Entering Battle

I’m about to enter into my first battle with the insurance company.  We received a letter a couple of days ago saying that our request for Connor to have a positioning chair has been denied.  Evidently a feeding/positioning chair is not a medically necessary piece of equipment.  (Aaaah!!!)  So now I begin the appeal process and battle with the insurance company.  Luckily, there is someone at CHOP to help with this and I’m optimistic we can prove it is medically necessary, but it just means Connor will have to wait several more months for this vital piece of equipment.  I’m happy to report, though, that they did approve his stander and bathchair, so those should be arriving in the next 4-6 weeks.

Other than the Pulmonary appointment on March 1, we haven’t been to a single doctor appointment in the last six weeks!  Unprecedented!!   There are many coming up in the next five or six weeks, but the break has been so nice.

The latest additions to Connor’s line up of tools are his very stylish DAFOs.  These orthopedic braces

support his ankles and help him learn how to stand.  He doesn’t like putting them on very much, but once they are on he’s fine and is tolerating longer periods of being upright.

Last week we had Connor’s Early Intervention one year review. This year has gone by so quickly!  We continue to be so blessed by this program and his amazing therapists, Beth, Sandy and Katie.  We spent

Connor is really into moving gears around and around.
Great work out for his little hands!

some time evaluating Connor’s progress and looking over the scales they use to measure his delays.   Connor’s physical and adaptive development (PT & OT areas) are at about 4-5 months – meaning developmentally, he’s like a 5 month old when it comes to gross and fine motor.  While we knew this, it’s always a little sobering to see it in black and white.  We haven’t gotten the scores on social development yet.  He’ll likely score higher there, but still not in line with his 17 month old peers.

Lil man sitting in his corner chair so he learns to
sit up straight and tall!

EI is adding in a Speech Pathologist to the mix of therapists to help with Connor’s communication skills.  I know he’s understanding some words and phrases now, but has very few ways of communicating to us so I’m hoping the SP can help him so he doesn’t get frustrated.

It was Friday, April 13, 2012 when we received a phone call from the neurologist with Connor’s diagnosis. 364 days now of our new reality.  In these last 12 months Connor has had 24+ visits to CHOP doctors, about 26 helmet appointments and approximately 170 therapy sessions.  I’ve learned more about the brain and development in the last year than I ever thought possible.  There have been some really hard days, but some really awesome and hope-filled days, too. Connor’s progress continues and our love grows. 

Here’s to the next 364 days!