No better time to start learning about advocacy

We had an IEP meeting last week and while we were waiting to get started the PT who works with Addy at school told us a story about a recent PT activity they had done.  Addy had gone to the front door of the school to practice opening the door and going through.  One of the doors is supposed to be motorized and open when you push a button, but it has never worked in the almost 2 years that Addy has attended school there.  

When they went back inside, Addy mentioned to the ladies in the office that the accessible door wasn't working and that it would be so much better if it could get fixed.  They said that fixing doors is Mr. Jeff's job and suggested that Addy and her PT stop by his office on their way back to class and let him know that the door isn't working, because, if anyone was going to convince Mr. Jeff of the importance of fixing that door, it would be Addy.  [I have the impression that the door issue is an on-going thing at school.]

So they did.  Addy knocked on Mr. Jeff's door and explained to him that the door isn't working and asked him to please get it fixed so she can use it.  No word on whether he's had a chance to work on it yet, but I'm super proud of Addy for advocating for it!

No more excuses

I have been kind of slow to get regular chores assigned to the girls, but they have both helped with loading/unloading the dishwasher, setting the table, and putting toys away lately.  So far they still fight over who gets to do their job first, so I have that working in my favor.

Stronger than steel

The Walking Wonder has officially worn out her beloved tall braces.  In 2 years she's had to have the rods extended 3 or 4 times, new rivets on the belt 3 times, one set of new Velcro straps... But she has walked, run, danced, and had a blast doing it.  In about a month she should have her new pair.  Here's hoping she gets 2 years out of this new set!

What really matters

Monday's clinic appointments made for a long (really long) day.  We arrived around 11:15 and finally left at about 4:00.  About 3 hours in, I was trying to keep both girls entertained and started doodling on a piece of paper.

Addy: What did you draw, Mama?

Me: I drew you and Nora.  Can you tell which one is which?

Addy: Yeah [points to the one on the right] this one is me 'cause she has straight hair and that one is Nora 'cause she has curly hair. 

Clinic Day

Clinic day was Monday.  We got great reports from everyone we saw--yay!  Urology was first with a renal ultrasound and consult to see how the new medication is working out.  Next was lunch, followed by neurosurgery consult.  The MRI results from last week show no change in the syrinxes and a continued recommendation to not take surgical action with the tethered cord since symptoms haven't progressed there either.  Next were OT and PT, both of whom were impressed with the progress Addy has made.

Now if we could just shake this sinus infection... Poor kid has been under the weather for most of a week now and finally starting to get better.  But I'll take sinus crud over stomach flu (which is hitting our school system really hard right now).

Hands down favorite patient all day

Addy had an MRI of her spine yesterday. All went well, but it was a long day of not eating for her (it takes 2-3 hours to get all of the images so they put kiddos under general anesthesia).  She did great with the whole thing!  Hoping for a thumbs up on the syrinxes and tethered cord, but we'll have to wait until clinic next week to find out for sure.

The Shopping List

The Precocious Preschooler told me this afternoon that we needed to make plans for her and me to go shopping and get dinner together.  I asked her what we needed to shop for and she told me we needed to go so she could help pick out a wheelchair for Little Sister so she can have one for when her legs are tired.  Heart strings are pulled.  I told her that we still have a stroller that Sister can use if she's too tired to walk, which she seemed to think was an okay answer, but I can tell she'll bring it up again.  I think it's as much her being sweet and looking out for her little sister as it is testing to see if she's as different from her sister as she is from her friends at school.