals that would be considered at grade level.   So the technical goal was rewritten to state that he would be able to write the letters of his first and last name in uppercase and lowercase letters.  He will work on all letters and she will record progress on the letters in his name.  Works for me!  It kills me that our kids can't have goals that would be considered on grade level.  If he can work on grade level he is at risk of losing his placement.  It isn't as if he is suddenly going to not have Down syndrome.  It is crazy that he could lose some of his services if he does too well.  Why oh why should we wait for our children to fall behind before they can get the services they need. 





Saturday, October 15, 2011

Sassy Saturday Upates



I'm failing at the 31 for 21 challenge this year.  I fell asleep waiting for my video to upload last night and missed my second day in the first 15.  Not good averages.  I still don't have time to update my video so the hearing aid post waits for yet another day.  Today you get some really random updates...  enjoy!

This week Riley had an check up with the urologist.  He is doing well and while we have to continue to monitor but hope to be done with the medicine by February. 

He also had a check up with the audiologist for his hearing aids and all is good there. 

Rex won both his football game and soccer game today.  He is loving playing on the line and pushing kids around.  He also scored a goal at his soccer game. 

Riley is talking more and more.  He has been asking for his Ella.  Last night he asked for "my Ella, Kacey, CHRIS, and Unter"    So we are busy playing tonight.  Hope you are too!





Thursday, October 13, 2011



Yesterday Riley had an ultrasound and recheck at the urologist office.  This is my least favorite of the specialists offices so I went in with a bit of an attitude, I know who would have guessed that I'd have an attitude.  I must have asked at least 4 different times about this appointment and if there were any special instructions since we were having an ultrasound.  Oh no I was reassured over and over no need to drink anything special just make sure he's had enough that he can go to the bathroom.  Simple enough......  Seriously why do I schedule appointments in the morning and why oh why did I ever believe someone that told me I didn't have any special instructions before and ultrasound. 

We had a good morning and everyone had breakfast and then I chased Riley around with his large glass of milk that I was trying to get him to drink.  Just drink enough so you can go potty at the Dr office.  Once I gave him a straw we were in business.  He made Rex hold his glass for a period but other than that it was SUCCESS!  So we climbed in the car dropped Rex off at school and away we went.  As we checked in with the usual no nothing has changed still the same insurance routine I asked again.  Does he need to drink more?  Oh no he's good...  the nurse will be right out.  First thing out of the person's mouth that would be doing the ultrasound......has he had lots to drink?  Well he had a large glass of milk but that's it.  Well we'll have to measure and see if that was enough.  So after taking away his toys and stripping him down and smearing goo all over his tummy she announces that his bladder isn't at capacity so he'll need to drink more.  She hands me a glass of water...  sighs when I ask for a straw... and then announces she'll be back in 15 minutes.  Great!  Just how Riley and I wanted to spend our morning.  Crammed in a small room with him half naked and me shoving a straw in his face demanding he drink water so we could get out of this place.  45 minutes and two measurements by ultrasound later it was determined that he was at capacity and he need to go on the potty.  Well apparently this pediatric office has magical patients that must all be highly skilled at their potty techniques because the nurse was surprised when I told her that no he doesn't stand up to potty.  He had been naked from the waste down for the better part of an hour.  Seriously how exactly did you think he aimed that?  I can't imagine this is the first little boy she has seen with Down syndrome.  They aren't know for having big of anything.   She was less than impressed when I told her that we shopped for months for the froggy potty and its winning feature is the world largest pee guard.  When he sits on big potties he has to hold on with both hands which means I get the job of taking a huge wad of toilet paper and "catching" it.  This meant that she had to aim for Riley..  I don't think she thought it was a fun job.  I laughed and figured it was payback for making me sit in the room for so long.  I wish I could tell you for the sake of this story that he pee'd all over her but in reality it was just a little bit on her. 

The PA was much more organized and thorough today so that was nice.  The medicine that Riley is taking is to actually increase the capacity of his bladder and it is a smooth muscle relaxer that helps stop his bladder from contracting on its own.  It has been such a huge success with Riley!  They have to monitor with the ultrasound pre and post void to make sure there is no residual urine.  That is a common side effect of the medicine and can be an issue.  Riley has a tiny bit but I think it had more to do with his being on a potty that was too big with a strange nurse aiming for him.  The PA agreed and so we are back in 2 months for another check.  We should be off the medicine all together by February.  


The beloved froggy potty!


Tuesday, October 11, 2011

OOH YUMMY!





Riley loves to cook!  He always wants to know what I'm doing in the kitchen and loves it when we pull up a chair so he can help. We counted eggs and poured the water and oil in.  He did a great job stirring and was quick to boss me around when it was my turn.  He wanted me to stir fast and get it all mixed up. 

Stir Stir Stir

Mommy's helper



The best part... 


   Yummy brownies for a treat!!!

Monday, October 10, 2011

Are you ready for some football???




 No words are really neccesary to tell this story.  Rex is in heaven!  Huge thank you to Amy for taking some great pictures!!!


YES COACH!!!

Love the concentration

Bring it!



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Out of my way



The dive and snag

Success!

Pure Joy!


Sunday, October 9, 2011

Financial Peace


We were by not stretch a set of financial wizards before Riley was born but I have to say he adds some financial stress to our world.  We hang out in this middle ground where we have pretty good jobs with pretty good health insurance that we stress to the maximum.  We don't qualify for any assistance and in WA there doesn't seem to be anyone in recent history that has qualified with the medicaid waiver only those with older children that hang on to that jewel.  Don't get many wrong we have many blessings in our lives including a house and enough square meals to make us all round.  We do fine but we could certainly do better. 

As a means to that end Justin and I have started taking a class through our church called Financial peace by Dave Ramsey.  http://www.daveramsey.com/ is where you can check him out.  We are headed to our third class tonight and it is all about cash flow planning.  Should be fun!  They also cover some great ways to help teach our children about the value of work and money as well.  I'm not a huge fans of a Sunday evening class but I'm glad we have committed to do this together.  We are certainly moving in the right direction together. 

Knowing that someday Riley won't have us here to take care of him means its even more important that we get all of this taken care of now so we can leave him in the best shape financially possible.

So for those of you who are familiar with this program/process we are working on Baby Step #1.  Wish us luck.