Yes, I Bit My Tongue

I must admit, patience and biting my tongue aren’t always my strong points.  But I’m patting myself on the back for doing both last week.  The little guy and I went to CHOP on Thursday morning to finally bring home his stander and positioning chair that we had ordered in January.  We were waiting in the room when the physical therapist and vendor rep rolled the stander in.  They took one look at Connor and the first thing out of both of their mouths was “This isn’t going to fit him”.  The stander that the PT who met with us in January ordered was for a child older and several inches taller than Connor was. 

While we were waiting for a call back from the original PT, I suggested we get to work on fitting his chair.  The vendor’s face went white as he looked at me and said “What chair?”  Sigh.  He grabbed his paperwork and started reading through everything.  He glanced up and said “I totally missed it.  The chair isn’t here. This is my fault.  I’m so, so sorry.”

We never heard back from the PT who ordered the stander and so we decided that instead of ordering a size down and waiting Lord knows how long for it, we’d add foot blocks to this one to give him some height and hope that does the trick.

An hour later, Connor and I walked out of CHOP with nothing.  I was proud of myself that I didn’t GO CRAZY on the vendor and PT.  I actually felt a little bad for the vendor.  I think he had had a pretty crummy week.  He probably apologized ten times once he realized he had forgotten the chair.  So I could have gotten upset and demanded things I knew they couldn’t give me, but I just laughed and figured what’s another three weeks of waiting when it’s been this long?  Frustrating and annoying, no question, but really what can be done at this point?

Connor also had a speech consult at CHOP and his Early Intervention review.  Through both visits it was decided that Connor would have a thorough speech consult with Easter Seals through EI.  He’s starting to make more sounds and probably has 10 words, but understands much more.   We think he’s getting frustrated with not being able to tell us what he wants.   I’m really hoping this consultant can give us effective and easy ways for us to help Connor learn to communicate.

September 2013

I know I’ve said it before, but I was reminded again at the Early Intervention review how incredibly blessed we are with the team that works with Connor.  His case worker does everything she can to get the services he needs, his therapists go above and beyond what they are expected to do in so many ways and I’m confident Connor wouldn’t be making the progress he is without Carrie, his amazing sitter.  It takes a village.  I cry tears of gratitude every time I think about the wonderful women that make up Connor’s posse. 

Continued prayers and good thoughts for healing for Connor as he’s had a cold for more than 3 weeks now, for his upcoming speech consult and plan of action and for continued patience as we await his equipment. 

Bonus pic!  I thought it was so cute to watch
Connor listen to Brent practice guitar.  He'd start
smacking his little bongo drums whenever Brent
played.  A budding musician!